Week 3 - Day 15 - Halfway

I thought when I reached the halfway point I would be popping a non-alcoholic cork in celebration of this milestone. Unfortunately, the pain is still radiating through my throat so there were no such festivities tonight. Rich reminded me that I have known this time would come, and he is right, but I guess I was hoping to get to week 4 or 5 before it happened. I also hoped I would be one of the ‘lucky’ ones who got off lightly and just lost taste or saliva, escaping the excruciating pain. Sadly it seems that’s not to be.

It was back to Milton Keynes today, so my already-too-long car journeys have now become almost twice as long. It took and hour and fifty minutes to get there, my appointment was twenty minutes, and then a return hour and fifty. I don’t have time to do anything else during these days, other than take meds and try to eat. I had some good advice this morning from someone who has been through this.

Right now, you are no longer "fighting cancer". Your doctors are. Your job has changed, it's much simpler.

1. Show up to your appointments.

2. Calories.

This sounds so easy - especially the calories part! Given appointments now take around 4.5 hours and every meal takes around an hour, it means surviving radiotherapy has now become my full-time job. I spoke to the head nurse today who is trying to get me an appointment with a doctor tomorrow to review my pain meds. I definitely need something stronger if I am to be able to continue to eat, but my concern with moving onto opiates at this stage is that they seem to render me like a zombie, so I would pretty much need to spend the next 2 months on the sofa, staring at the wall. I did manage to eat today, but it was both painful and stressful, so I can easily see why so many opt to use a feeding tube at this stage. That said, I am lucky I don't have many mouth ulcers and I can still swallow, so if I can get on top of the pain soon, I’m hoping I’ll be able to continue to eat.

In keeping with the current situation, I chose the song ‘Believer’ by Imagine Dragons today. I listened to it on my dog walk this morning and the lyrics jumped out at me –

Pain!
You made me a, you made me a believer, believer
Pain!
You break me down and build me up, believer, believer
Pain!

That’s probably enough said for today as I'm conscious I'm sounding very maudlin. Hopefully, by the time I am back from Milton Keynes tomorrow, I will have a goodie bag full of life-changing medication and things will start to improve. In the meantime, I’m off to torture myself watching all the delicious creations on Bake Off!

Week 3 - Day 14

I will start by saying I am grateful to her late Majesty for timing the funeral for today. Watching it on TV at the hospital meant that it filled the many hours of waiting around I was forced to do today. I had a 10.15am appointment, so my car picked me up at 9am. I felt conflicted about my treatment continuing on a bank holiday. On the one hand, I just wanted to stay in bed because the girls weren’t getting up for school, so there was no need for an alarm. On the other hand, I just want to get all my treatments out of the way as quickly as possible, so I was really pleased that I didn’t need to miss one. I am hanging on to the thought of the last treatment on October 11th. It is the shining beacon of hope that is keeping me going.

Just before we arrived in Oxford I had a call from the hospital to say the chiller that cools the machine had broken down and, being a bank holiday, it was proving difficult to source a repairer for today. They told me to come to Oxford to collect my mask, then I would need to go to Milton Keynes for the radiotherapy. The earliest appointment they had, however, was 1.30pm, so it would mean a lot of waiting around. I had the option to drive home first but it seemed pointless as I was already in Oxford, so I waited. I watched the funeral procession from the waiting room of a cancer hospital – as if watching a funeral isn’t sad enough already! I wasn’t at all prepared for this delay. I hadn’t brought any of my meds, nor any food, so when I got to Milton Keynes I was feeling somewhat apprehensive. The pain was starting to kick in, along with hunger, and also I was anxious about the new environment, having taken the best part of 2 weeks to become more comfortable with the situation in Oxford. Thankfully, they had biscuits and a coffee machine, so two ginger nuts dunked in tea later I was feeling a bit better.

It was strange being somewhere different for treatment. The Oxford staff had come to do the treatment, which was a huge relief, but they couldn’t play music over the speaker so I had to make do with quieter sound from a computer. Better than nothing. Today I chose ‘Fight Song’ although I was feeling so exhausted and exasperated by the time I finally got into the mask, I didn’t really feel much like a fighter. It didn’t help that the machine seemed to stop at the halfway point for a lot longer than it does in Oxford, and the music finished playing and there was a long pause before a new song came on. I almost waved for them to unbolt me as I had started to panic, but I’ve learned if I do this, it just means even longer in the mask. So a few deep breaths later, treatment finished and I was out.

I think I slept most of the almost 2-hour journey home. I have started taking a pillow with me and usually put it between the window and headrest so I can put my head into the corner. I pray I wasn't snoring, but there's a good chance given how blocked my sinuses are. Having left the house at 9am, I got home at 3.30pm – a very long day for a 20 minute treatment. Sadly I had a call this evening to say it will be in Milton Keynes again tomorrow as the part they need to repair the chiller wasn’t available today due to the bank holiday. I’m hoping it’s back to Oxford from Wednesday.

