Nurse Cathy collected my next batch of enzalutamide as planned on the Monday. Just the £8,204.01-worth of the stuff, 12 weeks’ worth. She’s being fantastic… again, and she won’t let me do anything even vaguely strenuous. The wounds are healing, and with the arrival of this batch of “enza” (as the oncologist called it), I make up my post-op Dossett box for the next seven days. I run out of painkillers in eight days’ time, but they are only paracetamol, readily available over the counter. The senna tablets run out at about the same time.
The old maths teacher in me is playing with the numbers now. From 98.2, to 72.4, to 45.0 in four-week increments. So, taking the reductions of 25.8, followed by 27.4, gives an average reduction every four weeks of 26.6. Which means that after another twelve weeks my PSA should be down to -38.4. Which seems a bit unlikely. I don’t think you can have a negative PSA. As long as it continues downwards as far as possible, that will be good news.
Then it’s stoma nurse day. Which starts rather badly. The bag, full of thickly sloppy poo, mostly detaches itself from my belly without me even noticing! The kitchen floor, my tee shirt, and my dressing gown are all in need of a good wash. Considering I’ve just poo’d myself, my underpants are clean as a whistle – I bet you can’t do that! The weak point is the line of stitches along the ex-hernia. I never did feel confident in the new style of bag the nurse had given me at the hospital from the start, and I’ve never had a bag do that before.
Nurse Cathy is as calm as you like. We make it through to the downstairs toilet and remove the bag completely, but cleaning up around the stoma is more demanding. Holding a dry-wipe over Zeppy, while Nurse Cathy carries my supplies bag, we go upstairs and I get into the shower. For the second time in not very long she’s helping me to clean my stoma. What a mess. I don’t know whether to feel embarrassed, incompetent, or any number of other inadequacies. Sad old man comes to mind. Then “piss off Grim” comes to mind. Let’s get rational… it’s the stitches that are compromising the bag’s adhesion, once they are out it’ll be all right.
The stoma nurse will take them out, won’t she? We are at the appointment, and Cathy comes in as my chaperone – yeah right, but she’s turning into more of a carer than I’d really want her to be. I don’t think it’s fair on her, having to deal with this. Anyway, the shiny new bag that I’d only put about an hour and a half before came off, rather gingerly as it already has laxative-inspired product in it. The nurse very gently tidied the stoma and hernia wounds, removing some of the glue that is peeling away, but she isn’t prepared to take any of the stitches out. They are dissolvable, let them do their job. But she’s happy with the healing so far.
After Cathy and I explained what had happened this morning, she went into her store cupboard and brought out some barrier rings. I’d vaguely heard about them on the ColostomyUK Facebook group but didn’t really have a clue. We both watched intently as she demonstrated how they worked, and then put the spare bag I’d brought on over it. I have to say, two days, and a couple of heavy bags full later, it seems to be working remarkably well. Come back in a week’s time and we’ll see how it’s doing. OK, next Tuesday afternoon it is.
Next up I ring up Respond, who are my stoma supplies supplier, and tell them that the stoma nurse has advised me to get a supply of uncut, rather than pre-cut to any specific size, bags. This is because the stoma is going to settle down to a new size when the swelling goes down, the stitches are gone, and the healing is complete. No problem, my delivery will be on Thursday. Wow, that’s quick. Also asked for extra removal spray as I’m getting through more because of the stitches from both refashioning and hernia eviction. Again, no problem.
Then I get a text on Wednesday saying my order will be delivered tomorrow (excellent), and “we look forward to speaking to you again on 11/10/2023 – The Bullen Healthcare Team”
Two questions arise…
1. Are Bullen and Respond the same people? No, I know they’re not.
2. Why are Bullen wanting to ring me all of a sudden, when I have always rung Respond on a needs-led basis (I get boxes of 30x drainable that last on average 3 days each, so don’t need monthly orders)?
I’ve heard of Bullen, suppliers for lots of others on the ColostomyUK pages, but how have they suddenly got involved? And why? So I rang Continence Service Prescriptions to query it. It turned out that Respond hadn’t had any of my usual bags, so CSP emailed around, and Bullen did have them, so they picked the order up. They won’t ring me monthly, it’s a standard text that they send out. Happily enough, next day here they are. Joined up thinking, nice.
So, let’s have a current summary: The sweats are still a bit sweaty, but seem to have reduced a bit since doubling the cyproterone dosage. The extra pills are coming close to an end, no more senna and just store-bought paracetamol on demand. The bag, seemingly well-sealed, is smelly. I can’t work out where the leak is coming from unless the filter isn’t doing its job properly; it’s probably the hernia stitches. I’ve bitten the bullet and used about a third of a flange extender to give it a bit more support across the hernia stitches; that’ll take a lot more spray to release but might be worth it. Oh, and the release spray that Bullen sent me smells of a fragrant peppermint.
