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.

THE NEW NORMAL #53 – IN THE NAVY

When I was about seven or eight years old, there was a competition at school to build a vehicle that would self propel itself across a short table top course – fastest across the course would win a prize (a Curly Wurly was involved if memory serves correctly). Most kids went for some sort of rubber band and propellor option or launching the car with a ramp but I chose a singularly odd method which involved filling a yoghurt pot with stones, attaching that with a length of string to my model car and then dropping the weight off the edge of the table. Zoom. Now, as a prototype for a real car this had lawsuit written all over it, but I won that bloody Curly Wurly by a mile and the car smashed into smithereens.

I have used the same method of propulsion throughout my life to get over my shyness and anxiety – everything from volunteering to be the singer in a band or the listing editor of the student magazine to applying for (and getting) jobs I am in no way qualified for. It was with this tried and tested method that I returned to work (albeit from home and a couple of days a week) and it terrified me, if I’m honest. How women do it with maternity leave I’ll never know (huge respect on that front) but returning to work when you’ve been out of the loop for 7 months is hard enough, doing it when a pandemic has changed the world around you is something altogether different. That said, once you see some familiar and smiling faces staring back via a Zoom screen and you start to remember all the acronyms that are lodged somewhere in the darkest recesses of your memory, well it suddenly doesn’t feel so daunting.

Was I physically ready to return to work? Hell no. But my mind is a yoghurt pot full of stones and sometimes my body just gets dragged off the side of a junior school desk in the interests of progress. That’s the funny thing with recovering from a major operation, you think you’re doing OK because you’ve managed to dress yourself, have a shower without falling over or keep all your food down for a day. But then you try taking things to the next level by picking up a moderately  heavy box, sitting in the same chair for a day or focusing on a screen to read an 11 page document and you remember that they said it would take 8-12 months for your body to recover from the trauma and this is only the end of month 3. Mentally speaking I am keen for purpose and challenge but, as I say, my mind is still a yoghurt pot full of stones with a sole purpose of dragging my body on to the next day and the next so there is still some refinement to be done in that area.

Talking of refinement, I have been particularly sluggish and sleepy again over the last week which coincided with being from one steroid (Prednisolone) to another (Hydrocortisone/Hydventia). The reason for this change is to find out if my body is still producing any cortisol of its own accord or if I am to be entirely reliant on substitute medication for the rest of my days. The slight problem with this switch is that I was on 10mg per day of Prednisolone and this translates to about 80mg per day of Hydrocortisone, but I was only prescribed a dose of 20mg per day. The effects were pretty instant as I found myself living a groundhog day of Boxing Day proportions where I just wanted to nap and listen to comforting TV all day (my eyelids were too heavy to actually watch the screen). Needless to say, my dose has been upped to 40mg which has had an almost immediate impact but the proof will be in the pudding when I go for my synacthen test in a week or so (you can either Google synacthen or wait for the next instalment of the blog).

Another new feature of my life is occasional black outs which may be linked to the lack of cortisol in my body which regulates blood pressure – it’s all connected you see, the body is clever like that. The experience has been repeated at least three times where I get up to do something, move a few steps and then have to hang on to the wall or door frame to prevent myself from falling over as my vision completely disappears and I just, well, go. I’m not sensing anything in the room around me and I have to be brought back by someone else which is disconcerting for everyone involved.

The first time it happened I was just walking to the kitchen from the lounge and managed to anchor myself on the door frame. The second time was more traumatic as I jumped up to deal with a sobbing child stood at our bedroom door in the early hours I managed a few steps before losing my balance and falling head first in to the wardrobe like someone making one last desperate bid for Narnia – this did not in any way help the sobbing child or my sleeping wife. The most recent incident occurred when a neighbour popped by to ask for help jump starting her car and I managed to open the door and say “hello” but then I don’t remember anything before hearing the same neighbour rousing me from my standing slumber saying “Roland? Are you OK Roland?” with concern in her voice. The experts seem to think it might be something to do with low blood pressure not coping well when I go from reclining to standing and moving too quickly so I have to undergo a postural blood pressure test (again, more next time). 

Despite all of this, there has been some good news recently and it almost snuck in unnoticed. A telephone conversation with my key worker centred around my dizzy spells and cortisol deficiency before the phrase “oh, I’ve got your scan results here, do you want to hear them?” was tossed casually in. This was the first CT scan since my big operation so the results were important and, largely, pretty positive but they come with a caveat that were are still in the early days stage of the post-operative period and everything inside me is still mixed up, like sediment slowly settling in a dirty bucket. Essentially, the nodules on my lungs have basically gone, there doesn’t seem to be any residue of the tumour left over and all my remaining vital organs (Liver, Kidneys, Heart etc.) seem healthy enough. I was introduced to a new word as well; stranding. Stranding is the word used to describe the swirl of tissue and fat still left in the body after the operation which makes it harder to see what’s going on. I imagine it to look like the whisps of egg-white in a frying pan when I amateurishly try to make poached eggs but that makes me feel a bit gippy so I soon move on.

The next wave of good news came from the good people at St Luke’s Hospice who I haven’t visited in 18 months but who were very keen to get a look at my leg. I was met with a series of questions to fill in the poor, unsuspecting nurse on my last 18 months of medical shenanigans and given a few stern looks to show disapproval that I hadn’t been wearing my compression stocking for most of the year – I reasoned that when you’re told you have months to live these things drop down your priority list fairly quickly. Nevertheless, all was forgiven when the lymphoedema nurse saw my leg and how healthy it is – largely due to months of keeping my feet up and then losing a lot of weight which relieves pressure on my leg and the skin that keeps everything inside said leg.

The main takeaway from that session was that my leg is now of such a diminished size that I can now choose my stocking from the ‘off the shelf’ catalogue which comes with a range of colour options including (and entirely limited to) grey, black, beige and navy. I’ve gone for racy navy because, well, grey seemed awful and I’ve tried black and beige already. Nevertheless, this was one slightly swollen legged step back towards normality which cancer has tried so hard to remove me from. Cancer puts you in the middle of a labyrinth sometimes so when you can feel yourself making the right turns, no matter how small, you have to take that as a win (you also have to imagine cancer watching on like a moustache twiddling villain shouting ‘curses!’ when you foil any small part of their evil plot).

So here I am. I go to work (at home), I eat food (slowly and in small portions), I pick surgical stockings from a catalogue, I’m looking forward to Christmas, and I’m even drinking a glass of wine as I write this. I’m both excited and enraged at what is going on America, I’m amazed that the Tories are still anything like in charge and I’m still as fearful as a man can be about a global pandemic as we head in to winter with folk still thinking it’s all a hoax. But that’s about as normal as normal gets in 2020, isn’t it? And if, for some freaky reason, a younger version of me has travelled forward in time through the internet and is reading this then please understand this, Roland: Normal is fine, normal is good, boring is amazing and uneventful is incredible. You should try it some time. Oh, and if you can avoid stubbing your toe on that step in 2009 that would be immense, thanks.

PS If you, dear reader, want to keep even closer tabs on my cancer fun, then there is now an Instagram page where you can get a more regular fix. Come join the fun at: https://www.instagram.com/bigtoecancer/