Thick Skin and the Colour of Pain

A Familiar Ethnicity Pain Gap

It comes as no surprise to me to read that in the UK, women from Bangladeshi, Pakistani, and black Caribbean backgrounds were less likely than white women to receive an epidural whilst having a vaginal birth. [The Guardian: “Women from minority backgrounds in UK less likely to receive epidurals, research finds”]

The ideas, conceptions, perceptions, or prejudices that feed the narrative that non-white people, especially from the aforementioned backgrounds, do not need adequate pain medication to arrest high levels of discomfort and distress have appeared in studies for decades.

This situation, termed the "ethnicity pain gap", is quite concerning, and it might persuade one to surmise that there is a seething racialised disadvantage in the public health system, one that ascribes thick skin to the Black population and precious delicateness to the Asian cohort.

My Own Experience

My experience of this in late 2009 came as a result of cancer pain in its enduring intensity. I was on multiple regimens of pain medication, with Fentanyl dispensed as a transdermal patch being the most critical palliative, yet I was in pain.

When I informed my consultant that I was still in pain, and this was in the Netherlands rather than in the United Kingdom, he did not acknowledge my distress or seek to address it. Instead, his response was that the pain medication I was on should be enough. An ill-informed perception that I should have a higher pain threshold.

I remonstrated that it was not, and he then sought to double the dose from 12.5 micrograms to 25 micrograms. This made all the difference because it tackled the pain, and I got much-needed relief. Why I was not also told that transdermal patches could fall off, and that they could be held in place on the skin with an adhesive film, escapes me.

Knowledge Withheld

Returning from church, one Sunday, a few weeks after I had the new prescription, I was in a lot more pain than usual, and then I saw that the patch had fallen off.

I laughed myself to delirium to produce endorphins as pain relief whilst the new patch took hold. It was only when I told the nurse who came to dress the lesions on my foot daily that he told me I could get an adhesive film to keep the patch in place.

The knowledge was there all along, but it was never shared. As a race, in our encounters with the medical establishment, we are constantly pathologised, and this is characterised by either not being listened to or being ignored, because the medical personnel assume they know and understand our bodies more than we do with the intimate experience of our own skins.

Asserting Our Reality

That Caucasians are immediately responded to and given palliative succour on demand speaks volumes, without suggesting something untoward. Whether it is bias, prejudice, or indifference, we need to be better equipped to ask pertinent questions and persuade our doctors of our reality, without having to jump through hoops, trapped in suffering until it becomes unbearable.

It is not just in matters of pain, but in decisions being made about diagnostic and treatment regimes without explanation or rationale, delay in action when the full knowledge of a condition is evident, the lack of respect, courtesy, and the according of dignity to your personhood and humanity, or the use of the wrong indicators based on race for decision trees towards useful outcomes.

I approach the medical establishment on the premise of “It is my body first, before it is your guinea pig.” This need never be the default, because you are then preparing for a fight instead of fully trusting someone who took the Hippocratic Oath to do you no harm. Yet you find you need to assert yourself and manage the egos to ensure that you, at the very least, leave the hospital better than when you went in.

A Google NotebookLM AI Podcast on this blog

Addressing A Marble-Sized Problem

An Unexpected Medical Crisis

One situation the day before necessitated a visit to the Accident & Emergency Department of Manchester Royal Infirmary yesterday morning. A 30-minute walk home from work took the best part of 75 minutes.

I was tired, shuffling my feet, and enduring discomfort and pain in the groin area. At first, I thought it was tissue bruising or chafing until a shower inspection suggested it might be something more serious. It was hard and needed checking out.

First Impressions at A&E

On arrival at A&E, I observed a patient with what appeared to be two cannulations visible beneath the long sleeve on his right arm. He had come outside to smoke. Whilst I am usually baffled by such behaviour, I am coming to understand that the hold smoking addiction has over people, regardless of their health condition, requires extraordinary intervention to overcome.

The triage process included a referral to the Urgent Treatment Centre (UTC), with a waiting time of about 40 minutes. The nurse at reception who registered me for treatment shares the same birthday as I do, though I was polite enough not to ask about her year of birth.

We both agreed that, through the generations, getting separate presents for birthdays between 21 December and Christmas was a rarity, a trauma carried into adulthood. We had a good laugh about it.

