There were a few questions I wanted to ask when I saw Mack the Knife, my Colorectal Consultant Surgeon, on 14th March for my slightly delayed two-year post-operative review.
Have I got a sigmoid-, an end-, or a transverse- colostomy? Interestingly enough, it turns out to be a ‘sigmoid end colostomy’. He explained it as being taken from as near the end of the digestive system as they could, while making sure they removed all the cancer.
So did I have colon cancer or rectal cancer or anal cancer? He said that I knew the answer to that. Yes, it was anal.
I have a vague memory of him saying something about fourteen lymph nodes being removed. What was the significance of that? They were simply contained in the fatty tissue that they took away. There’s always a danger of the cancer having passed beyond the boundary of the tumour, so they had to take a bit around it too. So the answer is that they were removed simply “because they were there”.
Also, a lot of APR patients talk about having had part of their coccyx removed… was mine trimmed at all? No, none of that was removed.
Why does the right side of my abdomen curve smoothly and naturally from my belly button to my hip, but even before the hernia the left side is more of a ski ramp down to the hip – is it missing bowel that causes the difference? He didn’t know why it should be like that, but complemented me on having lost weight since we’d first met.
Incontinence? Quite minor, but enough to need a pad. A tiny drip that gets stuck between bladder and exit that doesn’t shift except by gravity. I assume it is muscle damage, any chance of physio for specific pelvic floor exercises? He didn’t really answer that except to say that the radiotherapy for my prostate might well have caused some problems with it as the prostate is right alongside the urethra.
Stoma prolapse: How big does it get before something gets done about it? Hernia: How big does it get before something gets done about it? The answer to both was “not yet”. They have to be giving me a lot of discomfort, or maybe making it difficult to keep the bag on securely before they’ll even consider it. He did say they would use the existing site and support the repair with a mesh. But they are reluctant to dive in unnecessarily as there are plenty of complications available to the unwary. I told him, and the nurse helping him, that poking the prolapse back in is a truly weird experience, truly weird.
Anyway, questions asked and answered, the important bit was that he was happy with my overall progress. The scars have healed very well, especially considering I’d split so many stitches early on, and I look healthy. He’s happy that there’s no sign of a perineal hernia, and the heaviness I feel in there is normal, repositioned bowel sitting where it never used to. He knows that Oncology are keeping a close eye on me in terms of scans and bloods, so he’ll see me again a year from now. Colorectal won’t do another CT scan until year 5, three years’ time, and the colonoscopy result from before was clear and recommended no need for another one.
So we wait until May for the next Oncology appointment, and my new oncologist getting to know me, and about me, a bit better. But in the meantime, her promise of additional scans to monitor my situation was being fulfilled. I had a Full Body Bone Scan booked in. And it was booked in for exactly a week after I’d seen Mack, the following Monday.
I was to present myself at just after nine in the morning, then go home, and return at one-ish in the afternoon. When I got there, and booked in at reception, as I went to sit down in the waiting area, a Covid-masked voice called out “Stew, Stew, hi there!” It was one of the lady golfers from the golf society I play with. She was there for oncological scans as well, and had been there since seven-thirty already. We had a brief chat before I got pretty well instantly called in for my nuclear injection, and after I’d had that I had to sit and wait in case of a reaction, so we chatted to compare notes until I could ring Cathy up for a lift home.
I returned a few minutes early, and was pleasantly surprised when I got called in immediately for my scan. It was full body, so it would take a while. And it did, I think more than the twenty minutes he’d predicted. Just before it ended the radiologist came in and asked me a few questions about any aches and pains I might have.
I told him I felt pretty well OK apart from my ribcage, just below and in front of my right armpit. I’d had a hefty collision playing walking football (a non-contact sport!) the previous Monday morning, just before my meeting with Mack. My elbow had been caught between a bloke I would call a “big unit” and my ribs. It had certainly hurt at the time, and still did, especially when I rolled over in bed.
“Ahh.” He said. “That might explain it.” Explain what? It turned out they had found three ‘hotspots’ in my chest, all in the area I was indicating. These ‘hotspots’ are places where the bone is trying to heal itself, and their ‘activity’ shows up on the scan. Obviously cancer on/in the bone causes some sort of similar-looking ‘activity’ as the bone tries to rid itself of it. The doctor was at lunch, when he gets back he’ll take a look at the scan so far, but we’ll want to take a closer look to be sure of what we’ve got there.
