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.
Sarah spent her 30th birthday in hospital after complications during surgery to remove her brain tumour. Left with weakness down one side of her body, Sarah has undergone radiotherapy and is taking chemotherapy. With her tumour now deemed inoperable and with an unsure prognosis, Sarah and Matt brought forward their wedding, cancelling plans to get wed abroad with family and friends and taking themselves off to say their vows as “they just wanted to be married.”
“I am proud of my baldness and I think it is a shame that women going through the same thing feel they have to conform and cover their hair loss. I just wish people would do what they felt most comfortable with without having to worry about what others think. I am a proud baldy and saving £50 a month on hairstyling and products. More than anything else, my diagnosis means I have gained a real perspective on life – what matters and what really doesn’t! I have changed in that sense. I know how much I am truly loved, and have been able to tell others how I really feel. I am proud of my own strength during this process, and feel proud of everything I have ‘got through’ so far – surgery, chemo/radio, learning to walk again. All whilst wearing my red lippy which always gives me a boost. I have been just as happy during the last six months as before. There have been bad days of course and things are different, sometimes harder, but I have never been unhappy and there is always something to be positive about.”
Sarah tells her story:
Looking back on our wedding photos I wish I hadn't bothered with the blonde wig which I had chosen to hide my bald head. My hair had only recently fallen out as a result of my treatment and I suppose I felt I ought to "conform."
My whole outfit was different to what I imagined I would wear as a bride - my silver shoes had no heel and were carefully selected to accommodate the support I have to wear on my ankle and foot and then there was the crutch which I relied on to walk around. Despite it being different to what I thought I would wear as a bride, I loved my white trouser suit and grey sequinned top and wouldn’t change it for the world.
I have been with Matt since I was 18 and, over the last six months, he has been there for me every step of the way. We had been planning to get married in the autumn. It was all figured out; we would go to Spain and celebrate our wedding in the sun with the whole family. My brain tumour diagnosis had affected our lives in many ways, not least that it prompted our decision to bring our wedding forward. So, sporting my new wig which I had chosen from a limited selection at the hospital, we took ourselves off to the register office and made our vows. My diagnosis and treatment had made Matt and I realise that what we both really wanted was to be married to each other; it wasn't about the party. As my treatment began to affect me, I realised that perhaps all the organisation involved in getting married abroad was going to be too much.
Like the big tonic-clonic seizure which struck me down after a day at the races, my brain tumour diagnosis hit me – and Matt - like a bolt out of the blue. It was August 2016 and we had been enjoying the horseracing in York when I was taken ill at our hotel. Matt called an ambulance and I was taken to York General Hospital where the seizure was put down as a one-off episode, possibly brought on by drinking and late nights. Back home, I saw my GP and was referred to a neurologist. At the time I accepted everything I had been told and had no reason to think there could be something more sinister going on.
It was September by the time I was referred for a precautionary MRI at Salford Royal and only when I had a phone call at work a few days later asking me to go in and to take someone with me did I feel slightly uneasy. As ever, Matt was positive and reassuring and we talked ourselves into thinking this was standard practice after a scan and there was nothing to worry about.
Sadly, this was far from the truth. We were told the scan had found a "lesion" in the frontal lobe of my brain. It was most likely to be low grade and I was put on anti-seizure medication and discharged while a multi-disciplinary team discussed what should happen next. The waiting began, followed by more scans. When I next saw my neurosurgeon in November and, following discussions with Matt, I was to undergo surgery with the aim of removing 95 per cent of the tumour.
The operation, a craniotomy during which I would be mostly awake as this was the best way for the surgeons to determine how much tissue could be taken away without causing lasting damage, was scheduled to last around six hours. In actual fact, I was on the table for nearly double that and conscious for most of the time. I had numerous seizures while I was in surgery, it was frightening but the team said I coped really well. I remember feeling that it was deeply unpleasant; my head was clamped to the table and I was unable to move it at all.
I think the worst part of the surgery was when they drilled into my head to make a second opening, I was fully awake and the noise was incredibly loud. At one point, I asked the neuropsychologist if I could hold her hand for some comfort. I just wanted to get up from the table and get out of there.
