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So the cancer has been cut out of my throat, in the discharge meeting the nurse told us that they had removed not only the left tonsil but some of the tissue around it. She also told us that my tonsil bed looked horrific. I couldn't verify this as by the next morning I couldn't open my mouth wide enough to use an inhaler which was going to be an issue if I had an asthma attack. What?...I didn't mention that I also have asthma. I am basically a fucking wreck, if I was a dog they'd have put me down long ago.
When we got home from the hospital I laid out all the drugs that they had given me, I had paracetamol and oral morphine. No ibuprofen and worse, no codeine. This was somewhat of a problem, oral morphine has very little effect on neuropathic pain i.e. pain from damaged nerves. There were a number of nerves around my tonsil that were almost certainly quite upset if not actually damaged. The removal of the wisdom tooth on the left side had most definitely damaged the nerve as there was numbness around my lips and jaw. Fuck basically.
Now the preceding paragraph sounds like I know what I am talking about, I don't and in fact didn't find out about the issues with morphine until 12 days later when it was effectively too late. What I did find out however was that although I had a bottle of oral morphine, I did not have a fucking syringe, I did quite a bit of bad tempered swearing.
"How the actual fuck am I supposed to take exactly 10 milligrams of this fucking stuff"
Luckily Helen is a lot less sweary than me and somewhat more resourceful, "Don't worry, I'm sure we have a syringe in here somewhere"
Sure enough she found a syringe, I heaved a sigh of relief until I looked at it, the gradations had worn off the side and more ominously there was a picture of a dog.
"I can't use this it's the one we use on the dog", at this point I was becoming quite exercised about the whole situation. I was definitely going off the deep end and losing my temper completely.
However I told you that Helen is resourceful, instead of swearing and losing her temper with me which to be fair she had every right to do, no, she went upstairs and came back down with a childs calpol syringe. I calmed down, however I am certain I didn't apologise, which I do now, unreservedly. Basically I don't deserve her. I put the syringe in the box with the morphine. However I didn't really want to take the morphine, what had worked earlier in the hospital was paracetamol and codeine, which they hadn't given me.
However I also had a bad back some months earlier and had some codeine phosphate left. So of course I did what I presume I am not ever supposed to do, I self prescribed. I took two paracetamol and a single codeine, before retiring for the night.
I went straight to sleep, only to wake up at 1am hoping it was a bad dream, it wasn't, the bloody consultant wasn't wrong, it was painful, very, very painful. I flailed around in the bed and managed to find the light. OK this is it, bring out the big guns, I took 10mgs of oral morphine and lay in bed for approximately three more hours waiting to get drowsy and more importantly waiting for the pain to subside, it didn't. At 4 in the morning I took some paracetamol and eventually fell asleep.
I slept until about 6.30 when the alarm on my phone went off, I promptly switched it off and lay in bed contemplating life and the fact that my throat felt like someone had taken a rusty cheese grater to it and possibly more urgently, the fact that my bladder was quickly becoming the sole focus of my attention. If I didn't get up soon, I was going to piss myself.
As I hauled myself out of bed it was beginning to dawn on me that Christmas might be a bit of a stretch, Christmas Day was in six days time. I completed my morning ablutions and headed downstairs to face the day.
I had been given strict instructions that under no circumstances was I to drink or eat anything hot for several days after the surgery, however I was desparately in need of coffee. I can attest to the fact that luke warm coffee at 7 in the morning doesn't quite do the job. I made scrambled eggs with cheese and smoked salmon and took it into the sitting room to wait for it to cool down. I could have waited for the eggs to hatch for all the good it did me. Luke warm slightly congealed eggs are fairly easy to eat if not that appetising. That is, they are fairly easy to eat if they don't stick at the top of your throat and refuse to go down like a frightened punter on a bungee jump. The only way to get the sods to shift is drink a mouthful of luke warm coffee, well obviously not just coffee, any liquid will do but coffee is what I had. The eggs were abandoned fairly quickly and I sat morosely on the sofa feeling sorry for myself.
I had blithely told Ocean that I intended to work the day after the surgery, or at the very least attend the daily video call in the morning. Quite obviously, this was not going to happen, unfortunately, for the writing of humorous blogs, what followed was a great deal of not a lot.
