The latest Cystoureteroscopy and precursor CT Scan with contrast have shown clear and paved the way for the next batch of BCG once they take this damn stent out. Yes, I’m lucky to be going on, to still have a pretty good quality of life, a reasonably good one in fact, but at times I can’t help wondering how much longer this has to go on.
Not a great one for using the words many find helpful, such as Journey or battle, I tend to see it as just bad luck. Ok there are times I think it may be punishment for some previous life full of sin, because I’ve been fairly good in this one. Not perfect I’ll admit . Perhaps too many microwave meals in my periods of singledom, although I don’t think smoking from the age of fourteen has helped. Is it weird that in my mind I can still taste that first Consulate huddled with my compatriots at the back of the top deck of the school bus? Gosh, I thought I was so cool. Not so much now though.
Way back in 2003, after convincing my GP something was seriously wrong, never an easy task, I was sent for my first ever Cystoscopy. I watched the event on a large TV screen and as the camera did its thing there was suddenly this “thing”. As I turned my head muttering “Er, I don’t think that should be there”, a chest appeared bearing the badge with the word McMillan emblazoned upon it. Even I knew what that meant. Whilst the TURBT sorted that out, a redundancy and soon to follow Divorce didn’t actually bolster my spirits. But hey, you pick yourself up, dust yourself off and crack on.
Ten years of initial BCG treatment, checks and Cystoscopies at widening intervals across Trusts (jobs don’t half muck up your life), and I was given the all clear in March 2013. Phew thought I.
Wrong !!!
The Bowel movements started taking on a mind of their own, and after being field tested and medicated for various things in September 2013, after a Colonoscopy, I had developed unfriendly Polyps and both ends of my Colon. January 2014 I began with a lovely course of Intensive Radiotherapy, swiftly followed by a Right Hemicolectomy and Anterior resection with covering Ileostomy and a subsequent course of Chemotherapy. Luckily the Ileostomy was able to be reversed in May 2015, although the readjustment of bowel movements, to some kind of normality, took a little longer than hoped, but I won’t get into those details.
I’d rather hoped that that is where the tale would end, but no, September 2018 it would appear my old friend was back in the bladder and both kidneys. So, Jan 2019 TURBT to the bladder, laser to one kidney and they took the other as payment for the operation. Actually, it was U.S. and needed to leave. Also developed from that Nephrectomy Epididymo-orchitus which came as a bit of a surprise I have to say.
Not to be left out the Colon decided to re-join the party in June of that same year and by the September a Sub-total Colectomy and permanent end Ileostomy put paid to that.
See what I mean about bad luck.
The hardest bit I find is the talking. I didn’t tell anyone in my family, or indeed friends, the first time, but a carelessly left out letter a little down the line was pounced on by a family member and all hell broke loose. Now I’m guilted into revealing all (well nearly), and life becomes an endless round of questioning about my feelings, my health, my appointments, my results etc., etc. and it is driving me nuts. Seriously, can you not all form some sort of round Robin or something!
I know along the way colleagues and friends distanced themselves, not to put pressure on me apparently, but more likely they thought they’d become contaminated by association or have to waste a rainy afternoon at some dire looking crematorium saying nice things about me , that they didn’t mean or certainly didn’t occur to the buggers to tell me whilst I was around. But that’s just life!
If anything, the thing I detest the most about this whole business is the unenviable task of keeping not just yourself but everyone around you upbeat. Yes, I know they believe they are helping; they want to help, they feel a need to be seen to be helping. But this thing, this bad luck, it’s mine. You don’t have to share. Get on with your lives. That’s all I want to do, to get on with what's left of mine. Who knows it may be eons yet. Don’t make me feel like a burden, please.
I can’t do some of the things I could but I can still do many, and some new things too! Okay, the dancing, fair enough, probably only me that thinks I can do that. But I really am ok. I love watching my Grand-daughter grow up, I love watching my Son become a far better Father than I ever was, (although please quit the helicopter parenting stuff), it really doesn’t help.
All I’m saying is let me come to you if I’m worried, anxious or stressed. Let me start the conversation, I know you care. I know some of you might even like me. If you need a reason why? It gives me the space not to think about it!
Most importantly it stops me feeling like a Burden.
Stop worrying about what I can and can’t eat. I know, and I’ll eat what I can. Remember I have an advantage over you. I have my own mini portaloo.
98% of the time I’m fine, occasionally I have worries , well minor anxieties really, not death, that will happen one day anyway. Probably not from this. I’m an old man, I’ll probably get taken out by a bus as I step out into road, too busy looking at pretty girls going by. Or I could be modern and get mowed down for being a Smombie ( Smartphone Zombie).
I go to the Gym but would also like to Swim, and although people say it’s safe, apart from the staring, I have these mini nightmares of some spotty young oik with pretensions of being a swim champion, calling himself LIFEguard, shouting, everyone out, that man is leaking poo !!
As to the bigger things, I worry about turning my son’s life into part-time Carer for me or upon my demise his Grandmother, a task that is currently mine. I didn’t feed and clothe him for that, but to live his life to the full. I feel guilty enough that I seem to be a very likely candidate for Lynch Syndrome ,more damn appointments. Not quite as gruesome as it sounds, but nevertheless!!
The final stuff is planned, the will written, even down to the bargain basement cremation. I would have donated myself to science but there is not a lot left. More weight in the metal (another sorry tale of woe) than the bone, partial vision in one eye, a small tumour behind the other, and the ears are not as good as they once were. What?
I know along this overly long and winding seventeen year road, wives and lovers who didn’t see a carer role in their future, fair weather friends and colleagues have drifted into the fog of blissful ignorance and I’m ok with that. It only takes half an hour to write Christmas cards now. A blessing in disguise. It’s those that are left, those that stayed, those that felt a need to stay. I am grateful for each and everyone one of you. I’ve spoken to you to all and love you all I just want you to know, it’s not you, it’s me.
Help me, by not talking about it, or by looking at me with doe eyes, or indeed researching weird and wonderful alternative meds and therapies. My buddies Nat and Mac are sorting that.
I do appreciate how with the NHS and McMillan’s help, I have been exceedingly fortunate, and far too many have it far worse than I. So why this little ditty, well I’ve been told it’s cathartic to be put something down in writing and unfortunately this is the best I can come up with.
So if any of the above diatribe resonates, think I’m being harsh, or indeed have a log cabin deep in the woods with no Wi-fi or landline to rent out long-term, add a comment.
