So… where to start…
Okay… firstly this has been written purely to get my thoughts on the last 5 or 6 months down onto what passes for paper these days, a blank Word document, using a nice neat font and an aging laptop… I apologise in advance for anything that comes across as self pity… but it’s been a rough ride for my family just as much as it has been for me.
June 10th 2018, the day of the pre E3 Microsoft show, and a day I spent on the golf course playing the bets round I’ve put together for years followed by a couple of pints of ale in a village pub… onto the conference and a pair of earphones to keep the audio to myself and not interrupt the other family members watching something else on TV.
I removed the earbuds but the hearing in my right ear didn’t come back, it was muffled, and would come back only temporarily when pinch my nose and blew… it was like I was at altitude and was waiting for my ears to pop.
Anyway… long story short, it was passed off as a case of “adult glue ear” and would cure itself in a few months.
But then headaches kicked in big time, painful migraine levels of pain, accompanied by Tinnitus and a near total loss of hearing in that ear… mid September the left ear started down the same path… and I caught a light case of the flu.
At this point I had a hospital referral come through, and the “adult glue ear” diagnosis confirmed, hearing tests were done and my hearing loss put at 85% on the right and 70% on the left… the world had become very quiet and I was becoming more and more isolated… work was almost like I was in a separate office, I could see people chatting, laughing and conversing… I just couldn’t take part in it.
An operation was scheduled to drain the fluid trapped behind my ear drums and get my hearing back… but by now that was almost small beans compared to rest of it.
My joints hurt like hell, and not just the major joints like ankles and knees, every joint… every knuckle on every finger hurt like hell… the cough element of the flu was still hanging around and that was now so bad that I would go through bouts of coughing so bad that I was struggling to catch a breath through the coughs… I couldn’t get comfortable to sleep from the joint pain and couldn’t breath when I lay down because of the cough.
Sleep was only managed if I propped myself up on the sofa, covered myself in a thick blanket and eventually passed out through exhaustion.
The operation came… and failed.
There was no fluid behind the ears to drain, my hearing was still screwed… but the surgeon, a wonderful man to whom I owe so much, administered two steroid shots and prescribed a weeks course of Prednisolene… the joint pain vanished, my hearing perked up a little and things were looking good.
It didn’t last.
Once the weeks medication was done, the pain came back… and I broke.
November 18th was not my proudest day ever… but there would still be worse to come shorty after.
November 18th… after a night of very little sleep I was sat on the sofa and watching TV, I wasn’t really capable of much else, even a walk to the shop round the corner was a struggle, and earlier in the week I’d managed to walk the two and a half miles to work and been accosted in reception by well meaning people who instantly offered to take me home I looked so bad… and they were probably right… I felt like crap but wanted to work to be at least do something.
Anyway, my significant other snapped, she’d slept less than me as my coughing kept her awake more than me, and she gave me a mouthful of abuse, something she’s admitted (knowing what we do now) she feels guilty about… she unloaded with both barrels and I can’t blame her.
In response I broke down, through tears of pain and frustration I pretty much gave up on life… I told her that the reason I did nothing other than sit there was because it took all my energy to get there in the first place, that I was sorry this wasn’t ideal, but that while I didn’t know what was exactly wrong with me what I did know was this it had broken me, and if she didn’t mind I was going back upstairs to curl up in a corner and just wait for the end… that I had no more to give and didn’t care how it ended as long as it did.
I shambled upstairs, collapsed on the bed and cried.
After a respectable period my better half came upstairs and held me… still sobbing I declared that the worst thing about it all was that I hadn’t heard our daughters voice for almost 2 months, that the one thing in life that makes me proud with everything she does had become a passer by almost, and I hated that more than anything I had become.
The next ten days weren’t much better.
Three days later I had an appointment with the surgeon again, armed with blood tests he gave me the news that my hearing would never fully come back, that what I had was incredibly rare (it affects 1 in 100,000 people) and was the reason behind my hearing loss, the joint pain and most likely the cough… my other half was more shattered by the news of my hearing than I was… but then I was concentrating on hearing what he had to say and didn’t want to miss any of it.
I had to go back to work after… that wasn’t good… I needed a few minutes, well 15/20 or more, to try and compose myself… it failed and when I went to break the news to my boss more tears flowed… I couldn’t see an end to any of it and that scared me.
With another referral to a different hospital being worked on (the ear op done at a private hospital that did a small number of health service appointments, one of which I had been granted due to my partner working there) it’s fair to say that the feeling of being “broken” was now well set.
Tuesday 27th November… another low… scrub that, a new lowest of the low.
Family funerals are never good, and this one was terrible for other reasons than burying a dead relative… my mother was one of eight kids, and following this funeral she was now the last one of eight kids still alive… we attended to help my mother even though I wasn’t really in any condition to go.
