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 scriptwriter are reading this maybe you should read this.

*In case you were wondering the picture at the top is from the last time I 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’)

😁

 

 

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’

IMG_0597

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.