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

Thought Picnic: In my cave of safety?

I wasted many things

“Then said I, Woe is me! for I am undone; because I am a man of unclean lips…” [BibleHub Isaiah 6:5 (KJV)] These were the words of Isaiah the prophet as his inadequacies became evident in the realisation that he had seen God.

For one as I with many gifts unused and considerable potential unrealised, blessed with the grace and favour of fortune and opportunity that I have many times not appreciated, I find myself so literally undone by situation and circumstance, yet I should maintain a broader perspective.

A sorry story told

As a mere mortal with issues and vulnerabilities, feelings and imperfections that can stand out well beyond where you want expression, the vicissitudes of life can be quite impactful as you continually berate yourself of inadequacy and encourage yourself of possibility.

For a story tries to speak itself with volume that there was a time you could do this or another when you never had to think of that, facility and provision were present to do all that you desire and much more from that which you have acquired, but for the moment in which you reflect, you have nothing to deflect.

A longing for the hills

In the days of the seasonal chills,
As nothing is ringing from the tills,
You ingest with routine your nightly pills,
And wonder how to address the growing bills,
Whilst hoping you can dream away the ills.

Like the prophet, there is a humiliation of humility that strips you of the confidence that once betrayed your innate abilities, your voice is lost in the cacophony of the silence that envelopes you, the shell in which you find refuge is almost like you are caught in the helplessness of resignation, you want to lie down believe it is just a bad dream.

Come, come, come away

You cannot despair of the cycle of life, the turns that bring experience and lesson, for which knowledge of the past is not necessarily preparation for the present. How sometimes we could have seen the future better, but where would life’s excitement come from if you knew before it became known?

We all have our caves that little place that is hardly comfortable but generally safe, you can lick your wounds in secret, cry yourself to exhaustion in solitude, stir your spirit with some resolve and then rise to start the journey to where home and love abides. It takes time, time is the sting of realities ticking away like a clock, never really beginning to ever deeming to continue without an end.

In Telling: Beware of pill rumours

A day in hand

A few weeks ago, I looked at my 7-day pillbox on a Friday night when I was about to take my medication and I noticed I had one more day than I should have, I know I definitely took my pills on Sunday night as that is my start of the week, but I could not account for which night until Friday that I did not take my pills, the whole process is as automatic as muscle memory, the day markings on the container had long been lost to wear and use.

That was a rarity, as in the almost 13 years that I have been on a daily regimen, I do not think I have missed taking my pills for more than 15 days in total and probably quite less than that. There was one time when I missed taking my pills for 2 nights in a row and that was out of carelessness, I was away from the weekend whilst I thought I had packed my pills, I had in fact left them on the table at home.

That was over 10 years ago, and what that taught me was always to have a spare set of pills for that emergency of being caught out by circumstances I could not control.

Pills on a rampage

My fastidiousness with the medication is a complete turn-around from before I was started on antiretrovirals, for I had many fears and concerns, initially, it was the thought of the pill burden; the number of pills I had to take any number of times in a day and for how long. I heard people were taking pills in the double figures more than once a day, the medication had to be stored in the fridge and much else, but that was HIV medication history.

I had my own baptism of fire into pill chaos, that was after I was discharged from hospital. I had a whole range of pills and medication, antiretrovirals twice a day, opioid pain management every 3 days as a patch on my skin, different pain killers and analgesics addressing different kinds of cancer pain, thrice, four times, and six times a day, some depending on need, anti-emetics, suppositories daily, then chemotherapy, every three weeks.

For the first few months, I was occupied and preoccupied, this was the world I was afraid to entertain before I fell ill, and I told a few friends as much. My reality brought the requirements for this pill Armageddon, I could understand how the prospect of what might be ahead could scare anyone, it is a complete recalibration of life and lifestyle to meet your medical needs.

Each case is unique

Then, side-effects, too much information swirling around, and I had a good few from the obvious, as nausea and vomiting, insomnia, diarrhoea, itching, bloating, tics, and other kinds of discomfort, the loss of taste for proteins, like I lost my taste for fish or eggs when I was on chemotherapy. However, it was all that preconception of entering any kind of HIV therapy that became a barrier to my seeking medical attention as soon as I should have.

I can say now that there are so many improvements to antiretroviral therapies and medications, the pill burden is much less, usually one combination therapy pill daily, the side effects are not as bad, apart from a slight high some 90 minutes after I take my medication, I am fine. I prefer the regularity and routine of pill-taking to the possibility of an injection every few months.

