Like swallowing a poison pill

This is scary stuff

When I opened the packet of my new medication just over three weeks ago, reading through the medical notes was an experience in itself. Then, I had to tear off a “Patient Alert Card”, to which I wrote in my doctor’s details and was at all times to carry the card with me.

If I were to have a hypersensitive reaction, I was not to ingest any more of the medicine as I risked a life-threatening lowering of my blood pressure or even death. Before I took the medication for the first time, I already had the severe side-effect of a psychological upset.

Having done my research of the options, it is fair to say that the documented side-effects are a compendium of misery, it is no wonder that it is reported that the attrition rate of switching back to old formulary is close to 50%.

I needed another review

I kept a diary of the side-effects I suffered over a period of 16 days before our first review that was to completely switch me fully to the new medication for the next 6 months before another consultation. I did not think 16 days was long enough to make that decision, as adjusting to new medication would normally take longer and I would rather we had an assessment to ascertain the efficacy of the new regime than to discover a treatment failure 6 months hence.

The side-effects included insomnia, a tingling skin rash, a feeling of constipation, joint ache and flatulence amongst other minor complaints and two episodes of vivid dreams as nightmares that left me unable to sleep for the rest of the night.

At the review, I was asked why I made the switch as I was seeing another medical personnel who did not know that I had been nagged by the department to consider a switch for almost two years. My understanding was the switch was necessary because this new line of drugs had lesser side-effects and obviously they cost less.

What kind of a pill is this?

I was comfortable with the medication I have been on for over 8 years, the issues I had with my memory were well compensated for, I would not have considered a switch for the kinds of side-effects that I have recently suffered. Bloods were drawn and we agreed to meet in three weeks for a second review.

Meanwhile, I am taking my pills 2 hours earlier than before with no change to many of the side-effects, especially insomnia. I am also keeping my diary as a documented trail of how I feel, which is not helped by my realising that I am gaining weight – apparently, this is one of the other side-effects and no new medication is worthwhile if psychologically you are left bothered by a negative body image, the danger of sudden death and much else.

Have I decided on a poison pill?

On becoming anyone's guinea pig

Wards of discomfort

I have known hospitals from the very first day of my life that they do not seem that strange to me, but many a place have I been that it might not be as welcoming as to make one feel well.

In the last few weeks, I have 4 visits, check-ups, assessments, observations and talks, some could well be unsettling if not for a rather calm exterior. For it, all began with a suspicion, whether a growth, she could not tell, but it came with a referral.

Meanwhile, in another place we had a discussion for a change of medication, in my research, of the 4 options presented, none seemed like a safe transition as the listed side-effects were fearsomely avoidable if one just stuck to what one was already on for 8 years already.

Yet, they say, these are newer efficacious drugs, but the news out there suggests over 50% have returned to their original medication just because of the side effects.

A belly prod

At the referral, I could not say the consultant was pleasant. Much as I was invited to see another consultant who I had read up on, the one I saw had a bedside manner that served me lots of discomfort. The hand I offered was not taken and the introduction was mumbled or maybe I had suddenly become hard of hearing.

He referenced the notes, asked a few questions and then had me on the gurney but called in a chaperone nurse before he did anything. For God’s sake, I have been violated by medicine too many times to be concerned by a poke, prod or prick, but needs must for all the reasons in the world.

I felt no pain as his hands did the feeling all around my abdomen and elsewhere before I dressed up and he returned to the desk to scribble away. He was recommending a colonoscopy and a phlebotomy, whilst I was thinking, I would rather be with the people who know a lot more about me.

Pills of life

Then we decided, that was the best, it means my doctor who over almost three years has collected sheaves of medical material about me, but I have never met would be arranging for me to visit a department of probing analysts.

In all, I am now in new medication for which the side-effects have not been that serious, we would review the situation next week, at which point it might well be a full transition. My medication comes in a little box with a difference, I found I had to peel off a card that suggested certain side-effects could be life-threatening. Now, that is scary stuff. I have to travel with a card listing my doctor’s details.

I chose this because it offered no change in pill burden or mode of consumption, I could still take it at the same time as with my old pills and now, with or without meals. If I do suffer pyrexia; a medical type for having a fever, have a skin rash which might well be invisible considering, have shortness of breath, feel queasy, have a sore throat or a cough, I should consult my doctor immediately.

Just writing all that makes me feel unwell, but I thrive. Now, what is an umbilical hernia? That came from the prodding and poking. Whilst I protest that it is my body first before it is anyone’s guinea pig, sometimes, I find myself the latter, just because I am the former.

In maternal discomfiture

In maternal dispute

Just about 6 months ago, I went for a neurological diagnostic test just to ensure that my concerns about memory and reaction were not a systemic degeneration of my capabilities, though for what I had noticed about my concerns I had designed elaborate compensations for.

