13: Abandoning My Principles

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It’s a Thursday and I am three weeks into the cancer treatment.  The first week had been pretty uneventful, I felt a little nausea and there were some changes happening in my mouth and throat that I had not ordered but nothing that startling.

What I definitely have not ordered is what is happening to my sense of taste, to be frank, it appears to have fucked off never to be seen again.  What is the most disconcerting is the food that I find the worst is my own.  By this I mean that I am the principal cook in the Acheson-Crow household and do nearly all the cooking.  At age fourteen my daughter decided to become vegetarian and from then on very nearly all the food I've cooked has been vegetarian. I couldn’t be bothered with doing two lots of meals for the sake of a bit of meat.

To be fair, during the 90’s I was almost completely ‘brassic’ and at one point was existing on exactly £10 a week for food, which, even thirty years ago, was fairly drastic.  As a result, I learnt to do many things with vegetables and pulses which were the cheapest things I could buy. It was a fairly plain diet but by the time I met Helen I had shed such a large amount of weight that I could actually see my own toes which, I promise, was not a sight I had experienced for some years and pleased me mightily. The fact that I was in a new relationship and could now also see my own willy might account for our daughter turning up rather unexpectedly less than a year after Helen and I got together.

Fuck, I seem to have digressed somewhat, what the hell were we talking about, food obviously and my cooking. Ah, yes, I cook almost exclusively vegetarian food and due to the previously recorded exploding brain and diabetes I eschew the use of any sugar and have done so for at least 14 years. However, now my mouth had decided unilaterally that it no longer liked my cooking, it’s done this without any permission from me I might add.

This came to the fore during a meal with my daughter and her partner about one week or so into the treatment. They are renovating their house and had got to the point where cooking, although possible, was quite difficult.   Being good parents, we invited them over to partake of a meal, and since I am very nice, I had asked them whether they had any requests.  The request duly came back that they would like a Shepherd’s Pie.

Now, even though I say so myself, I do a blinding veggie Shepherd’s Pie, this involves many mushrooms, green lentils and various secret ingredients.  I have changed the topping from mashed potato to mashed celeriac and swede. This is to avoid as many simple carbohydrates as I can since they make my blood sugar get far too excited and climb to previously unknown dizzying heights.

Alright we have to address the elephant in the room, I can hear you thinking that this cottage pie sounds revolting. However, I can confirm that I have fed it unknowingly to dyed-in-the-wool carnivores and they have not realised that it was vegetarian, so there.  The secret is in making the gravy as rich as possible. It’s one of my favourite recipes. 

I followed my own recipe faithfully, well, at least, I did what I’d done before and made a gravy richer than Croesus using ingredients that I shall not divulge but it included some rather nice Reserve Ruby Port.

I made the mash with much butter, salt, pepper and topped with a generous layer of cheese and sprinkled with smoked paprika. When this came out of the oven, I saw everything that I had made and, behold, it was very good.

It was taken to the table and presented with great ceremony and, if I remember rightly, quite a large number of Brussel sprouts, a vegetable that I am inordinately fond of.

I had been gradually losing my sense of taste over the preceding days but this evening I could not get myself to choke down the Shepherd’s Pie, everything you were thinking about it, came true, for me at least. It tasted absolutely revolting, in the end I gave up and watched the others eating.  It was obviously not that revolting as between them my daughter and her partner managed to eat the whole lot and I had cooked enough for about ten people. They obviously loved it, as did Helen but unfortunately, I couldn’t even get a mouthful down.

By the Monday of the third week of treatment, I was eating extremely little as everything tasted vile.  Just thinking about eating was making me feel like vomiting.  Opening the fridge was a little too exciting as my sense of smell was now joining the party and I couldn’t stand the smell of the food in the fridge and it would make me retch. Oddly one of the worst smells was the water coming out of the tap.

I was still feeling fairly chipper on the Monday when Helen finally came into chemo with me, albeit I was absolutely starving. We had a discussion with the nurse about how to work out your true weight. The answer is that you must weigh yourself in the morning as soon as you get up. I was going to attempt this the next day and see how much I had lost. 

Helen watched with great interest as the nurse in the chemo ward soaked my hand in hot water and inserted the cannula. This hot water treatment is revolutionary, I hardly felt a thing. Because Helen was there and we could chat, the time went a great deal quicker than normal and we were engaged in an interesting conversation with the woman opposite who also had throat cancer and we were swapping war stories. Whilst we were talking, three new people entered the ward and came over to us and asked whether it was alright to have a chat, turns out that I had another appointment that I had forgotten about. 

