16th May 2017 was like any other day until about 4:30pm. I was sitting at my desk at work and needed to check something – so I called a colleague over and tried to say “The home form” – but the wrong words came out – “dog tree” … no, “wood brush”…. I knew exactly what I was trying to say and could even write it down correctly. My colleague instantly recognised the symptoms of a stroke and within half an hour I was on my way to hospital by ambulance.
By the time I arrived my speech was back to normal and later that evening I was discharged having been told I had had a transient ischaemic attack (TIA). However, the next day my speech became distorted again. I was admitted to my local hospital and given an urgent CT scan – at which point I was told there was an area of damage on my brain, apparently from a stroke, and transferred to the regional stroke centre. I was put on drugs to lower my blood pressure and kept in hospital for tests.
I was aware that I had been under a lot of stress with a reorganisation at work and that I had been comfort eating since my son had left for University and had put on a lot of weight. However, I swam and walked regularly and considered myself fitter than most so the stroke came as a bolt out of the blue. I was angry with myself for not looking after my health and I made some major decisions – to reduce my working hours, spend more time with my family and to eat properly – and was expecting to have a couple of weeks off work. Then, following a MRI scan, the bombshell dropped. “I am sorry, you have not had a stroke. You have a brain tumour.” Less than a month later, following surgery, I was diagnosed with glioblastoma multiforme (the most aggressive form of primary brain tumour). The prognosis was very poor; the tumour would almost inevitably return but aggressive treatment would delay this. I had 6 weeks of daily radiotherapy with low dose chemotherapy and am currently having monthly high dose chemotherapy.
Having finished the radiotherapy, I felt totally powerless. I had nothing to do but to wait to see if the chemotherapy worked, knowing that the success rate for my type of tumour was low. I spent far too much time on the internet looking for hope and for someone to tell me the stats were wrong – until I found out that the ketogenic diet was subject to a clinical trial at a local hospital, following a good deal of anecdotal evidence of it working in individual cases. I was interested for several reasons. I was already trying to improve my diet and in particular cut out carbohydrates and was losing weight and feeling better for it. I also wanted to use my diet to fight cancer, but with so much conflicting advice on what to eat and information about miracle cures involving buying expensive berries I didn’t know how to help myself; how vital was it to eat raw tomatoes every day when I didn’t like them? I’d also heard about the ketogenic diet for epilepsy and knew it had transformed lives where medication couldn’t; the parallels with my own situation made me determined I would give it a try. I expected opposition from my GP and oncologist but my GP, a cancer survivor himself, said “In your situation I would go for it” and has agreed to prescribe testing strips and lancets and my oncologist has been supportive and positive. The clinical trial is only for patients from one hospital but Sue Wood, a dietician from Matthew’s friends, agreed to work with me to follow the diet and to monitor my progress.
Ten weeks on, it’s still early days but I am doing well with no sign of any new symptoms. I have recovered quickly after each bout of chemotherapy and have plenty of energy. My weight is still drifting downwards which I am delighted about although I am aware that I mustn’t become underweight – no risk of that for a while though! I have enjoyed following the recipes and working out what I can eat. Especially when I am on chemo and don’t feel like eating, having a prescription to follow helps me to eat regularly. I don’t miss sweet or starchy food and I certainly don’t miss feeling bloated and sluggish! It’s difficult if I am eating with friends; they want to find things I can eat but for me the most important thing is to enjoy their company and to eat what’s right for me. It’s early days for me; I don’t know yet how the keto diet will help my condition but it’s exciting to be part of research into a way forward for people with brain tumours.
To be continued…..