by Doorstop » Fri Oct 16, 2020 8:28 am
**** POST 2 OF 2 ****
This time I got the bleeding stopped temporarily while they looked at everything else. They discovered the extreme exhaustion was being caused by my thyroid levels being absolutely in the toilet. The first kidney embolization going wrong had triggered something weird in my entire endocrine system to shut down production of Thyroid hormones, cortisol and testosterone. Two days after having started hormone replacement therapies of various different sorts, I was beginning to feel almost human again (well, as human as a big man-ape like me gets, I suppose ). This sudden recovery in feelings of wellness were entirely tempered, however, by the fact I was, once again, filling my catheter bag with deep, dark red blood - so much, in fact, that I needed two transfusions to get my cloodcount up to levels considered safe.
So, my Medicos took the terrifying (for me) decision to repeat the embolization surgery. Different surgeon, different approach, I was assured, and while every bit as effective, apparently much less likely to cause whatever it was that caused such serious problems after the previous surgery.
After much soul-searching and digging deep into my reserves of what was left of my courage and will-power, the operation went ahead. This time it seemed, from the outset, that things went a lot better, and so it has continued with very little bleeding from then until now *fingers crossed and touch wood).
Unfortunately, it was discovered that a lot of my symptoms that brought me into hospital were actually violent reactions to my anti-cancer treatment started a few months earlier.
I wasn't on standard chemo, I was on one of the newer cancer busters called immunotherapy, whereupon you get small infusions (less than an hour at a time and one every two weeks|) that don't actually attack the cancer itself, but gradually 'reprogram' your immune system to use increasing amounts of its resources to attack the cancer in your body. A major side effect of this, however, is that it leaves your body open to many more infections than it usually would, and if you do contract anything, it has the opportunity to absolutely run riot, causing much more damage than it normally would.
So, for the past 4 or 5 months I've been dealing with an aggressive cancer left to grow with no treatment (CoVid has put a halt to 99% of cancer treatments, with most of us getting telephone or video consultations, followed up by scans if the doctor thinks one might be necessary, and the risk of not scanning to see what's been happening outweighs the risk of catching CoVid whilst getting said scan) and infection after infection, usually dealt with by giving me absolutely monstrous doses of prednisolone, a powerful steroid. Not ideal as every time I started a dose of the steroids, it meant my IpiNivo (immunotherapy) had to get kicked down the road until I'd had my steroid course and given it a chance to clear from my system. This never happened though, as the infections just kept on coming and, eventually, it was decided that I'd been off the treatment too long to restart and, anyway, it was causing too many problems.
As I said, CoVid has caused so many issues to we cancer patients that almost nothing was done, treatment wise, until very recently. No scans for 5 months then me mentioning I had some lower back pain led to me coming in for a CT scan. The scan showed the cancer had spread into my sacrum and lower spine and lymph nodes.
Plans were then set in action for me to start another newish anticancer treatment, PazoPanib, another targeted oral treatment that has the effect of preventing the cancer from creating routes of blood supply and killing off any it has made already.
Astonishingly, just as I started this new treatment, a matter of a few weeks ago, the bowel issues started again, along with the super-exhaustion that set alarm bells ringing that the past immunotherapy side effects were kicking back in (apparently they can hang about for years after stopping IpiNivo, just waiting to randomly appear and cause havoc) and I was rushed back into hospital, the new anti-canxer treatment stopped immediately, and the plans for again being treated with the huge steroid dose were being put in place. However, unusually for me after my IpiNivo, I started showing some minor signs of infection (one of the problems with immunotherapy is, although it makes it easier to catch infections, your body doesn't react as it should to said infections by developing a temperature, a fever, vomiting etc, so it's difficult to initially, or even later, see that an infection is the problem)
The Medicos investigated my minor signs of infection and it was discovered that my blood tests were showing massive infection counts, and not just from one bug, either.
Turns out I had three major gut infections running at the same time. One of them was from a bacteria everyone has in their gut from birth and our immune system basically just copes with it as a matter of course. Mine had run amok and the immune system had just left it be.
So, after a massive intravenous blastof three or four different antibiotics at the same time, things started slowly to improve.