Assessment and Referrals

At the UTC, after exchanging introductory pleasantries, I was examined on a gurney. The assessment indicated that I had a swelling, quite possibly an abscess, and I was being referred to the Ambulatory Care Unit (ACU). By this time, my bearings within the labyrinthine corridors of the hospital had been lost, though following the directions proved helpful enough.

At the ACU, the nurse examined the groin area. In all cases, the nurses were female, and I had no qualms about having my privates reviewed in a medical setting. The abscess was still quite solid and showed no indication of producing pus. However, she did attempt to squeeze it to obtain a culture sample. That was exceedingly painful, but needs must.

Afterwards, she took two vials of blood following a second intravenous insertion and wrote a prescription for co-amoxiclav, to be taken three times a day for a week.

Navigating the Hospital Complex

The pharmacy was located in the Manchester Royal Eye Hospital. The best directions I received came from a helpful porter who said, “Go on until all the signs turn yellow and you're at your destination.” After registering my prescription order (free for two reasons: I have been a registered cancer patient within the last five years, and I am over 60), I went to the toilet.

There, I was able to examine the problem more closely. It was the size of a marble, with a bit of hardened tissue extending from the ball of the abscess. This is medically known as the inguinal region or, more specifically, the inguinoscrotal region. Because the abscess sits within this crease, friction and rubbing exacerbate the pain, affecting the way I walk as I try to minimise the discomfort.

Managing the Pain

Even after taking pain medication, the pain was such that I was almost bent over double whilst walking around my flat. I tried a hot compress last night and plan to do so again this morning. However, I have been advised that if this abscess does not clear up within a few days, I should return to A&E to have it incised and drained. This is not a prospect I am looking forward to.

For now, I am indisposed and taking bed rest, having padded the area with some cotton wool.

My visit to A&E, from triage to collecting my prescription, took less than four hours.

A Google NotebookLM AI Audio Overview Discussion of this blog

Memory Pain

The Familiar Stranger

As I was walking to work this morning, I had the onset of stomach cramps, the abdominal pain I have written about often, which I have experienced since childhood. I don't know what brings it on, but if I remember correctly, I last had this discomfort 14 months ago.

It is different from what you suffer with food poisoning; after emesis and bowel movement, you are usually alright. The other situation comes after a hot shower; lying on my belly cushioned with a soft pillow makes things subside.

Memory and Recognition

This is memory pain, like a visitor you cannot bar from coming round to your place, it comes with a keen recognition, and the way it begins to tire you out is remarkable. For comfort, I take highly sweetened milky tea. It eases but rarely cures; however, some bed rest helps.

Yet, there is another concern. My tolerance of pain is high. I would endure discomfort for longer than is necessary as I attempt to put the issue out of my mind, even when it is becoming unbearable.

Perspective Through Experience

My reflexes have been schooled by cancer pain; any other kind of pain seems almost insignificant by comparison. I would rarely take analgesics because the pain is not deemed that serious.

Though pain is your body telling you something is wrong that needs addressing, I reckon I can bear it and manage. Do not think I treat the endurance of pain as a sign of machismo; it is more a matter of perspective derived from lived experiences.

Dignity and Humility

Eventually, after completing a change request in the office, I decided to leave for home. Walking back, I banished thoughts and images of me just falling in the middle of the street, writhing in pain. Could one be too dignified for such a humbling by sudden incapacity?

I am grateful for one last thing: regardless of the pain I am suffering, I have never lost my sense of humour or my ability to write about what I am going through.

For now, Akin is indisposed and taking a bed rest, looking towards a speedy recovery with a prompt return to verve and vigour.

Pain through the times

Blog - I remember this tummy ache (October 2007)

Blog - Take away the pain (September 2009)

Blog - Knowing pain is personal (August 2021)

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

Blog - That unwelcome discomfort from youth came visiting today (November 2024)

A Google NotebookLM AI Podcast on this blog

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.

Telling new tales again in blood

Just for the blood

I winced in nearly excruciating pain as the phlebotomist tried to extract 10 vials of blood from my veins and was most assuredly doing it from a muscle or tissue in my arm. The flow had stopped early and the wriggle room she found was a bruising stab with push and ease to fill the vials with blood.

This was the most ever that had been extracted for tests since I attended a follow-up consultation for my biannual checkups. In my discussion with the consultant registrar who saw me on Wednesday morning, I presented all my concerns with the results I had been getting for the past 8 months to determine any trends to address issues early.

