The Cancer Diaries, Part 4

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A home is not a sterile environment. Not mine, anyway. With two cats, a dog, numerous houseplants,  rooms full of books, and my sometimes lackadaisical attitude toward cleaning, our home will never be sterile. Not to mention the microbiome we all carry around with us: 100 trillion microbes live on or in each one of us: only 10% of the cells we carry around are our own. Most of these colonists are benign, but a few species are opportunistic and will invade our territories when they can. Plus there are viruses around and on us, too.

Coming home after surgery with a catheter and fresh incisions meant thinking about infection. In the weeks leading up to surgery, I had been reading a lot about microbiology and the colony creature we call a human being (start with 10% Human, by Alanna Collen if you want to know more). Fascinating, sometimes a bit scary, but also a great incentive to wash your hands a lot — particularly good advice during this pandemic that I hope I remember to carry through afterwards.

Having pets who were used to sleeping on the bed with us made me cautious about my own sleeping arrangements post-surgery. Last thing I wanted was a cat or dog scratching at my night bag, or the catheter tubing. Not to mention the highway for their bacteria the catheter would be. And then there was the prospect of an animal sleeping on me, or against me when I had limited mobility and a lot of very tender areas.

We decided I’d sleep in one of the spare rooms — Susan’s room with the pull-out couch-bed where our few guests stay. My own work room was, of course, made even smaller by the large collection of books that both lined the walls and covered a fair percentage of the floor. Sleeping in another room would also mean that I would not wake her if I tossed and turned at night.

While I was in hospital, Susan made up her room and the pull-out bed, ready for my arrival. For at least the next few weeks, this would be my sleeping quarters. She thoughtfully made a place for the inevitable pile of bedside books, and placed a reading light nearby.

*****

I left the hospital shortly after noon. The drive home was, itself, rather trying. Every pothole or sharp bend brought a protest of pain from my innards, or along the tender line of flesh held together by metal staples.  But Kevin got me back in one piece. I was relieved to be able to walk into my own home again.  Susan and Bella were glad to see me; the cats I’m not so sure. Such is their nature.

First order of business when I arrived was to get the kettle on and a cup of hot tea brewing. Damn, but I missed good tea. I slowly walked around the house, making my glacial way upstairs as Susan carried my bag into our main bedroom to unpack. Going up and down stairs tended to aggravate my urethra, so once I got into the bathroom I applied a liberal coating of Polysporin to the catheter tube and around the urethra to both protect it from infection and to help lubricate the tube. It helps, but frequent re-applications are recommended.

I got a chance to look at my scars in the mirror, too. Ever seen any Frankenstein movie? My abdomen might have made a good model for some monster’s reconstruction. I could count about 18 (16?) staples in my abdomen along a puckered red line. I had obviously had my groin shaved around the incision, too, which looked a bit odd but didn’t bother me otherwise. There were other inflamed scars to see: where the laparoscope and the Hemovac were inserted, as well as some odd bruising and marks from unknown machinery. I gently dabbed some Polysporin on the reddest parts.

I already had two future medical appointments booked: one in a week’s time to have the staples removed locally, the other in two weeks with the urologist to have the catheter removed and discuss whrogpat to do next. I didn’t anticipate much distress from the former, but the latter made me anxious. I’d had a catheter previously and the removal was a rather unpleasant memory. Like having a golf ball dragged through your urethra. plus there was the question of “did you get it all?” I wanted to ask.

By now, I had shed my anxieties about immediate mortality if not about my future prognosis. But since that had to wait for at least two more weeks, I concentrated on how to live day to day under these new and challenging conditions. I had to be careful and conscious of every step, every movement. Where my collection bag was and to be sure it was firmly attached had to always be foremost in my consciousness.

My experiences, of course, may not match your own if you go through any of this, but perhaps they will provide some guidance. As Catullus wrote,  diversae varie viae reportant (different and varied are the roads that carry us back: Poem 46)

I had received a three-part prescription: for a stool softener, for antibiotics (to be started only the day before the catheter came out)  and one for strong painkillers, which I ignored. As I related in the previous post, I had no interest in opiates. If the Tylenol couldn’t manage the pain sufficiently, well then I’d just have to feel it. Susan went to the pharmacy and brought back the first two.

