THE NEW NORMAL #61 – THE WIND AND THE PILLOWS

There has been a lot going on in the last few weeks and I’ll do my best to update you on it all in the coming paragraphs but before we get into the medical details I wanted to address a serious issue that is affecting every in our household at the moment; wind. Farts, guffs, pops, toots, silent-but-violents. Whatever you call it, when your digestive system has been severely truncated, and your diet has had to change in response to that change then it can introduce a fair bit additional wind into the system. Throw in a cocktail of (prescription) drugs, shake it all around and voila, you’ve got yourself a potent combination.

This has been the case for around a year now (and let’s face it, the warning signs were there before) which means the family has slipped into a pattern that includes a new system of warning signals, heavily ventilating the house (with added COVID avoiding benefits) and generally walking around with your t-shirt hooked up over the nose for extra protection. We have also invested in a number of wax melts, joss sticks and some of that V.I.Poo spray for excursions but nothing can take the edge of my toxic emissions. I even offered to accept some of those ‘filtered’ underpants as a birthday present but my long-suffering wife told me not to be silly as she stuffed wedges of cheese up her nostrils before strapping on a snorkel.

One of the sexier birthday presents that I did receive (and, for context, I got a poncho) was a knee cushion to help me sleep without waking up feeling like I have a serious WD40 deficiency. This looks like a giant foam tooth which straps to one leg and forms a squishy barrier between your knees which works a treat. The only remaining problem was that I kept waking up with a frozen shoulder that had a limited range of motion and I self-diagnosed this to be a consequence of no longer having the significant padding on my body that I used to have (did I mention I’ve lost loads of weight? Yeah, I’m pretty skinny now). As a result, I have taken to hugging a large pillow as I sleep so that my arms don’t get folded too flat across my chest which is what causes the frozen sensation.

Now, I hear you, “what’s this got to do with cancer, Roland? We only come here for the cancer chat”. Well, my point with these two stories is that whatever you’re dealing with as a part of cancer or cancer recovery it is likely to be unique to you and this shouldn’t be overlooked. Just because your symptoms don’t fit in with the ‘typical’ cancer patient doesn’t mean they aren’t real and making yourself comfortable and giving your body the best possible chance of recovery is absolutely vital (and this absolutely involves good quality sleep and not waking up feeling like a Robocop who’s been left out in the rain). It has taken me a long time (too long) to find the confidence in my own body to trust what it’s telling me but now that I have established that relationship I can afford to be all preachy to everyone else…..sorry, thought I was an Instagram influencer there for a second. Just listen to your body and if you don’t understand what it’s saying then ask a doctor to translate, OK?

The medical side of things has been quiet, quiet, quiet, hectic so I’ll skip the quiet stuff and let you know about the juicy details. I got to go in to the Oncology department and meet with my team face to face for the first time in a year which actually felt good albeit still an incredibly humbling place to visit. The chat was generally about how I’m feeling (achy and fatigued), how my lungs are (fine) and how my eyes are (fine). These last two questions come of the back of my most recent PET-CT scan as the imaging showed something symmetrical on my lungs (most likely to be sarcoidosis and non-cancerous) and something behind my eyes (possibly blurring caused by a subtle movement of my head during the scan). They were about to wave me off when they asked the usual “anything else you want to ask about?” and instead of the usual “nah, I’m cool” I actually uttered a “well, there’s just this thing on my toe”.

As regular readers will know, the big toe on my right foot is essentially ground-zero for all of my cancer woes so when I noticed a new black mark under the toe nail a few weeks ago my Spidey senses started tingling. As I’ve said before, because it’s me and it’s that toe, I was immediately referred to dermatology to be seen within two weeks. Weirdly, I’m not really that phased because I’ve had my entire toenail removed three times now and, completely illogically, the mark is on the ‘wrong’ side of my toenail compared to previous cancerous marks so it can’t be cancer again. Can it? [Inner sensible if slightly morose conscious – yes Roland, it can be cancer again and all the statistics point to a recurrence but let’s hang all our hopes on a positive mental attitude].