Before giving blood, I was asked for a urine sample, the colour was richly white wine yellow and not too bad a bouquet, as I explained to the nurse to account for the fact that I had a prostate biopsy a few weeks ago, and this might affect the quality of the urine sample. It was however the most painful blood clinic I ever attended.

Even when they could not find blood and I had been punctured to the effect that I could pass for Swiss cheese, pain was never a component of that experience as this was, the comforting just-a-scratch statement before you are stabbed with a hypodermic needle was replaced with the phrase, ‘almost done’ and there were still 5 vials to go. It was her poor technique and nothing to do with me having latent or actual belonephobia, which could easily induce the fear of medical procedures if I remember the staple gun sound of the biopsy procedure.

Turning up and turning out

However, the day started slowing with what was a night of not enough sleep and as I planned my journey to the hospital, I decided on an easier ride that took me through backroads I have walked many times but never plied in a vehicle. The driver was the first of many who complimented me. The desire to present a sunny disposition regardless of the circumstances remains one I enjoy.

As I stepped out of the vehicle when we got to the hospital, a nurse stopped me in my tracks too and with her compliments said words to the effect, “It is nice to see a gentleman take the time to dress up nicely.” It might be a hospital where we all come to a humbling of our humanity, but that should not mean the absence of humour, goodness, brightness, and something to put a smile on people’s faces. I think my mere appearance did as much for some.

More than miscellaneous

Having printed out my notes from that last visit that needed updating and corrections, we dealt with my health, my welfare, my social situation, the many questions I had, the opportunities for a new line of therapies I was not ready to assume until I had read up on the study. Strangely, medical decisions had been made to include this in our regimen even as Europe, Australia, and New Zealand, along with China and Japan did not have any participants in the cohort study. I had my misgivings.

As I asked for another serum folate check which determines whether I have a folic acid deficiency, another one could not be booked as there had to be a 90-day lapse from the last check in the hospital systems. I then realised that my general practice and the hospital shared the same blood laboratory. The hospital had visibility of all the results, whereas my general practice could only see the results of the tests they had ordered.

The integration and agglomeration of systems cannot come sooner, they need to be reading from the same set of data, not repeating tests to confirm situations. I sought and got an alignment of my pill regimes which had gone askew since 2018 but had me putting in a new prescription for one of them last month because my usual April – October consultations had drifted to November – May, and now is on a June – December biannual cycle.

It was a nice outing to the hospital, not much bruising in my arm and I caught up on much-needed sleep.

Dr Jerry Savelle (1946 - 2024)

A persuasion in pain

My Christian faith has led me on many journeys, in the search of purpose, knowledge, and insight on the issues of life along with looking to understand why we exist and what kind of legacy we might leave, to hope that in the annals of time, our footsteps show sure paths and our deeds are impactful in the lives of others.

In early September 2009, I was in excruciating pain and literally dying from cancer tumours that had consumed most of the area of my left sole and the underneath two of my toes. The only way I could walk on that foot was to bandage it tightly and wear a pair of monk shoes. I had not convinced myself of what remedy for this suffering might be.

Maybe a miracle today

My days and nights were preoccupied with listening to sermons on divine healing as I am also of a Pentecostal inclination; I have followed many leaders of that persuasion in the teachings and revelations they have shared for decades. Skimming through some of the websites of these preachers, I happened upon the itinerary of Jerry Savelle and instinctively, I booked a flight from Amsterdam to London with the view to attend every venue he would be appearing at.

In visiting, I informed some friends who met up for either of the two sessions that I attended, it was also a time of reckoning for me because until then, much as I would have wanted a miracle of healing to deal with this problem, a sense of irresponsibility of allowing my condition to deteriorate to the state I was in quickly dawned on me, because I then found the courage to admit to the seriousness of the disease I had until then kept mainly to myself.

An impartation of sense

Dr Jerry Savelle ministered in two different churches where the fawning of the overseers did not help the setting. The man of God then offered to lay hands on the whole congregation, but I was more like the thronging crowd than the woman with the issue of blood. If I received any virtue, it was commonsense. I did not regret my journey; it just gave me context to tackle an existential threat.

I returned home and booked an urgent appointment with my medical doctor and what followed was a referral, chemotherapy, and a survival which at prognosis if I did not tolerate the therapy left me with just 5 weeks to live.

God is good, always

Dr Jerry Savelle was a raconteur, a man who told wonderfully interesting stories about his Christian walk, he preached and taught about faith, favour, grace, the goodness of God, his motorbike and vintage car collection, his aeroplanes, and the many missions he had in Africa and all over the world. He encouraged and enthused, the titles of his sermons of which I have many just made you want to listen to what he had to say.