Blog - An injection for my pills

The pill keeps me well and healthy, my CD4 count has risen considerably, and I have had an undetectable viral load within two months of being on antiretroviral medication. I have been on the current regimen since May 2010 apart from a 2-month trial of another drug in 2018 that did not work for me.

Blog - 12 Years on ARVs

The pills are out of patent and sourced as generics, each circumstance is different, but despite what we have heard or read, we must always avail ourselves of treatments tailored to our needs rather than out of the experiences of others, no matter no similar the symptoms are.

In Telling

In Telling: The spirit that sustains

Not your typical pill take

 The nightly pill take

So, let me take my pills,
That holds at bay the ills,
When I once had the chills

Then I weep at peristalsis,
Probably in need of analysis,
Water in throat paralysis

And in a moment, it goes down,
Though with rice, I almost drown,
That I can’t even pull a frown

Many years these gems I swallow,
Just as sleep will soon follow,
Not that I want to wallow

But to take the very attitude,
In much great and deep gratitude,
The medicine keeps us renewed.

An injection for my pills

My will for the pills

When I think about it, I have what I might call a health-year, the biannual visits to see the consultant in charge of my HIV management which has been under control with antiretroviral drugs (ARVs) for just over 12 years with two changes of medication that I handle very well.

Until I fell seriously ill in 2009, one of my concerns about what to do was around the pill burden, too many experiences and stories had given me the idea that ARVs were difficult to store, you took many pills several times a day and the side effects could be unbearable.

I guess by the time I left the hospital with a medication trailer of pills to be taken 8-times, 6-times, 4-times, thrice, twice, and once daily, along with the chemotherapy every three weeks, I knew my life was totally changed and would change radically if I were to keep alive by adhering to that pill regime.

Adapting fine to routine

With time, I was left with ARVs of just 3-pills to be taken once a day, and an antiviral prophylactic drug to be taken twice daily. On later chemotherapy sessions, I needed an anti-emetic to help keep the food in. One large pill taken an hour before the session and the two smaller pills for one each of the next two days.

The ARVs affected the bowel movements that I was put on a single-pill medication that I have been on since May 2010 apart from the change in late 2018 that lasted 6 weeks that did not work for me, I returned to the medication I was having rather than try something new. My pills are a nightly elevenses, they work for me, I have had an undetectable viral load for over 12 years and my CD4 count has been increasing appreciably. Those are the markers for the state of my health.

Good, but not ready

Last week, it was announced that the taking of daily ARVs can be replaced with injections taken every two months, or 6-times a year. Two injections, apparently to help many who have problems with the daily pill taking and the disruption to their lives. I do appreciate the usefulness and need for this, though I seem to have adapted when to the daily pills, I do not think I am mentally predisposed to this possible change to bi-monthly injections. [BBC News: First long-acting injection for HIV approved]

I get my prescription every 6 months for a 6-month run, and my day is planned around ensuring I take my pills as required, my weekly pill box laid out every Sunday and kept track of as diligently as possible, I might just be averse to change after having perfected this routine. Altogether, I doubt I have missed my medication up to a dozen times since the 30^th of September 2009.

Now, I might well consider an HIV vaccine if that becomes available as a yearly jab taken like a flu jab that would have the efficacy of keeping the viral load undetectable and the virus completely at bay. Until then, whilst I do not have the numbers, I am happy with my pills.

That stoned feeling - II

Felt like getting stoned

When the decision was made to switch my pills in May 2010 after 8 months of the irregular bowel movements and unexplained diarrhoea, I was promised a better quality of life along with the reduction of pills from 3 to one combination pill.

However, I was advised that I would have the side effects of getting stoned along with vivid dreams with the prospect of insomnia. Living in Amsterdam, everyone would have thought I knew what getting stoned was. For all the troubled adolescence I had that exasperated my parents, I never took to drinks or drugs, I got religion instead and with that stopped smoking at 18 having smoked for 4 years.

Now, I had taken a puff or two of a spliff and indeed inhaled, whatever effect it was supposed to have I never arrived there. My on-off partner who had come to stay with me for the first few months after I left hospital was in every way a stoner, he bought ready-rolled spliffs and smoked the living room to a cloud, playing with himself before going to bed in the main bedroom.

Google, how do you feel stoned?

Like I did years before when I had a sherry, a port and a glass of wine before getting sick into the sink later that night, I had to go online to understand what being drunk was, what a hangover was, now, what the feeling of being stoned was. I thought, having an idea of what it was would help me through the experience. Read it in the blog below.

