Thought Picnic: The Bloody Tales

Sorry about the title, it is not an attempt at blurting out an expletive.

A medical roll

For the past few months, the highlights of my calendar have mainly been a number of hospital visits, many not having anything to do with seeing a doctor, but handling the consequences of a life-threatening illness four years down the line.

I have seen nurses, psychologists, therapists, social workers and doctors, but the approach to my care has been to attempt to address all other attendant issues beyond check-ups.

I will not attempt to make comparisons between what obtains in England compared to what obtains in the Netherlands, though I felt more catered for in the latter.

Differently tardy

The journey to the hospital did not take as long as I anticipated which meant I arrived on time, but it was not another 50 minutes after my arrival before I got to see the consultant.

None of the preambles of weight measurement or blood pressure readings took place, rather, after leafing through my medical notes we discussed the results of my tests which barely budged towards better compared to the last time I was there.

Lab specimen or drug mule?

Another concern I had which had bothered me for almost a week as I relived the horrors of chemotherapy were put to rest though I was being offered the option of running a hamster cage like a guinea pig for some new Big Pharma idea.

Drug trials can put you in the forefront of avant-garde treatments or completely ruin your life; it could be scary. As you survive or expire, your contribution to humanity is the knowledge gained to help others, more pertinently; the experience helps write the prescription advice and the notes necessary for safe usage.

Whilst there is no need for an intervention, monitoring and assessment are of the essence to ensure there are improvements; where the indicators read differently, we could tackle the issues promptly.

For the first time we discussed costs, not so much of my primary medication but of the supporting drugs that I ended up with a cheaper version and later the pharmacist gave me all the drivel about costs, options and much else for mere calcium boosting mastication tablets.

Drained

As I returned home, overcome with fatigue and a rotten headache, it was as if I was coming down with something, yet, I have two interviews tomorrow that I have to prepare for.

The tale of the bloods read fine though it was not as if I felt any better for the meeting, the atmosphere, the discussion or the future. We scheduled meetings for therapy, social services and the next consultation before we parted not as friendly as meetings I had before in the Netherlands.

In this poker game of life, you can only play the hand you have; the card deck is just a future of possibility, though the smart might well bluff their way to take the pot.

It is well, I am well, and all is well.

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: More Tests ...

Of expectations

The day came with uncertainties and the answer to yesterday’s question is, I am sad. The first meeting was laden with expectations, at least that is what the nurse and the psychologist suggested, these people are clued in, they know what to do and they have solutions, the urgencies and immediacies will be assuaged with ease.

I soon became aware that they do not talk to each other and the view that things might have moved on from where they were left soon was discarded – I had to tell my story again, a third time to people who seemingly interact, but the object of interact is not the files, data or notes but the subject – I was the subject in this case.

Apparently, having lived on continental Europe for 12 years and now returned for the UK for one long year, left me rather bereft of some of the rights that UK residents would have been able to subscribe to – it was disheartening.

Of options

The picture painted even got gloomier as my countenance changed, I could feel the welling of my tear ducts but, I held it all back, I am the cast of my macabre drama, I cannot inflict any more hurt on myself than what I have suffered apart from a looming prospect of destitution and vagrancy – has it really come to this? The way it seems, it has.

There is no breeding, class, education, life, luck or fortune that is not represented in the homeless class and they all have stories just as good as mine, if not better of events in their lives that led to where they have found themselves.

The meeting ended with a list of numbers, addresses and ideas but without certainty, assurance or confirmation, I was forlorn. As it transpired, he had enough examples of people in my situation they could not help, I should have asked myself aloud – why am I in this meeting?

Of strangers

I gathered my thoughts in a few tweets as time passed, another 40 minutes before I meet my new consultant; at least that is what I expected.

She came to get me from the reception and as she introduced herself, confusion clouded my face, I had to interject – that is not the name of the person I was expecting to see and no one informed me in the almost 7 weeks since the appointment was made that the consultant had changed.

She was to do his rounds and by interference she had only leafed through my medical notes that appeared to contain the amalgamated detail from the Netherlands, Wales and the new interactions I have had since June.

Of preparedness

Again, by the first question, it was not so much my filling in the gaps but a new narration of the same tale that was already becoming a recital and performance at each gathering, I was not too pleased.

