Just over three months have now passed since treatment finished. That's twice the length of treatment itself, which feels incredible really, because it feels like a very long time since that last day in the mask, so I still find it hard to believe I managed to get through six weeks of it. At three months, all Head and Neck Cancer (HNC) patients have a scan. In theory, allowing three months means that my body has had enough time to physically heal, so the only thing that should now show up on an MRI scan is any remaining cancer. If done earlier than three months, the scan can give misleading (false positive) results, because some ‘radiation hotspots’ can appear similar to cancer, so they wait a few months until some of the hotspots have subsided. I asked my doctor why I was having an MRI scan rather than a PET scan at this stage and apparently it’s because of the type of treatment I had, i.e. surgery first then radiotherapy and no chemo. Had I opted for chemoradiation, I would be having a PET scan now. I assume that’s because that particular treatment shrinks the tumour until it is no more, but doesn’t physically remove it like surgery does, so the PET scan can check it has definitely gone. For me, the 3-month MRI is to check the radiation has worked, and that if there were any lingering microscopic cancer cells left after surgery, they have now been destroyed.
I was somewhat concerned before my scan, because I had a routine dental check the day before the MRI – my first since the last fateful dental appointment when the tumour was properly identified. My teeth were all fine, which was good news, but when my dentist had a poke and prod around and under my jaw, it hurt quite a lot and felt very tender. She could feel a lump too, and was concerned enough to ask me when my next appointment was. When I said it was a few days later, after the MRI, she suggested I mention the tenderness to my oncologist. Of course, this sent me into a spin, but I tried not to think about it, telling myself instead that the MRI would be the source of truth and I should wait for the results before worrying about it.
So it was back into the Tunnel of Doom last week. I don’t enjoy having any type of scan – who does? - but the MRI is probably my least favourite. I know some people find them quite relaxing, but I am not one of those people and this time was as unpleasant as ever. The biggest challenge with having an MRI to your throat and neck is the fact that they ask you to not swallow for the duration of the scan. That’s 40 minutes! 40 minutes! This is actually physically impossible of course, so they said if I desperately needed to swallow, to do so when the clunking noises stopped in between scans. They assured me that I would know when this time came because it would be quiet for around one minute.
It turns out I did desperately need to swallow, pretty much for the whole 40 minutes, because the more I thought about not swallowing, the more saliva built up in my mouth and I needed to swallow. And I am certain that it wasn’t one minute between scans when the clunking and whirring stopped, it was literally less than five seconds. When the noise stopped, I would wait a few seconds to see if it had really stopped or if it was just changing to a different noise, but in doing so, the noise then restarted so I had then missed my only opportunity to swallow for another 5 minutes or so.
To recreate the fun experience of a throat MRI for yourself, when you’re lying in bed this evening, lie on your back and stay as still as possible. To make it even more realistic, you could put a clear plastic crate over your head, as long as it’s very close to your face so that if you open your eyes you feel as though you are in a plastic light tunnel. Whatever you do, do not move your head! Do not move your tongue! And above all do not swallow! It’s like gremlins might appear if you do. Actually, it’s worse than that because if you move, they have to redo the scan and, frankly, who wants to lie there for longer than 40 minutes in the hellish world of not being able to swallow.
As with all things in life, the more you try to focus on not swallowing, the more you feel the need to swallow. So I spent 40 minutes lying there, trying so hard not to think about the fact that I could not swallow, but then all I could think about was the fact that I could not swallow. I tried scrunching my toes. I tried playing word games in my mind. I tried breathing exercises, but that made things even worse because that seemed to somehow stimulate saliva which made me want to swallow. And during the moment when I felt I was finally starting to relax and not think about moving my tongue or swallowing, I almost fell asleep and then felt myself jerk awake and – you guessed it – I swallowed. Argh. I wish they had never mentioned not swallowing (I don’t remember that from my last MRI) because then I might not even have thought about not swallowing!
Anyway, I made it through the scan and the radiographer said to me afterwards that she wished all her patients would lie as still as I did (apparently I barely moved – I didn’t move my tongue and I only swallowed at the correct times - result!), which is really quite phenomenal because I felt like I was twitching the whole time. On the plus side, I had a nice comfortable little pillow for my head which made a nice change from the radiotherapy table, where I was forced to lie on a hard plastic surface and pinned down by the mask.
Two days later, I went back to Oxford for a meeting with my oncologist. I am incredibly relieved to say that the MRI showed what in the world of cancer is known as ‘No Evidence of Disease’ (NED). They don’t really say your scan is clear or your cancer has gone, because with cancer you are only ever as well as your last scan. What they can say is that at that moment in time, there was no evidence of cancer in my throat or neck, and having been through hell over the past 9 months, I will take that, thank you very much.
For those unfortunate enough to be living in or have experienced the world of cancer, whether it’s yourself or someone you know, you will know that ‘scanxiety’ is a very real thing. I hadn’t really allowed myself to think about having the MRI until the week of the scan itself, and then I experienced the full scanxiety for myself. On the way to the MRI (an hour and 15 minutes in the car), so many memories of the early days of my diagnosis flashed before my eyes. I was haunted by the memory of going for the first MRI, when the cancer was initially being diagnosed, when you find yourself in the truly awful place of knowing you have cancer but not knowing what the prognosis is, not knowing what stage or type of cancer, not knowing if you had days, weeks, months or years left. Of course, none of us know this latter point, but cancer does have a knack of bringing you face to face with your own mortality.
So when your initial MRI confirms that you have cancer, but you don’t know the detail yet (the biopsy will tell you that), you pretty much start planning your own funeral because your mind wants to cover all eventualities when you don’t know what lies ahead of you. Only when you have clarity about your diagnosis and you have a treatment plan in place, it becomes much easier to deal with. So a note to anyone starting this journey – it won’t always feel as terrifying as it does right at the start.