Quick aside, I've spent an interesting 5 minutes trying to work out the spelling of 'humourous', now that doesn't look right, does it? However in the UK we spell 'humour' with an 'our' but not 'humourous', no we spell it 'humorous', what the actual fuck?
Where were we, ah yes, not much going on. I completely lost my appetite, by the Sunday, three days after surgery, I had eaten a few eggs and a bowl of soup and not much else. On the plus side had lost several kilos and was feeling quite remarkably svelte.
Helen had headed out to do some shopping and I was left at a loose end, there is only so much sitting on the sofa navel gazing that you can do. For some odd reason I was not reading and my entertainment was mostly confined to watching reels on my phone. This gets old very quickly and I was very happy when young Mark turned up to have a look at the new bike. I hadn't as much as started the beast since I had bought it the week before.
I very quickly arose from my bed of pain when Mark arrived and we hauled the rattling ruin out of the garage and contemplated it's loveliness.
It had to be started of course and much to my surprise it coughed into life on the second kick, this was more like it. It was but the work of a moment to convince Mark that he should take it round the block and tell me what it was like.
I was under strict instructions from my doctors not to do, well basically, anything whilst recovering, no exercise, don't run, no chance of that, don't play rugby. Really? that was the first thing that I was going to do. I am fairly sure that the list of things not to do would include riding elderly motorcycles.
So I quickly retrieved a helmet and some gloves and after a quick admonishment to remember that the gear change was on the wrong side I waved Mark away.
He disappeared down the road in a faint cloud of aromatic exhaust smoke and the distinctive noise of a old single cylinder motor faded into the distance. He was gone for quite some time before I heard the thud of the motor returning.
This was too much for me, I had to have a go so I donned the motorcycling garb and set off around the block before I had second thoughts. Now, I told myself as I set off, "Remember that the gears are on the wrong side", you may not realise but this means that the rear brake is also on the wrong side. Inevitably half way round I tried changing down using the back brake, luckily I wasn't going very fast as this made the old girl try to stop and go at the same time which was disconcerting to say the least. I made it safely back to the house and we quickly stowed it in the garage before Helen turned up and I got into trouble.
It was quite lucky in a way that they decided to do the surgery when they did, I would have been taking the week off for Christmas anyway so I wasn't losing too much money by not working. Not a great deal happened between the weekend and Christmas Day on the Wednesday, according to Helen I spent a great deal of time on the sofa looking quite unwell. Oddly I cannot remember much of this, I know I didn't eat much as nothing wanted to go down.
Christmas Day came and went in a blur, it was fun, but for me did not include dinner, if I remember rightly I had a piece of toast cut into soldiers before going over to Helen's sister's place for the afternoon.
I was intending to go back to work on the 27th but had found out that no one else would be working so I gratefully gave up all idea of working until the next week.
By the next Monday I was down to 72kg, 11 stone in old money, which is the lightest I've been for years, I was quite happy about this even though it was obvious that all the weight would immediately go back on as soon as I could eat again.
I had an appointment at the cancer clinic for New Years Eve where I would find out whether the operation had been successful and what was going to happen next.
Jo and Kev offered to take us to the hospital yet again, this is starting to get embarassing but it does make going to the hospital a great deal easier.
The clinic was bursting at the seams again when we turned up slightly early, Helen found a couple of seats while I gave my name, address and phone number to the receptionist. The NHS were still on fine form as we were called almost immediately by a nurse that I recognised from last time.
She lead us to a side room and asked us to sit down. The door to the room opened and it was the consultant that had done the surgery, the one who had helpfully told me that it was going to be very painful.
"You were absolutely right", I said, "It was bloody painful"
"Told you" smiled the consultant, "How painful is it now?"
"It's better than it was, mind you the morphine you gave me had very little effect"
"Oh yes, oral morphine has very little effect on neuropathic pain"
I did not reply, "Well why the bejiggery fuck did you give me it then?" but I definitely thought it.
"Well the good news is that the operation went very well, however because of the site of the cancer we weren't able to get very good margins. I can confirm that the primary site of the cancer was on the left side of your neck but has also metastasized into the left lymph node and you will require further chemo and radiotherapy. "
"I assumed as much" I replied, at this point the door to the room opened and two more people came in, a slim confident looking woman and a young male nurse.