With time, I commandeered the notes myself, linking the data from the Netherlands to the information from Wales, whilst charting a historical progression of the tales of the bloods which on a chart would have looked like a jagged-saw graph, the current readings on a depression after what was the best indicator noted in almost 4 years.

Eventually, we warmed to each other, though not to the level I was accustomed to in the Netherlands, we discussed my drug regime, my options and additional tests.

Of innards

To be honest, I was not keen on being probed or prodded any further today, I was barely keeping up with myself on a mentally distressed level but in the process, we settled for 2 vials at the phlebotomist’s, prescriptions to last 4 months, which is unusual because beyond 3 months in the Netherlands, insurance requires you pay for the extra and then be reimbursed. I did not have €2,700 in my pocket in December when I was last in the Netherlands, so I left with 3 months of medication even though my consultant had prescribed 6 months with consideration of the fact that I was then resident in the UK.

I will also be visiting the imaging department, having secured an appointment for a month hence, I am to fast for 6 hours ingesting nothing but fluids prior to the largest organ in my body scanned – Gosh! I have pretty much really mucked my life up too seriously to unravel in one short afternoon.

In between all this, I also saw the pharmacist who ensured my prescription went ahead to the pharmacy that I did not have to wait as long as 30 minutes to pick them up.

Of life

At the end of all these meetings, I was not in the mood to socialise, I got on the train and made my way home, burdened with an existence that clouded the glimmer of hope I had earlier in the day and smarter for the fact that I refused to take on more than what I thought I should handle in one day as advice from other friends came in.

As I stepped out of the station, a man approached me, “Please can you help a homeless man with some change for a cup of tea?” He said. But for his skin tone, I might well have been looking in a mirror, though, it was a mirror of circumstances looming as I emptied the coins into the palm of his hand, I said to him, “I will be homeless from tomorrow.”

I made for the place I had called home for the last 5 weeks, tomorrow being my last day, found a short break from my turmoil with some sleep and woke up to write this before I start to pack my bags and think of what really will tomorrow bring – there is no point asking if I will be happy or sad, any comfort will do to find a place to lay my weary head.

A walk of healing

Coming a long way

The neighbourhood nurse was here today and he was the first here just after I left hospital, he has paid the most visits and basically knows the most about the progression of the lesion wounds under my feet to date.

We both inspected my left foot and came to the conclusion that it was healing very well and apart from patches of dry skin that were pulled off, the only thing left was for the sole skin to thicken up just as it should be for normal soles.

Critical to his observation was the fact that the wounds which were quite severe had healed over a relatively short time. The neighbourhood nurse is used to seeing and dressing wounds like mine which never seem to heal.

A miracle, no doubt

In my case, it appears the natural process of healing had been speeded up in what one would call a miracle without bating about the bush. When I suggested it was like a healing miracle, the nurse who is generally an agnostic quickly concurred. We agreed his last visit would be on Friday.

I had a miracle working in me all the time and I never really realised that was happening, in the last few weeks, the progress has been quite rapid, I am off most of the pain medication apart from the patch which seems to run well over the 72-hour period without any noticeable discomfort.

I have not crawled round my home for about week, the crawling necessitated by a few areas of acute pain I used to have in my foot, for the first time in almost 3 months, I was also able to wash under running water my right foot.

Walking has been very comfortable, it might end up giving up my orthopaedic shoe after meeting with the consultants today and start using normal shoes from now on.

I still use crutches for support but soon, I might just need a cane and eventually ditch that altogether.

Thanks and gratitude

Great thanks indeed should first of all go to God, there is no way I could have successfully come through any of this without His mercy and His grace upon me, I have also seen amazing advances in medicine and healthcare that have helped me through these times and finally my friends and well-wishers who contributed in ways that leave me in deep gratitude, I just have not found ways to be thankful enough.

My neighbours who cared for me in the darkest times doing the most menial tasks and feeding me at strange hours when I was completely without strength, my dear friend who came to live with me and cared for all my needs beyond what friendship demands – I thank you all.

The only way is up from here, God who has seen me thus far is helping me rebuild my life again, my hopes are high, my expectations are great, my vision is gaining clarity and purpose.

Thank you.

More chemo but not worried

The early bird, I was

It was exciting as well as the fastest time I have been in and out of hospital; it was all over in just an hour and much really was done.

