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/ 

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