The Cancer Diaries, Part 3

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offThe operating room was cold. Not merely cool: winter cold. In my thin hospital gown, I felt the chill and shivered a bit. The nurse told me it’s kept cold to help discourage bacteria from thriving. I wanted to ask her about this, to chat about bacteria and their lives. I’d been reading about microbiology and the microbiome a lot of late, so I’m curious. But this was not the place or time.

I was helped onto the table, and a warm blanket wrapped over me. Very comforting. My arms were splayed out from my body on small side panels. I wanted to make a joke about crucifixion, but couldn’t find the words. Didn’t matter, because my mouth was covered with an oxygen mask. Someone I couldn’t see told me to breath. A nurse told me she would remove my underpants and return them with me to my room. Sigh. There went my last shred of dignity.

On my left, the anesthesiologist was putting something into my IV. I tried to look around, to see what’s happening, and then…

.

.

.

I woke up. Suddenly. It’s like that: you fall asleep without warning on the operating table and wake up abruptly sometime later in another location. I fell into the black hole of consciousness and came back on its sharp edge.

I hurt. A lot. This must be what it’s like to be gut-shot. My body, my abdomen was so very sore, so deeply sore. I tried to breathe slowly, measuring the pain by breaths. My walnut-sized prostate was gone, but for such a small organ, it made a big pain in leaving.

There were nurses and the doctor around me. I might have spoken, asked questions, said something, they may have spoken to me, too, but I don’t recall much of that initial period. They may have given me painkillers. The anesthesiologist had warned me there might be a gap after surgery, a time when I would be lucid, but not forming memories. I vaguely recall being wheeled from the recovery area along a corridor to my room. The pain dimmed to a dull discomfort, no doubt thanks to the pills.

Doctors and nurses will ask you about your pain somewhat frequently. They have a scale of 1 to 10, where 10 is the most unbearable. It’s entirely subjective, but that’s how they determine what medication to give, or perhaps what additional medication, since they already have a regimen of painkillers and anti-inflammatories scheduled. I was around 4-5 after the surgery, but gradually the sharpness subsided so most of the time I was 2-3. Sometimes, when I was relaxed and reading in the hospital bed, I hardly noticed it at all. If I forgot and tried to move,  or shift in the bed, however, I got a sharp reminder in the 3-4 range to be careful.

Sure, it hurt, but what did I expect when someone cuts into your body and removes parts? Even the smallest movement brought sharp knives to my body. I told the nurse I’ll accept the basic pain medicine – they hand out Tylenol and Toradol (an anti-inflammatory), but I resist anything stronger, like opiates. I had a dear friend who became addicted to opiates when taking them for serious, debilitating migraines. I’d seen the toll. I’d rather live with the temporary discomfort. 

Those first few hours after surgery remain in a bit of a fog. Once I was out of the recovery area and in my room, a nurse brought my glasses, and opened my overnight bag to remove the books and my phone. She put them on my table. The doctor came in, told me surgery went well, and that he had spoken to Susan to tell her that news. Sometime around then, I called her, too, although what we discussed I can’t remember. I think I napped a bit, too. If I read, I don’t recall. It wasn’t until early evening that I was fully awake and aware.

I was hooked up to an IV drip and a catheter. Neither is particularly painful, but both can evoke sharp stings if you move too suddenly or twist the wrong way. I was, however, familiar with both: when I had my TURP operation on my prostate some years back, I had had them. The IV comes out when you leave the hospital, but the catheter remains — in this case I had to live with it for another two weeks. My familiarity made it easier for me to accept them.

A catheter is a tube that goes into the urethra from the penis head to the bladder, where it is held in place by an inflated balloon. The tube feels as big as a garden hose, but it is somewhat smaller. Still, the flesh where it enters is sensitive and easily irritated. It stings. The upper end, about 20 cm from the penis,  gets taped to your thigh to prevent it from wriggling about and further irritating the urethra. However, the tape gets loose when you move around, especially when you are mobile (and when you shower), so it’s a good thing to ask for some medical tape to take home to re-stick it every few days.

The other end of the tube is connected to a collection bag via a hose of varying length — very short for the leg bag, and more than a metre for the night (and hospital) bag. It’s a gravity collector, so the bag has to be placed below the penis. Once home, I had to swap the bags daily between day and night use, rinse and clean them daily. Both have spigots to drain them at the bottom.

The point of the catheter is to drain the urine immediately into that collection bag rather than have it stay in the bladder. The leg bag collects about 500 ml, the night bag can hold about 2l. What with drinking tea and water all day, and depending on your level of activity, the leg bag can fill rapidly, needing to be drained at least every hour, sometimes more often. 

