Ten Years After

Ten Years After were a moderately successful rock band in my youth, that's not remotely relevant to this but the name won't shift from my head having floated in...as it's ten years today that my first cancer treatment finished, so time to reflect I think.

(Believe it or not, the anniversary has been marked by an appointment for an "MRI neck" popping through the door this morning, will explain later)

I say the treatment finished but as we all know, that's a long way from the end of the process, it actually gets harder for a bit. Then you get (I did at least) other stuff to deal with; lymphoedema, disobedient taste buds guarding a swollen and scarred throat, feeding pump leaks soaking your bed in the middle of the night, crippling depression (PTSD), dodgy hearing, shoulder weakness/lack of mobility (from dissection), learning to eat (when that becomes a viable option) with what were significant teeth missing, need for skin care and mouth hygeine routine (hated that) and generally feeling undescribably awful!

In my blog I wrote, "..when I look in the mirror I see a guy who's aged five years; don't like that very much."

That was all the pretty much immediate aftermath, though as far as anyone one not "in the know" as we all are unfortunately, it was over. I was better, I'd won the battle, I was sooo brave, I'd kicked its a**e, lets have a party!
Just NO, not their fault of course, everybody means well but you (or I at least) just wanted people to f**k off and leave me alone.

This post would go on for ever if I tried to detail what happened in all the intervening years up to today so I'll just do some highlights...and low points.
Big high was the friendship and understanding of people on here, so many names over the years it seems frivolous to single people out, but Dani and Hazel for commitment and longevity take some beating, love them both. Hundreds of people make an impact in our little section of Macmillan but some go above and beyond!

By the end of 2014 my eating had improved along with my taste, but not to the extent that I was really enjoying it, complans were a big part of my diet for years, and curries (which I'd previously lived on) were out of the question.

We muddled along, as you do, for the rest of the decade; the grandchild count rose to ten (while losing my mum and Debbie's dad) and our life was pretty much back to normal (or "new normal" which I'm convinced I coined but everyone uses now). Son, youngest child, left home so it was just the two of us. Got my five year "all clear".

Was my sixtieth birthday, and our twentieth anniversary, in 2020 and all seemed good...in our very modest way, we were very insular and only really spent time with family, but that was how we liked it so no complaints.

Those that have been here a while know all about how my world went to pieces later in the year, so I'll not go into detail, just the bare facts. In July I was struggling more that usual to swallow so after a brief chat with my GP on July 6th I had a COVID test (14th), saw ENT (16th), had an MRI (21st), a PET-CT (28th) then went in for a biopsy on the 30th when they told us I had cancer again, not a recurrance but a brand shiny new one on my larynx. Treatment options weren't discussed but we knew RT was off the table after thirty-five doses in 2014, not a great day.

But then of course, as people are aware, Debbie died four days later...with no warning. She'd had a "chest infection" so had been referred for an x-ray but COVID was delaying "routine" stuff so the appointment hadn't arrived, in fact the postman delivered it that very day. It was pneumonia and a lung abscess that killed her, but had it not been for the x-ray delay she'd have been treated, so in my mind she's every much a COVID victim as anyone who died from the virus, but that's a whole new thesis.

(I'm sorry this has become so long, wasn't my intention)

Managed to get the funeral arranged before my surgery on Sept 15th, which was what I'd chosen from the treatment options presented to me; I chose the "belt and braces" option of complete salvage laryngectomy (other two options were less invasive but less effective and reliable laser surgery, or palliative care...they estimated I'd have six months). Major stuff, 10/12 hour op,but I think I was probably still in shock so wasn't greatly concerned. As my voice would be gone forever I discussed with my son (now moved back in) what my "last words" should be, and we settled on, "...don't f**k it up" which I then repeated to the lovely folk in the operating theatre, having walked in and put myself on the table due to COVID protocols, no anaesthetic room in use. Happily for me, they didn't!

Spent four weeks on the ward then learning about my new way of life, visitors few and far between due to virus but with my communication difficulties was no bad thing. I don't think anyone actually enjoys being in hospital but I have to say I feel very comfortable there. Those weeks, and several stays since, I'm able to tune into the routine, have learnt the secret of sleeping well in a hospital bed (vital) and enjoy the interraction, even with people wanting to stick a needle in me (or worse).

