Fentanyl Appearing for Pain, Pills, and Policy

Within the depths of pain

In some ways, I probably have a very high pain threshold, but in late 2009, my pain tolerance was completely overwhelmed when I had cancer in my left foot, with fungating tumours and blackened skin lesions, both deadly and deathly.

Standard painkillers (paracetamol) and stronger medication (tramadol) failed to relieve the pain. It was so intense that I could not put my foot down without crying. In the hospital, I was given morphine, but that only lasted two days before I was vomiting everything.

The Search for Effective Pain Relief

Then came OxyContin, but I was not given enough of it. The nurses seemed to be rationing it even as I begged for relief. However, when I was discharged after 18 nights in the hospital, my pain medication was adjusted. Multiple types of pain relief were administered to target different aspects of the pain.

Paracetamol, oxycodone, and a fentanyl transdermal patch; all that, and pain still persisted, sometimes taking centre stage. I resorted to almost hysterical laughter to release endorphins as a form of palliative coping.

After another consultation, I told the doctor I was still experiencing pain. In his view, my medication should have been sufficient; it was not. He doubled the dose of the fentanyl patch, and only then did I achieve what might be called pain relief.

The Path to Recovery

I was on pain medication from late September 2009, and by the end of January 2010, the tumours were gone. I had fresh, pink skin on the soles of my feet, a miracle of medicine, but it involved gruelling treatment, including chemotherapy and its dreadful side effects.

The pain had gone by March, so I removed the fentanyl patch. Big mistake. I salivated excessively, spat out mouthfuls of saliva, and became severely diarrhoeic. I had to reapply the patch. From this, I learned I needed to wean myself off it gradually. I kept it on for twice as long while gradually reducing the dose by halving the patch at each change.

It took three months to fully stop using the patch, long after I no longer needed any sort of pain relief.

Understanding Fentanyl's Role

Without fentanyl for this level of pain, life would have been unbearable, almost not worth living. One day, the patch fell off. Not knowing you could cover it with a transdermal sticker or plaster to keep it in place until the new patch was ready, I was laughing deliriously. My friend thought I had lost my mind; it was a protective mechanism. If I hadn’t been laughing, I might have been dying from unbearable pain.

Today, fentanyl should only be taken under medical supervision. I also understand that not everyone has experienced the severe pain I did, nor have suffered the otherworldly pain others endure; my pain was eventually brought under control, subsided, and disappeared entirely. I consider myself extremely fortunate.

My body became so accustomed to fentanyl that I couldn’t simply stop using it. It took willpower and determination; perhaps a rare gift. We all have different physiological responses. I am not seeking praise for that.

A Broader Perspective

Beyond the need for medication for chronic pain, there are issues of susceptibility to addiction, both requiring a sensible, empathetic approach under medical guidance across a broad spectrum of related conditions.

Regarding fentanyl as a narcotic, I feel ambivalent. People don’t become addicts solely by enjoying sweets; there are complex circumstances that I believe cannot be addressed purely through criminal justice.

Labelling fentanyl as a weapon of mass destruction would be narrow-minded and lacking understanding of human suffering, especially in pain management.

Learning from Recent Experience

My perspective is personal. I am cautious with medications, aware of their addiction potential. Recently, I used codeine, which converts to morphine in the body, to manage penile and urethral pain during the fourth week of radiotherapy for prostate cancer.

Prescribed to be taken up to four times daily, I rarely exceeded two tablets a day. After three days, I only took one tablet at night. I still felt pain and discomfort, but consciously avoided the lengthy process of weaning off codeine once my body adjusted.

As long as those who truly need such pain management are not disadvantaged by misguided policies, I hope this decision by the White House does not, in pursuit of an ideal, create suffering for many who simply seek relief.

