Men's things - XXIII

Ignoring the specifics

I was looking forward to my hospital appointment set for Friday, the 4^th of April 2025, though I seemed to have a different level of expectations, for my last visit to The Christie Hospital was the 9^th of October 2024, when I took my last session of hypofractionated radiotherapy to the prostate gland.

In my euphoria about what the visit might entail, I was already announcing to others that it was going to be a conclusive kind of meeting, ignoring the fact that it was a nurse-led urology clinic. Maybe I chose to ignore the details, expecting something that was not on offer.

I was neither consulting with a doctor nor an oncologist; I was meeting with a nurse from urology when every other consultation I had attended from July last year was with a multidisciplinary team with an oncology perspective.

My engagement with urology ended in another hospital after the referral for the multiparametric MRI scan of the prostate gland, which led to an ultrasound-guided transperineal biopsy of the prostate, indicative of cancer, after which I was handed over to The Christie Hospital.

A name mangled

On arrival at the hospital, I was electronically checked in and ushered into the waiting room through a labyrinth of passages in Department 22. This visit was not as daunting as the very first, the place was familiar enough, buzzing with activity and full of medical personnel and the many who required their expertise.

When the nurse called my name, I heard another mangled version of it, a steady reading of the arrangement of vowels and consonants would have garnered applause for a brave attempt, but it was such that I had to mutter to the hearing of others, that name has been murdered again. However, there was no doubt that I was the patient being called to an examination room.

She offered to have another go at my name with my guidance, if she deigned to get much better, I doubt it could be achieved without a major surgical intervention. Even Brian’s attempts at Yoruba words and phrases bring such mirth, for the jollity he presents, we can overlook his incapacity.

Assessing the PSAs

When the urology nurse arrived some 15 minutes later, it became obvious that this was just an assessment meeting, one to determine how I was coping to the symptoms around radiotherapy and to enquire whether I needed additional support medically or mentally, and to answer any questions I might have.

It seemed they had lost the test results for the bloods taken on the eve of commencing radiotherapy when I attended the planning review in late August. She was using the readings presented in March last year, which on the surface suggested a considerable improvement, but I knew that there was a slight change in relation to the blood work done last week.

The Prostate-specific Antigen (PSA) result was slightly elevated but within range and higher than the result in August, but well below that which set us on this journey in March 2024. We agreed to have another meeting in four months rather than another six months, and I left to bask in the sunshine of beautiful South Manchester.

Lest I forget, I had a conversation with the Uber driver about Men’s things. I find that I am also being asked to share my experience; I might have to create slides to explain the intricacies of the prostate and the reasons for having early investigations and interventions on intimate issues.

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Blog - Men's things - XXII

The chemotherapy is over

Arguing for the last

For all intents and purposes, I was resolute to have today be the last meeting with the oncologist with respect to my planned eighth chemotherapy treatment.

As I had stated before in my blog last week after meeting with my treatment consultant the fact that more chemotherapy had been scheduled beyond the 1st of March was not something I was ready to contemplate or prepared for in any way.

It was supposed to be all change from the 8th of March, signifying my freedom from chemotherapy and my readiness in however small a way or possibly better to seek employment and begin to rebuild my life.

The case made

Thankfully, my treatment consultant met with both the oncologist and the head of the oncology department about his concerns that the improvement of my immune system was being impeding by the chemotherapy and his view that chemotherapy should stop soon enough to begin to see improvements in my immunity.

The oncologists concurred and at my appointment today which was to presage the last agreed treatments they agreed that by the 4th chemotherapy I had already had magnificent response and healing and the other 3 after had simply bolstered that improvement.

The points accepted

So, they were satisfied that after 7 chemotherapy treatments there was now no need for the 8th which had been scheduled for the 1st of March and it was better to give my immune system the chance to recover so as to prevent my succumbing to opportunistic infections.

Before this, I had wondered if I could go on chemotherapy with a cold that was accompanied with violent sneezing and the occasional cough, there was some uncertainty and trepidation but this was such unexpected news.

All the blood test results had returned and everything seemed to be fine apart from the indicators for immunity which were just too low, the next meeting with my treatment consultant in May after new blood tests in early May should hopefully show the necessary improvements allowing for some changes to the drug regime I am still under.

Moisturising the pain

The oncologist was also of the view that I could further reduce my pain management medication and be weaned off it over the next week or so.

