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……

Happy New Year 2019

Combs Moss from home

Hello Everyone! Happy New Year and welcome to my smart new website. This website was a birthday present from my son, Andrew, who is a senior web developer for a major online retail group. It’s terribly cool and I’m going to have to up-my-game to do it justice. But it‘s so clever that hopefully it will give you a reason to read my story and maybe get something out of it?

I’m not going to ramble on about my cancer, ‘cos even I find it a bit tedious. Unless you’re actually ‘dodging bullets’ it’s not too exciting (that might be the wrong word?), although I’m not looking for combat, live ammunition in my case, is most definitely on the cards! Suffice it to say that I’m two chemo sessions into my six/eight month programme and in a marginally upward trajectory with several surprise twists and complications. Still very tired, no energy and breathless AND a pain in the a*** to my long suffering but ever-loving wife Jane, who smoothes my way like the finest steam iron.

But being as described above, virtually housebound, I find I have a lot of thinking time and there are few stimuli to be found on TV, Netflix or Amazon Prime, unless one wishes to hone one’s skills as a hitman, drug dealer or money launderer, although my crystal meth laboratory is coming along nicely! (If that last bit doesn’t compute, you’ve got to get on Netflix). I’m afraid the fantasy stuff, like Game of Thrones, just leaves me cold with CGI overload and the certain knowledge that dragons really don’t exist. Also, the colossal weight of American popular ‘culture’ thrust upon us by US media has made me understand just how that orange gibbon, Donald Trump actually gained the presidency.

If you’ve got nothing better to do I strongly suggest you read a new book; ‘The Fifth Risk’ by Michael Lewis. Lewis is an American journalist whose credits include ‘The Big Short’, (about the scandal behind the global financial crash). I apologise in advance for Lewis’s awful US grammar and lazy, skimpy style of journalese, it irks me, but I have to forgive him because of the astounding avalanche of facts and evidence he assembles on the Trump administration,I use the word in its loosest defintion. This is not a hatchet-job on the quiffy idiot, he does that so well himself. This book assembles a huge and diverse list of unassailable facts on his corruption, cynicism, arrogance and pomposity, leaving the most powerful country in the world, the USA, unprepared and vulnerable and frankly blind-sided by the surprising fact that Trump Won! No one was more surprised to be president than Trump himself. If you want to see an example of someone so utterly out of his depth in a role he never imagined he would occupy, just re-run the last two years news items of White House blunders, sackings, conflicts, tantrums, stupidity and vulgarity. Watch the rictus smiles of his Republican allies, the grey embarrassment of seasoned Washington civil servants and gnarled media journalists. This is the NON-fake news that somehow the world has myopticaly tolerated and what America has become under Trump’s leadership and “administration”. Read it and weep. No, really… Weep! This affects us all because Trump tacitly represents us, the West. And I can’t imagine anything more dangerous.

Are you good at confrontation? No, I’m not thinking of going toe-to-toe with some huge lout in the street, I’m talking about confronting stuff that’s important, even vital, to you? We all get choices in life and we also get placed in situations we can’t control. I’ve always been a ‘fix it’ sort of bloke. I can’t abide, flat tyres, dud lamps, mucky windows or listless people who just can’t progress because a decision needs to be reached. – OMG! What if I get it wrong…..? I’m constantly baffled by the vital life choices some people make. Choice of life partner? Choice of career? Health Choices? “If something’s worth doing it’s worth doing well”, has always been an aspiration of mine, if not always carried through with the enthusiasm with which it was commenced! Weigh up the facts, discuss the risks and rewards, establish a clear objective, remove rose-tinted spectacles, and if the needle’s in the 66%+ area bloody well go for it. Oh, and don’t give up when the going gets tough, because the going always gets tough and there will also be that totally impossible situation that no one even considered. And of course there’s that other guy who lets you down, or acts like a prat, or displays criminal tendencies, or turns out to possess none of the skills his CV assured you he had in copious levels. Such is the path of endeavour and indeed life itself. For me, when something needs fixing, painful and scary though it may sometimes be, just do it, don’t whimp out, don’t say maybe later, bite the bullet, grit your teeth and sort it – You’ll be glad you did.

Here endeth today’s riveting text from ‘Old Sicknote’, as I’m affectionately known at my local tavern. Sage words I hear you mutter, but please be assured that, if I’m spared, there will be more such pearls beaming their light into the dim recesses of your collective existences, for which I shall make no charge whatsoever. Other that is, than to waft a foppish finger at the ‘Donate to the Christie’ button at the top right of this page. Should a surplus groat be found in a forgotten trousers’ turn-up, down the back of the sofa, or tarnished and forlorn under that pile of white fivers you stashed in that biscuit tin in the garage, what can I say? Place it carefully where it will do some good keep irritating buggers like me alive. Go on! You know it makes sense.

Lots of Love ❤️

This is an outing of the IF Club to Ladybower in the Peak District using our bikes. A motley crew but mine own, left to right - Caroline, Sue W., Roger, Tim et moi. I’m forcefully advised NOT to say what the club synonym IF stands for. It’s just not very nice OK?
This is an outing of the IF Club to Ladybower in the Peak District using our bikes. A motley crew but mine own, left to right – Caroline, Sue W., Roger, Tim et moi. I’m forcefully advised NOT to say what the club synonym IF stands for. It’s just not very nice OK?

#8 – Update Winter 2018

John at Penrhyn Point – Fairbourne

It’s been nearly two years since you last heard one of my TOC bulletins from early 2016, when I’d just survived a nasty bout of pneumonia, from which I was lucky to recover! That turned out to be a random infection I picked-up because my immune system was weakened from earlier cancer and subsequent chemo, and not directly attributable to my cancer (Mantle Cell Lymphoma – MCL).

I didn’t think you’d want me waffling-on without much of a story to tell, so radio-silence has been maintained, and Jane and I been happily getting on with our pretty active and enjoyable lives ever since, subject obviously to regular monitoring of the MCL. In December 2017 I hit my 70th and I’m now I’m only days away from my 71st – two events I was never to expecting to see when diagnosed back in 2010.