Blog - That stoned feeling

It was a light-headed feeling almost like I was being starved of blood to my head, you feel faint though nowhere near fainting. It informed the reason why I took my pills late, close to bedtime, so the stoned feeling cleaved unnoticeably into my sleep. There are times I have been up and about when that stoned feeling begins, usually around 90 minutes after taking the pills.

I have over time been able to work through it without the need to settle down somewhere to recover. It can take up to 2 hours for it to clear up. If you were not that observant, you won’t even notice I was slightly impeded by the stoned feeling, my wits very much with me.

That stoned feeling was stronger last night

Strangely, last night, whilst I was writing my last blog, I felt the stoned feeling in a more accentuated way than usual, I could not explain why. I pressed on with completing my blog and was quite wide-awake into the early hours before I got some needed sleep. I cannot remember having any vivid dreams, I just wonder if there is a switch somewhere that got flicked. We’ll see what this night brings without getting too anxious about it.

There was an attempt to switch my pills in late 2018 which failed woefully, every possible side effect of inconvenience and negatively impacting my quality of life materialised. I presented an over 40-page diary of my experience to make the case for being returned to my previous regimen than having me being put on another guinea pig enterprise. We switched to a generic version in October, they seem to be just okay.

Some might seek the exhilaration of being stoned, even with experience, I cannot convince myself I like the feeling, one bit.

It is always my body first

Remembering the times

Some 18 months ago, I attended a neurocognitive clinic out of concern for a long-term condition along with the possible long-term effects of the medication I was on. Now, I know from research that many barely tolerate this medication, whilst I have adjusted well to it over my 8 years of using it.

In the past two years too, the consultants have been incessantly persuading me to consider switching to newer lines of medication with lesser presumably lesser side effects and more efficacy. Beneath that concern for me was cost, for years ago, I had been switched to a generic and more affordable medication, which is prophylactic towards a recurring condition I have not been able to shake off.

Change your medicine

The HAND test suggested I had folic acid deficiency anaemia, the readings of which since then have fluctuated between satisfactory and concerning, it is best boosted through diet, but there might be a need for a booster shot at my doctor’s. That need has not yet arisen.

Eventually, I relented choosing from 4 drug options one that would not change my pill burden thus resulting in changing my lifestyle and other routines for a frequent traveller consultant. The only benefit that came with this medication was I could take it with meals.

Beginning in the second week of October, I was given a two-month prescription for review in two weeks. I opened a diary for a daily record of how I felt using the medication and in the 17 days to the first review, I probably had one happy day.

Days of avoidable horror

Unexplained aches in my joints and head, excessive flatulence, constipation and insomnia were the recurrent events. Two rather vivid dreams killed every prospect of catching any sleep for the nights that had those nightmares, it was beginning to affect my productivity at work. Then I stepped on my weighing scales to note that I was close to my heaviest weight in 6 years.

At the review, I told them that the 17 days was insufficient a timeframe to make the decision to send me off with a 6-month prescription on the new medication, I wanted us to conduct another review in 4 weeks.

The issue of my memory concerns was brought up a few times, much as I had noticed memory lapses, I had created compensatory efforts to mitigate those shortcomings. Besides, if the decision to change my medication was to be predicated on my presumed failing memory, then another HAND test should have been conducted to ascertain from the original if there was a deterioration in cognitive function. That had not been done, and so to my mind, the premise on memory was completely flawed.

Not working for me

I maintained my diary for 44 days and submitted a 44-page documentation of my toleration of the new medication, it was not working for me and I wanted to be put back on my original medication. Recidivism from this new line drugs is recorded in research at over 50%, they are not as tolerated for the self-same side-effects we are told are fewer and more manageable than we find with our original drugs.

When I next spoke with the specialist, she was offering another line of drugs and I was having none of it, not another 7 weeks of being a guinea pig of drug tolerance, with the time from my original medication increasing to a point where it might lose efficacy, or I might have built resistance to it. I remonstrated to a state of distress that I do not intend to be presented prospective drugs à la carte menu to find out what works for me, I already know what has worked for 8 years.

Done with playing guinea pig

That, I believe was enough to convince the specialist to put me back on my old medication until my next consultation in April.

Apart from the first night of use, my old medication has brought back some of my sparkle and banished all those rotten side-effects. For, whilst a doctor might know what is good for you, you alone can know what works for you. Sometimes, you must be as forceful as you can be to have that viewpoint noticed and acted upon for your own benefit.

At the back of your mind, this must be the resounding mantra, “It is my body first before it is your guinea pig.”

After this phlebotomy, I am still unshaken

So, the day, it came,
Not to be left so lame,
Seen this many so tame,
Called Uber and got in the frame.

