Since the last treatment

Almost a week on, and I can't really write tomorrow, so figured I'd do this today!

So it's been a little while now, and I've seen some real improvements in my digestive tract. Day-by-day it's been getting better, from really struggling during my holidays last week (mostly spent playing my PS4, forcing down porridge, and then working out before forcing down some soup) to it being almost fine today.

Towards the tail end of last week, my tongue, I realised, had gotten quite swollen up which made eating quite interesting! It never struck me that when you eat you move your mouth in a set way, which meant that this one area was consistently clipped by my teeth :( - very painful by the end. But, with a steady flow of painkillers, rest and time, everything's receded.

On Saturday, I went out for a meal with my parents and, on Sunday, I had food round my friends and found that eating became gradually easier. Today, I felt like I was beginning to some of the drugs for no real reason and could actually ENJOY FOOD AGAIN, which was lovely.

And, more than anything now, my HAIR IS GROWING BACK. I now look like I've shaved my head by choice rather than to try to pass as a normal person. Oh dear, oh dear. But, at least, a sign of improvement like I'm not all cancery and chemotherapy-like anymore :)

Here's a pic! Ignore the sadface - it was the only one that was vaguely acceptable for the net lol... Write soon :)

The one when it was all over

Oh my. I don't know where to begin.

People have asked me lots how I'm feeling. Pleased? Elated? Relieved?

No. None of those really. The closest I can come is sanguine. I've lived with this for what seems like an age now, so I didn't feel too much at all. Today, come 4pm, I did think "oh, it's nice that I'm not in hospital", but it's just felt like another day (albeit a day I'm off work)

My mask - now at home

I feel tired and my dysphagia (difficulty swallowing) continues, which might be another reason why this is still feels like it's an ongoing concern. I woke up at 11 today (surprisingly not in too much pain) and pottered around. Eating is the main problem currently; my tongue feels a bit swollen and has some nasty irritated/sore bits adorning it at the edges, right where the teeth normally are just out of contact with it at the back. Eating is thusly an exercise in how much niggly pain I can tolerate before I give up: I managed a whole bowl of porridge, but couldn't eat my dinner and instead had to supplement with a tin of fruit and custard. Gourmet dining it was not.

Once my palate returns and my food is enjoyable again (it's actually so sad not enjoying eating, despite the positive affect on my figure post chemo weight gain... damn chocolate bars) I think I'll truly feel like something has happened, and life will become something I can enjoy a bit again. Maybe I'll feel like I can write something profound (the crowning glory that this blog deserves?) at some point soon. 

But, for now, all I'm going to do is rest up and will my digestive tract to sort it's life out. Just as I've been waiting for my body to do the same. I'm off until Monday, so hopefully there'll be a tangible improvement day-by-day. After all, today and tomorrow are simply like having another weekend off - it'll only be on Friday when it will have been 3 days since a rads sesh that maybe things will ameliorate.

Write soon - once I'm feeling a bit better.

T

The night before the end

Just dawned on me that it's the last time I'll go to sleep with a cancer treatment coming the next day. Fairly momentous.

I can't believe I get to take my mask home tomorrow.

I just want to get this done for now. I'll pause and reflect on what I can tomorrow... It's a lot to take in.

Liquid life

Almost the end of treatment now! After today's radiotherapy it'll be 13/15 "fractions" of rads done - only Monday and Tuesday to go. I also have taken Wed 'til Fri of next week off to recuperate.

Hopefully by then I'll be able to start eating again. I've almost completely stopped eating solid food now (the insides of my gums are very sore now, so eating anything salty is akin to salting a wound.... horrendous), instead relying on these nutrition drinks for, basically, everything.

As you can see, there's a few flavours - I think I have vanilla, chocolate, cappucino and the 'fruit of the forest'. I don't really like the latter one - tastes like thick blackcurrant milk, almost. Blurgh! However, the others don't taste too bad; just like milkshake. They're basically drinks packed with calories, vits and all the other bits and pieces one needs for staying nourished; I might have to move to drinking 4-5 a day and  totally replace eating early next week.

The painkillers I have been using are strong, as I said before. They've been so good in numbing the intense pain that was brewing at the start of the week, but it must be said that I feel like I'm living a weird existence due to how strong they are, trapped inside my own little bubble of cotton wool. There's also a set regime now to using them daily. All of this I'd like to write down so I remember this later on in my life.

In the morning, I'll wake up in quite intense pain - it kind of feels like knives in my throat (or, as I prefer to say although most people won't get the reference, like my throat has transmogrified into the sarlacc). I'll get up and do my artificial spit swishing, whilst dissolving an effervescent painkiller in some blackcurrant cordial and water. After swishing I'll (very slowly) drink down the painkiller. Every sip is fairly agonising, and I normally have to stop for a couple of minutes midway to let the pain go away - this morning I gagged a bit and started to cry (not blubbering sadness, just involuntarily from the pain in my throat). Upon finishing the cocodamol, I'll then start to disperse the aspirin in the Mucilage mixture whilst I get my things ready to leave. Finally, I'll try to gulp down the Mucilage in two gulps before leaving, slowly drinking one of the protein shakes as I walk down to the DLR.