In Hard Times God Will Rescue You (YouTube playlist) is one set of 3 sermons he preached in 2022 that I have listened to many times in the last year to find great encouragement during my own personal hard times. Whenever I have needed the lifting up of my spirit and a reassurance of God’s love, I would seek out a message by Jerry Savelle either from my large MP3 archive of messages going back 25 years or a recent online impartation to the body of Christ on his itinerary in recent times.

An exemplary man of God

He represented a man of integrity, principle, purpose, faith, and good humour. He had been mentored by and been friends with many of the great men of faith who have either passed on or are well into their 80s. While I am saddened at his passing, he was a sure example of how to live the Christian life and be an exemplar of the eternal life that now is unto the life to come.

He always spoke fondly of Carolyn, his wife of almost 60 years, his two daughters and his grandchildren, he lived a full, exciting, and wonderful life. I think one quite important thing I learnt from his teachings was God is also interested in the things that bring us joy, be they pursuits or hobbies, as long as they do not distract you from eternal purpose.

He will be missed, but with the body of work in books, sermons, teachings, and stories he left for us, we can be thankful there was someone who showed that the person and character of God is for us to really find out, know of, and revel in the joy of living, knowing Jesus Christ and God the Father.

Cancer: No journey is the same

Cancer humanises us

The news that King Charles III has been diagnosed with cancer brings a sense of shared humanity in its frailty, suffering, mortality, and survival. We are told it is not prostate cancer and it was discovered when he went in for a procedure due to an enlarged prostate. [BBC: King Charles diagnosed with cancer]

As a monarchist, a fellow human being, and a survivor of cancer, I can only wish His Majesty a full recovery and restoration to health and vigour. Yet, a cancer diagnosis can come with shock and a dire prognosis, in my experience, is not a battle to fight as only the real tools we have against cancer are faith and hope. Faith that the medicine, the miracle, or both work and the hope that there is a life after cancer.

This looks serious

I watched as what seemed like Athlete’s Foot on my left sole change from the dark blotches of discolouration into a painful weeping sore, I foolishly thought it would go away even as a little voice in me whispered this was cancer tugging at the heart of my life ready to thrust me off this mortal coil.

Eventually, I summed up the courage to go to my doctor demanding urgent attention as the pain had become otherworldly unbearable. The moment she saw my foot, she said, “This looks serious, I have to refer you.” Immediately, she was on the phone to the hospital and moving heaven and earth to get me in as soon as possible, and I got an appointment for the day after.

On observation by the consultant, he said, this is serious and is related to internal diseases, the internist would be in next week on Tuesday, it was Thursday, and I’ll be the first person he’ll see. I was given painkillers that killed nothing, a placebo would have done much better to manage the pain.

I have heard, then again, I know the pain of cancer, I was eventually on 4 different kinds of pain management, the most effective being a Fentanyl patch that I received a doubled dosage of after a few weeks because that pain just refused to fully subside.

We can treat this

Several analyses were conducted on what were fungating tumours that antibiotics did not seem to affect, having eliminated a diabetic cause, a deep biopsy of the lesions was done, and then the consultant came to my bed to give me the news on the 9^th day of my admission to the hospital.

These were his words, “We can treat this, but it depends on how your body can take the treatment, if you can tolerate it, you’ll be fine, otherwise, you probably have 5 weeks.” Two things I took away from this message, the advances in cancer treatment for Kaposi’s sarcoma were such that medicine had confidence, and the fact that mortality loomed 5 weeks away left you with a sense of the gravity of what a cancer diagnosis might mean to anyone.

At that point, I thought, I am going to survive this because I had by then navigated the Kübler-Ross Five Stages of Grief, skipping Depression and Bargaining to reach an Acceptance that I spoke within myself, “Akin, you have cancer, what next?” I was already looking beyond cancer and with that, I had my belief, my faith, and my prayers with the support of many friends and particularly neighbours.

Treating cancer, killing cells

I began my 1^st course of chemotherapy on the 5^th of October 2009, it was to be administered at 10:00 AM but delayed for 3 hours, I did not know that after the course I would be consigned to cytostatic ostracism as the cytotoxic component of pegylated liposomal doxorubicin (tradename Caelyx) meant no one should be in contact with any of my bodily fluids for up 5 days after chemotherapy. Nurses had to don personal protective equipment (PPE) to take blood or dispose of my urine. It was unpleasant, the treatment and the treatment.

