THE NEW NORMAL #41 – DARKEST BEFORE THE DAWN?

I wasn’t going to write this blog entry because I didn’t feel like I had anything to say but it’s been a weird few days and I’ve found myself in a bit of a funk so I’ve decided to return to the original reason I started this blog which – to help me process my thoughts, feelings and fears. So, consider yourself fair warned and nobody will judge you for closing this one now and moving along.

There have been a few ‘happenings’ in my medical world starting with an investigation of my pesky big toe that appeared to have melanoma reoccurring under the toenail as has happened before. We were operating under the impression that once a quick assessment was completed, the consultant would then lift my toenail off (with a local anaesthetic, nothing brutal), scrape out the melanoma and send me on my way with a bloody toe and one less instance of cancer. What actually happened was the consultant (fully masked up) and another consultant (also fully masked up) looked at my toe through their special magnifying glass torch thingymajig (official name) and decided that this was, in fact, not melanoma. I know, yet more twists.

It seems the dark colour isn’t a change in pigmentation but rather the kind of blood staining or bruising you’d get from dropping something on your foot or, given that I’m taking blood thinners every day, “walking down a steep hill in tight shoes”. Now, I’ve quoted that last bit because of the ease with which that example tripped off the consultants tongue as though there are a flood of people presenting at Dermatology every day with blood soaked toes complaining that “I just wanted to run down the hill in these winkle-pickers and now look at the state of me, I can hardly walk”. Still, any proclamation of not-cancer is a good proclamation in my book so I skipped out of the hospital (via a liberal dousing in hand sanitiser, of course) and back to my doting wife and child who were waiting in the family van for me. So, no operation yet but they’re still going to do it on 22nd May, take a biopsy and check it out because, as the consultant said, “it’s you and it’s that toe”.

The other medical-moment of note was receiving a letter from the good doctor at Guy’s and St Thomas’ outlining our conversation and basically saying that she agrees with the treatment I’ve received so far and a few recommendations for moving forwards. These letters are pretty standard and usually get a skim read and go straight in to the folder of all my medical correspondence (fun fact: this is a Tigger folder that I half-inched from my wife which she, in turn, stole from the 90s). The significant thing about this letter was another blasé statement towards the end which essentially said that if all the options prove fruitless then she would agree with the suggestion for “palliative radiotherapy”. I kind of knew this was a likely eventual outcome but seeing it written down and with that awful word ‘palliative’ included really threw me for a loop. I’ve been to St Luke’s Hospice for my lymphodema treatment enough times to know that palliative care basically means a slightly less manic version of being in hospital with better catering and better views. The thought of being somewhere like that for palliative care and having, at best, to say goodbye to my family once a day really freaks me out so I try to avoid that particular avenue of thought.

Talking of family, I’ve been spending a lot of time with the wife and kids recently because, well, coronavirus. I’ve hit both extremes of a range that starts at ‘this is great, family time is just what I need right now’ and runs all the way to ‘oh my God, I miss that hour to myself I used to get during my morning commute’. I feel guilty about wanting time on my own but I’m naturally a fairly solitary creature so sometimes I have to find legitimate reasons to head off into the garden or go for suspiciously long toilet trips. My little boy has managed to break my heart with his little utterances (“Daddy, when I’m older and I move out, I think I’m still going to keep coming around for morning cuddles. In fact, I might just move next door and then we never have to be apart”) as well as generally leaving me speechless (“Daddy, if you were the Flash and you had a pick axe, you could get work done so quickly”) and also making me laugh until I cried with conversations with our next door neighbour through the hedge that separates our properties; “Naomi! Naomi! Look down at your bush, there’s something sticking out of it” (I should point out at this stage that he was waving a long stick through the hedge (or bush) to get her attention).

The hardest thing to handle, however, is dealing with all the cancer stuff and particularly all the ‘months to live’ stuff during the continued Coronavirus uncertainty. It’s been 7 weeks since I was told I should not stray out of my house, only sitting by an open window if I was feeling particularly adventurous – sure I’ve broken that rule a little but not without consequences. A couple of walks on the beach with my family of shielding chaperones have been fine but I have developed a new symptom of prickly skin brought on by anxiety when anyone comes a little too close. A solo trip to the village shop recently was aborted when somebody else dared to join the queue behind me and I genuinely freaked out.

My fear of getting sick now means that when I ate a little too much Chinese takeaway a week ago my brain immediately decided that rather then being ‘over full’ I was actually about to explode, Mr Creosote style and that would be the way my story would end – with noodles dripping off the walls and prawn crackers liberally spattered across the Welsh dresser. It’s a battle of wills every day to convince myself that any twinges, aches, pains or unexpected tiredness are not the first signs of the beginning of the end and I won’t be sucking porridge through a straw by the end of the week. The difficulty is, as an out of shape and overweight man approaching 40 like everyone over 18 once the pubs reopen, there are a lot of aches, pains and twinges and the unexpected tiredness just mounts up. As a perfect example, I spent a good 30 seconds this morning worrying that I’d developed a cluster of new brown moles on my ankle before I remembered that my little lad had been eating Coco Pops for breakfast and was a little sloppy with the chocolate milk when clearing up his bowl. Bloody kids.