Our new visitors were a speech and swallowing therapist, a dietician and one of the specialist cancer nurses. They were there to check up on how I was doing. As it turned out they weren’t especially happy. I was quizzed by the dietician as to what I was eating and when I confessed that I was hardly eating anything at all she became quite exercised. The outcome of this is she provided me with a bunch of meal replacement drinks that would be easier to swallow. 

Then it was the turn of the specialist cancer nurse 

“How bad is the pain at the moment, is it making it difficult to swallow?“

“It’s not really painful at the moment”

“Are you taking any painkillers?”

“I haven’t needed to as yet”

She said, quite bluntly, “You are going to need them, start with paracetamol every four hours, make sure you take them 2 hours before you eat. When they aren’t working then we will prescribe something stronger. You need to make sure you are on top of the pain so take the painkillers regularly.”

I agreed that I wouldn’t wait to take the painkillers and I would be a good boy.

“Can I have a look in your mouth”

I tipped my head back and said “Ahhhh” in the prescribed manner.

“Oh yes, you have ulceration starting at the side of your mouth. However, it all looks nice and clean”

Oh goody, ulcers.

“I can see that the skin on your neck is reddening, what moisturiser do you use?”

Now I have been very good with the old moisturising since they told us that it would be needed, back when I was first diagnosed. I make my own moisturising oil using inert fractionated coconut oil and some added essential oils for fragrance.  I have been assiduously slathering this on every day, and very nice it smells too. So, I proudly told her about my very sustainable homemade moisturiser.

“Oh my days, stop using that immediately” was the rather unexpected reply. “You are undergoing radiotherapy, it does the same as the sun and gives you sunburn, you are just making it worse. I’ll prescribe some oatmeal cream”

Well, I am the fucking idiot in this situation, even a modicum of common sense should have told me not to use oil with radiation. In the 70’s we used to cover ourselves with coconut oil precisely so we would burn more. Doh!

Shortly we headed down for the next dose of radiotherapy, and here is the nub of the food issue. Every day I have a dose of radical radiation which is having a catastrophic cumulative effect on my mouth and throat. Every single day another symptom reveals itself, and the next day another, and another, and another. The single most devastating symptom was my loss of taste and increased nausea now tipping over into actual vomiting.

It started with a bit of a loss of taste, then certain foods tasted strange, then completely ordinary food, such as butter and cream, started to taste bitter and I never know which one it will be. Then there were the smells that were starting to make me feel sick, the worst smell of all is the smell of our water.

This bears recounting, I’ve told you a bit about the radiation mask and my first radiotherapy and the barely restrained claustrophobia. Since I told you about that first treatment, I’ve gone through it another fourteen times and have another twenty to go. Each treatment will no doubt gift me with another shitty symptom to bitch about.

Every time I go into the radiotherapy room my heart rate increases and beforehand I have butterflies in my stomach. So, this is what happens, you wait until your name is called by a seemingly unending procession of attractive young people. By now I’ve become an old hand at this, I remove any jacket, my glasses and anything other than my long-sleeved tee shirt and leave them with Helen.  Follow the attractive young person into the radiotherapy room and all that is needed is to whip off the tee shirt and hop up onto the bed and shuffle around to get yourself positioned correctly. The attractive young person will then lower the mask over your face and inevitably ask you to move up the bed a bit. Deep breath and the mask is pinned to the bed and the radiographers spend a little time setting up and then with a cheery, “Back in a few minutes” disappear up the corridor, you hear their footsteps receding and then there is complete silence.  

Looking straight up through the mesh of the mask you can see directly into the radiation delivery mechanism, there is a square opening filled with green light. Then the machine rumbles into life. The square opening is formed by lead ‘fingers’ that then reform into a specific pattern that is calculated to deliver the radiation specifically for you.  The machine starts to rotate around your head. It does this once and then everything stops and there is deafening silence. The machine then comes back to life and starts to deliver the radiation and I immediately get a smell in my nose, apparently this is the radiation ionising the molecules of air in my nose. I can tell exactly when the radiation starts because of this. The machine rotates around your head and delivers the radiation in separate places. Rather disconcertingly as it goes overhead the whole thing begins to shake. Then it’s all over and all you have to do is wait to be set free.

This does not hurt in the slightest but for me it has had a rather unhappy consequence, our water smells exactly like the smell I get when the radiation is being delivered and after fifteen treatments the inevitable association is making me retch every time I run the water. Which is somewhat difficult as one of the latest symptoms is that my mouth is producing thick mucous like saliva and has become very dry so I have to constantly drink water, water which by it’s very smell makes me retch. Nice huh?

