In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
A freelance writer and educational consultant, Collette stumbled at the airport and was taken to the doctor as soon as she arrived in France for a holiday. She was diagnosed with an aggressive glioblastoma multiforme (GBM) and underwent surgery and treatment before she could travel home to Devon where she formed a pact with her doctors that she would outlive her bleak prognosis. Together with her husband Reinhard, she is facing the future with positivity and a sense of humour.
“I usually speak my mind, and say it as it is, so I asked all the professionals to do the same for me. The resulting full and open communication between us has been superb, and has helped our planning and decision-making very much. In the ten months since our working relationship began, we’ve established a rapport and a bond that’s giving us all a great deal of pleasure. My oncologist and I have made a pact – between us, we’re going to beat the odds on this one, and skew the statistics significantly. He’s monitoring me closely, with an MRI every three months; and I’m being a good girl and doing as I’m advised. I’m feeling very well, and am doing very well. Long may it continue. I’m one very lucky woman.”
Collette tells her story:
In August 2016, I was travelling to join my husband, Reinhard, who had gone ahead of me to France, for our holiday. My sister took me to the airport in England, where I tripped up some steps, falling flat. Unknown to me, she rang Reinhard and ordered him to get me to a doctor PDQ, so I was met at Toulouse airport by an anxious husband, who announced we were going straight to the GP.
The doctor took one look at me and that was enough – the left side of my mouth had drooped, as though I was mid-stroke or having a brain haemorrhage, and he told us to go straight to the nearest hospital. Well, what a shock that was! I was 63 years old, and had never been admitted to a hospital, or had a health problem of any kind. But strangest of all, I had not experienced any symptoms whatsoever prior to this situation, and even at that point I was mystified, because I felt normal. I have always enjoyed robust health, and certainly didn’t feel the slightest bit unwell before this crisis.
Carcassonne hospital carried out a CT scan and discovered ‘something’ on my brain which needed to be examined at the neurology department in Toulouse. After several days waiting for a bed there, I was zoomed off in an ambulance, with the ‘blues and twos’ adding to the drama.
An MRI scan showed a large tumour which needed surgery immediately, and so began my journey with glioblastoma multiforme (GBM), as the diagnosis proved to be. I was fortunate to have a superb neurosurgeon do the operation. He told us he’d excised about 90% of the tumour, and then recommended the remaining part should be treated under the Stupp Protocol as soon as possible. That regime would start when I’d recovered from surgery, and when I could be slotted into the schedule in the radiotherapy department.
Recovering from surgery meant a week in the neurology ward, often with pretty severe pain in my skull, and most of the time feeling bewildered and very frightened. There were some light moments, though, such as when I was bottoms up, waiting for a jab. The nurse and I had a good laugh at the idea that I was giving Kim Kardashian something to worry about. Or the quiet moments in the dead of night when the pain became challenging, and Dominique would come in with a smile and a ‘bonbon rouge’ (morphine tablet to you and me!) which would quickly bring relief.
‘Glioblastoma’; ‘Stupp Protocol’, terms that I’d never heard of, so I did the worst possible thing: I logged onto Google. Oh dear, not one of my better ideas, particularly when I realised that, according to some articles from the USA, I was in the demographic group with the worst survival statistics, and pretty short average survival time into the bargain (16 months from diagnosis).
After about four weeks (it was by this time the end of September, 2016), I began my treatment which involved daily radiotherapy Monday to Friday; and daily doses of self-administered temozolomide tablets all week. The radiotherapy course meant Reinhard had to drive me to and from the oncology hospital in Toulouse every weekday, a round trip of 170 miles, which was so tiring!
On the first day of radiotherapy, I was elated because I felt that at last we were all being proactive in hammering the worm in my head. My elation didn’t last as long as the course, however (42 sessions), and by the last session I was more than ready for the end. I said to the radiotherapist that, for a patient having “The Treatment”, the two best days of the course are the day we start, and the day we finish. He chuckled and agreed!