The special moisturising cream was prescribed and I was offered words of encouragement as he commended my bravery through the treatment and all the other issues that entailed.

He appreciated that for 5 months my life had revolved around a 21-day cycle of treatment, incapacity, recovery, expectation, analysis and back to treatment again without the opportunity to breakout especially to the challenging issues of seeking work in the light of mounting bills and threats.

Other things for worry

The newest threat today was the least of my concerns, as a traveller I had an iris identification card which should have been renewed since October that I ignored because I was in no fit state to travel talk less of having the means to travel, now the debt collectors are on my tail for the subscription – honestly, that is really the least of my problems.

Unfortunately, the ones I owe the least are the ones pursuing me the most, all those bills will all eventually be paid with the damage that has ensued to my credit rating by reason of incapacity and illness – someone somewhere is making good money out of misfortune, that is the way of the money system we live in.

Thank you, all

The good news in all this quagmire of realities and expected changes for good and better is that there is no more chemotherapy to take, not even a maintenance one.

For that, I am grateful to God, to all the experts and nurses who have cared for me, my loving neighbours, my friends from all the different spheres of life who have all supported me with means, goods, services, encouragement, concern and love – all of whom I just cannot thank enough, but still, I say thank you.

To my creditors who have been so reasonable too, reducing the stress that could impede my recovery, thank you too.

I saw the priest, that is another blog.

The blood in the tales

Hospital days

Hospital appointment days are mainly just like fully given to the hospital, worse still if the appointment is in the afternoon, you probably can do nothing the whole morning waiting for it and once over you are too exhausted to do much with the rest of the closing day.

Today, I met with the main consultant and superintendent of my treatment programme, he is one of the head honchos in Internal Medicine as well as an academic professor in medicine, I read he was working on monoclonal antibodies for his PhD in the 80s – I knew enough about that research to be impressed.

The correct numbers

This was my second meeting with the consultant after I was discharged from hospital but before I met him there was the basic routine of checking my weight which by reason of my shoes and clothes was boosted by 2 kilograms to just over 70 kilograms, my blood pressure and pulse read within the limits of very normal.

I have decided to put no faith in this portable wrist blood pressure meter toys, I had one before I fell ill and it always gave readings that I was hypertensive, it got to a point that I was beginning to believe those readings until the readings at hospital told a more accurate story of normalcy.

The dangers of trying to handle ones medical needs by self-medication and the use of portable customer gadgets in my case was only so evident – some things are best left to the professionals and their well calibrated and accurate machines operated in a supervised setting.

Soon after the measurements were done, I saw the nursing expert who handles the social and emotional consequences of a diagnosis of serious illness and what needs to be done, I remembered her from when I was on admission, before I was discharged she went off on a 5-week holiday to Nepal, she asked to see me after I had met the consultant.

Looking good reading good

The consultant came to get me and was quite impressed to see how I walked and commented on the considerable improvement he had noticed, I agreed that a lot had happened, the lesions had all disappeared by December and though there is still some skin shedding everything feels fine, he later examined my feet.

He felt my treatment was going really well, from all the results that had been presented in the blood tests, I was responding very positively to all my treatments including the chemotherapy.

Significantly, he noted that not all the results he needed from my blood tests had arrived, those tests could take up to 2 weeks to be fully completed and results presented, he was quite curious about what they would reveal.

The other effects of chemotherapy

He said the haemoglobin, cholesterol, liver function results all looked fine but for the fact that my immune system still looked suppressed, the numbers were not encouraging but the percentages had gone up by 50% percent.

This lead to his wanting to curtail the chemotherapy sessions because whilst the evident cancer had disappeared it also had the effect of impacting on the immune system leaving one possible vulnerable to infection.

It was then that I learnt that additional chemotherapy sessions had been scheduled, that was something of a blow to me, for 2 months I believed that I will only have 8 chemotherapy treatments which would end on the 1st of March, it was the basis on which I had made may arrangements including trying to get back to work.

I deserve to know all

I just could not bare the thought of sitting through even one more session after the 8th chemotherapy therapy regardless of how well I was responding to the treatment, I needed a Ground 0 from where I could begin to get on with rebuilding my life – my consultant fully appreciated a prospective employee could not have chemotherapy sessions waiting in the background at an interview.

