BRAIN-TUMOR PATIENTS RUNNING A MARATHON?

Yesterday I wrote a post on the ‘Beating Brain Tumor’ site and I actually got some mad BRAIN-TUMOUR RUNNERS interested in running a relay marathon  (ie sufferers NOT supporters!) and now need to drum up more support if this is going to happen.  The idea (it’s in the title) is that 4 actual brain-tumor patients run a marathon (it’s a relay so we only need to run around 10K each) to raise awareness, funds and, most importantly, to engender hope for those patients who are facing this diagnosis amongst all the negative news that is around at the moment. Sad stories are great for sympathy and fundraising and there are loads to choose from. Lord knows,  we certainly need more research and more funding, and more progress…BUT there are people out here in ‘brain-tumour land’ who live on, healthy, and well beyond statistical prognosis, with joy and hope despite having given a stupidly dismal prognosis. IT IS POSSIBLE (read the rest on my blog if you don’t belive me!)

I already have the possible makings of one team of 4 (including me). But why stop here?
Please share and spread the word and point any interested parties to me.

more details of the two possible races are in the links below.

Manchester Relay Marathon 2018

mitonkeynes relay marathon 2018

 

Another year, another scan, another celebration: Three years cancer free.

Screen shot of latest scan (on left) and previous  scan in August (right). Officially no change and, more importantly, no evidence of recurrence. I still have a hole in my head but I seem to manage perfectly well without what was in there (spelling and times tables – which, it transpires, are completely surplus to requirements for modern life… should someone tell primary school teachers that??

Ketogenic diet, heathy living and absolutely no processed c**p.

GBM4 is banished.

Tessa Jowell, brave in the face of brain cancer

Today Tessa Jowell was interviewed on BBC2   and bravely announced that she is determined to make sure she lives a very long time despite undergoing treatment for GBM. This is not especially brave, (there are many people going through this as we speak) but going on TV and speaking out about it IS brave.

She talks in the interview about ‘adaptive  trials’ which will she hopes will accelerate the pace of research. Well, I don’t know but I do know that something needs to happen.  Research is underfunded given that this is the biggest cancer killer in under 40s and affects all ages from children to the aged.

Tessa is no doubt receiving the ‘best’ treatment. Sadly the best (standard)  treatment is pretty poor. With GBM4 you will be lucky to live more than 12-18months. But some lucky people do much better. WHY? There are factors that, with the same tumour, your prognosis is somewhat better and your response to treatment is better – apparently to do with the morphology of the tumour, the genetics, markers, methylation etc. etc. Every tumour is different,  that’s why its called ‘multiforme’. We meed to understand more of this and researchers are on the case. BUT knowing which types will do well and which will die quickly is of very little comfort to us, the patients, in the throws of treatment.

I was told by my surgeon that my cancer had ‘no redeeming features‘. Oh, well, I thought, I like a challenge. When I outlive my dismal prognosis nobody will be able to say I was one of the lucky ones who got a less aggressive type of cancer.

I am now smugly outliving my prognosis, not just limping through but fit and heathy and living life to the full. Three years and counting. My surgeon was skilled, the chemo and radio went well, but even my surgeon said he would most likely see me before the year was up and try and resect the tumour again when it recurred.

Now I can’t prove that other things I have done have been the things that make all the difference but I can tell you that everyone I know in the brain cancer world who is living well and outliving expectations IS doing something over and above standard treatment.

Personally, my main contenders for ‘change makers’ are described elsewhere on this blog. These include ketogenic diet, eating good fresh organic food with no processed foods, supplements such as Boswellia and Curcumin, and repurposed drugs like melatonin along with increasing fitness, exercise, reducing stress… but my best advice to anyone facing the confusing array of advice available is – have HOPE.

The definition of hope is ‘to wish for something that is possible’. Look around, there are people living well and long after a ‘terminal’ brain tumour diagnosis. Dont just take my word for it, research them for yourself. It IS possible, and if it is possible there is always hope.

Tessa is a brave and determined lady. From that alone she will do well. I hope her representation raises the profile and sparks more research and funding, goodness knows it is needed. But my message to her personally is ‘you don’t have to die to do that‘ …. read the rest of this blog, read the testimonies, read some of the books on my recommended list, read the stories of  inspiring brain tumour survivors, read their blogs – then choose to ignore your prognosis and live.

Tortillas on keto diet?!

Sometimes the family want to pig out on mexican, or stuff the contents of the fridge into a huge wrap for lunch and you feel… well, a bit left out. I mean, salad is all very lovely but you can’t stuff your mouth with handfuls of it in front of a movie.

Heres’s the solution: For heathy ‘fast food,’ yesterday, I made a batch of freshly cooked tortillas. Ok, yesterday it was not technically fast food, but now I have some in the fridge and some in the freezer for instant lunches and snacks. Today’s lunch was very fast. I also made (as suggested in the recipe) some tortilla chips to have with a dip another day. Here’s what I did.

Beef fajita in home made keto tortillas (more detailed intructions on recipe page)

ingredients

Ready made beef fajita strips (from Riverford. – of course you could make your own, it’s only a matter of quick frying finely sliced meat with spices and maybe a few tomatoes, peppers and onions or even make it veggie and add extra veg/salad/cheese etc)

An avocado mashed up with creme faiche, a little paprika salt and pepper.

Fresh salad leaves/rocket/tomatoes

Sliced onion and peppers

Some mushrooms fried in butter or e.v. coconut oil (I used shiitake)

A dollop on cream or creme fraiche or full-cream thick yogurt

A warmed keto tortilla – brilliant recipe here from The Ketodiet website.

instructions

First make the tortillas (or use one from your store – rewarmed in a pan is nice) Stir fry the meat. Pile the other ingreients into the tortilla to your taste, along with the meat…Take some kitcen roll with you and eat in front of TV! (It is not forbidden to eat easwhere.)

Who says a keto diet is too strict, too boring, and too difficult? I beg to differ. (And mine was a lot tastier than my son’s, who had a boring old flour tortilla from the sumpermatket.)

 

Scan muddles, the ‘flu, taking charge… and meeting the Mayor!

Since my last post (not the bugle kind) I have: had the ‘flu, enjoyed Christmas, upgraded my 5K running app to the 10K version, gone on holiday to California with my Kids, sat on a swing-seat on the deck of a log cabin, doing something I never (to the utter disbelief of my kids) did when I was at UNI,  spent New Year walking in the San Jacinto Mountains, met the Mayor of Idyllwild, (more about him anon), screamed myself hoarse at a basketball match, missed a whole month of HBOT, missed most of my scheduled runs, but probably, most astonishing of all,  cancelled a scan… twice.

Shock horror! I had already refused the scheduled date of my 4 monthly scan because i simple didn’t like it. It  was issued to fall more than 3 weeks before the results clinic. Convenient for them; more than inconvenient for me. I rang and “put my foot down”. It wasn’t that I had an immovable event like a wedding or a funeral. No, my reason was that scanxiety is bad for your stress levels and thus bad for your prognosis. 2 days is bad. Nearly a month is ridiculous. I expected a slight disapproval (after all I was not being a proper patient ‘patient’) but to give them their due, they obligingly shortened the wait to the usual 10 days.

Then  planning the LA trip took over.

I had been aware that receiving a less-than-perfect result, 4 days before Christmas and with a booked long-haul flight the day after Christmas day could be pretty disastrous, but back in August that possibility seemed remote. It had seemed like a perfectly good idea because of course I was going to have another completely boring scan report, which would be a  lovely Christmas present for all involved. As the months went by, my confidence did from time to time wobble… what if? But, nevertheless, I managed to stay positive, with the help of friends and not forgetting my lovely oncologist, who seemed confident that the pre-Christmas Prosecco could be uncorked in her clinic.

Then I got the ‘flu!

You can’t go in an MRI scanner coughing your lungs up!

The day before the scan I rang the hospital and croaked down the line “Ib, shorry I cabnt cubn, I have de ‘flu.” That day I was as sick as I have ever felt. They said they could move it to a day in early January. But  I would be in LA then! The flights were booked, a cosy log cabin in the mountains awaited us for new year, and there was NO WAY I was going to let my family enjoy all that without me.  Nope! I’m off to sunny California on Boxing day.

For the second time that month I put my foot down.

“Will you be OK to wait that long?” the secretary asked.

My qualms disappeared like hot milk spilt on a boiling plate. “Of course I will!”

That was that. Shopping, sellotape and glitter, spouts (see amazing recipe), popping corks, crackers, hurried packing, 11hr flights, hikes in the forest, log fires, and my favourite new-years eve memory: a  communal family teeth-cleaning circle accompanied by the hum of electric toothbrushes, and  whilst all loudly humming a chorus of “Auld Lang Syne”  through foaming mouths. What a way to banish scanxiety  – I can recommend it all.

And the Mayor! The folk who live in Idyllwild, a little mountain village just north of LA, must be the happiest, most sensible, well balanced people on the planet. They have elected (in perpetuity) a Mayor called Max… who is the loveliest , handsomest, most approachable mayor in the world… because he is a dog.

Driving back form our walk, we were hoping so catch sight of the Mayor and we spotted him in his Mayor-mobile (a white pickup truck with his title emblazend across it. There he was, resplendent in the back sporting a formal blue stiped tie, impeccably groomed and smiling at his people. When his drivers realised they were being tailed by a bunch of Brits all laughing and pointing, they pulled over and introduced us to the Mayor (and his two deputies, in a diferrent van following on behind and wearing red striped ties). Max was magnificent and the most guenuinly friendly Mayor i have ever met. (the only other Mayor I have met is the one who atended my Grandmothers’s 100th birthday party and presended her telegram from the queen He was perfectly nice but I think we would all have prefered the dog.) We all have his phone number and e mail now, and are assured that if we are ever in Idyllwild we only have to contact Mayor Max, and he will come out to meet us. If we ever have any Mayoral business, we can get in  touch by e mail, phone or just pop into his offices and he will deal with it at once.

What service!

I can’t help wondering if the NHS should bring back matrons… canine ones.

 

 

 

 

[Oh, and btw, my scan is on Sunday 21th Jan with result on 31st – 6 months in the end.]

Santa Run in aid of Brainstrust

On Sunday 3rd December I am doing a 5K run in Victoria Park in London, dressed as Santa, along side a load of other Santas. Most will probably be fitter than I, and will run faster but not many will have a Bob-shaped hole in their head.

I am in training using the “couch to 5K” app. I did this once before when we did the obstacle race, but sadly it should have been re-named “couch to 5K and back to couch” for me on that occasion. I am determined to keep it up this time! (we shall see!) I started off puffing and wheezing after 2 mins run. I can now run for 30 mins (still puffing and wheezing but at least I overtake the walkers).

I’m sure the real Santa will be there somewhere but picking him out will be a bit doing a ‘where’s Wally’. I would put my bet on the one puffing along at the back with a mince pie in one hand and a glass of sherry in the other. 

If you would like to support me, either run alongside me, mopping my brow and sliding delicate slivers of avocado into my mouth as I run, OR donate to my just giving page here.   Or you can give £5 (or any amount you like) by texting TNYA77£5 to 70070.

(I know what I would do, and it all goes direct to Brainstrust)

On behalf of all brain tumour patients, their carers, friends and families (many of whom will be running in amongst the Santa pack) I wish you all a cheery  Ho Ho Ho and a big Christmas thank you!

 

 

Lifestyle and Cancer

On Friday, I attended a conference entitled “Lifestyle and Cancer – how closely are they related?” The answer of course is: “very closely.” No surprises there.

The conference was run by The Bagnall Centre for Integrated Healthcare, based in Chesham in Buckinghamshire.  They had gathered together an impressive range of speakers who covered metabolic disorders, stress, lifestyle interventions, mindbalancing, research on lifestyles and cancer, and a session covering nutrition and exercise. The lectures were cleverly interwoven with relaxation exercises including a meditative walk in the beautiful autumn sunshine in the grounds of the conference centre.

I couldn’t possibly report on all of the excellent presentations, but judging by the presence of a massive camera and its lovely, if  slightly bossy, camera man, a video will hit youtube in due course. In the meantime here are a few of the fun-facts and revelations that particularly tickled my fancy:

  • obesity is linked to many cancers but especially endometrial cancer in which it is so intimately associated it can almost be called causative.
  • the above link is due to the link between obesity and metabolic factors that also increase oetrogen. Many cancers are hormonally linked, endometriosis is just one.
  • The amount of adipose tissue is directly related  to incidence of endometrial cancer.
  • the word ‘attitude’ is an aeronautical term and signifies the angle of approach a plane makes on landing. The wrong attitude can lead to a fatal crash. Atitude to disease and sickness is the same.
  • mindfulness techniques are associated with improved immunity –  even better than some drugs intended to achieve that.
  • “There is no evidence that is validated and applies to the present moment.”(so…evidence based medicine is meaningless to a single individual in a single moment in time)
  • cancer often gives people permission to admit their own needs and fears for the first time.
  • a person’s values are of great importance in planning treatment but they must be their values and not their perception of ‘ideal’ values.
  • the difference between relaxation and mindfulness is that when relaxing you expect to achieve a relaxed state, whereas in mindfulness, there is no such expectation yet real relaxation will be an endpoint.
  • exercise has an impressive list of benefits including improvement in insulin sensitivity and improvement in DNA repair.
  • intensive exercise during chemo significantly improves prognosis. So don’t to go to bed and rest – go to the gym!!

It’s always a pleasure to listen to professions who are passionate about their field and their patients. To hear main stream doctors who are convinced of the immense value of integrating medicine with other therapies gives me great encouragement that some to the entrenched and misguided attitudes I have come up against on my journey might at last begin to be contested. It is a slow process, but then so was evolution.

 

 

 

An open letter to all who are invoved in the clinical care of cancer patients

This is addressed to anyone who has ever diagnosed, treated, counselled or comforted anyone with cancer. Obviously I can’t speak for everyone who has gone through the trauma of getting a devastating diagnosis, undergone treatment, and come out the other side (or not.) But I can speak for myself, and others I have met who have shared some of the same anxieties, tribulations and stresses. .

I will begin by apologising for the times we (the patients) were argumentative, stubborn, grumpy and sometimes down right rude. Being stressed and frightened by our diagnosis or worn down by pain and fatigue is no excuse, but it is a reason. It is, however, not the only reason. There are many reasons as there are individuals, but one important  reason, common to many of us, is more to do with you (the ‘experts’) than us.

In light of that,  I would like to thank the many people – doctors, nurses, therapists, carers – who did not dismiss our questions no mater how silly, who treated us as equals and as part of the team, who talked to us in terms we would understand without patronising us, who listened to our theories and considered them seriously, who did not pretend to know about something they were unfamiliar with and got back to us when they said they would, who did not waste our precious (sometimes all too short) time with senseless administrative inefficiencies, who cared about our life not just our response to treatment, who asked about our feelings and our emotions not just our symptoms and, most of all, who held hope in their own hearts for us, even when we were in danger of losing it… especially then we were in danger of losing it.

As a ‘veteran’ GBM4 survivor, I have seen ‘survivors’ die, I have seen hopeful patients become hopeless sufferers, I have seen fighters succumb, I have seen remission turn to recurrence, I have seen certainty be overcome by doubt. But I have also seen  hope,  faith and  love, quell all of the above and more. And where hope, faith and love take hold, I have seen amazing healing against the odds.

Clinicians can be instrumental in that healing if they have the humility to realise that success is not down to their treatment alone – it is to do with the trust, faith and hope vested in the relationship between  healer and patient.

I am certainly not saying that medical treatment is irrelevant. But we all know that the unpredictability  of response is less about blind statistics and more about relationship, communication, personality,  environment, phycho-neurology, epigenetics, metabolism and much more that we don’t understand.

Looking back at pages on this website, I am perpetually surprised by my early appreciation of such matters.  I have no idea where these ideas came from,  when i had done so much less research than i have today but I frequently need to review and heed my own advice. Reading for example the pages on faith, or hope, or the reasons for sickness, and my early blogs,  i always feel uplifted. And the pages on how ‘experts’ have sometimes hurt the people I love spurs me on to write blogs like this.

Right now I am convinced that,  just as I did,  every cancer patient who stands up to a dismal prognosis will say “I am not a statistic!” I am equally convinced that doctors need to believe this too. In fact, everyone who interacts with us needs to belive this. Because, together, we can demonstrate statistical anomalies, and when anomalies club together, they become a phenomenon  to be reckoned with.

We can change statistics, one success at a time.

 

Keto breakfast at home.

Just got back from a  fabulous break in Tarifa in Spain with great food, exercise, sunshine, yoga, walks on long white sandy beaches watching the Kite surfers.      But missed this….

Bacon  – organic streaky 15g [Fat 4g, Carb 0.5g, protein 0.3g]

1/2 small avocado [F 9g, C  6.5g, P 2g]

egg yolk and 1/4 of the white  [F4g, C 0.6 P3g] (I dont much like the white and use it elsewhere, but no harm in it – it’s mostly protein)

mushroom 50g [F 0.2g, C 1.6g  P 1.6g]

4-5 blueberries [<1g carb]

salad (mostly rocket) [<1g carb]

30g coconut oil for frying [F 30g] and olive oil for drizzling [F 12-13g]

+ 30 mls organic double cream for coffee and a dollop on top of the blueberries on the avocado. [F 5.5g,  C 0.4g,  P0.3g]

Approximate tally: Fat 66g, carbs 11g, protein 12g. 

Voila! Keto breakfast and plenty of carb ration left over for later in the day. I will probably use most up on some sweet potato fries [50g = 10g carb] and or celeriac fries [50g = 4.5g carb] and a nice juicy organic steak [0 carbs] or some oily fish, and more mushrooms!!  (Cant have too many mushrooms) And of course salad.

Target for the day is below 40g carb, but I dont get hung up on it. I just did the calculation today because folks ask me what and how much I eat and i am usually appallingly vague! So there ya go – not a recipe for perfect  Keto – more a personal choice.

 

UK Brain Tumour Symposium

On 12thOctober 2017 I attended the first UK Brain Tumour Symposium supported by Braintumour Research and Brainstrust, two charities who are at the forefront of brain tumour action in research, patient support and lobbying for improved treatments and funding.

There was an impressive lineup of speakers who between them told us of latest developments in research, treatments and management of patients and carers.

I was particularly struck by Dr Robin Grant‘s report on the top 10 priorities for further research, developed by the ‘James Lind Alliance’ neuro-oncology priority setting partnership. An interesting chart showed the stark difference in top priority between patients and clinicians. For patients it was fatigue and concern about  future uncertainty standing way out ahead of symptoms, whereas for Doctors the focus  was very much on physical symptoms –  motor dysfunction, seizures, communication deficit and headaches etc. From the group’s extensive  surveys involving patients,  clinicians and carers the researchers identified common uncertainties and looked for  associations or causal links and effects. From hundreds of concerns, they narrowed it down to a top 10 areas of concern, deserving of more research:

  1. lifestyle factors – including diet (particularly ketogenic)
  2. the interval between scans – how frequent in order to balance useful data against ‘scanxiety’ as well as potential harm done.
  3. early diagnosis – what is the effect on outcome and how to speed it up.
  4. recurrent glioma – QoL v benefit (or not) of continued treatments.
  5. early referral – efficiency of referral and speed of treatment
  6. molecular subtyping – to target treatment
  7. long term effects of treatment (eg radiotherapy, surgery, chemo) such as cognitive outcomes.
  8. support for carers and how that impacts patient’s outcome as well as family wide issues
  9. management of fatigue
  10. extent of resection

Hopefully this will help drive research that is going to make a difference not only to prognosis but also quality of life.

Dr Kieran Breen gave an excellent talk on the pathway from ‘idea’ to introduction of a new therapy in the clinical setting. This can take 15 years! Encouraging developments such as engineered immunotherapy, gene therapy, oncolytic viruses, dc Vax, medical devices and repurposed drugs all show promise. Some therapies are in a more advanced stages of development in USA but there are trials in UK that may produce results in the near future: developments such as the trials on Safivex (cannabis) and DC vax in which the patients own tumour cells are used to produce a personalised vaccine.

