The last thing I wanted to hear was that my PSA was on the rise, never mind that it was rising so quickly. Eight point bloody seven from four point four just six weeks earlier! Where did that come from? Chemo was a horrible experience, really horrible. They say you wouldn’t wish it on your worst enemy (well, actually, I would, I’m nasty like that). But it’s meant to kill off the cancer cells; it’s meant to cure your cancer, not stimulate it.
Yep, depression kicked in again. It seems like the hope I had for a long life on a maintenance regime might not happen after all. Then I tell Grim to bugger off, and I think on the alternative treatments. I know that there’s a hormone-by-tablet option instead of my current hormone-by-injection, and this was mentioned way back when, just after I’d completed the radiotherapy. One of the benefits of keeping a written diary/record of my treatment is that there are details to refer back to:
The Prostap that I’ve been on is an “agonist”. These injections work by blocking messages from a gland in the brain that tells the testicles to produce testosterone. They may switch me to an “anti-androgen”, which are usually tablets rather than a jab, and they stop testosterone from your testicles getting to the cancer cells instead.
Another alternative I suppose would be to have the prostate removed, but that worries me, as when they removed my anus, they took a lot of peripheral tissue with it to ensure there was no ‘leakage’ of the cancer cells. Given where the prostate is, I don’t know what potential damage to other vital bits of plumbing removing the prostate might cause if they had to take peripheral tissue with it. There’s a guy I know from walking football, who plays for another club, that I was comparing cancer notes with a few weeks ago, and he said he’d had his surgically removed. It didn’t seem to be doing his game any harm. Next time I see him, I’ll ask more questions.
There’s a further frustration that the PSA rise causes me. I read a lot about people being declared ‘cured’ of their cancers because their scans are showing ‘NED’ – No Evidence of Disease. All of my scans, and goodness knows I’ve had a few, have shown NED for ages. A few cracked ribs here and there for sure, but no cancer showing up. But a rising PSA level says that there is still cancer there, and no matter how many NED scans I have, it’s the simple old-fashioned blood tests that give the game away.
Anyway, it’s mid-April, and the hospital decide to write to me quite a lot. Three letters, one after the other. The first is for yet another Full Body Bone Scan at Nuclear Medicine on 7th June. The second is for a face-to-face Oncology Consultation on 14th July. And the third is to confirm that I am on the waiting list for my prolapsed stoma to be refashioned along with my increasingly uncomfortable hernia to be addressed sometime in the future. I’m sure there’ll be another letter along soon enough inviting me to yet another CT scan (right on cue, the evening of 13th June, the day before my big seven-oh). Oh, and then the NHS sends me a text message and follow-up email telling me I am one of the ‘people with a weakened immune system’, so I’m invited to have what turns out to be my fifth covid jab. No big deal, just a bit of an aching arm for the next few days.
Still, my head is getting warmer, if only the weather would do the same. We are now into late April, and Sparsely has moved on and been replaced to the point that I now have a decent covering of quite coarse and wavy hair, revealing itself in at least fifty shades of grey. I’ve never had wavy hair before, it’s always been dead straight, so I’m going to let it grow a bit longer because I want to see what it looks like. At the moment it’s just a bit unruly.
One thing that seems unusual is that the sweats are coming back. Nothing diluvial like they were before, but enough to give me chills as damp clothes in cool weather sends me the shivers. I wake in the night for a pee and find that my tee-shirt is damp, and by the time I get back into bed the shirt has gone cold and clammy, and I really don’t like that. Playing footy I get the occasional sweaty moment; sitting in the car I get the occasional sweaty moment; watching tv I get… and so on and so forth. The cyproterone doesn’t seem to be quite as controlling of it as it used to be. Or else the hormones have in some way changed their activity.
Meanwhile, the graph of my projected fitness level post-chemo is behind me now. I’m definitely back to where I started, at my notional/nominal “10”. That’s not an Olympic-sized “10” of course, but a half decent Stewie ten, not bad for an old bloke knocking on for seventy. I really am delighted to be still playing football at this stage of my life, all things considered. Aches and pains? Yes, of course there are. But pain is one of those things that reminds you you’re still alive, so that’s OK.
And speaking of pain… we have a blockage. It was Friday the 12th May that I changed a very full bag first thing in the morning. I went to footy, no problem. In the evening I ate a nice meal, no problem. Went to bed with nothing except a bit of wind in the bag left over from the day… which was the same in the morning. Saturday was spent mostly gardening, but a pain in my abdomen began to make itself known. Still just wind in the bag. Nothing to eat all day except a bit of kefir drink. I had absolutely no appetite at all.
