“The Only Way is Up – Baby!”

Never did I, in the late 1980s believe I would use a lyric from the terrific Yazz anthem as the title of a Blog. In fact never did I conceive of the idea of a Blog. I was familiar with home computing: games and Tassword etc running on a 128K Amstrad CPC 464. Yes you read that correctly 128K: neither Gigabytes nor Terrabytes yet to be filled. And software thrillingly loaded from a cassette tape before my, then, wife bought me a disc drive peripheral.

By the way, the widget below is an opportunity to bung a few quid to Leukaemia Care.

My word, can I ramble!?!

But before you adopt the cloak of judgement spare me a merciful thought – I’ve been through the mill. Admittedly I’ve had a week to recover – but it’s not been a stroll though the “green pastures” of an Autumn meadow – although we did do that the other day. It hasn’t been the unblocking of my creative impactions – although I have picked up the guitar and laid down the guide tracks to a couple of “back-burner” songs. I could go on and on about the paradoxes experienced during the last six or seven days. Is it only that long? On Wednesday the week so-far seemed at least a fortnight in duration.

Currently (I’m in the present tense here!) this week is panned as the furlough between Cycle One and the forthcoming cycle Two. Oh Boy did I have plans!?

However following a very painful and difficult Week Three my body was so stressed that it responded in the way of last-ditch self-preservation – Urinary Retention. I’ll spare you the details – because it took me to my lowest point so far: I’ve had a few! The expert opinions are that it’s not a direct consequence of the Trial Drug – but most likely a side effect of the Steroids. Fortunately the medical team pulled out all the stops and in a most timely fashion ensured I was given the relief of cathertisation!

I’ve run ahead of myself! I need to take us all back a couple of weeks. When I set out on this adventure I thought I would produce a daily Blog with photos, humourous anecdotes, deep spiritual insights and wisdom and whit. As you’re, no doubt aware, that lasted two days! Steroids kicked in and my brain checked out!

To recap – week One – as in-patient finished actually on a high! – eventually! Because of transportation issues I was left stranded in Camden – no taxi to be had for love or money. Kym had the divine nudge or presence of mind to contact our friend Ida, who is well experienced in driving in London. Ida and Diarmuid most kindly drove down to rescue me: God bless them. It’s scary in traffic in London – due in part to all those darting Deliveroo drivers and Uber foods daredevils. Blimey – never again will I drive in London!

Week One came to a close in relative peace of mind; not good sleep yet. But the vestiges of a human being!

Week Two went pretty well. The Steroids had some detrimental impact : mainly ruining both taste and appetite and adding the bonus of constipation! I have to say – I can’t recall very much about it at all. In the best way – it came and it went!

Week Three was slightly messed up because of the Bank Holiday: ha when you have my age and lifestyle every day is a blooming Bank Holiday! The consequence of this was that the prescribed cocktail of Trial Drug (Full dose this week) wasn’t ready: it is only prepared by the Special Pharmacy once the appropriate Blood and Health Checks have been completed and documented. With much hanging around it was after 16:00 hours before the pump could be primed, the dreaded Steroids infused and the monitoring clock was set ticking. As I have to be observed twice before being released back into the World – the decision was made to keep me in overnight. Initially I was not happy but subsequently appreciated the wisdom of that safety initiative.

I had no toiletries, clean socks or pants, pyjamas – nothing much in fact. By 19:00 hrs I was tucking into a Butternut Squash Soup and Fish Pie and watching a Sparrowhawk on the concrete balustrade outside my Twelfth Floor window.

The kind and efficient nursing team provided all. So far so good! A couple of episodes of Rev and I was bound for sleepsville.

When the Observation Team came around Midnight I was shivering, hot and cold and it a right tizz. I can’t remember much of what was going on but I did feel a bit more comfortable. They increased the Observations frequency to every two hours and a Doctor called. My Blood Pressure was now low! At least no further Atrial Fibrillation! Unknown to me Dr Jasani was called and he arrived for the next Observations at 04:00. He seemed hopeful and I felt reassured and settled. I even slept again for a couple of hours. The whole team at Royal Free have been wonderfully caring and supportive and trying to give me the easiest experience whilst following strict Clinical Trail protocols. Also thanks to all my family and friends who have found me in their hearts and minds and at the very least dropped a little encouraging word.

I had cried out from the depths of my being: not in vain! Once again I felt enfolded in the kind, merciful, healing arms of our loving Saviour.

I wrote and recorded this song a while back – using Psalm 77 as my inspiration . . . give it a click! It’s a bit of a bluesy ole thing. Perhaps it’s a bit of prophesy too. (or possibly heresy!) Oooo I’m a one!

In the morning I had a fruit platter and coffee for breakfast and awaited the visit of the Haematology registrar.

She passed me fit and I toddled home. An uneventful journey. Once at home I fancied just a little food and drink but that dreaded nausea (this time more likely from the Trial Drugs) and horrid taste together with absolute fatigue kicked in. No food – just sleep please. I think I pressed Kym to her wits end!

I’ll spare you the blow by blow account – I was pretty much out of it and it’s a bit upsetting to try and remember the sequence of events and feelings and discomforts. Dr Jasani and his team called a couple of times during the next few days and arrangements were in place for the first withdrawal of the pump. I was looking forward to that. I was also feeling a fair bit brighter; although far from well.

Now’s probably a good time to go and get a drink: cuppa or something stronger – you might need it!

That Sunday evening was unremarkable and peaceful until about 01:30. Things took a turn for the worst!!!!

More to come . . . . . I’m going to tease you. well actually I’ve run out of steam! I hope I have some more energy this week to continue – because it (spoiler alert) improve – once of course after hit the pits!

Your friend Roger