14: Well, you can live on it, but it tastes like shit
It’s the end of week 5 of chemo and radiotherapy. Not much has happened of note. My life has distilled down to 4 distinct things, work, radiotherapy, a soupcon of television and sleep. This does not make for very scintillating blog writing.
To pick up from where we left off, Helen and I had staggered to the car overburdened with Fortisips and returned to Butcombe like medically challenged Father Christmases, laden with gifts that no bugger in his right mind would want.
We had many people round for a meal on the Saturday night and I cooked a tofu and mushroom curry with coconut cream. I supplemented this with Mediterranean Rice and Lentils as the amount of people coming kept exponentially increasing until I lost count. There was a certain amount of uncertainty on my part as I couldn’t taste the curry and had to rely on other people to taste it and tell me whether it was OK. I on the other hand was reprising Paul Hogan in Crocodile Dundee “Well you can live on it, but It tastes like shit” and indeed that is pretty much what it tasted like, which doesn’t help a budding chef much at all.
Our daughter and her partner turned up and made salad, my niece arrived and produced pakoras and bhajis and made a fennel coleslaw. It obviously didn’t have just fennel in it but for the life of me I can’t remember what else she bought with her.
I got into the swing of things and extracted the whole chillis that had been in the curry and turned them into savoury chilli jam. I asked Helen to try it but warned her it might be a bit hot, she dipped a finger in and licked it, this apparently robbed her of the ability to speak for a good five minutes so I concluded that, yes,maybe it was a tad on the warm side.
Once all these comestibles were arrayed on the table it looked like a veritable feast to which I added some freshly made sourdough. It looked good enough to eat, not surprisingly. However it was not to be, I couldn’t stomach any of it so I heated up another revolting ready meal and ate a bit of it and then returned to the table with a lovely Fortisip to wash it down.
Eating has become a spectator sport for me at the moment and in order to amuse myself I persuaded our daughter's partner, Alberto, to try the chilli jam, which he did, quite willingly I might add. This had some quite spectacular results, he turned red and the top of his head began unscrewing. Well maybe not quite but the chilli jam was obviously somewhat lava like as he began to sweat uncontrollably. I always like it when my cooking is appreciated. Later on when we were washing up after the meal I told my daughter to take the remains of the curry to have the next day. I asked Alberto whether he would like the chilli jam.
“Are you sure?”
“Yep, I can’t eat anything hot right now and Helen certainly isn’t going to eat it”, I smiled.
Alberto went to scrape all the chilli jam into the tupperware container that had the curry in it, a tactic that I personally thought might be fraught with danger.
“Do you really want to do that?” I asked, “Maybe put it in another container?”
I retrieved a small tupperware from the cupboard and Alberto proceeded to fill it with chilli jam and then did something quite brave, he put the last bit on the spoon straight in his mouth. Nothing happened for a few seconds and then steam began to escape from his ears and he went a fairly interesting shade of purple and made a leap for the cold water tap. Some people have no care for their own self preservation It made the rest of us laugh like drains, mind.
During the day I had a phone call from one of my mates, every time he’s called he has told us he is available for lifts and to give him a shout if needed. Helen jumped at this opportunity as Monday was another dance lesson, so we had organised with Paul to take me into the hospital on Monday for a review with the oncology consultant, chemo and radiotherapy.
This was giving Paul a certain amount of trepidation due to his sieve like memory, well he does have to take a very frail and needy cancer patient to the hospital and if he fucks up then obviously the cancer patient is going to immediately expire.
To this end he put an alarm on his phone, told his partner to remind him, and for good measure his kids as well and finally got me to call him to ensure he remembered.
As usual for a chemo Monday I started work at 5am to get in as many hours as I could before setting off for the torture chamber. This Monday included a review with the oncologist so we had to get there even earlier than usual.
