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.
Husband and father Graham Wood was diagnosed with a brain tumour after coming off his motorbike on the way home from work. Having undergone radiotherapy and chemotherapy, he is living with an uncertain future and undergoes regular scans to see if his grade three tumour has changed.
“I woke up with two police officers standing at the foot of my bed only to learn they had already breathalysed me for suspected drink-driving after I crashed my motorbike. It seems ironic to think that a mundane event such as riding home from work would end in the life-changing moment of being diagnosed with an incurable brain tumour but that’s exactly what happened to me. Stranger still that the crash injuries were more painful than the neurosurgery I was to undergo several months later.”
Graham tells his story …
I woke up with two police officers standing at the foot of my bed only to learn they had already breathalysed me for suspected drink-driving after I crashed my motorbike.
It seems ironic to think that a mundane event such as riding home from work would end in the life-changing moment of being diagnosed with an incurable brain tumour but that’s exactly what happened to me. Stranger still that the crash injuries were more painful than the neurosurgery I was to undergo several months later.
While the motorcycle crash itself left me with injuries including a badly broken arm, the cause was far more damaging – I had experienced a seizure and blacked out whilst riding at 30mph and the cause was a previously undiagnosed brain tumour.
I was married with a young son Reuben. I ran my own business, a newsagents in St Leonards-on-Sea, East Sussex. I loved it, we had some great customers and although it was hard work, putting in 70 or 80 hours a week, it was where I wanted to be. In fact, I had started working in the shop as a 13-year-old paper boy then later worked part-time until, eventually, I bought the business.
At first, it wasn’t clear if the crash had caused the seizure or whether the seizure had caused the crash which had sent me hurtling into a stone wall in June 2014. I had a CT scan and then an MRI which revealed I had a grade two brain tumour which had probably been there for 10 to 15 years.
My wife Amber was with me as a neurosurgeon broke the news. I had somehow resigned myself to the fact that news was likely to be bad, I hadn’t talked about my fears with Amber so consequently she wasn’t so prepared and to see her so distraught was more upsetting than the news itself.
The medication I was taking for the motorbike injuries meant I wasn’t able to start treatment for the tumour straight away. A follow-up MRI in January 2015 showed no change in the tumour and, at that stage, I was optimistic it would be removed in surgery and things would be OK.
Things had been difficult with the business since the accident and I had to rely on people stepping in and taking over for me. With surgery imminent, I was on steroids to take down the swelling in my brain only for the operation to be cancelled not once but twice. We were living on a knife edge: relieved when the phone rang with a date for life-changing surgery and then annoyance and disappointment when it was cancelled as an emergency took priority.
Once I was finally in the hospital bed I was more anxious about yet another cancellation rather than the risks such as blindness, paralysis, or even death, which were outlined on the surgical consent form. The operation did take place, on 22nd May, and thankfully all went smoothly. We attended a follow-up appointment with my neurosurgeon a month or so later and I must admit I was pretty confident it would all be routine and it was the last time I would see him.
Sadly, that wasn’t the case and far from being the low-grade “not much to worry about” type of tumour, I had a grade three anaplastic astrocytoma which “Dr Google” later revealed had an average prognosis of two to three years from diagnosis to death. There is no other way to express how it feels to be told that other than it sucks and makes you feel sick to the pit of your stomach.
By far the worst part was looking at Reuben, who was just over a year old, and thinking that I wouldn’t be around to see him grow up or go to school and realised just how much I would miss out on my family’s lives.
I was fortunate to be eligible for a treatment regime clinical trial which involved radiotherapy with concurrent low-dose chemotherapy following by another course of chemo. For the first stage of the treatment and with the help of friends and family, I travelled to hospital every week-day for six weeks. After that I was prescribed Temozolomide which I took at home. As the cumulative effects of the treatment started to kick in I found that I was so tired, just completely exhausted all of the time. It was so bad that my quality of life was rubbish; I suffered from severe sickness and was reduced to lying around on the sofa leaving Amber to do everything, and I mean everything. I had become an invalid, I was depressed and felt useless and that I was missing out on all the fun stuff that a dad should be able to do. I was too tired to take my son to feed the ducks and unable to enjoy all those other things that parents do with their toddlers. I felt that I was missing out, Reuben was missing out and Amber was being over-burdened.
With an MRI showing my tumour was stable, it was agreed I should stop treatment, adopt a watch and wait approach in which I would be monitored and we would live our lives in 25 day cycles with all the concern and “scan-xiety” that a brain tumour diagnosis brings as you wait for your next scan.
Financially things are difficult. I can no longer drive – or ride my motorbike – and I have sold the shop. Amber is working as a florist and, with me out of work and relying on benefits, we are just about surviving. Our savings are being whittled away and we are reaching the point where I will have to go back to work although I am not sure what employer would take me on as I face such an uncertain future.
Amber and I got married on her birthday in May 2016 and had a wonderful honeymoon visiting Canada, Hawaii and New Zealand. I am aware that not many people are able to do that with a toddler in tow although I realise long haul holidays are probably a thing of the past. We are fortunate to have a lovely house in Westham and I dearly hope that Amber and Reuben will be able to remain in our family home
I am now three years post-diagnosis so have out-lived the average prognosis and although, in a way, that’s good news the worst part of all of this is the uncertainty and the fear that today could be the day that the tumour kicks in again. I am 33 and, while it is hard not knowing what the future will bring, I try to enjoy what we have now rather than dwelling too much on what might happen.
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 Graham’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via https://www.braintumourresearch.org/legacy
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