On the milestones of health checks

A schedule ahead

The highlights of my year or rather the more obvious plans scheduled far ahead in each year for over six years now has been my appointments with consultants.

People with vast medical expertise who I face on many occasions to discuss the state of my health, what discoveries have been found, what diagnosis has been arrived at, what the prognosis is, what prophylactic or therapeutic course of treatment is available and eventually what decision has been made in the end.

The cosy conversation

Whilst it is literally impossible to affect the bedside manner of certain dour and boring doctors, and I have met a few, in the main, I have met quite outgoing, understanding, engaging and interesting consultants. This makes for a better environment to discuss issues and many times things in a broader context of life, livelihood, and living.

I get on well with consultants who despite their status, achievement and authority have a listening ear, a sympathetic mien, and a completely unprejudiced view, regardless of what the subject becomes in our conversation.

Many faces seen

It is a bit disconcerting that in England, I have rarely had the pleasure of meeting with consultants that have been assigned to me at the times I have booked my appointments, which is quite different from meeting consultants in The Netherlands or in Wales. Maybe a better scheduling system is required, however, I am told that is how the department is able to attend to a wider number of patients.

On Thursday, I was in hospital and again, I saw another consultant, I always do my research about consultants, see what they qualified in, what their research projects were, review academic, research and professional papers they have written and what conferences they’ve contributed to.

Be read up

At one point the consultant had to accede that I had done considerably more research on her, her background and on some of her personal life than she had on me with the little time she had to glean through my medical file. It has become common practice to elicit my medical history from me than wade through physical or computer files, I am comfortable with that.

In my view, it is incumbent on a patient to be versed with their condition so as to be able to give knowledgeable information and most importantly, you can ask better follow-up questions in relation to how the discussion develops. This helps ensure that any decision made with regards to medical expectations and outcomes takes into consideration your concerns, your anxieties and also your expectations too.

A glad finishing

Beyond the medical, we talked about professions, hobbies, travel and the general things before I was booked for some tests that included a visit to the phlebotomist and two future appointments to review my situation.

I do look forward to these hospital visits and the more prepared I am for the consultation, the better I feel afterwards. I always take notes and in particular the key indicators that come from the blood tests, which gives me a general indication of what my health condition is and so far, I am doing very well.

It is easier to take an Uber cab ride to the hospital than getting one back and I have on occasion ended up getting on a bus going in the completely wrong direction as I did on Thursday. It didn’t bother me, I just got back on the bus at the terminus and rode back until it got me to the ethnic minority superstore where I stocked up on ingredients for my local cuisine before getting back on the bus on the same route that got me back to my street.

Thought Picnic: Nothing matters more than sleeping well

All worked up

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

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

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

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

All mixed up

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

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

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

All loved in

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

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

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

All slept well

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

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

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

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

Thought Picnic: Facing it alone again but it is well

Sent forth to bear

Just over 13 and a half years ago, in a foreign land, amongst strangers, I bore with stoicism and fortitude the heavy news of a grave diagnosis that left me comforting the bearer of the message.

Sometimes I wonder what strength and reserves come to the fore when faced with all sorts of circumstances, the ability to see beyond the situation whilst having to go through the many tough battles that have become interesting milestones in my life.

In terms, it probably goes back to when my parents thought the best way to toughen me up was to send me far away from home at the age of 10 to sit common entrance examinations for over 4 months to live between relations in the South-West of Nigeria from the north.

Ever-increasing distance

Since then and when I finally left for boarding school at 3 months short of my 11^th birthday, I had literally left home and with that was the emotions and the life that has been singularly charted since then. My general welfare from the perspective of my parents and my guardians had simply been monitored through my academic reports and my behavioural development.

The result inadvertently has become a tenuous link borne of the relationship that was barely nurtured over my first ten years and the rest over conflict, disagreement, disappointment, anxiety, surprise and fleeting interest.

The fact is, no one in my family has the faintest idea of the reality of my life beyond the third week after my tenth birthday, we have increasingly grown distant from then, whilst they have only been affected by episodes of illness, of failure and of delinquency, the causes of which they never really bothered to explore and I just gone on with my life. With hindsight, there were periods of serious depression for which I got no help.

The walk on the wild side

Yet, as a result of their investments in the lives of others, I have been catered for and mentored by people who seemed to have given me a greater purpose in life and the courage to follow my convictions. The moment I had the opportunity and the ability to make my own decisions, I grabbed it and have never relinquished it.

It, however, does not get easier to face the challenges of life alone, but they are too far removed from my circumstances to be intimated and involved when new situations arise, that devolves to friends who are more acquainted with things as they stand today.

Maybe, we could have laid more groundwork for something more meaningful, there is a lot of blame to share amongst us in the scheme of things.

It is well

Today, I face something I am not as prepared for as I would have liked to be, not that any course of treatment presents a fanciful taste like sucking on sweets, but that is the way things are. When I attended 7 sessions of chemotherapy over 5 months in 2009/2010, I only had two of those sessions with friends accompanying me, the rest, I resolutely attended meditating in a reclined position, looking forward to the last session which would have been the eighth.

I am promised, it would neither be as gruesome nor as uncomfortable, it would have its discomforts, but they will be manageable. I may be going there alone, what I should avoid is the spectre of loneliness.

As they always say, by way of encouragement and support, ‘It is well’.

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.