The chemotherapy didn’t agree with me, causing nausea and constipation. And, of course, I soon began to lose hair. I was never completely bald, however, as the hair loss was in a track around my head, on exactly the course that the radiotherapy machine took. So I had a ‘tonsure in reverse’, with the hair on the crown and the base of my scalp intact, and a band of bare skin, about two inches wide like a halo! Once home, I had quite a lot of fun, since my funky hairstyle was exactly like that of many young lads in our local town. They’d probably paid Silly Billy money to look like that, and there I was, bang on trend, thanks to GBM! (If the truth be told, they probably thought I was a daft old bat trying to look cool by having my hair done like that. Who’d blame them?)
During those weeks, I experienced some of the most profound and distressing emotions I’d ever had. There was deep sadness at the thought of leaving my beloved husband alone and bereaved, and also my wider family (we don’t have children). There was raw terror at what was happening to me physically, both internally and externally. I’d never been in a hospital so it was all new and very, very frightening. There was fear of causing myself further complications because I could eat very little, and not keep down anything I did manage to swallow. There was anger that this should happen to me: why me? I cried a great deal and spent long hours brooding. And sleep, or lack of it, was a major issue.
This routine lasted for two and a half months, and we arrived at our home in England only at the end of November, 2016, by which time I was very ill from the treatment, severe neutropenia being the main difficulty. And I was so tired, weary to the marrow.
Then the pragmatic side of me kicked in. We were where we were, and I had to pull myself up and start making plans within that context. I decided I was blowed if I was going to be bested by this!
Within a couple of days of our homecoming, the good old NHS kicked in, as did our local hospice movement. I had appointments arranged with both my GP and my oncologist, and the specialist hospice nurse paid a home visit all within a week. It was very gratifying for me, and gave me the psychological boost I needed, when they all independently told me I was looking very well.
I found the reactions of friends and acquaintances fell into two categories. There was either the funereal demeanour and mawkish facial expression, while speaking in a low voice. Or there was the overdone, jolly, false laughter as I was hugged to the point of breathlessness. I could gauge which approach somebody would adopt by the way they asked, ‘How are you?’ If the emphasis was placed on the ‘are’ (How are you?), I knew I was in for the sepulchral treatment. If the ‘you’ was stressed (How are you?), I was in for the comedic banter. I refused to accommodate either, and just greeted people normally and then carried on with whatever I was doing. Christmas was on top of us, so I was pretty busy.
We decided to sell our house, and downsize into a bungalow. This has given me some real belly laughs. For example, the young surveyor who came asked me why we were selling, and I told him the truth, very briefly. Later, we were sharing a coffee and custard tarts (from a certain German supermarket), and I commented how yum yum delicious these particular ones are, so yummy “they’re to die for”. The poor lad almost choked on his elevenses, but we ended up laughing like drains. And the time a viewer commented how she and her husband had viewed loads of properties and just couldn’t find what they wanted. I said I understood completely as I’d been there myself - “you just lose the will to live, don’t you!”, and again we collapsed in a heap of laughter. There’s always the amusing side of any situation; we just have to dig a little to find it sometimes!
I usually speak my mind, and say it as it is, so I asked all the professionals to do the same for me. The resulting full and open communication between us has been superb, and has helped our planning and decision-making very much. In the ten months since our working relationship began, we’ve established a rapport and a bond that’s giving us all a great deal of pleasure.
My oncologist and I have made a pact – between us, we’re going to beat the odds on this one, and skew the statistics significantly. He’s monitoring me closely, with an MRI every three months; and I’m being a good girl and doing as I’m advised. I’m feeling very well, and am doing very well. Long may it continue. I’m one very lucky woman.
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
If you have been inspired by Collette’s story and would like to make a donation to Brain Tumour Research please go to https://www.braintumourresearch.org/donation/donate-now or leave a gift in your will via https://www.braintumourresearch.org/legacy
Together we will find a cure.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.