There were many more inspiring and informative lectures not least of which was from Carrie Holbrook who movingly described her family’s  journey leading up to her husband, Steve’s death form GBM4 less than two years after diagnosis, and the  setting up of a charity, ‘Hills and Headwinds’  to raise funds and awareness.

The day certainly gave me an insight into the difficulties and complexities of driving meaningful research into brain cancers. I remain convinced that there is much more to long term survival than hitting on the right treatments for your particular ‘brand’ of tumour. The new WHO reclassification of brain tumours, explained by Dr Geoffrey Pilkington, can only be described as enormously complicated, now taking into account not only tissue morphology but genetic makeup and mutations. This complex classification has begun to describe why under the old system prognosis for different types and grades of tumour was so unpredictable. Not all centres are looking at all of the factors involved and patients need to be better informed so that we can ask for the relevant tests, not just for better diagnosis and treatment appropriate to the  tumour but also for making decisions about benefits (or not) of treatments in regard to quality of life.

If we take anything away from this it must be the message – Not all tumours are the same, indeed not even two of the same variety and grade of tumour can be treated as equivalent. We should be asking our clinicians to test for markers and discuss with us the implication for treatment options. After all, though we all look for those life extending treatments, how we live is more important than how long we live – cancer or no cancer.

“Don’t count the days, make the days count.” – Muhammad Ali

 

Coronation street character contracts brain tumor. Shock Horror!

 I am really concerned about what is going to happen in the storyline in Coronation Street over the next weeks.  Not being a coronation street watcher* I can’t make any bets on how it is going to be portrayed. I am told that the writers are working together with doctors and charities supporting brain tumor research and all those charities are celebrating the attention this will attract. Unfortunately that doesn’t mean watching this story will be a positive experience for the likes of me and other brain tumor patients. And, with all the media attention it is getting, I predict that many of us who have never watched ‘Corrie’ before will tune in alongside those sufferers who already take off their wigs and scarves and routinely treat themselves to an evening watching their favourite soap.

Brain tumour is one of the most poorly resourced for research, and improvement in survival is abysmal compared to other cancers.  Awareness needs to be raised so that people are moved to give money and support to the cause. But this often involves publishing grim statistics and tragic stories. And there are plenty of those to choose from. I am keen to support the cause but my own story doesn’t fit the bill so I don’t often make headline news in the fundraising stakes, which is a shame because I am living proof that it is NOT ALL DOOM AND GLOOM . And as much as I want the seriousness of this cancer to be stressed, am even more keen to support sufferers by raising hope. Reading about lives cut short and pain and suffering is not helpful to us. What we need to hear is GOOD news – people surviving against the odds; people sailing trough treatment without so much as a queasy tummy; new promising treatments, supplements, diets. And take note: a brain tumour  diagnosis will change your life…BUT  it can be for the better. That’s my experience.

This TV series will be avidly watched by sufferers. If they portray hopelessness, suffering, harsh treatment and dreadful side effects that is going to adversely affect the many, many people watching who, let’s face it, have their impending death stuffed in their faces by oncologists all the time. I KNOW what it is like to get this diagnosis. I was predicted a recurrence within a year. I was predicted death within 2 years. Yet it is nearly 3 yrs and I am fit well and scans show no sign of tumor. IT IS POSSIBLE and possibility is all you need have hope – the most powerful treatment available.

If this storyline destroys hope for anyone watching, the writers and producers are doing a great disservice. I understand they are trying hard to get the facts right, working with medical specialists, but I know from bitter experience that, though great at prescribing treatment, the medical profession are pretty poor at encouraging hope.

So, if you are a patient, or the loved one of someone suffering from a brain tumour, remember – this is fiction.The facts are as follows:

  • GBM has, statistically, a grim prognosis, BUT It is possible to be a long term survivor.
  • You are not a statistic.
  • Brain tumor research needs more funding so that the whole statistical curve can be improved, BUT meanwhile there are many additional measures and  things that can contribute to a good outcome which can give sufferers hope and encouragement such that  individuals routinely  outlive their prognosis.
  • hope and expectation are  key. You can take the best treatment, have the best surgeon, eat the best diet, but if you don’t have hope these measures will not be effective.
  • if any oncologists are reading this they need to read this and this.
  • and if any scriptwriters are reading this, maybe you should read this.

*In case you were wondering the picture at the top is from the last time I reguarly watched coronation street. I think the cast have changed.

Scan News

 

scan 23 aug 17
scan 23 Aug 17

It looks a mess! But I am assured that it is good! Officially ‘no recurrence’ of Bob. Hooray!

However, as usual, I had questions for my consultant:

“What’s all the white gubbins around the resection site?”

Radiotherapy scarring.”

“Humph! It looks dreadful!”

“Well it looks a bit less than last scan, I would say.”

“Oh. Well I still don’t like it.”

“Well, have a look at this!”

irradiated area
irradiated area

“What is THAT?!”

“It’s the radiotherapy plan. we don’t usually show this to patients. This is the extent of radiotherapy your brain has undergone.”

“No wonder there is a bit of  gubbins around  the tumour site!!”

“Exactly. All quite normal.”

So, there you have it!

Having seen that, I am just amazed that i am not just sitting in a chair dribbling with my tongue hanging out, my head lolling to one side and my knickers round my ankles.

How wonderful is the human brain!? Even mine!!!!!

XXXXXXX

 

Scanxiety again! Will this never end?

κομπολόιNot wanting to moan, but here’s the thing: when you are told you are highly unlikely to be alive a couple  of years hence, and will probably need another bit of brain removed within the year, you are grateful that they are going to keep a close watch on you. You are reassured that they threaten  leap on you at the a sign that “Bob the Blob’ (pet name of my tumour) is returning. You gratefully sign up the three monthly scans once initial treatment is over. But, and here’s the moment of ingratitude,  I am now two and a half years on and nothing has happened. No dramatic deterioration, no fits or faints, no new symptoms, no repeat surgery, nada! And scans every three months have been clear.  Hooray!

But about now, (and I know I’m not alone) we ‘survivors’ begin to think : “Is this it?’

Of course, I am deliriously happy and grateful that I am well outliving my prognosis but I have to admit that am getting unreasonably greedy. I am no longer content to be a ‘lady in waiting.’ As long as I have to turn up every 3-4 months to be checked for recurrence, I will always have my faith tested. The system encourages you to be ever waiting for recurrence! I belive that I am a (rare) long-term survivor; I have faith in the  treatment and strategies  that have allowed me to attain this status (see rest of blog for details.) But as long as I am deemed to need close watching, that faith and belief will always be periodically tested, particularly  in the period between the scan and the result. Scanxiety.image

I have blogged about this before but the longer I go without problem the more I wonder what it will be like pitching up three or four times a year for scan…  for ever! The GBM protocols don’t really allow for decreasing frequency of follow up because ‘nobody’ survives long enough. At the moment I am happy enough, although I find the journey tedious and the scan boring. But how will I feel another year from now, or five years, or ten? How will scanxiety manifest in that distant future?

For now, mustn’t grumble! How grateful I am to be alive to ponder this question but I would love to hear from anyone who is further down the line. (There are a surprising number)  Does scanxiety persist? Does it change… to boredom/anger/irritation? Do they (the doctors) get bored with the waiting too? Do they ever  give up on the scans and follow up? Do you get to feel neglected?

If I post this now, will I live to regret it on Wednesday (results day) when they inform me of dastardly plans  to surgically remove my drivers licence along with a bit more brain! Noooo! It doesn’t bear thinking about!

So,  posting  this in hope of scanxiety being transferred from brain to blog.

Ahhh. That’s better.

I promise to post  good news soon. Meanwhile, think of me and all who are in the grip of scanxiety,  pray for sweet dreams for all.

Night night.

image

 

Lazy low carb Breakfast

IMG_0670My usual breakfast is bacon,egg, fried bread, mushroom avocado and salad. But sometimes I fancy being ‘naughty’ (and a bit lazy). This is my take on peanut and ‘jelly’ sarnie.

1 slice of ‘live life’* bread with the crusts cut off, fried in coconut oil.  (2.4g carb),  spread  this with 10g macadamia butter  (0.7 g carb)  and top with blueberry ‘jam’ made by heating about 5 blueberries till soft. (1.4 g carb)(can microwave)

Tots up to around 3.5g carb in all (and about 15g healthy fat) You might want 2 slices if you are hungry!

About the same carb as a full English but makes a change! And equally  good for mid day/afternoon  snack – miles better than a granola bar and won’t spike your blood sugar.

(*High protein low carb bread – you can buy this from some supermarkets e.g. Budgens.  Or, better still,  Liddle do good high protein rolls which I slice thinly for ‘toast’)

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Controversy breeds confusion – food for thought.

1424642655230I spent  last weekend at a conference run by the Public Health Collaboration. The topic was  the benefits of low carb diets. It was attended by a range of doctors, therapists, nutritionists, nurses and others interested in the topic including at least one restaurant owner and food writer and a an extraordinarily  engaged farmer. And me – doctor, enthusiast and patient.

The conference was really inspiring. We heard speaker after speaker giving evidence of LCHF (low carb high fat) diet ameliorating, curing and reversing chronic disorders. Obesity, Type 2 diabetes, (and even stabilising Type 1 diabetes), coronary heart disease and neurological diseases to name but a few. We also heard about the terrible persecution of some these pioneers in their field, in some instances  being discredited and ridiculed (despite amazing results and with the full support of their patients) and subjected to a campaign of misinformation,  all so that the outdated and frankly dangerous  ‘official guidelines’ can be vindicated.

I will not comment on this but suggest you read for yourself.

Meanwhile, for better or worse, I remain a staunch supporter of diet, nutrition and lifestyle reform as a vital component of any treatment for cancer (indeed any chronic illness). Sooner or later the ‘powers that be’ are going to have to admit that they were wrong. They can’t do that without losing face and possibly even risking legal action. Controversy  breeds confusion.  Guidelines,  pharmaceutical companies, the sugar industry and manufacturers of the ‘low-fat healthy’ products collude  to refute the evidence that mistakes were made and the global obesity epidemic was the result. We could sue them, argue with them, humiliate them but I suggest we declare an amnesty in the interests of putting right the wrongs and allowing the correct  information to be made public without contradiction. At the expense only  of  some those who profiteer from this lie, lives will be saved and the improved health of the nation will save the NHS.

 

FACTS:

Fats don’t make you fat – sugar and carbs do that.

We do not to need to eat ANY carbohydrate. (though a little is not dangerous and we will get enough of  that from a healthy natural diet including  fruits and vegetables)

Sugar and carbohydrate in the quantities consumed in a Western diet cause obesity, diabetes and metabolic syndrome.

Low fat diets, by definition mean high carbohydrate and sugar (very rarely high protein because carbs are cheaper)… see above.

High cholesterol is not a cause of heart disease, it is a response to it.

Sugar feeds cancer.

Cancer cannot thrive on a ketogenic diet.

The dietary information peddled by organisations like NHS dietitians, Diabetes UK*, British heart foundation and others is WRONG. (*not to be confused with Diabetes.co.uk which does excellent work in supporting an appropiate diet.)

Don’t take my word for this, do your own research. Look at the failure of current guidelines over many many decades. Is there ANY evidence that  the current dietary guidelines have been successful? NO! Obesity, diabetes and cancer are on the increase. So give the new approach a go. Throw out the rice, pasta, potatoes, cereal, buns, cakes, fizzy drinks and sweets. Ramp up the steak and roasted veg,  breakfast on bacon, egg mushroom and tomato, fill up  on avocado, nuts, olives, berries and cream, dine on fish and crisp green salad, slop on the extra virgin olive oil, finish off with some lovely ripe cheeses. What have you got to lose (apart from some weight)? What might you gain!?

You can find some great information in below links, mainly in the form of videos (because many people can’t be bothered to wade through the research papers). These people are experts who put it across much better and many of them spoke at the conference last weekend. Look them up and re-read the evidence if you still need persuading.  Then get yourself a good low carb recipe book and start to really live. You won’t regret it.

charlotte Summers directer of Diabetes.co.uk Low carbohydrate programme 185,000 anecdotes.

Nina Teicholz at TEDxEast: The Big Fat surprise

Aseem Malhotra- the great cholesterol and satins con.

It’s a lifestle not a diet – Drs Jen and David Unwin

Dr. Andreas Eenfeldt – ‘A Global Food Revolution’

Dr. Zoë Harcombe – ‘Should dietary fat guidelines have been introduced?

Starving cancer: Dominic D’Agostino

How to make diseases disappear | Rangan Chatterjee | TEDxLiverpool

Diet doctor website

and other articles on my blog here and here and here and here and here

 

 

What is remission?

debtThe word ‘remission’, in cancer patients, tends to be cause for celebration. It is declared when all signs of disease are gone. But, in practice, there is usually a time factor. Try as may I can’t find any reference to how long after treatment it is safe to declare remission. In the various definitions, it merely says that remission means ‘no evidence of residual disease.’ Indeed, NED (no evidence of disease) is another word that is used. But by that definition I was in remission (NED) from the moment of my first post treatment scan.

I was certainly not encouraged to think of myself in that way – just the opposite (see My blog page). I doubt that most patients look on it as remission when they are still recovering from surgery or chemo. In fact, nobody ever talks about remission in cases of glioblastoma… ever. The medical establishment is so convinced that even the best treatment does not remove all the cancer and recurrence is not a matter of if, but when.

The dictionary definition of remission (in non-medical terms) talks about the ‘cancellation of debt, charge or penalty’. I prefer this definition. It means that the debt is crossed through – it is still on record, it can be seen if you look hard at the scribbled out section, even if you can’t quite make out what the debt was, you know something happened in the past. BUT IT IS NO LONGER RELEVANT.

Don’t consider yourself still sick just because you still have some blots and scars. Cancelled does not necessarily mean erased. And do not, I repeat NOT, consider your remission/NED status as a temporary phenomenon! Just as the cancelled debt, it will only return it you accrue more debt. Your cancer has been cancelled. The debt is paid. Now go and make sure you don’t get into that state again!

How?

Cancer is a wake up call, not a death sentence. Put right whatever n your life that has allowed this opportunist to exploit you. Heed the call. Lots of pages in this blog explore what things I needed to give attention to, to understand, to implement change. They may be different things for you, but nobody I know who has a successful outcome from cancer has carried on precisely the same as before. And nobody that I know who has confounded their prognosis has looked upon the changes they made as temporary. Life changes afer a cancer diagnosis – it is meant to. Relish it.

Go out and live life with this clean slate. The debt is cancelled iindelibly, it will not come back. It was not without cost, so never undervalue the price that has been paid but live with gratitude not fear.

Oh, and P.S. –  Not in remission yet? – Says who?! The debt is cancelled when at its worst, not when it is nearly cleared. Those who have most to cancel are the most grateful (to misquote Luke 7:47*).

healing

* “he who has been forgiven least, loves least.”

 

 

Mini milestones

…. And maximum blessings.image

I have been looking out for a car since i got my licence back. (I sold the old one two years ago when i was told i would not be able to drive for 2 years after surgery…. And turned my drive into a patio! ) Up to now everything i looked at was either too expensive or too battered. But this BH weekend I had planned to go to Brighton with the boys and noticed a mini convertible for sale at a garage down there for an extremely good price. The pictures weren’t up on the website to see but I thought i might as well take a look whilst I was there.

I was LOVELY …. It had everything on my wish  list of desirable features, (including an insanely low mileage) and some I never dreamt might be possible (like all leather interior).

I drove it away …and the sun even came out so I could put the roof down.

????  .

Life is all about noticing the blessings. You couldn’t miss this one!

I GOT MY LICENCE BACK!

712b43e7a13058da986393970ea14dc5Anyone who is friends with me on face book already knows this of course but I thought I must tell blog-followers. Two years ago when I was told that I had 12-18 months (statically) to live and would not be able to drive for 2 years I laughed. The oncologist smiled faintly – “We do get people driving again,” she said, but is was said in the sense ‘It’s not unheard of’ rather than ‘(most)people do get there.’

I put it out of my mind and got on with getting a craniotomy, a new bike, and a bus pass (If you are medically unfit to drive you can get a free bus pass from the council). I sold my car and turned the drive into a patio.

In January this year I started nagging the DVLA. You need to get them to send you a form, fill it  in and send it back; when they receive it, they then send one to your oncologist, she fills it in and  sends it back. Then you wait… and wait…. and wait. I tried to short circuit this by offering to send the letter and form from the doctor with my form but no – it had to be the long way round.

I finally got impatient a couple of weeks ago and rang them (again). They refused to guess how much longer it would take.

I was not going to give up. Much more nagging:

It’s in a queue.” 

“how long is the queue?”

long”

“How long?”

“very long”.

“can you check how far I’ve got?”

No, but  you will be marked as urgent”

“Since january!?!”

Eventually the guy on the end of the line buckled and told me (somewhat conspiratorialy as if he wasn’t supposed to say this) that under section 88 of the DVLA act, if you have a letter from your oncologist saying you are fit to drive you can go ahead and drive as long as you know the DVLA are processing the licence. I got in touch with the oncologist’s secretary and got him to persuade my oncologist to write a letter to me… when she got back from holiday.

I tried to tell myself that I had been content for 2 years a few more days wasn’t going to make much difference, but one frustrating morning, having been out on my bike on a fruitless errand, and been hailed on on the way back, i arrived home for the first time rather cross that this was my lot. A simple errand that would have taken 10 minutes by car had taken all morning.

I dumped  the bike and head in to thaw out with a cup of tea. And there it was in the mailbox.

I DID IT. I outlived the stupid DVLA rules.IMG_0557

I suggest, if you have a GBM (or similar) you do it too – it’s not so difficult. It takes no special talent. Maybe if we all do it they will change to stupid rules. Refusing to let us drive ‘in case of a fit’ is a bit like not allowing us to lock the bathroom door incase you have a fit in the bath. Oh, wait, I did get advised to do that … but FOR THE FIRST  WEEK AFTER SURGERY, NOT 2 YEARS!!

The ‘Wall of Hope’

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I went to the Blizzard Institute this week to help out with a fundraising initiative. A major donor was visiting and I was representing the ‘face’ of the patient. A few photos and another opportunity to see this amazing centre at work and to say thanks to the donors (in this instance the Freemasons, who are regular supporters) and of course the researchers who are the unsung heroes behind the scenes.

This is (a small section of)  the ‘Wall of Hope’ in the institute where donors, whether big names of small groups, or families giving in memory of a loved one, can have a plaque placed on a brick. This is just part of the huge wall and the aim it to fill every brick, each of which represents a day of research ( £2,740). The charity needs to raise £7million pounds each year to fund the centres of excellence they are establishing around the country to try and get to the bottom of this disease and put a stop to the misery it causes.

blizard_building_nw260610_10My earlier visit to the Blizzard institute (pictured right) is written about in my blog “Inside a nerve cell at the blizzard centre”

If you want to know more about the centres of excellence (or make a donation)  check out the brain tumour research page  here.

 

 

 

Why Me? (Scan news!)

imageFeeling very humbled and un-deservedly blessed. Another clear scan! 

The 2 year anniversary of my surgery was 17th March 2017, and today I got my latest scan result.  “No evidence of recurrence”.

Thinking back to those days in March 2015, when ‘Bob-the-blob’ sat defiantly in my left cerebral hemisphere and a dismal prognosis of 12-18 months seemed an unlikely  long-term target  to aim to outdo , I am astonished that I have somehow walked undaunted through these two years, sustained by a faith, hope and expectation that seemed little to do with my own efforts.

This has been no act of bravery or courage on my part. I just put one foot in front of another.  And on that walk, I have experienced profound joy, all encompassing love, unprecedented medical success, and a complete change of lifestyle that has surprised and delighted me.

Some people when faced with bad news ask ‘Why me?’ At this stage, outliving prognosis and feeling so blessed, I have to wonder from the other side of that fence –  ‘Why me?’ The answer in both circumstances is the same – ‘Why not  you? You don’t deserve  it, you don’t earn it, it’s a free gift. For better or worse!’

That’s grace.

At this point in time I can only give thanks  and sit in awe and wonder at what a “terminal-cancer” diagnosis can accomplish in the hands of an awesome,  almighty, exciting, unpredictable, all-embracing, all-sustaining, highly entertaining and ultimately all-loving God.

Bring on the next challenge!