I was still feeling reasonably chipper when I went into radiotherapy an hour later. I was being treated by my favourite friendly radiographer and feeling OK about the whole mask situation. The treatment went quickly and when she came back in to take the mask off I took a fairly deep breath and asked her

“Would you be able to take a photo before you remove the mask”

“Of course, no problem”

I awkwardly fished my phone out of my pocket and held it up. “You might need to unlock it, use my thumb”

I felt my thumb being placed on the phone and then she moved out of my range of vision. She was quite thorough as you can see but eventually she finished and removed the mask and I climbed down from the bed.

“Thankyou for that”

“No problem at all”

I dressed and headed back out into the world with a bunch of photos now nestling happily in my phone.

Unfortunately that evening I wasn't able to eat anything and resorted to one of the meal replacement drinks.

You have no idea how disconcerting it is to find everything that your life is based on turned on its head. I’ve spent the last 14 years very focussed on the food I eat and the food I prepare for my family. It is a fundamental part of my identity, which had now abruptly been taken away. This started to have a bad effect on me and gradually I was becoming quite depressed.

By the Thursday I was barely able to eat anything and had several of the meal replacement drinks. I felt sick, unbelievably hungry and quite unreasonably depressed. I’ve been doing 10 hours work most days as well as the radiotherapy and with the lack of food I was feeling very tired. I started at 5 in the morning and was in video calls all day with another developer and by the time we left for radiotherapy I could barely speak let alone drive.  Helen drove us to the hospital and we used my brand new blue badge to park on the double yellow lines.

When we arrived I was assigned to the mythical H, I’d been on the other machines but never the H, and as usual the H had a delay of 25 minutes.

Oh hang on, you may have no idea what I’m talking about. As much as I would like to tell you off and send you back to the beginning to find out all about it, I won’t. The very first time that I entered the radiotherapy department the receptionist yelled out “There’s a 15 minute delay on the H” and I was somewhat taken aback and had no idea what she was talking about.  

So, each of the radiotherapy machines has a letter. I can tell you that my favourite machine is the C, for absolutely no reason at all.  Well maybe because that’s the one where my favourite radiographer generally works. In fact the other day, I was happy that I was on the C and that my favourite radiographer was on the job. They strapped me down on the table and left the room and then there was a long enough wait that I began to think something was wrong.

The radiographer’s disembodied voice came out of the ether, well out of a speaker anyway.

“We are having an issue with the computers not talking to each other, we will have them back online shortly”

I lay there staring at the ceiling hoping that this wouldn’t take too long. It took quite a while and the claustrophobia did begin to climb somewhat when the machine jerked into life, rotated round my head and then stopped for what I considered far too long a time before it rotated back, ground into life and proceeded to zap me with radiation.

Even so, for some unknown reason the C is still my favourite machine.

Back to the present and this was a review day and I had to go in and see a nurse about how I was getting on and of course when I went in she wasn’t terribly happy with me. 

“How have you been?”

“Not that good to be fair, I’m finding eating a real problem”

“Is it painful?”

“No not really, I’ve lost my sense of taste and I have some difficulty swallowing.”

She asked what I had eaten that day and I had to admit that I’d had a milky coffee in the morning, some fruit and a “Fortisip” that the dietician had given me but nothing else.

“You realise that if you don’t eat you are going to be admitted and they will put a feeding tube through your nose. You really don’t want that”

I mumbled something, feeling somewhat like a toddler that has been told off.

“If you can’t eat then you will have to drink the Fortisips and with your current intake you are going to need take at least 6 a day to keep up your energy”

Bloody hell, I can’t drink six of the fucking things a day, one maybe two but 6 is impossible.

It turns out that I have to abandon all my principles and start eating crap.  She suggested that the best course of action was to start eating ultra processed foods. They are very soft, hardly require chewing and slide down easily.  My prescribed treatment is to find the sloppiest ready meals I can, the blander the better and force them down my gullet whether I like them or not. 

We returned to the waiting room and shortly a radiographer came out and called my name. I followed him down the corridor and into the hallowed environs of the H.  Turns out it isn’t all that, and definitely not my favourite machine. The guys running the machine asked me whether I wanted them to talk to me while I was on my own. I said no I’ll be fine, which may have been a mistake.

It took the longest time of any of the machines I had been on with huge gaps of time between each operation. I don’t think I will grace it with my patronage again. 

