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!