Eating seems to have become almost impossible overnight. Everything burns my mouth when I swallow, even after I have taken painkillers. I suspect I will need to move onto the codeine sooner than I had wanted to – either that or a feeding tube. Having desperately wanted to avoid the feeding tube until a few days ago, I can now see the reason so many people have them. The pain just becomes too much, and trying to eat on top of managing all of the side effects is just unnecessary. I’m still going to try to get through without one, but I’m no longer ruling it out. 

I'm also starting to develop a 'suntan' on my neck, so need to slather a special gel on it at least 3 times a day. This is fine if you have short hair but quite messy with longer hair, so you may find I'm sporting a pony tail for the next few weeks. I'm also trying to keep up with my daily exercises. Radiation causes scar tissue in your throat muscles which can make it hard to open your mouth fully, so every day I need to push my jaw open and hold it for a few seconds. I can only do this after I have taken painkillers as it really does hurt, but not as much as the swallowing!

As well as it being the Queen’s funeral today, it was also Rich’s birthday. Hoorah! Due the chiller issue, he spent most of it on his own with the girls, and when I finally made it home, I wasn’t really in the party mood – although I think the funeral had set the general mood for the day either way! To try to make it feel more like a birthday, I opened a nice bottle of Bordeaux and poured a glass for the birthday boy, not before having a big sniff first! I can't imagine it right now, but hopefully one day I will be able to enjoy a nice glass of wine again. 

The Burning Fires of Hell (in my mouth)

I woke up today with a sore throat. I took some paracetamol and I also decided to try the new mouth rinse (Gelclair) prescribed by my oncologist yesterday, which is meant to help with mucositis (the medical term for a very sore mouth caused by cancer treatment).

Gelclair is basically a thick clear gel that tastes like Ouzo. If you’re a fan of Ouzo, this could make for a great Saturday night treat, but for someone who isn’t particularly keen on aniseed, it felt more like a punishment. Why can’t they just make it mint flavoured like most mouth washes? The idea is that you rinse your mouth with it and it coats the inside of your mouth, thereby enabling you to eat without pain, whilst simultaneously healing your torturous ulcers. What seemed to happen in my case was that after I had coated my mouth with the Ouzo-like substance, it then burned every surface inside my mouth. It felt as though somebody had a lit match at the back of my throat and was holding it there, gently burning away the skin. It really did feel like the burning fires of Hell had moved into my throat.

I wondered if I had done something wrong. Maybe I hadn’t diluted it enough? Maybe I had swished for too long? Not one to give up easily, I tried it again before lunch, with slightly more water and slightly less swishing. It had exactly the same effect. It certainly didn't make eating any easier, and it made the pain a lot worse so I won't be continuing with this one. I do have stronger painkillers now – I was prescribed 100 co-codamol tablets yesterday, which felt worrying in itself if that’s the amount of pain they expect me to experience in week 3 - but I’m reluctant to hit the opiates just yet. I’m also a little apprehensive about the dosage they have prescribed – after surgery I managed on 8mg codeine which, quite frankly, was quite enough to send me into a funny place with all sorts of weird dreams, and this time I’ve been prescribed 30mg - almost 4 times the dosage. Although if it sends me four times as crazy that may not be a bad thing! 

All in all, today has been a fairly relaxed day, which was much-needed after the full-on radiation schedule of the week. I did manage a few chores – I walked the dog, did the laundry and changed the cat litter (I know, contain your excitement), but that was about the extent of my exertion. This part I am finding very hard indeed. I hate not being busy. And generally you would rarely find me sitting around doing nothing - unless I have a glass of wine in my hand – and even then I’m usually multi-tasking. I feel so….LAZY! Not to mention guilty, because Rich is having to pick up everything with the girls because I’m now pretty much useless. I’m trying hard to train my mind to not think this is laziness, but as recovery. I am fully aware I am putting my body through a very difficult treatment and it needs time to rest and repair. It’s still not easy though, and I would much rather be up and about doing all the things I used to do - and also having a glass of wine of course!

The other thing I’m finding hard to come to terms with is the way everything is so up-and-down. One minute I am fine, the next I feel dreadful. On the one hand, this is a good thing because one bad day doesn’t necessarily translate into a bad week, but on the other hand it’s very difficult to make plans (e.g. to meet a friend for coffee) when you have no idea how you will feel from one day to the next, or evening a morning to an afternoon. Thank you to all my lovely friends and family for being so patient with me – if it’s any consolation, I share your frustrations! 😉

Week 3 - Day 13

I have now done 13 radiotherapy sessions. I must admit, I’m not too comfortable pausing on this number for the weekend after my initial diagnosis took place on Friday 13^th but given I don’t have a choice I am trying not to think about it!