Once home, my daily life revolved around a combination of my sore abdomen and the catheter. How I walked, moved, sat down, ate, read my email, petted the dog — everything was done with their possible effect on these two areas. You learn to bend or sit up slowly, making sure your abdomen isn’t too stressed and the catheter doesn’t bend or push too much. How you sit — the catheter runs through the perineum — is something you calculate every time you lower yourself. Cushions and pillows get used a lot to help reduce the pressure. If you cough, you have to hold your abdomen (with a pillow or cushion is best).

Walking requires conscious thought, too. You always have to be aware of the collection bag and its fullness. You also need to be aware of places where you can hang the night bag when you’re washing, brushing your teeth, filling the kettle and so on. And you need to stay aware of having hung it, so you don’t try to move away without picking it back up. Having done this previously when I wore one, I was only too aware of the pain this would cause if I forgot. 

A full leg bag tends to pull the catheter, causing irritation (re-apply the Polysporin!), so I would try to empty is as often as possible. Bending or sitting could often squeeze whatever was in my bladder into the bag, so I needed to watch that, too.

My gut was red and bruises started to show around the incision and entry points. My testicles were like a bag of red watermelons, although not particularly sore despite the swelling. Their swelling decreased daily. However, even a light touch of the abdomen made some of the tenderest spots cry out.

Top of the to-do list was to set up the bag-change routine for the catheter.  The night bag was removed and swapped for the leg bag every morning. I took it off while standing in the shower stall,  rinsed it while showering, then attached the leg bag after I had dried a place for it. At night, I reversed the process, standing in the shower stall again to catch any drips. I rinsed and cleaned both bags every time. Every couple of days, I removed the tape from the catheter end and replaced it on my thigh to ensure the end wasn’t moving around too much. Such movement was a source of irritation to my already raw urethra (and applied more Polysporin).

I also needed to be careful about the spigot and the connection, too. The connection to the catheter has to be firm and solidly inserted, and the spigot fully closed. It’s easy to neglect both, or catch a spigot on clothing, and have the embarrassment of urine flow down your leg.

I took some time to select a couple of dozen books for my bedtime reading, stacking them on a footstool beside the pull-out bed within easy reach . I also made sure I had an iPad or laptop available on table tops where I could use them either standing or sitting (I found I mostly stood to check email or FB for at least the first week). 

The larger night bag has to be stored at or close to ground level for the gravity collection to work properly. Susan found a plastic pail I could hook the bag onto, that would help prevent accidents like not closing the spigot properly or stepping on it. But I was still restricted to sleeping either on my back or one side because of the drain taped to my thigh.

One of the greatest joys of coming home came the very first night when I permitted myself a few ounces of wine at dinner. We’ve long enjoyed a glass of wine before dinner, often sitting outside in the later afternoon, reading together. I’d missed having that glass and the quiet comfort we shared.

As I wrote earlier, constipation dogged me after surgery, despite all the stool softeners, and I felt bloated. I had Susan pick up a gentle, water-soluble laxative to get things going. It certainly helped (as did my daily diet of museli for fibre doused with kefir for probiotics). What with my abdominal muscles sliced for the operation, and the staple-held incision, I had to avoid straining in case I would split a seam. The RestoraLax took a couple of days to work, but when it did, the relief was palpable. I now know why babies laugh and giggle when they have bowel movements.

Just over a week after surgery, I went to the local St. Elizabeth’s office to have my staples removed. The nurse was friendly and efficient. The whole thing took only a few painless minutes. She applied Steri-strips over the areas where staples had been removed, to help the flesh continue to mend. Having the staples out make it easier for me to move, but looked worse than it felt. There’s not way to make such an incision look pretty.

Our dog, Bella, started to show signs of depression and became listless with a day of my arrival, with her ears down and tail between her legs. She couldn’t understand what was happening: we slept separately, she got walked by Susan alone,  I couldn’t play with her or chase her around the house (a favourite pre-surgery game). After two days of her moping, I decided to allow her to sleep with me. Almost immediately she brightened and perked up. She got even better when I was able to walk around a single block with her and Susan in week two.