Anyway, I digress – back to scanxiety. On the drive to the MRI, I found it impossible to stop my mind filling with all of these thoughts – what if it the cancer is still there? What if it has come back somewhere else? What if it is more aggressive this time? What if that neck node shows up positive? All of these thoughts are entirely natural and try as I might to put them out of my mind, when you are alone in a car on your way to your 3-month post-cancer MRI scan, let me tell you it is VERY hard to put those things out of your mind. I decided to put on my radiotherapy playlist to see if that would make me feel stronger – all of those songs that I listened to every day for 30 days, that got me through the toughest of times in the mask and the hideous, long car journeys. It didn’t work. I cried pretty much all the way to the scan. It was a very different story on the way home though. I didn’t feel sad anymore, I felt relieved, and somewhat angry, so I played every single song I could find with swear words in and sang along very loudly, all the way home.
I was far less emotional driving back to see my oncologist two days later, but my anxiety was still sky high and the ‘what if?’ questions still very prominent in my mind. So it was a huge relief to be told I show ‘NED’. The pesky neck lymph node is still there, it showed up on the MRI and it is still palpable. They cannot categorically say that it is not cancer but what they can say is that it doesn’t show any characteristics of being cancerous. I guess that’s the best I’m going to get at this point in time and can only hope that it shrinks and eventually becomes a normal size node.
So that’s a summary of last week, but of course there has also been a whole festive season since I last wrote! I had been quite apprehensive about the week prior to Christmas, when I had lots of socialising to do and, having not socialised for many months and only being eight weeks post treatment, my fatigue was still high and my ability to eat still not 100%. Of course, I was very much looking forward to seeing my lovely family but I was also concerned about the level of effort required. As it happened, it was a lovely few days and got us all very much into the Christmas spirit, but I can’t deny I was exhausted at the end of it and was very glad to have some rest the following week.
We also received some utterly tragic news a few days before Christmas about a dear friend‘s nine-year-old son passing away suddenly in his sleep, while on a holiday of a lifetime in Lapland. This utterly heartbreaking news cast a dark cloak of sadness over the entire Christmas period. At a time when I thought 2022 couldn’t bring any more bad news, sadly I was proven wrong. My heart breaks for my friend and her daughter and I have been doing everything I can to support them.
In terms of eating, it certainly feels like things are not really improving, but I’m sure they are very slowly. I’m pleased to say I did manage to eat Christmas lunch, although I may have been a little tipsy as I had enjoyed a few glasses of champagne at that point, which probably helped! It took me quite some time to get through it, but I did eat it and very much enjoyed it.
However, shortly after Christmas, my mouth started to hurt again, quite significantly, to the point where eating anything at all was agony. I thought maybe my ulcer had it come back for some reason – perhaps the stress of all of the socialising over Christmas, being more adventurous with food, drinking alcohol (albeit not much), along with the devastating news about my friend’s son – I reasoned that all of these things could contribute to a flare up. I persevered with eating, but the pain became increasingly worse and my mouth became so dry, it felt as though the inside might crack.
As it was still the holidays and it would have been difficult to get an appointment, I decided to investigate by taking a good look around my mouth. I noticed underneath my tongue, the seam that attaches the tongue to the bottom of the mouth (I’m sure it has a technical name, but I’m afraid I don’t know it) looked like it had a bunch of balloons attached to it. Running along the seam were what appeared to be tiny white crystals, sort of like those little crystal ‘trees’ you can buy to grow at home. As soon as I saw the whiteness, I self-diagnosed with oral thrush. Apparently this is very common post-radiotherapy and I have since been told that I can expect to experience this delight a few more times in the coming months before it clears up completely. This is due to my body trying to re-balance the ‘good’ and ‘bad’ bacteria in my mouth after treatment. So another lovely thing to look forward to! I contacted my GP and was given a 7-day course of treatment and I’m pleased to say that after a few days the pain subsided and the white crystals cleared up. Unfortunately, it didn’t do anything for the dry mouth, which is still very present, and I’ve now had to change my toothpaste to a special dry mouth toothpaste so that brushing my teeth no longer stings.
My sense of taste is still very up-and-down. Some days I can taste something and it’s great; the following week, the same thing is tasteless. I’m also noticing that frequently I can eat something and really taste it, but after about five mouthfuls I can no longer taste anything. One thing I can still taste is coffee. I have always enjoyed a coffee in the morning, but I’ve never been a fan of flavoured coffee or creamy, sweet coffees. However, because these have strong, distinctive flavours, I am finding myself surprisingly drawn to these sorts of drinks – my current favourite is the Starbucks Toffee Nut Latte, topped with whipped cream. These are pretty dangerous things to get hooked on I think! But in a world where most food is bland, it’s so nice to be able to enjoy a strong flavour. Before treatment, I would have opted for a cup of tea and a piece of butter-slathered toast any day, over a coffee. But sadly tea now tastes like dishwater, bread is impossible to eat as it absorbs all the moisture in my mouth, and I can’t really taste the bread or the butter, so all in all my old favourite ‘tea and toast’ has become a very disappointing experience.
On a positive note, my hair has finally started to grow back! I hadn’t realised quite how much I had lost until it started to grow again. If I pull my hair into a ponytail it looks really quite odd, as though I’ve had an undercut that has started to grow out. But I’m happy to have it grow back, I’ll just avoid putting my hair up for some time!
I'll finish with this gorgeous photo that sums things up pretty well at the moment - blue skies, rain clouds, a rainbow - and of course a dog!
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