Only two more sessions until I get to the much-anticipated halfway mark when I can start counting down to the end. When I get to the ‘end’ I will, of course, feel incredibly relieved, but as I’ve said in previous posts, the end is not actually the end. The end of treatment simply means no more radiotherapy sessions. In reality, what happens is that the radiotherapy will keep cooking my throat for a few more weeks (or possibly months), so it will get worse before it gets better.

Unlike surgery, where recovery was pretty linear and I got a little better each day, I am finding with radiation that every day is different and even within each day things seem to go up and down. I spent most of yesterday afternoon in a complete daze on the sofa, drifting in and out of slumber. At that moment, I assumed that this meant the fatigue was kicking in and the next month or so would be similar every day. But I woke up today with a new lease of life, went through my treatment without any issues and when I came home I met a good friend for a lovely long dog walk in the sunshine. It was glorious and I didn’t need a nap the whole day.

Mask music of choice today was Salt n Pepa - I went right back to the 80s! 'Push It', 'Shake Your Thang' and 'Let's Talk About Sex' were all played while I was bolted down, and it took me back to some amazing days in Munich many, many years ago! Happy memories!

Unfortunately, the lovely afternoon quickly turned sour as dinnertime approached. My taste buds were last seen leaving the hospital sometime around 10am this morning, and my sense of taste is now sadly disappearing. I can only taste certain things at certain times, like a little salt on a chip, or the partial sweetness of ice cream. Often, I think I can taste something and my mouth starts doing somersaults in delight, but after about three mouthfuls all I can taste is disappointment – the taste evaporates completely and I feel like I am chewing on cardboard.

We decided to order takeaway tonight. In hindsight I should probably have opted for a something like a Pad Thai – nice slippery noodles with minimal chewing which would have been reasonably manageable. For reasons I can’t recall, we opted for a more generic takeaway. I ordered chicken breast with cheesy chips, thinking that the chicken would melt in the mouth and the chips would be soft and easy to eat. I managed a few mouthfuls of the chicken, but sadly could not taste it. This evening’s learning has been that chewing meat you cannot taste is quite an unpleasant thing to do, because you have the texture but not the flavour. It started to turn my stomach so I tried the chips instead. They were also too thick to go down, even dipped in barbecue sauce and washed down with lots of water.

At this point I was feeling very frustrated so I gave up. And then I did what any sane human being does when you can’t taste your dinner but you need to somehow get calories in - I got the ice cream out! Time to buy shares in Hagen Daazs everyone!

After dinner, I tried to watch a movie (The Batman) but slept through more of it than I actually watched, so I gave up before the end (there’s a theme here….) and took myself off to bed. At least there’s no radiotherapy tomorrow (although I am very keen to get number 14 done so I’m not hovering on 13 for too long!).

Week 3 - Day 12

Short post today because I quite literally have nothing to write about! I felt very tired when I woke up this morning and the tiredness hasn’t lifted the whole day, so I have spent most of it on the sofa. Having spent my life being a generally 'busy' person, I struggle with doing nothing and I’m feeling very frustrated that I haven’t managed to tick anything off my to-do list. But I also know that I need to listen to my body at the moment and rest when it’s telling me I need to rest. I received this advice today from someone who is a month out of treatment –

“Take time to rest, your body needs it to begin healing and eat as much as you can! Get used to watching TV, listening to music /podcasts and be kind to yourself.”

Guess I had better ‘get used to watching TV then! 😊

Lily Allen was the choice of music this morning – ‘The Fear’ of course when I was bolted down and then ‘Smile’ as I was finishing treatment - and yes it did make me smile.

I’m still eating (a lot) although am rapidly going off meat. The texture is just all wrong when you can’t taste it properly. Cheese is becoming my best (protein) friend and already I’m thinking of the magnificent cheese souffles I had post-surgery. They probably weren’t even that delicious, but as they were the first savoury food I had managed to eat after so many yoghurts, custards and shakes, they tasted absolutely divine. Tonight I enjoyed an alcohol-free Corona beer. Popping the lid off the bottle is probably the most 'normal' thing I have done in this otherwise topsy turvy world I’m currently inhabiting. Friday tomorrow – phew.

Day 11 - into the dreaded week 3

The 'dreaded' week 3 - most people say things go downhill quite rapidly from around week 3 or 4 so I am now braced for the worst. Today I’ve been going through lots of different scenarios in my head about how much of the radiotherapy I have left to endure. I’ve sliced and diced it every way possible to try to come up with a view that feels shorter and more hopeful. I have counted how many Mondays I’ve got (4). I’ve counted how many Wednesdays I’ve got (3), because having started treatment on a Tuesday, I now have fewer Wednesdays than Mondays or Tuesdays – that’s a more promising way to view it for a start (me over analysing?! never!). Next Tuesday I will hit the halfway mark, which means from next Wednesday I will be counting down to the finish rather than counting up to the half way point - also something to look forward to. While I find it helpful to try to frame it in a way that feels manageable, sadly the bottom line is that I can’t mould time to suit my needs, nor can I change it so that I have fewer days left than I have already done. That time will come, but it’s not yet. 11 days done, 19 to go.