Two things he had to do,
Unsure if to use the loo,
The bloods for the brew,
And to the pharmacy too.

He handed in prescriptions,
Then asked for directions,
Waited for instructions,
A queue ten deep for reflections.

So old were the tools of phlebotomy,
A sheer piercing into his anatomy,
Not a time for bonhomie,
9 vials out of little old me.

Were it possible, I could faint,
The nectar darkened as paint,
In a room so quaint,
I fed a vampire and bathed a saint.

The pharmacy had readied my pills,
And the same Uber saved me from the chills,
Heard a tale of clinical ills,
Hopefully no time to pen some wills.

At home, some rest was taken,
The first time this much was forsaken,
I know I am not mistaken,
I will remain unshaken.

Thought Picnic: Miss a pill, dream a drill

Fear costing dear

There was a time I feared for going on pills, a prescription that went on interminably until some new discovery in medicine and pharmacology meant that either the dosage was reduced or for a determined period time, usage brought a cure.

It was this fear that precipitated a serious threat to my life when I for a time ignored the tiredness and seemingly failing health that suggested I had cancer until at diagnosis, I had only 5 weeks left if I did not respond to the aggressive treatment that my doctor said could cure the problem.

Managing drug therapy

When my chemotherapy taken every three weeks was increased from two, to four, to six and then to eight, I was told some had up to fourteen sessions. When after my seventh, I saw that a ninth session had been scheduled, I told my doctor, I was not mentally prepared from anything beyond the eighth. They stopped after the seventh, it was a reprieve.

Yet, after all that pain of cancer finally subsided, it took me another two months to come off the opioid medication. I was cutting the patch in half and keeping it on for longer because the side-effects of sudden removal were almost debilitating, it was horrible.

Planning ahead

Now, any time I go away, I always pack enough pills, just in case I have to be away longer than I initially planned. In fact, any journey has to be regulated to the amount of medication I can successfully take away without being considered a peddler of controlled substances.

The last weekend saw me in London socialising and I had every thought to fill my pill box before leaving home. It is usually the first thing I put in my bag, however, between the rush and the lapse in memory, I have halfway to London when I realised the pills were still at home. That meant two nights without my pills. Probably nothing too serious.

Back on top

Then again, my pills are ones where you try to do a catch-up of missed dosages, you just settle back into routine as soon as possible. Besides, this should not happen too frequently or the visitation of something difficult to handle might materialise.

So, on getting home, I took my pills at the usual time and rolled into bed under my warmed-up electric blanket, setting the alarm for 6:30AM because it was going to be one of my unusually early days to work.

Effects that endure

When, I first went on these pills almost 5 years ago, yes, 5 years in May, I was told of a number of side-effects I will have – vivid dreams, feeling stoned, insomnia, possible depression – for a while, I refused to read the leaflet lest I be overcome with a sense of hypochondria and any other mental indisposition that will make me utterly uncomfortable.

I had many of the first for the first few weeks, one dream I remember was being the gatekeeper to heaven and hell – Read about that here. I had to search the Internet to get an understanding of what it meant to be stoned, just as I once did to understand what it meant to have a hangover. I was stoned every night for years, but because I took my pills at 23:00, I was already in bed with a light head in the clouds.

For sleeplessness, they offered more pills, I declined, in fact that was the reason I moved my pill time from 20:00 to 23:00, I was not going to have drug-induced sleep, it was fearful enough being on four different drugs after I left hospital with varying levels of drowsiness side-effects, at one time, I thought I will never wake up.

For the depression, which I was neither sure I had or not, I went for therapy, because I knew that having suffered catastrophic loss of health, wealth, status and material things, I needed to talk with someone and better talk with professionals.

A nightmare story

After a few hours’ sleep, I woke up from an event, an old school friend and I, from as far back as my secondary school days – that is over three decades ago; met up and were walking back to some place, probably where we both lived.

From what I can recall, on our way out, there was no incident, but some construction activity had begun when we were returned. There was some heavy-duty activity going on and it looked like one of the workmen was swing a hammer to break concrete slabs.

I was a bit apprehensive, I did not think we could get through the site when my friend decided to make a run for it and as he passed the workman, he disappeared. It was not a hammer he was wielding, but a hoe-like scythe, a kind of horrific tool that can only be manufactured in the mind of a dream, but has no practical use or purpose.

This is the reason why I never watch horror films, I have the capacity to think up horror without encouragement.

Waking up

My friend had been scythed, amputated from the torso taking off the right leg, then the workman picked him up and flung him out of the way where I ran up to tend to him.