As I tolerated the chemotherapy, more sessions were added, and I became more nauseous after every session three weeks apart that by the 5^th session, I was given novel anti-emetic medication to help keep my food down for the days after chemotherapy.

When I saw that a 9^th chemotherapy session was scheduled, I remonstrated to my consultant that I was planning on restarting my life from the 1^st of March 2010 when I was to have received the 8^th chemotherapy dose, they stopped with the 7^th which I took on Monday, the 8^th of February 2010 in the afternoon after I had attended the funeral service of my dear friend Dick van Galen Last who sadly did not tolerate the chemotherapy as well. We had the same oncologist.

By the 4^th chemotherapy dose, the cancer lesions had disappeared, and beneath the necrotised skin which had to be stripped off was fresh pink skin which however did not retain that colour.

What to expect

Each cancer journey is different, I count myself fortunate that the body of knowledge accrued from many who had no hope when medicine first encountered these cancers, others on whom experiments were conducted and never survived, then those for whom successes led to improvements and advancements that we further down the line took advantage of because medicine was confident and the treatments could be better managed for good outcomes.

• Do they know what you have?
• Do you understand it and how far gone is it?
• Is it treatable and what is the prognosis?
• What particular outcomes do you want, what options do you have, some might just want to go home than face gruelling cancer treatment? 
• How prepared are you in spirit, mind, and body for this journey?
• What is your source of hope in the midst of adversity?
• What support networks do you have to draw on?

Hope springs eternal, I believed and saw myself beyond the cancer and probably not much further, but each stage of progress gave the kind of assurance that there will be life after cancer and even if there was none, I would not have died in despair, hopeless, hapless, and without any sense of having lived well.

It is the most encouragement I can give to anyone facing cancer, it is a difficult process, it is part of the human story, some survive, and many do not, we are all grateful for life, but the biggest battle when faced with adversity is whether you can see yourself getting beyond it or life ending because of it.

There is no judgement in what you see, either way, your life and your story would be you lived, you loved, you touched and were touched, and the rest falls into the annals of timeless eternity, you walked this earth and will never be forgotten.

A pain in the back

Of bones and pains

It is interesting to understand the vagaries of accumulating years whilst straining to retain a semblance of youth and fitness about yourself.

After many years of back pain that at times had my slender partner stand on my back to ease the pain and little medical remedy for the occasion stabs of pain in the ribs, one had found some accommodations to live with it.

In other places, it was shin splints, I could walk very fast, but that seemed to present somewhat unbearable pain that obviously prevented me from running as no matter how cushioned my feet were, the pounding with running or jogging presented a threshold of pain I was not ready to endure in any masochistic way. I stuck to walking.

Canes and pains

Then for a few years, I had an umbrella for support, literally as a walking cane, sometimes unsightly but necessary as I found that walking for a while, standing for too long, or sauntering in a queue left me socially inadequate for certain settings.

However, twenty years ago, in December I decided to get a proper and decent walking cane, it had an ivory screwball at the top, but I soon settled for a Derby cane as that had a hook, I could put over my arm. It suited me well as much as I never conceded any sense of disability despite needing a walking aid.

Just about 6 years later, I had skin cancer in my left foot, the appearances in my right foot were not as serious, but the unbearable pain of cancer that I have written about many times before meant I could not walk on my two feet for almost 6 months, I had to use crutches, though, living in Amsterdam, I could cycle anywhere and the result of that was I got a bit of respite for the back pain.

Soon, I realised with a good pair of trainers or sneakers, I could probably get around a bit without my cane, but that did not ease the occasional back pain if I was standing or sauntering, the support of a walking cane even one I can disassemble into parts to carry around in my bag remained necessary.

Walking through airport security in Manchester, I get presented with a standard cane as mine is checked through security scanners. Their canes are, however, not of the standard one would be inclined to steal away.

Scan the spine

Then in late August, I had a conversation with my consultant, and we decided to get to the bottom of why I have needed a walking cane, all this while. It was never a fashion accessory, I just thought, if you were to use a cane, get a distinctively nice one that gave the support needed and looked fashionable enough.

An MRI scan without contrast was booked for early October for a full scan of my spinal column and now at least there is a medical understanding of why I have had back pain for about 30 years whilst not thrilling news, there is a kind of justification for the use of a walking cane, as for the terms involved in explaining the conditions, they are new to me and I am still reading up on the causes and possible treatments.