In a remarkable turn around of previous form, Paul turned up bright and early on Monday morning ready to take me to the hospital. Since it was a review day and there was a significant amount of time between the review and the chemo I had suggested that after the review we go and ogle motorcycles in Fowlers to which Paul readily agreed. This entailed a certain amount of anxiousness on my part as to the correct sartorial elegance to display to the world.
My preferred uniform for visiting the oncologist is jeans, black long sleeve tee shirt, tweed waistcoat and tweed jacket. Harris Tweed I’ll have you know, pure wool and all that shit.
However a tweed jacket in Fowlers Motorcycles may draw a certain amount of disapprobation from the assembled motorcycling fraternity and to not to put too fine a point on it I shall be called a lady garden. This had to be avoided at all costs, I have my reputation to keep up after all.
However, every time I have visited the oncologist she has commented that I am, and I quote “Impeccably dressed”. This is a conundrum, how to maintain my perfect score with the oncologist and not be called a lady’s nether regions by the hairy arsed denizens of Fowlers Motorcycle Emporium.
We arrived at the hospital in plenty of time and sat waiting to be called. The first call is by a nurse who sticks you on a weighing scale and checks you haven’t lost too much weight. This is a bit of a hit and miss affair as jeans and boots add a couple of kilos but I guessed that I would be around the 74 - 75 kg mark given that I was weighing myself at 72 - 73kg with nothing on. I was duly called and indeed I was bang on the money, 74.9 kg.
Soon after this I was called in to see the oncologist and dragged Paul along with me much to his alarm.
“Who is this?” was the oncologists first question, gesturing to Paul.
So obviously I replied “I have no clue, I’ve never seen him before, I thought he was with you”
“Take no notice of him, I’m a friend, I brought him today instead of Helen” said Paul hastily.
The oncologist then proceeded to give me the third degree about what I was eating, how many times I took a shit and what pain killers I was taking.
The answers in that order were,
“Um…porridge and the occasional ready meal, about once a day and none”
“Do you have any constipation?”
“No, the reverse if anything, fairly catastrophic diarrhoea, but only once or twice a day so no more than usual”
“Why aren’t you taking any pain killers?”
I would have thought that with a modicum of cogitation this would have been obvious even to a fairly small child.
“Because I don’t really have any pain”
“Do you have any pain at all?”
“Well, yes but not enough to worry about”
“Have you been given any suggestions for pain management?”
“Yes, I was told that I needed to start on paracetamol and when that was no longer doing the job they would prescribe something stronger until I was eventually on morphine”
“The pain is going to get a lot worse, I always advise that you skip an increasing dose and go straight to morphine, we need to keep you eating. I’ll prescribe some and you can pick it up in your review on Thursday. You don’t need to use it straight away but it would be best if you had it available”
There were a lot of questions about eating, well to be fair, a lot of questions about me not eating and I was fairly roundly told off, yet again.
“You are definitely not as smiley as you were in our last appointments” was one slightly pointed remark from the oncologist
“No shit Sherlock, this is not exactly a walk in the park, I can’t taste anything, I have difficulty swallowing, my mouth is full of ulcers and every fucking week you pump me full of poison and then bombard me with radiation, I’m having the time of my fucking life.”... is not what I said but it did pass through my mind.
However all was redeemed when we left and she said…”Impeccably dressed, as usual”
Yes, knocked it out of the park, yet again. I’m not irredeemably shallow, honest.
Having at least three hours to spare, Paul and I headed for the Mecca of Motorcycles that is Fowlers of Bristol.
I won’t bore you with each and every bike we looked at, salivated over or scorned as you might lose the will to live and head off to Switzerland. One incident bears recounting however. Fowlers has a rather marvellous cafe that sells all day breakfasts, baps and cups of tea for the ever hungry stream of overweight middle aged men that make up 99% of its clientele. Paul and I headed for the cafe as it being the middle of the day I needed to eat something. I wasn’t terribly optimistic that there would be anything I could eat, an all day breakfast was completely out of the question.
At the counter I asked whether I could have just beans and two eggs.