Blog - My HAND on my head - Memory Screening Tests

It so happened that all my considered reflexes and powers of recall were fine even if order and precision were not exact, my consultant did not think there was a problem. However, he did recommend I do a barrage of blood tests just to determine if there were other treatable conditions to assess.

The results of the blood tests suggested a Folic Acid Anaemia Deficiency (FAAD) for which I was to take Vitamin B12 and Folic Acid supplements.

Blog - Folate, I must, lactate, I can't

Keeping the flu at bay

To deal with the FAAD, I got Folic Acid 400 µg from the pharmacy and was not particularly comfortable with the label that suggested it was for pregnant women as it contributes to maternal tissue growth during pregnancy. As it transpires, everyone needs Folic Acid for cell growth and development, and this should be obtained sufficiently from diet except when pregnancy demands more than is supplied in the diet.

This morning I called my General Practitioner to schedule my influenza vaccine which I took for the first-time last year and has on the recommendation of my consultant to be taken annually. I was given an immediate appointment from an hour hence and I walked up two streets to see the nurse.

When I was called in, after the basic formalities of my identity and a few questions about reactions and allergies, she brought the vaccine out of the fridge, pricked the upper shoulder muscle of my left arm and injected me. I am usually surprised at how they call the prick of a needle a scratch because it is not. However, the needle is quite thin that it rarely bleeds after the injection.

In maternal balance

Then I asked about a possible Vitamin B12 injection booster that my consultant told me of at our last meeting in September, but the nurse needed to see recent blood tests to be sure of whether that was necessary. Going through me online file, she found a recent letter from my consultant which indicated my FAAD issue had gone and my readings had returned to normal.

To be honest, I was not keen on the Folic Acid supplements and I only took fortified cereals for breakfast for a few weeks. I am not a breakfast person, but I was glad to learn of the development, though surprised that I had not yet received a letter from my consultant about my latest blood tests from September.

A slight discomfort from the injection and I will be fine.

Folate, I must, lactate, I can't

A 'Don't Worry' Call

A couple of days ago, I saw a message on my phone. The doctor's surgery had called with a message from the hospital, I was to contact the surgery for a chat, but it was nothing serious for me to be concerned about.

There is a psychology to delivering news pertaining to health, and as long as it does not appear to be a life-threatening emergency requiring immediate action, they do well to allay your fears.

So, I called the surgery yesterday morning, where the conversation revolved around calling in to see the doctor for another few check-ups but for the fact that we could not find suitable scheduling since I spent the weekdays working in Scotland.

My lifelong gestation

The alternative was to have a quick chat to the doctor and see how things go from there. A few minutes later, the doctor picked up the phone and the conversation pertained to the results of the blood tests from the HAND analysis I did last month.

Then, the consultant ordered a battery of blood work to eliminate possible and manageable causes of my perceived short-term memory issues and attendant matters.

Apparently, I have Folic Acid Deficiency Anaemia, Folic Acid which is Vitamin B9 is also somewhat related to Vitamin B12. These two vitamins are essential to forming red blood cells, they help nerves function properly, Folic Acid is also essential in forming genetic material in every body cell, hence enabling perfect replication.

Knowing the reason why I forget to remember

Now, my knowledge of the use of Folic Acid supplements was for terms of pregnancy and though I have never seen my own period since before I ever knew what they were, I did wonder.

However, the deficiency explained the tiredness, insomnia, the occasional lethargy and the forgetfulness that I had highly compensated for through aide memoires, double-checking and reticence in proclaiming logical conclusions at work. That the cause could be dietary was also worrisome. I am working away from home and hence have no luxury of home cooking.

To make amends, I have to introduce cereals fortified with vitamins into my diet and I will consider supplements, yet I must be careful at over 50 not to run in excess of my daily allowance.

In three months we'll have some bloodwork done to ascertain if the deficiency has been remediated. I may not naturally lactate, but I must folate to keep well.

Hospital: That was brutal

What a start

Wednesday could only have been termed brutal in more ways than one, I returned home from the hospital and just went straight to bed to sleep off the feeling.

It was my biennial check-up, the one I was prepared to go for a month ago, only to realise that it was a month later. I got my appointment card and called an Uber cab to take me to the hospital and that is where my physiological problems began.

The Uber driver in the quest to cut out traffic ran into road blocks and other traffic that the 40-minute leeway I gave to getting to the hospital was being eaten up that I was getting anxious. The journey only takes 20 minutes, I arrived, just in time.

The pressure of the world

Then through the labyrinthic corridors to the Out-Patients’, I wended my way, half-hobbling and almost reduced to panting when at the reception I realised that I had forgotten to put my appointment card and treatment journal in my pocket. Though I did not need that to identify myself, I was at that point flustered when I was directed to sit in the waiting area.