He did not die, nor did he bleed profusely, and he did not go into shock. He vividly saw what happened to him as I also replayed what could have happened in my mind as we waited for the ambulance. An awfully terrible sight and the return of vivid dreams, a reminder that I should never go off the regime of my pills except when medically advised to.

My mind was already overloaded with the consequences of that event, I woke up soon after, knowing fully well that, it was one of those dreams I will never forget, etched into my consciousness and the making of another bizarre story.

Thought Picnic: The tracks of a spider on my skin

Lumbered out of slumber

I have not accepted the fact that I probably suffer from insomnia even though some close friends have observed my erratic sleeping patterns.

My pill time is usually in the 2-hour window between 23:00 hours and 01:00 hours, suggesting I am awake until about 02:00 hours in the morning.

Once I am in bed, I polish off a few tweets, sometimes I get into a scrap many will consider rank floccinaucinihilipilification, but that is part of making light of a long day.

Sounds for bounds

Some music, a teaching, or audio lectures become the background sound of my descent into slumber that rarely stretches beyond 3 hours, if I do not wake up at least once in that period.

However, I have learnt to sleep with no background sounds and eliminated the fear of my mind wandering too far for me to control; the nightmares that feast on the agitated seeds of my imagination.

Lights, I still need, and that story is longer than I have time to tell or write about. I have somewhat found a way to sleep short, but rest well, even if I could do with a lot more sleep.

After my second short session of sleep that brought the dawning of the day, I said a little prayer and rolled over to interact with my social media community.

Derma arachnida

I felt a tingling itch asking for a scratch on my arm. And there, between the rational that saw a spider and the split second of the reflex of a flailed arm of its disappearance onto the camouflaged protection of the carpet; I realised I did not have enough information to ask for an antidote if I had been stung by the spider.

I guess that sometimes defines how we react to circumstances. The information we have acquired in the split second that requires the patience of another few seconds to make rational decisions based on getting better informed is lost to reflex and reaction that you are left none the wiser about the experience.

Surely, my spider moment is no exercise in floccinaucinihilipilification, is it?

Drawing blood for good news

Preparing for a date

In two weeks I return for my 6^th quarterly check-up at hospital, it has become a routine of expectation and consideration.

Before the appointment, at least 2 weeks before seeing my consultant I have to go in and give blood for tests, the results of which would become the basis of our discussions amongst other things when I see my consultant then.

It was quite a sunny day though deceptively cold, the mercury will not rise above 7 Celsius as the forecasts go so a scarf and gloves are important apparel as I had decided to ride to the hospital.

The process

Amazingly, there is always a long queue of people waiting to have their blood tested, all with forms and checkboxes that determine which tests need to be done.

We arrive, pick up a ticket and wait to be registered, at registration the hospital card is scanned and the nurse looks through the forms and keys in the tests that then produce labels that indicate the number of vials of blood to be taken and what colour the vials are.

I would have thought it would be easier to have a special scanner read the forms and produce the labels, but I suppose I have to give the nurses the benefit of doubt that they are eagle-eyed enough to ensure all the necessary inputs are keyed in.

Today, they were to take 7 vials of blood with 4 different colours which I think means the sets of tests to be conducted on the blood given.

Drawing blood

Considering the number of times I have been pricked with needles for medical purposes, it just never gets easier to watch the needle go beneath the skin in search of a vein.

In fact, I cannot bear to watch it at all; after the tourniquet is put on the upper arm and I clench my fist to allow for a victim vein to show up, I look away as I feel the needle prick my skin and wonder how I can remain so cool about it when I should get hysterical and implacable, screaming blue-murder as if I have gone mental.

I somehow comfort myself, rationalising that it would soon be over and I would either get up from the exercise or slump into a fainting spell, the latter would be the height of histrionics and I know I can do melodrama if given the opportunity.

The blood-sucking contraption is easy, once the needle is in; the low-pressure vial is plugged into the receptacle and that draws the blood till it fills up. Once the vial is detached the receptacle has a valve-stop mechanism that keeps blood from spilling as each successive receptacle is plugged in and unplugged until all the required vials are filled.

For each vial, after it is unplugged the nurse gives it a see-saw shake, not violent but gentle and at the end, labels are stuck on vials.

Meanwhile, the needle is removed and the blood stopped with some cotton wool and tape that could pass for waxing tape especially if your arms are a bit hairy.

Naturally, it is expected you have enough clotting agent in your blood to seal the needle puncture after a few minutes.

My expectations of good change

It two weeks however, my expectations are high with the hope of seeing a more resilient immune system that would allow me to come off some of the pills I ingest every day.