But, (and it does seem like there's always a 'but', doesn't it?) there was a numbness appearing and rapidly increasing in my lower left leg and foot, accompanied by a weakness in that leg and a burgeoning pain that very quickly became absolutely unbearable. When I say unbearable, I mean un-fucking-bearable. Being the sort of bloke I am, and the jobs and sports I was really quite accomplished at as a younger man, I had hardened myself up considerably and have, without blowing my own trumpet, an exceptionally high pain threshold (finished shifts with broken bones, pneumonia, holding clean bar towels to my face after being glassed or stuffing a t#owel up my shirt when I got mildly stabbed breaking up a bar fight), but I don't mind telling you folks, this pain had me rolling about the bed, begging the nurses for pain relief, almost in tears and wishing for death to ease things for me. On a scale of 1 to 10 this pain was easily a 15.
My lower leg felt like someone had broken it then trapped it in a vice and we're gradually tightening and tightening it up. My toes felt like they were having electric shocks applied to them and someone was gleefully scorching the sole of my foot with a blowtorch. No amount of the morphine they were throwing at me, and I mean silly amounts, was making one iota of difference. The pain just kept rising, each day considerably worse than the previous.
A full spinal scan (took over an our in the machine, and when I came off the hard scanner bed, I found I couldn't use my foot at all. Toes wouldn't move and standing on the thing felt like jumping onto a sharp pebbled beach from a great height. Not pleasant to say the least)
All that discomfort turned out to be worth it in the end, however, as the spinal scan showed that the cancer in the base of my spine had grown and is pressing against the large nerve that controls my left leg and causing the paralysis, numbness and silly amounts of pain.
I had radiotherapy last week and, along with the hospice/hospital specialist pain teams changing most of my high doses of morphine (there's still quite a hefty dose left to deal with the pain from the bone cancer and the pain from the kidney cancer itself) to two drugs that aren't even designed as analgesics - gabapentin and clonazepam.
Absolute wonder drug stuff and now all that incredible pain is reduced by 70%. The pain is still severe, but it's at a level where my threshold can deal with it, and the pain team is still on the job to reduce it even further. It just has to be done slowly because the gabapentin has to go up quite slowly after some initial higher jumps in dosage, and the larger the dose, the slower the upward titration has to be for safety reasons.
So, at present, pretty much stuck at home, filling my time with telly, reading, tinkering with the computer and brightening up my verandah with some new plants etc. Some Boston Ivies, some variagated, other nice succulents and semi Hardy plants that need looking after ecery day, to make sure I get myself out in the sun, as much as it is on my balcony, and do something that takes my mind off things. I'm learning to fly about the hoose on my crutches and zimmer, mainly to get about the gaffe, obviously, but in the slim hope last weeks radiotherapy does some good and let's me get up and down the stairs and out and about again, CoVid allowing, of course. And, of course, there's the waiting game to see if I'm going back onto my new cancer treatment, the PazoPanib. I'm about to call my GP to see if I can get some rush bloods taken today, so that my emergency telephone appointment with the Beatson on Monday morning gets me back started. The PazoPanib shrinks the cancer in 30% of patients taking it, stops any further cancer growth in 30% and, the one I don't want to think about, has no effect in the remaining 30%.
I'm anxious to get started quickly because when I started it before getting rushed into hospital, it definitely was doing something. My kidney pain increased dramatically, and I could swear I felt changes in the shape/density of the tumour when I lay on my side and put pressure on the bastard.
Anyway, that's my considerably lengthy tale of mirth and woe as it stands, not so heavy on the mirth. Sorry for not being more regular in my updates along the cancer road, but, as you can imagine from what's written above, a lot of the time I just don't have it in me to write out a wee mini blog covering the ins and outs, and at other times things are just moving and changing too fast to even begin to start.
Any-hoo, I hope this post finds you guys in fine fettle and looking forward to Christmas on the horizon.
(PS: Sorry this post is split into two, but I had real issues posting it as one. |In fact it took many tries of cut and paste, adding a paragraph at a time, to prevent SQ database error message and preventing me from posting anything at all. Most frustrating )
I like him ... He says "Okie Dokie!"