True to her word, my oncologist sent me an appointment by phone notification within a week. She would ring me in March of next year, 2022. For some reason it seems they don’t want bloods until the scheduled June appointment. Meanwhile I began to take stock of ‘me’. Like the stoma nurse had said, it was a journey. And I certainly feel like I’ve been on one.
Hormone treatment. That’s been fun. Not.
The sweats were stupendous at first. Sitting in a pub at Sunday lunch and the water dripping off my forearms, pouring down my face, and leaving damp patches with salty tide-marks all over on my clothing. Sitting in the garden during a heatwave in tee shirt and shorts, then having to dash indoors to put on a thick winter jumper because I was shivering with cold. Thank goodness for the cyproterone which suppressed it. Even if cyproterone itself is a hormone treatment too.
The hormones of course were there to suppress the testosterone, and the testosterone certainly has some effects on a man. My poor old willy was struggling to get into any sort of action with the prostate cancer alone, but when the hormone therapy kicked in, he was kicked right into touch. Not a flicker. But then, the brain wasn’t getting testosterone messages either, so any idea of what I might use my willy for, apart from endlessly peeing through, didn’t really cross my mind.
Radiotherapy. That had been an experience.
Thirty-seven sessions. Lasting damage? I really don’t know. They say it can take years off your life expectancy, but then it tends to be used as a treatment for diseases that will take even more years off your life expectancy. So where does that leave me? I guess I won’t know until I die… at which point I won’t be able to tell, will I?
Lasting effects? Well, there are the three tattoos I’ve got. I know they’re only dots like biro marks, but they’re there nonetheless. And then there’s the strange co-incidence that the slight weeping out of my bum from during the treatment programme never stopped, and a malignant tumour grew there. I do still wonder if there is some sort of cause and effect linking the anal cancer and the radiotherapy. The main lasting effect, which remains to be seen in full, is how much damage it did to the cancer cells inside my prostate. It certainly gave them a good fright if nothing else!
Biopsies. From memory I think I’ve had three of them.
Two confirmed cancer – in different places – the other one was inconclusive. The first one was for my prostate, and went up my bum to stab the prostate multiple times. I didn’t enjoy that one, thank you very much. The result didn’t come as any surprise. I had a fatalistic inner knowledge that that was what it was. I recalled being a smoker in my early twenties and knowing that smoking caused lung cancer, but thinking that cancer probably wouldn’t happen until I was in my sixties by which time it wouldn’t matter as I’d have had a good run. Well, it was prostate rather than lung cancer, but it still came as something of a reality check, in particular the fact that being a mere sixty-five years of age is actually far too young to go!
The other two were for the growth in my anus. I had thought it was a recurrence of haemorrhoids for a while, but then I found I could feel some kind of small lump there when I wiped my bum after a poo. It turned out that the first biopsy was somewhat inconclusive about the true nature of the beast, and they wanted a second one to really have a good look. Being where it was and how tender it was, I was unconscious for both of them. This second time it confirmed what I had suspected, but whereas I’d thought they could just cut the lump out and then give me chemotherapy to clean things up, I was told very differently. Oh no, they were going to take my anus away completely and I’d be pooing out of my belly for the rest of my days. It was either have that operation or I’d die. So it was that my stoma Zeppy the Zeppelin was born.
Prescriptions. They’ve been many and varied.
There’s the obvious ones, like the tamsulosin to try to regulate my peeing. I did without it for a few days once, but by Jove I was back on it quick enough when I needed, was forced, to have a pee every hour of the day and night without it. I’ve recently found out that one of the side effects of tamsulosin is itchy skin. I’d wondered why that was happening, especially between my fingers, and I’d assumed it was a reaction to using different hand sanitisers as I went in and out of different places. Then there was cyproterone to suppress the sweats caused by the Prostap, which was a blessed relief. There were others that controlled blood pressure (amlodipine) and indigestion (omeprazole).
I was always a bit confused about exactly why they kept me on omeprazole for so long. Originally I was prescribed it by a Practice Nurse when I went to see about the weird fact that when I laid on my left side at night I wheezed, but not when I was on my back or my right side. She also told me to put a pillow under the mattress, as that would kind of angle things differently for me and should help stop it. Under the mattress? Yep. And it worked. Now that I’m off omeprazole, I still don’t wheeze when I am lying on my left side, or lying in any other position, or indeed at any other time. I no longer have a pillow under the mattress, and very importantly, I don’t get night cramps in my legs any more.