Minutes later, I was called in for a weighing and blood pressure assessment. My weight has been going down, but the numbers that came up for my blood pressure were astronomical, both the systolic and diastolic measures in the 3 figures.

We tried the other arm, but I was already in a state, the numbers did not radically change. The nurse opined as did the doctor later on that certain patients have a white-coat syndrome that heightens their blood pressure in a hospital setting and that hospitals are rarely the best place to take blood pressure measurements.

A doctor I miss

I did not think I had a white-coat syndrome, I have known the inside of hospitals from the day I was born, there had to be other factors. My little sleep, the Uber ride, my forgetfulness and any other factor that is as yet undetermined. I did measure my blood pressure in the relaxed setting of my home yesterday and the numbers looked within the ranges of normal.

I was meeting the doctor for the first time, he introduced himself as a registrar, I have lost count of the different faces that make up this department. The head of this department when I first attended this hospital some two years ago, an affable and friendly man with a gentlemanly mien and comforting bedside manner had retired and was out in Burma doing charity work. I last saw him in October and he was the one who suggested I had a big do for my 50^th birthday.

Then I had had the opportunity to research the incoming head before I met her in the middle of the last year, we got on quite well. However, as the new doctor began to go through my notes, his apparently calming assurances left me in more discomfort and anxiety than I have ever felt meeting consultants in the last 8 years.

The whole works and working over

Maybe it was a confluence of events, but by the time I had seen a few more unpronounceable names to do with my liver, my kidneys, my gall bladder and my bile ducts, none of which on further research back home presented an alarming set of circumstances, I felt like I had gone in for acne and ended up in intensive care.

He was being thorough, at least that is what he told me and invariably, my drug regime might be modified in 6 months’ time based on cost, and I have a battery of tests to follow, bloods, liver scan, cognitive impairment and a ‘non-judgemental’ review of my sex life. Then he put my numbers through QRISK to determine my susceptibility to cardiovascular disease within the next 10 years and having stopped smoking 33 years ago, I was denoted an ex-smoker rather than a non-smoker; technically, he was right and thorough, if not pedantic. It was the full works and brutal.

I took copious notes and at the end, we did not even have a customary handshake before he was out to pick up the notes for the next victim, sorry, patient.

That was brutal

I put in my prescriptions at the pharmacy and joined the long queue at the phlebotomist’s, where a bit of gallows humour appeared to lighten up the day. When someone asked if they had lunch breaks, I quipped as to whether vampires ever took breaks from bloodsucking.

When I finally got home, I just went to bed, too much had happened in such a short day. Yes, it was brutal, by all standards. I am not looking forward to meeting this doctor again and it is probably nothing to do with him, I was just completely ill at ease chatting to him.

Hospital: Doctor's orders: Have a big 50th birthday celebration

Uber to the zoom

For all the early planning I had done to get to the hospital on time, I barely had 20 minutes to hail a Uber taxi and make it out there. After exchanging pleasantries, I told the driver where I was going and he had the presence of mind to ask when my appointment was, we only had 15 minutes to make my appointment.

We made it in 17 minutes through no prompting of mine to take alternative routes or avoid traffic jams, for which I was quite grateful. Incidentally, patients can be sanctioned for missing appointments but medical establishments are rarely under obligation to meet the scheduled appointment time.

Mangled tardily

In most cases of my attending hospital appointments, I have rarely had the occasion of seeing my doctor or consultant on time and we all just accept that as the norm.

I registered and went to sit in the waiting room where there are five others in waiting, some 10 minutes later, I was called by an unforgivable mangling of my name, I swore under my breath at the lack of an attempt to do it well. Besides, my file already shows I prefer to be called by the shortened version of my first name than with that longish one that in the mouth of my mother spelt I was in deep trouble.

My weight as usual threw up numbers I could not bear to countenance whilst my blood pressure read the kind of figures that put me in my second youth. Three is work to be done about my gravitational displacement.

Called up

Returning to my seat, I chomped through my magazine waiting to be called in and at the 65^th minute, I finally had my chance. Having seen many doctors in this unit, this was the first time I was meeting the main consultant. We had chatted before on my first visit, but only to hand me over to another to review my medical history and then when he provided a basic assessment of my situation.

Being in clinic today, he recalled that I was the very well-dressed man the first time that put all the other ward staff to shame and then ushered me into his office where he gave me a warm handshake and motioned to me to sit down.

Poring over my notes, we went over histories, analyses, results and prognosis within which I expressed my concerns about getting treated for a chronic condition that had not been addressed for over two years. He then suggested that I should consider the tough drug regime which would last 3 months instead of the original 12-month regime and that it is rather better tolerated now than it was in the early days.