I guess one good point determined from the diagnosis is that I have lost no height due to kyphoscoliosis or the two osteophytes in the vertebral column. This is up for discussion with my consultant as to what ameliorating or mitigating factors should be considered. I am generally fine and relieved that some knowledge is gained.

The pain is a long story

Take pain in its stride

I am beginning to think my tolerance of pain is unhealthy as I endure agony with a sense of normalcy that should be anything but. At this point, this condition can only be considered congenital; I have had it for as long as I can remember.

It is not chronic enough to be an everyday thing; it comes as an affliction that could last more than a day, for which there is little remedy I know of apart from copious amounts of sweet milky tea and a good bed rest.

From about 3:00 AM this morning, I have suffered waves of stomach/abdominal pain, sometimes it is quite severe, I groan with a scrunched-up face, grabbing hold of my belly or just folding my arms tightly over my midriff, to ease the discomfort.

Probably get this looked into

It usually subsides after a while, and it could be accompanied by a diarrhoeal situation or not, but today, nothing of the sort accompanied it apart from an early afternoon feeling that I was about to develop a fever, and it must have been anxiety rather than reality.

Lying on my back did bring some comfort, and then another wave of pain swept through, almost like I was in an endurance activity. Eventually, I took some paracetamol with codeine in the hope that the waves of pain might be reduced in intensity.

As I wrote about this 16 years ago and every few years this thing returns like with a vengeance, maybe it is just time for have a battery of tests to properly understand why this thing rears its ugly head so inconveniently to my utter discomfort and discomfiture, that I had to cancel meetings than present myself to the scrutiny and concern of others who might think it is a lot more serious than it seems.

Blog - I remember this tummy ache (October 2007)

Blog - Knowing pain is personal (August 2021)

From left to right in the north and south

Gerstmann syndrome occasionally

As I sit here, I remember from this afternoon the flu jab that I was reminded to come for from my GP surgery when I somewhat forgot I had booked a 9:36 AM appointment. I guess everyone had gone through and they had until 1:20 PM to do a sweep, the text message to my phone came in at 11:35 AM, polite and entreating, I got dressed, donned a facemask, and made my way to the surgery.

After the basic formalities, I was ushered into a treatment room where after a few questions, I was asked whether I was left or right-handed, though I am right-handed, I sometimes have a confusion of my left from my right. However, today I consciously offered my left arm, a good bit of muscle to impale with a hypodermic needle and with a little twitch in reaction, the dose was delivered and I was ready to leave.

Between the north and south

I had a question about travelling to the southern hemisphere in their wintertime considering I got a bit under the weather last year. Do I need a flu jab for the winter? I asked. There are differences in flu strains between the northern and the southern hemisphere, so, it is unlikely that getting a flu jab here can help, though in the main, it should offer some level of protection.

However, I should expect some discomfort in my arm which could last up to two days, though, now that I think of it, I was not given a leaflet for the jab I was given which I did get on receiving the vaccine the previous years. It will soon appear on the NHS app, and I can research it. I probably should take some Paracetamol with Caffeine; I might even have Paracetamol with Codeine stashed away too. Yeah! I ran the gamut of an intensive interrogation to get that when I asked for Codeine when I intended Caffeine.

NB: Gerstmann syndrome which includes left-right disorientation.

Dare I learn to laugh again?

Where is my laughter?

The other day, I wrote about being sad, the sadness about many things as each aspect of adversity seemed to pronounce a lien on my sense of wellbeing. Much as I have struggled with things, I have pressed forward, not with the speed I wanted nor with the progress I expected, but I have kept looking for ways to encourage myself and refuse to allow the negative to take too much space in my space.

Blog: Sadly Sad Sadness (July 2023)

I had forgotten how to laugh, a strengthening power of joy had left me morose and concerned, preoccupied with many things and oblivious to the good, the beautiful, the wonderful, and the blessings that greet every waking day. Even if I deny it, some self-pity was creeping up on my patch, and I needed to get it off my lawn.

Bring back the joy

And Nehemiah continued, “Go and celebrate with a feast of rich foods and sweet drinks, and share gifts of food with people who have nothing prepared. This is a sacred day before our Lord. Don’t be dejected and sad, for the joy of the Lord is your strength! [Nehemiah 8:10 (NLT)]

The part of the joy of the Lord being my strength was registering in my thoughts for a while, but I was unsure of what I needed to do to begin to enjoy the benefits of this medicine of laughter with the healing qualities it presents.