On the way back we called into Sainsbury’s (other supermarkets are available) and I picked out a Mac and Cheese and a fish pie and we headed home.

I heated up the Mac and Cheese and to be honest it looked lovely, I stood at the kitchen counter staring at it.  I realised that Helen was standing next to me watching.

“I’m not going to try and eat this with you standing there watching me.”

Helen scooted off into the sitting room and it was just me and the fucking UPF. I poured a large glass of water, forgetting about the smell and gagging slightly.

I took a mouthful of the mac and cheese and sure enough it tasted absolutely vile, I washed it down with a swig of water and took another mouthful. I forced myself to eat all of it one teaspoon and one swig of water at a time. I did quite well until the last bit where I started to retch quite violently and decided that enough was enough and left the last spoonful in the bowl.

I joined Helen in the sitting room feeling distinctly queasy but somewhat fuller than previously. I guess that this will just become the routine for the next four weeks. This is not something that I am particularly looking forward to. 

The next morning brought another disconcerting side effect. I was on a video call with a colleague when I realised that I was dribbling. This is not something I normally do, well maybe when very drunk.  The side effect that was causing this side effect was an extremely dry mouth and the production of truly enormous amounts of mucous. Somehow or other as I talk this stuff leaks out of the corner of my mouth and I find myself constantly wiping it away. 

I know, I know, the two things appear to be mutually exclusive, how can you have a dry mouth and produce huge amounts of mucous. Well, frankly, I don’t know, but this is what is happening. My tongue also appears to becoming numb at the tip. Just another bizarre thing to add to the list.

Yet another radiotherapy appointment was quickly raising its ugly head, no doubt this time I will start crapping myself incontinently or find I’m growing a second tongue to replace the numb one. Can’t wait to find out. 

Well as it turns out I spoke too soon as I’ve already started crapping myself fairly catastrophically although not incontinently. This does prey on my mind a little, I am basically producing rusty water that squirts out at roughly the pressure of a fire hose. What, I ask you, happens if the sudden urge to crap occurs whilst I am strapped to the radiotherapy bed. The consequences would be unthinkable, not to say a tad embarrassing.  As if I haven’t enough to worry about with the bloody mask and the radiation sizzling the hairs in my nostrils.

The next radiotherapy appointment also included the very lovely weekly blood test.

I’ll let you into a secret, even though I could quite easily go in for radiotherapy sessions on my own I am extremely happy that Helen has insisted on accompanying me. It makes everything that much easier just knowing she’s there. I am, as I have told you before, an arrant coward and the heart rate rises and the blood pressure increases the minute I sit in the chair in the waiting room. This is roughly doubled when I have the prospect of someone I don’t know sticking needles in me. It helps take my mind off the incipient panic to talk about Location Location with Helen, or whatever happens to be showing on the Radiotherapy TV that afternoon.

When we arrived I was happy to find that I was on my favourite machine, the C and it only had a fifteen minute wait. The butterflies were doing their usual fandango in my stomach as I waited to be called for the blood test. 

I didn’t have long to wait when a bearded nurse called my name and I trudged off to be exsanguinated by the latest NHS vampire.

This experience was slightly worse than usual as he couldn’t find the vein, however this was ameliorated by the fact that he was extremely good at his job and I barely felt a thing. MInd you, I’ve got a fucking great bruise in my elbow. 

Hmm, I’ve just had a look and it’s barely visible and since this was only yesterday I may have to retract the previous statement. I have a very small and inconsequential bruise in my elbow, but I enjoy complaining so just consider this as my form of therapy.

A young man came through the farting double doors with his arms overflowing with what at first glance looked like shopping. He called my name and said:

“This is all for you, there’s even more inside”, 

I unloaded all the bags and took them over to Helen, it looked like they had prescribed enough Fortisips to feed me for most of the year.

In the radiotherapy room the radiographer inquired:

“Got anything nice planned for the weekend?”

“No radiotherapy for two days will do me” I smiled. “But nothing else, I’m too knackered”

“Fair enough” he replied.

I stripped off my top and hopped up onto the bed and another session of radiation poisoning began.

When it was over and I was getting dressed the radiographer told me that the rest of my “stuff” was on the right as I left. I went out and had a look and there was approximately another metric ton of Fortisips awaiting transport back to Butcombe.  Luckily I had the foresight to bring a backpack but even so it took a while for Helen and I to stagger back to the car laden down like pack donkeys.

Another week of treatment over, I’ve had 15 doses of radiation and three of chemotherapy. Only another 29 appointments to go and I may be able to claim my life back.