Happy days!

xxxxx

 

2 years since surgery.

On 17th March 2015 I underwent awake surgery to remove a grade 4 glioblastomamultifome (GBM). I emerged with no more than a slight speech defect, thanks to the amazing skill of my neurosurgeon, Mr Puneet Plaha of the John Radcliffe Hospital in Oxford. I spent that night in hospital and awoke to discover i couldn’t spell my own name. Puneet was very amused at my attempts at texting and assured me that is was temporary.   Two years on, on 17th March 2017, in a wine bar with friends, I celebrated the fact that I am wonderfully well, have little or no speech deficit and can write this blog with little more than a nudge here and there from spell-check.

My lovely friends bought me Nettie, who came out to the wine bar with us and is happy but tired. I think she is going to be a great asset to the family.

IMG_0402

Memory, cognitive scores and wrinkles!

IMG_0355I have now completed a 3 week course of HBOT (hyperbaric oxygen treatment) and a further month with twice weekly sessions. My aim was to halt the ‘brain fog’ that seemed to be happening as side effect of my radiotherapy. I was quietly hopeful, having read the research, but I measured my response during therapy just to be sure I wasnt kidding myself that it was helping. (An hour spent in a tin can is a waste of time unless it is doing something.) You can read my earlier analysis and explanations about that HBOT  here and see my earlier blog post for a cute pic of a monkey having HBOT, but below are my latest results.  Oh, and my friends say I look years younger and can they sign up for it!!!

Make up your own mind:

 

 

Image 13-03-2017 at 00.03

 

 

Scummy wine?

IMG_0366

Looks disgusting. Actually it’s one of my better ones: beetroot, kale, broccoli, cucumber,  apple, ginger and a touch of orange.

A great way to start the day. Apart from being full of antioxidants and vitamins etc, it makes you feel as if you are really doing things right. That feeling is never to be underestimated. Taking charge of your own health and wellness, expecting results and enjoying life to the full. Pure healing that can’t be administered in a pill or a drip.

Ailing immune systems

This page (click here) is for my new friends at the MS centre (see HBOT), some old friends and many others I have been ‘bumping into’ lately  who all have auto-immune disease (eg MS ME  diabetes, DI, asthma, lupus, polymyalgia, rheumatoid arthritis, Chron’s, coeliac and the list goes on…)

United we stand in trying to sort out and support our ailing immune systems.

Divided we fall – In cancer the regulatory system is overzealous and stops the immune cells from controlling the cancer – in auto immune disease the control is off and the immune system runs riot and turns to attack the good cells!

Come on boys, behave!

Hooray for Turmeric, green tea, oily fish, resveratrol (red wine and chocolate!) and lashings of good old probiotics.  Pass the kombucha*. That’ll whip ’em into shape.

(for more foodie  tips read the link above and the nutrition and supplement pages.)

*A type of fermented tea rich in antioxidants and good bacteria

Chocolate Concrete (low carb of course)

Thanks to recipe from school dinners that an old girl posted on the school FB page I have IMG_0321recreated a favourite pud in low carb form! And oh my word, it’s even better than I remember it. The one at school was hard (hence its nick name) but this comes out softer. No bad thing!

200g plain flour -> replace with 200g almond flour

100g melted butter -> lovely as it is

50g cocoa powder (not drinking chocolate that’s too sweet)

100g sugar -> sweetener of choice … to taste  (dip your finger in to test!)

and I added in a few chopped nuts and as scant sprinkling  of finely chopped unsweetened apricots.

Mix and press into a greased lined tin and bake at 170 C for about 20 mins.

Eat hot with cream or cold as a snack. That will set you up for an afternoon’s double chemistry! Or something to look forward to after HBOT (see previous blog post!)

[Sorry about the photo it doesn’t look very appetizing, but it didn’t at school as I remember. Appearances can be deceptive.]

 

HBOT (Hyperbaric oxygen therapy)

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This is not me!

However, I have spent my mornings this week doing this.

It’s called hyperbaric oxygen therapy. HBOT for short. And it involves going into a big cylinder that is pressurised above atmospheric pressure and breathing 100% oxygen for an hour a day. For a more extensive account of the therapy and  how it works see my page on the subject here.

The idea is that your blood becomes very oxygen rich which has all sorts of benefits, especially for the brain. The centre I am using is the Chiltern MS centre, which is very convenient for me and, being a charity, is not too extortionate. It is very beneficial to MS sufferers and this is the focus of their work but it is recognised that it helps a wide range of people and so a small proportion of the sessions are released for non MS patients. The type of patients who use it are people who have brain injuries, general injuries and infections, ME sufferersf, diabetics etc. I am fortunate to be able to be accommodated and, I must say, the centre is a fantastic facility.

I attach some interesting articles below if you want to know more about the therapy. I am monitoring my own response to the treatments, which will be daily for 3 weeks  (week ends off) so I will let you know the outcome in a few weeks. Although it is supposed to be beneficial for cancer, since Bob has gone, my main interest is in clearing the ‘brain fog’ that is evident on the MRI scan and caused by the radiotherapy rather than the tumour. It is what has made me more forgetful than I used to be and although everyone says it’s no more than someone ‘of my age’ might expect, I’m a bit  miffed by it because I know I hadn’t used to be like this a couple of months ago. This ‘brain fog’ is well-known to those of us who have had our brains irradiated. Of course it’s a small price to pay to keep Bob at bay but nevertheless, if I can halt or reverse it, I will be delighted.

It will be interesting to see if it helps my speech, spellings and maths, but since that is due to the bit that is missing after surgery, it would be a real surprise and added joy if that improves.

Here are a few articles to give you more information if you are interested.

Hyperbaric Oxygen Therapy. (a good overview of what HBOT is and does.)

https://www.hyperbaricoxygentherapy.org.uk (The Hyperbaric Oxygen Treatment Trust)

Hyperbaric oxygen therapy for radiation-induced brain injury in children (research article)

Radiotherapy  And Hyperbaric Oxygen In Head And Neck Cancer: (Lancet article.)

Hyperbaric oxygen therapy and cancer—a review (scientific review.)

The Ketogenic Diet and Hyperbaric Oxygen Therapy Prolong Survival in Mice with Systemic Metastatic Cancer. (research article.)

My cancer story (Andrew Scarborough). (Blog on the experience of HBOT by a GBM sufferer.)

 

 

A message to the DVLA.

I have sent off my application to get my licence back!*712b43e7a13058da986393970ea14dc5

 As I sealed the envelope and stuck on the stamp (first class of course) I found I was smiling from ear to ear. I guess, you have to have been told that you have about 18 months to live and (stupidly) you are not allowed to drive for 2 years, before you can appreciate how much of a joyous milestone this seems.  Of course it may take a considerable time before they (The DVLA)  reply, despite there being a singular lack of anything interesting to report that might make them worry about me (no fits, no faints, no squints, no tremors, no palsies, no meds, no anticonvulsants, no nothing… only a tiny hole in my brain.)

I imagine some minor official quizzing me – But you are supposed to be dead, or disabled, or paralysed or on so many drugs that you need to be strapped to your chair… aren’t you? Nope. Surely, if we allow you behind the wheel, you are likely to lose consciousness, or your marbles… Nope. But people like you have to have carers to help you across the road, never mind drive… don’t they? Nope. Your doctors will surely put a stop to this mad idea… Nope.

So….

DVLA PLEASE GET OFF YOUR BACKSIDES, STOP MAKING EXCUSES AND GIVE ME MY DRIVING LICENCE BACK!

Thanks

Big hugs.

xx

*Afer a craniotomy there is an automatic driving ban for a year because of the risk of fits. (20-50% of brain tumour patients have at least one fit after craniotomy and prophylactic anticonvulsants probably do not help) If you have a high grade tumour the driving ban is increased to 2 years. This might be a sensible precaution if the patient is likely to black out without warning. I just find it a bit harsh as I never had a fit at any stage and never has so much of a whiff of an anticonvulsants drug. I put this down to my well behaved brain, the skill of my surgeon, and my healthy nutrition and supplements in particularly the boswellia which keeps any swelling at bay and the curcumin that apart from having anti cancer action also may have anticonvulsant  properties.

Refs:

  • https://www.ncbi.nlm.nih.gov/pmc/journals/
  • Cancer. 2011 Aug 15;117(16):3788-95. doi: 10.1002/cncr.25945. Epub 2011 Feb 1.J Neurosurg. 2016 Jun 24:1-7. [Epub ahead of print]
  • Life Sci. 2010 Nov 20;87(19-22):596-603. doi: 10.1016/j.lfs.2010.09.006. Epub 2010 Sep 16.

Reigning cats and dogs.

img_0037This morning my cat came and sat on my chest and stared me in the face until I opened my eyes and acknowledged that it was time to get up. She had spent the early part of the night curled up in the crook of my legs as I went off to sleep. Later in the night I was aware she had generously moved to the other side of my bed to give us both more room. She spent some of the night sleeping with my daughter and some with my brother who is bedded down on a sofa bed downstairs. Only a temporary guest, but she is accepting of his presence and generous with her affections; if we love him, she will. The only person she didn’t spend time with overnight is my son who sleeps in a smelly attic room and always chases her out at the first sign of her popping a curious head above the narrow top step.
It got me to thinking: cats seem totally confident that they are important, that their role in the family is crucial and that they are loved by everyone. My cat only imposes herself on those she thinks will appreciate her. My son, who does not like to sleep with her or entertain her in his room will nevertheless play with her and cuddle her downstairs and this she accepts graciously despite his lofty nocturnal hostility.

The dog, similarly, accepts with deep joy any attention he gets. He is affectionate to anyone who accepts his enthusiastic company yet tactfully and without grudge abandons his efforts if someone rejects him. He is a bit soppy and would probably welcome burglars in the same way, but is so loving that the burglar would probably think twice about robbing his family.

Oh, that we would take a leaf out of the animal book!

To believe that we are so special and so loved and to return that love with abundance; not to take personally any grumpiness aimed at us and to forgive and forget instantly. Confidence that we not only have a role but that it is uniquely important. To believe whole heartedly that what we do is worth doing even if not a single soul notices or agrees. To value and absorb any drop of love or affection coming our way yet not to crave or strive for it. To be as happy to curl up nearby and be ignored as played with and heaped with praise, yet be ecstatic with the praise and adoration if and when it falls on us. …and to be utterly confident that it is well deserved. No pride, no resentment, no regrets, no insecurities, no self loathing, no guilt. (Yes, I know dogs look guilty sometimes but I have read research that says this is not true guilt; they don’t understand guilt and are only reflecting our expressions and responding in love to training when they jump down from the sofa and put on the ‘look’ when they hear us coming.)

But sadly we are human. We over analyse everything. Ever since we ate from the Tree of Knowledge of Good and Evil we have been constantly in a quandary. What is best for me, for him, for her and whose needs trumps whose? What is right and what is wrong? What is the evidence that will give us a clue to the unanswered questions? And is that evidence reliable? What will others think? Is what they think valid or important? What am I to do, to be, to believe?

The antidote to this?

Know for certain that you are loved.
And just love back… expansively and joyously in all situations.
Know for certain that you are important, you are valued and you are uniquely suited to your place in the world… just as you are.
Simply put (in the words of Bobby McFerrin): don’t worry, be happy.

You don’t need to be more cat.
Just be more you. It will be enough.

What does this have to do with Bob the Blob? Nothing. Sometimes life is more than a cancer story. No, life is always more than a cancer story, it’s just that sometimes we forget that things we learn on that journey are meant to be applied to life in general.

Happy 2017.

Mince pies (too good) for santa…though he could do with the low carb!

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When I came to cook my mince-pies this year I used this pastry recipe from ‘The Team Hannah * cookbook – recipes for a low carb lifestyle’. She uses it for quiches and pies but I put it in the patty dishes for the mince pies. I put a tiny circle of greaseproof paper in the bottom to stop them sticking. When I put them in I thought it would never work because it is so sloppy, but also coarse from the flaked almonds, and you have to mould it into the patty tin. I thought they would all fall apart below the fillings or get stuck in the tin. But I pressed on and baked the pastry cases (180 c) it until just browning at the edge (about 10-12 mins) before cooling then filling with the mince and a generous topping of the frangipan (see below) Then they go back in the oven until frangipan is set and golden (takes about another 20 mins). It worked! And is AMAZING – crispy base and soft top, melt in the mouth – heaven! “The best mince pies I have ever tasted” (and that quote was not me!) I thought my recipe from last year could not be bettered, but Hannah’s pastry with the almond flakes makes it even better. Eat warm with cream.

Pastry ingredients

100g ground almond, 125g flaked almonds, 125g softened butter, 2 eggs beaten.

instructions

mix. press into tins. bake as described above.

filling:

30 g no-added-sugar sultanas (i wash these well then marinate these in a little brandy or sherry! But you can use a little juice from the clementine or an orange) you could use other fruit. I throw in few finely chopped no-added-sugar-organic dried apricots (also washed and soaked)
20g chopped apple with peel on
half a clementine finely chopped
orange zest (optional)
A small handful of chopped nuts (to taste)

Topping:

3/4 cup (85g) almond flour
1/4 cup (55g) softened butter
1 large egg
sweetener to taste. (This is the same as the pudding in recipe 6)

Instructions: Once the empty cases are lightly baked, fill them and place a dollop of topping on each one and bake again at 175 for about 8 mins or until set and browning slightly. Serve with cream or coconut cream.

They also freeze well.

(carb is about 6g per tart. Fat is about double that (not counting cream) and protein about 2g. This is a guess. It’s Christmas, I can’t get too het up about figures.)

image* Hannah Bradley. 5 years cancer free this year from GBM.

Scansgiving…

That time came and went… Again! And, whoop whoop, the scan is clear! ???

Though I have been promoted to 4 monthly scans, it still means 3 scans a year for the next however many years. Now I realise that the NHS is budgeting  for between 2 and 9 more scans  before I am no longer a drain in their resources, but i’m looking at more in the order of 150+ scans. So unless there is a cut off point beyond which they stop bothering to scan (are we allowed to be ageist in the NHS there days?) or unless they start to belive me that Bob is gone for good, I am going waste a 180 days of my life (and their time) with my head in a machine that goes BONG BONG BONG BONG BONG…..

Sigh.

Still, on the plus side I will have 180 more days of celebration and jubilation. Yesterday (scan result day) I went out for lunch with best buddy before shopping spree, then out for dinner with family. And because it is a ‘special occasion’ all sorts of slightly naughty treats were allowed. I am so lucky. How many of us get 3 regular scheduled celebrations a year on top of all the usual public holidays?

I decided it needs a name:

? scansgiving! ?

Inside a nerve cell at the blizzard centre

Lecture room inside a nerve cell!

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I had a fascinating afternoon being shown round the brain tumour research facility inside the Blizzard Centre (Queen Mary University of London) earlier this week. This futuristic looking black spiky structure on the left is actually a lecture room in which wich we were treated to a presentation by the scientists and doctors who are funded to research into brain tumours. A small team of enthusiastic scientists, supported by the Brain Tumour research Charity,  work in this amazing building dedicated to medical research. (The ‘brain section’ is only a tiny part of it)

We were told about the advances into understanding brain tumour tissues, in the genetic and epigenetic fields. This work is of fundamental importance if we are to better understand and  advance the treatment of glioblastoma, which still has dismal prognosis and remains little appreciated by the general public.

FIHA-0022-0001The labs were impressive and the building inspirational. Apart from the spiky neurone, the ceiling is festooned with coils of DNA and other ‘pods’, such as a mitochondria shaped meeting room and an educational centre, designed to inspire young people in the field of medical reasearch. It is housed in a big orange ‘nucleus’, also suspended from the ceiling. You can see it here with a bird’s eye view of some of the research facilities.

We certainly need all of this to put brain tumour up there with the ‘popular’ cancers. Little known, poorly appreciated, abysmally funded, it is no wonder we are still dying and families being devastated. Many sufferers are young adults with small children and many young children themselves are dying. But it doesn’t stop there; this cancer does not care who it choses – just because you are developing wrinkles like me don’t think you are immune…and unlike most cancers, is actually on the increase.

If you want to give or support the research google “The Brain Tumour Reasearch charity”  or go to my just giving page.

Ch 4 video on brain tumor reseach

Here is the link to the brain tumour item on Cannel 4 news.http://bcove.me/vag50u3b

Yesterday A channel 4 film crew came and filmed me as a “sufferer” to illustrate the news item on how poorly funded and little known Brain tumours are. The message that it kills more under 40’s and children than any other cancer. I did point out that I was neither under 40 nor a child, but they still wanted to film me! hey ho!

It was great fun and I am delighted that the awareness and funding drive got over 4 mins of air time on prime time TV.

The charity has published a report to illustrate their concerns. THe whole report can be read here

Here are  just a few interesting stats from the report: (do not read if you are easily depressed!)

Survival

  • Less than 20% of brain tumour patients survive beyond five years of their diagnosis, whereas 86% of breast cancer and 51% of leukaemia patients survive beyond five years
  • The causes of brain tumours are not understood and less than 1% are preventable. For leukaemia and breast cancer 15% and 27% cases respectively are preventable.

    One year survival
    The latest 2015 data shows that brain tumour prognosis continues to be devastating with less than half of patients surviving one year on from diagnosis. One year survival has improved over the last ten years but at 46.5% is still below the survival rate of ten years ago for leukaemia which was 60.2% (now 68.7%) and breast which was 94.4% ten years ago and continues to improve – now 96.4%.

    Five year survival
    Less than 20% of brain tumour patients survive beyond five years from diagnosis. This is still significantly behind the five year survival rate for both leukaemia and breast cancer patients from ten years ago. Today 86% of breast cancer patients survive beyond five years and now over 50% of leukaemia patients are expected to live beyond five years from their diagnosis.

    Ten year survival
    According to 40-year trend data by the London School of Hygiene & Tropical Medicine: for those diagnosed 2010-11, it is predicted that 79% of breast cancer patients will go on to survive beyond 10 years, for leukaemia it is 46%, yet for brain cancer it is less than 14%.

    Brain tumours cannot currently be prevented because their causes are not yet understood. Less than 20% of brain tumour patients survive beyond ve years compared with 50% for all other cancers and treatments for brain tumours lag seriously behind other cancers. At the current rate of spend it could take 100 years for brain cancer to catch up with developments in other diseases.

Channel 4 news

canal-wide-lrThe brain tumour research charity is being featured on Ch 4 tomorrow night (tue 11th) at 7pm. They are trying to rise awareness about the devastating effects of brain tumour on young families and children, the dreadful prognosis and lack of funding.

A Ch 4 Team came and filmed me and my dog Murphy today asking about my story (which Murphy was happy to comment on, but did somewhat hog the lime light!) so we may feature.

(Pic of our recent canal walk)

Have a look tomorrow and spread the word.

My just giving site is still active if you are moved to donate, and to help spread the word.

https://www.justgiving.com/fundraising/Tanya-Malpass1

and a link to the charity is here:
https://www.braintumourresearch.orgFinish.YAY

 

new page loaded : looking back.

I have written a  page summarising my medical treatments, entitled “looking back, what it was really like…”.  In it I try to be serious for once and describe how the process works and what you can expect if you or someone you know is going to have to go through something similar.

I have done this because some people want to know the gory details that they may not tell you in the pamphlets that the hospitals dish out. But don’t be put off… IT’S REALLY NOT SO GORY! (Well, if very squeamish you may want to skip the description of what it looks and  feels like to have your brain opened up whilst awake).

I hope knowing ‘how it was for me’ will satisfy a curiosity at the very least, and may alleviate anxiety in some who are going through this, or have loved ones going through it.

You can read it here…  or not at all if you’d rather!

 

Enjoying ourselves to raise awareness!

img_0034Yesterday I went on a fabulous 11 mile canal walk with my friends to raise some funds, but more importantly awareness in aid of the Brain Tumour Research charity. We were in the company of a huge crowd of supporters, some who had brain cancer, some who were supporting brain tumour patients and many who had lost a loved one to this horrible disease, which is the biggest cancer killer in under 40s and in children.  I would be enormously grateful if you could share this fact with your friends acquaintances. Point them to the charity or my just giving page and for a bit more info see my awareness page. 

Or get them to take out their phone there and then and text BOBB59 £5 to 70070 to instantly give a fiver, or whatever they like, to the charity.