My appointment was for 9:30 in the morning, which was early, I had to set my alarm for 8:00 AM and after 3 “snooze” knocks, I was up and out of bed in 15 minutes.

I had to get my wounds paraphernalia that is the Mepitel silicone film dressing, the absorbent material and the bandage. I have never said that the bandages are self-adhesive, the nurses love those bandages, it means they do not have to fiddle with sealing tape and there is no danger the bandage would suddenly come off.

Quick to the point

With the bus and the tram, I was in hospital by 9:23 AM and within 5 minutes I was called in by the doctor, the consultant oncologist is away in New Orleans on some peer junket as these very senior people and wont to and I have met this youngish affable doctor before.

I hobbled on my crutches to his office and chatted about my condition, the condition of the wounds, the sudden occurrence and disappearance of dysentery over the last week, the couple of time I was so nauseous I was sick in the toilet and my sometimes itchy hay-fever eyes which he thought might be related to the chemotherapy.

The doctors usually require a nurse to do the bandages, but I am already a dab hand at doing them myself, I wanted him to see the condition of my two feet in the hope that I could persuade them not to put me on another course of chemotherapy.

I got out my scissors and snipped of the bandages and he was quite impressed at the technique first and then the condition of my two feet.

Six courses were prescribed

The minor detail I did not have about my treatment was that normally for Kaposi’s Sarcoma six courses of chemotherapy are recommended – my heart sank, but for good behaviour, if that count he has written in my notes that maybe I be let off after the fifth – it would all be well, I am quite hopeful.

The fact was I thought an assessment was done each time to ascertain the efficacy of the chemotherapy before offering another course – you learn.

Immediately after that, appointments were made for Christmas Eve for another date with the oncologist and the Monday after Christmas for the fifth course of chemotherapy, the fourth course is on Monday.

The trick of a prick

They also needed to do a blood check which was quite an express service, I got my number, I was called and I did not have to wait be get to see the nurse, as I pulled up my sleeve the veins are glowing ready for the needle prick, before I knew it, the cotton wool was on my skin and we were ready to say good bye.

She hoped I had a wonderful day, I wished her a rewarding day which gets quite slow in the afternoons and she was going to be there until 5:00 PM.

When she mentioned the weekend, I hoped she would make the best of it and before I knew it I was talking about my guest from Stockholm who had contacted me through my hospital season blogs, who became friends and is now visiting.

The nurse also blogs about embroidery and I found myself giving her the address of my blog page, I hope I get to see hers if she leaves a comment on my blogs.

The compassionate priest

Then, one final thing, I had promised myself that on days without chemotherapy I would visit the catholic priest who came to my bedside when I was in hospital, so after he attended to patient, customer, parishioner – really what do you call someone who sees the hospital chaplain?

He invited me into his office, offered me a drink and we chatted at length about so many things, I kept in mind he had an appointment in 30 minutes and really, I do not want to take up his time on a seemingly social visit.

I however learnt that it is rewarding for the priests too to know that patients they have seen before are recovering well and though there are dangers of getting emotionally involved the situation is a priest cannot really be apathetic in their ministry which is one that should thrive on compassion.

The hospital parish

A hospital might well be a parish, but the parishioners do not have the essential quality of permanence as you would have in a local community, they come and go, they are old and new, they are ill or well and mostly every time, they are different.

One interesting insight in our conversation was about the professionalism of doctor that do not necessarily have to be empathetic and the caring nature of nurses who are involved in the everyday treatment and recuperation process – the latter do always get the chocolates or flowers but the former, go home sometimes with bottles of wine as gratitude from their patients.

My visit to hospital was no doubt very pleasant and fulfilling, it is however another wonderful course of chemotherapy on Monday again – Thank God always.

A second course of chemotherapy

The busy insomniac

The neighbourhood nurse arrived a lot earlier than expected; alright I needed an early dressing of my feet because I was to visit hospital today for a second course of chemotherapy.

This disrupted my morning naps which seem to come after drug-induced nocturnal insomnia that I have had since I was in hospital.

Rather than toss and turn in bed, I productively feed my spirit with inspirational and edifying teachings, music or listen to either of the Elizabethan English version of the Bible of the Message Bible in contemporary English.

