At the Public Health Collaboration Annual Conference in Manchester I met Dr Tanya Malpass who explained how she developed cancer but has recovered. When we spoke she was looking very well and so I asked her to describe her experience. Here is her story.
The initial stages
The first indication I had that there was anything wrong, was back in January 2015 when I started talking in spoonerisms. It was all a bit of a laugh to start with and most people didn’t notice when I got tongue-tied (apart from close friends), but it was totally out of character (and out of my control). After a couple of weeks, my friends persuaded me that it was no longer funny and forced me to seek help. The GP tried to assure me that it was probably attributable to stress or tiredness, but because I had enough ‘ticks’ on the clinical algorithm for a possible stroke, he referred me for an urgent MRI. To be frank, I think he was ‘bending the rules somewhat as I has no neurological signs whatever, apart from saying ‘soon’ instead of ‘spoon’ or ‘exact’ instead of ‘extract’. I doubt I would have been referred so promptly if I had not been a doctor myself!
Bob the Blob
Sitting with a neurologist, my scan up on the screen, I heard him say: “Well, it’s not a stroke”. I didn’t actually need to be told that – having been a consultant in A&E until my retirement, I immediately recognised the golf ball-sized “blob” in my left posterior temporal lobe (the speech area) as a brain tumour! It was a huge shock, possibly made worse by the fact that I know too much for my own good about brain tumours (or as it often, even now, comes out of my mouth, “brain tunas”). None were good news, all I could hope for would be a low grade, more benign variety. We named my unwelcome guest “Bob the Blob”.
My neuro-surgeon wasn’t able to put my mind at ease. He thought Bob was almost certainly a glioblastoma grade 3 or, more likely, grade 4, the most aggressive kind. It still seemed laughable; at 61 years old I felt fighting fit, I was on no medication, I had had no fits or dizzy spells, not even so much as a headache; I walked, I skied, I ate well, I slept well, and I had recently taken up ballet again after over 40 years and was loving it; yet there it was: ‘terminal’ cancer.
I was offered the choice of a biopsy first to find out the histology but I had no desire to continue my relationship with Bob for any longer than necessary. The first thing anyone looking at a scan like mine (whether they have any medical knowledge or not) is “Eeek! Get that out of there!”
Operation on St Patrick’s Day
An awake craniotomy was scheduled for 17th March 2015 so that I could talk to my surgeon as he explored my brain. That way, he could take as much as possible of the cancerous tissue whilst retaining as much of my speech and other areas as he could. The problem with this type of cancer is that it is not easy to see where the cancer stops and normal brain begins, and the cancer cells burrow in among normal neurones making it nigh on impossible to get rid of it all.
During the operation, the surgeon used little probes to see what parts of my brain did what, whilst I played a game of ‘name that object’ on a laptop with a junior doctor. When I tried to say “penguin” and “guitar” came out, or “duck” came out as “clock”, my surgeon was alerted to the fact that that bit of brain had connections to some useful words. Anything that produced no such errors could safely go in the bin. The motor cortex is very close to the speech area and at one point a probe touched something which made my right arm punch out, involuntarily aiming a right hook at the junior doctor! I joked that this must be some sort of rite of passage for junior doctors. Thank goodness speech is centered in a totally different section of the brain from the ability to see the funny side!
Post-operatively, I felt absolutely fine, though my speech was initially somewhat more cranky, and my spelling was even worse (to the delight of my profoundly dyslexic son who now corrects my spelling). My surgeon had warned me this may happen and that it would be temporary. I was assured that the surgery had gone well and that they had got as much of the ‘tuna’ out as possible. When the histology came back it was a real blow, though no real surprise, to discover that Bob was a nasty GBM grade 4. He had no redeeming features – the news was the worst it could be.