Thanks everyone.

Rant coming on: nay-sayers strike again.

Sorry folks, I have just been reading an article about a great guy who is living with G4 GBM and getting on with living, doing well, seems to be beating the stuffing out his tumour using standard treatment supported by healthy lifestyle and diet which happens to be ketogenic. A really uplifting story.

What’s got me angry is the comments posted. Things like:  ‘don’t build up false hope’ and ‘diet has nothing to do with it’ and some really nasty supercilious quips that are really designed to put the article and the guy down. These people are HOPE-SLAYERS. There is plenty of evidence that shows that in terms of outcome and prognosis, words matter! And these are nasty, negative, destructive words.

I can’t tell you what gruesome fates I am imagining for these people right now, which is un-helpful, un-christian and understandable. I shall simmer down in a bit and think peaceful thoughts, but for now I am going to post an excerpt from my book (in progress). It is from a chapter entitled ‘Living with Hope’ in which I am advising what to do when stupid people try to rob you of your hope and so jeopardise your healing. Because, yes, that is what they are doing by their nasty little nocebo digs. We need to be prepared!

“… beware! If you find that hope, and start to live in its ever-expanding joy, you will meet opposition. I mentioned some of this in chapter 4 (hope-slayers) and there are other, untold ways to have hope snatched or shaken. They may settle slowly like a marsh mist. They may slither and strike like a rattlesnake. They may descend relentlessly like a plague of locusts and strip you bare. You need to be prepared!

My firm advice is to find an emergency strategy with which to easily and promptly dispel them before they take hold. My own formula is recounted on the blog page: ‘Eyes above the Waves’ but you must find something that works for you. However, I urge you to make it a peaceful resistance: a sense of sinking into a safe, comforting refuge rather than taking up of arms. The bible has a fantastic metaphor for resisting ‘evil’ attack (enemy propaganda – the nocebo effect in all its gruesome forms!) It says ‘put on the belt of truth, the breastplate of justice, the shoes of peace and the shield of faith’. (Eph 6:13-16) In other words: holding on to true, good, and encouraging thoughts, words and deeds, walking in quiet confidence, with faith in your own strategies, are the best defence against the ‘nay-sayers’ that threaten you. Note the metaphors used are all defensive strategies, not offensive weapons. The only actual weapon we are told to hold on to, it is the ‘sword of the spirit’ (Vs 17) and this too is used in defence not attack. You see, the only weapon that we need to defend our refuge, when the poisonous pessimists attack, or savage storms shake us, is not human argument, not documented evidence, not reasoned ‘logic’ – it is spiritual wisdom. That is because the attack is not physical either, the words used against us attack our mind, our beliefs and our faith. The ‘sword of the spirit’ is about being still and knowing – not fighting. It is about resting, in the certainty of the hope that we have.

For many, that is about an unshakeable faith in the promises of God, the things that allow us to have faith and hope and healing. But even if you are not at that place, or of that belief, just know this: the hope you have does not need to be fought for. If your hope has been properly established – through the quest for real possibilities, in which you can place trust and faith – then the hope you have will be within you; it is for you personally. It has transcended reason, evidence, logic; it no longer needs to be explained or argued. It rests on truth and truth needs no human hand to uphold it. (Watchman Nee)

You won’t have to strive to get it. You will know it when it finds you.

Note that I never advocate violence. I try to never use the words ‘fight’ or ‘battle’ in my encounter with cancer. Many people do (as in: ‘she lost her battle against cancer’). To my mind, it conjures up far too much stress inducing emotion, and gives entirely the wrong impression of what the tumour is. It is not a monster, or a mutant, or a rogue; these are words that popular science often uses. I don’t find it helpful. Your tumour is part of you. It contains all your own cells. They have simply begun to malfunction. They are sick. They have lost the ability to run their metabolic processes efficiency, to divide, to work and when their time is ripe, to die. In chapter 2 (sweeteners) I described them like naughty children who need attention and love, not punishment. And like naughty children, it is often we, the parents, who have made mistakes that contribute to the behaviour, or the environments we have unwittingly led our children (and ourselves) into, that make normal behaviour nigh on impossible. So treat your tumour cells with compassion. Wherever possible heal them not kill them.

We know that there are cancer cells circulating in our bodies all the time. Our own policing system (the immune system) takes care of them and they may never grow into tumours. Other tumour growths are ‘pre-cancerous’ and some of these will spontaneously revert to normally functioning cells if left well alone. We live with cancer cells all the time. It is normal and natural. What is not normal is the toxic, mineral and vitamin poor, metabolically unsuitable environment we have turned our bodies and minds into: an environment that cripples our immune system, paralyses our mitochondria, poisons our blood system and corrupts our minds. Added to this is the defective programming of our subconscious over a lifetime, which forbids us to see ourselves as whole and perfect human beings. Poor Bob! How can we nurture heathy cells in that mess?

Befriend your tumour. Find out why he has become stubbornly disruptive. Not that we should approve of his ‘deviant’ behaviour but we should manage it with non-violent resistance. Rectify the situation, (through whatever treatments are needed to remove the disruptive parts of your ‘Bob’ and make improvements to the environments in which he has taken root). Make peace and harmony. Restore hope. Believe in your healing.

And when the storms of enemy propaganda hit you, and you feel them threatening to shake your peace, just keep your eyes above the waves and keep on walking.” 

Rant over. I shall now go and take my own advice. I shall play a chorus or two of ‘Oceans‘ in memory of Bob, bless his cotton socks, whilst tucking into slice of ketogenic pie (see recipe chapter) and a nice cup of ginger green tea.

Peace restored.

 

Inspiring video: beyond surviving

Sophie Sabbage is an amazing lady who inspires so many people with her messages though her book “Cancer whisperer”,  her blog and her videos. How she manages to do this despite being herself in the throes of intensive cancer treatment is in itself a miracle.

“When everything is blacker than black, there it is: The light of the spirit? Of faith? Of bending into Reality and glimpsing God dancing down the street for joy?… I am as riddled with miracles as I am with tumours. Somehow these two are bedfellows, not adversaries – part of the same deal.” Sophie Sabbage 

Watch and be inspired:

sophie sabbage beyond surviving

Scan again (yawn)

Scan (April on left and July on Right)
Scan (April on left and July on Right)

Yes, yet again another cycle of sanxiety and jubilation is over. The Bob shaped hole is still there and looks the same (according to the report). Personally I think it looks a bit tidier. I have been visualising it being dusted and cleaned ready for a new skim of neuronal filler. Next one i expect it to be filled in and for the new cells to be fully functioning, talking and spelling even better than the old ones.

The picture above shows the last scan on the left and the latest one on the right. If one of my ventricles (the pair of holey looking things in the centre) looks a bit smaller than the other it’s only because I had my head quizzically cocked to one side in the scanner! (Silly me)

The  good news (apart from the fact that there is no sign of Bob) is that they are letting me go 4 months instead of 3 before the next scan! Hooray, are they actually starting to belive me when I say Bob is an ex-tumour, he has popped his cloggs, he is no more, he has gone to meet his maker, R.I.P Bob.

 

Three months to live?

imageNO, don’t panic! Not literally! I’m still insanely well.

It’s just that I was thinking, when I was on the train to Manchester the other day for my son’s graduation (yes we had a fabulous day, he got a first, and 3 awards, just have to slip that in!) Having only had my last scan the day before, and still awaiting results, I was musing on what the adventure was to be for the next period before the next scan. In the last three-month spell I went to see my daughter in LA and visited friends in Vancouver,  the previous window between scans housed a ski trip and the one before that a holiday in  Morocco. That’s a great life lived in 3 monthly spans.

It’s disgraceful that it’s been nearly 3 months since my last post! But as they say, no news is good news: it’s partly because first of all, I’ve been too busy enjoying life, and secondly,  my latest writing project, (more about ‘the book’ anon) has eaten into blog time. Where has the time gone? 18 months from diagnosis, 17 months from surgery, 7 months since all treatment was declared finished and two clear post-treatment scans behind me. And now the three-month scan is here again. So soon!

The three-month deadline is very good at motivating you to get on and BOOK those things you  want to do, but the scans are getting a bit monotonous now. Last time I described ‘scanxiety’ and I’m not pretending that there won’t be any of that when result clinic day looms in a couple of weeks but the scan itself is no longer any big deal. It’s  merely a regular annoyance like a dental hygiene appointment (but less uncomfortable) or hairdresser’s appointment (but cheaper). And who limits their plans to tie in with their hairdresser’s appointments?

Thanks to the epiphany on the train (on the way to my son’s graduation, did I mention that?) I have realised this has to stop! More or less unwittingly, I have each time not wanted to book anything major for further than 3 months ahead. Why? In case there is a recurrence? In case I have to go back onto treatment? Because it’s considered  the sensible thing to do?   Well, only if you want to buy into the statistics! Do I believe I am going to get a recurrence? Most definitely not!  And what’s so critical that the scan dates can’t work round me, not me round them? I am a person with a life, not a professional patient. I have absolute faith that Bob is banished, so this new understanding is a surprising new added joy. I have come to see that far from being the sensible thing to do, not  acting in accordance with my beliefs is the crazy thing! It was as if I was suddenly given permission to plan a life ahead without acting as if I have only 3 months to live. Tee hee!  It makes me giggle. Silly me, why did I only just realise this?

Because it has been a very useful lesson!

Of course! Having all of life to live doesn’t mean I can’t do something amazing in the next 3 months or the next week or tomorrow, and the last few months have been training in how to just get my act together and JFDI (I’m told this means ‘just forgoodnesssake do it!’) Another lesson learned and skill acquired:

live life as if you only have 3 months to live, plan as if you have forever.

Best of both worlds. Thanks again Bob!?

image

(Danny is the one jumping highest!) Dan, enjoy your next three months and the rest of your great future ahead, may you always jump highest. ?

Couldn’t have said it better myself

I usually put helpful links, articles and videos up on the pages to which they belong. For example, nutrition or research or links and quotes. But this little review of 5 things to do to combat cancer sort of covers it all. Next time someone crosses their eyebrows at me and asks ‘What the….?” as I try to explain my diet, my lifestyle and my hopes and my expectations, I can just point them to this.

Thanks, Dr Mark Hyman.

http://drhyman.com/blog/2015/08/07/5-strategies-to-prevent-and-treat-cancer/

 

Scanews (good!) [Ugly seeds and beautiful flowers]

As the euphoria of yet another clear scan yesterday sets in, I am as ever reminded that others are receiving different news. Some of my group of radio-rebels with whom I am still in touch are moving on happily with ‘remission/cure’ labels while others are still battling with rounds of chemo and ever more scans, and still others treading the tightrope of ‘so far so good!’ A blogger I follow, and author of the brilliant book ‘Cancer Whisperer’ has herself just received bad-scanews. She is an amazing lady who has achieved so much since he ‘terminal’ diagnosis and comfortably outwitted the statistics. I have no doubt that she will bounce back from any ‘knock’ she has felt from this and put it to good use.

image
It got me to thinking: a life lesson we all need to learn is that events may appear positive of negative but they are all there to be used for good. Whether I had received good news or bad yesterday it would still lead me on to the next day of my life and each new day is to be relished, enjoyed and treasured.  Every life event is a seed that can be nurtured or thrown in a drawer to rot. I plan to plant them all, some may bear fruit, others may merely look pretty for a while and then fade, each still has a purpose  to be enjoyed. Sometimes from the ugliest of seeds, grow the most beautiful flowers. image

So thanks to all of you who have celebrated my good news even though you may not have much of your own at the moment, and thanks too to those who have shared my scanxieties and celebrated exuberantly even though you have no such worries and could  well have moved on and stopped caring. This is what a caring community does, and as we all know, one of the important factors in improving prognosis is to have a community of supporters around you. I am privileged to belong to you all.

The Lotus flower bestows her beauty and fragrance upon all those who stop to appreciate her as equally as those who do not. She never closes her petals in grievance for not being noticed... If we can learn to shine no matter the circumstance, to accept and respect the path of others regardless of how different it may be from our own, to not require anything in return for that which we give, then we can become as the Lotus – dazzling and without a single trace of fear.

(from http://spiritualjourneyguide.com/2013/05/29/the-lesson-of-the-lotus/)

 

Scanxiety

κομπολόιFortunately I do not suffer too much with this, or indeed any form of anxiety. (Whats the point, most consequences wont be worse than having brain cancer!) But I love the word and totally know what it means. It was given to me by a fellow brain tumour sufferer who I met yesterday at “Brain Trust meetup” in London. (A marvellous organisation that exists purely to support sufferers and their nearest and  dearest. Google “meetup braintrust” or check this link )

We were discussing the feelings we all experience to a greater of lesser degree as the next scan looms. I know some people get very anxious as the time comes round again and they run through all the possible scenarios. You can imagine what they are, I don’t need to spell it out and I am not going to because that would be very negative, something I have learned to eliminate form my life as far as possible. The only scenario I am preprepared to dwell upon is a vision of of the oncologist saying “Wow, I can’t believe how normal this scan looks. There is no visible sign of tumour. I can’t understand how quickly and completely you seem to have recovered. But whatever you are doing, keep doing it and I’ll see you an another 3 months.”

So, instead of giving scanxiety a foothold, I am going harp on (again) about the power of hope and expectation. We all have hurdles in life. Imagine a top olympic hurdler. Do you think that they look down the row of hurdles ahead of them and imagine themselves falling over them? Do they stand at the start line muttering to themselves ‘Don’t knock them over, don’t trip up, don’t pull a muscle?’ Do they spend the morning discussing with their spouse/mum/friend,  who in the competition  is in so much better shape to run the race and who is going to leave them standing?  Of course they don’t. They spend time with encouraging people who affirm their ability, give them last minute tips for success. They limber up mentally and physically, telling themselves this is what the training has all been about, they are ready, they are winners in the making. They believe in themselves, their training and ability, and firmly believe it CAN be done.  All other things being equal, these are the athletes who win! Not those  who start the race in doubt and fear.

We need to be like those winners. Another scan: another opportunity to demonstrate our amazing progress. All that expert treatment, heathy eating, exercise, meditation, prayer, green juice, laughter or whatever you have indulged in and put faith in are about to be vindicated. When lesser mortals have expressed doubt that what you are doing will make a difference and you have steadfastly stuck to your resolve, NOW is the time to celebrate the awesome, indomitable being this journey has turned you into.

Scanxiety is natural, but like exam nerves, a little spurs you on, too much is counter productive. So enjoy the big day and look forward to the euphoria that is the natural byproduct of relieved scanxiety.

Everything has a purpose!

(FYI my next scan result is 20th April.)

Things to do before the next scan

Be still....
Be still….
Hike with friends
Hike with friends

When I moved from monthly rounds of chemo, blood test, oncologist, to the dizzy freedom of three monthly scans I got an insane urge to DO things. As some points it seemed a bit frenetic as I booked back to back ‘happenings’ but apart from the odd packing and washing disaster it has all been marvellous. Here is a selction. I thoroughly recommend doing something like this rather than counting the days to the next hospital visit. (The novelty of those is well past)

Take up pottery
Take up pottery
Get some sun
Take a boat trip
Do a workout on a Spanish beach

 

Build a sandcastle (Ok, this isn't mine)
Build a sandcastle
(Ok, this isn’t mine)
Go skiing
Go skiing
Be on top of the world
Be on top of the world
Do an obstacle race
Do an obstacle race
Win a medal!
Win a medal!

Go Team Bobstacle THIS SUNDAY

http://youtu.be/R9UEE84ZVT4

This Sunday, 13th March at the Chiltern Open Air Museum: Nine of us are planning to do the “Chiltern warrior” race: 5k of mud, water, hills, ditches, scramble nets, tunnels, walls and other feindish obstacles, all in aid of brain cancer research. This is the type of thing you decide to do when you have a hole in your left temporal lobe where a  tumour used to reside.   (Thats my excuse, the other 8 are just unfortunate enough to be very dear friends who have to humour me)

Thany you, thank you, thank you: Lucy, Julia, Lucy, Kati, Bernie, Susie, Annie and Cathy. You are bestest friends. And thank you everyone who has donated so generously on my just giving page.

There is still time to support us and please cross post because we need to raise awareness that brain cancer is the biggest cancer killer of under 40s and children and yet gets less than 1% of the allocated research funding.   Someone need to change that…. Oh that would be us then… With a little help from our friends… And friends of friends… And friends of friends of friends… Etc.

A petition had gone before parliament and we are now working to get an early day motion to discuss this unfair level of funding. Please read about how you can support this campaign here.

Looking forward to getting muddy on Sunday.

GO TEAM  BOBSTACLE!!!

(PS the video is not us! This was 2 yrs ago. I will post some examples of our efforts when I recover enough!)

 

 

From fire to frying pan

 

a lot  of people are confused by fat. image

And when I try and explain my diet, and the role of fat, I probably make them even more confused? Hell, I’m quite confused a lot of the time about the stuff that is put out there by the media and the ‘experts’ because it is very contradictory. And note that I put ‘experts’ in quotation marks. It’s hard enough tying not to be swayed by advertising, but its even more impossible to pick out the real expert advice from the different sources.

Many of you know I follow a low carb, high fat diet. And on other pages i have put some info on this and what is known as a ‘ketogenic diet’ that has shown promise in treating brain tumour. Today I’ve loaded up a page on the issues around fat because it is the main sticking point I find people can’t get over. They will take on board the message that sugar is bad and even that carbs are sugar. But they often just can’t get their brains rount the fact that you have to replace it with another source of enegy which will have to be largely FAT, or that FAT IS ESSENTIAl, whereas carb is not! What?! Yes, if that surprises you read on…

You will find my thoughts in the menu under nutrition entitled : Fat Glorious Fat

Meanwhile,  i enjoyed an organic bacon butty (v low carb bun) for breakfast and bloccoli and cheese soup with exta swirl of coconut cream for lunch. (Both on recipe page) Yum.

Refusing Palliative Care. (don’t palliate, cultivate)

“Palliative” –  (Cambridge  English dictionary) something that makes a ​problem ​seem less ​serious but does not ​solve the ​problem or make it ​disappear.

[inspired by John and Julie with love and hugs and Kati, feel free to correct my gardening metaphors. ]

If your Doctor looks upon the care they are giving you in this way, and worse, tells you this, and  worse still, you believe them… you will get exactly what it says on the tin: you will feel a little more comfortable (maybe) but you won’t get better.

Like cutting the top off brambles and weeds, it looks better but they’ll be back!!

Unless you are tired of life, have made peace with your maker and done all you want or need to do, refuse it, I beg you. But I am NOT telling you to refuse medication, ongoing treatments or medical help. What I AM telling you is to ditch the title “Palliative.”

I am glad nobody has ever brandished the word at me. They could have; I know certain clinicians who have the firm belief  that I am terminal, it’s just a matter of time, they have told me so (as a result I have chosen to no longer permit them see or treat me) but still, no-one has ever to my face referred to  the treatment they give me as palliative.

The word palliative in its medical context is usually reserved for treatment that is not designed to treat the underlying disease. As the definition says, it is designed to help symptoms but not the underlying cause. Palliative care has quite understandably earned the reputation of being synonymous with end of life care. But in truth this is not the at all the case. There are many patients with chronic conditions who receive palliative care who are by no means terminal. Indeed, we have all been given palliative care. If you are drugged up with pain killers post operatively it is something that makes the pain much more bearable but doesn’t contribute to the success of surgery. If we are given steroids to reduce swelling in the brain, they make the headaches abate but will never get rid of the tumour that has caused the swelling. For that you must weather the surgery and radiotherapy which will treat it. Sometimes doctors irradiate bone that has a secondary tumour, not because it will cure the primary but because it is great at treating the pain caused by the secondary. If you take a simple paracetamol for the ‘flu, it is palliative. It will make you feel a little better, easing your aches and bringing down your fever but it will not cure the virus. These  are all technically palliative treatments, and there is nothing wrong or worrisome about them.

The problem arises when you are told that it is all they are offering you. It gives the clear message (intended of not) that everyone has given up on you.

