Final blog input
this may be, very likely, my last ever blog post, so bear with me! The last time I communicated about my cancer was done on Facebook, shared between a smaller number of people. I think the motivation for that was a little complicated; firstly, in-reality I was dealing with difficult things, but i was also used to an outcome that became used to 3 years of ultimately ‘as good as they get good results’; this being despite the hard part of the journey to get there. Secondly, I was on a very high dose of steroids, looking back it was sort of ‘fun’ in away, like being high and feeling really positive. I was communicating negative things, but from a positive state of mind!
I’m gonna include the last one those here as a point of reference, so please read as much or as little as you can bear! Once done, the next last blog section is my attempt as a ‘reality’ update of where I am next. All readers bear with me…
Sorry for the mass message. Just easier to do this than other ways. You’re on the list because you’ve been supportive, funny or cool over the last 3 years of my illness. Thank you.
Unfortunately I’ve had a shitty end to my already pretty shitty week. Earlier I started losing strength in my legs and was put into hospital. The did loads of tests and my MRI scan was brought forward a week. Stayed in a lung illness ward (only spare bed they had) and watched two people die which was really brutal stuff - lung cancer and COPD are horrible, my heart was bleeding for these poor people.
Anyway, I’ve now got 2 new tumours in my brain. One is a small one in the original 2014 resection place and another on the top of my head on the right hand side. It’s that one that is messing up my motor function. They put me onto super scary kick-ass steroids which now feels like I’m doing about 1g of speed everyday (sounds like the sort of thing someone might have enjoyed at about 20, not my bag at 45!) which sort of made my body a bit better but I’m now wobbling about with a walking rod looking like a bit of weirdo, like more than I do normal.
Ive got to have a detailed meeting to discuss next week but the initial reaction is that I should have surgery to remove at least the one on my motor cortex, and maybe the other one as well. They’ll then do some lab tests and decide what Chemo might be effective for supportive treatment. They might also use a new stereo tactic radiotherapy machine in the John Ratcliffe hospital in Oxford as well.
My oncologist also agreed I should take a look at additional treatments I might get through BUPA. I’ve always been covered by this because of work, but I never used it. I did this and there going to pay for all my new surgery and treatment so it will happen a lot faster than it would through the NHS. I’ve refused to use it up till now because I struggle that such benefit is fair if you don’t have the cover or the money, but as this could well be my last stand, I gave in and took the support.
The conversation with the oncologist was very deep as I discussed the possibility of palliative care rather than further treatment. If I die, then Nico and the kids will get some support and some level of security and won’t have to deal with this all the time. However, the hospital team feel strongly that I should accept the surgery as it will hopefully remove the current symptoms, and (maybe) buy me some extra time - also, due to the location of the tumour if I don’t get treatment it will be a drawn out death rather than a short one. It doesn’t feel as though that’s a brave choice for the kids. I’m going to meet Mr. Plaha (my awesome surgeon) on Monday next week and see what’s next - surgery may well be within the next couple of weeks or even sooner
It’s not a good news story unfortunately - I’m gonna die but they might be able to delay it for a while and hope that next time death will be quicker and easier for me and family to cope with.
I’m sorry to dump a whole load of crud on you, but if you’re on the list, you’re experienced enough to know that GBM cancer is what it is. Not looking for any response - just felt the need to get it out there before I go through whatever is next.
Big love to all of you
Blog update (This is the ‘real’ end, beautiful friend, the end…) #
Despite the dramatic ‘potentially the end’ of my life undertone, it’s certainly something to write but something quite different to exist through. Initially the surgery was a success, removed my tumours and while disabling me physically, had the possibility of physio that would restore some level of movement that would at least get me able to move around with my kids a little and restore some aspects of my life a bit. However, even in the time that i waiting to get from the cancer ward to the physio one, my health started to decline and during my first new Chemo cycle, another MRI was done revealed yet more tumours, literally just a couple of weeks after the last ones were removed. These ones are also not removable. The small improvement quickly started to decline so the question about my illness had a new full answer, you’re gonna die now, just how long. A lot of annoyance in me about kicked off in many things, one silly example of which was that I nearly finished a 3rd ‘the dread’ album that i was actually pleased with (sort of for the first time!)
Focus changed on getting me home quick so i could spend time with my kids. I got home which was lovely but started having seizures to an extent where it wasn’t manageable at home so had to be sent back to hospital again. A week of various type seizures, increased medication and a lot of being ‘asleep’ it seemed to be in control and i got send home again. So grateful to be back with the wife and kids again but within one day had another seizure which my wife then had to deal with. So, we now here, in the now and i do understand where many families must get you with this sort of shit. I’m dying but don’t know how that will take. My wife is now a carer rather than a wife. i am just so tired there is limit to what can do. I’m losing strength daily. The kids have to adjust to my decline and despite they are incredible kids they are only 7 & 8 years old. The only inevitable outcome is that I will die and the whole thing can finally finish but i can’t speed that up. But you know what? I love my life, my wife, my kids, my sisters, all my family in law, my nieces and nephews , my Mum, my Grandma, my friends, my work, music, art, the beauty of the world and the compassion in the hearts of those I respect and have taught me so much. I don’t want to die, but like everyone else, I will do. I’m respectful for everything I’ve experienced and learned from and thank all those who and taught me many lessons. I send you love, hope for success for every moment left of your life and time. Final thing I want to write, my wife Nico has helped me, supported me, put up with me and protected me to such an extent it is beyond my ability to articulate. I’ve been very lucky to meet and marry such a person and also have such incredible children. Much love to all of you.