For the last four years the therapy I’ve been receiving has been, in lay-man’s terms, a super-drug called Ibrutinib which I’ve simply taken as two pills every day. There have been virtually no side-effects and this has been superb, almost the perfect solution. However, Ibrutinib was not a cure as MCL is incurable and terminal, and although I was originally advised to expect up to two years remission from the drug, I have remarkably had almost exactly four years, and become a bit of a case study for this effectiveness of this therapy.

Well, of course all good things come to an end and Ibrutinib has finally declined in effectiveness over recent months to the point where my consultants have decided to withdraw the prescription and plan the next stages in my treatment, which will be newer versions of conventional intravenous (IV) chemotherapy, albeit highly developed and now well-tolerated, with far fewer side-effects from when I was originally diagnosed in 2010.

How do I feel?

Well obviously disappointed that remission has ended yet again for a third time, but consistently stunned by the tenacity of the Lymphoma team at the Christie Hospital in constantly engaging with my disease so caringly and effectively. As our US cousins tend to say…. “They seem to exude the confidence that nothing’s going to get past them – they are quite brilliant!

The initial purpose of writing to you in this way was to keep our wider family and many friends, informed, and to reduce the flow of lovely, concerned, but ultimately taxing enquiries to my wife Jane, who’se had enough to put up with being married to me for 46 years, and now having the poorly version being endlessly enquired after. So I cobbled together an irregular email bulletin which I could send out from wherever I happened to be – home, hospital, chemo suite, toilet, etc.

From the couple of dozen original recipients who apparently found my updates interesting, I received a steady flow of requests from other friends, villagers, acquaintances, parishioners, drinking buddies, ne’er-do-wells, hobbledehoys and lovely people of whom I’d never heard, to be included on my mailing list. After a few months the mailing list exceeded 100 and I was getting dozens of messages of support, encouragement, love, humour and abuse in reply. This writing was a great way for me to fill long tedious days of hospitalisation, treatment and recovery. The emails culminated in early 2016 when, after many ‘alarums and excursions’ I was in what they call high quality remission. But with the knowledge that the cancer would, at some point, return. which unfortunately, it now has.

So we’re back to square one, nearly nine years later, with a cancer which has a 10 year survival prognosis of less than 5%. My temperature is spiking, I’m get drenching sweats every night and I’m very, very tired and short on energy; what they call profound tiredness. But worst of all very breathless, which limits my range quite a bit. All this has kicked in within 72 hours of stopping the Ibrutinib 2½ weeks ago. That’s the bad news!

The good news is I’m starting chemotherapy on Tuesday, and if previous experience can be relied on, I’m hoping to quickly recover from that list of nasty symptoms mentioned above and get back to normal, albeit after a bit of the usual chemo side-effects like, the tiredness, nausea, possible hair loss and a compromised sense of humour. The lovely people at the Christie have boosted me in the interim with large doses of steroids, which has given me the appetites of a 25-year-old Lithuanian Roof Tiler, and I can eat and enjoy huge meals of red meat and copious plates of carbs – Yum! The down-side of steroids are insomnia, mood swings tending toward aggression and argument and certain bowel issues which need not detain us here?

At this point I’ll sign off, secure in the knowledge that you’ll be wishing me well and those of a a more spiritual inclination might murmur a heartfelt prayer or two too. I’ll keep you informed of progress and of course the more amusing angles involved in the treatment of cancer; of which there are many!

Those of you who are reading this ‘ont inter-web at topicofcancer.net can thank my son, Andrew who has created this website as a special 71st birthday gift to me. I’m just getting my small (and shrinking) brain around the technicalities of how this all works. But I think he’s done a wonderful job so that me little tale is presented and produced very professionally and clearly. Thank you Andrew!

 

#7 – It’s still about me. But it was a damn close-run thing!

Wow…! That was emotional! I seem to have lost the best part of three weeks to critical illness, I’m drained of almost every lucid thought, been unable to communicate for days on end and finished up weak as a kitten and wondering what that was all about?

But first things first. The last you may have heard from me was from my Christmas email which outlined a happy 2015 of travel and good health for Jane and I, to continue, we hoped, into 2016. New Year came and went, but around the 12th Jan I began to feel vaguely unwell, tired, grumpy, and running an erratic temperature. Rather stupidly and against advice from both Jane and indeed standard practice for cancer patients, I managed to shrug off the truth for 48 hours too long, ending up being conveyed by speeding ambulance with sirens and blue lights, to the Christie hospital with pneumonia and near sepsis. After that things went a bit weird for me as I seem to have lost a great many days and been very naughty in giving Jane, children, family and friends several serious turns as I rambled deliriously (more deliriously than normal…) and apparently fought the medical staff and even been described as ‘combative’ as I veered from pneumonia to serious kidney issues to drug conflicts in the Christie Critical Care Unit (CCU) over many days as they tried get me back from infection and carry out a fantastic job of balancing my medical needs.

Cutting a long story very short ( because frankly I was away with the fairies for most of this time and have very little to contribute to the saga), but poor Jane and the family went through every thought and emotion and trial as my condition flipped from critical to serious and back again several times. Suffice it to say that I survived. I apparently sat up demanding fish and chips and gave everyone a huge surprise. My son Andrew claims he whispered to my unconscious form that he’d put my caravan on eBay and that had the desired effect!

I’m battered and very weak but I am very conscious that I’ve been the privileged recipient of the finest care in a world centre of excellence at the Christie with such a wonderful team whose tenacity and expertise defies description.

Last Friday 29th I was finally discharged from the Christie, not quite ‘out of the woods’ but having made an almost miraculous turnaround from only days before. Why? How? I have no idea but here I am back home having been on at least two occasions very close to death and even been given the Last Rites -I don’t suppose you get much closer to the edge than that?

Anyway, …I don’t suppose you can simply say ‘anyway’ after an experience like that, but none-the-less I’m making good progress and getting stronger by the day. Of course the big question is, is this something to do with my cancer or just a random infection I’ve been unlucky enough to have picked up? The smart money currently thinks not; but I had some tests back at the Christie on Monday 1st February which showed my blood chemistry was stabilising somewhat and I’m going back to discuss these n Friday when hopefully I’ll be put back on my highly successful super-drug and I can start rebuilding my life.

