Two years in: this virus still bites!

Originally this was to be titled “That was the week that was!” – harking back to the “Braden Beat”, Millicent Martin (recently seen on “Grace and Frankie”), “The Frost Report” and those other mid-Sixties satire shows. But life happened and Covid struck! What follows is my recollection of firstly – the week that was – and then the week it became. It still continues as I write. I still feel under the weather and my chest is knicker-tight and sore.

The week in question began on Dunstable Downs with the Bedfordshire South Methodist Circuit Outdoor celebration. It had been off the agenda for a couple of years; but I have fond memories of contending with the cold, or the fierce heat, or the wind and certainly the loos! It is a great witness event and I guess most people feel refreshed and hopefully transformed by praising “without walls”! My friend Martin was my partner in crime – criminal offence to a stringed instrument – in his case Twelve! I went electric – I was in a rebellious frame of spirit – just like Dylan in 1966. I think standing up to the twin accordion attack was a bit of a challenge too far. But we tried! I guess we could have done with a bit more oomph! Thanks to all who organised and set the various wheels in motion. I think I’m bowing out of such events in future: too much anxiety getting stuff ready. We praised God and the message was pertinent and the music up-lifting. I just didn’t feel up to it!

Monday was a “normal” Mr Sparkler gig at the Edwardian – my biggest fan lives there. However because I felt out of sorts I was not quite so much in the spirit of entertaining. My little lady fan was irritating me as I was taking care not to belt her with the headstock of little Martin. Not that Martin! My little six-stringed companion. There was quite a bit of coughing and sneezing and for the first time in almost a year I felt a bit vulnerable – but the show must go on! I was on my bike-tour-bus and I reched back home quite safely but weary.

Tuesday was my big day in London: University College Hospital Haematology department. They supervise our local services. I had been initially referred there in March 2015 when the prognostics of my Leukaemia looked a bit bleak. However that proved unfounded; merely a miss-interpretation of the cytological data. You can read all about it in my Blog of 2015 on Blogspot. My first train trip since August last year when I went to see my brothers and stay with my daughter Anna in Manchester. All went well; apart from me getting to London two hours early! Boy was it hot down there?!?! The Consultant was very clear and set out the possibility of joining a new (very new!) clinical trial. I won’t bore you with all the detail, pros, cons etc. But in a nutshell – my current treatment is likely to become less effective as time goes on, prone to every developing side-effects and very expensive – as it’s open-ended, on-going! The drug I could be offered on the 36 months trial may effectively kill off the cancer, it’s time limited and it seems to have less side effects. However the big issue is that it happens down in London. It would also initially be administered as an in-patient. I would have to wear an intra-venous pump to measure the dose continually. This kit is only in place during the infusion – which only actually takes place over a number of weeks. The three years is for monthly monitoring. I came away with a thirty six page manual and a whole batch of thoughts to share with Kym. All aspects of the journey worked well and I got back into Luton in good time to chill out on my bike back home. I have to say I was thoroughly exhausted.

Wednesday – I got up perky and made the choice of finishing my repairs to the old fences. Basically over the previous few weeks, between us, we’d patched and scratched the fences into some semblance of good order. I took it on myself to paint them with fencing protective paint. No easy task. It was so hot!!! Also I was scrabbling around in the bushes! By the end of the afternoon I sat with a very iced Cider and had a little strum in the garden. I felt a tickle in my throat, a pounding in my head and a tightness in my upper chest. Too much unaccustomed “hard labour”!

Thursday morning came around and I needed to get a Blood Test Form sent from UCHL as they had made an appointment (fortunately on the phone) to discuss my (and Kym’s) thoughts on the Clinical Trial. Eventually this came through on email at lunchtime. In the heat of the afternoon Off I cycled to the Luton & Dunstable for a Blood Test. My word – was it a struggle! Heat stroke thought I. I had tested every day that week and all tests were negative! Any way I got back home in a fair condition and really just wanted to sit and doze!