So, I suggest that if someone offers you palliative care first make sure exactly what they mean by this. Do they want to offer to help palliate a troublesome symptom, in which case accept gratefully, or do they want to stop all treatment aimed at combating the disease, and concentrate on ‘putting you out of your misery’, or to use the commonly deployed euphemism:  ‘make you comfortable!’

I would vehemently oppose such an attitude, but let’s suppose this is really and truly all that is left in the doctor’s tool kit. All is still not lost. Let me make one thing straight, as great as they are, doctors aren’t the ones that cure you! They do their level best to help you to get better, but they only have a limited arsenal of weapons, and when they have tried them all some doctors throw in the towel and use the P-word. Others don’t give up so easily but there is always one person who will never stop combating the disease: you. Or more importantly, the ‘inner you’. Whether you feel like it or not, whether you are ‘up to it’ or nor, whether you believe you can get any better or not, your own body’s defences will keep on striving to heal your body.

But here’s the rub: your body will be scavenging for the raw materials it needs to continue its fight. Many of the medical treatments thus far will have been actively depleting these raw materials: running down your immune system, eating up precious minerals and vitamins, degrading proteins, damaging DNA. It’s like a garden that has poor soil that has been completely depleted of nutrients. No wonder you are exhausted. Some of the ‘palliative’ treatments the doctors may offer you may help a little but rarely are they designed to undo the (often necessary) damage caused by clinical therapy. Now is the time to listen to your body and pander to it…and pamper it. Find out what it needs and go all out to provide it. The surgeon may have dug out the brambles, the oncologist may have applied  the Glyphosate, but unless the soil is dug, tilled, fertilised, replanted and loved,  it  will not grow roses.

I am already giving this type of care to myself. You don’t have to wait until some  lilly-livered clinician says ‘sorry, you are ‘palliative’. And what I am doing is not palliative. It is definitive  treatment that allows the true, natural healing of my body. I haven’t refused any of what I consider the real ‘palliative’ treatment, namely the surgery, radio and chemo; they are the things that have enabled me to get through to the place  we can at least see the garden beneath, bought me time while my own body has dealt with the cause of the cancer. For believe me, the lumps the cancer produces are mere symptoms. You can cut them out, irradiate them, poison them with chemo, whatever you like, but the cause remains… unless you take stock of your body’s defences and begin to replenish them.

For, no matter how advanced, no matter what the  success rate, no matter how cutting edge that treatment is, the clinicians will be first to admit: cure is no certainty. The cutting edge successful treatments hold the cancer at bay, getting rid of the lumps, bumps, nodes, obstructions, swelling etc; but, without true healing of whatever caused it in the first place, it remains just another chronic condition. Palliated. Many of us are content with this, and I’m not knocking that. You can live a full and active life as a cancer ‘victim’. But why do that if you can claim the complete healing that is possible. (See here and  here and here)

The cause of some cancer is at least partly understood. Genetic links, environmental factors, smoking, asbestos exposure, viruses, but even these don’t get to the true root cause: you body has lost the upper edge in the fight against the disease. It may have done so because it has the genes or environment stacked against it, but look at it like this, it managed for the last 30/40/50+ years and given the right support and care it will do again. Doctors may not believe it, you may not believe it, but your body’s  ‘inner self’ will never give up on that hope. The trouble is, it can only succeed if your ‘outer self’ buys into the deal and provides the correct raw materials.

As I continue to remain symptom and tumour free, The Doctors will all believe that their treatment was  what caused my ‘remission’  in the end (at least they will once I exceed the statistics in terms of survival, which in my case won’t be too long) but I will know that it has been entirely due to the grace of God. I’m not going all wishywoo on you; it’s not that some famous healer laid hands on me, not that some magical prayer zapped the tumour, it’s not that some divine anointing befell me. It was simply down to things beyond my control that worked to my good (AKA God’s grace). Those things were run of the mill and very down to earth:  excellent medical care, big lifestyle changes, nutrition (and excellent advice on this… thanks jenny) ,  support of people around me, and an unsquashable (God given) optimism and joy in the journey.

One of my favourite quotes is: “Cancer is a wake up call; when you get it, it doesn’t mean you have to die, you only have to heed the call.” The call may be different for different people, but it is heeding it that enables you to make the changes that enable your poor ailing body to make itself whole again… the way it was always meant to be.

Don’t for one minute think that I dismiss the skill, knowledge, research and medical advances that permitted me get this far. But oncologists will freely admit that the treatments they give are toxic and hard to bear. There are no magic bullets and no guarantees,  other things being equal,  as to who responds and who doesn’t. But the best doctors admit that they suspect there is always something ‘extra’ that makes the difference. For me that extra was nutrition, supplements, support, encouragement and faith, but lots of people I know do all of that. Are those important? Absolutely! But there is STILL more to it than all that. What I believe makes or breaks it, is my absolute faith in the knowledge that I am not in charge. Whatever I have, or don’t have, whatever I suffer or experience, whatever I find or lose, disease or health,  blessings or curses, is not mine to strive for or battle against, it is all down to Grace. And I know that grace provides much more, and more completely ,  than anything I  ever could. You see, you don’t have to strive for grace, it isn’t luck of the draw, it isn’t chance. It is there for everyone,  free and abundant in all situations if only you notice it. But you have to choose to accept it.

You can do it. Your own body (by grace) knows more about kicking cancer cells out than any doctor, it just needs the resources to do it, and those resources, whatever they turn out to be, are available to all by Grace. No prescription  needed, just choose to believe it.

So, returning to my garden theme, don’t give up and wait to be ‘made comfortable.’ Who wants a (not very) comfortable ride home in the back of the van,  when you can be staying  behind,  clutching a medal for “best in show” waiting to be interviewed by Alan Titchmarch?*

Look around you, a full and healthy life is like a well-tended garden, as long as you weed, plant and fertilise it’s always there for you to enjoy…if you choose to.

SO:

Dont palliate! Cultivate!

 

*Kati, I realise the Chelsea metaphor doesn’t quite work as those gardens are totally planted with things grown elsewhere and torn down as soon as the crowds go home. But maybe there’s a lessons in that too…  A garden is for life not just for show. You can enjoy strolling around someone else’s and get some great inspiration, but then you need to go home and set to work and learn to grow your own.

( *Kati is a good friend who, along with friend and co-worker Maggie Hughes, has produced wonderful award winning desgins at Chelsea http://www.katicromegardendesign.co.uk/aboutme.htm.

The image above is of their “get well soon” garden, and the one at the top is their ‘post card from wales’ garden. You have no idea how much work went into that overgrown garden! It usually takes years of abuse and neglect!)

Madness sets in. Put March 13th in your diary.

imageI have decided I can run a 5k obstacle race in aid of Brain Tumour research. Having never run that far ever, never mind with obstacles, you may say I am a little overambitious (AKA mad) , and you would be right.

However, I didn’t get where I am today by being pessimistic.  If I can survive 5 hours of awake surgery, six weeks of radiotherapy (with chemo on the side) and 6 more months of regular ‘adjuvant’ chemotherapy, I can survive a few hours of mud, water, crawling, running, wading and staggering  round an obstacle course. (Running is optional) 

And so can you! Join me in the ‘Chiltern Warrior’ challenge at the Chiltern open air museum, a fantastic location with acres of farm and woodland dotted with relocated historic buildings. It used to be a favourite haunt of ours when children were younger. And the cause I propose to support is really in need of  funds. Did you know that Brain cancer if the leading cause of death from Cancer in under 40s and is also the leading cause of cancer death in children, YET it gets only 0.7% of the research budget! Scandalous!!!

Please log on to the brain tumour charity website to find out more, and share it with friends, and consider donating or fundraising. (There’s also a petition on there to sign.)

.http://www.braintumourresearch.org

And look at the Chiltern Warrior website (http://www.coam.org.uk/whats-on/events/chiltern-warrior-obstacle-run/)  and think about joining me in what looks like a hilarious, fun-filled day.

imageAnyone who wants to join me can e-mail or message me or reply in comments and I will put together a group application.

“To remission and beyond”

image

Yes, I know remission isn’t a destination. Infact, it was never what I was aiming for. Healing was always the desired objective. But rather than wittering on about the semantics let me give the good news

MY SCAN IS CLEAR.

???????????????????????????

imageThere is no sign of Bob. To quote the report: ” no sign of progressing residual/recurrent tumour.”

Of course, they do not use the the word ‘remission’ never mind the word ‘healed’ in cases of glioblastoma because it would be considered a concept as laughable as Buzz Lightyear’s “beyond infinity”. But I will very very happy to  ‘Fall with style’ in order to reach my destination which, in any case, never was remission, it was that impossible land beyond. And a clear scan is a brilliant sign that we are on the right path, or should I say flying?

(For those who have completely missed all the ‘Toy Story’ analogies in this post you need to watch this clip in which Woody and Buzz have been left behind by the removal van, and a deflated ‘Buzz Lightyear’ who has been told not to be so ridiculous, he is only a toy, not an astronaught, realises that he can still save the day, just as he is.)

 

 

“It is finished!”

The first Chemo free day of day one of the rest of my chemo free life… hopefully!

imageWaking in grateful and hopeful mood I watched the dark clouds scudding across the sky; great, grey threatening monsters promising rain, driven by a moaning wind. Huh, I thought, it seems I should have more optimistic weather than that! After all I have been healed of a horrible dark cloud that invaded my brain, that the experts all say will be back to re-inhabit that nice clean vacant triangle of brain that Nigel left behind. Honestly, I thought, if Bob has really been not just swept away on the wind to creep back in at a later date, but destroyed never to be seen again, then surely, if God can do that, surely, surely he could have mustered up a bit of celebratory blue sky.

God and I are a bit like this. I we have little conversations in my head. I am never as grateful as I should be, and am always having a little  moan. He is of course always totally reasonable, (annoyingly so at times).

“It’s winter,” he replied, “the state of the sky has nothing to do with whether you are celebrating successful treatment for a brain tumour or not.”

” Yes but you know very well the weather affects our mood. Just a little bit of blue sky would make all the difference.”

God sighed. “True, you do have an irrational connection to the weather.”

“Go on, give me a nice day.”

“So you want me to alter the weather for you.”

“well…”

“You want me to dissolve these clouds that are laden with rain, that I am currently transporting out of harms way, via your village, not even letting them even rain on you, just because you want your  mood to be improved a little?”

“Ok, ok, I guess what you are saying is it could be worse.”

“It could indeed.”

“But, well, it just seems that, since you healed my brain tumour, a cloud, well, just, couldn’t you just, I don’t know, make a little space in it?”

“As a sign you mean?”

“Yes, well no, no, not as a test! God forbid!”

“I do.”

“Yes, but I know you could so…”

“I should hope so! But why should I? ”

“Well, no reason I suppose, I know there’s no reason you should do something as pointless as organise the weather around me, when you have so many other things to do and, lets face it, we’ve  not even  had the scan that says Bob is still banished.”

God is silent now.

“Infact, maybe this stormy weather is a sign that there are still storms ahead.” This negative thought was not meant to be aimed at God, but the trouble is you can’t talk behind his back.

But instead of  arguing, God just repeated his previous question: “Why should I?”

I thought for a while. Why should God make the weather improve for anyone. We are always praying to God for nice weather.  God did tamper with weather quite frequently in the bible, I thought of  Noah and the rains, and how they ridiculed him for building an ark under a cloudless sky, and other instances but not ever as far as I know because someone asked him for a celebratory nice day!  Oh, well, that’s  that  then.

But God repeated gently: “Why should I'”

“No reason, ” I replied sheepishly… Pause for thought….”Just as there is no reason you would heal me.”

Silence

“But you did. Why?” I ventured.

“Why in deed.”

I glanced up through the skylight into the miserable sky which had darkened even more, and shuddered. Then, gradually, as I  watched, there appeared, peeping through layer upon layer of the thick black rain-cloud, was a narrow corridor of beautiful, bright blue sky. It lasted a few  minutes, just long enough for that part of the sky to scuttle out of the frame of my window,  but it was enough.

I kid you not!

Such love!

 

 

Scan results in glorious black and white.

I finally got a full copy of my scan results. Once I had worked out how to open them and download the appropriate software to be able to view them and then to work out what was what (no mean feat for someone with half a brain!) I was faced with literally hundreds of individual pictures of ‘slices’ of my brain. I have selected the prettiest of the before, after and 6 months on scans. I’m no expert of reading scans but I think they more or less speak for themselves.

In these images, the brain is ‘sliced’ horizontally; the front of my head is at the top of the picture, the left side of my brain (with the tumour) is on the right of the picture, as if you are looking at the slice from the underneath.

16.03.15 scan pre op with contrast (gadolinium)
16.03.15 scan pre op with contrast (gadolinium)

As you can see, on the scan on 16th march, immediately before my op, Bob looked like a white/grey lumpy blob;  ugly isn’t he? The gadolinium lights him up better (worse?) on this scan than on the plain T1 (T1 and T2 are technical terms which refers to how the huge magnets in the scanner affect the tissues and determines  how dark or light bits of the brain appear, enabling different features to be picked out.) On a ‘T1’ scan blood and fluid appear dark. Grey matter (the ‘thinking’ bit of the brain all around the surface) appears dark grey and white matter (the communicating highways) appears lighter grey. A tumour may appear darker than the rest of the brain matter, but when contrast is injected the tumour tissue appears brighter. By comparing the different scan images (T1 T2 and ‘flair’) the tumour can be picked out from the rest of the gubbins.

 

16.03.15 scan post op with contrast
19.03.15 scan post op with contrast

The second image on 19th March is the one taken the day after my op . With the contrast you can still see a white blob but I think this is now fluid and/or general gubbins that has filled the hole where Bob was. The black dot is probably air.

 

19.009.15 scan at 6 months with contrast
19.09.15 scan at 6 months with contrast

The third image on the 19th September is my 6 month follow up. Again it is with contrast and as you can see the hole is now just a small black triangle with a bit of debris and no material enhanced by the contrast. Bob is banished!

The goose is getting fat. (Ketogenic friendly)

imagePenultimate chemo is over. One more just before Christmas and I’m done. Hooray!

Then I get scanned in the New Year and, well, all being well, it’s the start of a  new year, with a tiny  bit of brain missing but everything else in top form!

It has been nearly eleven months since this saga began and in some ways it has flown by, in others it’s been a long slog.  And if, like me, you have made big changes to you life and  your diet, it really takes this long to adjust to the new life. At first, with daily trips to hospital it’s easy to remember why you are turning down the jam donuts and opting for green tea instead of white wine! (Not, I must add, that anyone there gives advice or encouragement to look to anything other than drugs or surgery to deal with the tumour) Then, after a while, when the hospital ‘alarm bell’ becomes only monthly, it is still a regular reminder that Life still cannot be regarded as  ‘normal’.

But  I wonder what it will be like on Christmas Day, when the Christmas pud beckons and the air is thick with the smell of Aunty Mabel’s sherry, and there are no more pending chemo weeks reminding you that you are ‘A Cancer Case’.

In case any of you don’t know, I am on a very low carbohydrate diet, the theory being that cancer cells, require large quantities of sugar to survive.  In contrast, normal cells can switch to a different pathway to produce energy. (link to  website with basic info) Carbs, (for the uninitiated) are just a sting of sugar molecules, and are just broken down in the body to feed those greedy cancer cells. So no starchy foods and absolutely no sugar.

What am I going to pig out on at Christmas? Cream! And nuts! And stuffings (carb free), and sprouts (full of anti-cancer nutrients) and cheeses and oh my goodness, there’s actually a whole load of indulgent recipes to experiment with. Ok, the roasties will be missed but everything else is adaptable and, with half of my family also having gone veggie this year,  Christmas lunch promises to be a much varied feast as a result.

I am looking for low carb/ketogenic Christmas recipes and may post promising ones as I find them. If anyone has any favourite ones please post them as comments, or send them to me.*

Meanwhile, my ‘radio-buddies’ and I are off for our pre-Christmas get together this week end. Everyone is more or less reaching the anniversary of the ‘day their lives changed’. All are doing well, some finishing treatments, others just slogging on, and all still under scrutiny by the meddlesome medics. But I am proud to know them all, and their partners and families. A nicer bunch of people you couldn’t hope to meet.

See all you in the pub guys!

*see newly loaded recipe page.

 

 

Stuck in the wrong lane?

image Have you ever got in the wrong lane? Panic! Should I cut across the hatched area, risking life and limb, annoying other motorists? Or worse?

Sometimes I admit I have, but its not a good idea. No. Sane thinking tells you to carry on calmly, in the knowlege that this will never get you to where you want to go, and then  look out for the next exit that WILL.

It is never too late to change direction.

Whether it’s a dodgy diet, bad habits, pessimism, stress, or just a sat-nav error that put you in the wrong lane, just calmly put it right. And NEVER beleive those who tell you, you have chosen your ‘lane’ just sick in it. (“You made your bed, lie on it” “it’s too late now” “accept your fate.” ????? Sound familiar? Bah!)

Despite the stern warning at the top, the signs are there for a reason: SO THAT YOU CAN GET INTO THE LANE THAT WILL LEAD YOU WHERE YOU WANT TO GO! And if you go wrong, they are there so that you realise it and have a chance to put it right.

If you miss the turn to HOPE, dont kill youself and others trying to do a U turn, just take the very next exit and put it right. All you will have lost is a little time.

It’s easy, all you have to do is notice the exits. There are many exits off the highway to Despair: little comforts, momentary flashes of inspiration, encouragements, love, friendship, laughter. All you have to do to take that life saving detour it notice them. (See new page: noticing the comfort among the chaos)

And for those who are on the right road there are many little pesky little lane changes like the one above that sneak up and lead you astray if you don’t keep your “eyes above the waves“. (Click the link to explain the mixed metaphor)

Good luck!

I’ll see you all at the next rest stop along MY road, and we’ll share a nice cup of green tea and a  low carb,  chocalate brownie together (yes, there is such a thing!)   while we laugh at the tale of how you managed to get into the wrong lane in the first place. And how you managed to get back on track. ( And how much better the food is on the road to Hope.)

I ❤️ my bald patches.

❤️
❤️

 

 

The bald patches from my radiotherapy are regrowing. Unfortunately they are a different colour!

 

 

Not so keen on th 'skunk' look though!
Not so keen on th ‘skunk’ look though!

(NB I dont usually go out looking like this incase i set a new trend that you slaves to fashion will all have to copy. Instead i have a fetching array of scarves and hats… And even a ‘cheating’  scrunchie with hair on it!  Oh, and I have a bright pink wig (for fun not fashion) that my brother insisted on wearing to a pub lunch. (Cant go there again!)

 

 

Scan Milestone (the story of the well stocked fridge)

imageI guess those who have really been living with this dratted condition for a long time (oh yes, there are people who are veterans) will take scan results in their stride; like a Tesco delivery, you have to remember to be in for it, you have to check there are no stupid substitutions, but then you get on and pack it all away. Your fridge is then all nice and replenished and you feel relieved, if not a bit self-satisfied, but inevitably it will need doing all over again all to soon.

But i’m not quite there yet. The first scan after finishing the radiotherapy (3 months on)  is a bit of a milestone. We are told it could be clear, demonstrating no more than a bit of a mushy pond where the sugeon has trodden, which would be good, OR it could show something called ‘pseudo-progression‘. A vague 50/50 chance was bandied at me but research studies I have seen vary widely. I have seen figures between about 13-60%, and it all overlaps with radio-necrosis which is also distinct from tumour recurrence.  Anyway, not being a statistic, that’s all irrelevant, good and clear is what we look forward to.

Then, just when you thing you have your mojo in perfect pitch, your best-brain-buddy (the lovely Tony who has been mirroring the same path as me since the very beginning) gets his scan and it looks ‘not good’.  Shock horror. He is back to see Nigel who, no matter how much we love him, we really didn’t want to see again at this stage. I can’t comment on Tony’s condition, but I am confident that there is very good reason for opening him up again, and that Nigel will restore his ‘fridge’ to full again, (sometimes it is absolutely necessary to bleach and scour the empty fridge before you refill it). And any way, as far as I can make out, it’s nigh on impossible to say for certain until you actually get in there what is recurrence and what it just pseudo-progression or necrosis. So I am  very optimistic on Tony’s behalf, and after my initial selfish “Aaarg, nobody told us that was on the cards, that will put the mockers on my holiday plans,”  reaction,  I even became a tinsty-winsty bit envious that he is getting an early scour and polish. (Sorry, Tony, I wouldn’t really swap places with you but there always IS an ‘up’ side to everything.)