Two days after my operation, I was discharged home. Apart from an impressive horseshoe shaped scar above my left ear (looking as if I had been kicked in the head by a shire horse) I looked and felt completely normal. My family were all there to pamper me and friends rallied round. My 2-year post-craniotomy driving ban (ironically 6 -12 months longer than my prognosis) was the only remaining problem, as I could no longer get my autistic son to tutors, sports events, social meet-ups and exams. He was going to need to get a whole lot more independent quickly, and I was going to have to considerably outlive my prognosis. We both rose determinedly to the challenge.
Discovering the links between diet and cancer
A resource I turned to from the moment of diagnosis was a book – “Eat to Outsmart Cancer” by Jenny Phillips. How could I not? Astonishingly, it had been finally published the very week before my diagnosis. I had a signed copy sitting on my coffee table, and the author, an experienced nutritionist and cancer survivor also happened to be a trusted friend. I had even proof-read her manuscript. Back then, I had checked for sense and grammar. Now, I was listening! Thanks to that providential occurrence, I changed my diet, changed my life and most likely my whole prognosis.
Two other books that were important to me in those early days were Ben Williams’s book – “Surviving ‘Terminal’ Cancer” and Dr Kelly turner’s book “Radical Remission”. From there I began my search for long term survivors and things that may contribute to that outcome; I found there was plenty to be hopeful about.
Oncologist says “eat sugar”
I presented my findings to my oncologist but she was very negative, flatly denying the possibility of long-term survival. I pressed her about diet and supplements, but all she would say was that I should ‘do nothing for myself for fear of making things worse’, and that ‘no one survives this disease’. (Surely an oxymoron? What could be worse than not-surviving?) I even gave her a sizeable list of scientific papers and case studies, which she just didn’t wish read let alone consider. I asked what she thought of a low carb, high fat diet. She told me that my body needs carbs and I must eat some sugar.
A new specialist
I slunk away but, in the absence of better advice, stuck with my ketogenic diet, healthy eating and some appropriate supplements. I just didn’t tell her. Had she honestly and openly discussed these things with me, I would have happily considered an alternative point of view. But she didn’t. I saw her weekly throughout the initial intensive 6 weeks of daily chemo-radiotherapy. All she ever got out of me was ‘I feel fine’ and all she ever told me was ‘Your bloods are fine.” Not really a relationship. Then, after one particularly depressing follow up visit, I discretely transferred to a different oncologist. This made all the difference. If I was going to become one of those unexpected survivors, I needed someone who would go along with my feelings of hope and expectation and take a balanced view of any ‘alternative’ therapy I may wish to pursue. My new Oncologist was right on target and has been an encouragement and source of hope ever since.
Working on my diet and lifestyle
By this time I was being very proactive, putting everything right in my life – eating good healthy food, green juices, fresh organic veg, fish and meat, and following the ketogenic diet, taking plenty of exercise, making time for friends and new activities, accepting everything offered (help, company, advice, support and prayer), cutting down on anything negative, like alcohol, stress, nasty processed foods, any depressing situations, and upping everything positive – fun, laughter, friendship, excitement and more laughter. There is good evidence that all of these factors improve prognosis.
During the standard six weeks of radiotherapy, which entailed a daily trip to the regional oncology centre, an hour each way, as well as taking daily temozolamide, an oral form of chemotherapy, I was completely dependent on friends to take me there. Despite having my brain fried every day, I was otherwise having a lot of fun, going to restaurants, attractions, gardens, shopping and visiting friends, in and around Oxford. In fact, I had a ball for six weeks. All this left me no time to feel sick or tired or develop any side effects. I would get home and sleep like a log, knowing I was entitled to be tired not because of the illness but because it had been such a full and fulfilling day.
Patient power…depressed oncologists
Whenever I turned up in radiotherapy, there were always lots of people in the waiting room. You get to know people very quickly under such circumstances and we became firm friends. Soon, un-squashable hope, raucous laughter and an indomitable spirit pervaded the atmosphere in the waiting room every day. It helped us to counter any negativity that was often dished out by various oncologists. We decided they must be depressed, and felt it was our role to cheer them up by our long-term survival. We held a party at the end of our radiotherapy and now meet up every couple of months or so for a pub lunch. Two years on, we are all a lot richer for having known each other and, so far, every one of us is outliving expectations.
