Week 4 - Day 20

It feels good to be writing 'Day 20' – I have finally reached the end of week 4 and am now two-thirds of the way through treatment. The session today was a challenge. I took morphine first thing this morning, as advised, to help me eat breakfast. That part was a success, but unfortunately the morphine seems to be stronger than my anti-sickness meds so by the time I arrived at the hospital I was practically green with nausea from the car journey. I had all of two minutes to try to breathe and re-set myself, before I was called into treatment. I explained to the team what had happened and they were very reassuring, telling me to raise my hand at any time if I thought I was going to be sick so that they could rush in and unbolt me. This seemed to make things worse as I started to visualise in my mind how they would manage to clean the mask (which is like mesh, so full of little holes) in the event of an unexpected regurgitation of my breakfast. This obviously didn't help me! Also probably too much information and I don’t want to put you off your dinner. I asked them to play Someone Like You today – I was in need of some loud, shouty Adele to distract me. This seemed to do the trick, along with some focused breathing, as I thankfully went through the procedure without issue.

Afterwards, I was treated to some pampering, if you can call it that. I had a 15 minute relaxation session with the lovely lady from the Penny Brohn charity. This involved lying back in a reclining chair in dim lighting while she did guided breathing. There is a good chance I may have had a tiny power nap during that time; I certainly felt very relaxed. This could, of course, have been because I had been feeling so awful after the car and treatment that any opportunity to lie down was extremely welcome. It got even better after that as I then had a reflexology session – more time lying horizontally, while someone massaged my feet and toes. Such a strange sensation. There was no doubt this time, I definitely fell asleep as I woke myself up snoring a few times (my throat is so blocked!) and had to keep apologising to the poor lady enduring the noise. She was very lovely about it. Frankly, it was just nice to have someone performing a non-medical procedure for a change.

The journey home was as bad as the outbound ride had been, so when I stumbled through the front door, I couldn’t do anything other than lie down (again) – and have mostly stayed that way today. I managed some cheese pasta for lunch and a McDonald’s cheeseburger for dinner. I had a strange craving for something other than bland cheese dishes, so it was a morphine and maccy’s fest this evening. I needed a lot of water, and it did hurt, but I managed it! Now to chase it with a McFlurry! Then it's back to the sofa for the torment that is Bake Off. I’ll probably spend tonight dreaming about eating all of those delicious Bake Off goodies. One day!

Week 4 - Day 19

I didn’t sleep well last night. My nose and throat are becoming more blocked so I kept waking myself with my very loud snoring. Somehow, I still managed to roll out of bed ready early, ready to embrace the week ahead and keep moving through the treatments. I just want this all to be over with as soon as possible. I took my meds as usual, but when I went to eat my Weetabix (as usual), it was impossible. No matter how long I let it soak and soften, the pain was just too much so, reluctantly, I gave up and took the dog out for a walk instead. Perhaps I just needed to allow more time for the medication to kick in. The weather on my walk just about summed up my mood. I left the house in glorious sunshine, wearing sunglasses and a hoodie. Five minutes into my walk, it started to rain, but the sun was still shining. Similarly, on the one hand I feel optimistic and hopeful that I only have 2.5 weeks left – in total 16 days including the next 2 weekends to be precise – but at the same time I experienced my own internal rain shower because until today I have always been able to manage breakfast. In fact, it has always been the easiest meal. I tried hard not to let this get me down, but it was a real blow because I was hoping to continue to eat right through treatment.

Today's driver was one I don't particularly like - the one who told me about his brother-in-law dying of cancer. He drives quite erratically and his car smells of stale coffee. He always wants to chat. Before we had even got to the end of our road this morning, he announced to me that Saturday had been a really bad day. I learned that his wallet had been lost, and luckily found again, and was being posted to him. I could barely bring myself to reply. If that constitutes a really bad day, his life must be pretty good. I would trade cancer for a lost wallet any day of the week.

Mondays always seem to be trickier than the other days, probably because the break from treatment makes it feel like I am restarting again each week, and a whole week feels so long. It didn’t help that I couldn’t decide on a song this morning. I was frustrated because none of the songs I had shortlisted were jumping out at me; none of them felt right for today. It is interesting that music has become so important to me throughout this process. It gives me focus while the mask is being put on and the bolts are being closed. It comforts me when the radiographers leave the room. It calms me when the machine starts moving. Right before I was called into the radiotherapy suite, Whitney Houston’s ‘One Moment in Time’ played on the radio in the waiting room, and I decided to go for that song today, because I hope my cancer is just that – a moment in time.