I’ll not ramble on too much longer as even typing this is still quite challenging. But in answer to the many many people who have wished and prayed and been concerned about me, I thought it only right to send out a catch-up bulletin for those that want to know. Thank you so much for your love and care. Strangely, one thing I can say with some certainty during my lost weeks is that I was ALWAYS aware of waves of love and care and goodwill permeating my delirium as I never felt in anyway fearful or alone throughout the whole experience.
More later as I progress…

#6 – It’s not just about me. Surely not !

!

So it’s April 16th and I’m sitting in my garden in 17 degree sunshine in the Peak District for heaven’s sake! Of course I’m wearing my long-sleeve cozzie, I don’t want to risk a chill do I? But, as they say round here, “It’s right luvly”. The lawn is a sea of celandines and the daffs are nowhere near over. But we have suffered a couple of invasions; the damn moles are digging tunnels, Tom, Dick and Harry, not to mention Fred, Percy and Rupert and depositing substantial earthworks on our hard-won wild lawn, wrested from the tundra over the past decade – might have to call “The Mole Man” if they don’t pack it in.

Also invading have been several sheep complete with lambs. As the valley is currently the home of three or four thousand of these iconic peakland beasts, it’s not surprising that a handful of them escape confinement to batter their way onto my hallowed turf. Nibbling my grass would’ve been OK, but these miscreants seem to have stored up a group bout of amoebic dysentery and befouled my greensward with remarkable generosity! Not only that; one day, while we were out, we returned to a scene of utter devastation. There was soil and compost scattered all over the drive and garden with overturned pots and planters and uprooted plants. The pattern of destruction was so geometric that we initially thought we’d been vandalised, but soon realised by the tell-tale wisps of Herdwick grey wool caught on the thorns of a ruined rose bush, that the culprits were ovine in nature. We deduced that a sheep (or sheep), having invaded our garden, had been nibbling Jane’s prized pansies planted around the rim of a large ceramic pot containing a large rose bush. It had then got its fleece snagged on the thorns and panicked, running all round the drive and garden dragging the rose and root ball, dispensing soil, compost and mashed rose to all quarters. It took an hour to clean up afterwards and the loss of a fine rose and a few dozen bedding plants makes it an expensive incident. Anyway, I’ve located several fine recipes for prime English hoggit and I’m oiling my old musket pending the next incursion. So I’ll soon be in competition with Hoo’s Herd – proper upland mutton this, none of that soft southern nancy stuff!

You’ll have deduced from the forgoing that health-wise I’m doing rather well. The wonder drug is, as billed – wonderful and I’m feeling fit and for an ageing dilettante, full of vim and vigour. Been out on my trusty E-bike quite a bit too. If it’s not raining I’ll nip down to town for supplies, weaving through the eight-wheeled stone tippers and errant 4x4s with aplomb. A good friend of mine, Jason, recently suggested we try a trip out on our bikes. He’d had a mountain bike for a while but hadn’t had much chance to use it, so we planned an excursion down the local Monsall trail. This was a blokes day out so Jason and I strapped our bikes to the back of the Land Rover and drove the six miles to the start of the trail where we set off on the 8+ miles to Hassop station and back. Neither of us was saddle-hardened after the long winter months so the excellent bistro at Hassop was a welcome relief, where Jason, with great restraint ordered a nice low-calorie salad. When the excellent salad arrived it was accompanied by a mega-mound of chips which, wracked with guilt though he was, he demolished in quick time – well, it would be rude not to wouldn’t it? I myself had no qualms in ordering an excellent Moroccan lamb-burger which was similarly bedecked with a raft of chips – this didn’t touch the sides either. Well, we’d been pedalling furiously all morning hadn’t we?

I managed to get Jason out of there pretty swiftly as he was eyeing and enormous slab of cheesecake and we returned to the trail to make a leisurely return to the car. Later, after 17 miles of cycling the shortcomings of Jason’s racing saddle seemed to have wrought severe issues to his nether regions. His gait when we got back to the car was a fine tribute to John Wayne. My gel-cushioned saddle was less winceful, but I did detect a severe loss of sensation in areas where sensation would, in a chap, normally be rather important. But whatever the war wounds we had a really great day and a lot of fun and can’t wait to do another trip soon.

All this energetic activity brings me adroitly to an important request dear readers. On May 10th the Great Manchester Run takes place, where not only Jessica Ennis and Haile Gebrselassie will be competing, but also my son-in-law, Richard Parker will be running to raise money for The Christie Hospital; the amazing organisation which has been responsible for keeping ‘Yours Truly’ alive, fit and irritatingly verbose for more than five years! Richard is as fit as a butcher’s dog (although vegetarian) and is running the 10km with a high degree of competitively (new word – good init?) as he hates a being beaten at ANYTHING! So Haile and Jess better check their wing mirrors for his looming form. Anyway, the point is we need a bit of your dosh! A special Just Giving website has been set up so you can sponsor Richard direct at https://www.justgiving.com/Richard-Parker27 with all proceeds going to The Christie. So could I ask you if you can, to please be generous?Donations start at only £5, we’re trying to raise over £1,500 by May 10th when Richard will do the run. We’re already at nearly £300 so many, many thanks if you can help. The Christie are doing amazing work, after all, look at me! ………Err right, moving swiftly on…

Anyway, the caravan is due on 7th May and this will prompt a flurry of news items that I’m sure you’ll all be fascinated to read. Our exploits as we roam the highways and byways of Britain will be epic and I can’t wait to tell you about the intricacies of hitch-locks and movers and of Elsans and awnings, or as Jane likes to put it – Faffing about!

That’ll have to do for now because I need to get this out in time for Richard’s charity run. Many thanks for your continuing messages and good wishes and of course spiced with the usual seasoning of abuse – most important. But meanwhile best wishes to you all.

#5 – It’s still about me… fortunately!

Happy New Year to one and all!

It’s been a couple of months since my last missive, so in answer to those many friends and family who have kindly enquired after my health via Christmas cards and messages, I thought an update was due.