A larger lady behind the counter heard this and immediately butted in and said aggressively
“We’re not allowed to do that, you ‘ave to order at least six things”
A certain amount of to’ing and fro’ing then ensued as we tried to make the order up to six things which was impossible as I couldn’t eat any of them and Paul was doing a fast so wasn’t eating anything at all.
“Don’t worry”, I said to the girl behind the counter, “I’ll pay the full price for the beans and egg” and as an aside to Paul, “I probably won’t be able to eat it anyway”
“Are you have problems with eating?” asked the girl rather nicely.
At this point the larger, rather aggressive lady came over and Paul immediately said, loudly, so that she could hear.
“Yes, he’s got throat cancer and can’t eat properly”
With that we picked up our tray, leaving the larger lady opening and closing her mouth like a surprised goldfish, and retreated to our table.
I managed to eat all the beans and egg even though the beans tasted like wallpaper paste. We looked at a few more bikes, had a perusal of the clothing department and then set off for the hospital once more.
The rest of the day was fairly boring, at the chemo ward I was directed to Area 61 which sounded exciting but turned out to be the teenagers ward and was slightly nicer than my usual ward. Other than that it was another day at the hospital, chemo, radiotherapy and then home to try to eat tea, hour or so of telly, bed…rinse and repeat.
The side effects of the radiation continued to ramp up day after day, swallowing became incrementally more difficult and eating the revolting ready meals even more of a chore. Oddly however the pain had not yet kicked in to any great degree, which was good as they kept forgetting to give me the morphine and to be fair I kept forgetting to ask for it.
On the weekend, half the entire family were turning up for dinner so I decided to go all out and cook a Mile High Vegetable pie. This does not sound much of a feat but it is a multi layered pie that takes about four hours to assemble and another hour or so to cook so no small undertaking. I also decided to make ginger thin biscuits as one of the radiographers had suggested they were good for nausea.
Helen went out and I started an entire day of baking, in hindsight this was a fairly monumentally stupid thing to attempt in the middle of cancer treatment but hey ho.
The biscuits took quite a while to make and made a fairly extravagant mess of the kitchen, however they did come out beautifully. I flopped down on the sofa to have a rest before attempting the pie. Any small exercise now leaves me completely knackered.
Helen had gone out to get the ingredients for the pie which were many and multifarious and each layer of the pie had to be created and then put to one side whilst the next one was made.
This was going reasonably well until I had to add an egg to something in the stand mixer, can’t remember what but the egg didn’t go into the mixer, it went all down the side of the kitchen cabinet. By now I was getting fairly tired and this incident just flipped me over the edge and I lost my temper entirely and threw the eggshell violently across the kitchen and then kicked a pan that was on the floor. Neither of these things did anything to make me feel less annoyed and now I had to not only clean the egg from the door and floor but everywhere else that it had spattered when I flung the shell which added more fuel to the fire of my already frayed temper.
At this point Helen returned with the rest of the ingredients, immediately took the temperature of the room and retreated to the greenhouse to stay out of my way whilst I stomped around the kitchen swearing to myself.
By the time Helen came back in, the kitchen looked like the aftermath of a fairly vigorous war and I was completely spent and still in a foul mood. I had however produced an entirely enormous Mile High Vegetable Pie that looked pretty fantastic even though I do say it myself. I had not really enjoyed making it as everything smelt off and I couldn’t taste anything to check whether it was OK but suffice it to say that this particular pie had at least a dozen eggs, three quarters of a block of butter and most of a block of cheese incorporated in it so with a fair wind it should be alright.
Helen tackled the monstrous pile of washing up and put roast potatoes on whilst I lay on the sofa fervidly wishing I was dead. I was too tired to move when Ocean and Alberto arrived and they soon made short work of making gravy and putting on some extra veg.
The pie looked amazing, but when I tried it, it tasted absolutely disgusting so I heated up another sickly ready meal for myself, ate about 4 spoonfuls and resigned myself to yet another Fortisip in lieu of eating. As far as every one else was concerned however the pie was a triumph. Bloody annoying.