Anyway, another follow-up appointment with the stoma nurse, and all is well. She managed to dislodge a bit more of the glue that was detaching from my skin, but still attached to the stitches and hence giving me a bit of grief. Overall, I’m doing well, but she thinks I should change my bag more frequently while I’m healing; no more than 2 days apart, however drainable I like to think they are. She’s also added the barrier rings to my prescription, ordered 30 while I was there, and they are available to me whenever I ring CSP with my future supply requests. I see her again in a fortnight.
Right, I think I’ve sorted out the leaky bag problem. Goodness knows I made enough of a meal of it. On holiday for four nights glamping, I had two major leaks, both times great dollops of poo just waiting to fall on the bedding, the floor, or indeed anywhere. A closer inspection of things show that the barrier ring tends to delaminate, and some is left behind on my skin after I think I’ve cleaned myself and Zeppy up. I then inadvertently lay the next barrier ring on top of the fragments of the previous one. That irregularity coupled with the stitches and glue are proving to be weak spots under the bag. We live and learn. Although actually the hernia wound running under the bag seems have lost its stitches now and looks quite a smooth fresh scar instead.
Stoma nurse again. She was really very pleased with the progress of the past fortnight. I told her about the two leaks I’d had, and how I needed to be more careful about removing every last vestige of the barrier ring before putting on the new one. But that hurts to do, so I guess I’d just hoped for the best that I’d done enough, which I hadn’t. She suggested that I should try some different bags, so she put a bag with a convex flange/wafer on it, but not before she’d managed to remove the last of the glue from the wounds.
Suddenly, without the glue, several more stitches came away, and the irritating pain they caused is gone. The deeper wounds, internal, are still very achy tender, but the superficial stuff seems a lot less pain-giving. One of the stitches objected to being removed, and a spot of blood hove into sight, so she found a dressing which she put on the hernia scar and over the weak spot of the bag seal as well. The barrier ring she put on was a thinner one as well, and she gave me a few of those to take away along with a box of the convex bags. Oh, and wipe any residue from the rings off with paper towel, don’t use the spray, it just confuses the situation.
In amongst all this she was talking about preventing another hernia. She mentioned “Core 4” exercises, which I confess I’d never heard of. In fact, I’d never had any advice about rehabilitation or safe exercises following my original operation. You try to keep things as obvious as you can, but my idea of working on my core strength is probably not what is needed now. She had a couple of booklets about it, which she’d give me. Then we all forgot about the info booklets as she booked my next appointment. Cathy and I went for lunch at the hospital café where we remembered them and went back to collect the booklets after that.
After a week of trying out the convex bags, I decided to ring back and tell the stoma nurse that I wasn’t really getting on with them. The base plate is really quite firm, and the relatively narrow edge of more flexible bit of the flange wasn’t sticking onto the skin in the dip of my belly button; I do have quite a deep belly button. I simply didn’t trust it not to leak there. Also, the poo, by now much firmer thanks to running out of senna and Movicol, is of a more ‘appropriate’ consistency, and wasn’t moving down the bag, so much for late effects of radiotherapy sloppiness. Back to my usual bags, thank you very much. Zeppy has shrunk back to 25mm round, just like he was when I first met him nearly four years ago.
The whole healing experience is actually going rather well. But I am tired and lethargic still. I think it’s a combination of the ‘chemo-lite’ enzalutamide coupled with the healing that causes it. Also the sweats are far more noticeable and in the cooler weather I am getting chilled to the point where I have to wrap up a bit. The peripheral neuropathy in my toes is also far more noticeable, which I think might be down to the enza.
I am getting frustrated at waiting for the eight weeks post-op that I feel will be the right time to commence the Core 4 exercises. The booklet the stoma nurse gave me suggests that I should have started almost before I had left the hospital, but somewhere else I had read to allow eight weeks before attempting anything even vaguely strenuous. Given what happened with Banksy’s artwork four years ago, I really don’t want to risk any rupture of the stitches, any undoing of the healing.
Meanwhile, prostate cancer, remember that? Oh yes. Edmund Slackbladder isn’t behaving himself at the moment. My mind goes back to the hospital stay, and the catheter they had to put in because of a partial blockage of my urethra. I don’t really want to be stuck with a catheter thank you very much, but eventually I bite the bullet and ring the Clinical Nurse Specialist Metastatic Uro-Oncology, remember her? She needs to rule a urinary infection in or out. She arranges for me to have a blood test – tomorrow – and tells me to go to my GP for a urine dip test.