Because the urethra wasn’t designed for this piping, it can get sore and even infected, so care is required both in cleaning (once you get home, Polysporin is recommended at the penis head in frequent intervals both to prevent infection and to help lubricate the tube at that very sensitive opening, but wasn’t provided in the hospital). When sitting, the tube runs along the perineum, so sitting can be uncomfortable, even several days after the surgery. When it’s time to remove it, the balloon is deflated and pulled through the urethra. Last time I had that done, it felt like a golf ball was being dragged through me. More on removing the catheter later.

The catheter also served as a reminder that along with the prostate went my sex life. As the satirical penis poem goes,

My nookie days are over
My pilot light is out
What used to be my sex appeal
Is now my water spout

As I was slowing waking up and during my recovery, nurses brought me cups of cold water that I sipped gratefully. My throat was dry and raw from the ventilation tube and oxygen, and would remain so for several days. They checked my vitals, took some blood, asked me about my pain. I had low blood pressure, so I was put on extra saline pumped in at faster rate. The IV pump made very Devo-like sounds for that bit. At some point, a nurse flushed my catheter to ensure proper passage of fluids. After a bit of uncertainty, everything worked as was expected.

At this point, I was feeling fairly upbeat. After all, I was alive and all indications were that the surgery was successful. I still had considerable mending to do, of course, but I would take it as it came. My biggest concerns were post-operation infection, and tearing the stapled incision open (by movement or coughing). I had this image of coughing too hard and firing staples across the room like an upholstery gun. 

Sometime around supper time that first day, I was brought a tray with a tiny serving of apple juice and two little containers of Jello. I had tried to tell several people during the registration and preparation that I didn’t eat mammals, but no one seemed to listen. They told me to tell someone else. There didn’t seem to be a form or even a line to indicate dietary restrictions or choices. I passed on the food.

(I don’t eat gelatin because it’s. extracted from slaughtered animal skin. When shopping, I read the labels of everything i eat to avoid it – even yogurt (yes, lots of companies put meat in their yogurt!). After 48 years of not eating mammal flesh, my gut biome has evolved so I can’t digest animal (mammal) proteins very well: they can cause aches and gas. That’s aside from the ethical resistance I have to eating sentient beings. As a result of my dietary restrictions, I didn’t have any food that night, mostly water and one cup of tea. I wouldn’t get anything at all to eat until the doctor allowed me a more appropriate diet, more than 40 hours after my last meal at home. Good thing I’m accustomed to fasting.)

That night, I slept in short 15-20-minute intervals, with the light on behind me all the time. It was a combination of my pain, nearby noise (the ward was very noisy, in part because a couple of dementia patients made loud sounds), and the snoring of the patient sharing my room. Because of the IV and catheter, I could only sleep on my back, and even small movements of my legs woke me with the sharp pain. Now and then a nurse would check in to give me pills or check my vitals. I would wake up, grab a book and read for 15-60 minutes doze off, wake up, read, until the morning. Curiously, the next day I didn’t feel the effects of sleep deprivation I might have expected.

The next day gave me some time to think about the future. My life had changed and would never be quite the same from now on. I wouldn’t know for several weeks yet whether I would need further treatment, but even without it, I had to consider the necessity of adapting my daily life for the next several months to the new reality: pain, incontinence, diapers, new exercise, slow recovery while rebuilding my muscle strength. Lots to think about, but nothing I could really prepare for until the catheter was removed.

I also thought about mortality again. Everything might turn out fine – I knew at least four other men in town who had undergone the same surgery and recovered. But there as always the possibility the cancer had migrated and might not be treatable. Timothy Leary, Frank Zappa, Dennis Hopper, Bud Abbott, Eldridge Cleaver, Pierre Trudeau, J. G. Ballard, Peter Cushing, James Herriot, Victor Spinetti – a lot of famous men had all died of prostate cancer. Nothing suggested I was invulnerable from that fate. Not to be morbid, but it wasn’t something to ignore. I tried to distract myself with more reading. (In his Essays, Book I, Ch. 20, Montaigne commented, “I want death to find me planting my cabbages,” meaning he wanted to be up and around, doing everyday things until the very end of life.)

The hospital had a TV screen for each bed, but I never used it. I’m not a fan of TV in general – I really don’t like the ads, don’t watch sports, and most of the shows I recall seeing were dreck. We cut cable TV more than a decade ago. Instead of TV, we watch DVDs, and stream Acorn or Netflix shows when we want to see something newish. I had my books – although frankly four was one or two too few for the expected length of my stay. But I got through it with the few I had.

My first real, edible meal was an egg salad sandwich on chewy white bread, served early afternoon of the next day, some 40 or so hours after my last meal at home. I’d like to tell you it tasted great, but it had almost no flavour at all. Hospital food is, I suppose, deliberately bland. For a guy who puts hot sauce on everything (yes, I’ve even put it on ice cream and peanut butter sandwiches), it was pretty dull fare. But I ate it all. Bland described every meal I had there, but I wasn’t there for spa time, so I didn’t complain. I ate what I could, and left the rest.

