The Unspoken Word

Inevitably a cancer diagnosis is going to frighten the hell out of even the strongest of us. It is almost certain to trigger the big questions of mortality in anyone. Questions that in normal life we put off or never get round to…. Am I going to die?

Well the bald and simple truth is yes, of course you’re going to die, but you were always going to die anyway. The question suddenly becomes mainly one of quantity and quality and with some people, there’s suddenly a spiritual angle; is there a God, an afterlife, will I come back as a lion or a cockroach?

The illusion before D-day (Diagnosis day) was that you were either predestined to to enjoy a happy life until your distant dotage, (at which point you wouldn’t give a damn anyway), or, depending how youthful you might be, you were totally immortal! And that illusion is suddenly brought into sharp focus and its fallibility exposed. How one reacts when given the ‘news’ is what both separates and unites us as terminal patients. How many times has this clichéed scenario played out on our screens? “How long have I got Doc?” murmurs the ashen patient, as the physician, eyes downcast, utters the sentence of the court…… I suspect for many of us that’s precisely how it feels; you the innocent victim found guilty of a crime you knew nothing about, and the rest of your life is going to be painful, dreadful and terminating in a lingering death.

There is no right or wrong way to react to this horrendous news. My own initial reaction was numbness leading to a oddly comforting disbelief. This merciful state altered some days later, after my first meeting with my consultant, whose obvious expertise and undeniable humanity lifted the curtain on this dream-like state, to be replaced it with a sort of low key defiance and a slightly directionless determination to resist in some way. Oddly, although I am religious to the point of being a rather inept Catholic, I didn’t immediately turn to prayer. Not that I felt that God had failed me in some way, but rather that I didn’t need to; I had a calmness and composure which came unbidden, and has remained through many an excitement and adventure ever since. But the awful truth was I was then at stage 4B with terminal Mantle Cell Lymphoma, It was March 2010, I was 63 and my doctor, in response to the inescapable question above, didn’t think I’d see my 70th birthday. I also had the impression he was being optimistic. Shortly after this, and before any treatment started, the cancer demonstrated just what a bastard it could be. I was suddenly very ill with high fever, soaking sweats, vomiting, abdominal pain, diarrhoea and an abject tiredness unlike anything I’d ever experienced. MCL is infamous for its lack of specific symptoms until the later stages, and typically, I’d had no recognised symptoms for the past four or five years of harbouring this disease.

What happened next was, to me, encouraging. My treatment plan was outlined involving two stages of chemotherapy, leading hopefully, if I survived, to a Stem Cell Transplant. However, at age 63 I was nearly a decade beyond the recommended age for this rigorous programme. My encouragement grew from a vague inner confidence I seemed to have developed – I wasn’t scared! But by far the biggest encouragement came from the team of nurses and doctors at The Christie Hospital. I don’t know why or how, but where fear might have lurked, I found a sort of fascination with what was happening within me and to me.

Don’t get me wrong; It was pretty awful. I’m a bloke, right? I don’t do pain, I don’t do needles, blood, or drips, or peeing in a papiermaché bottle, or worse(!). I get bored very easily, hospital food, (at least back then) was truly execrable. WiFi coverage was (then) patchy, unreliable and weak. And then, irritatingly, to my designer/engineer background, there was this ridiculous dangly arm thing over every single hospital bed, that purported to be both phone and TV, fulfilling neither role in any tangible way. It banged your head if you sat up suddenly, and should you attempt to interact with it via its pathetic blurry screen, it tried to charge you ten quid a week for the privilege! I’d love to have a chat with the cretin who rubber-stamped this design travesty, they simply don’t work and I’ve never seen anyone ever use one. Indeed, last time I was in the assessment ward many had been removed – Hurrah for common sense – but at what cost to the NHS?