I’m settling into retirement with some small difficulty. It’s remarkable how strong the work ethic is ingrained, even in me, I often feel quite guilty about not having to be somewhere and the concept of pleasing myself is taking me time with which to come to terms. However, I do seem to have been seconded to the fairly extensive child-care of our two grand-daughters, who, along with Jane, who has been doing this for years, I have become adept at picking up from school/bus/Rainbows/Guides etc: Homework: some of which is way beyond my dwindling intellect; Feeding: 11 year-old Charlotte now has a very sophisticated palate and makes challenging suggestions for the dinner menu, whereas 7 year-old Isla appears to be solar powered and lubricated with chocolate! In the run-up to Christmas poor Jenny and Richard have been so heavily committed with their thriving online retail business, they’re often not home before 9pm, so to have the kids ‘sorted’ most weekday evenings is a real help to them and this means we see a lot of our two gorgeous girls.

I’m still getting out on my E-bike quite frequently, weather permitting, and still enjoying the challenge even in a much colder and damper Peak District, which remains wild and wonderful whatever the weather. I’m even looking forward to a bit of snow. On Boxing Day we had about four inches of big ‘goose-down’ snowflakes which fell and promptly froze and it was a delight to go down to our village pub and sit by the roaring log fire seeing moonlight bathe the hills of our valley (see view from bedroom window above). But while I love proper seasons, I much prefer the spring and summer months when the peaks seem to come alive. I was out there this morning, on the tops; nothing too challenging as I kept to the road and paths, not venturing too far onto the green stuff as the Peak District can be a bit of a quagmire at this time of year, but it’s still magnificent. I watched a couple of ravens wheeling and soaring in the strong westerly wind; big birds with burnished gunmetal plumage as they launched themselves from the crags that are such a feature of our valley.

But back to the E-bike. You need to get swaddled up like a polar explorer when cycling in the cold. I fortunately have an old insulated Hi-Viz jacket I used for site visits when at work; this, together with some cheap salopette ski trousers, sorts out the problem. Top this off with a rather garish cycle helmet worn over a ‘beanie’ hat and some stout gauntlets and I’m ready for the open road. Looking rather like one of those squat LEGO cartoon characters instead of a Lycra-clad Tour de France racer, I really don’t care as I waddle round the supermarket collecting provisions, noisily swishing my ski pants (no, ‘swishing’ Karl). I must be quite a sight but on the road at least they can’t say they didn’t see me!

Our village was touched with sadness this Christmas however, as one of our good friends died very suddenly aged only 57, less than 40 days after being diagnosed with pancreatic cancer. Colin was a great local character, offering an acerbic Yorkshire front to the world. His dry, often incisive wit did not suffer fools gladly, but veiled a huge generosity of both spirit and his more tangible talents that he freely gave to all in need. He had a fine eye for the ridiculous and was a adept at pricking pomposity whenever it blustered within his range. He will be sorely missed by us all. Such injustice makes me hugely grateful for the skill and care I receive from our incredible NHS, which for all its problems still provides the best health service in the world. Sadly, Colin had one of those deadly, treacherous cancers which are so vicious that by the time it’s identified it’s already too late. His funeral was a fine tribute to a short but full life and our thoughts are with Caroline, his wife, to whom he was totally devoted and who has been amazing in the quiet composure of her grief.

Healthwise, I’m actually doing very well indeed; the new drug regime is working well; side effects are minimal although I am suffering some adolescent-like facial spots which is ruining my handsome visage and doing nothing for my ‘street-cred’! (I don’t think they say ‘street-cred’ any more, do they?) Some of my less savoury associates have also enquired whether the youthful spots might also indicate a similarly pubescent fecundity in ‘other’ areas, to which my response has been a haughty sniff and aversion of the gaze. (Note to self: I really must review my social circle).

I have though developed, you’ll all be riveted to know, a septic toe, one of the side effects of the super-drug I fear. Anyway, I took myself off to the foot farrier adjacent to our GP surgery and had the farrier (they actually like to be called podiatrists really) have a look at the offending pedal digit. Well, without so much as a by-your-leave or resorting to a twitch (equine term: Google it) he set to paring my hoof, or nails to be more accurate. Well that made me whinny a bit I can tell you, as the offside big ‘un was pretty sore! Still, it needed doing and he dressed the offending toe very nicely and advised that a small op would be necessary to sort it good and proper, so I’m back for this op next week. I can then resume my Tango lessons, as Ola’s getting bored waiting for me.

Well, that’ll have to do for now as the tendency to waffle is ever present. Thanks to all who reply and do have a great 2015 whatever you’re doing. I’m planning an active year full of new adventures of which more anon…

#4 – It’s about me yet again

Garden

You can’t believe how liberating it was to have my stent fitted back in August. I said so at the time, but the reality of gaining a new lease of life after all the debilitating side-effects of cancer, chemotherapy and angina was rather unexpected. Isn’t it amazing how just a little tweak of a bit of arterial tube could make such a difference to ones quality of life? I’m now doing all sorts of things that were previously off-limits; hill walking, cycling, gardening (left) and travelling, to name but a few, enjoying the freedom and power this simple procedure has brought me.

The danger is of course I now tend to do a bit too much, revelling in my new energy and strength, but sometimes resulting in me becoming OVERTIRED, and ‘possibly’ a bit cranky. It still takes quite a long time to recover from exertion but I’m constantly trying to gauge whether I’m much different from the average 66 year-old git. Many men of my apparent age either delight me by saying they’re only 55 (…and I’m well above par on that scale!), or shocking me alarmingly by quoting their age at 79 as they stride off to bag a couple of Munros before lunch! Still, you can’t have it all ways and I’m very grateful for the wonderful boost the stent has given me.

Juicy e-bike
Juicy Bike

Well, you’ll be pleased to know I haven’t been idle in the couple of month since my last ‘Topic’. Much has happened. There have been weddings, travelling and interesting new activities. Shortly after the stent I determined that more exercise was needed and encouraged by the medical team as well; I had a lot more energy but knew that taking up base jumping or fell running was probably stretching it a bit, so I looked into cycling as a serious option and came across E-bikes. These are basically ordinary bikes with variable power assistance from a battery. There are all sorts of options available, but after some research I decided that a folding bike that would fit easily into the back of the car would be the most useful.