All matters considered

I had my mind set on the alternative therapy and was really not prepared for this new piece of device that I felt I could not make a clear decision at this meeting. We then set a prospective time for 6 months hence whilst a new prescription note was filled in for the intervening period.

The bloods had their own story to tell, all reading good, a minor indication of my not fighting my condition as well as I used to and a slight inflammation without attendant discomfort. Not as good as I will have like things to be, but all within the limits of tolerance and expected responses medical opinion entertains.

Besides the essentials of this consultation, the meeting was warm-hearted with probably the most compassionate and empathetic concerns I have had from a doctor in a very long time.

Caring and nice

He asked at the beginning if I had found the love of my life, understood the angst and struggles in finding a suitable partner and was quite involved and personal when I asked about the consequences of the options I had before me in terms of treatment.

However, the deepest affection was shown to me when realising I will soon be 50 and I said I was unsure of what to do for my birthday; he said, having seen 50 and 60, the best thing to do is to go out and celebrate it well, have a party and be thankful for the joys of life. He also hoped by then I would have found the love of my life and be much fulfilled and happier when next meet in February.

On that note, we parted ways with a warm handshake and I feeling good at his wonderfully relaxing bedside manner despite the issues we needed to chat about.

First impressions of another English hospital

Reporting for duty?

My treatment has travelled as much as I have travelled through the hands of many doctors from when I was in Amsterdam, worked in Wales, returned to London and now in Manchester.

My handlers in London’s East End of Whitechapel and I decided that trips down from Manchester for check-ups and replenishing my medications limited my options for closer monitoring of my health, that it was better for my whole treatment regime to be moved up near my new residence.

I had an invitation in December that I could not attend and my calling up to reschedule the appointment simply put me back in the queue for another appointment that came 6 weeks later.

The quality of English letter writing does shock me at times, the part where I was informed of the new appointment said I should report to the outpatient’s department. ‘Report to’ is the kind of phrase used by law enforcement, the courts, for formal arrangements or when instructed to go to see the headmaster in school if you have been in trouble. I would have thought a milder, ‘Please attend the clinic at the outpatient’s department’ would have been a more convivial use of the lingua franca.

Uber and out

In any case, I was not going to be late for my appointment so, for the first time I launched my Uber app to get a taxi to the hospital in the north of Manchester. I had hardly finished when a call came in from the cab driver that he had arrived, I literally rushed out precariously crossing the street when usually I cross at zebra-crossings, traffic lights or Belisha beacons.

From the thick accent of the driver, I realised he was Nigerian. We engaged in general small talk about work, living in Europe and then after I confirmed he was Nigerian and from the east, we began on Nigerian politics. He sounded informed by the sensational rather than the researched, which meant it was better I was circumspect than talkative.

I betrayed no confidences and whilst he got me to the hospital and I tried to get him to drop me at the main entrance, he insisted he normally drops people at the entrance of Accident and Emergency – I was neither in an accident nor in need of emergency observation – I let him do what he intended and got better directions of where I was supposed to go from the A&E reception.

Open-minded to options

Strangely, the reception at the main entrance was not manned, but there were good enough signposts all around the hospital that I did not have to ask again where I had to go.

At the outpatient’s reception, I was registered with the insistence that I be addressed by my simple name rather than my full name - I dread hearing my full name call out, because it reminds me of being in trouble, especially with my mum. Since I rarely like to be pigeon-holed by ethnicity, I chose the option of 'Black – Other Background' and decidedly refused to fill in the box for religion. I will follow the best medical advice I can get for my condition than allow beliefs to deprive me of well-regarded expertise.

It means I will take blood transfusions if needed and as long as any other treatment is not detrimental to my well-being, I will be ready to consider the option, as long as I am fully briefed and informed about the options available.

Retrieving histories of hospital life

My file was empty and the papers the consultant needed to review my case were not available because his secretary was away. It looked like we were off to be bad start. They apologised and I was palmed off to a junior doctor to have a chat.

Sometimes, I am unaware of the amount of knowledge I have of my condition, dates, diagnoses, treatments, side-effects, experiences – he filled in two pages of notes by the time I had finished.

He opined that he rarely meets anyone who has as much informed of their treatment history without referring to notes. Yet, I was apologising for not bringing in more journals of the bloods and readings that I had accumulated over the years.

I then went to be weighed and have my blood pressure taken, where the banter between the nurses and I revolved around weight and how my clothes had added about 1.6kg to the reading I took at home in the morning. I offered to strip off they could provide the music, the risqué things we get up to.

More introductions and a conclusion

Returning to the doctor, he had a chat to the consultant who came round to introduce himself, offering encouragement and assurances that all issues presented will be dealt with, though after a battery of tests to help determine what course of treatment is best for me.