The end of Bob the Blob
A further six months of chemo at home followed, this time with a higher dose of temozolamide one week in every month. I sailed through my treatment with no side-effects beyond a fetching bald patch where my hair had fallen out from the radio. It grew grow back just fine, if a little curlier than before. I rejoiced in my last round of chemo on 21st December 2015, freeing me from weekly bloods and clinic trips just in time for Christmas, and then on 13th January 2016, which coincidentally was the anniversary of the first symptoms appearing, I got the results of my post-chemo scan – all clear and no evidence of Bob the Blob.
Oncologists remain sceptical
Two and a half years on, I remain on three-monthly scans because the protocols (unlike me) expect Bob to return. Scans and symptoms stubbornly remain clear and they have even had to give me my driving license back! Am I one of the lucky ones? According to some oncologists, there is no such thing as lucky recovery. Treatment is proven to be pretty ineffective; in case of GBM is said to only add a few months to lifespan. They even prefer to excuse a good outcome by blaming inaccurate diagnosis at the outset rather than admit that there are things outside of standard treatments that considerably improve the prognosis. Scarred by my initial encounters with oncologists, I talk little about diet and lifestyle in clinic unless asked direct questions. They do, however, know I am ‘ketogenic’ and watch with bemused interest as I dance into clinic and answer ‘no’ to every symptom they enquire about. They have even explained to students in training about my ketogenic diet and healthy lifestyle and the fact that I am doing unusually well, without actually saying that they may just be linked. Maybe those new doctors will make the connections and dare to be different.
Hope is crucial
I really want to encourage other people to feel the joy and hope that I have, although I sometimes worry whether, by being so upbeat when others feel sick or anxious, I am doing the right thing, but I can only be who I am. If remission and healing are even remotely possible, then there are grounds for Hope. I am convinced that hope and expectation are very powerful treatments, without which even the best medical care can easily fail. And that is essentially my message. Neither patient nor doctor should ever abandon Hope. But how are doctors to manage patients like us with hope in their hearts when they are hemmed in by strict protocols of treatment that don’t offer much hope? This must change.
Spreading the word
To spread the message of hope, I started writing “Bob the Blob’s Blog” – My life with (and without!) a brain tumour called Bob and later a soon to be published as a book “The Hope that I have – to remission and beyond.” Both help to explain my spoonerisms, tell of my escapades though treatments and my developing thoughts and understanding of what Bob has taught me. I explain the things that I think have contributed to my effortless journey and astonishing good heath. At the outset, the most anyone would offer by way of encouragement came from my surgeon. This lovely and talented man said he would expect to see me in around 12 months with a recurrence, but not to be disheartened because he would go in again and resect the recurrences, as many time as it remained feasible. I am already year and a half overdue!
Clinicians really must listen
I can’t prescribe a cure for cancer and I do not advocate abandonment of standard therapies but I do urge clinicians to listen to patients, to do the research the patients have done, and never, never dismiss lifestyle and nutrition as irrelevant, let alone forbid these sources of hope and healing.
A final thought
Brain tumours are the biggest cancer killer of children and adults under the age of 40, yet just 1% of the national spend on cancer research has been allocated to this devastating disease and unlike other leading cancers, like breast and childhood leukemia, prognosis has not improved in recent years.
This is an absolutely wonderful story. It just shows what can be achieved by taking a very positive open-minded approach to the disease. This is no isolated result. There are already several other case histories on my blog. The unfortunate aspect is that so many are not aware of this information, while others are discouraged by the oncologists. In reality there is nothing to lose by trying an LCHF diet and there is a possibility that it may be successful as Tanya and others have demonstrated. I do hope there will be great interest in her book when it is published. Furthermore there is a compelling case for much more resources to be devoted to relevant research. There is little doubt that this approach offers much greater potential than many of the strategies that underpin most of the conventional cancer research effort.