The woman was introduced as the consultant oncologist who would be overseeing further treatment and the man was the senior nurse specialist on the cancer team.
The surgical consultant said goodbye and this time really did disappear out of my life, hopefully forever.
This is now going to get complicated, the very lovely oncology consultant did not pull any punches.
"There are a couple of options that you have, although the primary tumour seems to be confined to the left side of your neck the margins of the surgery were quite close"
"What does that mean, the tumours gone, right?"
"When a cancer is cut away we try to also remove a large margin of tissue around the tumour to ensure that it is all removed, because of where the tumour was the margins are quite close."
"OK so what are the options that you mentioned?"
"We could do a neck dissection and remove your lymph gland, however we have discussed it in the MDT meeting this morning and the concensus is that your cancer will be best served with a non surgical technique. Your PET-CT showed no cancer elsewhere so we are offering treatment with the intention of effecting a cure"
Well thank fuck for that. This all sounded like good news, so why did I sense a fairly massive 'but' lurking in the wings.
"I have to make you aware of the side effects of radical radiotherapy, particularly for head and neck cancer. On the plus side, you only have cancer on one side of your neck which should reduce the side effects somewhat"
"Oh good", no fucking clue so far and I was experiencing a certain amount of cognitive dissonance, the oncology consultant was slim, attractive and disgustingly healthy with a very lovely smile that she deployed while informing me about side effects.
"There are some side effects that are absolutely going to happen and we can't avoid them, the radiotherapy will give you a sore, dry mouth and thick saliva and you will experience difficulty swallowing."
Oh marvellous, just as I was hopefully getting over not being able to swallow it would start up all over again.
"During the treatment you will need to carry on eating as normally as possible, there is a possibility that you will lose your swallow and in that case you will have to be fed through a tube. There is a small risk that you will end up with a permanent feeding tube"
Being fed through a tube was not that unexpected, my brother in law had oesophageal cancer some years ago and had to be fed through a peg for quite some time. Hang on, come again, permanent feeding tube. Oh well look on the bright side it would solve my weight gain issues permanently.
"What do you do for work?"
"I'm a software developer, so I should be able to keep working most of the time", yep, as long as the fingers and eyes still work then I'm good to go though the effects of radiation on my brain could cause some issues.
"There will be some hair loss in the area of the treatment but the good news is you shouldn't lose your moustache"
Yippee, I might have a permanent feeding tube but I will keep my, frankly, completely unecessary facial adornment. She seemed very concerned about how I might feel about shaving off a moustache and beard that comes and goes with the seasons.
Then came the list of possible long term effects, this was not the stuff that was bound to happen but stuff that might happen and included..jaw stiffness, lymphodema, hypothyroidism, hearing loss, dental complications, more on that later, increased risk of stroke, ah there it is, I knew it would be in here somewhere, the old brain might explode again...our old friend osteoradionecrosis, braxial plexopathy...
Got to stop here, braxial plexopathy, what the actual fuck? Turns out this could make me even more of a duff than I currently am. Braxial plexopathy is a condition that causes numbness, tingling and weakness in the arm and hand, the braxial plexus is a group of nerves that run through the lower neck through the upper shoulder...secondary cancer and death.
That is quite the list, enough to be going on with I would say, but no, this was far from the complete list of utter shit that she had in store.
"I am recommending that you have weekly carboplatin chemotherapy, this will improve the chance of a cure by 4 to 5%, given your history we have to be careful with this"
I raised an enquiring eyebrow, I can do this I have fully ambidextrous eyebrows, quite useful for non verbal communication when I am somewhat stuck for words.
"It's very important that we manage your stroke risk factors, with your history of recurrent TIA's we need to make sure that the chemo can be stopped quickly. Normally the chemo would be over a three week cycle but if there are issues I want to be able to stop it straight away. If you have any signs of an infection, a TIA or your temperature goes above 38 degrees you must contact us immediately, that means day or night, you'll have an emergency phone number."
No shit Sherlock, if I have a TIA I was intending to keep it to myself. For those of you who may not be cognisant of my multifarious health conditions, a TIA is a mini stroke, since I had roughly thirty or so some years ago I am fairly certain that a recurrence would cause me a certain amount of mild concern.
