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A happy outcome…. Life after an Ivor Lewis. 31 March 2018
In January 2011 I was “power walking” in Winchester and simply collapsed on the pavement, utterly short of breath. A kind passer-by called my wife and she took me to our GP. Their checks said “no heart attack” but go to A&E (Winchester). A&E suspected a brain problem and gave me a scan. Nothing found, so “go home”….
Both outfits missed the massive lung clot(s) and I spent the next months dissolving it/them away without help, slowly getting back to rude (you can’t blame me!) health. Later I was diagnosed by UHS as a double pulmonary embolus, provoked by my growing oesophageal cancer. Not creditable to the Winchester medics! Better medic work would have cut the C growth time by 8 months. To my shame I think some “overeating-for-comfort” in the recent years, necessitating copious indigestion pills, may been the cancer cause. Ever since, I’ve counselled other over-eaters/pill takers.
In July 2011 I could not swallow hard apples and went to my GP. Hurrah! He prescribed a month of even heftier indigestion pills! No change of course, just another C growth month. Now really worried I did get endoscoped at Winchester, revealing 135mm of tumour. Scans at UHS confirmed this and also found 80 small clots left over from my self-healing, clot busting, spring. So began a 3 month programme of self-jab Heparin injections… and a pin cushion tummy. (Confirmed by a later high definition scan, this mopped up all 80. Good medicine at last).
Now in the best hands of Jamie Kelly’s team at UHS Southampton, who bravely gave me a chance of 3 months of (hopefully) pre-op “EOX” chemo. Very nasty of course, but I was lucky to weather it without completely disabling side effects. My great wife Susan was the best of loving supports and a week with friends on their boat in Spain did wonders. I took the chance to write up my RAF flying adventures age 16-22, and I think finding an absorbing exercise to stop one worrying about the chemo when “sofa bound”, was very valuable. Perhaps that’s a distraction to recommend to other chemo sufferers? NETFLIX too!
I believe the tough EOX (?platinum) chemo has been replaced by a new one with fewer discomforts. Excellent….
It was cold winter and to cope with the extreme sensitivity to cold, interesting to suss-out the best insulating wrappings:
– Finger gloves hopeless, but OZEE Microlight pilot’s soft padded mitts, (warmest with all the 5 fingers in the big bit) perfect.
– An OZEE microlighter’s padded onesie flying suit
– NORTH FACE light softly padded “snow boots”, these were essential for morale boosting trips out..
– Baby’s plastic cutlery….. Family giggles!
No sense of taste and painful salivating cured my over-eating for ever!
The pre-op laparoscopy was a turning point. Donna Sharland told me that the chemo had worked exceptionally well! So onward to the cutter’s slab in a month. The op. was managed by a memorably charming gasman and Jamie spent 8 ½ hours doing the UGI bit, hindered by my lower gut bits stuck together by a burst appendix when 5, with 3 months of infection. I had tried to explain this in advance, but Jamie was still rueful about the extra work!
Except for having it seemed about 74 tubes leading in and (mostly) out, life in UHD and onward was really quite good fun, sharing wards of 6, so that there were always jokes and chaps worse off to comfort in the long nights. The care and charm of the lovely nurses kept us all on the right road, wonderful. Our “old drug peddler” rounding each 3am was once persuaded to bring some extra Oramorph to cheer us up… Very nice, with little full colour video clips afterward…. Good stuff. Wonderful home support including delicacies (best UHS food just the sandwiches….). My nice son took holidays to join us, but I’ll never look again at his phone snap of me at the 74-tubes stage!
Jamie’s top USA counterpart from Seattle visited HDU on the morning after and I was shown off as a possible prototype “go home after 3 days” chap, which his US visitor was keen+ on (why?)….
– “Do you know the USA?”
– “Actually, I have been to Seattle but got arrested there at carbine-point…” This, with a small story: I was hitchhiking down the West Coast, in my “foreign” (RAF) uniform, outside the Boeing Works, when my gun-toting captor seemed to think I was some sort of spy/terrorist, but quickly mellowed to feeding me coffee and donuts.
– Explaining my ambition to reach California, he waved a magic wand and got a military transport plane “de-scheduled” so I could hitchhike on it down to San Francisco…. (I love the friendliness and theatre that Americans rejoice in offering!).
This slowed up the visiting US Prof’s rather bossy spiel.
I woke at 7 next morning, gagging with refluxed acid in my windpipe, absolutely terrifying but a Saturday, so I had to wait till 2pm before a (harassed) young doctor could attend… Hmmm. It felt quite a triumph to (painfully) march along the corridor next day with a scampering retinue of nurses pushing the drip stand and each carrying one of the several waste bags!
Some brilliant manipulating of the paperwork for my threatened planned instant exit home, by our nurses, kept me in for a sensible 6 days! Bless those cunning angels.
Home to the loving care of my wife, also son and daughter who took holiday to help. No medic support except wound dressing by our delightful District Nurse. So much to sort out at home, not least anxiously trying to settle to a nourishing diet. Notes from UHS were useful but the saviour backup were the FORTISIP food bottles (in their several pretty awful flavours! Banana the worst?). But I kept a stock of these for most of a year in case nothing else would go down. A real psychological anchor…..
Actually, eating just got better and better and for a long time it’s been just the same as of old except for leaving a gap between main and pudding …. This has actually become a nice leisured family meal plan.
(And often an end-of-evening top up to assuage ”the munchies” then).
Sleeping ½ sitting up (after my awful reflux in UHS I wouldn’t risk another and I’m sure avoiding reflux must make a longer life) proved difficult.
– First a pillow stack.
– Then a costly wedge pillow from the internet:- useless.
– Then a big sloped DIY contraption with 100mm of memory foam:- Not much better.
– Back to pillows, but now with a travel pillow under-bum to help stop slipping down:- Still bad.
– Finally, an electric quasi-hospital bed, really good value, from BETTERLIFE!
Six years on it still makes sleeping tolerably comfortable and this winter a Boots furry hot water bottle under-bum stops slipping down better than anything…. It’ll be a cool one in summer!
Three months post-op I was back flying our little microlight aircraft with also-pilot wife Susan. Off to Wales where another Ivor Lewis op chap was not in good order a year post-op… His tummy entrance kept needing stretching open and frequent “dumps”. No better now but alive.
Dumps! Hmmm. We are told they are triggered by a lot of sugar passing straight through to the small intestine and surprising our subtle digestive control system. Yes, but I found early on that a big dose of protein (eg roast duck) was worse and made one feel weirdly “off-the-planet”, cold sweats, dizzy, sort of nausea as well, ½ an hour to recover. But for years now I can eat 2 Mars bars in a row and smile. The protein guzzle problem has gone away too. But I can still get caught out, by curry soup recently. Rapid exit from the middle of a row at our local theatre….. Whew!
Back to getting back quickly post-op to one’s enthusiasms (first for us our little aeroplane). I think this can be extremely important and a spur to settling into a cheerfully unselfconscious lifestyle again, which must be our prime aim and perhaps best for longevity. (Jamie pointed out that the best way forward was more or less this, practiced best in Australia, and badly in the USA with too many follow up scans etc. I agree).
I think I’ve probably been very lucky (now six years post-op and 83) and forever grateful for the human and surgery skills and the friendship of Jamie, Donna Sharland and their team.
We wish the same good luck to all, Ralph (and Susan) Chesters.
firstname.lastname@example.org Chat anytime please…….
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