The next day my niece was taking me in for chemo, no review this time. We were sitting in the chemo ward chatting when she said
“Char, your beard is all over your top”
Sure enough, I looked down and my top was covered in beard hair, my beard, such as it was, was being irradiated off my chin. When I got back home after the radiotherapy I inspected my chin and resigned myself to shaving it off.
This was followed a few days later by the moustache becoming distinctly lop sided in favour of the un-radiated side. More resignation and I had more trimming to do. I am looking more like my father by the hour. As the week wore on I became increasingly nauseous and was vomiting most mornings.
During the review with the nurse on the Thursday, she asked me what I was using on my neck and I was able to confirm that I was being a good boy and using the moisturizer that they had given me.
“Looking at your neck, it may crack and develop a wet wound. I’ll get you some gel. How are you dealing with pain at the moment”
“I still don’t really have much pain in my mouth certainly not enough to require more painkillers”
“What are you using?”
“Paracetamol and the occasional co-codamol but that is mainly for the pain in my shoulder which is caused by a trapped nerve in my back”
Over the days before the review my arm had become increasingly painful and by the end of the day it was stopping me sleeping, hence the co-codamol, but as far as the mouth and throat was concerned it was still pretty OK.
“Have you been feeling sick”
“Yeah pretty much all the time, I’ve vomited most days as well”
“Did you ring the emergency number”
“Er…no”
“Why not?”
“Well I was only being sick in the mornings and it didn’t seem that bad”
She gave me a look that said, You are a complete idiot but stopped from coming right out and saying it.
“Can I have a look in your mouth”
I obediently opened my mouth and went “Aaaah” in the prescribed manner
“Hmm, do you mind if I take a swab of your tongue”
Now this might be a bit of an issue, I was already feeling sick and I have a rather exaggerated gag reflex.
She got the swab out of its packet and I was relieved to see that it was very small. I opened my mouth and she began to swab my tongue. I thought all was going to be alright when she went a tad too near the back and I started to gag. I must have gone pretty white as she very rapidly produced a cardboard sick bowl and passed it to me. I sat with it on my lap determined not to vomit. After a minute or two the urge to be sick subsided somewhat
“Are you taking the anti-sickness pills?”
I answered that I had taken one before coming to the hospital and I took them regularly each day but they weren’t having much effect.
“I’ll get them to prescribe something stronger, it’s called Ondansetron and it slows down your digestive system, I’ll go and get it now”
She left the room and before long came back with a number of small cardboard boxes.
“Take one of these now and it should start to make you feel less sick, the next thing is, do you have enough morphine? I see that it has been prescribed”
“Yes, it was prescribed last week but I haven’t actually been given it yet”
“You can go back out and wait for the radiotherapy, I’ll go and get the gel for your neck and some morphine”
By the time the weekend came, I had started on the morphine as the pain in my throat and the difficulty with swallowing had both increased exponentially. Each day I would work all day until around three o’clock and then set out for the hospital and my appointment with the evil radiotherapy machine, and every evening I would come back unable to do much but lie on the sofa and doze. Eating was all but impossible and I had to start taking the morphine so I had some on board when I tried eating.
The weekend went by in a bit of a haze, people came and went and I sat on the sofa watching sort of vaguely. There were two more weeks of treatment to go, all I had to do was get through them, or so I thought.
My sister Catherine had volunteered to take me to my last chemo on Monday and picked me up at midday. I was not feeling the best and when I got out of the car at the hospital I had a dizzy spell that made me hold onto the car for support. I had weighed myself that morning and I was down to 70kg or 11 stone in old money. I started this hideous rollercoaster a rather tubby 77kg. I’d lost three kilos in the last week alone. Nearly every day of the week had started with a rather startling bout of vomiting which didn’t help with the eating issues one bit.
Once more we were directed to the mythical Area 61 and a young nurse with a lilting Irish accent directed me to sit in the first cubicle. The first thing she did was weigh me and frowned slightly at the result.