The pills are not necessarily a matter of life and death, they are just a fact of life, a routine and part of the day, something you live with without much fuss having learnt to handle the side-effects well that they no more matter than much anymore.

The catholic pastor was not about and I somehow felt this was one of those times that I really needed someone to chat to about the things that ail me and bother me.

Well, I suppose, I might just book an appointment to see him in a few weeks, probably after I have learnt of the story of my bloods.

Thought Picnic: Night cooking to self-exorcism

A person of the night

Being more of a nocturnal person, stranger things have happened in the night than should be the case in the lives of many others.

In fact, I have the inkling that if people had dreamt these things and shared those dreams with people of a certain persuasion and not a few, an exorcism would be ordered; based on contrived and tenuous links with some ethereal interactions with the spirit and God help them help themselves.

My nights start early and are somewhat regimented around the 11^th hour, the hour of pills; it behoves me to have abstained from foods two hours either side of taking my pills else I end up with a rather stoned feeling through the night.

Slight thrills of night pills

I have a physiology that can never like drugs, the eerie feeling, the light-headedness and that state of suspended animation of being between consciousness and the subconscious pushing my mind into a dreamy phase of lacking control over my imagination that takes flight to places angels fear to tread; it is a world I dread.

Taking food in that 4-hour window especially those that have the taste-enhancing ingredient of fat take me to that dreadful land and it has meant that the pill-time switch to the witching hour if I have succumbed to hunger pangs and ingested something later than 9:00 PM – I apparently do not have a set time for meals and that creates a bit of chaos in itself.

Ingestion is the easy part, incubation is worse, the incubation of thoughts, thoughts of what I would like to have for a meal and what it takes to make it.

A night of long beans

The other day it was moin-moin (bean pudding cakes – recipe provided courtesy of Adefunke’s defunct blog), I had to soak a bag of split black eyed beans in water for hours, the optimum being 8, I think they were soaked for close to 11.

The dried fish came out of the freezer and that was soaked in hot water, bell peppers, tomatoes, onions, boiled eggs, palm oil and species all came together in the journey to satisfy a yearning.

After blending in the peppers, tomatoes and onions into the beans, the other condiments were stirred into the mix and the first part poured into a baking dish, covered with foil and left to bake for an hour.

Then I found three small ramekins and poured the rest of the mix into them, placed the ramekins in a steaming pot and steamed the mix for about an hour.

After which I had the opportunity to savour my moin-moin in large cubic portions cut out of the baking dish or from one of the ramekins.

Stewing in the night

Then again, as I rummaged through the freezer, I found some frozen cooked meats and put the bag in the fridge for defrosting, it was well after 1:00AM when I put chopped tomatoes, peppers, onions and stock cubes in the blender – I was about to make some stew.

In 90 minutes, it was all ready and I was just having the stew as if I was having soup, satisfying a craving for tastes and food that just overwhelm you at unusual times of the day.

For those who know, imagine if you told your African-initiated church priest that you dreamt of cooking and eating at night or in my somnambulist wake doing the same – it would be Psalm 119; read 119 times into a cup of water that you have to throw away thrice – talk about hard-labour self-exorcism.

[Psalm 119 is the longest chapter in the Bible with 176 verses.]

Thought Picnic: Bedfellows with pain

A pain again

Now I am thinking, maybe I do handle pain a lot better than I thought I could. For weeks, I have suffered this niggling pain in the regions of my sole where cancer lesions thrived just over a year ago.

For a while, I ignored the pain and refused to let it bother me as I surveyed the area regularly to see if changes were appearing. For my eyes, I could see no changes but there was some hardening of the skin so I applied lashings of moisturising balm to ease the tightness and in some cases it was soothing too.

The typical off-the-counter analgesics did not seem to get to the pain at all so I did not bother popping those pills anymore, they were not working, the pain was somewhat deep-tissue and affecting my walking.

See me and observe it

So, yesterday, the discomfort was at a point where I felt I should call my treatment advisor as well as call in sick at work, I could think but the pain was becoming a distraction.

My treatment advisor spoke to my treatment consultant and arranged for stronger painkillers to be dispensed by my local chemist by fax, we also agreed to have me visit the hospital just to have a look at my foot as precautionary observation.

I biked to the hospital this morning and soon had my socks off showing my foot. It felt tender, slightly discoloured but on advice there was nothing to worry about. Apparently, there are occasions during the healing process where the pain might subside or return, since I had no fever and there was no sign of blisters or skin atrophy we just needed to monitor the situation.