One of the more esoteric prescriptions of course was sildenafil, better known as Viagra. My poor little willy wasn’t really up to much (see “hormone treatment”, above) following the twin debilitation from both prostate cancer and Prostap, so the nurse at Urology came up with that solution. Sadly the combination of the two proved too much for the Viagra to do much about, even with the help of a prescribed vacuum pump! But since I’ve come off the Prostap… well, it’s not what it was ten years ago, but there’s definite signs of life.
Once I’d had the operation to amputate my anus, and the wounds had healed, I was urged to work towards regaining my mobility and some level of fitness. With a stoma being basically a bit of intestine poking through a hole in the abdominal muscle wall, the risk of hernia for ostomates is very much multiplied compared to someone with an intact muscle wall. So every year I get three support belts on prescription. One of them that I got last year was a shield belt, with an integral equivalent to a cricket box that fits neatly over the stoma pouch. I wear that one to play football in. The others I wear to play golf, to do any manual work like gardening or lifting anything, and to go shopping in (especially if I’m pushing my dear old mum around in her wheelchair).
The other prescription I get is, of course, the pouches for my stoma. Literally shit-bags. Mine are what they call “drainable”, and as a result, depending on how productive Zeppy is, the same pouch can last me maybe three or even four days. Being drainable is also helpful because of the frequent Zeppelin nature of Zeppy; when it inflates, it inflates! I normally drain it morning and evening, especially before I go to bed. Putting a clean fresh one on is usually a bedtime job, but not always.
The bags come in boxes of thirty, with the holes pre-cut so that they fit more or less snugly around Zeppy. Along with the pouches I get disposal bags, dry wipes, and cans of release spray to save the skin from being harmed when peeling the adhesive off my delicate little belly. Naturally, because Zeppy never goes anywhere, it’s the same patch of skin that gets covered in sticky plastic all day every day. So far so good, I’ve had no adverse reaction to the adhesive.
So that’s kind of summarised it all… for now.
But, as ever, things move on, and sometimes they move on more quickly than expected. I was always happy that Zeppy was basically flat, or flattish, to my belly. It made it easier to put the pouches on, and to have the holes cut to size on them. Then gradually he began to poke out a bit – what the Colostomy UK Facebook group call an “outie”, as opposed to an “innie”. But he would still shrink back whenever I changed bag and washed him clean.
Then they took me off Prostap, and those thoughts came back. And I took a Viagra, and made efforts to get my poor little willy back into action. And suddenly Zeppy was growing almost as much as willy, and wasn’t retracting when being washed, even several days after the last chemical erection attempt. It meant that I was struggling to get Zeppy into the pouches properly, and had to re-cut the bag to make the hole larger.
I rang the stoma nurse at the hospital, but he said that he didn’t think the Viagra and what sounds like a possible prolapse were linked. They shouldn’t be. But the outcome was that almost exactly two Covid19 years after my last face-to-face stoma nurse appointment, he offered to see me to have a look at Zeppy and give me a professional opinion on whether or not all is well. He’ll also prepare me a template to send to the suppliers so that they can cut the pouch wafers to fit Zeppy.
Then I get a letter telling me my oncologist has left. She’s gone elsewhere. I’ve got a new oncologist. I rang them to leave a message to check if they need a blood test for me for my telephone appointment on 7th March, as I’ve only got a bloods form applicable to the appointment after that in June. Yes, they do need one, and will send me the form. Then in almost the very next breath I get pinged an e-letter telling me my colorectal consultant – Mack the Knife, no less – wants to see me the following Monday on 14th March!
Then I went to see the Stoma Nurse on 24th January. He was good, he has a very relaxed manner. I introduced him to Zeppy. I’d asked for advice from the Colostomy UK Facebook community about what I should do with my bag in preparation for the appointment. Last time I’d seen a Stoma Nurse I was still on the “low residue” diet, so there was very little going on in my bag, and I also hadn’t worked out how “drainable” bags worked, so it had been fresh on that morning. Now I was on the “I like it so I eat it” diet, and the bag had been on since Friday – and today is Monday.
Some people said put on a clean bag, on the same principle as you’d brush your teeth before you go to the dentist. Others, including an ex-Stoma Nurse, said just flush it through and reflect your real world so that he could see exactly how you are doing. So I flushed it through and that’s what he worked with. Zeppy himself, come the reveal, was a little bit grubby, but Nurse was cool with it. He wiped and poked and prodded, and came to a few conclusions.