He gave me his card because I told him I had already dredged the Internet for information about him and found that all references to him used just his initials and surname, which made me wonder what his first name was. He told me and we laughed.

As he left, he asked what I did for a living and then said I was so well dressed, I put them all to shame. On this visit, I obtained a new prescription, the order to have some blood tests done, and some other slightly intrusive tests. Comparing this engagement with the friendly engagements I used to have with my treatment consultant in the Netherlands, I think I will be happy with this new assignation.

It was however late, so I will have to return to the hospital at a later date to do the bloods and refill my prescription. We have an appointment set for just under 3 months hence.

That matter of identity again

Returning home by Uber again, I was picked up by someone with a familiar background as myself, a third-culture kid whose parents were from Pakistan or British India as it was then known when his parents came to the United Kingdom. The familiar story of being told what your identity is supposed to be rather than who you think you are, was a constant refrain.

In the last 50 or so years, the issue of identity has become too fluid to be matched to race, religion, culture, and language, place of origin or ethnicity. Global travel has made identity become more a function of experiences rather than lineage.

People have multiple influences that become part of what is their identity and rather than repudiate one for another to identify with some subset of humanity, many of us are fully embracing every aspect of these influences and proudly identify being comfortable in all the places that have impacted our lives.

On the whole, I felt quite refreshed by both the hospital visit and the Uber taxi rides, I look forward to my next appointment.

Decade Blogs - Oyedeji Aderemi - Killing Ourselves Softly

Decade Blogs

Another doctor I successfully persuaded to contribute to my #YourBlogOnMyBlog Series commemorating my Decade of Blogging, who goes by the portmanteau English-Yoruba name of GreatIse [Great Work].

Blog - To Celebrate My Decade of Blogging

Indeed, I am proud to have such a brought spectrum of people from all walks of life, of all ages, accomplishments and in professions too diverse to mention.

Dr. Oyedeji Aderemi in the midst of the suffering and pain he encounters daily on Nigerian hospital wards brings a great sense of perspective, humour, humility and groundedness that enlivens Twitter with good humanity.

He is a friend to two very wonderful friends of mine and I look forward to meeting him in the not too distant future.

He blogs at iseoluwa.blogspot.com, and his Twitter handle is @greatise.

Through the eyes of a doctor in Nigeria, GreatIse brings us round to understanding what the Nigerian problem is, a clear diagnosis of we, the people presenting the symptoms of total chaos, disarray, dysfunction and an avoidable mortality rate. Our morbid reality might just reveal some truths about us. Read and reflect.

Killing Ourselves Softly

I think we are too angry as a people, and we direct our anger and bitterness towards the wrong people since the root cause of the problem is beyond our reach and sometimes when we find ourselves in their presence, we are mute, overawed by their presence and the power they wield.

That said, I started thinking some days ago about the state of my nation, and the continuous shovelling of the blame down the throats of our leaders. I decided to step back and take a second look and I started seeing that we, the followers, are the major culprit. But too many political talks out there, so I shall eschew from saying much about politics and my nation Nigeria.

I do not want to talk about the security situation of the State I live in, the spate of kidnappings of medical personnel and the killing of a senior colleague recently. Is it the pain and the sadness of my patients or the way healthcare costs as further impoverished them, the tales of many lives lost on bad Nigerian roads and the inability of the existing health infrastructure to give them a chance to live?

Two years ago, this year a dear friend died following motor vehicular accident injuries she sustained that the hospital failed to manage appropriately. The faces of patients I have lost due to none availability of appropriate medical equipment still haunts me occasionally, I remember each face, and it is not enough to tell the stories of men and women rendered barren, the families torn asunder and the orphaned children. The many abandoned children and the elderly dependant ones thrown into the bush because their family members believe they are evil!

While we die due to the non-availability of required equipment, we die from lack of appropriate manpower, bad road networks, fear of what the police will say if we help a gunshot wound victim and from our greed! Yes our greed kills us daily; it kills the unborn child, the pregnant women and the ailing elderly! The young energetic ones are not left out, amputated limbs that could have been salvaged. We kill ourselves in instalments also, daily with our habits, valuing the show of affluence over good health. It is our choices that kills us one choice at a time, daily we stare death in the face and we know it not!

This is supposed to be a happy write up to celebrate a man I have never met nor spoken to as I type this, but one with a passion for his country.

Sigh! I watch my sons play and I keep asking myself, does Nigeria have anything to offer them in terms of security, healthcare and education? So here we are, our health sector is in a shambles, our politicians jet out for medical treatment, the poor populace dies in droves, oppressing each other as they plunge to their deaths, oblivious that they aid in killing one another; one choice at a time.