Small pills for much pain

I had a long chat to the catholic pastor I had not seen since late spring, a topic for another blog and then picked up my prescription from the chemist.

Small white capsules for much felt pain; three a day, to kill the pain and the management to reduce the dosage over time.

All considered, I thought about how I had learnt to accept pain without much fuss; some experiences just have a way of becoming the norm.

In hospital a year on

That day last year

It was the fourth Tuesday of September 2009 when I went in for an appointment at the Internal Medicine Department of OLVG (Our Lady of Apostles Hospital), I was in excruciating pain quite unaware that I was so close to death if I had picked up an infection that touched my lungs.

The consultant had one look at my sole and another at me and told me there was a bed prepared for me upstairs, I was in no condition be left without round-the-clock monitoring.

There began my road to recovery which culminated in a diagnosis of skin cancer 9 days later, my first session of chemotherapy after 13 days and my return home on the 18^th day.

This day this year

Today, the third Tuesday of September 2010 and the eve of that day in September 2009, I returned for what was essentially an annual check-up after the November, February and May, what a journey it has been.

My consultant was pleased to see me, complimented my dressing once again and we settled down to the detail of the progress of my treatment and recovery.

My blood pressure was good, the level of Vitamin D had improved dramatically, other indicators with my liver functions and so on were fine too. I was not aware that I was anaemic in December, I suppose the doctor releases only so much information to avoid worry and concern that my impact on the recuperation process.

My weight has now gone from the lowest measurement of 64kg in October to 80kg which he felt was encouraging though I probably need to get some exercise to avoid the Michelin Man modelling of my body.

The pills remain

The matter of the immune system was still of concern, despite all other indicators looking good, there has been a slight dip but I have been told it takes time for it to strengthen appreciably.

So, I remain on the same medication I started on in May with the need to monitor the psychological effects of it and as far as my feet are concerned, they both look quite well healed.

I returned the excess medication I had from the discontinuance in May and I learnt it was better to give this to the hospital than the pharmacy, since the former would find good causes to donate the medicines to and the latter would destroy the stuff on the premise that they cannot prove the medicines were adequately stored.

Thanks to all

I am still most grateful and thankful for the wonders of medicine, the expertise of the consultants, the care of the nurses, the compassion of family, friends and neighbours, support of well-wishers and tender mercies of God that have seen me through some of the most trying times of my whole life – I cannot be thankful enough.

However, my Treatment Advisor still wants me to take things easy and not embark of any large-scale projects for at least another 6 months – here, the mind is urgent but the body needs times, I hope I strike the balance between them all.

Next check-up – December.

Please! No repeats or sequels for this dream

Seeding my dreams

I was warned one of the side effects would be vivid dreams, so I tried to fill my head with unsolved problems hoping to unravel the conundrums by utilising the excessive brain-power seeking thoughts to manipulate in sleep.

My thinking was like idle computers could be employed in parallel processing of complex algorithms, maybe dreams could be seeded with ideas and situation we do not seem to consciously resolve fast enough or well enough.

Too vivid for my memory

However, the dream I had on the Wednesday night onto Thursday morning is one I would not want a repeat of, neither would I want a sequel of it.

The vividness of the dream however stays with me from at type of remote addressing for systems where the links to the parts I wanted to address had decayed to becoming the gatekeeper of the portal to the afterlife.

The way that portal operated was what was intriguing, I was not afraid of the dead or the zombies that seemed to want to control me, I felt ready to deal with that and I ended up mastering that situation where normally people fell into a stupor of subservience.

Water and mercury

The portal however was like a concrete slab on which you stood and it flipped open in 2 ways to reveal a pool of water or a pool of mercury. When I finally got to discard the zombie, the portal flipped for the watery section indicating a good afterlife for that subject.

Apparently, the mercury pool represented the absence of life or ability, I caught a glimpse of the glistening pool as the portal flipped and even though I felt I might fall in either pool, there was a sense of balance that overtook me ensuring the portal slammed shut without taking in unready visitors.

I woke soon afterwards wondering what that was all about and this is just 6 days into my new pills to compound the long stretches of sleeplessness with sleeping pills? I think not, vivid dreams are had enough, but if you cannot wake up quick from them, that could be your final undoing.

If only we really could survive without any sleep, sometimes.

The solution is not the pill

She’s the teaspoonful of sugar

Beyond having medication prescribed by my doctor, I have a treatment advisor, someone who helps you navigate the maze of dealing with multiple drugs and how those could affect your quality of life – physiological, mental, social and everything else.