My consultant for medical reasons as the overseer of my treatment was now more interested in reading better results from by blood with regards to a vastly improved immune system, he would chat to the oncologist about it.

The next meeting with the oncologist is next Thursday, I also intend to make it clear that I am do not intend to continue on interminable chemotherapy treatments that do not have a clear idea of when it would be concluded – for crying out loud – I am entitled to know how much I have to endure without being tortured by trickle-down information.

It will be 8 and no more than that, I am NOT emotionally prepared and I do not intend to prepare myself for any more than that.

Maintaining the status quo

The readings from the blood tests also indicated we would not change any of the medication I am on till when we meet in another three months, meanwhile, when the other blood results arrive, I will get a call depending on what it all means.

So, another box full of prescriptions are going to delivered soon, this also provided the opportunity to talk about the eye irritation I was having for which I received a gel and the sudden attacks of acute claustrophobia I had about a month ago – the panic attacks as he called them might be related to pain management but if they returned I was advised to seek medical help.

Pain management was left to me, I could decide to halve the medication and consider the effects whilst I try to wean myself off the pain medication – we would just have to see how that pans out.

With all that done, we scheduled new appointments, completed the prescriptions, shook hands and said goodbye.

Miscellaneous matters

The nursing assistant was busy, so I had to wait for a while, it was then I learnt that I could find a full range of support services through the hospital if required, something I never knew before.

We talked about her trip to Nepal where she did a lot of hiking and mountaineering, touching on the subject that Westerners seem to have seriously organised working lives that they chose to go on busy chaotic holidays as a form of relaxation – an interesting perspective I’ll say.

After that, I called in on the priest, we did not have much time to chat, but I gave him the basics, I have a proper appointment booked to see him when I return to see the oncologist next week.

Whilst I was quite happy with the general results, I was taken aback by the issue of the still suppressed immune system and the additionally planned chemotherapy treatments – I expected a lot from today, I am grateful for what I already have and thankful for how far we have come – hospital visits end up as long tales and the detail is almost always in the blood.

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

The tolerance of chemo means more

New routes to hospital

Christmas Eve saw another visit to the hospital to see the oncologist, usually, I see the oncologist the Friday before the Monday when I go for my chemotherapy sessions.

The bus timetables changed over a week ago and with it the bus routes also changed such that the easy one-changeover trip to the hospital was no more an option.

Now, I had to take the tram and then a 5 minute walk to the hospital, since I no more use crutches, it was not that difficult a trip to make.

My friend of 25 years had arrived the day before to spend Christmas with me and offered to accompany me to the hospital, having company at hospital is always good.

We arrived for my 14:45 appointment some 20 minutes early and eventually got called in by the junior doctor I saw 3 weeks ago.

Not now let off

I thought I would get the promise of being let off chemotherapy, he was quite impressed with the improvement on my feet, all good young but thin skin, looking healed but he wanted a second opinion from the consultant oncologist.

He came in and he also expressed his happiness with the improvements which he attributed to my responding well to the chemotherapy, he then asked how well I tolerated the chemotherapy.

I honestly told him I just felt more tired and sleepy but suffered no other side effects, with that he suggested that I have up to 8 chemotherapy sessions.

Whilst I was quite disappointed the logic was that if one tolerates chemotherapy that well then more should be given rather than less because it makes the treatment presumably more complete. If however, I was hardly tolerating the stuff then there would have been a case for discontinuance.

Meeting the priest

Then I was put in the emergency queue for blood tests which basically had me going through as I submitted my forms to the blood clinic.

After that we went to see the catholic priest who I make a point of visiting on the oncology appointment days but never on the chemotherapy days, he was about, that was good because I had a card and present for him.

We had a lovely talk and then he offered to pray for us all, his prayers were quite deep and very meaningfully aligned with the Scriptures, in fact, my friend and I were quite taken by it all, considering Pentecostals seem to think they have a handle on prayers – one has to give some credit to Catholicism, and I have, the more, since I met this young priest.

Shopping for Christmas

On leaving the hospital, we shopped at a Ghanaian shop for condiments, food and ingredients for Christmas, got some meat from a Halal shop and eventually returned home.

I later went for the Christmas service, which was a bit too funky for my liking, clapping to Christmas carols with guitars and drums in the background are just what my kind of traditional Christmas is about, I suppose, I would be looking for something more sedate next year.

What a day it was.