Home for four weeks; then an unidentified infection during a check led to a bleed during which I redecorated a room (and myself) in ENT out patients by coughing up several pints of blood. Rushed into surgery, had to go through the crowded waiting room looking like an extra from A Nightmare on Elm Street, which raised the odd eyebrow. Was extremely fortunate to be in the hospital when it happened, at home it'd have almost certainly been the end of me....and my son would've had a hell of a time cleaning up.
That was another week on the ward in a "high-viz" room.

Since then, up and down and up is probably the best description. Came off feeding tubes after around six months, still needed supplements, but was pretty good all things considered.
Then for no apparent reason it wasn't good, cancer wasn't a worry at all for me, I had every confidence it was gone, but throat pain was still bad...and mentally I was in a bad place (again). My son (Josh) who was back home looking after me and had learnt to lip-read me, bless him, was beside himself really because I was barely eating, was in bed sixteen odd hours a day and was drinking heavily.

Again, not going into huge detail, last year was another turning point. I had many falls (smashed my one good shoulder), was malnourished/dehydrated, horribly low blood pressure...and when I fell I couldn't get up due to both shoulders being pretty useless. I had three hospitalisations over the year, the last one being in Aug/Sept for four weeks. I knew the last one was bad when my brother and son took me to A&E and the triage nurse rushed me through, so no six hour wait! A little later one of my new team (I seem to collect them) said they'd brought me back, "from the brink" which was a sobering thought, both metaphorically and literally. So I now live with cirhossis, although not curable it can be abated and reversed to an extent by good diet and daily cold showers (not really).

Then had more trials, only real ones this time in the crown court, of people who'd done serious harm to my family; I could do little other than sit mute in the public gallery offering moral support to my kids/grandkids, but I like to think it helped. There are now two very deserving excuses for humanity serving fifty-eight years at his majesty's pleasure between them, a very satisfying outcome.

My life now has improved immeasurably since last September, my appetite is far and away the best it's been since 2013, and I can eat a fairly hot curry (Jalfreizi/Madras)!

Having said in my blog that I looked five years older back then, I reckon I'm now looking at least five years younger than I did last year. 

Just thought I'd not mentioned, for anyone who doesn't know and has read this far, that I'm now a neck breather...so my nose and mouth are disconnected from my airway and I have a hole in my neck that I breathe through, I used to hide it but I'm now out and proud, makes me smile when people do a double-take in Tescos. I communicate pretty well I have no voice at all but can enunciate sad7777778z\aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaajjjjjjjd4 c,l0vw
(Maya, cat, relatively new addition to the household and a total joy, just jumped on the keyboard while I was getting food out of the oven, seems she has communication issues as well)
...can enunciate pretty well, and Josh translates with anything complex or on the phone. Many/most laryngectomees can have a speech valve fitted so get a new artificial voice, but tissue damage caused by RT meant it wasn't an option for me....but I'm really OK and content; I don't look on my communication issues as a problem for me at all...sometimes it's a problem for those I'm trying to communicate with, but that's on them|

So I'm sixty-three, six weeks away from when the famous "Will you still need me, will you still feed me" age hits, and single, which was never part of the plan...but it's really difficult to envision any way my marital status will change. Apart from my obvious foibles (NOT disabilities) I have collection habits that would test an angel...I have thirty-one guitars and a mandolin, closing in on fifty watches, far more leather jackets than is good for you and I'm approaching Imelda Marcos numbers in the shoe department. Waistcoats is a new one...and hats...sure I've forgotten something.

Apologies again for the endless waffle which makes only an occasional nod to cancer but it's where I am, cancer defined me for quite a while but it doesn't anymore; it's just occurred to me that I had an early stage prostate diagnosis last year (not bad enough for treatment, just being monitored) and I never give it a second thought. My alarm goes off at 8.00am every day now, enjoying life, I could stick Hazel's mantra in here but I understand she's copyrighted it

The MRI neck appointment (mentioned at the start) is for next Tuesday, I still have swallowing pain which is very annoying at times, I'm prescribed morphine, and they're going to have yet another look to try and find what's causing it. Fingers crossed they find something this time. Have an orthopedics appointment on the same day to discuss a possible shoulder replacement, so hopefully another couple of steps further on up the road.

Wishing everyone on here the very best, there is very much life after cancer for the vast majority of us, used wisely or not, look forward to other people waffling "ten years after".