Anyway, back to my news. My scan came back clear, no obvious signs of recurrence.  Hooray!

And surprisingly it felt like a real boost. I hadn’t been too worried because I knew all about ‘pseudo-progression’ and was perfectly cool with that, so should not have counted this as much of a bonus. After all it’s only the first of an endless set of milestones. It doesn’t qualify as ‘remission’ (i am still on chemo) and  it’s not as if it’s even a normal scan (there are lots of bits of debris and my brain still looks a battlefield) but somehow it seemed a cause to celebrate. In this game anything over half a glass-full is something to show off and drink a toast to. And this, for me, is one  step along my chosen path of long term survival.

So, you you are cordially all invited to take communion from my ample glassful. And Tony, we are all with you all the way and look forward to the restocking of your fridge and wine rack, so if we need to come begging I know you will the one with ample supplies and a glass overflowing.

Cheers!

 

The Anatomy of Hope

imageThis  book, written by an oncologist, is the very book  I would have written given a chance! I just found it a couple of days ago and it says everything that I have been trying to say about hope and how it can be communicated, dashed, lost and found. The hunches, annoyances, suspicions and heartfelt instincts that Hope is of ultimate importance in the healing process, never mind life in general, that I have been ranting on about for weeks, are all there written beautifully in engaging style.

Case study,  evidence, personal experience and research are all there, echoing my own experience and gut feeling. His own evolution from naive junior doctor to experienced, compassionate physician resonate with the ‘doctor’ bit of me whilst the lessons he learned from key patients stand out as beutifully  recounted ‘typical’ stories, such as I have felt and heard as a patient… and wished someone ‘on the opposite side of the desk’ would have understood. Here was a man who did slowly understand and who has been honest enough to bare all.

I wish I’d found it earlier, I could have referenced it instead of ranting, but then I’m glad I didn’t because it has at least served to vindicate my rants which I know to be all my own, and not something I took on from someone else’s passion and eloquence.

The front page quotes this: “Pandora, the first mortal woman, received from Zeus a box that she was forbidden to open. The box contained all human curses. Temptation overcame restraint and Pandora opened the  box. In a moment, all the curses were released into the world, and all the blessings escaped and were lost- except one: hope. Without hope, mortals could not endure.”

All doctors should read this book. It should be compulsory reading, especially by oncologists. 

Anatomy of hope: how people prevail in the face of illness. By Jerome Groopman MD.

Glass half-full attitudes to cancer

This lovely TED talk (link incase video does t work) explains that we are terribly prone to hanging on to negatives, but life doesn’t have to be tainted by that. It struck me that in the experiments described it was, thankfully, much harder to turn an optimistic view into a pessimistic view than the other way around, but more than that, the view had been dictated in the first place by how the information was presented.  Raw statistics can convey entirely opposite messages entirely based on how the words are phrased. 

Blessings and curses!

In the case of a cancer diagnosis this puts enormous responsibility on the doctors who first tell the patient the news. Whether the statistics are presented as glass half full or half empty will have lasting implications for mood, expectation, hope and prognosis. (Patients who expect poorer outcomes will get poorer outcomes, regardless  of prognosis.)

I am so grateful that my FIRST encounter with the oncology service was a three pronged attack with the surgeon (“Nigel”) , oncologist (“Bessie”) and the oncology nurse specialist (“Nora”) who between them did a great job of telling me that I had a brain tumour that had been fully excised as near as humanly possible and that that that was great news, that there was treatment that was going to do an amazing ‘mopping up exercise’ incase any cells were left behind and that this has much improved statistics of late (so not to put too much stock on them), and on top of which I was so fit and active and otherwise healthy that I would find this and any potential side effects a breeze, and that erveryone was looking forward to working with me to get the job done!

Bear in mind, this was not just persuading me this was an ample half-glass-full, this was doing a really good job of pointing out that a glass that had a dribble in the bottom was not empty and would be plenty for our needs!

So, thank you so much, Nigel, Bessie and Nora, you have stood me in good stead through much more negative messages. Like the participants in the TED talk study, i have experienced people pointing out the negatives and shaking my perspective , but the study didn’t go on to see whether those people could recover of thier own accord. I can witness that, after a temporary wobble,  I am not knocked down . Maybe I am more stubborn, or maybe I have managed to conquer that trick of re- focusing on the positive, good things of life as described in the talk.  Some days it takes more effort than others but, no offence, I suggest that, especially at those moments, you need someone around you who is a glass half full sort of person, and better still only spend time with those sort of people if at all possible.  I am blessed with loads of lovely friends and family who are glass half full people. I can’t thank you  all enough. Xx

 

 

 

 

 

Another round of chemo over

imageNot much to report. Feel fine. Have vented enough at friends and ranted sufficiently on blog pages  (see new page “oncologists please read this“) to recover from ‘oncologistitis’ * and now can sit back and await next onslaught of toxic chemicals in three weeks time.  To celebrate went up the London Eye, being up high always gives  a different perspective, who can’t appreciate how amazing the world is from up there?

* ‘oncologistitis’:  an acute malady brought on  by a visit to an ocologist who does not integrate faith and hope with their standard therapy. It is usually characterised by onset of anxiety prior  to the visits, a loss of ability to think straight during the visits and a variable mixture of depression and anger after the visit. Treatment: have a rant at friends,  write a blog and,  most important of all, remember God is in charge of outcomes, not the oncologist. 

Temozolomide… friend or foe?

Am staring at the first of a whopping 300 mg dose. They keep on increasing it. (Started at 110mg) .

Friend or foe? image

 

 

 

Quotes from “Medline” patient  information about Temozolomide:

FRIEND:

Temozolomide is in a class of medications called alkylating agents. It works by slowing or stopping the growth of cancer cells in your body…. [although my oncologist just wanted me to sign a form to consent to the recurrence and, worse still, SHE flatly refused to sign an amended  consent form saying the purpose was to ‘attempt to prevent a recurrence‘ …so she clearly does not agree with ‘medline’ …or indeed attempting anything, let alone hoping. It’s like taking an exam with the hope of failing. ]

FOE:

If any of the capsules are broken or leaking, do not touch them with your bare hands and be careful not to breathe in the powder from the capsules. You should wear rubber or latex gloves when you handle broken or opened capsules so that your skin does not come into contact with the powder. [eek! yet you put them in your stomach! ]

FOE:

side effects: nausea, vomiting, diarrhea, constipation, loss of appetite, sores in the mouth and throat, headache, pale skin, lack of energy, loss of balance or coordination, fainting, dizziness, hair loss, insomnia, memory problems, changes in vision, unusual bleeding or bruising, red or black, tarry stools, pink, red, or dark brown urine, coughing up or vomiting blood or material that looks like coffee grounds, fever, sore throat, ongoing cough and congestion, or other signs of infection, unusual tiredness or weakness, rash, unable to move one side of the body, shortness of breath, seizures, yellowing of the skin or eyes, pain in the upper right part of the stomach, decreased urination and… to cap it all…Temozolomide may increase the risk that you will develop other cancers. 

Fortunately, I am a very stubborn person. I will decide what I sign up for. MY consent is already published here.

Oh well, down the hatch.

Laughter with friends

Just had a great reunion of the waiting room rebels. everyone is on form despite being fed poisons, jabbed with hormones and deprived of sweeties, [apart from Ian who still has is a two-tube a day fruit-gum habit. (We are praying for him) come on Ian if Tony can give up M&Ms surely you can wean yourself to one tube? ]

JOKE: (with thanks to ….. Well you know who you are and we are glad you can still see the funny side despite all!)

Question: “What’s the difference between an Onconogist and God.”

Answer: “God doesn’t think he is an oncologist.” 

Disclaimer –  the fact that 99% of oncologists  found this very funnyimage does not mean that you can’t be in the one percent who doesn’t.

 

 

 

 

Hope disclamer! Are you kidding?

imageI am on the soap box again I fear.

I am always on the look out for more survivor stories to add to the blog’s collection of inspiring testimonies and I came upon one that sounded just fine. A chap called John who has survived 15 yrs since diagnosis of his glioblastoma, treated in the US, and  got through it with oodles of energy and enthusiasm for life, a real “so here we are, lets just get straight in and beat it,” attitude. I had loaded up the link when I noticed at the bottom in clear large print a box labelled “Hope Story Disclaimer.”  Can you believe that!? It, in essence,  said this is just a patient story… Don’t get your hopes up!

I wrote to the website explaining (amongst other things) that hope, by definition, is ‘To wish for something that you consider possible’. The fact that there ARE survivors is what makes hope possible. Therefore why disclaim that?

I got a prompt reply, politely explaining that “Unfortunately, the laws in the US require that healthcare organizations post disclaimers with any patient ‘testimonial’ information to ensure that the organization does not overpromise outcomes related to its service”  

After my rant they did agree to look at the wording, which would need to be passed by their legal team.  I asked that their legal team consider the following:

“A patient testimony, if properly verified, cannot be defined as an ‘over-promise ‘. It is fact, and therefore a justified cause to offer hope, no matter how slim….To ‘disclaim’ true patients’ stories like this is disrespectful to them and possibly damaging to their future outlook, never mind the damage it does to those of us  who are looking for those sparks of hope in a dark place.”

I will let you know if the legal team accepts my suggestion that they change the “disclaimer” to a note of encouragement saying: “Prognosis and success of treatment depends on many factors aside from medical therapies. Every patient is unique and special. These stories show that no matter what the statistics show, it is possible to survive and thrive. You are not a statistic.”

But who will tell the US legal system that?

Grrr again!

 

Adjuvant chemotherapy (and the curse of the consent form!)

imageI have just signed a consent form for my next phase of treatments which was entitled “adjuvant chemotherapy” and I am very cross with myself. Here’s why:

definition of Adjuvant:
1. serving to help or assist; auxiliary.
2. utilizing drugs, radiation therapy, or other means of supplementary treatment following cancer surgery.
3. a person or thing that aids or assists.
4. anything that aids in removing or preventing a disease, esp. a substance added to a prescription to aid the effect of the main ingredient.
5. a substance admixed with an immunogen in order to elicit a more marked immune response.

So… According to my reckoning this (nasty chemical) though not curative in its own right,  aids or assists other treatment ie the surgery, radiotherapy and my own immune responses, to remove or prevent a disease.

Fair enough. Then, to my mind, the only purpose for taking it is to help those various treatments to eradicate the disease…… Completely.

YET, here’s what I was asked to sign up to…

“Purpose of Treatment: to delay recurrence of the cancer.”

NO NO! I actually signed something that says ” this nasty treatment, with all its side effects that you are signing up to here, is not going to solve anything in the long run anyhow. It will NOT cure you, It WILL come back.”

I know that’s what the doctors believe, but I am so cross that they made me sign something endorsing their view. If that’s not a ‘curse’ in writing I dont know what is.

So I hereby declare in writing that a document signed under duress is nul and void. I will sign up to the treatment under the official dictionary definition: anything that aids in removing or preventing a disease, especially a substance added to a prescription to aid the effect of the main ingredient.

…and at this stage, having already undergone the surgery and radiotherapy, the main ingredient in my arsenal for treating this disease is my own body’s amazing, God given  power of healing itself, along with love, hope and unfettered enthusiasm for life. Let any Doctor argue with that and I’ll have them up for malpractice,  consent form or no consent form!

Grrrr!

(for further ‘thoughts’ on other things doctors curse us with, see here.)

Thoughts from “The-Same-Boat” (How NOT to give bad news)

You've got six months to live but with aggressive treatment we can make it seem a lot longer.
You’ve got six months to live but with aggressive treatment we can make it seem a lot longer.

(Don’t worry… I haven’t had any! It’s all good, I’ve just been punting on the Cam and it got me thinking.)

With my radiotherapy behind me,  I have been relaxing, having fun with friends, going boating, indulging my new shopping craze (hats and scarves) and feeling really well. But, with my first follow up appointment with ‘Olive* The Oncologist’ looming, I have also been thinking about some of the stories and accounts that have come to my ear. It seems that there is a natural human instinct for people to share personal worry and anxiety with anyone who may be ‘in-the-same-boat‘ and an instinct almost as strong to hide or disguise such information from others who ask. It is the “I am in a real mess but don’t tell anyone else,” instinct. Don’t think you can spot this instinct if you aren’t the one “in-the-same-boat” because it  can be accompanied by any mood from deep depression to crazy euphoria.

IMG_1455Being in the cancer-boat, I am privileged to such insights, but having also one foot in the Doctor-boat, I am afraid that I have become more and more concerned that Doctors don’t know the half of it, and worse than that, they are responsible for a good portion of the anxiety and depression.

AAArgggg…. don’t shoot me down! I KNOW bad news is bad and that it is naturally going to worry people. That’s not the Doctor’s fault. But the effect of that news  on the individual is highly variable. And that IS something over which the deliverer of that bad news has profound effect.

Individuals have a greater or lesser degree of resilience to grim news. The text books will tell you about stages and processes of ‘coming to terms’ with life changing  events such as death of a loved one or terminal illness, and I am sure they are all in there somewhere but these accounts don’t tell you/us how to manage the news in order to maximise the positive and minimise the negative (let alone what effect it will have on your recovery). In the case of cancer or other serious life-shortening disease, I am not at all persuaded that it is so ‘natural and healthy’ to go through deep depression or paralysing anxiety, or heart wrenching grief for an outcome that hasn’t yet happened. I read recently in an article that brain tumour patients are ALL by definition depressed. Well. I am not! But reading that could have made me so. And that’s exactly what doctors often do. They apply things they have read or seen to all patients in front of them, thereby reducing them to the lowest common denominator, in terms of mood, treatment response and prognosis. YOU HAVE TO STOP DOING THAT!

We are not statistics. We are not even average. We are exceptional, every one of us. And you should feel privileged to sit before us in your clinic because we are about to alter your success rate with this disease. Cheer up!

My theory is that the only sensible way to manage the future (whether it be a day or a lifetime) is with hope and optimism. There is plenty of evidence that people who take a positive stance on life live happier, longer lives. That applies whether you have a serious disease or not. And whilst some of us have a naturally sunnier disposition  than others, this CAN be influenced. In the book, Radial Remission, there is a lovely testimony from a lady who realised this and, after her own brush with grade IV cancer, set up an organisation (Comedy Cures) with the sole aim of bringing laughter to ‘terminally ill’ patients. [link to article]

[ref: health benefits of laughter.]     [article ‘the laughter prescription’] [link: Radical remission project on line] [Ref: positive emotions and survival]

So Doctors and clinicians, who routinely depress patients in their clinics by the way they speak, need  to learn the art of delivering hope and encouragement in the face of every circumstance.   Blessings not curses.

In my page ‘What is Wrong with You Doctors?‘ (purposely put under the treatment menu) I have written some thoughts on how not to say things, based (very unscientifically) on stories from the waiting room, coffee shop heart-to-hearts,  conversations with friends, neighbours and even the odd stranger: a wide selection of  ‘same-boat’ moments.

Hope, faith and love can transform  people’s lives, it can be a wonderfully positive life-enhancing experience in the face of “Bad News”. I think it is the antidote to everything “Bad”. It’s a pity we can’t bottle it and dispense it in pharmacies.  It’s hard to conjure from thin air, but it does seem to seep across from person to person. And thank goodness it doesn’t seem to work in reverse. Light always overcomes darkness.

My ‘radio-boat-buddies’ and I have certainly been an inspiration to each other and our communal mood lifted during our time together. It is, I think, something to do with sharing and caring for each other, especially in those ‘same-boat’ moments.

I just think Doctors need to get into the boat and drift a little way downstream with us sometimes.

click here to read the full page rant.

 

* I have decided to call my oncologist ‘Olive’ to protect her identity. She is working with ‘Nigel’ to eradicate Bob, but since Nigel has cut away as much as he wants, and gone home rejoicing,  frankly, I think she has very little left to play with, and I suspect this is a great disappointment to her. Also, my buddies and I, with our healthy lifestyles,  un-squashable  hope, raucous  laughter in the waiting room, and indomitable spirits, are unable even to give her much in the way of  juicy side effects to treat. Sorry Olive.

Bye Bye varian 2 (End of radiotherapy)

It was my last (I trust ever) radiotherapy yesterday! Hooray! The six weeks has gone really quickly and my fellow sufferers have been a real hoot, and a great morale boost.  We are all bbfe (that stands for best friends for ever). Despite the staff’s attempts to sabotage our plot by rescheduling all our appointments* this week  in a cunning ruse to keep the naughty ones apart, we managed to have a lovely breakfast ‘party’ over in Maggies which went on all morning. We drifted off at appontment time to get zapped and came back for tea, cakes (low carb of course!) and laughter.

(* the staff said they were servicing one of the machines!)

I cannot say I would have chosen to go through all this, but I can honesty say I wouldn’t have missed it for the world.   We were actually sad to leave for the last time and more tears were shed on saying goodbyes than at any other time, including diagnosis. But we know we will see each other again and keep in touch, thanks to the wonders of the internet and phone and google maps, even though we have all travelled from far and wide to converge on good old ‘Varian 2’

In case you are curious about the machine that has faithfully administered ‘death rays’ to any stray deserters from Bob’s army, who may still have been hiding in my brain, this is what she looks like:

Varian 2-1

She is a linear accelerator. There are six of them in the hospital and she is number 2, known to those us in the know as ‘Varian 2″ (I think ‘Varian’ is the make, like Sony, or Adidas, not that they make linear accelerators, I don’t know anyone else who does, but I am sure they are not as good as ‘Varian’). However, if the staff are to be believed, after putting up with us lot for the last 6 weeks the was plum tuckered out, and needed a week off. We wish her a pleasant week.

FullSizeRender

And here is my mask, in which I spent 15 minutes every week -day screwed to the table (minus hat, that’s just how i wear it when out and about!)  whist they lined up laser beans## and set a computer program to rotate V2’s accelerator ‘tubes’ in an arc around my head. You feel nothing, and soothing music is played that doesn’t quite mask the beeps and whirs and, on occasions, worryingly, creaks ! (Varian 4 is worse, we think he’s an old man and is probably steam driven)

( ## ha ha! This was one of my clasic spelling spoonerisms, but i really like the idea of laser beans all being lined up so i am keeping it 😊)

Anyway, today I took my last chemo dose (at least for another month when I have to return to it for one week out of every month) and spent my first day without having to make the hour long journey to the hospital… and back.

Still feeling great, still amazed at what is happening around me, so many loving friends and family, so much caring, so many new things to see , do and learn about, so much of life to live.

The blog will continue, even though it is really no longer Bob’s. He’s well gone, been chopped out, executed, poisoned, starved, evicted and excommunicated.  He has popped his cloggs. He’s passed on! He is no more! He has ceased to be! ‘He has expired and gone to meet his maker! His metabolic processes are now history!  He’s kicked the bucket, he’s shuffled off his mortal coil, run down the curtain and joined the bleedin’ choir invisible!! HE  IS AN EX-TUMOUR!”  (with apologies to Monty Python)

The plan is now to make my brain a heathy, heavily policed zone, and my immune system an extravagantly  resourced, and full armed army that will take no prisoners. Bob has gone but if any rogue stem cells so much as read a magazine article about life as a glioma they will be arrested and taken off to boot camp, where they will have to undergo programs that teach them how to integrate into the brain community and be a credit to their society. The, they will be put on parole and If they put so much a a fingernail out of place, they will be exterminated.

I will continue to dribble on in this vein in my  blog entries, so that anyone interested can follow my subsequent adventures and how it all pans out and, indeed, add their own comments it they feel so inclined. I will also try and update and add to the various pages in the drop down menus with info about nutrition, supplements, lifestyle, thoughts, quotes and links to advice form others more expert than I. If, by the way, you are one of those who is more expert than I, do feel free to add to the debate.  The only comments I may censor are negative and depressing ones:  this is negativity  free zone!

 

Love and Blessings.

x

 

The Quitting Principle

Only six more sessions left to go and I’m feeling great. I have had had such a lovely week, being with friends turns every day into a great day out, and new friends in the waiting room feel almost like family! I tell you, we have got to know more about about each other’s thoughts, hopes, fears and  emotions in these short snatches of shared experience than some people get to know about each other in a lifetime.