Sleep was very uncomfortable, and Sunday was a complete write-off. I got by on fruit teas and little else. The sensation I had was that my stomach was full all the time, so there was no room to eat anything anyway. Still nothing but wind in my bag.
So to Monday, when the stoma nurses are back at the hospital. They rang me back and advised that I should have 15ml of Lactulose now, 10ml this evening, and 10ml tomorrow morning. Massage the abdomen, put hot water bottles on there, drink ‘full fat’ cola. I still didn’t really have any inclination to eat. I joined the footy lads, but only for the post-session chat and cuppa, and I pointedly didn’t have a single biscuit; I must be feeling rough.
However, I decided to put my big boy’s pants on and go out for a meal in the evening with my cancer buddy Dave and our other halves. I had the mildest of curries, which I really enjoyed. About an hour after we had got home, the whole lot came back up. Suddenly my stomach feels very empty, but I really don’t want to eat anything. I’m retching on nothingness.
On Tuesday morning I wake from a lousy night’s sleep to find one sad and solitary rabbit dropping in the bag, safely protected by a ballooning atmospheric environment. I ring the stoma nurse again, as my abdomen is very tender, and I still haven’t either passed any poo or eaten anything since Friday. As I massage my abdomen I find a lump, which I fear might turn out to be another hernia. Thankfully a few hours later a similar massage finds the lump in a different place.
When the stoma nurse came out of clinic at about 2.00pm and was able to ring me back, he was concerned. It was beyond his pay grade now. I need a doctor. I might even need A&E. Meanwhile, ring NHS 111 and see if they can get a doctor to prescribe me something. So, I ring NHS 111 and seem to be at the front of the queue (!). The triage person I talk to listens well to my problems and arranges for me to be seen as an urgent case at the local Walk-In clinic. I say ‘local’, it’s about ten miles away.
Nurse Cathy comes with me, and we wait for a while in a crowded waiting room, until I am called in. We both go in and a senior nurse, who tells us she used to work in colorectal, checks me out. She was really lovely and made sure that she’d covered everything. Then out to the waiting area again, until a consultant came to get me. He was even more thorough, listening to gurgling noises in my belly to reassure himself (and me) that there is still life in my digestive system. However, he is very concerned that I haven’t passed anything solid for such a long time, basically coming up to five days now. I am to go to the Big Hospital, to the Surgical Assessment Unit on E Level; he has made them aware of my impending visit, and the reasons for it. It is now 5.10pm.
I was logged into SAU at 5.38pm. They took a blood sample, weighed and measured me, blood pressure etc.. Then they packed me off for a couple of x-rays of my tummy. There was something nostalgic about being back on E Level, especially when I saw the above-door sign to the Surgical High Care Unit, where I had once spent three weeks in bed. When I got back from the x-ray they said they would have to wait until the doctor had a chance to study the x-rays before they could tell me what the treatment plan was.
So, we waited. Then it was handover time as one shift ended, and another began. That was at 8.00pm. Then it transpired that the Registrar that was due to see me had been called away on an emergency appendix removal of a young child. Then he had to write up his notes on that operation. Then he had to read not just my notes, but also notes on a chap called Peter in the waiting room who was actually ahead of me on their list.
Finally, at just gone 10.30, the Registrar called me in. He and the Nurse Practitioner with him were actually really good. It turned out that he is part of Mack the Knife’s team, he might even have been in theatre when I had my operation. Before he did anything intrusive, he explained what he had seen on not just today’s x-rays, but also, he’d checked back on my most recent CT Scan. Apparently, there is an aggregated mass under the hernia; the hernia itself is actually relatively small. Then he removed the bag from my belly and asked if anything was being done about the prolapse; I told him I was on Mack’s list, but no date yet.
Because the blockage would appear to be so close to the exit point rather than deeper in my bowels, he decided to introduce a suppository through the stoma as his first choice of laxative. The ones he had are bullet-shaped, and he was at pains to point out that while everyone supposes that a suppository is supposed to go in pointy end first, in fact they are supposed to go in blunt end first.
Right, now I am being violated. His gloved finger has succeeded in pushing Zeppy’s prolapse back in completely, and Zeppy is flush with my belly for the first time in who knows how long. He then inserts the first suppository in there. Then he double-loads it, another one follows. He is trying to get the suppositories as deep into my bowels as he can in order to get it past the prolapse, and I suddenly feel pressure on my bladder.