On the way from the crematorium to the wake all my energy vanished, didn’t finish my drink, was shuffling even worse than normal and in front of half the family as well… at this point the guy in the box had probably been in a better condition than me… there were people at the wake maybe 40 years my senior who were moving better than me… I ended up scaring half the family and certainly my mother.
On the way back home from the wake I got a phone call… at this point a very interesting thing as I was now even more hard of hearing that before and awaiting a call from the hearing aid centre to get a fitting… I could barely hear people speaking to me, which made conversation hard.
The better half had left me in the car while she grabbed a few groceries, wary that I was struggling more than usual and didn’t want to tax me any more than I needed to… I rejected the call.
I checked the number and it was University Hospitals of Leicester… who thankfully rang back when I wasn’t alone and my good lady took the call, explained why she was speaking on my behalf, and passed on the news that my new referral had come through and could I make an appointment the next day?
Yep… no problem… I attended expecting a few brief tests and then a second appointment.
I felt like sh!t… the bad afternoon of the day before had not been helped by a lack of sleep due to the coughing again… but was ready to go back to work after the appointment… that didn’t happen.
While November 28th started off as a bad day it was also a turning point.
The consultant watched me shuffle from the waiting room to her office and admitted me on the spot, and treatment would start that day… and thus began her habit of scaring me every time I see her.
I would be admitted for treatment… fair enough me thinks, then I’m informed that treatment will take just over four months… how long am I going to be here for me thinks now… calm down, I won’t be here that long, which was true… then she dropped the bombshell that my treatment is six sessions of chemotherapy… bugger.
It’s never a good sign when a nurse tells you that you look very ill, my special someone had to go home to pack me a few things… including buying pyjamas as I never wear them at home, a change of clothes, books to read and so on… she admitted later she had a good cry in the car before she drove off… and admitted later still that when she left me in the ward that night she wasn’t sure she’d see me again… seems the phrase “death warmed up” was a pretty apt description.
Fast forward to now… I’ve had five of my six chemo sessions, and while they themselves are fine (but dull and long affairs) the four or five days after are hell, with constant nausea and tiredness… and I’m not getting the full, cancer patient levels of the drugs… roughly half from what info I’ve found online.
On the plus side… I’m free of joint pain, my cough has vanished (see next paragraph for the scary consultant line on that one) and I’ve put on some of the weight I’d lost which was 27 pounds in 7 weeks… I’m decidedly on the up.
The cough… yes… well… on day of admission I had a chest X-Ray which showed some circles on my lungs which I was told were cavities and the reason for my cough, these, I was told, were very common with my condition… but not uncommon with Lung Cancer either so I’d be checked out for that one by yet another hospital… this hasn’t happened yet, and probably won’t, with the medics certain they were there solely due to my condition.
I was signed off work for six weeks but went back after four… and I’ll say here that work were brilliant, telling me to forget work and all the incomplete jobs I had on my desk, but to concentrate on getting better… when I went back on January 8th this year it took me half an hour to get to my desk such was the welcome I got from everyone when the realised I was back… all of them telling me to take it easy and to let them know if I needed a lift home at any time.
I was truly touched by the over whelming show of affection from everyone there, not just then but whilst I was off two friends visited with a pile of presents they’d bought me following a collection at the office… now apart from the fact that this had raised £250 or more and I had a pile of gifts bigger than I got at Christmas, we don’t do collections when people are ill at work, it doesn’t happen, a card will go around for everyone to write “get well soon” on, but no collections.
Yet a collection went around and I was stunned by the reaction… it seems my “grumpy old man in the corner” act needs some work… it clearly isn’t working.
I’ve also gotten hearing aids and can hear fine with them in, but sod all with them out… putting my “ears” in each morning is a novelty, and carrying a spare pack of little batteries is another… but it’s what I’ve been dealt and it’s the hand I have to play with.
The whole episode has changed the way I think about things, for a start it’s not a curable condition but a controllable one… when the final chemo session is done I’m to go onto tablets for the next two years, I’m going to be on the steroids for another nine months minimum and can’t give blood (something I’ve been doing since I was eighteen) until at least January 2021 and that’s before I knew about the post chemo drugs so that may be delayed even longer.
Some things that I’d been getting stressed over for no good reason I stopped doing and walked away from, not (hopefully) for good, but until I felt that I was in a better place… with my usual sense of timing one of those things I gave up changed for the better within a week of my stopping… but that’s a different story.
I’m trying to avoid the internet when it comes to medical matters, if I go there I read all sort of scary boIIocks that doesn’t help me in the slightest, such as the possible withdrawal issues from the steroids, or the side effects of the new forthcoming medication.
If you’re still reading then I thank you, it’s turned out to be something way bigger than I had expected it to be… but then a lot has happened… and with it all behind me I am certainly in a much better place than I was, but it would have been hard to get any lower.