Most of week one I stayed housebound, regaining mobility and confidence, reading a lot and drinking cups of green tea and water. I went up and down stairs, did some light housework, but didn’t overdo anything. I sometimes movied outside the house to the back and front decks where I would sit with my tea, a stack of books and Bella (Susan, too, of course, when she wasn’t at work). I walked around the house, going up and down stairs all at a leisurely pace designed to irritate my wounds and urethra as little as possible. With Susan at work most days, I sat and read for many hours, getting up to drain the leg bag and refill my teacup.

I was quickly able to do some of the daily housework and take a load off Susan: feed the pets, load and unload the dishwasher, even cook a few dinners. Slowly, of course. Sometimes in comically slow motion. I still stood upright when checking email or commenting in Facebook. Sometimes sitting was a pain. And drinking tea led to a full leg bag rather quickly, so I was always having to drain it. Trying my best to get back to the normal routines of daily life. By the second week, I was far more agile, but still moving in that old-man way I groused about previously.

Two weeks after surgery, I was in the urologist’s office assessing the results and having my catheter removed. The doctor was fast and efficient in getting “my little friend” out of my body. It was painless and less uncomfortable than previously. Still it wasn’t pleasant. If I had been a prisoner of war, I would have told him everything I knew if I had been threatened by a repeat of the process. But I was sure happy to have it gone. 

We had already prepared somewhat for the removal by purchasing diapers  and liner pads (why do Depends show a 30-something guy on their cover wearing them instead of an old fart like me?) for me to wear after the removal. The prostate is a significant bladder control organ. Without it, men need to develop their generally under-utilized pelvic muscles to control the flow of urine. I was somewhat aware of the necessity to practice Kegel exercises to strengthen my pelvic floor, but had not had the opportunity to do so yet (you’re not supposed to to try them if you have a catheter).

My advice: learn to do these exercises and strengthen those muscles now, BEFORE you need to. You’ll leak less, and you’ll recover sooner after prostate surgery. Even a few minutes a day will make a big difference if you find yourself in my situation.

It’s not that the exercises are painful or even very difficult: it’s just that it takes weeks if not months of practice to control the incontinence. And here I was on day one with a faucet that leaked merrily into my diaper. And a sore urethra that still smarted with every contraction of my pelvic muscles. Now I know why babies cry when they’re wet.

It took a day for my urethra to stop smarting. The first day I had no control over my bladder at all and went through several diapers. By day two, I had only minimal control, but it was getting better and I was trying those Kegel squeezes at every opportunity. Although I wore diapers the first day and night (and a good thing, too), I was able to use a smaller liner pad by the middle of day two. Diapers at night, pads by day was to become the norm. Infinitely more comfortable than a leg bag and catheter, but still a stark reminder of my condition. I suspected it would be weeks, if not months before I’d be able to go out without some sort of protection.

One problem I hadn’t expected was telling when my bladder needed emptying. I found myself waking at night with a sense of unease, but no real indication why. So I’d get up and go to the bathroom to empty my bladder, then go back to sleep. Without the prostate to tell me in louder terms, I didn’t recognize the subtle signals that the bladder sent until it became uncomfortable or I started leaking. Something I have to attune myself to recognize in future. 

The prognosis for my future was, well, mixed. The doctor said it had been a difficult time trying to get it all and suggested there may be cancer remaining. But for the next six weeks, I’d have to wait to discuss any possible treatment. Then I’d get more tests and that would help determine my future. I had in mind the story of Jack Layton, the much-admired leader of the NDP, who had recovered from prostate cancer only to succumb to a second cancer and die. As the CBC story noted:

One diagnosis of cancer can be overwhelming, but the effects are compounded psychologically with a second one, says Dr. Tony Finelli, a surgical oncologist at Princess Margaret who specializes in urological cancers.
“One of the common things I see when patients are diagnosed with cancer is they go through a phase of insecurity, instability, not having faith in their body, feeling every little twinge and ache as a possible manifestation of a recurrence.

So for the summer, I’ll be slowly getting back my strength, my mobility, and my continence. Exercises, more walking, learning to control my bladder, getting back to normal at a slow, but steady pace. And then I’ll go back to the urologist and learn my fate. Will I be free of the cancer? Did it spread? Will I need more treatment? Will I, like Layton did, face more trauma? I’ll follow up with my story when I know more.

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