My story is pretty positive so far. Hope that is an encouragement for you!
I am a 44 year old married man with four children aged 5-16 and therefore had plenty of motivation to try whatever offered some hope in a grim situation.
2003-2007 Escalating symptoms
One evening, early in 2003, I was working at my computer. I tried to enter a simple word – “against” I think – but the computer spell check flagged an error. I tried again and again; it took several minutes and a cup of tea to get it right. Funny what tiredness can do, all those broken nights, but it wasn’t the only time.
Mid 2003 I was preaching a sermon (I am the pastor of a church). I looked down at my notes and the text was completely meaningless jumble of shapes. I staggered to a halt; a hymn and a cup of tea later I was able to carry on. Funny what stress can do, I thought. So did the doctors who explored, variously, stress, sleep deprivation, anxiety, as reasons for the ongoing intermittent episodes.
Then on Christmas Eve 2006 I passed out in the shower. The NHS creaked into action and six months later I had a MRI. I had another episode as I came out of the scanner, and waiting for the headache to subside I saw a note on the nurses report – “mass on the brain”.
2007 Diagnosis. Median life expectancy 8.4 years (after initially thinking it was a worse tumour with 2 year median survival)
Suddenly the NHS moved terrifyingly fast! Trip to Addenbrookes, biopsy one week later – diagnosis: oligodendroglia, left temporal lobe (sight, reading and comprehension), about the size of a golf ball, and inoperable. One piece of good news – it was grade 2, not grade 3, as originally thought.
Radiotherapy followed and then 5 years of relative health (I even got my driving licence back), but then in 2013 a sequence of cracking headaches and the gradual loss of vision on the right visual field, made it clear – the beast was back with grade 3 vengeance.
2013 Chemo could hold it back for a month; a year; possibly more. Surgery not advisable.
It seemed we were reaching the end of the road.
One piece of good news – out of the blue Addenbrookes rang to say they thought we should consider surgery. It had grown in such a way that it could now be operated on, but gloomily this would only be a debulking exercise, not a cure – “there are parts of the tumour I won’t even try to remove; it would cause more damage than its worth. It could make you more comfortable but comes with risks, not least the loss of up to 40% of your vision”. After significant agonising I decided to go ahead.
Meanwhile with six weeks to wait things were decidedly uncomfortable. After two weeks the promised temporary relief of the steroids was not being delivered. The nurses implied that steroids normally kick in after 2 or 3 days so they simply didn’t seem to be working. At this point my mother suggested trying the Ketogenic diet, and that this could be supported by the Astro Fund through Matthews Friends. This was worth a try I thought, too miserable at that point to mourn the loss of salt and vinegar crisps.
2014 You should enjoy many many months of good health.
The post chemo scan still showed some grey, dodgy-looking bits around the dark hole where the tumour had been. We hoped this would be contained.
2015 Nothing but a black hole on the scan.
And now here I am, over two years later; able to read and write (just a little slower than before, but improving), to see (just a little weaker in one side) episode-free (just the odd migraine) and with my most recent scan showing no tumour activity (just a hole where the de-bulking turned into a macroscopic resection). “It looks like a brain that has had a tumour” is how the oncologist put it.
So what difference might the diet have made? Well it might just be luck and surgical skill. But for what it’s worth my subjective assessment would be:
- That the diet is very likely to have eased the episodes and headaches immediately before the operation in 2013, when the steroids did not help and to keep things steady since
- That the diet just might have helped in the month before the operation to make the tumour more susceptible to removal without damaging healthy tissues.
- That the diet may well have contributed to the benefits of the chemotherapy I had following the surgery. It would make sense that stressed cells would be more susceptible – bearing in mind I already had helpful genetic markers.
- That the diet, overall, has contributed to my general well-being through this difficult time. My weight has been steady; my reflux indigestion, once common, is now rare; no problems with constipation and psychologically, on balance, it has helped to give a sense that there is something that can be done in this situation – although it can also be a constant gloomy reminder of what has happened to you. Cholesterol levels are not so good, but this was a problem before and I’ve probably eaten too much dairy.
Alongside the diet I have used a number of other alternatives and supplements. I still take circumin (turmeric), vitamin C and D, and munch my way through a lot of apricot seeds. And, being a Church minister, you will not be surprised to hear that I have benefitted from the prayers and support of hundreds, if not thousands, of people, which I believe have been answered – not least, in the remarkably good outcomes of treatment, but also in giving strength through the difficulties. I am of course very conscious that not all who see help from God find what they are looking for – but that has been my experience.
Keeping the diet has not been easy, especially for the first year; I have always been fairly rigorous but never to the point of weighing meal intake, and now I am on top of it I don’t measure blood levels like I did. I have missed the forbidden fruits, but not as much as I had expected; and on those occasions when I lapse (like Christmas) I have enjoyed them, but not as much as I had expected! The main burden has been on Suzanne, having to prepare multiple meals. The main difficulty comes with social occasions and works events – usually loaded with cakes – and days when I am working out and about and need to grab a quick lunch are difficult – thank goodness for Pret a Manger salad and M&S prawn cocktails. It is definitely not something to attempt if you have any inclination towards anorexia or similar as one can easily become obsessive about controlling your diet. Notwithstanding that, I would say that in my case it has played a positive role and just might have made a big difference, (my doctor shrugs, smiles and says “well doctors don’t know everything”). I am very grateful to the Astro Fund for financing and Matthew’s Friends for delivering professional support for the diet to go ahead. I continue to maintain it broadly in principle although do not attempt to achieve a fully ketogenic metabolism.