The senior nurse called me when I got home to discuss my medication. She suggested I stop my current routine of taking codeine and ‘topping up’ with morphine, and instead primarily take morphine, along with paracetamol and ibuprofen, which she hoped would enable me to get back to my Weetabix. So I spent the rest of the day in a morphine haze, not really moving from the sofa and struggling to keep my eyes open in front of the TV. It did, however, do the trick and I managed to eat both lunch and dinner (mac n cheese for lunch and a cheese omelette for dinner – cheese is the new meat in my current world). Quite a result given the breakfast fail!

A different sort of Sunday

When I opened my eyes this morning, for a millisecond, I felt like a normal person. A person not going through cancer treatment. As soon as I swallowed, the pain hit me and my reality brought me hurtling back to earth very quickly. For a while, I lay in bed trying to remember my life before it was turned upside down. What did I used to think of when I woke up? Probably just what I had to do that day, all of the tasks and chores that were ahead of me, as well as the fun things I might have had planned. Now I am consumed by everything cancer-related as soon as I wake up – the immediate thoughts like the pain, the meds, the treatment, the timings, as well as the longer term concerns about life and whether it will ever be truly ‘normal’ again. I wonder if I will ever wake up and not think about this time; I certainly hope so.

It is now almost 6 months since I first spotted the lump in my throat, and next Wednesday (28^th Sept) marks 5 months of being on the cancer pathway. Almost half a year living this hell. No wonder it feels so all-consuming. 

The challenge with cancer treatment being pretty much the only thing I have to focus on is that life has become so boring! Days that were once filled with fun things, social activities and nights out are now filled with medication schedules, pain relief and just surviving each day. Weekends that were previously full with social catch ups and delicious long lunches are now completely empty. I do actually feel well enough to be able to go out and do things, perhaps to meet friends for coffee, but the problem is that it all depends on where I am in my meds schedule. If I’ve just taken my medication, then I’m not in much pain, and that is usually when I feel physically able to see people. However, the challenge is that the same medication also make me feel drowsy and a sometimes a little bit nauseous too, so even though I am sufficiently pain-free to socialise, at the same time I’m generally too drowsy and glued to the sofa. I am also too drowsy to drive so I feel quite 'stuck' at home - I've been driving since I was 17 so I've never been stuck before!

This vicious circle is proving very challenging for me because I’m desperate to do something other than housework, dog walking and taking meds – not forgetting the big deal that is eating of course - but I just don’t have the energy. Certainly by the time the evening arrives, I even find talking quite an effort, so I quietly bob around the house from sofa to chair and back to sofa. I keep thinking I will start doing some sorting - the loft, a drawer or a cupboard - but it all feels like such an effort, not to mention even more BORING! I have to say this blog keeps me sane, helping me to articulate all of the thoughts whirring around in my head. 

I never thought I would say this, but thank goodness it’s Monday tomorrow and I can get out of the house and move forward with treatment. I can’t wait until I am writing that it is finally over – 12 sessions and counting. I know I then still have the dreaded 2 weeks afterwards to deal with (apparently it gets worse before it gets better as the radio keeps 'cooking' your insides), but at least I can stay in bed, knowing it’s over and the healing process is imminent. Must keep looking forward and stay positive! 

Le Bon Weekend

This is my fourth weekend during treatment. On the one hand, I could really do without treatment stopping on a weekend because I just want to get it over with as quickly as possible. Without weekend breaks, I would be able to finish treatment 12 days earlier (6 weekends), so by my calculations I would be finishing next Thursday. If only! The weekdays also provide structure for me – mornings are busy getting treatment done, and I have some rest during the afternoon before the girls get home from school, whereas weekends feel quite long at the moment because I’m not really doing very much and there's a limit to how much Netflix a person can watch (or maybe that's just me?).

On the other hand, the weekends are a welcome break from the long car journeys, the hospital and generally the stress of it all. I can stay in bed as late as I like and don’t have to rush back from my dog walk to the awaiting car. Similar to eating, I am pleased I’m still managing to get out for a walk with Oscar every day. I’m definitely walking more slowly than I did previously but it is nice to escape the house and get some fresh air; it is even better when the sun is shining.

Quite a lot can happen on my dog walks. This is often the time I select my song for radiotherapy. I play lots of songs until I get to the one that jumps out and me and matches my mood that day. Sometimes I have entire conversations with myself on my walks, usually around the topic of how to slice the number of remaining sessions.

