THE NEW NORMAL #54 – BLACK (OUT) FRIDAY

There have been signs this week and I’m moderately superstitious so I should have heeded the warnings, but I was too busy with life and Christmas preparation to pay attention. After leaving Derriford hospital upon completion of another round of immunotherapy I noticed a strange, salmony tinge to the sky which, upon driving West towards home, revealed itself to be one of the most glorious sunsets I have ever seen. Lucky for me, I was literally driving off into the sunset from a treatment session that is likely to be my last of 2020 (there’s an outside bet that I will need treatment on Christmas Eve but they’ll have to drag me kicking and screaming) and that felt good. Suspiciously good.

During my treatment I was visited by one of the lovely Oncology team to have another look at this postural blood pressure issue and that will require me to rewind time a little bit for the full effect. Ten days ago I visited another new department at the hospital (Endocrinology, for those still ticking off the boxes in the i-SPY book of medical misery) where I was booked in for a short Synacthen test to see if my adrenal gland is still working. Long story short, it’s not – I was injected with a chemical that stimulates the adrenal gland and my adrenal gland basically said; “nah mate, can’t be arsed”. So, I now sport a dashing medical alert bracelet that says I am both insulin and steroid dependent – for life, yo.

While I was there, I mentioned that my GP surgery had been unable to perform the postural blood pressure test so the Endocrinology nurse willingly volunteered to get it done. The test involves lying flat on your back for five minutes, having your blood pressure tested, standing up and having your blood pressure tested and then staying standing up for another minute before, you guessed it, having your blood pressure tested again. The first measurement was 117/64 which is low but then I’ve always been pretty low on the blood pressure front so no surprises there. The second measurement was 91/62 which is lower still but manageable.

Before I was given the third measurement, the nurse said something I’ve never heard in a medical scenario before – “oh wow, that’s REALLY bad”. This slipped out of her mouth and she immediately apologised but I did wonder what it would be like if the medical profession were more honest in their reactions. Maternity wards would echo with shouts of “Christ that’s an ugly baby”, A&E would be filled with “How the fuck did you get a rubber duck up THERE?” and almost every other ward would chime with chants of “Who has farted this time?”. The rare outburst of honesty from the Endocrinology nurse was refreshing and terrifying, not least because a minute of standing still had started to make me sweat, sway and lose focus on the wall I had be staring intently at. Understandably, the final blood pressure reading was 73/44 and this is too low to be healthy which means more pills, thrills and probably some bellyaches.

All these factors should have raised a red flag but even if they had it wouldn’t have stopped the slightly alarming occurrences of Black Friday 2020. With my wife on the phone and the kids rapidly hurtling down the stairs, I jumped up to attempt an intervention before they interrupted the phone call and got half way up the stairs before my lack of blood pressure meant that my vision, hearing and general sense of control just, well, went. The next thing I knew I was sat at the bottom of the stairs with a sobbing, screaming six-year-old son above me, a panicked wife in front of me and a mildly traumatised step-daughter to the side. I didn’t get what all the fuss was about but evidently I had crumpled like a marionette with snipped strings, slipped down 6 steps and landed in a crumpled heap without noticing. Ironically, this meant that my wife had to hang up the phone to come to my aid, but my intentions were good.

This is yet another example of the things that cancer takes away from you and I’m not just talking about the ability to climb stairs, maintain ocular control or not appear like a drunken fool every time you stand up. No, in this instance I’m talking about the chipping away of one’s confidence but, even worse, the chipping away of my son’s confidence in his dad. The fear and uncertainty in his eyes at having seen his dad collapse (apparently, he thought I’d died according to my wife) will stay with me and makes me feel like I’ve forced him to grow up a little bit more before he needed to. I’m fine though, a slight ‘ouchy’ on my hand but otherwise not a scratch in terms of physical damage.

In other ‘stuff cancer is taking from me’ news, my body is now getting be quite literally unrecognisable to me which is causing frequent moments of hypochondria. Last week I spent a good half hour trying to work out what the hard lumps between my legs and torso were before realising with a mix of relief and nostalgia that these were, in fact, my hips. Clothes don’t cling to my girth in the way they used to, I get cold when I never used to and I find myself hunching under the weight of my big ol’ head (until my wife barks “straighten up” at me like part matron and part sergeant major). My stomach (what’s left of it) makes some pretty unworldly noises and my arse, well, let’s just say that department is far more akin to jazz percussion than the solid and reassuring gong sound I had previously been used to.

Anyway, this is going to be my last post before Christmas unless anything drastic occurs so I ought to end the year on some positives. Throughout 2020 I have amassed countless scans, had one major operation, been for 10 sets of treatment, popped hundreds if not thousands of pills, injected myself so much my belly looked like a dot-to-dot that had been half completed and I’ve lost around 4 stone in weight. However, I have also received hundreds of supportive messages, met some wonderful new people (albeit virtually), smiled to myself and to others more than ever and survived a lot of moments that I wasn’t necessarily expected to (in your face, expectations).

More recently, I have had a scan that showed no signs of cancer and returned to a job I thought I was destined never to return to – albeit via the soulless window of Zoom. I am more prepared for a Christmas I was never supposed to see than I ever have been in the past and have managed to keep the imaginings of ‘future Christmases without me’ to a bare minimum (thanks Sertraline). The funny thing, as positive as all of this is, I’m not sure I would have taken this ending to 2020 had I been offered it January. I mean, if a shady guy approached you as the bagpipers trouped in to Jools Holland’s Hootenanny with an offer you would surely be made to accept it on the basis of “Look, you’ll survive but you’re going to spend most of the year indoors, you’ll lose most of your stomach and pancreas as well as few other organs, you will completely go off tea and be fearful of alcohol and you will do some of the most spectacular shits of your life but you do come runner up in Cornish story writing competition so it’s not all bad”.

Nevertheless, I’m here, my body is beach ready and it’s only November, I can enjoy eating most of the time and aside from my new penchant for body surfing feet first down staircases my son is able to enjoy time with me without any obstacles – I even managed to pick him up this week for the first time since I was sliced open in August and that really was a very, very special moment I can assure you. I used to measure my own success on whether I was doing better and feeling happier than at this point last year and I’m not sure that’s something I can commit to anymore. That’s not to say I am sadder or doing less well but my situation changes so rapidly that a year feels like a very long time indeed. So, like the old football cliché, I’ll take it one match at a time and play the team in front of me no matter what numbered balls 2021 pulls out of the velvet bag (sorry, it’s FA Cup weekend and I’m really hoping for a Plymouth Argyle vs Chorley FC tie in the 3rd round). Anyway, have a merry Christmas, a New Year that is superior to 2020 (can’t be that hard) and thanks so much for reading my ramblings this year. I’ll be back with more tales of woe and joy in the new year as well as some exciting news about a book and the work I’m doing with the people behind My Sunrise, an app for cancer patients in Devon and Cornwall. For now, however, I’m going to close the curtains, light the fire and watch a Christmas movie whilst sucking on an ice lolly. That’s my normal right now.

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