Sorry, I digress, I keep “going off on one” as my family put it. I blame the steroids myself, as I’m a naturally modest, self-effacing sort of chap, preferring to keep my PC, non-judgemental opinions to myself. Where was I? Oh yes, fear being inexplicably replaced by fascination. Yes it was weird. Because I’d been so very ill, my chemo plan was started urgently, within 10 days, and 72 hours later the worst of the MCL symptoms had abated, replaced with fairly mild, short-term, but common chemo side-effects such as nausea, some hair loss and tiredness. Showering with clumps of one’s luxurious ‘barnet’ blocking he plug-hole was admittedly disturbing. But I was hugely interested in the various procedures I was being subjected to, and the staff were more than willing to talk through what was going on. But there were some really unpleasant procedures too. Like the bone marrow biopsy. That was my personal bête-noire! Under local anaesthetic a bone marrow sample is obtained from inside one’s pelvis, using a needle that appears to be the size of a bloody drainpipe! The only trouble was that the local anaesthetic doesn’t work on the bone itself which, ‘aledgedly’ has no nervous system? Let me tell you, it damn well does! It hurts like hell. I’ve had half-a-dozen of these procedures. Latterly they’ve mercifully added gas-and-air as an extra anaesthetic, which now makes the whole thing quite tolerable. A few deep breaths and you’re ‘away with the fairies’ during the worst bit – much, much better.

There I go again waffling on and losing the plot. The thing is, having written all the above, I feel very, very lucky! Lucky that in spite of acquiring this awful disease, I have a wife who loves me and nurses and cares for me every single day, even when I’m grumpy, unreasonable, rude, selfish and ‘‘off-on-one’. My biggest regret is what this is doing to Jane, the 24/7 carer. She’s far more anxious than I and gets little of the attention she diserves. I live in a beautiful area in a very nice house with my children and grandchildren close by; who don’t treat me like an invalid (hate that!) but are as supportive as they need to be. I have a ‘retinue’ of good friends who call me ‘Sicknote’ and keep me active and amused (‘abused’), always ready with a jolly quip or whatever we might need. But always creating normality and fun without that ‘look’, you know that Aaaaaoooohh look. I’m lucky to be treated at one of the finest, most innovative cancer hospitals in the world, by a team of doctors and nurses, many of whom have become personal friends. Lucky to be British and be the recipient of unstinting care by our fabulous National Health Service. I have no idea how much my treatment has cost, but I wouldn’t be surprised if it extended to six or seven figures of good British pounds – All at no cost to me, outstanding.

And then there’s me. Well you all knew it was all about me all along, didn’t you? What I was hoping to do with this Topic was to explore my deeper feelings in he hope of perhaps helping other new cancer patients come to terms with their situation. I guess the best advice or insight I can give is, Don’t overthink it. Don’t dwell in the cancer bubble. Get the best care you can and trust your medical team. Learn the meaning of Endurance, it’s not just a name on a famous ship, it means a lot and you’ll need some. Always look for the funny side of your dilemma, there’s always something hilariously amusing about cancer; true it’s often black humour, but funny and life affirming none-the-less, so enjoy!

Finally, spend a little time getting into your own head. There’s some good stuff in there, amid the old tea chests and redundant luggage, that ancient dinner service, sad discarded toys and old school reports and childhood daubings. Blow aside the fluff and the dust, part the cobwebs, and there, glinting dully in the dust, you’ll find a diamond, maybe two? But you’ve got look carefully, be quiet and very, very still……

6 thoughts on “The Unspoken Word

  1. A beautiful, heart warming text John, and a very thought provoking read. I feel priviledged to have received this essay from a gorgeous guy who I have known all my life.
    Still saying my prayers …..occasionally!!!
    Judi x

  2. Love you Sicknote! You are such an inspiration to us all. A total bully mind you, at Quiz Night, when on steroids and insisting you have the correct answer for a question and you are wrong!
    All the family send their love to you. Xxxx

  3. Hello John
    Should I say I look forward to your “Topic of Cancer” e-mails, I am of course sad you have the blasted disease but take great heart from your upbeat look on it all. I laugh at some of it and can hear you voicing your opinion, funny isn’t it you can hear another persons voice in your own head?
    Any road up, I am sooooooooooooo glad the e-mails keep a coming, as will everyone who knows you.
    Take care & love to both you & to Jane 🙂

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