Recovery at Christmas

I am now into my 11th week of recovery. I had originally set myself a benchmark of Christmas to be feeling reasonably normal/well again, and to a certain extent, this is true. I do feel normal and well again. Of course, the funny thing about cancer, as I have said in previous posts, is that you actually feel normal and well when you have cancer, but it’s the treatment that makes you unwell, as has been the case with radiotherapy. I still have good days and bad days, up days and down days. Some of the side effects that I thought might have improved by now are:

• Dry mouth – this is a funny one because, compared to many people, lack of saliva hasn't been a significant issue for me. It varies each day, and while I always seem to have 'enough' saliva in my mouth, it can feel very dry at times. It is most noticeable at night when I find I am extremely thirsty and no amount of water can quench that thirst (and no, I haven’t had any wine to cause the thirst!), and sometimes during the day when I eat particular foods. For example, I used to love snacking on unsalted walnuts or almonds, but now they are like eating wallpaper paste. Obviously I have never actually consumed wallpaper paste but this is how I imagine it would be. It is as though the nuts absorb every drop of moisture in my mouth, making it impossible to swallow them without several helpful gulps of water. Bread is similar, and some biscuits too. This is perfectly normal after radiotherapy and I am definitely fortunate to have escaped the dreaded dry mouth more than most people, but it is still very frustrating at times. 

• Lack of taste is another side effect causing me endless frustration. At 10 weeks post-treatment, I fully appreciate it is too early to expect to have my full taste back, but the estimates on when it will come back range from weeks to years to never, so I’m not sure what to expect really! My oncologist had said it would take around 8 weeks. My consultant recently said it would likely take 6-9 months, although it could possibly take years. And I have a friend whose mum went through treatment 15 years ago, who says her mum had to re-learn taste again, and she now enjoys some foods she didn’t previously like and vice versa. The strange thing about taste is that it varies so much each day, which makes it impossible to know whether you will be able to enjoy a particular food on a particular day. The roasties might taste fantastic one day and then completely bland and tasteless the next. Spicy foods are another challenge. I used to enjoy a medium heat curry or some fiery nduja on a pizza or pasta. Since treatment, however, the sensation that was previously enjoyable and added to the sensory experience of eating a spicy meal is now unpleasant and hurts like hell.

• Sleep continues to be a challenge, but I am working my way through a myriad of herbal remedies in the quest for a peaceful night’s slumber. Sleep has such a huge impact on everything so it’s no coincidence that on days when I have slept well, the taste, dry mouth, pain etc are all slightly better than after a bad night. My lovely US family have sent some melatonin so I look forward to trying that very soon.

We are now in the final countdown to Christmas. The girls finished school last week, so the excitement is building! Presents are now bought and wrapped and thankfully I only have three more elf on the shelf ideas to think of! While looking for Christmas presents, I came across this little monstrosity for sale by Charlotte Tilbury (make up brand) – it completely freaked me out! Whoever created this clearly has no idea what head and neck cancer treatment is like, and I can guarantee no survivors would ever purchase anything like this. I am so scarred by the experience at the thought of ever putting anything on my face again like that brings me out of a cold sweat!

With the girls off school now, I have also come to the end of my own ‘term’, in the sense that I have no appointments at all for the next two weeks. I am very happy about this. December has been a blur, filled with appointments, places to be and deadlines – and I’m not even working. I feel like I have gone from one appointment to the next to the next, week in week out, and as all my appointments are either in Cheltenham, Oxford, or Swindon, a one-hour appointment can sometimes take up to four hours. I had a bit of a worrying situation the last few weeks because I could feel two lumps in my armpit on the right side. The lumps are deep in my armpit and reasonably close to the palpable neck node near my collarbone. I spotted the lumps around 6 weeks ago, and waited for them to go down, but when they didn’t, I decided to see my GP for reassurance, thinking she would send me away saying they feel fine. Unfortunately, she did not say this, but rather she put me back on the two week NHS cancer pathway with an urgent referral to a breast clinic. It was right at the end of the promised two weeks, so given I am fortunate enough to have private insurance, I booked an appointment to be seen sooner. Ironically, it was back at the same hospital I had my treatment, so another trip to Oxford, except this time it had snowed pretty heavily the day before, schools were closed, and I had to drive myself. I don’t even have a four-wheel drive but thankfully the roads were clear and the journey was uneventful. I saw a consultant, had a mammogram (in a very shiny new machine) and finally had a very thorough ultrasound. She said she could see the nodes easily, but she felt they looked perfectly normal and had no cancer characteristics, so there was no need for concern. Thank goodness. I sobbed with relief when she told me.

While I was there, she also looked at the neck node and measured it again. I am pleased to say it hasn’t grown at all since the last measurement was taken at the end of October, so that was also a huge relief. It doesn’t mean it’s not cancer, but if it’s not growing quickly it’s apparently a good sign. I left the hospital feeling as though, for once, the big ‘it could be you’ finger was not pointing in my direction. I only want to see that pointer again if I am to win the lottery!

Statistics say that 8 or 9 out of every 10 people sent for cancer scans on the 2 week pathway will be told they do not have cancer. Despite these reassuring statistics, most people will inevitably feel extremely worried ahead of such tests. But when you have already lived the experience of being one of the unlucky 1 or 2 who aren’t told it’s nothing, your mind inevitably wanders back to that time and the worries feel all too real. Before the appointment, I had played the scenario of being told I had cancer again over and over in my mind, thinking about how it would change the whole of Christmas, the whole of the New Year, and the whole of my life of course. And the huge unknown that comes at the start of a diagnosis, around stages and grades and types. It is an immensely stressful time. So the relief I felt when she said she had no cause for concern was absolutely immeasurable, and that, in itself, is the best Christmas present I could wish for. Well, that and a clear MRI scan in January would be perfect. Thank you Santa.

So in summary, I am looking forward to Christmas, particularly to having a break from the reality of everything that has happened over the past 18 months, and at the same time, I am feeling very apprehensive about the amount of socialising that I have to do. Having barely left the house or engaged with people for months, I am very conscious that I get tired easily, and I have days where I don’t feel like talking to anyone at all. The pain levels also increase significantly when I am socialising and eating. No doubt it will be a lot for me to manage, but we have very little planned for after Christmas, so I hope to be able to rest then.

I think that is now a wrap for 2022 from me. I would like to say another huge thank you to everybody who has supported me through this journey, by being there for me, sending me messages and gifts, and just by reading my blog. Simply knowing there are people who care has been such an amazing source of inspiration for me, and I also hope that this blog will help others who are going through this hideous treatment and give them some comfort that better times are ahead. I wish you all a very Merry Christmas and a wonderful New Year 2023.

Oh and fingers crossed I can taste the turkey and the roasties! 

Recovery - end of week 8

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.

In other news, I think I need to stop opening my post. So far this week, I’ve had a £100 parking fine from when I took Lily for pointe shoes. It’s a tiny shop on a small industrial estate and I’ve never previously paid for parking and didn’t see any new signs, so that was an unpleasant surprise. Then today I had a speeding letter for doing 25mph in a 20mph zone. Thankfully no fine, just a warning this time, but these are things I could really do without. It would be nice to receive some positive news in the post for a change.

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!