THE NEW NORMAL #60 – SCANS, SPACE HOPPERS AND PARTY BAGS

This week was supposed to be a big week, medically speaking, with my annual lymphedema check-up at St Luke’s Hospice, two blood tests, my monthly round of immunotherapy treatment and a quick check in with my consultant just to make sure everything is going to plan. That was the plan and, by and large, that’s what happened but what I didn’t expect was the content of the call with my consultant which happened on the Monday.  

Firstly, it wasn’t the consultant; it was my skin cancer specialist nurse which, if you remember the unofficial rules correctly, means that things can’t be that bad because only the consultant or the registrar deliver the really bad news. Secondly, there were scan results to be discussed which is notable because it feels like the first time my scan results have come back on time to be discussed at the agreed time. It’s like when you walk into the post office and there’s no queue – it feels great, but it also makes you massively suspicious. Nevertheless, despite my insides being described yet again as a ‘mixed bag’ (I always assume the bag to contain a selection items including a spanner, kazoo, turnip, toy train and an individual tea bag – like a really shit kids party bag), the news was actually pretty good.

There is no sign of the nodule that had popped up in my pancreatic base, the marks on my anterior pelvis are regressing (so either they weren’t cancer or the treatment is working) and the marks in my lungs are proving to be quite symmetrical which is a) very un-cancer-like and b) quite sarcoid-like. The only downside at the moment is something behind my eyes which they’re a bit unsure about as it was a small defined mark on the first scan and now it is a larger, blurrier mark. However, the radiologists are semi-convinced that this is down to me moving me head slightly during the scan and thus creating the blur in the imaging. So let this be a lesson for all of you; when they tell you to hold still for 40 minutes then hold still (or shake your head like a stroppy toddler if you want to mess with the radiologists but I am in no way advocating this).

Once off the phone, I had to relay this news to my wife and we hugged and we were happy. But the thing is we’ve been in this game too long now and that means you react differently. There was no popping of champagne corks, no impulsive decisions were made, and no great celebration was had (we’d already had a pasty for lunch so we didn’t want to over do it). Like a football manager in a post-match interview, we are very much ‘not getting carried away’, ‘taking each match as it comes’, and most importantly ‘sure we’ll enjoy this win and have a day off but then it’s back on the training ground to prepare for the next match’.

The training in this context is that I am now allowed to think a little proactively about my future. There will still be some treatment to make sure we don’t ‘slow down before the finish line’ (I’m all about the sporting analogies today, aren’t I?). I’ve been invited in for an actual, face-to-face meeting with my consultant so that he can assess my physical state and then I’ll be referred to a physiotherapist to help find exercises I can do build back some muscle to fill in the gaps between my skin and my bones. I feel slightly like a prisoner who has been told that he can be released in a few months as long as I don’t step out of line, but the world out there has changed so I need to be rehabilitated before they open up the big gates.

The next day I trotted off for what I knew would be my last visit to St Luke’s Hospice in Turnchapel, not because of any medical confidence but because the Lymphedema clinic is moving to Southway in Plymouth to free up more space in the Hospice for palliative care which tells its own tragic story. Surrounded by packed boxes and rolled up wall charts, I had a brief version of my usual check over and was told that my leg was in really good shape and that I shouldn’t really expect it to get any better than it is. This might sound defeatist but this basically means that although there is still some swelling and excess lymphatic fluid, only a trained eye would spot it and with careful management this won’t limit me too much (still no saunas though). I was also told that I have good ‘capillary refill’ which essentially means my toes go pink again quickly after they’ve been pressed a bit but is also going at the top of my Tinder profile if I ever become single again.

Going forwards, I will now just be called by St Luke’s a couple of times a year to find out how I am and I will only need to go to their new premises if my condition deteriorates. This is, obviously, good news but it does leave me feeling a little wobbly as my regular leg check ups have been part of the scaffolding around me during the last five years (physically and mentally) so as each buttress or metal pole is removed you have to check your balance to make sure you can still stand up without help.

Once at home, back in our safe little corner of Cornwall, hidden from the outside world, I again regaled my wife with each element of the assessment. We have good news, correction, we have two pieces of good news in as many days and given the last few years that’s very much welcome but we can’t help but feel a little flat and ever so slightly suspicious. It’s as though we expect Jeremy Beadle to jump out from the kitchen cupboards with a lecherous smile shouting “Gotcha! You are actually entirely made of cancer and you’ve got thirty seconds to live. We’ll be back after these messages from our sponsors!!!”

One of the reasons for this mistrust in the science or our good fortune is that I have become part of an online community of over-sharers on Instagram who are all telling their own stories of inspiration, hope and courage in the face of cancer. There are so many inspiring people out there and they share really insightful things that help me to look at things differently or more positively. However, for every ten messages of inspiration that I see, there’s one message from a partner or family member telling the community how their loved one has taken a turn for the worse or passed away suddenly. This fragility means you can’t take your eye off the ball for a second and you can never really, fully relax in to ‘normal’ which is tiring, to say the least.

I want to end on a positive though because this is a positive entry and I don’t want to sully that energy. Today, for the first time in a long time, I thought freely about the future. Sat on a folding chair watching my son compete in the space-hopper relay (heads up Olympic committee, it’s compelling stuff) as part of his school sports day, I scanned across all the little faces cheering their classmates on. I imagined all my son’s friends growing up to be teenagers, to go off around the world to be whatever they want to be and I could picture myself witnessing it all (as a human, not as a ghost – just to be clear). Cancer can take that away though and it will, given half a chance, so I’m maintaining a cat-like alertness at all times. Between naps.

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