Thursday 22 September 2022

I was a hostage to pain

Pain was a deafening cacophony

My remembrance of this day thirteen years ago seems to be a constant rewrite of an event I have written about almost every year on the 22nd of September because it was when I was admitted to the hospital for the treatment of AIDS presenting as fungating tumours prominently on the sole of my left foot and starting to manifest on my right sole.

The fungating tumours were Kaposi’s sarcoma, an aggressive skin cancer that without treatment could quite easily kill you off, if not for its metastasis, the pain can reach such unbearably significant levels, you might as well give up.

At the time I was admitted that Tuesday morning, the only way to alleviate the pain I was suffering was to keep my foot up, for if at any time, my foot went below my waistline when not on the hospital bed, the surge of pain was such that I winced, sometimes bellowed, and definitely cried. The strong painkillers I was on did not seem to arrest any of the pain.

Sometimes, pain does not respond

I was put on a morphine patch, but within two days, it was interfering with my digestive system, I could not keep my food down. Eventually, oxycontin seemed to work, though the nurse thought I was demanding more dosage than was recommended. Unfortunately, there is no way of measuring pain apart from what the patient tells you of how they feel. Much as I seemed to have a rather high pain threshold, considering how I have suffered before admission, I was in quite excruciating pain.

The admission brought me under the best medical supervision you could find for the treatment of HIV/AIDS in the Netherlands. The consultant spent considerable time with me, explaining what they understood of my condition and how it could be treated on the proviso that I could tolerate the treatment and consequently pull through. He also estimated with the progression of the disease, if I did not respond to treatment, I probably had 5 weeks to live.

Laughter for pain to go

Pain itself can drive you delirious, for when I left the hospital, I was on 4 different types of painkillers, each addressing a different centre of pain, the more critical one was the pain of cancer for which I was prescribed Fentanyl, and it was to deal with the pain, but I was still in pain. When I told my consultant, after surmising that it should have been sufficient, he doubled the dosage and that worked.

Yet, there were other lessons I had to learn, the Fentanyl patch was to be applied to the skin and I had it on my chest, the smooth part of my breast, but I did not know it could fall off during the 7-day application, and it did one Sunday as I returned from church. The pain came like a torrent on a vengeance, I had only one immediate solution whilst I waited for the new patch to kick in. I laughed deliriously, my ex-partner staying with me and caring for me, thought I had lost it.

The laughter was releasing endorphins and that was reducing the pain, not totally, but sufficiently. When my nurse came the next day, she said, I could get a skin patch with adhesive to keep the Fentanyl patch in place. How I was not told that before, I cannot tell.

Getting off the pain medication

By January, the cancer lesions had totally disappeared and in its place was pinkish fresh and tender skin once the necrotise skin had been cut away. It was not until April that the pain had totally gone, but I had to wean myself off the patch by halving it and keeping it on for twice the recommended dosage over another 3 months before I was totally free of painkillers.

I can only write of my own experience of pain; it was the only thing that occupied my consciousness for most of the first week in the hospital. Once I began to take my mind off it, I could also begin to see beyond my plight, I learnt a lot about understanding what facing death was and how much the body seems to endure, for strength and resilience do come from somewhere and now that you might have trained up for it.

I blogged through the time I was in the hospital, and the first blog I wrote was In hospital to kill the pain, and kill we eventually did, but it did not come easily, it told radical treatments and close to 6 months. That I am writing that story in another guise 13 years on is a testament to the human story. Many moments of pain come in to upset us, but with the passage of time, they can become just a memory and one for which one can be exceedingly grateful for coming through.


Blog - Reflecting on 20 years after an HIV-positive diagnosis (2022)

Blog - One Tuesday morning in September (September 2021)

Blog - A decade from AIDS to life and living (September 2019)

Blog - Hospital: Testimonies and phlebotomies (September 2016)

Blog - A certain death from cancer loomed large (September 2015)

Blog - In hospital a year on (September 2010)

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