Friday morning arrived – following a more-restless-than-usual night. I felt confused and tight around my upper chest and throat. Kym tested me – and unthinkably – it’s POSITIVE! She tested herself and she remained Negative. There was much to be done. I had a couple of PCR tests that I’d had for a few months; issued to enable me to get speedy treatment to combat the worst effects of the virus. Unfortunately it appeared I’d messed with them (I don’t recall that). However Kym was able to knock one complete set out of all the components – test me and send it off from our local priority Post Box. The process is is meant to operate that once the Positive is confirmed by the PCR then one contacts the local Covid Medicine Delivery Unit and then these drugs are made available to me (immuno-compromised). However I’d read a Blog by Dr Adrian Warnock on Blood Cancer Uncensored – relating his own experiences in similar circumstances. He suggested to get ahead, don’t wait and get the drugs at the earliest opportunity! So I had to make a couple of calls 111, 119, my Cancer Nurse Specialist and the system kicked in and to spare you our anxious calls – at 5:00 PM that evening we were heading up to Bedford Hospital (the local CMDU). We had a bit of trouble finding this “secret” department but within half an hour I was hooked up to and infusion of Sotrovimab. (sounds a bit suspiciously Russian for my liking!) A couple of hours then back home to bed! Headache, tight chest, sore throat, only slightly raised temperature, I’m not sure about taste and smell – as I was very confused! I didn’t really sleep well as I couldn’t breathe properly as my sinuses were blocked.

During the next couple of days the 111 and 119 followed up with calls to check on me; including my GP Surgery – all pretty reassuring! Night sweats and broken sleep were the order of the night for a few nights.

On the Monday (Day 4) I was experiencing palpitations. It’s something I get from time to time – maybe if I’m feeling more unwell than usual or may be dehydrated. Any way it was much worse than I’ve had previously and it showed up on my Blood Pressure Machine. Another 111 call from which I was referred to a Medic. This then resulted in a call from my GP Surgery again – they’re certainly earning their fee for looking after me! My blood pressure reading were actually fairly OK on that day – the significant difference being my heart BPM which is a leisurely 44 average was bouncing along at 70 something! Hit me with that rhythm stick! The GP who called me was in disbelief as I told her the figures were my norm. She instructed me to book a face to face when I’m clear to have an ECG etc. By the end of the day I had settled down into my gentle groove.

Tuesday 21st June was my follow up appointment with UCHL: a telephone one this time. The Consultant managed to answer our questions to our satisfaction. However by this time Kym was feeling weakened as she was suffering with her own Covid. One reassuring point was that, as it’s a pharma-fully-funded Clinical Trial – I could have a taxi from home to hospital and return. The outcome was that he’s referred me to the screening stage. Subsequently an appointment (video) has been made for late September. I think I’ll put it out of my head for a couple of months.

The next few days passed fairly quietly. I steeled up the mojo and energy to either go out on my bike for 30 minutes or do 3 – 4 K on the exercise bike. I certainly felt the benefit of the fresh air and exercise. I also re-started my normal daily stretching exercises and light weights. It was a continuing case of mind over matter.

I’m now on at least Day 11. I feel better in myself. The issues that still remain – tight chest and inflamed sinuses, fatigue and lack of mojo and headaches (milder now) will ease over the next few days and I can begin to rebuild. I have a self-loathing fear of feeling useless. So I want to get back to the “new normal”.

On reflection, I think I had some premonition nagging me before all this happened. For the few days prior to the start of this tale – I was feeling frustrated and anxious that I’d not completed a few creative ideas that were washing around my brain. I felt a sort of broody presence putting the cork in the bottle of song and story ideas. I guess I feared that the Geni would never emerge. What nonsense get fermented in my aging little grey cells.

Well I’m telling the tale – so I must still be drawing breath. If you’d like to share your Covid tales please feel free to add them as comments. I’m very grateful to friends and family who’ve kept in touch – some lovely photos and videos and chats. Not that I’m up for much conversation at the moment. But rambling Roger will be back; God willing! Thanks for Kym’s care. I hoped that I could reciprocate to some extent when she was at her lowest.

3 thoughts on “Two years in: this virus still bites!

  1. Take care Rog. We are all thinking about you x Also your ongoing treatment for your leukaemia, my love to you both x Rich

  2. I had covid. Not a great experience but i count myself as one of the lucky ones. No lasting effects. A musician friend of mine has long covid and can no longer get through one song another can still play the guitar like ringing the bell (chuck berry) but has to have the words in front of him even though he gas been singing those songs for 30 odd years. No rhyme or reason.. its in the genes

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