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.”