Mind you the increase in temperature is not something I would have considered, whilst writing this, it occurred to me that it might be a good idea to purchase something slightly more effective than the old thermometer that needs to be held up to the light and turned in order to read the temperature. I broke off from writing and bought one of those whizzy ear thermometers that they use in the hospital. I don't fancy lying in bed already feeling like warmed over faeces and trying to take my temperature with the old mercury job.
The stream of absolutely horrific side effects had not yet dried up, we've gone through the side effects of the radiotherapy but there are other equally marvellous ones from the chemotherapy.
So the side effects of the chemo include but are not exclusively limited to...nausea, vomiting, peripheral neuropathy...what the fuck, maybe I should just start using WTF but it wouldn't make me laugh so much, therefore you will just have to put up with the full fat version. I'm getting good at this, I reckon that peripheral neuropathy must mean nerve pain in your peripheries, yep, just looked it up that is exactly what it is, it fucks up your feet and hands, I'm just hoping my willy is not a periphery...hearing impairment, tinnitus, renal damage, blood clots and most importantly bone marrow suppression.
Fuck me sideways, if all that happens I will end up vomiting, deaf, toeless, fingerless, pissing clotted blood whilst suffering numerous unameable infections. I know they have to give you all the facts but this is all getting slightly too much.
"You may want to go away and think this all through as you will need to give your consent to the treatment before I set everything in motion"
"Nope, I've already made up my mind, I'll sign it now and we can get on with it"
The oncologist looked quite happy about this and passed me the form where I signed my life away in triplicate.
To use a modern phrase I know that some of you will find the preceding somewhat triggering and would question why I would sign up to something with so many downsides. What I had just been told was the absolute worst that could happen, I've had multiple surgeries over the years and the side effects were all nearly as bad including a danger of death. If I had stage 4 cancer and was terminal then that would have been a kettle of very different fish. I would have had to consider very carefully how I wanted to precede. This isn't treatment to keep me comfortable, this is in order to cure the cancer, more importantly it has been used to cure the same cancer in many other people, one of whom is my own brother in law.
There are a million websites out there that give advice on cancer, diet advice, drug advice, statistics on research, pernicious wellness influencers giving out spurious cures. Some of this may, I say may, advisedly, have some validity but before you tell me how drinking my own urine and covering myself in yoghurt made from the lactations of himalayan mountain yaks will cure me, please point me at a double blind trial that has been properly peer reviewed, if you can't then all I can politely say is maybe go away and check your facts. Helen just told me I'm not allowed to tell you to fuck off.
I will stop my grumpy old man polemic here and return to the hospital, the oncologist left us in the care of the nurse specialist who went through a bunch of practical things that I would need to know. Before she left the oncologist had said the words that sent a finger of cold down my back
"I need you to see the dentist for a checkup before you go"
Arrrgh, what is it with the fucking dentists, they've already removed two teeth what now? All to no avail as shortly I found myself reclining in the dentist chair whilst she counted my rapidly diminishing set of choppers. Whilst we were talking I luckily told her that I was scared witless of the dentist and had researched dentists for scared patients and I had chosen my current dentist because he offered sedation.
As soon as she had finished her examination I was requested to join her looking at the, frankly, unpleasant x-ray of my teeth, and here it was, our old friend osteoradionecrosis, the film version would be called Death of A Jawbone, it's absolutely fucking inevitable.
"We want to minimise the chance of osteoradionecrosis. You have three options, we can do nothing as you have already had the two wisdom teeth removed, if you want to be completely safe then we would remove all these teeth on the left hand side, or we can remove these two teeth that have root canal fillings"
"What would you recommend?", however, the little voice at the back of my head was gibbering incontinently "She's going to remove them all, you'll look like a character actor on Deliverance"
"I think that removing all these teeth would be too much, I would recommend removing the two with the root canal's as they are the most likely to get infected in future"
I breathed a very small sigh of relief, "That's what I was thinking"
"Normally we would schedule the surgery for later this week"
Oh fuck!
"But since you need sedation we will need to work out when we can do it and if we have enough time before the radiotherapy begins"
Well this is marvellous, I will only have them extracted under sedation and if I don't have them extracted because there isn't enough time and then I get the old osteoradionecrosis then it will be my fault for being a complete wuss, way to go.
"We will be in touch once we have worked out what we need to do"
With this final bombshell we were unceremoniously booted out into the street to find our way home.
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