While I wait for an appointment with Dermatology, I got back on the Immunotherapy train after a glorious eight-week break where my energy levels started to rise and the aching subsided marginally. Back on the familiar ward there was a sense of subdued freedom while people still wore masks and cleaned fastidiously but there was a little less tension in the shoulders of the nurses. There was, however, no less tension in the patients around me at different ends of their cancer journeys. One elderly gent was struggling with the mental impact of going from diagnosis to prognosis to treatment in a matter of weeks and when asked if he was doing OK he very honestly said, “not really. I get very low at night”. Another brave lady was collected by her son who impressed the nurses with his niceness but as soon as he jogged off to the pharmacy, the mother broke down completely. Not in pain or discomfort she told the concerned huddle of nurses, just exhausted with the sheer relentlessness of cancer treatment and the self-disappointment at having to have her son see her like this.

As for me, I just sit there and keep my head down. I’m young for a cancer treatment patient so I often felt guilty for being there in a weird kind of way but I also have a strong sense of self preservation. I listen to the radio on my phone, I watch endless short clips of films or TV shows (First Dates has become a weirdly addictive favourite) and I catch up on messages while I sit in the big, wipe-clean NHS La-Z-Boy. I want to be the guy chatting to everyone, making people laugh and helping them unburden themselves of their woes. I desperately want to be part of that camaraderie that I have seen time and time again around me but it’s just not me – it never has been and probably never will be. So, I do what I can for my sanity, for my wellbeing and for those near and dear to me. And I always, always eat some melon from M&S.

The appointment with Dermatology came around quicker than I had anticipated and I was able to see a doctor on Saturday lunch time in between stocking up for the Brexit shortages and popping in to see the in-laws for a slightly belated birthday gathering. I arranged this day knowingly, willingly, with mundane and normal things surrounding a moment which, six years ago, would have had me on edge for days and left a tightly wound bundle of nervous and, frankly, grumpy energy. Now I am used to these appointments, I know more of what to expect from the experience and it doesn’t take all my focus which is a blessing in a lot of ways but also a bit of a risk in the way the two miles from your home are the most dangerous when you’re driving because it’s all too familiar.

Fortunately, this time around, I was seen pretty quickly and the doctor confidently and swiftly dismissed the change of colour under my toe as nothing ‘sinister’, just a change in pigmentation under the skin which will grow out over time. This was, of course, a relief but as I walked out and applied yet another layer of sanitiser to my hands I couldn’t help but hear the word ‘sinister’ echoing through my head. It’s a frequently used word to describe something that might be cancerous and it’s such a good word to describe these lumps, bumps and marks that appear on you.

In our society, if cancer was a person, he or she or they would arrive at your party without being invited and when you woke up in the morning they would still be there, lying on your sofa and ordering crap on QVC using your credit card. They would decimate your bathroom, eat all your food and play loud music all night and no amount of begging, pleading or bargaining would get them to leave. In the worst-case scenario, you have to move out and leave them to continue their carnage but in better times you have the help of family, friends and drugs to either get rid of them or at the very least keep them locked in a cupboard under the stairs – you can always hear their breathing late at night.  

For now, then, all that’s left is keep getting the treatment, keep having the scans and keep crossing every digit I can that the treatment works and my body is in good enough shape to survive any attacks on my immune system. That hope, however, is balanced against a creeping sense of urgency about how I’m going to fit everything in between the end of a pandemic (whenever that will really happen for the immune supressed or the not naturally gung-ho) and the end of the line for me. I’ve been working under the notion for a while now that what is left of my life isn’t really for me but for the people around me, so I’ve been trying to focus on what positive influence I can have on the life of others while I’m still here to have that influence.

I’m not saying that I’m going to give all my worldly possessions to a cat home or anything (I mean, what would a bunch of cats do with a collection of semi-rare vinyl and over 100 smurfs?), but at the same time what is the point in me adding to either of those collections when I could be spending my time on other, more productive things and more positive things. If I can be a good father, a good husband, a good son, a good brother and a good friend then that’s enough for me now so that’s what I’ll be focusing on. That and inventing the ultimate fart diffusing underpants that are also sexy in a manly way – like Tena Men but for the back door instead of the front.

One thought on “THE NEW NORMAL #61 – THE WIND AND THE PILLOWS

  1. Glad the dermatology appointment came around thicker than anticipated for you. But. Talk about keeping reader in suspense. My lungs were about to burst by the time I got to ‘swiftly dismissed’ (nice alliteration). Phgaaaaaa. Clear. Good to hear.

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