Whilst the specialist could give me the general view of expected side effects, she told me how best to handle the situation and wanted to be informed if I had any adverse effects. Basically, like the old school song – The teaspoonful of sugar that makes the medicine go down.

We agreed last week that I would go on the new pills on Friday night and since it was a long weekend, Monday being Pentecost, it was the sensible thing to do – the more socially embarrassing part of the pills I was giving up was diarrhoea bordering on incontinence – it is over now, the detail I cannot yet cover as to how it really bothered me.

Where is my slumber?

So, after the fourth day of taking the new pill, I called the treatment advisor, the only serious side-effect I noted was I was not sleeping – my eyes were closed but I was too aware through the night as if I was awake.

Something about being on medication seems to leave you in the most vulnerable position to be persuaded to take a few more – I do need medication for the core elements of preventing a relapse but I would not resort to ones that offer me a prop for continued existence.

Not if I could help it

Immediately, she suggested I go on sleeping pills – No, I do not want drug-induced sleep – we need to find a way of managing this regime of medication to align with my body-clock or tiredness.

I did strongly resist taking that advice the more she tried to persuade me of it being the best course of action to take – in the end, we decided, I will take the new pill at midnight, close to when I retire at night – I am somewhat a nocturnal person, I am more active towards the end of the day, we’ll review the situation on Thursday.

If it means I take the pill at some seriously odd hour to get my sleep and avoid the feeling of being stoned, we would find that time but sleeping pills are just completely out of the question.

Surely, not everything should have the first resort of pill-controlled sense of wellbeing and in this case, I pray it is neither the first nor the last resort – it should never be part of the solution.

That stoned feeling

Tired enough to feel nothing

The news pills had their debut on Friday night. We had a late working day; in fact, I had to leave before all was finished because I was beginning to wilt – it was difficult to think straight.

That was just about 21:30 hours and as I got home I was so exhausted and almost out of it, so at 22:30 hours after affirming to myself that the pills will do me good, work as prescribed for my well-being and that I suffer no ulterior side-effects I popped the 1^st pill and went to bed.

Well, not bed per se, I was at my computer operating machinery – my keyboard – for another 90 minutes before I finally made that 30-centimetre journey to my bed to seek sleep.

I had been informed I would have the feeling of being stoned; I cannot say I felt anything too different apart from some thoughts that appeared to be going out of line which were drawn back into focus but it was a bit of a roller-coaster ride.

Thoughts management

Each thought had to be assessed on the logic of its existence, why I was having the thought and if it was relevant to what situation I was in then – if not, discard and process the next thinking – in one or two cases there were exaggerations of claustrophobia or lines both of which had to be tempered with a sense of proportion – I am not hemmed in and no, a door does not have to be that high.

I slept well and woke up feeling fine, my neighbours were informed of the night and there was the plan to take in some sun but before I made the outing I was back in bed sleeping – it was not till late afternoon that I found myself able to go shopping at the Absolutely British shop in Amstelveen, I agonised about the right metro stop having forgotten my phone but convinced myself eventually that I would get off at the right place, but on returning home, it was bedtime again.

In the meantime, I had already done some productive work on my computer, building a few virtual machines for a number of experiments – I do wonder when I got that done during the sleepless times.

No sureties for sureness

My second night was a bit different, I might have really felt stoned, there was a feeling of delirium and sense of not being in complete control and for me that meant you stayed in bed not walked around the house.

Did I just hear someone ring my bell? Well, at that time, maybe not – but that has happened before, that is before I was ever on these new pills – I rationalised, but not before I went to check to be sure.

To be sure – that seems to be the feeling, whether I am sure of that thought, that action, the feeling, that whatever expression it might be – sure, I am sure of that, if it computes – what a wonder our brains are.

On some majesty’s secret service

Vivid dreams?  I had one, a city-wide black-out, a candle light where I was ensconced until it was raided by North Korean agents who eventually found me but before they had the time to torture me for information I did not have a smart agent got me out of harm’s way.

In our embassy (Do not know which country I was a citizen of), we saw 3 double-agents, well-armed, debriefing a prized asset under implied duress and ready to do harm – we however had access to the central air-conditioning system controls with the security clearance to quarantine areas for oxygen replacement therapy resulting in the delivery of condolences to the agents who had once been exposed to a particular chemical which the asset had never been exposed to.

The smart agent had been on rescue missions like this before if we could access his “Red” files including one where the rogue got chewed up by water closet in a toilet cubicle without neighbouring occupants noticing what was going on – all recorded for the files.

I needed to wake up from all this stuff – I eventually did – what a trip that was.