Clinical Trial: my Hampstead “holiday”

Instead of taking Annual leave I’ve probably taken leave of my senses! I don’t mean that seriously: just poking fun at myself. Well these good folks are having a great time poking me with many a sharp object; sticks apart!

What’s it all about? Well you ask! Many of you know that I’ve been living (well) with Chronic Lymphocytic Leukaemia (CLL) for a good few years. Living “well” – because that is what I (well “we” actually) have been trying to do since the last days of 2014. However during the last year or so the side effects of heavy medication seem to be taking an increasing toll on my drug-wracked frame. I approached my local Haematology Consultant and begged the question “If my blood counts are “near-normal” why do I need to continue on this effective yet very expensive and potentially diminishing in efficacy over time?” The consequence of her answer was to refer me on to the University College Hospital London: actually the supervising body of Luton and Dunstable Haematology.

A prompt appointment was received and within a couple of weeks I was sitting with Dr Jasani. His offer was a Clinical Trial of a very new drug which had the potential to offer a “cure” for my CLL. It had risks as this was the first human trial and safety considerations were of the utmost and dosing would initially be in hospital for four or five nights. He kindly printed out a 35 page document for myself (and Kym) to study and consider our response. I had a deep inner belief that this would be worth exploring and was in tune with my vision of living well without CLL!

We discussed and felt it was, at least, worth taking it to the next step. I agreed to the screening tests; including the thrill of another Bone Marrow Biopsy. Arrangements would be put in place.

Next thing we knew we had Covid – I’ve written about that :-

Once cleared for Hospital attendance I spent most of a day at the Royal Free Hospital and went through the range of tests; including the Bone Marrow Biopsy (everything you thought it could be!)

When Dr Jasani rang to inform me of the test results, a couple of weeks later, I was almost fully expecting a “No” as I thought I wouldn’t be ill enough. However the good ole bone marrow, although not over-run with cancerous cells there was sufficient disease to make the trial. I agree to go ahead. I was rather surprised that it would start almost immediately. Mind you having my initial CLL diagnosis on one day and then starting Chemotherapy the next should have given me a similar expectation.

The few days prior to coming to Hampstead were spent organising and re-organising appointments, visits, medication – a lot when you’re getting on in years! All family and friends were really supportive. We came here full of anticipation (anxiety?) hope (wishful thinking?) and courage (divine assistance?).

From our arrival we were treated with great care and efficiency. I wish I’d paid more attention to how I was instructed in the use of the buttons and switches for the lights etc. Still I managed to catch up by 03:00 on Tuesday! A really skilful team fitted an 18″ PICC line and several times my “vitals” were checked and I was found to alive and (in a currently non-arthritic condition) kicking!

What on earth?
Cognitive impairment test

I have to mention the catering. You’d expect that from someone with twenty five years of large scale catering management; including a couple of spells in NHS hospital management. Ha ha, those were the days when there were whole Administration empires, Hospital, District, Area and Regional Catering or Supplies Management teams, boy the NHS is a lean, mean admin machine nowadays! The staff at the sharp end have to do it all. Also it’s a system in transition – the old paperwork giving way to all digital. Wow, some clever, hard-working folk there.

Chicken Supreme
Chicken Supreme and Paul Whitewick entertaining me during lunch – check out his Youtube.

Paul & Rebecca Whitewick’s Youtube Channel: –

To my chagrin I was the manager who removed the excellent and homely Ward Waitress service in Hereford General Hospital and replaced it with a Plated Meal delivery system – all in the name of financial economies – it was never quite the same! I digress!

Who's in the frame
Who’s in the frame?

Food is excellent and choice is wide. The catering staff are caring, courteous and efficient. Nothing seems any trouble. I feel guilty to ask. I acknowledge it’s a Private Patient wing and I’m not personally paying – although I’m laying my life on the line for others. No political “how d’ya do” here today.

When the nurse who’d been around all day clocked off at 8:15 (at least 15 minutes unpaid overtime!) I felt really lost. Kym was far away at home – although we had chatted a couple of times. I realised how much she gives framework and purpose to my day; particularly the evenings. I eventually turned in at 10:00 PM, not knowing whether to put my pyjamas on! How pathetic! I didn’t know how to switch off the bed lights; what a fool I’ve become! The air handling, which was merely ambiance during the day, was like a train rushing through the room, with it’s cold draught. Eventually sleep came probably about 10:30.

At midnight I was awoken by a charming Nurse who had to test the PICC line and then attach some hydrating drip. I was awake. I hadn’t the nerve to ask him about the lights. Fifteen minutes later I had to find the courage and the equipment to call: Huxley needed to pee. Huxley was attached to a pump which was plugged into the mains! All was resolved and with a half empty bladder I fell into a sleep only to be awoken by an alarm. There was a kink in the drip-line. Called the nurse – he sorted the pipe and I was allowed to go and complete the bladder business.

03:00 and a different nurse came to check my vitals: still alive! I plucked up the nerve to ask for the lights to be sorted: job done! Sleep came and was sustained until I was awoken to check for signs of life about 06:30. Still alive and once again the imperative for bladder relief. However in my Urological condition it is sometimes a fine line between urgency and retention. This morning I was a slow starter! Never mind the drip pump was put on battery and I was free to drag it wherever and when ever.

Breakfast: more coffee please!

I’ve probably over-shared a much of Day One – but I’ve not broken any Non-Disclosure or Confidentiality arrangements. This has actually been therapeutic. It’s kept my mind focussed away from any discomfort or derangement as the drugs are infused or they pull more blood from my flabby veins. I’ve really appreciated all the messages, photos, calls, and kind thoughts. Keep in touch. More from me tomorrow.

K and R
Great days in the Greater Manchester area

Your friend, Roger

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