Happy New Year one and all!
As most of you hopefully, already know, 2019 was somewhat of a shocker for me:) Long story short… On the 16th July last Summer, while attempting to sail from Falmouth to The Azores, and while we were still 100 nautical miles off the Galician coast I suffered, completely out of the blue, a major brain seizure. When that first scare was followed by another seizure 12 hours later I was rushed to hospital in Spain where, first a CT then an MRI scan both confirmed that I had a ‘satsuma sized’ tumour in the right frontal cortex of my brain.
Three weeks later, on August the 5th, I was lucky to be operated on at the brilliant Southampton General Hospital where they removed as much of the tumour as was safely possible. Everyone seemed happy with how the operation went and I felt very lucky to be able to make a quick recovery. For now, I can still do most of the things that I’ve always loved to do. My lungs are full of fresh air and I’m happy. I feel like the same old Tom and suddenly that feels great.
However, the tumour biopsy confirmed what was pretty much worse case scenario. It was a high grade (4) Glioblastoma Multiforme (GBM)’. Positivity is thin on the ground when it comes to this type of cancer. The average life expectancy for people with my diagnosis is 12 - 15 months. With the mean prognosis (survival time) being 14 months. Add to that the seemingly terrifying statistic that only 5% of people with a grade 4 GBM survive for 5 years and it all starts to feel pretty bleak.
This whole escapade has served as a shocking and acute reminder of how lucky I was to be alive and young and, relatively, fit & able:) To some extent I still am… and I’m fighting to get as healthy and strong and fit as possible as I steel myself for the battle I know is yet to come.
So far I’ve completed a 6 week course of combined chemo and radiotherapy which finished at the beginning of November and I’ve managed to hang onto a little bit of this thick, strong, auburn hair right on top of my head… which is great! Buoyed by this follicular victory I’m now on the second of a 6 month ‘Temozolomide’ chemotherapy treatment block. However, when that’s complete at the end of May, I pretty much fall off a cliff in terms of treatment options. There’s nothing else available on the NHS apart from lots of fantastic ‘palliative’ care options, I’m sure. The problem is, I’m also sure that I’m not yet ready to die ‘as comfortable a death as possible’!
The plan now is to continue trying to live as well as possible for as long as possible and therefore we feel like we’ve nothing really to loose in exploring every available avenue for treatment. Everything we’ve read and all the advice we’ve been given points to Immunotherapy, specifically Dendritic Cell Therapy as the potential, exciting new front in brain cancer treatment. There is clinic we’ve been recommended in Duderstadt in the middle of Germany https://www.immune-therapy.net/
and I would love the opportunity to go there, talk to the doctors and see if they might be able to offer any more hope. BUT… and it’s a BIG but…. It’s really why I’m here, feeling intensely awkward writing this and asking this of you. The treatment is prohibitively expensive and sadly its money that we simply don’t have.
With so many unknowns still to come accurate financial predictions are tough, so in the interests of full disclosure… Any money raised will be used to cover the costs of any treatment not currently available on the NHS. In the short term this will predominantly be the Dendritic Cell Immunotherapy treatment in Germany but we’re always open to new information and advice and we’ve all our ears to the ground and fingers crossed for new developments! There will also be additional costs in terms of travel and accommodation which we will, of course, minimise! Annoyingly, I’ve been banned from driving indefinitely so will need a chaperone to accompany me each time… If anyone fancies a light hearted German jaunt in the best company, I’m your man! Also, if anyone has any friends in either Hanover or Leipzig (where we’ll have to fly each time) that would be AMAZING!!! Any money that’s left over I’d like to donate to the fantastic Tessa Jowell Brain Cancer Mission > https://www.tessajowellbraincancermission.org/
As we get into the swing of this defining decade I really do feel that the horizon is ablaze with hope, adventure and possibility and I really do believe that this Immunotherapy clinic in Germany offers the best chance to live as long and happy a life as is possible! Luckily we can pay per treatment’ so any amount will enable us to at least set out on this journey and we’ll all see how far we can go together:) Strength in numbers and all that!?
For my part, I can promise you all that I’m waging war on this thing inside my head with everything I have. I’m throwing all of myself into this journey of healing and hopeful recovery and to that end I’m working towards becoming as physically and mentally fit & able as I’ve ever been in the hope that I can continue to thrive and to stay alive for as long as possible. There’s still so much to do!!!! I needed some clear, defined goals to aim for and so I’ve set myself some ambitious physical targets for this coming Summer, starting with the Pembrokeshire Coast Path Marathon on the 25th April! I’m not sure if that makes any difference to you but I definitely feel more comfortable asking for support in terms of sponsorship, not charity.
Everything, so far, has gone as well as it possibly could have gone and hopefully, with your support, I’m going to continue this streak and endeavour to try and make the most of every moment, as we all, always should:)
Any donation, how ever small will hopefully enable me to live well with cancer, and not just die from it:) Hopefully I’ll also have a chance to see you all and thank you all in person but I’d like to write in the meantime so please do send me your address XXX
Finally, THANK YOU. From the very bottom of my heart, my mum’s heart, and the hearts of my two brothers & sister!!!
Tom X X X