Finally, he’s satisfied that he’s got them in there as best he can, and he withdraws his finger. Within seconds, the first bullet comes shooting out of Zeppy and lands on my belly to then roll down onto the examination couch, immediately followed by the second one. All three of us are in hysterics. Then the Registrar has to be serious. He decides that he’ll try again, so back in they go. Result? What do you think? Same again. It wasn’t going to work, Zeppy’s prolapse is so determined to work its way back out that it can’t be stopped, and of course as the prolapse comes out, so the suppositories come with it.
Plan B. An enema, which is actually a made-up bottle of Picolax. This is a job for the Nurse. Zeppy is actually lurking at skin level at this point, and she inserts the nozzle to inject the enema into my bowel. You can tell that Zeppy isn’t too impressed by this as much of what she squirts in comes dribbling back out as soon as. But she perseveres and is eventually satisfied that she has got as much in there as she is likely to. Then we have the clean-up operation as Zeppy is prepared to be re-bagged, and then it’s time to go. But before we can go, Plan C has to be initiated, and she goes into an office, returning with a pack of Picolax for me to use if the enema doesn’t work. If there is no joy from the Picolax, these are the phone numbers here, and they will see you back here as an emergency tomorrow; no need to go to A&E.
We reach the car park at 11.20pm. We get home at 11.45pm. The enema has had absolutely no effect. Knowing from experience how long Picolax can be active I am reluctant to take it at midnight, so that can wait until morning. Even so, I don’t go to bed until 12.30am, just in case the enema might have some effect. Another day without food, and I’m still not hungry. Oh, and Zeppy is in danger of being renamed ‘Sherlock’, as in ‘no shit Sherlock’.
Right… it is morning. Eight-thirty, and time to be a big brave boy and bite the bullet. The previous weekend had been the 80th anniversary of the famous Dambusters Raid. I get the feeling that this is going to be in the same vein. The first sachet of Picolax goes down my neck in a gulp of faith. I know what’s coming, we’ve been here before. Stay close to the loo, get your bag ready to unroll in order to release what’s coming. There I am, sitting in the warmth of the conservatory, suitably close to the downstairs toilet… and I’m sitting there… and I’m sitting there. It’s half past ten and nothing’s happened. The first wave hasn’t reached its target yet. Yet.
Then at just before eleven, I get that feeling. Off to the loo, where a few lumps of poo come through, followed a few minutes later by a far larger quantity. It’s all pretty firm stuff. But that’s it. I stay sitting on the stool in front of the loo for about ten minutes, then tidy my bag up and go back to wait for more action. At least we’ve shifted something.
Nothing happens for a few hours, and at two o’clock I ring the ward for advice. A nurse called Rachel tells me that yes, it’s safe to take the second sachet now. For my colonoscopy it had been an evening then morning job, but now I can send the second wave in for attack. So of course, I neck the second sachet and wait to see what the second wave of Dambusters can do. It didn’t take quite so long this time.
Rather like in the real wartime attack on the dams, the first wave that hit home hadn’t ruptured the attacked dam completely. Instead, it had weakened the structure. It was only when the second wave hit the target that it started to move mountains. Two bags of rather heavily compacted poo followed in slow succession, followed by a third, lesser quantity… and then the dam had burst. Two seriously high-pressure spouts of extremely liquid muck followed in quick succession. And just when I’d got my composure back, a third spout made itself known.
And then… silence. The calm after the storm. Mixing our metaphorical films, we’ll diplomatically move away from The Dambusters, switch to 633 Squadron, and gleefully announce “Vesuvius”, the codeword for success. I rang Rachel to tell her, and she said that just in case I needed more, she’d set me up with a prescription for more Picolax. If I come up to the Ward tomorrow morning, I can pick it up. Nice, how thoughtful.
I didn’t go to bed until quite late, just in case. When I woke the next morning there was a desultory half-cupful of liquid sloshing about in my bag. Nothing more, and nothing expected for a couple of days if previous experience was anything to go by. But oh my God did I ache. My back muscles ached from the vomiting, my stomach muscles ached from just about everything, but most of all the area around and under poor old Zeppy ached where he’d endured such indignities.
As if this hadn’t been adventure enough, I am back up to the ward, as planned, to collect my prescription. It’s waiting for me as promised, and I wander on down to the Hospital Pharmacy where I am advised of a twenty-minute wait. Fine. Then I get called up to the counter… The dispensing pharmacist has a rather disbelieving look on her face. She hands me a surprisingly large paper bag which is clearly full. Nurse Rachel has prescribed me fourteen packs of Picolax. Fourteen! Arguably that is two sachets a day for a fortnight. No way! Fortunately, the pharmacist says with a smile, “As required.” Much to my relief.
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