By the time I reach work (having chewed gum on the tube in to get the saliva going) my mouth feels a bit more numb. I'll drink some coffee (with cold water mixed in to get it to lukewarm temp) and continue to chew gum. By 11/12, I'll be hungry, but won't be able to eat until the 1, when it'll have been 5 hours since my last cocodamol / Mucilage combo and I'll be able to mix it again. I do, and after I've downed it I will run out to see if I can get anything I can process for lunch. I can just about 'eat' soup, and slippery things like raw fish (I've picked up some salmon sashimi (raw salmon, Japanese style)) the last few days, but a things have to be timed for my painkillers to kick in, which is a weird experience.

I'll walk to radiotherapy about 3:30, getting there for 4. I'll lie motionless, lost in my own thoughts, as the machine deposits its radiation in my cells. I get the tube home, very hungry now, and have a nutrient shake to supplement me (and stop me feeling faint). By 6:30-7, it's time for another cocodamol / Mucilage combo (after another swish with the artificial spit), and a quick race to force down anything I can - a really soft roll smeared ('fortified', as the NHS literature puts it) with cream cheese dipped in tomato soup is all I can manage, until my gums start complaining (despite the numbing effect of the pain killers - revealing how much is actually being blocked out) and I chuck away the soup in favour of a few scoops of froyo.

Before bed, I'll swish again and, at the last possible moment (probably about 11:30, when I'll be in a fair bit of pain because the painkillers will have worn off and my digestive juices will be irritating my gullet a bit) I'll mix a cocodamol and drink it before sleeping... the painkiller will help me fall into a sleep. It's never dreamless; I'll dream of lots of things; having hair, smoking, people who cared for me; foreign lands; happiness. I'll wake up in pain and go to the toilet twice a night, and force some water down my aching throat; the painkillers only dull so much.

I'll wake up each day in quite intense pain; but it'll be another day closer to the end of treatment and the resumption of normal life.

Tom

More pills

Sadly, it's now gotten incredibly uncomfortable to swallow if I am without any painkillers. By uncomfortable, I mean that unaided swallowing is almost cryingly painful. I thought it was bad on Sunday night/Monday morning, but last night was just terrible; I kept waking up in dire pain in my throat, all dried out and with swallowing incurring a wince and a yelp pre and post completion.

So, I'm on cocodemol which, as every medicine cabinet afficionado knows, is a rather strong painkiller - codeine mixed with your old pal parecetmol. They're in effervescent tab form so I can swallow them - here they are:

I've just downed a couple and am pleased - they seem to be incredibly effective... I almost felt the pain ebbing away by the minute.

Let's hope this holds! 

Today was radiotherapy 10/15. Tomorrow is the last Wed ever of cancer treatment - today was the last day where there was at least another week to go of treatment.

We inch ever closer to the end...

more artificial spit

So my week went okay - I'm in the majority of my radiation fractions now (I've had 8/15!) the week is over.

On Tuesday I started to have trouble getting food past my gullet, which slowly kind of got worse until today, where eating is become a mite difficult. The problem is that, although the artificial spit I posted about on Monday has done some sort of a job, it's dried out below that and, now, it's tough to swallow it at all. Soup diet for a while, methinks... trim for summer at least!

Anyway, I told this doctor this on Thursday and got prescribed yet more artificial lubrication for my digestive system, this time in a swallowable gel which is combined with dissolvable aspirin (left) that becomes the appealing mixture you see on the right

Yummy, huh?

So my enjoyment of food is a bit strained now, as a result of all of these bits and pieces. It's not the nicest feeling, having food that won't go down.

Gaviscon city.

So, this weekend, not too much going on, just some r&r and sleeping off the last few days. Hopefully everything won't deteriorate too much next week; just not very far to go now, which is great. Not far until the end!

special mouthwash

So a new week breaks, another 5 rads ahead and I'm still quite tired! I spent the weekend waking up at 11am and going to bed at 11pm, tired despite a long day.

 Sadly, I'm going back down to reduced hours at work - I don't want to rush and screw up my recovery. And it's just also not feasible for now. I'm a bit sad, and a bit guilty, as we're really busy + because I do feel like I'm letting people down - yeah it's not like I asked for HL, and yeah I know it's not my fault, but I'm still human and empathetic (yeah, the perfect boyfriend... still single, thanks for asking...) and wish I could do more.

Anyway, my throat is drying out and my saliva has become thick. I went to see the rads nurse today and she said, whilst the thick saliva is nothing they can affect, the drying out is.

It's basically saliva in a test tube - you crack open one of "A" and then crack open one of "B", combine it together in a clean glass. You swill half around in your mouth, spit it out, then swill the other half, spit again.You swill half around in your mouth, spit it out, then swill the other half, spit again. I'm so pleased it hasn't had any synthetic taste plugged into it... all of those things just make me so sick.

Anyway, 4 more rads to go this week (I'm on 4/15 as of today, will be over half way by the end of the week!) and then another sleepy weekend ahead I'm sure