Thought Picnic: Giving Them A Good Piece Of My Mind

A piece of my mind

Seeing a psychologist gives you the opportunity to speak your mind without prejudice and that is what I did when we met this afternoon.

I relayed to her what happened with regards to meeting with her, the social worker, the doctor and Lewisham Housing Services, then I spoke of my expectations making clear comparisons with experiences I had with similar circumstances in The Netherlands.

The gaping holes in the safety net

The fact is the system for handling exceptional cases like mine where I do not seem to fit into pre-defined categories, but have a compelling case worthy of assessment and consideration is disjointed, incoherent and basically a mess.

Thought Picnic: Somewhat slow getting to tiptop shape

Easy does it

I slowly put myself into recovery mode by not exerting myself too much, anything that will labour my breath, my thinking or my situation I have attempted to avoid to devote the reserves of strength I have to getting well quickly.

Obviously, with my serious loss of appetite there were no reserves of energy to do extraordinary things, letting the fresh air in, I have kept in my hotel room, keeping warm and drinking Earl Grey tea by the gallon – I like my tea.

I have taken on no new activities even though there are some things that need tending to, I have just stuck to the routines of work and rest for maximum benefit – contributing to Twitter without being too combative, having telephone conversations in the most demure manner even when I have been so greatly irritated and avoiding the frustrations that accompany emails from people who should be doing what I repeatedly have to get them to do, again and again – I am taking my time.

New hands on me

My hospital check-ups are round the corner but with all that was going on, I could not muster the strength for travel to the Netherlands but as my pills were running out and I could not get the unprogressive Boots’ Chemist pharmacist to read my foreign prescription, I arranged to visit the local hospital this morning to chat about my situation.

The synopsis of my story had already made them eager to engage and help, somehow, I represented one of those rare cases of people who have done the whole nine yards and more regimens of radical medical intervention much of which they had mostly read from textbooks or heard of from historical recounts but never experienced.

I was ushered in nicely, introduced, registered and then called into the doctor’s office where I related my entire medical history without skipping on all the medical terms and the apothecary concoctions that have found sojourn through my body over the last four years.

Pages of notes later along with reading through my medical transcript, we decided on a battery of tests and checks, swabs, fluids and the 7 vials of blood followed with an appointment for three weeks hence and not forgetting a month’s supply of pills.

I’m feeling cold again

I returned to the hotel to work at pace rather than the office especially after the amount of blood I had given. The decision remains mine if I want to move my treatment regimen completely back to the UK and avail myself of additional services to help people with my medical history cope with a whole myriad of issues.

My appetite is still far from back to normal, I could only manage a fruit salad and though my temperature read 35.9 Celsius this morning taken from my ear, I seem to be running a higher temperature already that I have asked for another blanket as I seek the miracle healing benefits of sleep to give me strength for tomorrow.

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.

Get pills for sunny vitamins

Off to hospital

A date set in the future with expectations and anxieties finally arrived and news is anticipated from the life and the living things found in the bloods.

My 3^rd quarterly check-up was scheduled for today and I had arranged to first see the catholic pastor before seeing my specialist. As usual, my journey was once again eventful, so surveyors impeded tram traffic just before my drop-off point that when they freed up the tracks the tram just continued to the next tram stop.

I did not have to walk 10 minutes to the hospital because a tram that goes by the front arrived just in time and that was fine to make my first meeting.

We chatted for about 45 minutes on my job, my work ethic, my spiritual life and basically how I felt about things in general – he was preparing for a funeral service – one of the hospital flock he had known for long had just passed away.

Good signs and progress

Then I booked in at the Department of Internal Medicine where first my weight and blood pressure were measured before I saw the consultant.

Within minutes I was called in and introduced to an intern, the consultant was impressed with my improvement – my feet in regular shoes, my looking hale and hearty, my sense of well-being and much more.

My feet were inspected and for the intern who saw the original pictures she must have been so impressed with the wonders of modern-day medicine – the scarring was still there but the whole foot was healed, the irritation and itching was put down to the weak immune system rather than anything else.

The tale in the bloods was very satisfactory, liver function good, cholesterol fine and immunity factors up by almost 350% but still not where they should be, however, it was a considerable improvement on February where the rate of improvement was hampered by the courses of chemotherapy.

A substitute for the sun

With the obvious indicators dealt with some other things gained some attention, certain anti-bodies had appeared which need further scrutiny in probably 4 months, strikingly, there were other factors that pertained to my race – they had noticed a deficiency in Vitamin D – well we have not had that much sun latterly, neither have I been on a holiday to some of my regular haunts in a while – that needed boosting, the pills could only be chewed, they were that big.

My drug regime would change but I have to choose the time, some of the medicines are being offered as amalgams of other discreet types cutting down the ingestion of 7 pills a day to just 3. One of the side-effects is supposed to be the feeling of being stoned (Better get Dummies Guide to Getting Stoned), so best taken before bedtime – as for the other side-effects I just hope that I am in the very rare few that experience none of them.