Me: Only 12 sessions left. Hoorah!

Also me: But that’s still 2.5 weeks, so not really that great

Me: But on Tuesday I will complete 4 weeks!

Also me: Yes, but there are still 2 weekend days and 2 treatments to go until then and look how quickly things went wrong last weekend

Me: Yes but I’ve now got stronger pain meds. Plus I am still eating!

Also me: Don’t forget you’ve got the skin burns and mucus to come…

And so I go on, back and forth, trying to stay positive but at the same time being very realistic about the situation I am in. Perhaps one of the side effects of all the meds is schizophrenia?! Quite typical that I find myself arguing with myself though 😉

I have managed to eat again today – some Weetabix ‘soup’ for breakfast with a coffee flavoured Fortisip on ice (I try to pretend it’s an iced coffee) and a chicken, pesto and mozzarella toastie for lunch. I have to say, I even managed to impress myself with this. Admittedly, it was quite small and I didn’t eat the crusts, and it was pretty painful unless I washed every mouthful down with a big gulp of water – but still! Since then, however, my throat has been burning continuously, even after my codeine top up, so I suspect I may have overdone it. You don’t know these things until you try, but I am not quite ready to move to soups and shakes just yet, even though I know that time will come, and probably very soon.

Week 4 - Day 18

I’m not sure if it’s because it’s Friday, or because of the new meds, or because I had my treatment in Oxford for the first time this week, or just because, in the words of my oncologist, your body learns to adapt to the pain, but whatever the reason, today has been a much better day. I never thought I would say it was good to be back in the hospital, but the familiar surroundings of the Oxford hospital, where the staff know my name, know the setting, and more importantly, know how to operate the music, certainly made for a more comfortable experience today. 

Music today was Chumbawumba’s ‘Tubthumping’ – you probably think you have never heard of this, but you would definitely recognise it if it were played on the radio. Think ‘I get knocked down, but I get up again, you're never gonna keep me down.’ It’s very much a feel good song. I felt I was really embodying the spirit of these lyrics today (maybe not the ‘I drink a vodka drink’ part!). It has been a tough week, certainly the toughest so far (although I suspect there is much worse to come) - daily four-hour car trips to an unfamiliar environment, coupled with significant pain and tiredness. Yet today I felt more positive with the pain under greater control. Yes, another reason today was a good day was because I was prescribed liquid morphine which I can take every 2 hours if needed. That feels quite excessive to me (although possibly also super fun) so I won’t be taking it that often, but it can be used to bridge the gaps between meds.

I am still managing to eat ‘normal’ foods. Apologies if I am repeating this every day, but I feel like shouting from the rooftops when I have eaten something because so many people in my situation are already on feeding tubes at this stage, so every single piece of solid food feels like an enormous achievement. Evenings are the most challenging time because the pain becomes worse by then – presumably the wounds are sore after a day of eating and talking – so I try to get most of my intake over breakfast and lunch and that way I don’t have to worry too much about managing dinner. I am clearly still managing to get enough calories in though, so much so that at my weekly weigh-in today, it seems I have now gained 2kg since starting treatment! That wasn’t quite the intention but I did enjoy all of the milkshakes and desserts!

When I got home from the hospital, I collapsed on the sofa with the pets. Having never watched daytime TV, it’s quite a novelty to switch the TV on and watch whatever happens to be showing. I didn’t even know there were so many channels these days (that makes me sound SO old!). I’ve been watching A Place in the Sun and another one to do with living in a French Chateaux. I have to say, I could happily move to a nice chateau and become a chatelaine. Rich is going to read this and ban me from watching these programmes soon! Happy Friday everyone!

Week 4 - Day 17

It feels good to finally be at a point where I have fewer sessions left than I have already done. 17 down and 13 to go, so just 2.5 weeks left. Although my attitude to the amount of time left changes every minute of every day. Had you asked me this morning how long I have left, I would have said I STILL have 2.5 weeks left, but this evening, simply typing ‘Day 17’ felt positive.

It was another 4 hour car journey to and from Milton Keynes today. It is exhausting doing it every day. I fully appreciate how silly it sounds to say sitting in a car is exhausting, especially as I’m not even driving! I just sit in the back seat with my pillow and my air pods, willing the time to go faster. I can’t even tell what is radiotherapy fatigue and what is sheer boredom fatigue, but I just know I am pretty tired.

The session itself today was uneventful. I chose the song ‘abcdefu’ (clean version because I’m not allowed to choose songs with swear words – maybe the radiographers are a sensitive bunch?) by Gayle. I think I was trying to send Milton Keynes a not-very-discreet message. Seemingly, that worked well because on the way home I had a phone call to say the machine in Oxford is finally working again – hoorah! I can’t tell you how relieved I am to go back to my ‘shorter’ 2.5 hour daily journeys. Of course, it’s all relative. It reminds me of the kids book ‘A Squash and a Squeeze’ by Julia Donaldson. In the book, an old lady feels her house is too small, so she consults the wise old man who advises her to bring in a load of animals and of course the house then feels even smaller. When she gets rid of them all, her house feels huge. I think this will be how I feel tomorrow going to Oxford – suddenly that 2.5 hour journey won’t feel long at all after 4 days of travelling to Milton Keynes.

Pain has been slightly more bearable today as I am slowly getting to grips with my new med schedule. I seemed to be okay on 30mg of codeine, but it didn’t completely get rid of the pain, so the doctor had told me to try 60mg. First thing this morning I popped two and spent the following three hours on an entirely different planet – sadly not in a fun way. So I will be sticking to 30mg in future. I’m beginning to realise I won’t be able to get rid of the pain completely. Rather, the aim is to dull it sufficiently so that I am able to eat. 

Ah, eating – the second part of my new, stressful, full-time job! I am still managing some foods - mostly soft foods (I'd like to say a big welcome back to the post-surgery cheese soufflé!) and meal shakes, because my mouth is too dry/sore to be able to swallow anything too solid. The burning is still very much there, so mealtimes now resemble a drinking competition, but without alcohol - I am poised ready with multiple glasses of water, taking a big gulp as soon as I have swallowed the food, so the ‘fire’ doesn’t have much of a chance to burn before the water puts it out. Whilst this has the added benefit of ensuring I stay hydrated, it does mean I fill up very quickly so it’s little and often rather than three meals a day. All that said, I am pleased I can still chew and swallow at this stage and hope that I can continue to do so throughout. My neck still looks normal (not burned) and my mouth aperture (yes, that's an actual thing) is also normal - so lots to remain positive about. For now...

Week 4 - Day 16 - 'Looks like a girl but she's a flame'

Another long day in Milton Keynes today – third time in three days. I have managed to find a single advantage to this new routine, in that I don’t have to get out of bed as early as I do for Oxford, because the appointments tend to be around lunchtime rather than morning. The flip side, of course, is that I also get home much later. Today I left the house at 11.15am and got home at 4.30pm. The irony is they are telling me to eat, eat, eat, yet they are booking appointments at lunchtime, and sadly I am quite far past the ‘grab a sandwich’ phase.

My mouth is still like a blazing inferno so I saw a doctor today. He was a jolly American chap who was very keen to stock me up with a LOT of medication. He checked my mouth and confirmed that what is causing the pain are indeed severe burns inside the mouth, that will only get worse, and so the only way to get through the next 6 weeks or so is to take stronger pain meds. In addition, he would like me to use 3 different mouth rinses 4 times a day. This is getting complicated – I can feel a spreadsheet coming on 😊 not to mention the added complexity of being out of the house for more than 5 hours each day. Looks like I’ll need a portable meds bag now too. To complement all of these meds, I was also advised to take omeprazole to protect my stomach from the ibuprofen, and a laxative (thanks codeine). Cancer does not recognise dignity, clearly.

I was trying to describe how it feels to the girls today. It’s difficult to explain, because it’s not the same as a sore throat. I mean, my throat is sore, of course, but it’s a lot more than that. It’s burning. I feel like a fire breathing dragon (maybe it’s a Welsh thing?). I walk around with my mouth open to try to cool it down, desperately sucking the cold in air in to provide short but sweet relief to the raw wounds inside my mouth. It can help to try to imagine these were external rather than internal wounds (although you don't need to eat or breathe through any other part of your body so not quite the same). But for all intents and purposes, I look pretty normal. Well, that might be a stretch. I look quite haggard by now, but my neck hasn’t yet changed colour (that joy is to come) and it’s certainly not burned and peeling yet. I think perhaps one way to describe it is to think of the hottest curry you have ever eaten, think about how your mouth felt, that feeling when you really need something cold, urgently, to cool it down. Multiply this by 100 and deduct any cooling drinks and now you may be close to how radiation to your throat feels. Let’s hope the codeine does its job properly and this is the last pain post.

Today’s choice of music was Alicia Keys ‘This Girl is on Fire' - enough said.