Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
“Sitting with a neurologist with my scan up on the screen, I heard him say: ‘Well, it’s not a stroke’. Being a retired doctor, I didn’t actually need to be told that – I immediately recognised the golf ball-sized ‘blob’ at the back of my left temporal lobe as a brain tumour.”
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, although totally out of character and out of my control, and, apart from close friends, most people didn’t notice when I got tongue-tied. 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.
Sitting with a neurologist, with my scan up on the screen, I heard him say: “Well, it’s not a stroke”. Being a retired doctor, I didn’t actually need to be told that – I immediately recognised the golf ball-sized “blob” at the back of my left temporal lobe 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 as brain tunas. No type of brain tumour is good news, but all I could hope for was a low grade, more benign variety. We named my unwelcome guest: Bob the Blob.
My neuro-surgeon was unable 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, when I had never felt fitter, was on no medication, 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. To my mind, the first thing anyone looking at a scan like mine, whether they have any medical knowledge or not, would be: Eeek. Get that out of there!
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 centred in a totally different section of the brain from the ability to see the funny side!
Post-operatively, I felt absolutely fine, although my speech was initially a little 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 GBM4. He had no redeeming features – the news was the worst it could be!
Two days after my operation, I was discharged. Apart from an impressive horseshoe-shaped scar above my left ear, I looked and felt completely normal, although it probably appeared like I had been kicked in the head by a Shire horse. My family were all there to pamper me and my then 17-year-old son, Freddie, who has Asperger’s syndrome (a form of autism) and who is home-educated, was relieved that I was back. My two year post-craniotomy driving ban, which ironically was six months longer than my prognosis, was the only remaining problem, as I could no longer get him to his tutors and exams. Freddie 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 joyfully to the challenge.
Two books that were important to me in those early days were Professor Ben Williams’s book – Surviving ‘Terminal’ Cancer and Dr Kelly Turner’s book Radical Remission. A third resource was Eat to Outsmart Cancer by Jenny Phillips, which providentially was finally published the very week before my diagnosis, the author being a trusted friend of mine. I had even proof-read her manuscript. Back then, I had checked for sense and grammar. Now, I was really listening to her message!
Thus began my search for long-term survivors and things that may contribute to that outcome; I found plenty to be hopeful about.
Something I learned early on is that oncologists are not always on board with this tactic. They can be very negative, flatly denying the possibility of long-term survival in cases like mine where the statistics are grim. Many of the people I have met have had terrible experiences with the way news is broken. Then, if we talk about diet and supplements, or alternative treatments, we all too frequently are instructed to "do nothing other than take the chemo, for fear of making things worse". I know of patients who, when asking about cases they have read about of unexpected remission, such as Ben Williams and Dr Turner's case studies and the many others that are published, receive the retort: "No, nobody survives this!” Goodness! How much worse do they want us to think it can get?
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. Fortunately, I found the wonderful Dr Claire Blessing (the clue is in the name), an oncologist at Oxford's Churchill Hospital. She has been a great source of hope and encouragement. Along with the specialist oncology nursing team, and my highly skilled and very lovely neurosurgeon, Mr Puneet Plaha, they persuaded me that I am not a statistic. And, whilst never pretending my glass was even half-full, they did a great job of assuring me that the dribble in the bottom was great news and was going to be ample for our needs.
By this time I was being very proactive, putting everything right in my life – consuming good healthy food, green juices, fresh organic vegetables, fish and meat, and following the ketogenic diet (recommended by many nutritionists for cancer patients). I was also taking plenty of exercise, making time for friends, family and new activities, accepting everything offered, including help, company, advice, support and best of all prayer, cutting down on anything negative, like alcohol, stress, 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.
I had the standard six weeks of radiotherapy, which entailed a daily trip of an hour each way, from Aylesbury, where I live, to the regional oncology centre in Oxford, completely dependent on friends to take me there. Apart from the radiotherapy, I was taking daily temozolomide, an oral form of chemo. 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, along with the friends giving me lifts. 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, or the treatments, but because it had been such a full and fulfilling day.
Whenever I turned up in radiotherapy, there were always lots of people in the waiting room. You get to know each other very quickly under such circumstances and we became firm friends. Before long, 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 dished out. Oncologists, we decided, must be depressed and we 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 six weeks or so for a pub lunch. Over a year on, we are all a lot richer for knowing each other and, so far, are generally outliving expectations.
A further six months of chemo at home followed, this time with a higher dose of temozolomide 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 due to the radiotherapy. It had been week four of my six week stint when that started. Ironically, I was being driven home by a friend and was just saying how amazing it was that I had no side effects, not even my hair falling out, when I put my hand up to the left side of my head and a large chunk of hair fell out! It made us laugh.
Following radio, my hair began to grow back, black and curly, rather than my natural straight and silver grey, so now I resemble one of those curly-haired pie-bald guinea pigs! I quite like my new hair, and am always getting complimented on it, although already the curls are starting to loosen and it looks like it will eventually return to being straight again, though presumably still pie-bald.
I rejoiced in my last round of chemo on 21st December 2015, freeing me from the, now monthly, bloods and clinic trips just in time for Christmas. 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!
I am now on three-monthly scans because the protocols (unlike me) expect Bob to return. I had another clear scan in April and I am feeling cock-a-hoop that this scan was unchanged without any form of treatment, apart from my diet, lifestyle and certain supplements. Three months freedom! It is amazing what you can squeeze into a three month period. My next adventure is a trip to the States to visit my daughter and son-in-law, who had to move over there for work. Naturally, they had been very concerned going so far away, but again, providentially, I got my first clear scan the day before their flight out.
Still unable to drive, my friends, old and new, have been a lifeline and a year on are still there for me. I feel so lucky and so blessed. I have been provided for in every way: the best treatments, the skill of the doctors, information and support appearing from all sorts of sources, and I daily give thanks to God for that. 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.
To spread the message of hope, I started writing Bob the Blob’s Blog – My life with (and without) a brain tumour called Bob. It helps to explain my ongoing spoonerisms, tells of my escapades through treatments and my developing thoughts and understanding of what Bob has taught me.
I am doing my best to raise awareness and put right the fact that brain tumour research is massively underfunded, despite it being the biggest cancer killer of the under 40s. In March this year and exactly a year since my surgery, along with nine others in Team Bobstacle, I took part in the Chiltern Warrior, a 5k obstacle course with scramble nets, rope swings, tunnels, ditches and mud pits. Funds went to Brain “Tuna” Research. To continue fighting for this cause, I plan to live long and prosper (rope swings permitting) and be able to run, climb, scramble, wallow and laugh my way through life for many years to come!