I’m also pleased to report that the new anti-sickness pills are really doing a great job. Not only are they stopping me from feeling sick, but I have found they also help me sleep too. Last night I took one before bed and, where I would normally toss and turn for hours on end thinking about cancer and therapy and other such thoughts that torment me in the middle of the night, last night I fell straight asleep and didn’t wake again until my alarm rudely went off. Result! I wonder if I can keep taking these after I finish treatment?! The downside is that they also make me feel a bit drowsy during the daytime so I spent a good chunk of this afternoon on the sofa, but that could also just be radiotherapy fatigue. It all blurs into one great big blob of rubbishness.

The mask part seems to be getting easier too, or at least, I am getting better at focusing my mind. Today’s music choice was Queen so I was rocking the mask to ‘Don’t Stop Me Now’ followed by ‘Radio Gaga’ and hilariously ‘I Want to Break Free’ – made me chuckle as they were unbolting me for that one.

I am still managing to eat well, although rice was tricky this evening. I feel as though I have gone back to around 4 weeks post-surgery as my ability to eat is similar to that time. So far I definitely have not lost any weight, which is a very good thing, as every day that I manage to eat is a day further away from the feeding tube. If anything, I have probably gained weight because I am eating as though my life depends upon it – full meals with puddings and snacks in between. I am so afraid of losing my sense of taste that I feel obliged to eat everything I love now just in case I can’t taste it tomorrow! I don’t think that’s how I should be doing it, but it’s not doing any harm just yet. I might be in trouble if my sense of taste stays after all though!

Week 2 - Day 10 - 1/3 through

I have removed the word ‘disco’ from the title as it no longer feels like a disco, although music has become a key focus of the sessions. Today’s choice of music was Adele. I can choose the first song, after which they just play other songs by that artiste, so I started with Take it Easy On Me (it felt appropriate), next came Hello, then When We Were Young. These kept me pretty well occupied for the 15 or so minutes I was being zapped. Music definitely gives me a focus and helps me not to think about the mask. 

I have also tried really hard to change my attitude towards the mask. I have realised that I was thinking of it as the enemy. I was terrified of it, so much so that the mere thought of it resulted in a rising panic in my stomach and chest. So I gave myself a good talking to and am trying to see it as my friend - love thy enemy and all. Cancer is as much a mental battle as it is physical and it is so easy to become overwhelmed by it all, so the last thing I need is a panic-inducing mask on top of it all. So now my ‘friend’ the mask goes on and is there to help me, to focus the beams so that the cancer can be properly targeted. Yes, this monologic discussion goes on in my mind every day! I may need a psychiatric facility when the radiation finishes!

When I am bolted to the metal sheet, I usually keep my eyes closed for the duration of treatment, in case I start to panic. But I’m now starting to open my eyes a little, and what I see are 3 red lights and a green light. The room is mostly dark. And then the large Star Wars-type machine that moves up around me, like a planet orbiting the sun. Not sure if I would be the planet or the sun in this scenario, but it is pretty cold so probably the planet. I wish I could video it to share as it is a truly surreal experience, but sadly no one can come into the room while treatment is being administered (for obvious reasons).

I was lucky to have a 'Tuesday Treat’ today at the hospital too – my first ever reflexology session. Similar to the acupuncture, it was basically an opportunity to lie down in a dark room in peace and quiet, with a nice little foot massage thrown in. What’s not to like?! 

Eating is becoming noticeably harder, but I am still managing meals and liquids at the moment. I need a lot more water to wash down food as it gets stuck quite quickly now. I was given a prescription for some mouth gel for the ulcer and a new tube of Flamigel, which I put on my skin around the radiated area 3 times a day to try to minimise the impending skin burns. Seems to be fine so far but I am not sure when this typically kicks in. My bedtime routine now requires a significant amount of time (Rich can’t believe it's possible that I need more time to faff in the bathroom than I did pre-cancer) – I need to do 2 mouth rinses, each a minimum of 45 minutes apart, brush with a soft brush using a special toothpaste for dry mouths, apply a layer of gel to my neck and take my anti-sickness meds and paracetamol, if needed. Thank goodness make up is no longer needed. Well, it probably is needed to avoid causing nightmares in small children, but thankfully it's not permitted under the mask. Just as well as I have enough 'personal admin' to think about at the moment!