Once I was in recovery, the doctors had the hard job of telling me that, despite their best attempts, they had been unable to remove the tumour. As I came round I realised that I had very restricted movement in my left-hand side. I was unable to control my arm or feel my leg on that side. The operation had taken place on December 16, six days before my 30th birthday and, although I was allowed home for a few hours over Christmas, I wasn't discharged until January 6. The holiday period meant there were delays in getting the results of a biopsy. When they did come, the results weren't terrible but they were bad enough and made for a difficult meeting; I had a grade two diffuse astrocytoma with biomarkers indicating it was unlikely to respond well to treatment.
My oncologist was very matter of fact and I was grateful for that. It was quite clear this was bad news. As yet I haven’t been given a prognosis and I am left wanting to know the possible best and worst case scenarios. Things will depend on how I respond to treatment and the next 12 months will be critical. The statistics are stark but brain tumours vary and every individual is different. I think it would be good to have some idea of how long I’ve got though, even if it was just a ball park figure, as if I had two-and-a-half years I would lead my life differently to if it were ten.
After my diagnosis and before the operation, Matt and I had continued to live our lives as normal. The tumour had little or no impact on my life and there were no more seizures. In the six months since, things have completely changed. At first, I relied on a wheel chair and then a Zimmer frame, after that I got by with a crutch – there it is in our wedding photos – and, now, I have a variety of walking sticks which I “style up”! I am left with weakness on my left side, I have a dropped foot which has to be corrected with a permanent support. I am having physiotherapy twice a week and my hope is that my mobility will return, even if it is gradual.
My driving licence was revoked after my seizure and, now of course, it would have been more value to me than ever: I am reliant on others to get me around as I can’t walk very far and running is out of the question.
My tumour is now deemed inoperable as any further surgery would leave me permanently paralysed. I am having the same treatment pathway as someone with a grade four glioblastoma multiforme (GBM), which is a very aggressive brain tumour. I started radiotherapy and chemotherapy in February and my chemo will continue until September and possibly longer and ramped up to a higher dose. Seizures continue to be difficult for me and, despite changes in medication, we are yet to get them under control.
I had just lost my hair when we got married on March 4 – hence the wig - but now I wish I hadn’t worn it. I am proud of my baldness and I think it is a shame that women going through the same thing feel they have to conform and cover their hair loss. Matt prefers me without a wig and being bald is very easy to manage! I think patients wear wigs and “cancer scarves” because they fear the reaction they may get from those who feel it is socially unacceptable for a women to have a bald head. I just wish people would do what they felt most comfortable with without having to worry about what others think. I am a proud baldy and saving £50 a month on hairstyling and products.
I do understand that many women feel their identity is closely linked to their hair but I was able to detach myself easily, it’s just that I don’t look like that anymore. I certainly don’t recoil in horror when I see myself in the mirror.
My most recent scan showed no further growth in my tumour and when my neuro-oncologist tells me it is good news, I am going to take it as good news. I am not at work at the moment but everyone there has been great – even doing fundraising for Brain Tumour Research and taking part in Wear A Hat Day in my absence. I try to leave the house each day, even it if is just for a few minutes.
Although the operation has changed my life I do not regret it. I put my trust in some very skilled people and their view was that surgery was the right option. There is no benefit in being bitter or negative about what happened because at the end of the day the tests were done and all the information available indicated removal of the tumour was possible.
I am not the type of person to sit down and feel bad about it and I will continue to keep chipping away in order to improve things. The way I see it, I can stop and feel bad about it or I can get on with things.
More than anything else, my diagnosis means I have gained a real perspective on life – what matters and what really doesn’t! I have changed in that sense. I know how much I am truly loved, and have been able to tell others how I really feel.
I am proud of my own strength during this process, and feel proud of everything I have “got through” so far – surgery, chemo/radio, learning to walk again. All whilst wearing my red lippy which always gives me a boost. I have been just as happy during the last six months as before. There have been bad days of course and things are different, sometimes harder, but I have never been unhappy and there is always something to be positive about.
Having time off work during treatment has allowed me to explore other opportunities such as my blog www.zimmazimmathreecoursewinner.com where I am documenting my story and keeping people updated on the important stuff such as what I am wearing! I have also really enjoyed having time to indulge my love of creating pieces of abstract art, working mostly in acrylics.
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.