The most important result of this is to keep ones faith in the ascendancy such that one does not end up hopeless or in despair, in fact, it is impossible to take on that kind of mindset where what you hear and meditate on is encouraging, inspiring and strengthening the will to not just survive but thrive.

The battle is in your mind and if you cannot begin to create new realities with a vivid and thriving imagination, you can easily be swallowed up in your circumstances and never see a way out. I thank God, I have an anchor that keeps my soul from drift – The Psalmist had a lot to say about encouraging oneself out of desperate situations to a winning spirit and mindset.

Excess baggage for the night?

Anyway, beyond the chemotherapy for today, I was also to see the wounds nurse after many consultants observed the condition of the lesions but could not determine what best to do.

When I finally left home for the hospital, I was a bit rushed for time and riding my bicycle took a bit out of me. I was at least prepared for a night of observation at the hospital, if need be, that my rucksack weighed a tonne.

A change of clothes, my mobile phone, the charger, my net book, its power supply, drinks, sweets, medicines and so on, especially considering I had no chaperone. It is one of those times that your sincerely wish you had a companion of sorts – trying to get my clothes out of the washing machine to the drying rack yesterday was such a herculean task on crutches, I never really completed the activity to my satisfaction.

Be reclined rather than seated

The out-patient oncology department was a maze to get to, up the lifts, doors, corridors, signs and a foreboding of getting lost.

The nurse there was in charge when I took my first course as an in-patient on another floor, it is nice to see familiar faces considering, I have literally gone through the pool of neighbourhood nurses, I cannot remember any names anymore.

The seats were setup in such a way that it had a movable back, a movable seat portion and a movable leg portion with foot rests. It could well have been a tumble drier with the tumbling action cut out.

Needles, pricks, tweezers and scalpel blades

The intravenous saline solution was first setup, I seem to prefer all the needles and pricks on my left arm, and it is easier to look away towards the right than to the left for me.

The chemotherapy trademarked Caelyx is wrapped in aluminium foil because it is sensitive to light and attached to the drip mechanism, you can see the red fluid mix up with the saline solution as it enters the body.

I completely reclined and literally fell asleep when the wounds nurse came. Despite what all the specialists had seen and said, she was the first to suggest that she would attack the lesions directly.

Apparently, there was a lot of necrosis or necrotised tissue on the lesions – necro means dead – this was dried up but rotten tissue that needed to be pulled off with tweezers but a good deal was still attached to good tissue and had to be cut off with a scalpel blade. No small pain, all that, but now I know it all has to come off eventually.

New dressings

As a wounds nurse she really knew what had to be done, it was her specialisation and I note that all specialists were ready to defer to the wounds nurse for her opinion.

She is now changing the dressing gauze from the fat-based covering to an algae-based microbial padding which has silver particles that bond with bacteria, killing it and making it ineffective, thereby helping the healing process and removing the smell.

She called my local pharmacy, had an order put in that would be delivered to my home tomorrow. That is one thing I like about our health care system here, the doctor, nurse or hospital can pull up your details, link to your local pharmacy, send the prescriptions and the pharmacy delivers.

I had completed the chemotherapy course by the time all that was done and I now had to contemplate getting back home on my bicycle on rain-drenched roads. I tried laughing through the pain, I did.

I went straight to bed and that was how it was.

Laughter follows my hospital visit

Back to the hospital

And so I conducted my first visit back to the hospital yesterday under my own steam to have blood taken which would determine the next course of treatment, like additional chemotherapy or how else readings of my blood condition had changed.

When I was leaving the hospital two Fridays ago, I had promised the lady of 85 in my ward that I would visit her and so I bought some chocolates and quite a lot of chocolates for the nurses on the B.06 section of the hospital.

First, I got a blank card where with a thick felt-tipped pen I listed out the 14 names of the nurses and then thanked them for their care, compassion, concern and professionalism, addressing it to the wonderful and amazing nurses of B.06 OLVG.

Mobility by bike and crutches

It is easier to get around on a bicycle but I had to find out how to carry my crutches, I got a marker to mark the points at which the height and elbow grips are set and found I could collapse both crutches to just about 70 cm in length.

I then placed the crutches on the bike load platform which is over the back tyre and held them in place with two heavy-duty elastic bands with grip hooks on either end.

After that I was ready to go, that arrangement was just right, with enough energy, I could get anywhere and when there I could negotiate whatever I had to get to my destination.