The next appointment is set for 4 months time – the doctor in closing said he felt I had improved so much more considerably than he had expected, not to mention that I had gained 10 kilograms in just 3 months.

Much information to take in, the consequences quite dramatic and  there is a life to live, hopefully for the good and full of gratitude to many who I cannot thank enough for their encouragement and support.

Friday the ninth brings thankfulness

Freed to breathe

It was Friday the ninth exactly six months ago; I had just been discharged from hospital, still a very sick man in excruciating pain but with the assurance that we were well on the way to recovery.

It never occurred to me how long the recovery would take or what things I would experience having left that bed on which I did everything for 18 long days.

For me, getting home was the singular most important thing to get away from the food and have a sense of freedom and the air to feel that things were on the up.

The hospital was not ready to let go of me until they had arranged for a nurse to visit daily to dress the fungating tumours of my left foot which had a black deathly colour and my right foot which was painful but not as bad as the other.

Breathing free

Today, I have just completed my tenth day at work, it has been a long recovery period in which a new knowledge of suffering impacted on my existence in want, lack, needs, harassment and vulnerability – I learnt a lot and I am still learning.

I have been blessed abundantly by God, by incomparable doctors and nurses, by my most heavenly neighbours, by dear friends, amazing colleagues, surprising acquaintances, sympathetic strangers and a tolerant system.

Counting my blessings, a lot has been done and much more needs to be done, but I am confident, expectant, elated, grateful, thankful and happy that I can write about it today – skin cancer happened, some things we have to live through, some things we have to live with and other things we live to overcome and tell amazing stories of the power of hope, faith and love.

Thank you all, thank you.

Boldly tell your doctor everything

I tell it all now

There probably is a drug for every type of condition if you can articulate to your doctor exactly how you feel and your doctor is aware of that condition, to offer the best advice or medication to help with that situation.

During the time of my illness and the process of recuperation, I have learnt to be more open about the things I observe about my body, my feelings, my reactions and my comfort to my doctors; there is no time to be embarrassed about having to drop your pants and show them things.

With this kind of information, my doctors have sympathetically heard me and sometimes adapted or modified my medicine to help me get better and feel better about the medication I use.

Healing the pain

The two areas where I have benefited most from the management of my medication in relation to how I feel have been in pain relief and sickness manifested as vomiting.

I think by now we have gotten the reduction of pain down to just using an epidermal patch, which I place on the skin of my belly that releases 25 micrograms per hour of Fentanyl [1] into my body fat over 72 hours.

This required a little adaptation; the patch itself can easily come off, so my neighbourhood nurse gave me sheets of transparent plasters I could place over the patch to keep it fully adhered to my body – that advice came because I freely offered that information of discomfort, not knowing there was an easy remedy to the situation.

Stopping the throw-ups

As for vomiting, that has been brought on by all sorts of things, it was first with the morphine in the hospital, I was taken off that and given pills to handle the pain instead. A change in my medication brought on more vomiting, so I had to take suppositories to reduce the nauseating effects. In fact, the suppositories are still part of my daily medication as an antiemetic.

After my first chemotherapy, I had read up on the side effects and asked if I would have the antiemetic pills for that particular chemotherapy. I was given something similar, but by my fifth chemotherapy, it was not as efficacious as before. I was so horribly sick for days, unable to keep food down or take my medication.

So, at my last meeting with the oncologist, I mentioned this. It was important because it was based on my saying I was tolerating the chemotherapy well, that my dosage was increased from the initial 6 to 8 sessions, and no,w after my fifth, it looked like I was not managing it that well.

What the doctor ordered

The oncologist prescribed Emend aprepiant [2], which, with the other anti-emetic medication I already use, helps prevent chemotherapy-induced nausea and vomiting (CINV). It consists of three pills, the first large dose to be taken an hour before chemotherapy and for the two days afterwards.

Apparently, it blocks the vomiting signals from the brain rather than from the stomach, and I could almost say I feel the battle between my brain and stomach, where I know I would not vomit even though there seems to be every inclination to want to vomit – the wonderful power of chemicals in the body.

Looking through the side effects of using Emend is interesting because it literally has all the ones we know that chemotherapy sometimes causes, like hair loss, loss of appetite, itching and so on, but I must say, stopping the vomiting is probably the better trade-off in the circumstances.

As for drowsiness, well, I have been doing a good deal of sleeping all day, a good few of the pills do cause drowsiness in any case, but Emend is just what the doctor ordered – don’t be afraid to tell your doctor all the truth, it always helps.

