Right-o update time I guess.
Sorry sounds extra ominous... it's more because I'm writing this ad-lib and realise it's been a few months in which time a HUGE amount's happened.
Firstly, I'd wanted nothing more than to post a fortnightly update on the fundraising page so nobody would be left wondering about events, treatment, progress etc.. however it dawned on me at the end of April that I just had to assume the worst about how low the DWP et al might stoop to dismiss my benefits claims and investigate me for whatever reason they could find.
So, yeah, I had to go almost completely silent online. Only updating people on instagram with riding photos, hospital photos etc. I've had to change my Strava profile name for whatever good it might have done (it definitely confused a few people).
Not really sure which order to describe what I've had done to me, what I've got up to, how I've felt for the last 3 months, so it'll probably come out massively disordered but here goes.
As of the last post and a fair bit down to all the supporters who came out of the woodwork, I set myself a daft challenge - other than the week I had surgery, I rode all the way through chemo and subsequently all through Radiotherapy (try as I might, the effects of it fought back and have just caught up to me in the last few days).
I knew I only had until about now (when the radio fatigue and throat pain/dryness floored me) to get my fitness as good as physically possible pre-stem cell transplant. I aimed for 3,000km and have somehow cranked it up to 5,030 in exactly 3 months. I actually managed to average 97bpm riding back from radiotherapy yesterday and realised I'd finally made it, done all I can, all I need to do.
Feeling very good about how I'll likely deal with the transplant now. The week of ultra chemo is savage, strains the heart, lungs, brain, digestive system, mind... the works. If I'm still physically where I am now, then I should be good.
Anyway, a large part of the silly distance was to show everyone who's supported me that I wasn't lying down and taking this. I actually celebrated the end of chemo with an 800km week just to show "it" who's boss ;) The donation money has bought a LOT of essential coffees and gels, not to mention the brand new pair of 4000's I've just had to replace again. I basically wouldn't have been able to get myself in shape without the money for food and bike maintenance.
So... what next.. DWP still trying to fuck me over, financially I'm just about juggling it ok. Housework, given up on for now - it just doesn't happen. Cycling as of today - paused other than riding to and from hospital..
My sister's going to be my cell donor, so on top of going through a horrible break-up, is on a horribly strict healthy diet for the next 3 weeks while I'm sure all she wants in donuts and gin. ..
Radiotherapy side-effects! Oh joy... 1st day, being fixed to a table by my face I had a full-blown panic attack. After that it was ok I guess. A very mild tingle during the 4 minutes of irradiation.. which went on in to the 2nd week. Happy days, I thought.. I'm one of the lucky ones who breezes through it.
Thursday/Friday last week my energy levels suddenly dived to the point I was actually in pain all over. Then the dry mouth kicked in (high chance of losing my saliva glands and thyroid to this dosage). Imagine the feeling in your mouth/throat after the longest heaviest smoky boozy night out you've ever had - THAT, all day, all night. Nothing fixes it.
Also, as of this evening my sense of taste is on leave. I can only taste sweet things, and can't detect salt at all.
Think that's all the grim news I've got for now, but I can finish with a bit of good news at least. I'm off to a spa town on the Bay of Arcachon near Bordeaux with my ex in 3 weeks for camping, seafood and walks in the pine forest. Not sure how I'm going to cope with the journey or cost, but as my possible last ever holiday I'm going to make the most of every minute!