A physician’s journey beyond radical prostate surgery, part III: Christmas day with a leg bag

NotSureGraeme Rocker is a professor at Dalhousie University in Halifax

 

 

Editor’s note: Part I of this series appeared as a Humanities article in CMAJ; part II appeared on CMAJ Blogs.

Days 1–4

Early days at home, with no major events until day 3. I simply could not get warm. It was the same on day 4. My extremities felt like blocks of ice coupled with which I had persistent cramps in hands and feet that wouldn’t shift. It finally dawned on me that this might be carpo-pedal spasm in a setting of some subconscious hyperventilation caused by overall discomfort. Whatever the cause, it was a lousy way to spend a day.

Day 5 Intense bladder spasms coupled with colonic gas distension pain made for, if not the worst pain, certainly the most discomfort yet. I don’t know if there’s such a thing as a horrible orgasm, but a bladder spasm in the early stages must come close to it. It’s a foul experience and for 5, 10, 15 seconds you pray for relief from an internal surge of gargantuan proportions and thank some deity when it passes.

Coughing — and sneezing — in the early days was hell. I can’t imagine what this would be like for someone with COPD or bronchiectasis. There would undoubtedly be many times when they’d wish they’d never opted for surgery.

Days 6 and 7

I feel a profound enfeeblement — an astonishingly powerful desire to sleep that persisted for two days. I had traded bladder spasms and colonic pain (both less intense and less frequent) for profound fatigue and a desire to just disappear into my contracting solitary world.

Days 8–10

A turnaround. I felt more human from the moment of waking and a lot less feeble. I’m no fan of Australian Shiraz and on day 9, it never tasted so dreadful; tea, coffee and vanilla yogurt all tasted better, and I was mentally sharper. “Too much clarity, not enough claret,” as one wag from the UK put it. There was yet one more afternoon of fighting some knot somewhere in 20 feet of small intestine, and I still had to get gas up through some repetitive belching. There were some definite improvements in the contours of an exaggerated part of male anatomy where fluid collects, and this meant I could walk my exercise route somewhat less bandy-legged. Christmas Day was day 10, and we settled for a simple chicken dinner. This was my first decent dinner-plate–sized meal in 10 days. Wine was still a no-go though. Never in my life had I imagined I would trade wine on Christmas Day for a leg bag.

Day 11 and beyond

We’re counting down to absorbent underwear. Over the past decades, I’ve played rugby with ex-internationals at medical school, won trophies at rowing regattas and run comfortable sub 90-minute half marathons in my late thirties. This summer, I cycled 50 kilometres in low gear against a brutal headwind on the Magdalen Islands. In two days time, I slip into incontinence underpants. How my world changes! I’ll hope for some return of normal bladder function and figure out my new role as a gelding in due course.

Reflections

Contrary to our institution’s branding, I didn’t recently enter a “world-class haven of patient-centred care.” I was sickened by how meaningless and even mocking this mantra seemed at times. I entered an old facility in physical decline. Nevertheless, there were pockets of excellence as there are in hospitals everywhere. Being a patient has brought a wealth of potential solutions to light for issues that fell well short of excellence — solutions that are definitely within reach, whatever the physical state of our institutions. Let’s get back to creating relationships between health care teams and patients and families whose paths will cross even on short journeys like mine. Three exemplary physicians and one particularly helpful nurse stand out in all of this, as does the team in the urology clinic. They know who they are, and I hope they know that I will be eternally grateful for their genuine, competent and compassionate care. As for the rest, it’s time to take stock and go back to the drawing board.

Suggestions:

  1. Kindness and caring. This is all it takes. We have to stop squeezing the care out of health care.
  2. A hospital floor should maintain responsibility for and provide access to a patient for a minimum of several hours (perhaps 24) after discharge. In our institution, none of the information about recent surgery and complication would be available to new clinicians in an already over-crowded emergency department in a different building. This simply sets up greater risk of medical error.
  3. Ward staff should indicate to others on the same shift that a waiting family member needs to be told when his or her loved one is admitted to the floor.
  4. Provide spouses or any key individual with some simple beeping device so they know when their loved one is back in the land of the living so that they need not spend hours in some soulless waiting room. Restaurants do this; why can’t hospitals?
  5. Check the integrity of the call-button circuit at the start of shifts; when patients arrive on the floor, check that they can reach the call button.
  6. Give patients the equivalent of some kind of road map of clear and reasonable expectations for their particular procedure or clinical course against which they could compare what actually happens. This could be the basis of post-discharge quality control that could be supplemented by a well-conducted interview leading to feedback to the relevant clinical team.
  7. Repetitive requests to rank pain on a scale of 0 to 10 become increasingly irritating (even though I appreciate that this scale is deeply entrenched in practice). If nurses only respond when pain is greater than 5, why not limit the options? Perhaps: green light = I’m OK, orange = getting close to needing something, red = need something now.
  8. Rather than focus on CPR status, why not enquire first about who would be welcome as a visitor in a post-op setting and who might not? A simple sign on the door or curtain would work.
  9. There needs to be a rebalancing of time spent at the bedside versus time spent in documentation (i.e., finding time to care).
  10. In a time of nursing shortage, ward managers should emerge from their offices and join forces with colleagues on the floor, and make meaningful contributions to the care of patients. The last thing we need in health care is more bureaucracy.
  11. Patients should know ahead of time that they will be subjected to repeated and identical questioning at registration counters (radiology/ blood taking), by surgical secretaries, by the pre-op assessment clerk, nurse, anesthesia nurse, anesthesia tech and then finally by the one person who really needs to know: the anesthetist. I was easy; all the answers were no or yes where they needed to be. For someone with comorbidities and a medication list as long as their arm, this would be a nightmare. I was beyond frustrated that no one feeds any of the information they obtained to anyone else. The solution is simple: all this important and relevant information could be embedded in a chip on a health card that is immediately accessible to those who need to see it.
  12. No health care professional should assume that that they meet any level of quality of health care unless we are prepared to welcome feedback from the very patients we serve.
  13. Registration clerks need to think before they say “Have a great day!” to a guy on the way to a prostate biopsy.
  14. And talking of prostate biopsies — it’s a brutal experience, and hospitals should provide the means to monitor patients after conscious sedation. With the feeling of a broom handle being wrenched around in the anus, it is nothing short of medieval otherwise.
  15. Recipients of recent bone scans should know they will be invited by US border guards to a small room to explain themselves. I was radioactive; luckily, they saw the humor in it!

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