So I just sat around outside the scanner room until the doctor came back from lunch and had a look at the pictures. They had to run another scan. Of course they did. If these turned out to be nasty hotspots and they hadn’t double-checked, they’d have been in deep doodoo. So it’s back into the scanner with you, arms up and hands behind your head so that we can get a good look at your chest please.
Instead of being run backwards and forwards through the flatbed, this time I was positioned under the flatbed which then rotated around my chest. As it rotated, it turned out there were two flatbed scanners, one above and one below, cunningly numbered ‘scanner 1’ and ‘scanner 2’. They seemed to be pretty thorough about it, as this scan took about the same amount of time as the first one.
They didn’t say anything afterwards, except that if they found there were any problems they’d obviously let me and my oncologist know. So I was left with the understanding that three hotspots in my ribcage, exactly where I was splatted the week before, probably equated to three cracked ribs. Non-contact sport indeed. My golfing friend was still there in reception, waiting for her scan. Just as I sat down to chat with her, she got called in. Apparently she didn’t get away until nine-thirty that evening; a very long old day for her.
No news is, I suppose, good news, and I didn’t hear anything about the bone scan at all. Then we reach May, and on Bank Holiday Monday 2nd I’m in for my regulation blood test. Tomorrow, Tuesday 3rd, I’m in for the promised CT scan. Then on Friday I’m actually scheduled to meet my new oncologist. Yes, a real live face to face consultation; well, strictly speaking, mask to mask I suppose.
OK, so here we are, the appointed appointment day. A new oncologist is comparing my notes with someone in another room. Then she invites me in to her office. There are two seats, so I could have been accompanied by Cathy, but we’d assumed it was still very much attendance on a needs-must basis, and that that meant patient only.
She cut to the chase pretty much straight away after the introductory pleasantries. The two scans, Bone and CT, were absolutely clear with no sign of anything sinister at all. Apart from my cracked ribs. My bloods showed that my testosterone is back to normal, well, normal for a normal kind of normal bloke. I told her about my newly recovered and testosterone-fuelled teenage years, and how that was affecting me – greasy skin and spots, smelly sweaty boy, naughty thoughts and their consequent reactions. All good fun.
But… but my PSA was up to 4.1. It is on the rise, and that can only mean one thing. For all the lack of evidence of cancer cells in my scans, there must still be some unwelcome guest cells frolicking away inside my prostate. Totally as I had expected she said I was going to be back onto the hormones again. Hi there Prostap, did you miss me? If it’s all right by you, I’d like the cyproterone as well please.
But… as well as that… you know you can’t have any more radiotherapy don’t you? You’ve had your lifetime allowance. We think you should have a course of “up front” chemotherapy now. It’s not compulsory, but we think it’s a very good idea. A short course of six doses of Docetaxel should give you much better outcomes over the next five to ten years. And unlike the radiotherapy, the treatment can be repeated and extended in five or ten years’ time.
Then her boss, the person that she’d been discussing my case with before I went in to see her, came into the room along with a the Uro-Oncology nurse (that’s the Viagra nurse to you and me). He said that clever as these scans are, they can’t pick up minute activity, and there must still be cancer active within the prostate for the PSA to be on the rise again.
Anyway, she’ll see me again in a couple or three weeks’ time to detail the plan. Meanwhile she’d like a baseline blood test before I start taking my new course of Bicalutamide 50mg (pre-Prostap) hormone tablets this evening, so can you take this form with you to phlebotomy please? Oh, and I’ll email the prescription through for you to collect from the hospital pharmacy after you’ve done your bloods. No, she won’t, the hospital system doesn’t work that quickly, I’ll have to come back this afternoon to collect them.
In the previous chapter where I talked about body image I spoke at length about my scars from both my infancy scalding and its skin graft treatment as well as the operation scars from my APR surgery. Talking about cancer sometimes hits home on the mortality button, and on the way back from the hospital I was thinking about my relationship with the Grim Reaper. It seems almost as if my scars are his fingerprints. Firstly, he puts his hand on my very young shoulder and shakes his head saying “No, I don’t think so, not yet sonny.” Then all those years later he pats me cheekily on the bum and hurries me along out of my complacency saying “I’ve still got my eye on you, boy!” Yes, it’s a strange relationship I’ve got with my old mate Grim.
Next up, I suppose, will be the Chemotherapy Chapter.
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