So to tomorrow, and I’m up and out pretty early. Off to the GP where I get the promise of a return phone call from a nurse called Lucy; I know Lucy, she’s stuck Prostap needles into my arms often enough. Then off to Oncology where I pick up my blood form and go and get drained of yet another couple of vials (painlessly, thank you). Then Lucy rings in early afternoon and tells me I can’t have a dip test because I’m over-65. It’ll have to be a sample; the bottle will be waiting for me at reception in five minutes. Done and dusted, we wait and see, the results will include an update on my PSA.
The Edmund Slackbladder ‘problem’ is odd. Sometimes I can go for hours and drink plenty of tea or coffee, or anything else, without getting any urgency. Then at other times it is just the turning on of a tap at the kitchen sink and I’m dashing off to the downstairs loo. So much so that the downstairs loo has been rebranded as ‘The Panic Room’. The upstairs loo is mainly for waking up at night and feeling the need, the need for speed.
Well, a week later and no phone calls. I checked on the NHS app, and that showed me that the urine test had come back as follows: “Urinary MC&S Microscopy Result N/A Normal Range N/A; Urine culture Result N/A Normal range N/A”. I’m assuming that that means I haven’t got a urine infection. Or alternatively if my results are not applicable to the normal range, then… I think I do need that call back thank you. I also left a voicemail with Uro-Oncology asking if they had any news about my blood test, as that wasn’t mentioned on the NHS app.
Sure enough Sam from Uro-Oncology has rung me back on Friday afternoon. PSA is down again, to 35.8 from 45.1; they didn’t tell me about the point one before. So mid-thirties from high nineties since I started on the enzalutamide, it’s got to be a good thing. I’d kind of hoped for mid-twenties at this stage, but I suppose the old logarithmic curve was bound to slow down after the plummeting beginnings. She spoke about the urine problem, and counterintuitively she said that I should try drinking a lot more. Peeing little and often is often a sign of dehydration, apparently even if the urine is the “right” light straw colour. Lay off so much caffeine, that might help, but don’t give it up completely if you enjoy it. Water is good, apparently.
Meanwhile, the ‘chemo lite’ seems more and more an appropriate description for the enzalutamide and bisphosphonate regime. My hair is thinning and slowly but surely dropping out again, but nothing like as dramatically as when I was on the docetaxel. I don’t know, I just wish it would make up its mind, it’s like the tide, coming and going. At the moment it is ebbing. The hairiest bit of me now are my legs, which are not just retaining hair, but becoming positively luxuriant. I suppose that’s because I’m not so active as I was, no footy and hardly any out-and-aboutness to erode it as this knee just won’t heal. I am annoyed with that, as it had been noticeably on the mend until the enzalutamide and bisphosphonate regime started.
I honestly thought that my convalescence from the surgery would complete the knee’s healing process, but no. The next round of bloods and oncology consultation can’t come too soon. Hopefully they’ll give me a bone scan and I can mention my knee and get them to look at it and give me some idea of what is going on. In the meantime I’ve booked a GP telephone consultation about it for 24th November; today is the 7th. Apparently they’re very busy.
So a phone call to Sam at Uro-Oncology again. The knee gave me a lot of grief last night, I needed some sort of advice before another fortnight of that. She suggested paracetamol. I told her I’d been on it while the surgery was healing, and it hadn’t touched the knee. Then she said that she’d checked the side effects of enzalutamide and one of the rare ones was bone and joint pain, but very rare; yep, that would be me then, courtesy of dear old Grim.
I was honest with her, I was worried that the cancer might have identified a weak spot and grabbed hold of it there. She didn’t seem to think so. Her advice was to lay off the enza for a week to allow the body’s natural repair systems to reset themselves; I double checked, yes it was the enza she was advising me to stop for a week. Meanwhile she’ll send me a bloods form, as it’s coming up to that time again.
Nurse Cathy had in the meantime given me a jar of CBD cream and told me to rub it into the knee. I did wonder whether to rub it into my knee or put it in a cake mix. I layer a support bandage over it as much to keep the oiliness off my trouser leg as to support the injury. No guarantees, but that night the pain in my knee was much reduced, and didn’t disturb my sleep at all. I’ll keep using that, including next week when I’m off the enza. If it works I’ll cancel the GP phone call.
So to the following Monday, and I’ve reloaded my Dossett box without the enzalutamide. The great leap of faith. Or more correctly, the great hop of faith, seeing as how much grief my left knee is giving me. I do hope this knee problem can show some signs of improvement. All of the doctors want me to be active. I want me to be active. I think there are even moments when the walking football team think it might be handy to have Stew active.