On top of that, it has been an awful long time since I’ve seen or spent time with anyone outside my house and I really, really miss a lot of folk. I miss my mates, I miss my family, I miss my colleagues, I even miss those people who you only see or know in passing – the guy who scans my tag on the ferry every morning, the woman who cuts my hair, even the people who live in the flats opposite my office and who I watch in idle moments as they spend most of their time lounging about on a balcony next to a canoe. I am one of millions who feel like this right now and it sucks for all of us with no end in sight and no deadline to work towards (that part is really killing me – pun intended) but there is some hope for all of us. The devil on my shoulder, however, keeps telling me that if we don’t get a shift on and end this lockdown then I might not get the chance to see all those people again – let alone hug them, I am a hugger (not with the hairdresser or the balcony folk – the ferry man gets a Christmas hug).

It makes me beyond sad, it makes me depressed, it makes me angry like you wouldn’t believe and it makes me spiral off down the kind of warped imagined futures where the next time my little boy will see his grandparents is at my cremation or that I will have to leave my home for hospice care before I can leave it to go to the pub with my friends. Don’t get me wrong, I’m not wallowing. These thoughts leave my head as fast as they enter it but they come fast and often like flies buzzing around my head which, in this analogy, is played by a bowl of overripe fruit on a particularly hot day. Nevertheless, if I don’t swat a few thought flies every now and again by writing down their descriptions then they just keep coming back and fruit starts to rot.

Still, my wife has repainted the dining room and I’ve planted some things in some questionable soil in the garden so that’s progress and I’ve entered a competition for writing a children’s story so that’s something new on the immediate horizon. Even more than that, I’m lucky that my family and friends around me are the kind of good, sensible people who aren’t champing at the bit to go out and play three-legged volleyball in the middle of Primark during the sales so I feel well shielded and when it’s safe we will party like t’were 2019 – although I’m volunteering to be the designated driver as I’m still very much off the booze.  

****STOP PRESS***STOP PRESS***STOP PRESS****

The above was supposed to be the end of this particular entry but then I had an email on a Sunday evening and two phone calls on a Monday morning that turned my frown at least 90 degrees which is worth noting. Firstly, I was notified that the Cornwall Live website had marked me down in their annual cool list as the 27th coolest person in Cornwall due to my writing about music and this blog that you’re reading now. This is the weirdest and only accolade my writing has ever had but I’ll take it because it shows my son that you can get acclaim without being muscular, over sexualised or fame hungry so he’s happy that his dad is officially ‘cool’ even if he doesn’t completely understand why or agree.

The first phone call came from one of the diabetic nurses doing their first regular check-up of the year and the good news on this front is that I appear to managing this condition well so can just carry on as I am. The conversation is of note, however, because it revealed something that I had previously not been told about my last scan which was that the large lymph node nearest my tumour had shrunk following the first four courses of treatment. This, along with the fact that a lot of my side-effects are often associated with immunotherapy treatment actually working, means that there is just the faintest glimmer of hope that the immunotherapy might not be a complete waste of time. Glimmer #1.

Glimmer #2 came via the next phone call which was not a scheduled one but certainly a welcome one. The doctor in London who has been investigating options on my behalf was able to discuss my case with a colleague at King’s College hospital who just happens to be a dab hand at pancreatic surgery. This surgeon has come to the conclusion that it may well be possible to operate and remove the entire tumour, thus making me a whole lot better off than I currently am. The drawback is that the pancreas would have to come with it which would leave me diabetic forever (waaaay ahead of you) but also needing to ingest a capsule with every meal to mimic the enzyme normally produced by the pancreas to break down food. The other downside is that this is pretty major surgery which carries it’s own risks but, if the choice is a bit of slicing and dicing plus a pill three times a day or just waiting to get more sick and then die, then I know which prize I’m going to opt for.

For now, then, I have to make a foray into London town to meet the surgeon, have a scan and make sure I fully understand all the potential risks. Then, all being well with treatment and the toe chop op, I will head back to London for major surgery and a few nights in a hospital miles away from home during a global pandemic. Still, I’m officially cooler than Tori Amos and all but 26 other Cornish residents so London and this pandemic won’t know what’s hit it by the time I saunter out of there minus one pancreas with a whole load of staples in my belly. Chicks dig scars, after all.

One thought on “THE NEW NORMAL #41 – DARKEST BEFORE THE DAWN?

  1. Hi, writing helps me too in many ways, my greatest regret is that I can’t write letters to nobody anymore🥴sounds odd isn’t it?
    Yes, I really miss that, the excitement of seeing the most waited letter falling on the floor, hearing postman’s steps rushing away.
    I thought to write letters to strangers, funny😂, but it’s about the answer and communication for me.
    So, I thought a lot if to put this comment or not, I bet you get a lot of them and as you said, you miss time with yourself not others opinions🤣🤗❤️
    I take my chance and speak my mind out of a really kind heart that I have❤️
    Recently I felt the need of change and enlarge my horizons, so I’ve done a few courses, different from what I was used to do or learn, and on this path of changing for me I encountered the work of an amazing man, which you might want to look upon.
    He is dr. Joe Dispenza.
    Because this is not a letter😂, just a warm comment, I don’t expect a response, so, with all my heart and positive energy I hug your beautiful and great spirit!
    You’re doing good being the 27th coolest Cornwall blogger! Amen for that!
    Love
    Anca

    Like

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