Laughter for the pain

I have written about this many times before, when my Fentanyl patch fell off one Sunday probably when I was at church, the pain of cancer searingly deep came in waves almost too unbearable that as I got home still unaware of why the pain was there and then I began to laugh, not cry, but laugh as I realised how the laughter helped release endorphins that held the pain at bay until the newly affixed patch took hold.

Another experience of laughter was a few years ago when I met a pastor in a park, and we began to chat. He said some incredulous and interesting things to me and about me, much of which not only surprised me but were also as unbelievable to be considered impossible. I chuckled and even laughed just as Sarah in the bible did when she was told at the age of 90 that she would have a child.

Laughter for the winning

Laughter sometimes is an expression of unrestrained vulnerability that can leave in contortions of near embarrassment which when shared with others is a different kind of geniality, communication, and camaraderie. We do need more laughter in our lives as expressions of happiness and more so, joy, a kind of feeling of wellness that overwhelms gloom and presents a new kind of perspective on things.

I know it would do me good, it would heal a lot of pain, it will drown away sorrows and uproot the foothold of sadness, it would lift my countenance and I hold my head up high and in it will come the strength to know that the seasons are changing for a bountiful harvest where the windows of heaven are open for the pouring out of blessing. Delirium, you make think, let’s laugh adversity out of our lives.

Blog: Laughter follows my hospital visit (October 2009)

Blog: Thought Picnic: My laughter and my pain (July 2013)

Blog: Opinion: Where addiction and tragedy can confuse issues (April 2017)

Blog: And I laughed like Sarah (July 2021)

Blog: I was a hostage to pain (September 2022)

Watching a sermon preached by Reverend Richard Roberts he shared his testimony of one day owing no one and the next when he took over the reins of Oral Roberts University, they were $60m in debt and at risk of closing, how the joy of the Lord changed everything and everything changed.

The Joy Of The Lord // Rev. Richard Roberts // May 22, 2019 // Jay Eberly Ministries

I remember this tummy ache - II

I hate this feeling

As I thought about writing this blog, I felt I had written about the same thing before, only that I did not realise, that was almost 15 years ago. Then, when I wrote about it simply brings to memory the many episodes of this same discomfort I experienced in early childhood.

Blog - I remember this tummy ache (2007)

I have had a few occurrences of it recently, my remedy is sometimes lying face down with a soft pillow tucked under my abdomen for some relief and if that does not work and I do not feel the need to evacuate, I just make cups of milky sweet tea to drink, eventually, it subsides.

It’s that tummy again

These rotten tummy aches that from childhood I have failed to get any diagnosis for apart from the proverbial pat on the head with the assurance that it would soon go, is something I have somewhat learnt to live with whenever it happens.

Today, it started from dawn, in the waking hours; a mild and radiating discomfort that I felt would get worse, and it did. The ache does not incapacitate, but it tires and wears you out. Three cups of tea later, I was beginning to feel better though occasionally, that pain intensified that I bent over double and groaned out loud.

By midday, it had gone but I felt sore from the discomfort which does not seem to have cleared up into the evening. Maybe, I should consider getting a second opinion about it; a thought has crossed my mind. Any of them would indicate a continuous or chronic condition, but something may not even happen for months or years after a few hours, you do wonder.

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 22^nd 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.

References

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)

Let's treat the cancer and laugh

Notes to the times

I recall that when I was in the hospital, I was writing blogs about my situation, it gave the impression to some readers, especially my brother that I was not that so near death if I was lucid enough to be tapping away on a keyboard. He had no idea.

Even though I was in my sixth year of blogging, the records of those contemporaneous are the best journal of my life at that time and it becomes the kind of advice I would anyone who starts blogging. Always journal the before, the during, the after, the reflection, the analysis, the memories, the rehash, if you must and any other thing that celebrates your story.

Considering the pain, discomfort, and situation I was in, I find myself reading the blogs 12 years on and extracting some of the apparently humorous lines that made light of a grave situation. I say, no matter what you are going through, acquire a sense of humour if you do not have one and use it as much as you can, a little mirth can be extraordinarily good medicine, it saves your dignity and enhances your gracefulness too.