“You’ve lost quite a bit of weight since you were last in here, how have you been feeling this week”
“I’ve vomited most days. Generally, only the once, not all day long.”
“Are you feeling sick now?”
“Yeah, a bit, I had a dizzy spell when I got out of the car downstairs”
“Have you been taking any anti-sickness medication?”
“Yeah they gave me ondansetron last week that helped somewhat, I didn’t take any this morning as they told me not to”
“Oh good, we give you ondansetron before the chemo”
By now she looked even more concerned and after looking through my notes, said. “I’m going to have to talk to the doctors before we start the chemo”
She disappeared and I said to Cath, “They have to calculate the dose of chemo based on my weight and if I’ve lost a lot it’s probably no longer correct”
The nurse returned and said, “One of the doctors is going to come and see you before we do any treatment. Would it be OK if I took your blood pressure”
“No probs, go ahead”
I proffered my arm and she attached the blood pressure cuff and stuck the oximiser on the end of my finger. The machine beeped and tightened around my arm and I could tell that it wasn’t that high due to the amount of time it took. I leaned over and had a look at the reading 92\62, bloody hell, it’s never been that low in my entire life.
“We can’t start the chemo right now as we would need to recalculate the dose, right now we would be overdosing you and you will feel even sicker. The doctor will be along to see you shortly”
A very nice doctor arrived to see me, I recognised him from a couple of weeks before when he had changed my sickness medication”
“Do you mind if I sit down”, without waiting for an answer he drew up a chair and sat down with us
“I’ve just been discussing your case with your consultant oncologist who luckily was in the same ward as me when the nurse came up to get me”
“We have decided that it would be a bad idea for you to have this last lot of chemo. You’ve obviously been quite unwell and your kidney function would indicate that you are quite dehydrated.”
I nodded and tried to look intelligent, inside I was doing the high five, no chemo, no cannula, yippee result.
“We think it would be a good idea for you to have a saline drip for a couple of hours if you are agreeable”
Bollocks, no escaping the cannula, still no chemo, less vomiting, it’s got to be a result, right?
“No problem” I sighed resignedly and proffered my arm to the waiting nurse who sprang into action with the cannula. I sat for the next couple of hours whilst salty water dripped slowly into my veins, feeling an immense sense of relief at the thought of less nausea.
The rest of the week oozed by in a haze of radiotherapy and hunger and I appear to have absolutely no memory of the weekend whatsoever. I do remember that Paul rang up and offered to take me into the hospital again on Monday, this time there would be no chemo as that had now finished.
It’s now Saturday and I have been sitting here all day writing this unashamed bilge. This has been my second to last week of treatment and the torture has been properly refined this week.
It started with my neck deciding it was time to get in on the act and beginning to peel and weep rather profusely.
My diet seems to have distilled down to three things, milk, Weetabix and Fortisips. I have to take morphine before each meal as everything is hurting my mouth and throat now. Anything with either sugar or salt in it just …hurts. I forced myself to have some chicken soup earlier in the week and even without the chemo the whole lot came back up again when I was brushing my teeth. One second I was there happily brushing my teeth and the next I was contemplating a sink full of chicken soup and curdled milk, not the most pleasant way to end the day I can tell you.
One small high point was the review with the nurse on Thursday. I had actually put some weight back on so she finally had something to be happy about. Although she did at the same time give me some rather distressing news.
Next week is the last week of my treatment. According to everyone I have spoken with, the effects of the radiotherapy will continue to get worse for two weeks after the end of the treatment. I’ve always known this, they told me this at the very beginning. So I have been braced for this. But it has slowly occurred to me, like the duff that I am, that I am likely to carry on needing the Fortisips for some time longer. I asked the nurse how long I was likely to need the Fortisips after the end of the treatment.
“At least four weeks”
So, gentle reader, my last week of treatment is next week, but the shit show is going to go on for at least another 5 weeks from today.
Another five weeks, I may be dead of malnutrition or boredom by then.
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