So I bought a cracking little E-bike called a Juicy Compact and quite frankly I’ve never looked back. The problem with living in the Peak District is exactly the same as the beauty of living here – The Peaks. No matter which direction you choose, sooner or later you’ll come across a bloody great hill, which, however picturesque they may be, present a challenge to forward motion. The E-bike therefore offered a chance to tackle hills and get back in the saddle after the ravages of time and chemo.

Since acquiring the E-bike I’ve been cycling most of our fabulous local cycle trails and can quite happily handle a trip of 20 miles or so, seeing some of the most spectacular upland countryside in England from a new and much more intimate perspective. I’ve even ventured to the local shops in Chapel-en-le-Frith, about five miles away for small provisions, which fit neatly into the rear panniers. Cycling on busy roads takes a bit of getting used to, especially as a long-term motorist; cyclists can be unpredictable and occasionally rather bolshy! Not me of course, swathed in fluorescent yellow Hi-Viz and sporting bright, flashing LEDs fore and aft, I find it a new and quite invigorating activity and I’m enjoying it enormously. However, I suspect I’ll be a bit of a fair-weather-cyclist as I haven’t been out in the rain yet. I’ll give it a go as autumn sets in and see how I get on.

On the medical front, I’ve been hoping for some time be selected for a new American drug called Ibrutinib, which has had spectacularly successful results for my rare Mantle Cell Lymphoma in the USA. In the States it is now fully FDA approved, but in the UK it is still awaiting an NHS licence. The downside is that although amazingly successful it is also hugely expensive because of the rarity of patients with the specific condition it treats. Friday 24th October saw me at The Christie hospital where I signed up for this drug which is being funded for me by the American drug company and will continue to be so until it is adopted by the NHS. Ibrutinib is very different from normal chemotherapy, in that it targets the specific cancer cells and blocks them from dividing or multiplying. Consequently, although there can be side-effects, the drug is “well tolerated” and doesn’t cause the usual “collateral damage” that conventional chemotherapy can cause to healthy cells. The other huge plus is that it’s in pill form taken daily at home, rather than by intravenous drip in hospital. This saves an immense amount of my time and of course all the hospital staff and resources normal chemo entails. However, Ibrutinib is not a cure, although it is likely to achieve remission for some time, the cancer will return. Hopefully by then they’ll have developed some other new treatment. Anyway, so far, after 10 days things seem OK, although I’ve noticed I seem to be prone to bruising and cuts, especially on the face when shaving which take longer to heal. Looks like the beard’s due for another airing.

The other big news is, we’ve bought a caravan! Jane and I have taken three holidays in the last couple of years, where we’ve hired caravans and toured the Lake District, the West Country and the Cotswolds and we’ve really quite enjoyed the experience, although it has to be said, Jane’s not a big fan of the travelling, especially on narrow country lanes. But already owning the world’s best tow car, our Land Rover Discovery 4, which is a dream in which to tour, caravanning is a means-to-an-end: it simply gets us to places, cheaply, conveniently and comfortably where we can spend quality time together experiencing so much of this wonderful country of ours, and who knows, eventually across to Ireland and the possibly, in time the Continent.

Jane and I went to the big caravan show at the NEC a few weeks ago, already with a clear idea of the model we favoured, but with no intention of actually buying one. But the very first stand we walked into was actually the manufacturer of that model. So, just to hone my haggling skills I collared a salesman and asked for his best price on the model we wanted with several quite high cost options included . After some lengthy calculator tapping, consultation of lists and much pen sucking he came up with a price substantially under list! I was very surprised; I hadn’t even haggled, but knew from my research this was a damn good offer. The salesman’s problem though was geographical; he was in Hereford, three or four hours travel from our home in Derbyshire. I asked him to write down his offer and told him we’d go away and think about it. Jane and I then went to our local dealer’s stand, asking them to quote their best offer on an identical package. After even more tapping, rustling and sucking he asked if we’d already had an offer. I told him his competitors bid and showed the written confirmation. I can tell from 40 years of industrial negotiating when a seller is really on his back foot and this guy had both his feet out of court! However, he wasn’t going to lose the sale and playing his geographical advantage, he offered a close bid which added a few hundred for their locality to us, but still well over 16% under list including all the extras we wanted. As I said, we really hadn’t planned to buy today, so we left the dealer with an assurance that we would return with a firm answer that day and went to sit and discuss it over lunch.

We had ‘sort of ’ decided to buy a caravan when I retired fully, which I had in July this year, and here we were at the country’s biggest caravan show where the country’s top dealers were competing for the business of thousands of potential buyers; where better to get a cracking deal? So the die was cast and we went back to our local dealer and placed a deposit on our chosen caravan with all the trimmings. For those of you who might be interested, it’s a 2015 Bailey Unicorn Vigo with Reich automatic motor mover and you can see it here. We’re looking forward to spending some quality time travelling with our new home from home and we can’t wait to fit it out and get going when it arrives next spring.

You may wonder why we’re taking such an enormous and expensive step with my cancer prognosis being what it is. The answer to that question from my point of view is relatively simple – I simply do not acknowledge that a mere anomaly in my cells should dictate the course of my life. I will continue to live life to the full and enjoy new places, experiences and people whenever I can. Frankly, on a day-to-day basis I don’t actually think about my cancer at all; it doesn’t impinge on my consciousness; to allow it to do so would be to defer to its power; I keep the vital creed that I’m the most important thing in this struggle, deep in my subconscious and I’d recommend anyone in similar circumstances to adopt the same selffocus on positive progress, WHATEVER the prognosis may be. Sure, this is the power of positive thinking, but the mechanism by which one subconsciously steers one’s life is fundamental and I find it hugely liberating.

This may sound a selfish and of course it is. Jane has been wonderful in understanding what works for me and to a large extent, giving me free rein to indulge my idiosyncrasies, but she knows when I’ve bitten off more than I can chew and steers me on to a more sensible path although I’m probably a bit tetchy about altering my objectives.

Anyway, enough of this philosophy; let’s have a joke to round things off…

In the great days of the British Empire’s colonial past, a new commanding officer was sent to an African jungle outpost where he was to relieve the retiring colonel. After welcoming his replacement and showing the usual courtesies; gin and tonic, etc, the retiring colonel said, “You must meet my adjutant, Captain Smithers; he’s my absolute right-hand man; the real strength behind this office. His talent is simply boundless.”