Excerpts to amuse

When I was in pain and it appeared, nothing was being done about it. “I was literally begging, give me morphine, I beg of you – I am in a hospital for crying out loud, I am not here to find out how much I can endure pain and seek my pain threshold as a thing of achievement – I am not that mad.” {In hospital to kill the pain]

Could there be a better way to talk of urination? “And so I have been manufacturing bottles of Premier Cru Urea 2009 by the gallon, the colour is golden, there doesn’t appear to be impurities, I would not hazard the ideas of bouquet, palate, odour and what not.” [Golden red and painless]

It was pain, pain and more pain. “No, I did not die and go to heaven; I lived through the pain to tell another story of an event in my hospital life.” [The looming abyss of a deep biopsy]

There can be no praise of hospital food, none at all. “Don't worry, I am sick-bag trained, no mess.” [Seeing hospital meals again]

If I had a book of Psalms to write, this might be one of them. “For weeks I had sacrificed my peace at the altar of pain, bringing offerings of agony and lamentations of the unbearable as I worshipped as a subject of things going wrong and circumstances becoming dire.” [Getting off the pain train]

When you move from manual to automatic, there probably is no instruction for that transition. “One observation, the hospital bed controls do not lend themselves to geriatric finesse, I have observed both fumble in frustration with the buttons, the more senior expelling expletives as if he was out at sea. Strewth!” [Crutches on the drip]

In utter exasperation, I wrote. “Can you believe it? I can hear him from here. Save our ears. Save our sanity or as restraint overcomes whoever decides the cat of throttling him – save that man from himself.” [A relocation from the cacophony]

Something called chemotherapy is neither a barber nor a dentist. “The chemotherapy is supposed to be very tolerable though, what I am told and what I read are in two different spheres. I am not to expect hair loss, as if I had much anyway and my nails will not be growing off my teeth.” [Scuttling cancer with chemo]

Content is everything, especially when vomiting, yet, sometimes, you just have to go through the motions. “So, four times overnight I regurgitated the exclusive hospital gourmet till my body was conditioned into realising you could only throw up content, the channelling remains in the body. It was horrible.” Then on the gentler matter of the thing that might have brought misery after much pleasure. “The pain that ran to my feet when I stepped off the bed for a shower was excruciating, I threw away all inhibitions and let the nurse bath me, she was gentle on my crown jewels.” [Nausea abates by suppository]

I probably lost some of my humour in the next few blogs, not that I had given up, I was in good spirits, the food and seeing it all again but not from the plate in which it was served was getting to me. One last stab at this cuisine. “I will NOT abide this food any longer, no not any longer.” [I'm alive after my autopsy]

One last act on the catwalk before I leave tomorrow. “I have also changed to using the designer hospital tunics which seem to have no front or back, I suppose you wear the buttons to the back for ladies and to the front for gentlemen.” [One more night]

One Tuesday morning in September

And I remember

It is the memories that stick so close to you in the stories you are given to tell and the gratitude you have for life. The 22^nd of September 2009 was a Tuesday, I had called a cab and my on-off partner, Marc was riding with me to the hospital. I took a change of underwear and nothing else, as I was unaware of what to expect.

My doctor had expedited an appointment at the hospital upon observing the fungating tumours quite prominent on the left foot sole up the big toe and the one next to it. My right foot was painful, but nothing had appeared yet. She dressed the wounds with generous amounts of Betadine solution and gave me strong painkillers that killed none of the pain.

A bed for you upstairs

This was my second hospital visit as the first that she scheduled for the Thursday before instigated a referral to the Internal Medicine department. On arrival at the hospital, Marc fetched a wheelchair and wheeled me in to see the consultants. The first two simply summoned the Internist, a professor of medicine and upon seeing me, he said, “You can’t go back home, we have a bed for you upstairs.”

I was dying of AIDS and the fungating tumours were lesions of Kaposi’s sarcoma, an aggressive skin cancer that could so easily be fatal and between the pain and cancer, they could have been on a race to do me in. Soon, I was in a bed and then taken to blood pressure tests at all my extremities to ensure my condition was not related to diabetes.

My first night to recovery

After that, I was taken to another room where high-resolution pictures were taken of my feet and the lesions before being returned to my ward and given some pain medication. The day was uneventful, some intravenous lines were fitted for antibiotics and saline solutions, lots of blood was drawn for analysis, I got some sleep, but the day was blur.

At night, I took some pills, had a morphine patch applied to my chest and an injection into my thigh to prevent blood clots and other issues with spending a lot of time in bed. I prayed a prayer completely unsure of my future, but that was the beginning of my new life and much else that followed.

Blog - In hospital to kill the pain