Hospital Date Six

Preparations and getting out

Being much too much of a night person you find that making early morning appointments literally upend your scheduling as you fret and fidget about being fresh and ready for the day.

I had planned two meetings one after the other with the hope of squeezing in two unscheduled ones with my treatment advisor and the pastor at the hospital.

These days, it is better to crowd out the day than spread out the opportunities for interaction into many days.

With that introduction you probably have noticed that it was my 6^th quarterly meeting with my medical consultant and we were scheduled to meet at 9:05AM.

With not much sleep had, the alarm went off at 8:00 not that I was asleep at that time, but I did feel like I should be asleep. Getting up, I cleaned up, ironed a shirt, dressed up and made for the hospital by bicycle, arriving at 9:08AM.

Tipping the scales too high

I was called soon afterwards to have my weight and blood pressure measurements taken, I stepped on the scales and as the digital figures came up, I had to cover my eyes; another 4 kilograms since the last time, it must be my shoes – Not good.

My blood pressure was normal and noted for me to present to my consultant when we meet. I did not have to wait another 5 minutes when he came out to get me warning me that he had an intern as usual – I told him, I am not bothered, I am quite glad that my health and its progress excites enough interest to make it a subject of study.

We shook hands and I took a seat as we began to chat about things in general, the work situation, my health and state of mind, how I feel about things and so on, before we returned to the business of the day. I produced the slip of paper with my weight and blood pressure measurements to which he opined that the weight is good as long as I do not add another 6 kilograms.

The tales in the blood

My blood test results were looking really good, the indicators were a lot better than in December and more importantly we had exceeded a long awaited threshold with regards to my immunity.

That was welcome and uplifting news, I felt quite warm on the inside about that as we discussed the subject of Vitamin D and the Dutch saying that children take supplements to help their bones grow strong in months with an R.

I said, the best thing he could have done for me was send me on holiday to the sun as a prescription to which he replied there will be queues at his door with people looking for a similar prescription.

He thanked me for the present I gave him at Christmas, wished me well and we made a new appointment to meet in just over 3 months.

Other matters

I got the nurse to print out my last 3 test results which had a section saying the number be multiplied by 1.21 for blacks (negroide in Dutch) – a research thing I have to do.

Meeting my treatment consultant I asked for recommendations of Yoga classes and possibly some physiotherapy for my weaker leg. She saw through me thinking the physiotherapy would be better, but that is harder work but in any case we’ll try Yoga first.

I then got to see the Pastor just as they were breaking up a meeting of inter-faith counsellors of the hospital – the conversation was light, interesting and allowed for me to get a few things off my chest.

That just prepared me for the next meeting down the road to see a work coach to talk about issues for employment, assistance and advice.

More to come as the day goes by.

Hospital hierarchies with clogs

You can read the writing

Despite the constraints and the infirmities, I think my observations were keen and I expected to be informed all the prognosis process, the options available the decisions to be made, how they would affect me and a record made of my consideration of the issues.

Whilst the doctors’ notes were in Dutch, I did not see the Anglo-Saxon practice of unreadable scrawls only readable by diviners and members of some special freemason’s organisation with special codes.

The details were clear to read and very legible, the communication simple so that all interested parties never had to seek second opinions of the notes to gain understanding.

So busy for importance

The main professor in charge of my treatment is a leading authority in his field in the Netherlands and that means he is in high demand and difficult to book appointments with, but it was always a pleasure to see him.

In fact, I commiserated with him acknowledging that his high position means he is very important, very relevant and for patients offers some confidence that they are in good hands.

Looking up to the master

I could not help but notice the hierarchies and structures in the hospital, at the out-patient departments; a receptionist to book you in and place your file in the queue, an usher to take you into the doctor’s surgery, there is a possibility that the usher can be the porter and cleaner for the office.

Usually, the doctor is not in the room but has to be summoned, the doctor probably moves from room to room. There is a co-assistant too, an intern or student that understudies the doctor. In some surgeries, the doctor has a backed seat whilst the intern seats on a stool.

We are all introduced and the doctor pulls u your details on the computer and fills in a form catering for your visit. If you are to be closely observed, the doctor first looks then the intern looks and is asked for an opinion before the master explains or expounds depending on what the intern was able to say.

This close mentoring is quite interesting and I think it is in many ways necessary for interns to be involved without necessarily taking any responsibilities. Apart from the ophthalmological department, the decision was never final until the main consultant was first consulted and in some cases visits to observe.

The team and more

After that, the doctor explains in good enough what is to be done, completes the forms and bids your Godspeed.

At the bedside a doctor and an intern usually visits with the ward nurse present to take the bed-pan instructions, you probably would have the same doctor for a maximum of 3 days before a switch and new introductions.

When the professor or chief consultant visits, sometimes, no more than twice a week, it is a retinue with 3 or 4 other doctors who look intently on the master and rarely interject in the conversation except where they are directly asked to comment.

The decisions usually go up to the consultant, the doctors, suggest and discuss then confirm with the consultant.

You have access and hence control

I was glad that the hospital was always forthcoming with information of all my drug options, the regimes available, the possible side effects, how tolerable that would be and what I felt about the situation.

They also always wanted to know if I had questions, if there was more that could be done to help my comfort, ease the pain, and change the options and many other seemingly trivial things.

They always provided detail about the doctors and I could do additional research and ask further questions, I was never in the dark.

Finally, there were quite a good few people in modern clogs; I suppose they are comfortable, clean and easy to manage.