Smithers was summoned and introduced to the new CO, who was alarmed to meet a one-eyed, stunted hunchback whose toothless head was cricked at an acute angle. He was bald apart from matted tufts here and there and his pockmarked skin bore several suppurating pustules. A less attractive specimen would be hard to imagine as he squatted toad-like before him. “Smithers, old man,” said the colonel, “tell your new CO about yourself.”

“Well, sir,” the apparition croaked, “I graduated with the sword of honour from Sandhurst, joined the Coldstream Guards and won the Military Cross and Bar after three sorties behind enemy lines. I’ve represented Great Britain in many equestrian events and won a Silver Medal for boxing in the middleweight division at the Olympics. At university, I researched the history of…..” Here the colonel interrupted, “Yes, yes, Smithers, never mind all that, the colonel can find all that in your records. Tell him about the day you told that witch doctor to f*** off.”

That’s All Folks! As ever, many thanks for the many replies and best wishes together with the usual abuse and hilarity; keep it coming it is so important to me.

#3 – It’s still about me…

Last Tuesday, after whingeing at my GP by email about the inordinate length of time and multiple appointments(8), I had undergone, still without resolution of my angina problems, I received a surprise phone call from my cardiologist’s secretary, saying they could finally operate to insert a ‘stent’ in the artery of my heart as an urgent procedure that Friday (15th) at 7.30am at the Manchester Royal Hospital. “Yippee” quoth I, had they finally cut-to- the-chase after seven months of, what was to me, wasting time and NHS resources on a condition that was already identified and quantified. My cancer consultant and my GP had both made clear the need for speed at the outset, because of the likelihood of me requiring chemotherapy imminently. But seven months and eight inconclusive appointments had so far not resolved the matter and it looked as though another few weeks waiting was likely.

But nonetheless I was delighted to be finally getting ‘done’. So as Friday 15th August dawned at 5am, Jane and I drove from our Peak District home to the hospital in central Manchester, arriving 20 minutes before my 7:30am appointment. There followed a day plucked from the script of the TV series ‘Casualty’ in which, you’ll be pleased to hear, I only played a bit part.

Act 1 saw us waiting an hour for a BED(!) in the Manchester Coronary Care Unit (CCU). I was then pre-opped as a lovely nurse filled in seemingly endless forms covering every aspect of me, my life and condition. This ultimately raised the story of my blood platelets (of sacred memory, a bit of an issue last year when they dropped inexplicably then bounced back up to my normal 100’ish level). Communication with the cardiologist highlighted his concern on operating below a reading of 90, and a fax from my cancer consultant showed that my last check in July had read 86. A blood test was taken which showed a current reading of 76! It looked annoyingly as if they would have to cancel my operation today.

However, my cardiologist, Dr Malik, then came to see me on the ward, still swathed in his anti-X-ray lead suit, resembling a Samurai warrior minus the very sharp sword! Dr Malik of course knew the importance of the stent to maximise my heart function prior to the expected further chemo. He told me he was inclined to proceed with my op on the understanding that I was fully aware of the increased risks of bleeding with my low platelet count. After a pretty detailed Q&A session I decided the benefits outweighed the risks and agreed to go ahead with the stent operation. After all, I had had an almost identical angiogram op only a month earlier, with absolutely no bleeding issues and I was confident the same would be true this time. Dr Malik then returned to theatre with me next on his list. It was now 2.30pm and we had already been there 7 1/2 hours. Poor Jane was tired, anxious, bored, frustrated by the delay, but obviously apprehensive at the talk of high risk. I was hungry! I was on ‘Nil by Mouth’ since last midnight and actually hadn’t eaten since 7pm the previous day; even the cling film covered dishes of grungy hospital food being consumed by fellow patients seemed almost edible – were that possible.

After chatting with one of the nurses about how relatively quiet the CCU was, all hell seemed to break lose, as three urgent heart attack victims were hastily admitted one after another in completely unrelated incidents. We couldn’t see much behind the screening curtains but that did little to dampen the audible drama going on as very distressed patients shouted and groaned and those iconic words, “Stand Clear” were heard more than twice as defibrillators did their shocking work. This drama played out over some hours as the poor patients were rushed first to the cardiology lab, where I was supposed to be, then on to Intensive Care.

It was around 6.30pm that an exhausted Dr Malik returned to my bedside, still in his Samurai-like attire, apologising for the long delay and saying that unfortunately he would not be able to carry out my stent procedure today. The emergency patients had obviously taken priority. However, he had arranged for me to be ‘done’ by the senior cardiologist at the MRI, but not before next TUESDAY!!! Meanwhile, he wanted to keep me in for the next five days monitoring my pesky platelet count with daily blood tests. Oh Joy, another extra-long weekend enjoying hospital food; my cup runneth over!

So here I am yet again collecting material for the ‘John’s Guide to Fine Dining on the NHS‘. If they keep sending me to different hospitals this will be a weighty tome full of hints and tips on the toothsome delicacies I discovered therein, although to be brutally honest toothsome delicacies are non-existent as the microwaved muck perpetrated by that evil empire SODEXO has infiltrated the NHS to its core. Sodexo are the same people who fed our schoolchildren Turkey Twizzlers, before Jamie Oliver’s high profile assault on the filth that used to pass as British school dinners. And today their sweaty offerings are fed to NHS patients. Can this be right? If you ask me, hospital meals ought be treated as secondary medicine; nutrition is crucial to health and a bored patient, often in pain with little appetite, has only mealtimes to which to look forward. These vile offerings from this apparently obdurate multinational should have no place in our health establishments and we are fools to allow this farce to continue as it has for decades. I watched James Martin and several well known TV chefs demonstrate at several hospitals in their BBC television series on hospital food, that really good, nourishing, locally-sourced and tasty meals can actually be provided in quantity AND within budget by applying a modicum of imagination, communication and logic. Rise up Oh bilious patients and wrest the right to decent grub from the pocket-lining plutocrats that are stripping our NHS of millions and our many fine quality food suppliers of their rightful business. Government: this is one of the drains down which the billions poured into our fabulous NHS is sluicing. Stop this idiocy NOW!