Sources

[1] Fentanyl - From Wikipedia, the free encyclopedia

[2] Emend aprepiant

Nigeria: Lost are the arms of right and wrong

Through a window pane

Peering through a glass pane into the world of a country that is kaleidoscope of humanity and the people who live it can be an interesting experience.

Nigeria is as colourful as any subject matter would get and this one paints too many shades and hues to be adequately covered in a blog, but I would attempt something.

A 13 year old was knocked off a motorbike [Source: BBC NEWS | Africa | Threats over Nigeria amputation] by a truck which in turn lead to the loss of both her arms just above elbow – with it comes a story of sadness, intrigue and everything all too typically Nigerian.

Witnesses to the accident caused such a commotion that a doctor in a private clinic was attracted to the situation, admitted the girl to his hospital where he observed she was bleeding profusely that he decided he could only save her life through amputating both arms.

Witnesses say the truck had shattered the bones in her arm that severance was routine, meanwhile the amputation took place without the consent of the parents who had to be called to the hospital.

It has become a police case that has had the doctor arrested and bailed, a sad case because a medical clinic is now closed to business and a bizarre case because the doctor is being accused of amputating the arms for ritualistic purposes.

The accident

The report makes no mention of the driver of the truck or the motorbike and nothing is recorded from them about the state the girl was in after the accident. It is likely people gathered round and wailed rather than helped the poor girl to some medical facility.

The girl contends she still had her arms intact immediately after the accident, which would be interesting because one would expect she would have gone into shock – however, witnesses who might have a tendency to exaggerate could have seen a lot but observed little.

The doctor

He swears that the milk of human kindness and compassion along with taking the Hippocratic Oath [Source - Hippocratic Oath - Wikipedia, the free encyclopaedia] (how old-fashioned) lead him to take on the treatment of the girl without registration or payment.

On balance, the least the doctor could have done should have been to take photographs of the girl and her wound, better still take an X-ray of the condition that would have lead the doctor to amputate.

Poor documentation of state and status remains one of the banes of the Nigerian society and it affects the management of the law of evidence when we rely on just sworn statements rather than corroborative hard facts.

Considering the girl was a juvenile, there would have been the need to get parental or guardian consent for the operation – this could have come from the motorbike rider who was not mentioned.

This was a weighty decision the doctor took, there are places in the world where he would most definitely be struck off the medical register for such an egregious exercise of medical privilege even though he presumably saved a life.

The situation

In most cases in Nigeria, a child that is handicapped is automatically seen as a burden, no one dares to think outside the box and wonder much can be made of what they have.

What a child needs for school are brains which could be nurtured, whilst there could be an opportunity of learning to write holding a pencil with the toes.

Sadly, we have a society that first sees children as a blessing but before they are out of childhood they are viewed of future investments for a lucky break that would take their parents out of penury.

Meanwhile, a child is a help, an extra hand, a servant and almost a slave who cannot complain because once you have provision for food and shelter you have to be the most grateful. Love is a misunderstood bonus; or rather fathers think provision is deep love.

The parents

The story does not say how long it took the parents to get to the hospital before they learnt that their daughter had lost all her arms.

The moment the parents disputed the decision that had already been taken to amputate, they fuelled the impression that those arms were being used in some ritualistic activity.

In certain countries the doctor could be done for a criminal offence that would include negligence.

I would surmise that they could have taken an objective path to some resolution but it became an opportunity to extort money from the doctor, not really to compensate for the child’s misfortune but to cash-in early on what fortune that child was expected to bring back to the family in the future.

When the doctor did not give in their demands but offers a smaller sum of money with help to acquire prosthetic arms for the girl, the police got involved such that the authorities ended up closing his clinic and seizing all his medical instruments – it is not clear what he is being charged with.

The doctor gave the parents the amputated arms and they have since buried the arms near their farm.

A future possible

I do not believe the girl completely lacks prospects in life because of the loss of her arms, we need to move beyond making the child twice a victim, first because of the accident and then as one unfortunate in society.

She might not be able to help on the farm but she should not be taken out of school to lay waste – we need to move on from the concept that arms and hands are a core requirement for living, they are useful and we all who have them might not be thankful enough for their use.

I cannot drive and I remember once when I say a lady who must have had stunted limb growth – phocomelia [Source - Phocomelia - Wikipedia, the free encyclopedia] – of arms not reaching the elbows probably due to the thalidomide [Source - Thalidomide - Wikipedia, the free encyclopaedia] drug issues drive a car without having any special adaptations made to the steering wheel – I might well ride with her, if that opportunity came, without fear.

In the end, the girl is alive, she needs help to realise her potential, her potential is in the use of her brain and her remaining limbs, and she can have a dream to make her a worthwhile and useful contributor to society – Oh God! If only circumstance and most especially her parents would not kill that dream with despair.