Pain in my blogs

Blog - In hospital to kill the pain

Blog - Getting off the pain train

Blog - Generally responsive and dealing with pain

Blog - Stronger medicine and another course of chemo

Blog - Boldly tell your doctor everything

Blog - Off and back on the pain patch

Blog - Opinion: Where addiction and tragedy can confuse issues

Blog - Knowing pain is personal

That unwelcome discomfort from youth came visiting today

A familiar and rotten feeling

To date, I have never had a proper diagnosis, it is something I have suffered from juvenile times that I need to find a stop to. The stomach/abdominal pain that comes in waves with little in terms of relief can continue for up to a day. Usually starting early in the morning and continuing with moments of respite throughout the day.

Blog - I remember this tummy ache – (October 2007)

Blog - The pain is a long story – (September 2023)

It can be exhausting and the most I can do in terms of remedy is lie on my belly cushioned over a soft pillow and drink lots of sweet and milky tea. This might be accompanied by bowel movement or vomiting, which it was today, but it just adds to the discomfort of it all.

The thoughts that ran through my mind as I writhed with pain in my bedroom midmorning without the appetite for any ingestion even of pain relief, I would hate to consider again. I seem to have learnt to endure the pain with the hope it soon subsides.

The need for more rest

As I write this blog, even though I believe the worst of it is over, the muscles of my stomach seem to retain a memory of the suffering I endured with a foreboding that it might creep on me again. Thankfully, the pain associated with my waterworks post-radiotherapy has literally dissipated.

When I lay on the sofa in the living room, I passed the time away with old playbacks on YouTube of The Love Boat and Fantasy Island. Between the grimaces of pain and the comfort that interspersed today's main event, I did not even notice that we had some rain.

I think I’ll be fine for the rest of the day. There was no indicator as to why this ailment took hold today. I am glad it is over, and it is evident that for all the strength that I think I have regained in my first week of recuperation, I really do need as much rest as I can get, and I have not got nearly as much as I need, so far.

Holding sway in the kitchen

Loving the kitchen stage

The kitchen is a theatre, a place of deep expression, where practice and application bring forth snacks or feasts for sustenance and even celebration.

I enjoy being in the kitchen, that work of bringing together ingredients, some never imagined co-exist to become something that excites the tastebuds and sates both appetite and hunger.

Invariably, I love cooking, usually for myself but more to share with others, not large proportions for a party, just enough for a few at a table, a full course with wine with Brian is even the greatest pleasure I indulge.

When nature calls

Recently, I found myself rocking from foot to foot and remembering the times in Cape Town when my need to find relief just seemed to coincide with when I was in the middle of getting things done. At this point, I want to rush before my bowels burst and I wet myself, just as I feel I cannot stop what I am doing.

Brian has now cottoned on this strange situation as someone being pressed who needs to suffer than be succoured. Whilst it happens almost unawares, I have sought the discipline to conceal this call of nature until after it has been answered, my returning to the kitchen grinning knowing I have escaped duress. I have to master this first at home, but I have not.

Maybe what I really must do is ensure everything to the ablutions is done before I start anything in the kitchen. Curbing my enthusiasm to start and giving myself the consideration of relief before recipe might just be the best thing to do.

Thought Picnic: Nothing matters more than sleeping well

All worked up

Yesterday morning full of anxiety bordering on trepidation, I wrote about the prospect of going to the hospital alone to commence a regime of gruelling treatment I was not particularly prepared for.

The outpouring of goodwill and best wishes with prayers, encouragement and support was overwhelming and wonderful, friends called, messages came and I prepared for my day ahead.

Each time I met a consultant over the last three years, they all talked about new drugs coming on-stream but punctuated everything with the element of cost. There were more affordable mainstream treatments that could last a whole year with significant side effects and that was what was on offer.

The prospect of subcutaneous injections was as terrifying as it could get, hypodermic needles have punctured enough holes in my epidermis, phlebotomies for vampires’ conventions, intravenous chemotherapy, intramuscular injections all those I could abide, but I have always drawn the line at pitching the flab of my abdomen for ingress. Find another place, I screamed when a nurse attempted to administer my nightly anticoagulant through my stomach wall when I was in hospital almost 7 years ago.