I’ve had one of those activity watches for years now, but in all honesty, I only use it for the most basic of functions like telling the time. After walking around the block with Cathy on Wednesday, and going by myself on Thursday, I suddenly remember that it can measure how far and fast you walk, how many calories you burn, even draw a map of where you’ve been, all sorts of exciting snippets of information. So I set out on Friday to measure exactly what my “around the block” consisted of.
It took a couple of hundred yards for the watch to locate the GPS, so I didn’t quite get full value for measuring my walk, but it turns out that “around the block” is just over a mile, it is almost flat, and I walk at three miles per hour. That’s when I’m not with Cathy and we slow or stop to admire gardens, or pop into the pub for a quick pint, and then I’m not so quick. Average steps per minute 112; average stride length 0.72m; peak heartbeat 120bpm (average 99). It’s a nice flat neighbourhood, so total mountaineering achieved was 21 feet in gentle, almost imperceptible, undulations; not quite a stroll up Everest. Oh, and 105 calories burnt, apparently.
So to the Friday, and my 3.50pm telephone consultation from my GP arrives at 3.05pm. My actual named GP, yes, we’ve only ever corresponded by prescription renewal requests before. I tell him about my knee. It’s close to the end of November now, and the injury was from May. “You were playing football?” It was almost as if he wanted to say, “You stupid boy, at your age, you should know better.” Yes, walking football, I twisted my knee, I thought I’d tweaked a tendon.
I told him that it felt like it was healing quite well until I was put on the enzalutamide and bisphosphonates, and it has remained stubbornly unimproved since then. As you can imagine, I said, I’m very anxious that it might be bone cancer (laying it on a bit thick, but why not?). In response to that, he’s going to refer me to their physiotherapy team. I told him that when I speak to Oncology in December, I’ll tell them the same story and see if they are willing to run me another bone scan.
So that was Friday; a telephone call from the receptionist on Monday, the physiotherapy team will give me a triage call on Wednesday. Progress, I suppose. Sure enough, on Wednesday I get a call. She endures all of my moans and groans about my knee, coming back with question after question to clarify things. I think I’ve remembered all of my attempts at treating it, as well as all of my worries about it, and wishes for it to become playable on the football field again.
Not long after we finish the call, she emails me an exercise regime to follow. It all looks pretty innocuous to be honest, until I try it. There’s no breaking into a sweat anywhere but the tension, especially in my thighs and across my surgically diminished buttocks (what about my knee?) is quite painful by the end of it all. It seems it’s all about a seventy-year-old bloke building up his leg muscles in a low-impact way. If the knee hasn’t resolved itself after five weeks of this, call the surgery and she’ll reassess it.
To Thursday, and bloods. Bright and early at 8.00, done by ten-past. Now to wait for the call tomorrow morning. Except they don’t call tomorrow, they call today. Just after 1.00. Ah, they’ve remembered I like to go to walking footy on a Friday morning. No, a very soothing female voice is on the phone. How are you Mr Russell, how do you feel? Any aches and pains? Ohh (sympathetic sound), well, apart from the knee and the physio exercises? Does the lethargy from the enzalutamide mean that you spend 50% or more of the day sitting or lying down? (I’m getting suspicious, why do I think that this silky voice is bloody Grim trying a new tack?) Umm, yeah, probably, I do get tired quite quickly, and my hair’s falling out… again. Ohh (more sympathy).
We’ve got your blood results through from this morning, they look pretty stable. Can I ask, have you been doing anything unusual yesterday or the day before, anything to upset your system? For example have you ejaculated? Bloody hell, I haven’t done that for years. Ohh (yes, more sympathy). She is a very sympathetic doctor. Excellent telephone-side manner. (Cuts to the chase) Your PSA was 35.8 in October, it hasn’t gone down. It is 56.5 today, a surprising change. It is bloody Grim Reaper after all, he’s back on my case masquerading as a nice person.
Fifty-six point five! Where did that come from, I was expecting something in the twenties? Don’t worry yourself about it, if you are happy to continue with the enzalutamide, we’ll have another twelve weeks’ worth waiting for you on Monday. We’ll set you up with another CT and Bone scan in the New Year. I’ll send you a blood form for then.
Ah well, I’ll go and collect my eight grand’s-worth of drugs on Monday, and carry on. One of the things it says about enzalutamide on the contra-indicators list is that alcohol may inhibit the effectiveness. Guess who is going alcohol-free for a while? OK, Christmas and New Year need navigating, but apart from that…
Stewart's Blog 