(I also had not had a bowel movement since the day before the surgery. Constipation is an uncomfortable side effect of this surgery, making food less desirable and the body somewhat bloated. One of the pills I got twice daily in the hospital was a stool softener, but nothing worked until after I had gone home. It’s another of those things we don’t talk about, but should. More on that in the next post.)

The doctor wanted me to get up, to start sitting up and even moving around the second day. That wasn’t easy. Even sitting up was a challenge, and not simply because of the pain and discomfort. I thought it was a bit too soon to get up, and wanted to wait a day, but as Montaigne wrote, “Whatever can be done another day can be done today” (Essays, Book I, Ch. 20) so I made the effort.

I was attached to the catheter and IV, but also to a Hemovac: a mechanical, spring-loaded suction device used to draw excess fluids from the body around the incision. It has a small tube that entered my abdomen and extended into the area inside where the surgery had been done. The nurse emptied it on the second day and re-loaded it to draw more. It wasn’t painful, mostly clumsy because it was taped to my body and as soon as I sat up and tried to get out of bed, the tape pulled away. When I swiveled to my left where it entered my abdomen, it generated a sharp warning pain.

I did manage to get up,  bits and pieces in hand, and get to the bathroom where I could finally brush my teeth (hooray!). After that, I did a few slow laps around the nurses’ station, shuffling with my IV pole in one hand and the other holding the urine bag and Hemovac. I navigated the corridors while trying to avoid the hospital staff racing about. I did this circuit several times. It was a bit exhausting, but I felt a sense of freedom and accomplishment after being bedridden. The return to normal behaviour helps.

My abdomen was sore, sensitive to even the lightest touch. I didn’t probe too hard, but I could feel the bandage over the incision, and the solid edges of the line of staples that ran from my navel to my public bone. There was a scar at my navel were a laparoscope had been inserted, and the puncture where the Hemovac tube was still inserted. I tried to look at myself in the small bathroom mirror, but couldn’t really see a lot.

The following morning the doctor decided that if I could do get up and walk, as little as it was, and since my vitals seemed okay, although my blood pressure was still low, I could go home Friday (the next day) instead of the expected Saturday leaving. I called Susan and my friend, Kevin, to tell them the news. I had mixed feelings about it because while it’s great to get out of hospital, it would put an added burden on Susan to care for me. Plus I was a bit leery about moving around the house where I’d have to walk up and down stairs a lot. Plus I would need a ride home.

That night, I slept most of the time, aside, of course, from the nurses’ visits, the vital sign taking, and the mandatory pills. But it was a much better sleep than the previous night.

All this time, I wondered how Susan was faring, was coping with the added responsibility of managing the cats and the dog with her work schedule. Doing all the daily chores is something we shared when I was at home. Thinking of her alone at night, without me by her side as we always were felt lonely. We’re so very close that it’s hard for either of us to imagine the other alone.

Back to food. During my stay I also got a vegetarian lasagna, although by the time I managed to get up and get someone to bring me utensils, the pasta was cold and as tough as shoe leather. I left most of it (cutting it from a sitting position in the bed was uncomfortable, too). I had a breakfast of Cheerios (which I passed on) with milk (which I drank – at home we go through a litre or more of milk a day) and a tiny, dry, chewy croissant, which I ate. As I was waiting to leave, I was brought a bean dish for my last lunch, which would not have been  half-bad with a few spices and herbs. I had a few mouthfuls. With each meal came a cup of  bitter, tepid coffee that I ignored after one sip. I did manage, however, to get the nurses to bring me a cup of hot tea a few times during my stay.

Friday morning the doctor stopped by briefly to check on me and tell the nurse I was being discharged that morning. At 9:30 a nurse came in to get things going, with paperwork to go over, planning to remove the bits I had to leave behind, including the large bandage, and to explain the night and leg bags I’d have to use at home. But before she could start, she got called away. It was so busy that morning that I didn’t see her for another two and a half hours. I waited. I read.  A nurse had disconnected my IV, although the connector needle was left in my arm until much later. I couldn’t get dressed with the Hemovac attached, so I had to wait until the first nurse returned and removed it. She gave me a brief, somewhat spotty explanation on how to attach the leg bag before she rushed off again.  Fortunately, I could still recall my previous experience with the bags, so I got the leg bag on without issues. There were no instructions about what to do, what to eat or drink, exercise, showers, mobility, or even a goodbye.

Only after the tubes were removed was I able to get up, get out of my hospital garb and get dressed, and pack everything  — all in slow motion, trying to avoid sparking new pains — and wait.  Yes, more waiting. I called my friend Kevin to get picked up, called Susan to tell her I’d be home within a couple of hours. And I waited. I walked a few metres in the corridors, carefully. Then came back and waited.

Eventually a volunteer was called to grab my bag, wheel me in a wheelchair downstairs and outside where my ride was waiting. By this time it was about three hours since the doctor had said I could go home.  But I was so very glad to be leaving.

Next: recovery at home.

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