Good Lord, I needed a good rant! Does one the power of good, so it does.

So after four days of almost total boredom denied communication by wifi or cell, 6am Tuesday morning saw me finally being prepped for my stent procedure. I was pumped full of blood thinning drugs, supplied yet another blood sample, denied all food and drink and dressed, fetchingly I have to admit, in voluminous paper knickers and the ubiquitous hospital gown with its back-to-front rear opening. A quick twirl in the mirror confirmed my fears for modesty as I shrugged on my dressing gown. At 10am I was marched to the ‘Cath Lab’ where I was to be ‘done’. The ‘doer’ was Dr Vaz, one of the senior cardiologists, and in a highly efficient process involving about six staff I was soon lying on a very narrow table surrounded by tracks and rails and heavy equipment and many, many monitors in a great bank to my left. To my surprise, after the angiogram via my groin, they were going to use my right wrist as access to my arteries and this area was swathed in protective sheets, prepped and injected with a local anaesthetic. After that things proceeded with reassuring efficiency. Dr Vaz orchestrated a symphony of machines and acolytes and I could just see in the bank of monitors the progress of the thin tube toward the restriction in one of the arteries supplying my heart. Strangely I could feel nothing but the slight pressure and small manipulations of my wrist. As the vital work was being done deep in my chest I could feel absolutely no sensation whatsoever, and after about 35 minutes Dr Vaz said “All done” and happily, “……all things being equal, you’ll be going home later today!”

And so it came to be. After another six hours of recovery, where the ‘wound’ such as it was, was monitored under a very clever, clear plastic, pneumatic, pressure cuff, I was allowed out and walked all the way to the car, about 1⁄4 mile, without so much as a pant! That’s more than I can say for poor Jane as she lugged my bag, refusing all assistance – she may be petite and beautiful but she’s such a tough little cookie too!

Anyway we came home, flopped onto the sofa as a lovely sunlit evening wained and delighted as a red deer hind and its Bambi-like fawn gambolled in the meadow just behind our home. Was I pleased to be home? Oh yes!!!

More later as a newly-stented me hopefully races forward with renewed vigour and a good deal more puff! Thanks as ever for your many replies, advice, humour and the usual abuse – all greatly appreciated.

#2 – It’s about me… again

Sooooooooo, it seems I’ve been malingering, ‘swinging the lead’ as it were. Last month’s ‘Topic’ saw me laid up in the Christie hospital with an erratic temperature, an unpredictability of bowel and a general ‘not-rightness’, which, for those of you who know me, will recognise as not right at all. Anyway, after numerous tests of every fluid the human body can produce, an X-ray and a CT scan, the assembled doctors felt that I had acquired some kind of virus which was elusive enough not to show up on any of the tests done and didn’t appear to be related to my cancer. So after four days I was discharged on the 26th June and told to return on the 14th July for the results of the CT scan. Still feeling a bit washed-out I was never-the-less delighted to return home to some decent food, as hospital food, even at the otherwise most excellent Christie, is still frankly atrocious.

The following week held further excitements; I was scheduled to have an angiogram at Stepping Hill hospital, Stockport; a procedure I was very keen to undertake to alleviate my angina (a heart condition probably caused by my earlier chemotherapy) which was causing me increasing breathlessness and limiting my range and ability to do stuff. The cardiology doctors were anxious I was clear of whatever infection I’d had the week before, which a blood test on the Monday confirmed, so on Wednesday I reported for the angiogram. This is a quite common procedure these days for inspecting the arteries supplying blood to the heart.

So here’s the dilemma; they make a tiny incision into your femoral artery at your right groin into which is inserted a tiny tube. They then proceed to ‘furtle’ (technical term) the tube through your arteries all the way up to your heart. Once there, they inject an X-ray dye into your bloodstream, causing a sensation not unlike incontinence (not actual you understand, just the sensation!) as a warm glow spreads warmly around one’s nether regions. All pretty painless, although a bunch of people poking about in a chap’s intimate little places can be a bit startling, to say the least! Anyway, when they’re done with furtling, they plug the arterial hole, placing a large patch of what appears to be a Sellotape over the tiny wound. It’s a bit sore for a few days of course, but the worst bit is now I’m looking with some trepidation at the way the Sellotape seems to have fused to my delicate, hirsute and very sensitive skin. Had I anticipated this issue a prudent solution would have been a ‘full Brazilian’ where some careful shaving might have pre-empted the dilemma; indeed I was surprised the medical procedure didn’t include a quick shave. But that’s ‘the funding cuts’ for you, no frills and definitely no cosmetic procedures.

However, the removal of the Sellotape patch seemed akin to a bikini wax! (Err….I’m reliably informed). I wasn’t looking forward to it at all. There’s that inevitable choice between ‘rip and scream’ or the more torturous process of ‘peel and whimper’, each seemingly equally awful. In the end I opted for a median route, fearing that the former might reopen the incision causing gouts of arterial blood hosing all and sundry – (bit dramatic, I’ve obviously been watching too many gory movies).

Anyway, the angiogram showed that I do indeed require a further procedure called a stent which will be carried out in yet ANOTHER four to six weeks! When it’s done, using a similar technique to the aforementioned angiogram, I should have a lot more puff and will be much better able to withstand the rigours of the next phase of the cancer treatment, but more importantly I hope to be able to be much more active and get out walking around my home valley go on holiday, maybe caravanning? (Karl, enough! I’ve told you once)

All of this has concentrated my mind on TIME. I’ve decided to finally retire from work and spend more quality time with Jane and the family. My days as a fashion photographer are over and I’ve enjoyed them immensely, but in fairness the job has expanded so much that one photographer would never cope with the enormous increase in workload or the continual ramping-up of quality imagery and technique that international online retail now demands. The company is now moving to the next level in their dramatic growth with some exciting new concepts being put in place for the future. I’m pleased to have played my part in their success, but equally pleased to relinquish my responsibility and R-E-L-A-X a little.

The good news on the 14th July, was that the results of the CT scan I had a month back showed virtually no change in the cancer which remains indolent. This means that my consultant, Prof. Radford, sees no reason to commence any procedure and has signed me off for another couple of months. So here I am today, sitting in the dappled shade of my garden on a glorious day with a cold beer, the singing of the birds to the gentle babbling of the stream as it meanders around my garden and pondering that eternal question, why does running water always make you want a pee?

