Tom Shaw, from Stafford, began suffering from intense headaches in 2007. After seven visits to his doctors, he was diagnosed with a low-grade hemangioblastoma, and underwent surgery to remove it. During the operation, surgeons discovered the tumour had become more embedded in blood vessels than first thought. After the 13-hour surgery, Tom is now in a wheelchair and suffers from ataxia, a condition that affects muscle coordination, and causes difficulties with speech and vision.
Here is Tom’s story, in his own words…
As I write this now, I’m 41 and life is good. However, I am in a wheelchair, I have severe double vision, ataxia, speech difficulties, and a few physical issues. These were all caused by a brain tumour that was removed when I was 24.
I started noticing I was having head pains about four months before my diagnosis. I didn’t take action or try very hard to find a solution until it was almost too late. The signs weren’t obvious at first. For example, I was going to sleep with the fan on every night, but it was summer so I didn’t think much of it. I was experiencing shortness of breath but had recently started back at the gym after gaining weight so assumed that was why.
The signs then started to become more obvious. When I woke up, I would sit on the side of the bed and wait for the throbbing in my head to start, and then wait about a minute for it to stop. Stepping over the side of the bath into the shower each morning would set it off. I stopped using some machines at the gym because the pain in my head was too much.
The throbbing became more frequent and happened multiple times a day. I went on holiday and my head pain was so frequent and presented itself when looking up to catch a frisbee or getting into a cold pool. I finally admitted I had a problem and pursued a solution.
This was easier said than done.
It took seven doctors’ visits and collapsing at home and being found on the bedroom floor by my girlfriend before I got an MRI scan. Looking back now, the outcome seems obvious. But I wasn’t expecting it.
I still remember being told that they had “found something”.
I didn’t react. I heard the words, but it was almost like an out of body experience.
I didn’t know how to react, should I burst into tears? I thought of the times I’d seen a situation like this in a television drama and the person receiving the news usually had some sort of reaction. All I could think was that they must think I’m some sort of robot. I even contemplated reacting the way I thought they would have expected.
A few minutes later nobody could judge me for my lack of emotion. I sat in the back of an ambulance quietly sobbing to myself as the siren was alerting all traffic to get out of the way as I was transferred to Stafford Hospital from Cannock.
It took a few days until I saw the neurologist, but he allayed my fears. He explained I had a hemangioblastoma, that it wasn’t high-grade and it was slow growing.
For the first time I felt a glimmer of hope.
It was on the cerebellum which is at the back and bottom of the brain. It was in a preferable location away from the major clockwork.
This medical opinion was shared by two other neurologists, so the prognosis was quite good. The operation would be a few hours, and I would need some physiotherapy to regain the ability to walk. It was estimated I would need 12 weeks to make a full recovery.
Not long into the operation, however, the neurosurgeon gave my parents a new diagnosis. The tumour was far more severe than the MRI scans had shown.
It had managed to hide its severity until the neurosurgeon came face to face with it. It had become entangled with several hundred tiny blood vessels.
The big problem was that it was so distended with blood it was likely to burst at any point, almost certainly within the next forty-eight hours. Not operating would result in death, but operating only offered a chance of survival. Any of the blood vessels could be an essential supply to the brain stem. Every one he cut was likely to starve a part of the brain of oxygen, so he knew he was going to cause damage, but it was near-impossible to predict to what extent. It turned into a thirteen-hour operation. I spent a few weeks in intensive care with a mixture of hand squeeze capable responses and complete unconsciousness. I had a tracheostomy and was breathing through a ventilator.
I spent four months at the Queen Elizabeth Hospital Birmingham (QEHB), until it was recommended I try and get a spot at a neuro specialist rehab like The Haywood in Stoke. I spent the next eight months there.
I’m now in a wheelchair as I’m unable to walk unaided. I have the strength in my legs to stand holding onto something like a Zimmer frame but have absolutely no balance.
The operation has left me with ataxia which can be very frustrating. My right side is the weakest, most affected side. It’s difficult to pick up small objects with my right hand and my arm shakes when I do. I now use my left hand for most things. I am more accurate and my left arm tends to go where I intend it to. My writing is poor; legible, but poor. I haven’t mastered doing this with my left hand, so I use my right. The result is that of a five-year-old.
Since the operation, I have also struggled with double vision. As something came closer, one eye would begin to move inwards while the other looked straight ahead. Then the other would take over, flick inwards while the first eye moved back to centre. I needed several operations to try and correct it. My right eye is now misaligned, and I have to wear a frosted lens.
My voice has also been greatly affected. I was unable to talk for the first six months of my post-op existence, communicating via a letter board. I struggle with speech now; I try to be humorous but find that speech is largely down to expression, with emphasis put on certain words. I found that writing things down is a good outlet.
So, I wrote a book telling my story. A story I’ve struggled to tell. It’s called Brain Tumours, John Bonham and Fat Pigeons.
Hope is vital, as is acting on that hope. I have always had hope and always thought I had more to give, but acting upon it proved a stumbling block for a long time.
I had plenty of opportunities to identify what quite possibly was a non life-threatening brain tumour. My procrastination is the reason I’m in the situation I find myself now. The book is a cautionary tale for somebody who may be experiencing or might experience similar symptoms in the future.
Sort it now, it won’t go away.
It’s also to illustrate that there is light at the end of the tunnel. I feel very fortunate to be able to share my story, and maybe stop somebody making the same mistakes as me.
We know so little about the brain. Brain tumours kill more people under 40 than any other cancer, and so many people are affected directly or indirectly by this disease. This is why I am now supporting Brain Tumour Research as it calls for the government to follow through on its promise to invest 40 million into research into brain tumours.
I have also launched my own blog, www.wheelchairworries.com. I'm adding new posts regularly and plan to add posts about the accessibility of places I've visited and general advice I can give from my 17 years in a wheelchair. All fellow brain tumour survivors are welcome.
Tom Shaw
October 2024
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Tom’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure