I have attempted to write this post a few times over the past week, but never got around to finishing it, so week 7 recovery has now merged into week 8. Don't worry, you haven't missed much, other than a parking fine, a speeding ticket and some elves. More on those below.
I think I may need to start using different terminology because the word ‘recovery’ implies a linear progression from being unwell to being well, and I certainly don’t feel that reflects my reality at all. This whole cancer journey, from diagnosis through treatment and into recovery, has been like being on a giant rollercoaster – up, down, upside down, fast, slow, dropping suddenly, spinning in all directions…with some flat parts and calm moments thrown in for good measure – and it feels like a ride that isn’t going to end any time soon.
My sleep continues to be a challenge. Anyone who knows me well will know that I love my sleep. I have always been a very good sleeper, and I struggle on occasions when I don’t get a good nights’ sleep. As a student, I could easily put in 12 hours a night. My dad tells a funny story from when he drove to Munich to pick me up and bring me home many years ago (I lived there, it wasn’t just a weekend break!) – I pretty much slept through the entire journey from Germany to Wales, not even waking when there were some issues at the border, with all the bright lights and noise. So not being able to sleep at the moment is both puzzling and frustrating, and is also taking its toll on me physically. I seem to have taken a few steps backwards in terms of pain, with the pain in my mouth and throat having returned, and I feel exhausted all the time. I took Nytol for the past 2 weeks and whilst it didn’t help with falling asleep, it did help me stay asleep for a good 8 hours. Unfortunately, I can’t take that for more than two weeks so I have sadly been reacquainted with insomnia for the past few nights. My GP has prescribed me sleeping pills, but they make me feel so groggy the next day that they aren't for me. So I have ordered some illegal melatonin from the US and hopefully my Christmas present this year will be the gift of sleep!
It is probably not helped by the fact that I felt quite well on the days I had been sleeping well, so I have likely been doing too much and not taking enough rest. Recovery is an odd place to be, because externally there appears to be nothing wrong with you, so you get up and go about your day as if there is actually nothing wrong with you. Such is the draw of getting on with life, it’s easy to forget you are meant to be balancing activity with rest, to allow your body the time it needs to fully repair after the trauma it has endured. This has become very apparent to me over the past few days, after a few nights of barely any sleep, as it felt as though I had been transported back to week 3 after treatment, when things had started to get better but still hurt a lot.
I still seem to spend much of my time either trying to make appointments or attend them. I went back to Oxford yesterday for the first time in over a month. I had an appointment with my consultant this time, the original Head and Neck Cancer (HNC) specialist who did my surgery at the start. He is the one who will be looking after me and doing regular checks for the next five years. The appointment went well. He checked my mouth and had a poke and prod around my neck and he was happy with what he saw. I asked many questions, including:
Why am I still getting pain under my tongue and in my throat?
He
explained that since the radiation would have kept working for 2-3 weeks after
treatment finished, I would technically only be 5-6 weeks out of treatment now.
But even in another few weeks, the pain will likely still come and go. He said
things probably wouldn’t be back to normal for 6-9 months. Whaaaaat?! I sort of
already knew this from the forums I am on, and in fact for some people it can
take years, not months, but it was still difficult to hear it directly. Of
course, it doesn’t mean I’ll be in constant pain for 6-9 months, but I should
expect it to come and go, as it has been doing.
Why is my taste getting worse again after it seemed to get better for a short while?
Similar
to the pain, apparently my taste will continue to evolve over the coming months
and possibly years. It is so strange, things that tasted good last week are tasteless
this week and vice versa. It’s rather like having a toddler again, where they try
new foods and love them, so you stock up on those foods and then by the
following week they hate them and they all go to waste. Except now I’m the toddler!
Bizarre.
Why am I constantly grinding my teeth and what can I do about it?
The answer was very likely stress rather than anything to do with treatment, but he was concerned about my teeth being more fragile and vulnerable post-treatment so has suggested I ask my dentist for a check up and to have a soft mouthguard fitted to stop the grinding. Oh joy – more medical appointments to organise and attend!
Why have I become an insomniac and what can I do about it?
Again, very likely stress-related rather than specific to treatment, as apparently many people find they sleep more in the months after treatment due to the radiation making you extremely tired. I absolutely share the extremely tired part with all those others, but the sleep unfortunately continues to evade me. He didn’t have a solution to this, other than time itself.
Christmas is coming – will a few glasses of champagne cause a recurrence? Or can it cause further damage to an already burned and scarred throat?
He
was very adamant that as this is a cancer caused by HPV, alcohol in moderation
will not cause a recurrence. I’m told I would need to drink VERY heavily for a
long period of time for alcohol to cause a non-HPV throat cancer, so a few glasses
of champagne would definitely not do any harm, and may in fact help with the insomnia
and teeth grinding above! He also said many people find that they can never
drink red wine again because it tastes so awful post-treatment. This is very
sad as I have always enjoyed a nice glass of red in front of a roaring fire in
winter, but if I must only drink champagne for the rest of my life then so be
it (hehe). Having only had 1 drink in the last 3+ months, I won’t be rushing to
pop a cork anytime soon, but it’s good to know if I would like to enjoy a festive
glass with friends and family that it isn’t going to put me straight back in
hospital. I fully appreciate this sounds far-fetched, but when you’ve lived
through a cancer experience, you really don’t want to take any chances that could
take you back to that dark place.
After my appointment, on the way home I drove past a shopping mall so decided to pop in to see if I could pick up any stocking fillers for the girls. I should really have come straight home to rest after the drive, but sometimes a change of scene can also be good for the soul. Unfortunately, this mall tormented my poor soul instead – Poundland, B&M, Wilko, Iceland, to name but a few. I say unfortunately, but when I told my girls they wailed in disbelief that they hadn’t been with me and begged me to take them back as they love those shops! I guess you can get a lot more for your money as a teenager! I did manage to pick up some very random things – Christmas gel stickers for the window, an elf footprint stencil, an elf reindeer onesie (!), some snowman loo roll and a chocolate orange (strong flavour – could work?!) – which pleased the girls, but I was shattered when I got back.
I’ll check in again before Christmas, hopefully I won't have had any more speeding letters or parking fines before then. And fingers crossed for being able to eat - and more importantly taste - Christmas lunch!
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