I’ll end here with that thought. Many, many thanks to the dozens of you who replied to my first ‘Topic’ and the kind thoughts and humour they contained. I’m doing OK, having just returned from the stunning wedding at our old friends Ron and Gayle’s, when their daughter Anna was married in south-west Wales. This was the highlight of a delightful long weekend with Jane, when even the weather cooperated to make everything perfect.

#1 – It’s about me…

For those of you who might remember about four years back, I sent out a series of emails chronicling my treatment for a rather nasty form of cancer called Mantle Cell Lymphoma. The initial purpose of writing was to keep our wider family and many friends, informed, and to reduce the flow of lovely, concerned, but ultimately taxing enquiries to my lovely wife Jane, who’d had enough to put up with being married to me for 40 years and now had the sick version being endlessly enquired about. So I cobbled together an irregular email bulletin which I could send out from wherever I happened to be – home, hospital, chemo suite, toilet, etc. From the couple of dozen original recipients who apparently found my updates interesting, I received a steady flow of requests from other friends, villagers, acquaintances, parishioners, drinking buddies, ne’er-do-wells, hobbledehoys and lovely people of whom I had never heard, to be included on my mailing list. After a few months the mailing tally exceeded 100 and I was getting many messages of support, encouragement, love and humour in reply; (plus excitingly, offers of easy access to drugs, equipment and exotic fashion in fields of endeavour of which I was previously totally unaware!). The writing was a great way for me to fill the long tedious days of hospitalisation, treatment and slow recovery. The emails culminated in early 2011, when, after many alarms and excursions, a successful Stem-Cell Transplant allowed my discharge from the fabulous Christie Hospital in Manchester in complete remission, but with the knowledge that the cancer would, at some point, return.

Yep, three years later the little bugger has come back. So I’m currently writing this, sitting up in bed at The Christie trying to reinstate my health bulletins but in a new sexier, more dynamic form appropriate to my new profession as a fashion photographer, of which more later. So I’m going to write down some thoughts and observations on, well anything really; poetry, poo (bit of an authority on this subject), pies or piety, to alliterate but a few. Close family and friends will be up to speed with what’s been going on recently, so will they please forgive any repetition as I reinstate these bulletins to everyone on the earlier mailing list who expressed an interest, (or who had access to said drugs, equipment, exotic fashion, etc, wink and tap side of nose).

So three years of high quality remission ended last September when a blood test showed a plummeting ‘platelet count’ (that’s the bit of your blood that makes it clot and heal wounds, bruises, etc.). But after a flurry of tests, scans and, my personal favourite, a bone marrow biopsy, where they bore into your pelvis with an auger, eventually revealed that the cancer had returned, but only in a tiny, less than 1% in the bone marrow only. Since then I’ve been feeling fine, the blood platelets recovered and I’ve been carrying on as normal. The Lymphoma team at The Christie decided to adopt a watch and wait policy as the cancer was “indolent” (love that word. Think I’ve got a wide streak of indolence in me!). Anyway, indolent or not, the bugger was going to cause trouble sooner or later so we’ve had several meetings with the consultants to develop a strategy for when it does.

Option 1 was chemotherapy, with a couple of alternatives. Option 2, was another stemcell transplant, but this time using donor cells, not my own stem-cells as before. However, a transplant requires me to be in remission, so effectively this therapy had to follow option 1 not simply replace it. Donor stem-cell therapy is in its infancy and consequently fraught with complications and extreme risk. The upside was the 30-40% possibility of a cure or long-term remission. The downside, and it’s a very big one at 60-70%, is seriously buggering-up my immune system, or worse maybe a visit from the grim reaper. Well, you can see my dilemma – there ain’t one! As I’ve said many times to close family and friends, I’ve had the bad news four years ago; incurable, terminal cancer does exactly what it says on the tin, so I’ve there are no surprises here.

The great thing is that, up to a few days ago I was perfectly fine, enjoying working five days a week, just had a week’s holiday meeting up with two of my brothers and thinking about retiring properly from the really tough job of photographing beautiful young ladies modelling this seasons bikinis! (If you don’t believe me follow the link to see the fine body of work (literally), that I and my lovey assistant photographer, Liv have been creating recently for my daughter’s company, Country Attire – http:// www.countryattire.com/womens/swimwear.html . Pretty well all the photography on this whole website is my work over the past three years and I’m very proud of the pictures and the company, which is a tribute to daughter Jenny and husband Richard who have built it from nothing in eight years). I’m now thinking of retiring fully, maybe travelling a bit, caravanning (Shut up Karl!), writing, DIY, gardening, you know – stuff, or as my darling wife more technically calls it – Faffing about? I was feeling pretty fit for a 66 year old and plans  are afoot to sort out my Angina which has been my biggest limiter. Then last week I felt a bit off colour, with shivers, trots, temperature and reduced appetite. On Saturday I checked back in for tests at Christie, which is where I am now. So far they’re not sure whether I’ve picked up a bug, or it’s the cancer beginning to rise from its indolent bed. I’m having a CT scan today which, in a day or two will tell us where the little bugger’s at.

I’m actually feeling fairly OK at present, albeit with some strange developments in the toilet department which I’ll save for a later edition, and I’m hoping to be sent home before the end of the week. The Lymphoma team at the Christie is amazing and holds my complete confidence, so thoughts of chemotherapy are not as daunting as they were four years ago. Huge strides have been made in recent years to make these treatments much more finely focussed on the specific condition, with far fewer side effects. And my consultant, Professor John Radford, a world authority on Lymphoma, is very hopeful to get me started on a new American wonder-drug which has delivered some amazing successes in the US, combatting precisely the Mantle Cell Lymphoma from which I suffer. It’s not a cure, still a chemo, but one that can be taken orally at home. So no long hours of schlepping down to hospital every week to sit for bum-numbing hours as bags of poison are dripped through painful canulas into the back of your hand.

But more of this as things develop. Keep yourselves pure for me in the interim and of course do reply if you feel the need. Watch this space…