Goat-Eating-a-Guy-Bald-Head-Tattoo-ArtBut I do think I need to own up to being a total fraud! when people asks how I ‘do it’, meaning how do I keep so positive and look so perky. (Bald patches aside!) I don’t really know know what to say. I usually mutter something about eating well, looking on the bright side, keeping a sense of humour and, if I’m feeling brave, faith in God. And whilst all these play their part they don’t really explain it.

I worry that I might even make other people feel worse, or annoy them  because they are having an off day; maybe they are worrying that they are not eating well enough, not being cheerful enough or allowing some magical ‘formula’ to pass them by. The truth is, I’m as mystified as the next person; if someone had told me I would feel the way I do in the situation I am in before I got here I would have said ‘No way!” I would have said I’d be in a right old panic.

But, I do feel as I do. It’s neither a state of euphoria conjured up from some deep inner strength of character nor a induced state of indifference to pain or fear due to  some kind of supernatural ‘anointing’. No, what I do know is that it is not my fault I am here and I know I can do nothing of myself to get myself out of it; I think that this is part of the key.  When I am most out of control, when I am at my most pathetic, when there is not a thing I can do to help myself, when finally I give up, a power inside of me yet not of me arises, a power made perfect in my weakness. It is easy. I am like this not because I am strong and courageous  because I quit the quickest!

But if that makes anyone think I am some sort of person of great faith, think again. There is a power beyond your wildest dreams is within everyone… don’t look at me, or the person next to you, that means YOU. Whether you have faith or not, it IS there. The quitting principle applies to everyone; it just that it takes an awful lot to get most of us to give up the belief that we are*, should  be **  or indeed must be***  in control!

[for each of these read: *smug **anxious ***angry/afraid and we all go through every stage!]

The ‘peace that surpasses all understanding’ is not a matter of controlling our problems.

imageNor is it a matter of cessation of trying  (we have to turn up for treatment, eat sensibly, get our rest, whilst still shopping, working, picking up the kids, bla bla bla…) what it IS about is relinquishing  personal responsibility (and hence worry) for the outcome. WE only have to dance through the storm, we don’t have to control it.  That would be ridiculous!

So quit.

Not from walking through those hard to bear paths, but from  giving up your perceived right to control it all.

Then watch.

It starts with little occasional comforts and small amusing asides, and grows bigger and more delightful the more you notice it;  notice each little delight as it arises, no matter how small or large.  Acknowledge it as something outside of you, outside your disease, outside of your power, outside your control. See them for what they are: God’s conversation with you. Listen. He’s really interesting, and doesn’t in the least mind talking to people who don’t believe in him. (Admit it, it makes more sense than taking to yourself!)

If you don’t believe me, you’ll have two choices: humour me and give it a try, or label me insane.

I don’t care, it’s all the same to me. I suggest you join me anyhow. It’s more fun than worry (whether it be about the gas bill or neurosurgery) and if we all  get too mad, we will be in good company (see above) and anyway there are some very good treatments for it nowadays that no longer involve having your frontal lobes removed… oh, I forgot I already did that.

PS No, I did not get a goat tattooed on my bald patch. it’s just a thought!

 

The radiotherapy waiting room. (eavesdropping)

Yesterday was quite a jolly time in the radiotherapy waiting room. Sometimes we are in -and – out and barely get time to nod and say hello, but yesterday they were running 20 minutes late so a bit of bonding went on. Here are a list of some of the conversions:

  • proposal that we instate a perpetual Monopoly game, that we could step in and out of. As you arrive you take over from someone who is going int to be zapped. Of course, we agreed that we need to enter the waiting room at an opportune moment to make sure we take over from someone who has lots of hotels.
  • how  those who need to enter with full bladders best mange 20 minute waits (!)
  • how our sub waiting area ( 1& 2) is much better than area for numbers 3-6.  There is a nicer class of people (we wouldn’t want the lot form 3-6 wanting to muscle in on out monopoly game!) and also how the machine in number 4 (which several of us occasionally have had to go under when there is a big queue in ours) is not as nice and sounds as if it is on its last legs; it squeaks.
  • how lovely the blood letting man is.
  • how marvellous ‘Maggie’s’ is. (A lovely centre just in the hospital grounds that caters for us cancer patients) and  how we can get free tea and coffee in REAL cups, and if we wish we could take all sorts of courses, and get all types of support. Not only is it useful, it is a lovely,  welcoming environment. For example on Friday there had b5442a027c07a801fe7000550_maggie-s-oxford-wilkinson-eyre-architects_portada-393_393p221_pressnew-530x257een a cooking demo with a nutrition lecture, expounding the benefits of a healthy diet and which vitamins and minerals were of benefit and what foods to find them in and what to avoid (sugar!) … then of course you get free food!
  • In contrast, we discovered a shared experience of how certain of the doctors ( we tactfully didn’t discuss which ones) don’t ‘get’ it when we get enthusiastic about looking for ways to increase out chances against this cancer. They, it seems have, with various of us, poo-pooed research on supplements and diet, actually forbidden patients to take any vitamins of nutritional supplements, promoted sugar in the diet(!) and told patients to actually stop certain healthy diets (for example a Mediterranean diet!).  This really worries, offends and confuses patients and relatives, especially when they have researched lots of evidence and doctors then, rather than offering contrary  evidence,  just say that you should you ignore that evidence  just because they say so. (This was by far the least jolly conversation we had. Although I am sure they don’t intent to, those doctors* are very close here to extinguishing any  vestige  of hope for some with the most serious and terminal diagnoses.)
  • how the pampering experience of having your mask being made (see latest fashion accessory) turns into a less entertaining experience of being pinned to a contraption they euphemistically call a bed and being elevated somewhere near the ceiling while they revolve ugly looking machines around your head for 15 mins. Suggestions to improve the experience include: get a better mattress on the ‘bed’ and decorate the machines to make them pettier.
  • possible uses for a pale mauve mesh replica of your face when you are finished with it.
  • and, not to forget the perennial conversation… traffic and parking (again sense of humour begins to fail with that old potato!)

As you tend to meet the same people every day, you do get to get to know them slowly in  weird 20 minute instalments. Can’t wait for today’s instalment.

* I must add that not all doctors so this; some (and in particular some of those I have personally encountered) are lovely, inspirational, sympathetic  individuals who are as much a part of the treatment as the knives and chemicals they wield. I would also comment  that the presence of one of the oncology nurse support team in a clinic definitely adds to this sense of empathy  and  holistic support of the patient as an individual.

Heeding the Call

I don’t know how many people saw the BBC film “The C Word” on Sunday. It was based upon the true story of a young woman’s struggle with breast cancer. Her name was Lisa Lynch and she was diagnosed in her twenties with advanced disease, and she wrote a candid and very humourous blog about her treatment, emotions, and progress. She then wrote a best selling book based upon her experiences. So far so good. The trouble is that although she recovered initially, she did eventually die from its spread to bone and brain.

Watching this was not perhaps the best plan for me, given the similarities. Both bloggers, both determined not to play lip service to the statistics, both joking away through our our treatments, and chivvying  everyone else around us into simular states of  slightly barmy  euphoria.

Lisa was undoubtably  an amazing person and an inspiration to many,  and seemed to subscribe  to one of my main sources of encouragement: the evidence that shows that a positive attitude, a close social network, and laughter make positive difference to prognosis.(see references below) Lisa had oodles of all three factors. Surely someone like that should be one of the ‘lucky ones’… and if she wasn’t why should I be?

(Now this is not looking good in the ‘positivity stakes’: time to play ‘Oceans‘ really loudly and dance around the kitchen.)

Back in gear.

I realise, it doesn’t work like that. No body ‘earns’ their healing, but yes, there are things you can do to to make your journey better, and that was what Lisa did. It was her way, and maybe her gift to all who really want to know what they are up to against and throw themselves wholeheartedly into squeezing the last bit of fun out of life.

But that is where we part company, she and I. What seemed a very similar attitude at first sight, I realise, is not so similar after all. I don’t see my cancer as an enemy, to be kicked in the but. Yes, I did rejoice at Bob’s extraction, but I think this journey is about far more than a ball of malignant  cells that is interrupting a perfectly good  life. It is not about taking an intermission in order to get the treatments done before getting back to normality. No, it is about stopping your life in its tracks and taking stock, it’s about taking a long hard look at yourself and  being prepared to completely change that life. It is not about perpetuating the good, it’s about finding better. I realised, the moment I saw that first scan, that life would never be the same again, and somehow, by the grace of God, I did not fear it.

Today I heard of two women, friends  of a friend, starting their journey down the breast cancer road. They both are heading into surgery today. I sort of hope they didn’t see the BBC film, for as as funny and humorous and poignant and honest as it is, and undoubtably good television,  we (cancer sufferers) need to see more than that.

My favourite  quote of the moment is from one of the stories in the ‘radical remission’* book. One of the long term survivors featured in that says: “When God sends you a wake-up call, you don’t have to die, you just have to heed the call.”

We are all different. We may or may not need the gory details, we may or may not need helpful tips, we may or may not need to share our laughter and woes with others who are in the same boat, but  what we all certainly need is to see,  clearly, is  the nature of that call, for in that lies hope and joy and a vision of a future.

I have my personal vision for a rosy future despite statistics and oncologists ‘version’ of facts.. I may blog about that anon! (Post script: See Here and here and here and here) but only time will tell if I am right.  However, I offer some alternative stories on my ‘testimonies page, and if anyone reading knows of someone in need of that kind of good news, tell them to turn to that.

Also, check out the following references (click on links):
emotion well being has an impact on recovery and survival

Chemo patients who undertook laughter therapy had signicfantly improved immunity

Psychological well being has positive effect on mortality in both heathy and diseased subjects.

Region/spirituality has positive effect on mortality in cancer and in other serious disease 

Taking charge and getting involved in the process of diagnosis and treatment, as well as becoming more altruistic in their relationships with others, improved patient outcomes.

* In Dr Kelly Turners’s research  she studied patients with unprecedented survival. They deployed many varied active measures in addition to standard therapies, but these 9 were common to all.

Radical changes to diet taking control of their health, following  intuition,  taking herbs and supplements, dealing with  emotions, being positive, wide social support,  deepening spiritual connection, and having strong reasons for living.

down with carbs!

imageMost of my lovely frineds have been very tolerant over my dietary choices of late. They have not taken offence when I refuse cakes they have made specially for me and have let me chose the restaurants based on the menu, even when they really really fancy a pizza. Some have even come out in sympathy with me and started to shun the cakes and mashed potatoes. But….for anyone who still thinks i am being a bit pernickery over my diet, watch this!

(click on the word this)

 

 

 

 

 

 

 

Drugs drugs drugs!

Making  up for never availing myself of the wide  selection available at UNI

This is my week’s supply!  I get a fresh carrier bag full next week.

Actually, it imageisn’t quite as bad as it looks. It seems there are rules about how many tablets can be put in a box. (Eg if you need 8 tablets and the rule says 7, you will get 2 boxes, one with one tablet in it.) After I emptied them onto the kitchen table I managed to reduce it into 4 boxes and a bottle.

I am now on day 3 of taking this lot and traveling to Oxford for radiotherapy. It is very friendly there.  The waiting room is full of folk with interesting scars, bald patches, weird and wonderful headscarfes and, on the whole, intact sense of humours*. (So far only one poor soul was lableled “a gumpy old git” and that was by his wife! He took it in good part, so he can’t be that bad!)

The hardest bit was on day one, which had been a long day with extra bits and bobs  needing to be sorted and set up, when the nurse waved me off with a cheery “bye, see you tomorrow”. At which point it suddenly came home to me that yes, this was what daily life was going to look like for the next 6 weeks. However, since that day, we have combined the trips with a pub lunch and a shopping trip. It has all been very pleasant.

And the drugs are all cool ….man!    (going down without side effects.)

* [intact senses of humour?]

Gearing up for being ‘fried’ and ‘poisoned’ (Duvet days)

Radiotherapy and chemo start on tuesday. This basically means they are going to screw me down and irradiate a bit of my brain (a 2cm margin around bob’s vacated residence). I cannot imagine why this would not leave me even more ga-ga than I am right now, but I am told that though my speech might go off a bit as I get tired it won’t necessarily affect me too much. It seems that through careful management of doses and frequency of the ‘rays’ the oncologists are able to give just enough so that any residual malignant cells wither and die, whereas ordinary cells just curl up and have a ‘duvet day’* to emerge fresh as a daisy and raring to go next morning.

Then on top of that they will force me to swallow a poisonous substance every day (temozolamide) that will have the same effect but from the inside. Worse, this poison will run around attacking every cell in my body, not just brain cells! The strategy we must deploy, as with radiotherapy, is to build up the resistance of normal cells whilst allowing malignant cells to drink themselves silly on these poisons.  My simplistic solution is to, again, declare a duvet day in which we allow them to curl up and rest, whilst plying  them with all sorts of nourishing tit-bits of the chicken broth and fresh home cooked food variety.**

I have spent some time researching foods, supplements and medicines to consume whilst on the duvet days. I have sent the list to my oncologist and just hope she doesn’t throw up her hands in horror and disdain. After all, what is most important, it seems to me, is that the person administering all the poisons is not only on top of the case but also quite likes you… and is totally on board with the duvet day principle.

I will keep you posted and ,when i have had time to discuss approved and not approved foods for duvet days, I will post them on one of the ‘treatment’ pages.

*I don’t know if “duvet day’  is a term most people will know. In the home-ed world, where we can still do useful ‘work’ even if a bit under the weather, and don’t even get to have ‘snow days’ when we don’t do go into school, we occasionally declare a duvet day by way of compensation. The idea is that, though perfect well, we stay in jim-jams, drag down the duvet and sit on the sofa and watch telly/read/slob-out for the day.

** This is where the duvet day metaphor falls down a little as the whole duvet experience in our house did sadly involved junk food…

Latest fashion accessory

Got fitted for radiotherapy mask yesterday. They heat up a sheet of pretty mauve  mesh then mould it to your head, which is a bit like having a facial. Then they cool it off with ice packs. Could catch on in heath spars.

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Only downside is, it firmly attached to the bed  so you can’t move. What with the surgery and now this, I am getting quite used to being screwed to tables.

La crème de la crème of glioblastomas. (bob the sod)

That’s what I have. Top notch, rolls royce, the aristocrat of brain tumours. Bob is (was) a grade four astrocytoma, also known as glioblastoma multifome (GBM). He has no redeeming features (apart from his apparent absence from my brain at the moment as far as we can tell from the scan).

I went to see Puneet, my friend the  neurosugen, and then to see the oncologist*, and the lovely liaison nurses in the clinic today. They are the wonderful team who share my philosophy entirely: I am not a statistic.

No one is under any illusion that this anything other than a malevolent  little so and so, but he is not part of me. I am me. He is he. The whole of me is healthy, fit, happy and living life to the full. He is a pathetic little disorganised company of cells, that  has stopped by, and attempted to move in and to bring my neighbourhood into disrepute. He would have us believe that every neighbourhood is duty bound to support such a company, and they are legitimately entitled to housing, food and rights. He is wrong. As long as I do not recognise him as part of me, as long as he remains an alien, as long as my own cells do not acknowledge any of his aberrations as acceptable, as long as we form no friendship with his company, and as long as I condone not a single principal of his deviant beliefs, he will never succeed.

The plan now is to set off with the radiotherapy and chemotherapy. (I will put some more details in the treatment pages for anyone interested, shortly.) The surgery has been really successful, Puneet reckons he got it all, and on the scan, instead of a grey/white lumpy looking tumour i have a hole full of grey gunk which I am told is fluid. I am told my brain will squeeze back into it a bit in time. The radiotherapy will ‘fry’ that  area of surgery, plus a collar of ‘normal’ brain around it, to zap any stray cancer cells that are still lurking in and amongst the good cells, (that is what they do, the little sods). The chemo will add belt and braces to this, to attack the nasty little deviant cells and make their lives a living hell.

Puneet is very upbeat about treatment. He is is pragmatic about recurrence. “Oh they do this!’ Of course they do; they think they have squatters rights! But, in true surgical tradition he seems to relish the thought of diving in again at the drop of a hat with cries of ‘Die, Die, you fiends!” (actually, I cannot imagine Puneet saying such a thing: he’s more of the James Bond of surgeons: silent, calm and in possession of a lethal arsenal of high tech weaponry that he deploys with a mixture of good manners and respect… and just a hint of a mischievous sense of humour in the face of the enemy. He is more likely to say:  “good bye old chap”, than “Die Die”.)

So the plan is that after this asault on Bob, and the total sanitisation of his squat,  we will watch like hawks, and at the slightest sign of Bob’s delinquent  sons, or one of his seedy uncles showing up with a can of cider, a bed roll and a begging bowl, they will be out of there before you can say “scalpel”.

I am cool with this. I read a lovely blog the other day about a lady who had loads of ‘bobs’ removed and is still going 14years on. (see: Cheryl Broyles’s blog on testimonies  page). And to be frank, awake surgery for ‘Bob-removal’ is no big deal*. I had a dental implant a couple of years ago, and that was much worse!!!! So as long as my lovely team are around me, and Puneet is on hand, and my family keep doing the washing up (oh, well, maybe some things are less likely to last than others) we can have a ball.

* six things I would rather do LESS than have awake surgery

  • Clean a really dirty toilet
  • spend 48 hours with food poisoning
  • be stuck in a lift with 12 fat people with BO
  • (or 15 thin people with BO)
  • eat rhubarb
  • have a dental implant

The overwhelming feeling after coming away today is one of triumph. I am almost glad it is worst case scenario:

  • news from now on can only get better
  • we know exactly what we are up against
  • the enemy has no redeeming features in of any kind: we do not need to go easy on him, indeed we do not need to even give him the time of day.
  • everyone has their swords sharpened; I have never seen such display of righteous indignation and resolve of purpose as I did today in that clinic!
  • with a team like that behind you how can you be anything other than confident… even excited.
  • and, best of all, this victory will be no half hearted bit of luck, no throw of a dice,  no random chance ; no one will be able to say “Oh well, they get great successes these days in this feild”, or even, “How lucky they got it in time”. No, this will be  God laughing straight in the face of the enemy. Like the bible story about Elijah  pouring water on the alter to purposely  set his God the hardest challenges, in order to prove that HIS God is the God of the impossible, not just the rather unlikely... I’m with THAT God, and I say: “bring it on!”

 

[* the first oncologist I saw was not ‘Olive’. I shall call her “Bessie”.]

Green juice

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Heathy eating to ‘banish the Bob’ remains key to my lifesyle, and one of the most important things is to eat loads of fresh veg.  I always used to feel pretty self righteous about eating  my veg, but  nowadays I consume mega-factors more than I did, and especially the green verieties. Cruficious veg are especailly important. One way of geting a huge dose staight into your system is in a green juice. To start I made some pretty disgusting ones, then they moved to just this side of tolerable, but today this was spot on. It is a mater of taste but I like to spice up the green leaves (romaine lettuce, kale, broccoli) with ginger and mint and lime. A little piece of apple or carrot adds a little sweetness.  With a breakfast made of a sort of yogourty-porrige  that have invented and which  I love, (made from coconut cream, peanut butter, assorted seeds, and blueberries) and a nice cup of earl grey tea, I am all ready for the day.

see nutrition pages for more theory. I am trying to add to them a bit at a time.

 

 

 

 

Carpe Diem (delight in your boundaries)

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I went to lovely posh lunch with friends. OK, it’s not extreme sports or anything but sometimes it’s not about something huge, or impressive; what it is about it finding the right thing for your circumstance now, in the present moment. And today, it was for  being pampered by ridiculously attentive staff, nibbling on tiny appetisers that have favours that blow your head off, dribbling over a main course the looks like a work of art that paints the colours on your taste buds, then retiring to a soft sofa, overlooking the greenest, lushest, longest gardens beyond, sipping tea from gold-rimmed china.

Yesterday, on the other hand, was for slobbing out with family. (Did I mention how I have the most wonderful family?) And the thing is, when you are content where you are, you don’t always want to go outside the gate even if it is left open.