Your skin is very good, no granulomas, no sores. The stoma itself is very healthy. But it has prolapsed a little. To me it looks like more than a little, but I guess he’s seen far worse. And, after some more poking and prodding around my belly, I have a very small hernia just to the left side of Zeppy. Wear your support belts for a bit longer, the longer the better. So it wasn’t really the news I wanted, especially about the hernia. He also measured Zeppy up, and where he’d been circular at 25mm when he was born, he was now elliptical. The hole in the bags’ wafers now need to be 35mm horizontal and 32mm vertical. Time to ring up my suppliers about the next box they would send me.
I’d kind of expected confirmation of the prolapse, but when I told him I was seeing Mack in a couple of months’ time he didn’t think Mack would be interested in doing anything about the prolapse or the hernia at this stage. So my own pet theory that Mack had only sent me the appointment in response to Nurse’s contact notes saying I suspected I had a prolapse was blown out of the water.
Instead Nurse showed me how to push, prod, or poke, Zeppy back into place. This now means there will be a change to my bag changing regime. It took him a few attempts, because he kept saying things that made me laugh, and whenever I laughed my belly wobbled a little and Zeppy popped his little head up again. Don’t laugh, it’s not funny, concentrate!
Instead of the relatively underused downstairs loo being home for my stoma kitbag, I’m moving into the main bathroom upstairs as Nurse told me in order to push him into place I need to be lying on my back and relaxed. Rather than a cold bathroom floor, it sounds like time to be lying on the bed to me… and so Cathy has promptly gone out and bought a box of puppy pads so that I can safely lie on the bed without too much danger of any spillage causing unpleasantness.
She’s been reading about this sort of thing on the Colostomy UK Facebook group. That’s three times I’ve mentioned the group now in this chapter, I’ll be after royalties or something in return, or whatever it is us ‘influencers’ get. Anyway, I can carry on draining my drainable bags as normal downstairs, which at least saves Cathy from having to suffer following my having ponged the place out. Changing the bag is usually much less offensive than draining it – it’s more contained.
Mind you, Cathy can be rather strange when it comes to hygiene and cleanliness. Normally fastidious about such things, she’s now offering to take lessons from me in poking Zeppy’s prolapses back into place “in case you get ill and can’t do it for yourself”. I’m really quite nervous about the prospect, much more so than she is. Naturally enough, the first (and second, and third…) bag change after we’d rearranged everything proved to be normal, with Zeppy deciding to withdraw back to his usual old self (for now).
So to my next round of appointments, starting as always with the blood test.
28th February – routine quarterly blood test at hospital Oncology Dept..
2nd March – text message from GP surgery “Our records show you are due a Blood test soon. Please contact the surgery to arrange this.” Email sent to GP Surgery asking if this was necessary, as I’d just had one at the hospital.
3rd March – email reply from GP surgery “Please provide your date of birth or NHS number so we can correctly identify you.”
4th March – email from GP surgery “I have now heard back from Dr Xxxx who says, in reply to your e-mail, he does not require you to have another blood test here as he has downloaded the ones you had done at Yyyy hospital.”
Hooray! Isn’t communication a wonderful thing? Presumably this means that the GP surgery computer and the Hospital computer are now on talking terms and chatting about me behind my back. To which I simply say “Good. And about time too.”
So there I am waiting for the phone call from my new Oncologist, and of course I weigh myself and do a home blood pressure test. Whenever I went to face-to-face appointments a nurse would always do the business with these, so it only seems right that I should keep their records up to date. The weight isn’t so good, back over 12 stone, but that might be something to do with having come off the diet and having been on a comfort-food holiday-short-break last week where I ate more than I could really cope with. Blood pressure was good though, at 111/67.
Then she rang me. The new oncology consultant introduced herself, and just got on with it. PSA up again, now 2.3, pretty well what I expected with the removal of hormone therapy and increase in testosterone. Only they didn’t have a reading for testosterone this time, that’ll be for the next one. The way she said it, it sounds like my next one will be face-to-face.
Basically things have been developing in such a way as to say that I am still living with cancer, with prostate cancer. It is still there. What they need to do now is find out how much of it is still there, how active it is, and check that it hasn’t spread anywhere else. So my next appointment will be in eight weeks’ time, and before then I will have a CT scan and a Bone scan, and a week before the appointment another blood test. It’ll be a Friday morning.
I might well end up back on the hormone treatment, as that has suppressed the cancer for me. The reason I’m off hormones at the moment is to see what is going on underneath the suppression. Well, I guess we’ll find out in the next exciting chapter of my epic battle with my cancers. A trip to Colorectal and a trip to Oncology within the next two months. It’s not a dull life.
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