Meeting with the nurses

The bloods were done in less than 20 minutes and forthwith I went up to Ward B.06 to see the nurses, this was well before visiting time – apparently the lady had left the Friday before, which was good though I felt bad about not being able to keep my promise.

Immediately, I recognised two nurses, in fact, the first one I saw was the one that gave me a wash, she was off to see a patient, and then I met the one who checked me out and gave her my gifts offering to bring in a Taibo exercise DVD if they felt they were being fed too many chocolates.

One of the doctors walked by the reception and instantly remembered my name, she was happy that I was looking well, and the nurses were grateful, gracious and appreciative, I just felt it was the least I could do and I think every once in a while, I would surprise them with something.

Then I went down to see the Catholic priest that visited me at my bedside, he was called from one of his rounds, we had a chat and again, I felt his visit was very useful and comforting for me and I gave him a little present and made my way home.

I took a long route which allowed me to meditate, sing and edify myself.

Laughing through the pain

Until yesterday evening, each stab of pain or chronic pain was acknowledged with a grimace, a contortion of the face, a grunt or some other reflexive action and I suddenly decided, maybe by inspiration to register every feeling of pain with laughter.

Bizarre, you may say but there is a reason why laughter is supposedly the best medicine, so I laughed through every moment I felt pain, my body being slow to play that game because naturally one defaults to a cry of pain, to purposefully overrule that with determined laughter even when you do not feel like it is interesting.

What I noticed was the pain was no more occupying my thoughts that much and within the 6-hour circle of pain medication where the pain begins to show up after four and a half hours, I have now been able to go 11 and 12 hours respectively between the medications for pain.

When the nurse arrived this morning, he thought the idea of laughter for managing pain was funny but as much as possible I giggled or laughed for the pain. He felt I should have one of my toes checked out when I visit oncology on Friday and he arranged that meeting.

Apart from a few areas where I sometimes need help, like shopping and doing the rubbish, generally, I am coping well at home and also recuperating quite well too.

After my 1st day back

Is that the time?

My first full day at home started with a consecration unto God and thanks for what was going to be a wonderful day ahead.

Parts of the night were sleepless but never without the energy of something comforting, edifying, ministering or soothing from music, through teachings, to messages or Bible books being read.

Outside hospital I also have to learn a new regime of drug ingestion at particular time intervals during the day and combining 4-hour cycles with 8-hour cycles, 12-hour cycles and 24-cycles depending on whether I have eaten, not eaten or am busy eating might well be a boot camp of sorts.

I cannot say I got my first exercise out with the best of flying colours. When I got up, I was at the datum where something had to be taken before breakfast, during breakfast and after breakfast according to the packaging but not as my memory served me when I was in hospital.

Binding the wounds

Anyway, after a breakfast cereal of sugar puffs in whole milk, I downed the medicines and sought my bed again.

I was in deep sleep when I heard some ringing and the confusion of awaking left me wondering if it was my Skype, my telephone or my cellphone and when none responded to touch, I realised it was my door entry phone.

The nurse has arrived to dress my foot, after scurrying around for the treatment notes in which I was described as a friendly Englishman, he got down to it with me offering tips for the best kind of wrapping.

Memories for the embrace

Meanwhile, I was waiting for my 1^st cousin from England who had offered to visit, he being the closest of family to see me. I did not know he was driving down, but he arrived with a friend and gifts along with memories of childhood that lit us all up.

By the time I had persuaded them to a game of Scrabble I was in the kitchen cooking and just them playing. I made a pot of spicy yam porridge called asaro and served them at the game, I even took second helpings as did my cousin – don’t even think about that other place.

The atmosphere was perfumed with the musical prowess of vintage Ebenezer Obey in his earlier juju-music days; it turned out to be a wonderful day.

They left after just over 6 hours to catch their ferry back to London at Calais and I was just a spent that my fingers just fell on keys and persisted because I had dozed off.

The significance of his visit is that he is visiting Nigeria next week and would be able to seek my folk and let them know he had seen me and I am fine.

I found an old 7-day/4 schedules pill box but then with the size of my pills, they did not fit perfectly. In fact, since some prescriptions would be dropping off the cycle soon, there is no need to acquire another dainty little box of tricks because the other support drugs are only to be taken as needed rather than by regime.

I’m home, I’m happy – Praise God!