Having faced a challenge (I think we have concluded that a brain tumour qualifies), one outcome is that you reassess your boundaries. What are the parameters that define your life: your commitments, responsibilities,  schedules? What must you do, what do you need to do, what do you want do… and will you ever manage any of it? In the end, it comes down to time, because suddenly time seems somewhat shorter than you had ever imagined it might be. (I will never again moan about having not enough time available!!!) Time is the ultimate boundary within  which we tend to corral everything we do.

But I have now realised that time is very malleable. It wends its merry way all around the garden, choosing little sort cuts, traveling generously in great meandering curves, taking diversions through little secret arbours, racing along in  great long, perceptive-altering lines, and dawdling  in pretty little dalliances, where you can lose yourself.

So, yet another advantage of this little adventure with Bob has been that I no longer care about time… or its boundaries. I have been taken to ‘places’ I never would have imagined,  places that were definitely not on my schedule; and through that detour, I  have had to use qualities and skills I never planned to use, not because I conquered or somehow developed all those qualities; I neither had nor needed time to learn them, they simply appeared precisely as and where needed… because I, like every human on the planet,  always had them at my disposable, I just didn’t know it.

I am not a captive of time, or any other prison. I have have remembered that I am and always have been free. And so are you. You see,  freedom is not about the absence of  gates and fences; it is about knowing what you have right where you are, and wanting the boundaries to be nowhere else.

“The boundary lines have fallen for me in pleasant places;
surely I have a delightful inheritance.” (Psalm 16)

640px-Yvoire_cadran_solaireYou don’t have to get cancer to understand this.

So, yesterday a lazy Sunday, today a decadent lunch, tomorrow…

Seize the day!

 

 

moment by moment

As might be expected, along with the amazing encouragement I have received through this blog, I have in the last couple of days heard from a few people who have also undergone  journeys  with cancer or similar serious illness. Some of these people have suffered much more than I; sometime their roads have been long, or painful. Though I try  to offer joy and humour in my experiences as I see them,  I know that I may seem, to such weary sojourners, naive or worse.  They may have been there, done that, things are NOT always all roses, sunshine and eternal hope.

Yet, all of life is a journey. We all travel all of it. From birth, through the those faltering steps of childhood where we are nurtured and guided, towards indepencance (and rebellion), passing through the whole range of life experiences: our own brands of slavery, desert journeys, promised lands, exiles and homehomings. And finally all of us will one day lay our heads on our pillow for the last time, when  nighmares and dreams will touble us no more. I hope, no less than anyone else, to do do the same, but only to so do with a sense of my life having been as it was planed to be, and I having missed nothing of its joys.

Be it brain tumour or dissentery, be it  dementia or maddness, be it misfortune or accident, be it in years or decades that that final moment dawns for me, every moment I have experienced will have been as much a part of who I am in the end, as anything else. Our triumphs,  our treasured moments, our fondest memories, our accolades, are no more than remembered stories. Our moments are reality. All of them.

Each of us is individually set in our own unique  place in history, a palce that is ours alone, like a single stitch in a  infinite  tapestry.  What ever we think of it, no how insignificant it looks to us, no matter how  short or long it takes us, it  is an indispensable part of the amazing thing we call creation.

One lady I know of can only take one day at a time right now. She has run a long race and she now counts her life in months and days. And, when even days become to exhausting to count, there will still be moments. For all of us will in the end count  not in days but in moments. And this is as it is meant to be, oh that we would disciver it sooner!  For  the whole of eternity is contained in each single moment of time. And those of us who, through some turn of fate, come to better understand the precious  moment in which we live, may discover a very special gift. In that moment, we are closer to the reality of  life, more sustained by the power of eternity,  party to a  bigger and more substantial existence, and nearer to God. People, who have managed to find the secret of the moment, have always understood this.

To see a World in a Grain of Sandthe-present-moment
And a Heaven in a Wild Flower,
Hold Infinity in the palm of your hand
And Eternity in an hour. (William Blake)

To Zen Buddhists the importance of each moment  of each day,  is of profound insignificance,  and every day is made of 6,4000,099,980 such moments. Each one is precious.*

The modern practice of ‘mindfulness ‘ draws from similar philosophies and helps some people to rise above the transient things of modern life that plague us all.

WP_beautifulinitstimeIn the Christian faith, the mystery of  eternal life is a central theme. But, similarly, it is no vain future promise to be earned, no reward to be tacked on to the end of our earthy lives,  but rather something we live today, in every moment; there for the taking.

The scripture I like best that describes this is Ecclesiastes 3:11:

He has made everything beautiful in its time; and he has planted eternity into man’s heart. 

And so, as every moment of our lives plays out, hope and love and peace and joy are there for the taking, one moment at a time, which is after all, the exact length of time any of us ever have to enjoy anything.

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* The Shobogenzo (the Treasury of the True Dharma Eye)

Blessings and curses.

“I have set before you life and death, blessing and curses. Now choose life.”  (Deut 30:19)

This is one of my favourite pasiStock_000016900250XSmall-2sages of scripture. It falls towards the end of the long journey Moses made with the children of Israel across the desert after their escape from slavery. Moses, sadly, is not going to ever enter the promised land, but before he dies he reminds the people of all they have come through  together and reassures them that their goal is in sight.

It is a reminder to us that the ‘promised land’ (our goal) is there for the taking. It is not wishful thinking, it is not a mere whim, it is not vain hope… it is promised.  No matter how improbable it may look like from the desert… all we have to do is choose it.

 

Another lovely spring day in the world.

imageSix days since brain surgery! And I feel great.

The sun is shining and all is well.

My speech is still cranky, and my spelling too, and I have some slight sensation loss in my right arm, but can go everything fine with it. I just have to remember that I am not feeling temperature correctly, so for example must use my other hand to check the bath. I also need to be careful I don’t dribble tea cups whilst I am standing, because I am not 100%  sure of the position of the cup in relation to gravity. This is only a problem when I am pontificating about about my views on the universe and everything, whist waving around a hot beverage, as I tend to do. Given I really am lucky to be alive, I really cant complain about no being able to pontificate and drink at the same time.

I am taking dexamethasone, ( a steroid) to combat any swelling, which may well be responsible for there residual  symptoms, which will tail off over a couple weeks. This was begun because I noted the sensation loss a few hours after coming out of surgery. Since it wasn’t there to start with, I am very confident (as is everyone) that it will go away.

Now the drama is over ( mainly) I have time on my hands, and since everyone is being so helpful, I have way too much thinking time. Unfortunately for all of you, this may just ead to more “pages” in coming days, containing my wacky perspectives (you have NO IDEA how many  goes I had to have at that word!) I think I will keep the worst rambling ones out of the main blog area;  look for them under the drop down menus if you are bored enough.

Above, in case you are interested, was what I looked like today.

If anyone wants the full ‘axe murder’ scar in its gory detail, (without the scarf) let me know. I will put it up by popular demand only!

Xx

 

home sweet home

Well, got home last night,  and and everyone welcomed me and I had awesome home cooked food and sleep in own bed, it was ALL AMAZING!!!

My typing is still c***p (don’t even know it I have enough stars in that) but hope with spell check and the odd crazy word I hope you will understand  me.

NEWS:

Nigel, is the MOST talented and skilled and wonderful nuesengeon on the whole planet and has totally saved my life!!!!!   I tell you, as you walk out of hospital with a huge scar, and bar few spilling mistakes, everything totally intact and look anew at the world outside, with everything so wonderful and special, it really does come home to you in a BIG way! Nigel  also, as it happens, it the most lovely lovely human being you could every hope to meet. Now if you have someone fishing inside you brain, I know the most impotant thing is that they know which bit is which, but take it from me, having someone you truely  rate as one of the nicest people you have ever meet goes long long way.

Now, I am afraid that Nigel has rumbled the blog, and has given me permission to use his proper name, but I am slightly worried that everyone with a brain tumour will beating a path to his door and the poor man will be inundated. But on the other hand, I am told there is a real Nigel who is also a nuresgeon  who, no disrespect, may be very good, but is not as  good as MY Nigel.  So from herefore (that dosent right spell speck?) I will use his first name. Meet Puneet, everyone: the best neurosurgeon the world. (I feel we should we on first name terms as he has handled parts of me other people never will, in any case, i can’t handle  his second name as it has too many a’s and l’s and h’s in combinations in the wrong places for my speech pediment to manage the moment.)

So, bye bye Nigel, we have all loved you to bits but hello Puneet. (hope I have spelled it after all that!)

I must also mention the whole team who looked after me. There was also a totally awesom anatasthenet (! don’t think spell check knows wha one of those is) who ministered  the sedation at important moments (to stop me swearing  needlessly at Puneet at the beginning when he took a saw to my head, which I have to admit is a little daunting), also the junior doctors (especially the one who sat under the ‘tent’ with me with the laptop to help to testing my word recognition … sorry about the garlic!), the whole team in theatre who stood all for that time assisting and having everything ready on hand (imagine if Puneet has asked to the jigamathip only to find someone had to go wash it up for him after the last case), and the lovely very skilled and kindly team of nurses on the ward, who breath light and a lovely sense of “everything is absolutely as it should be”  every time they enter the room. Believe me, when you are a patient who really has no idea how it things are supposed to be you cannot or overrate that feeling.

NEXT:

Here’s the low down on what brain surgery feels like: for those as a nervous disposition, you  may wish to miss this, but you shouldn’t because its not as bad as you think.

First you are positioned on your side and made super comfortable… I really mean it , nothing is too much trouble!  Then they put a few lines and things in, which is OK but not so much of a pampering experience. Then they put this frame round your head, which I guess must stick into your head but honest you really don’t feel. From there on you are stuck to the table, they can reach all around you but are totally rested and secure and comfortable. Honestly, its so far easy peasy.

Then you head into the operating room proper (we have been in asntherih (!) room so far) and you meet the team, all gowned up and ready to go. I get blankets and more pampering. I can see all my scans all in lovely tecnichoulour up in the wall and Nigel (I mean Puneet) showed me how he can manipulate then in all three dimensions, wonderful! Sadly I lost sight lost sight them a bit because I had to have a sort of perspex  tent over me. That was good, because I could can see and was not in darkness an felt part of the ‘team’.

Then the athenethnes (! I’ll get this word in the end) gave me the intravenous equivalent of a stiff gin and tonic. (I don’t like gin, so requests to a chilled glass of sauvignon and again nothing was too much trouble). Then Puneet numbed a big area of my scalp (which was no worth than dentist injection) and once it took effect he opened a flap of skin and took his saw and took out round lump of my bone out. I REALLY DID NOT THING A THING.

I made sure to remind him to keep it safe; if that was me I would never remember where it was at the end.

The anathneset (!) made the sauvignon wear off (sport sport) and then it was all nice conversion, laughing, getting to know each other, after we were all going to be together of the next five hours!

As the op wore on, I was given tests. The laptop had a program with pictures and spellings I had  to do. As  I talked more rubbish the junior doc told Puneet (who cannot see the laptop under my tent) and he avoided vital parts. Next he tested my arm and face. That was WEIRD. He would probe my brain (they use a little instrument not his finger)  and suddenly my arm would shoot out like an alien and try and attack the poor junior doc! I don’t know if he had a grudge in for him, but knowing Puneet (who has not a bad bone in his body) it is more likely that this is a right of passage to all juniors docs on the neurosurgery specialty. Until you have had your eye poked out by a patient under the knife you cannot graduate to next stage. Well done, I think he passed, neat bit of ducking.

Before you know it Bob was out in a bottle and after a bit of mopping up, and a  bit of  tidying up, we (by now I do really feel part of the team) were ready to put that bit of skull back in. (anoth of glottal of snauvigaun for that bit)

Back to recovery for an hour where they test ‘vital signs’ every few mins, and the team came and said out every everything was fine and dandy, and then off to the ward where my relatives were waiting.

Everything  just perfect!!

Wow amazing is that!!!!

I can’t say I totally recommend it over and above a nice holiday, or even a extreme sport experience, but if there is someone out there who find themselves up for it for good reason: go for it, it’s not the worst thing in the world and it can  (with the right team and the right fame of mind), it can even be  kind of sort of fun. (maybe)

Day one after surgery

Bob is gone.

i sale an  eretentin afternoon apteri g with Nigel yeretile, with iscitting concvetation. No a  noce a monet mont. My speech is a litled wodent and that tisy recoventer but as you can see kmsor mt spelling is absolutely rubbish. I shobs this will imtpovemnt os this blog jwill not be morent wort worth reading.

(Translation by Sue.

I had an entertaining afternoon together with Nigel yesterday, with scintilating conversation. Not a dull moment. My speech is a little worse and hopefully this will recover but as you can see my spelling is absolutely rubbish. I hope this will improve or this blog will not be worth reading.)

Wath this pLace!!!

Bye bye Bob

Well, suddenly it’s upon us. Got a voicemail this morning whilst in hairdresser’s to say ‘come now’ we have a bed. So hot footed it over here and spent the afternoon having more scans. Then Nigel came and said he would do his best not to make too much of a pigs ear of my new haircut.

Surgery is scheduled for mid day tomorrow, so he let me out to lave a last supper with friends in town. (Not sure the nurses approved, but Nigel is in charge!) We found a turkish  restaurant round the corner and  I chose a simple shish kebab and salad, but think it had a tad too much garlic, sorry Nigel!

I am expected to be talking even more gibberish for a while after the op so bear with me if next few blogs are not literary masterpieces.

Say bye bye  to Bob everyone. We’ve loved having him but will secretly be glad to see the back of him.

xxxxxx

 

 

Hope v satistics, don’t make me angry!

Ok. Despite my newfound sense that Gog (aha, Bob strikes again… GOD!) is in charge and therefore all is right with the world, some things still make  me want to take over and bang heads together.

Below is a link to a an article about the response of a 48 year old wife and mother with late stage cancer to the failrure of Lord Saatchi’s Medical Innovation Bill to make it through the House of Commons. [ Since the death of his wife, Josephine Hart, to ovarian cancer, Lord Saatchi has campaigned to change the law so that, with consent, doctors can treat patients dying of cancer and other diseases with new and innovative treatments, instead of having to stick to failed standard procedures, as the law currently requires]. Sadly, the bill failed to be passed. Norman Lamb, the Lib Dem Health Minister, blocked it on the basis that “some highly vulnerable people, desperate for a chance of recovery or remission, could be easy prey for exploitation by the few unscrupulous practitioners who peddle false hope.”

Sophie Sabbage makes the points in response to this stance in her article .

 

I would only add:

These people are confusing hope and statistics. To tell someone thay have a 90% of survival when it is actually only 5% is a false statistic. Tell them they have a 5% chance of suvival and they can be in that 5% is hope.

“We must accept finite disappointment, but never lose infinite hope.”

Martin Luther King, Jr.

 

 

on bikes and beansprouts

A new Bike! of course!

Since I am going to be unable to drive for two years, I need to get around. Now, no offence to our local bus service but it doesn’t lend itself to nipping to the local budgens when you run out of eggs. It only runs every half hour at best, it’s a 10 minute walk to the stop, and costs … well too much.

Now I already have a bike, but it is 25 years old, is rusty and has brakes that either don’t work of are jammed on. Yes, I definitely think a new bike is perfectly in keeping with my needs and my new heathy lifestyle. I am sure Bob would hate it. (I can already hear you saying ‘I told you so,’ Jenny!)

IMG_1224He also hated my lunch yesterday, took a very dim view of the green juice I had with beakfast, positively cringed at the blueberry and coconut cream smoothy I had mid morning, and by dinner time, when served up fish, salad and sweet potato chips, was thoroughly disheartened, having had no donuts, crips, biscuits, or even a sandwich all day.

He spent the night grumpily listening to his tummy rumble.

I, and my native brain cells, on the other hand, were stuffed to the gills, glowing with heath and energy, and put our feet up in font of the telly with a nice cup of ginger green tea,  very  appreciative of  this new type of ‘ fast food’: if you chuck a lot of green things together, add something red, orange, or yellow, (not jelly babies or similar, you know what I mean)  and bejewel it with nuts, seeds, and lace with a healthy protein source of your choice, season and toss (or stir fry)  it in lashings of good fat or oil,  it takes less time than heating a ready meal, and about the same time as making a sandwich. (Even sweet potato chips take less time than oven chips)

You even have time left over to write a blog post. (or cook your son an entirely unhealthy alternative, on account of his belief that all things green are poisonous)

Things to thank Bob for

without Bob I would not have…..

learned how to write a blogsmileys

learned how to ask for help and in the process found out how special my friends are…

(or how many i have!)

begun to drag all the bits that make up me into one whole person (that deserves more explanation so I will probably put something somewhere else about that, though it may need another page… of which I have too many already)

importantlearned what is important and, more to the point, what really is NOT.

met new friends and got close to them really quickly (life is too short to stand on ceremony)

sorted out my filing system!

Noticed God’s hand in everything and particularly in the the everyday over and above the ‘religious’.

seen quite how great, and wondrous, and GOOD life is.

known profound happiness, and understood that happiness is not dependant on circumstance. (I have always said it was a state of mind, independent of material stuff or good fortune, but until you know it in circumstances like this you don’t really appreciate just how far that independence stretches.)

learned how to make use of a slow-cooker.

discovered how yummy and versatile coconut cream is.

changed to a much healthier diet and lifestyle! (shutting stable door, you may say, but i have also realised that though some things cannot happen soon enough, it’s never too late!)

 …and then there are all the ‘coincidences’ that occurred in the weeks and months in the lead up to my diagnosis which were Godsends perfectly timed to  provide in advance for me and Bob at a time such as this… and so in a sort of way I can also  thank Bob for…

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moving to ‘wellhead cottage’ which (apart from having a very  encouraging name under the circumstances), is idyllic and  just round the corner from my best buddies who had been on hand for everything.

finding myself in a new church  (after 12 years of intensely disliking all churches and never darkening their doors) which, to my astonishment  is AMAZING… and from that, the love, the fellowship, the prayer, the blessings, the wisdom, the caring, the music, the socials, the donuts and coffee… (not necessarily in order of importance)

finding new friends locally… just in time, and perfectly placed, to offer lifts and favours.

having been contacted out of the blue by a load of old friends  and family with whom I had almost lost contact, who have since become an added  source of encouragement, love and prayer.

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I wish!

Ballet! (especially for a particularly insane friend who made me come along with her, the teacher who dismissed my protestations that I hadn’t danced for 45 years and ordered me to take my shoes and socks off and get on with it, and for all the other ladies there who have made me feel that its not insane to leap around in that way ‘at my age’. ) I love it! I am sure I would never have begun it if i had already known about Bob. (though Nigel says go ahead, pirouette away!)

 

 

 

 

pre-op assessment

Went to the hospital for my pre-op assessments today. This involves blood tests, ECG height, weight etc pus lots of questions. Amongst the usual about past illnesses and so forth was a question on allergies, including was I allergic to peanuts? Why, I asked, was that relevant? Turns out I have to stuff some sort of peanut based gunk up my nose pre-op.

Are they hoping to entice Bob down with tasty treats? Sneeze

Or hoping I’ll sneeze him out?

No, it turns out it contains antibiotics to sterilise my snot. (so Nigel and the patients around me don’t catch anything from me)

A thorny problem!

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I have something prickly growing in my brain!

In this blog section I write personal thoughts and musings along with (hopefully) helpful information on brain cancer (and other cancers).The blog posts are a diary of events and thoughts as the occur to me on my journey. The latest post will appear at the opening page and you can scroll down for earlier posts, or click in the side menu of ‘recent blog posts’.

In contrast, the menu of pages (Top) contain topics of information and interest. Many have drop-down menus.

Feel free to comment on any of the above by clicking on the ‘comment’ section at the end.

An intro and link to the first blog post is on the ‘about’ page:  here. 

Introducing Bob

Last wesnesday I went to meet my neurosurgeon for the first time.

I liked him immenseldy, apart form the fact that he had the thankless task of explaining to me that I have a malignant brain tumour, and a pretty horrible one at that.

Before I say any more I must ask you to excuse my spelling, I do know that I am writing things incorrectly (honestly) but I have decided to leave the erroress on this first blog so that you can see how this tumour, whom we have christened Bob, and who resides in the speech area, on the left frontal lobe of my brain, is affecting me. Continue reading Introducing Bob