All mixed up

The plan was to get to the hospital, visit the pharmacy and collect my medication, then go up to see my consultant before I faced the abattoir, like a sheep for the slaughter, that was the imagery fully formed in my mind.

At the pharmacy, they had mangled my name on the prescription. Can you imagine, drugs worth tens of thousands of pounds and they got that wrong? Anyway, at least, the date of birth remains what it always was and that was fixed. A package containing a bottle of pills and up the stairs to my fate.

At the weighing station, a seat built on a scale, I had lost 2 kilogrammes and my blood pressure though normal for my condition could do with some notching downwards a bit. Time to visit that gym in the basement again.

All loved in

Suspense built up when I was called into a consulting room, “We’re giving you the best drugs on the market.” She said. I was not sure I heard her correctly, but I did not interrupt her as she went through dosage, side effects, emergencies and other protocols. “You seem a really nice gentleman.” She said, towards the end.

When I finally caught on what was happening around me, I asked when I was getting my injections. There were no injections, my terror dissipated in a puff. I almost cried, the relief! Never had one faced the prospect of something seemingly so grave at the hospital to be met with the desire to leave the hospital skipping away.

Probably it was not what I said before but the story in my blood work, the indicators showed the best improvement in 11 years apart from the urgent need to tackle the other condition, it made me a prime candidate for the new line of drugs and that was what I was offered.

All slept well

As I left the hospital, I hopped on a bus that was like an adventure into the wilderness plying the longest route to my destination. I did not even know when the bus was going the wrong way, the driver had to turn around, it did not matter one bit to me.

Most importantly, I had to rid myself of that morbid feeling of vulnerable incapacity that had invaded my zest for life and begin to look ahead to living and living well. In the midst of this, news came that I had been recalled to the place where I had concluded a 25-month contract just over a month ago.

I think it is the support and prayers of my many friends that turned a difficult day into a different and wonderful experience. How did I celebrate this? I got myself an original Tempur® pillow, in everything, nothing matters more than sleeping well. So far, the first night on the new medication, I feel fine.

Thanks for all your messages, prayers, support and encouragement. I’m happy.

Globalisation of disaster relief

Weapons of Mass Relief

One could not help but wonder at the complete inadequacies of developed, developing and under-developed countries (used in the context of 3^rd-world dialogue) in dealing with the natural disasters that have hit their peoples in the last few months.

To surmise, one can see the sweeping global phenomena of globalisation, trade liberalisation, democracy and eradication of poverty through debt forgiveness and other do-gooder mechanisms have overlooked pertinent issues.

This is made ever so stark from the fact that “so-called” Nuclear powers with hefty defence budgets to defend the realm have forgotten that there would be no realm to defend if the citizenry of the realm have been wiped out and left destitute by natural disaster.

More so, these countries have their military forces pre-occupied with unnecessary wars and disputes that seem to foster more havoc than peace with their presence.

The political landscape is both littered and cluttered with intransigence and belligerence that make the Middle Ages seem rather tame.

What has happened to the civilisation of humanity that puts these quests for military aggrandisement over the welfare of its peoples?

We have come to cross-roads, is it weapons of mass destruction in the hands of the powerful or weapons of mass relief from the powerful to the weak?

I hear no leaders speaking up for this.

In the end, the global co-operation needed for attending to natural disasters should involve allocating part of the defence budgets to relief where Africa hosts relief materials for immediate despatch to Asia and Europe, Asia for America and Europe, Europe for America and Africa and so on.

This under the co-ordination of the UN or some other International body like NATO should despatch with immediate effect when disaster strikes at their support areas.

Military weaponry as drones, satellites, recognition and surveillance systems should come in to play to identify the worst affected places and assets brought to bear.

That would be global progress very much in the light of the establishment of the UN.