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!

Recovery - end of week 6

I have finally passed the six-week-mark post treatment. It is amazing to think it has been six weeks, because it feels like such a long time ago that treatment ended. Given that’s also the duration of the treatment itself, it makes me think that I – and anyone else going through this – must be made of steel because that is a LONG time to endure daily burns to your body.

Recovery has continued to be up and down over the last few weeks, but overall progress is definitely going in the right direction. I still have pain under my tongue and at the back of my throat, particularly towards the end of the day when I have been talking and eating, and I think it just all gets too much. On the plus side, I can no longer see the blister, so hopefully it is healing, but that does make me wonder why there is still pain. I definitely have a little more energy now, which is a good thing, but it also means I'm probably not resting as much as I should. Things seem to be ridiculously busy in the run-up to Christmas, with the girls having lots going on socially and at school, as well as countless appointments and calls. Some days it feels quite impossible but am doing my best to get through it. It's not helped by my sleep being pretty awful. I just cannot get to sleep easily, despite being tired, which is incredibly frustrating.

I joined a call run by Macmillan earlier this week, the one called 'Managing Cancer Fatigue', in the hope that it would give me some insight into how long the fatigue might last, how gradually it wears off and what I can do to help myself. Instead, I was greeted with an online room full of lovely ladies in their 70s and 80s who were struggling to get themselves off the sofa – very different tonight from my own situation and therefore I didn’t find it entirely relevant for me. Great that such courses are available for those who need them though.

I have an appointment next week with my consultant for a check in, just to see how things are going, so I will mention the pain under my tongue then. I think he will be pleased to see how the neck scar has healed - it's looking almost smooth now. You can see another, smaller scar underneath the large one, which is from that hideous neck drain. How I hated that thing! And I still shudder when I think about it being 'popped' out of my neck - bleurgh!

I also still have the palpable neck node. I don’t think it has grown, but equally it hasn’t gone down at all. Of course, everyone tells me not to worry about it, it’s probably nothing. But one of the many things having cancer has taught me is that no change in your body should be ignored, and while it’s probably nothing, it’s also possibly something. I think back to the day I went for my biopsy, back in May, and all my friends and family kept telling me of course it's nothing, nine out of ten people referred for cancer scans don’t have cancer. Right – but one poor sod does, and it’s naïve to think it won’t be you. It’s also naïve to think that when you’ve finished treatment and have ‘recovered’ (whatever that actually means), that you will somehow spring back into being the ‘old you’ who never had cancer. Some friends have even said my risk must now be the same as someone who never had cancer. I love my family and friends dearly, but some of these ‘facts’ are plain wrong, and it shows how little we actually talk about cancer. At six weeks post-treatment, I am nowhere near recovered. My risk of it coming back is far higher than someone who has never had cancer. And I will never be the same as pre-cancer me. This is partly because every single lump, bump and niggle over the next 5-10 years, probably even longer, will inevitably send me into a spin that it has returned. I can only hope that the worry becomes less as the years pass, and I will need to work hard not to panic about every small pain! I am sure as things become more 'normal' this will become easier.

I ate a banana for the first time in 9 weeks yesterday and it didn’t burn or sting which was great, but it didn’t taste of much. My taste is still very much hit and miss and seems to change almost daily. One day I can eat something and it is tasty; the next, the same food tastes like cardboard. I tried some red wine last week too and I am sad to say it tasted like vinegar and petrol combined (and no it wasn’t a cheap bottle!), so I won’t be enjoying a glass of red for a while yet. With Christmas approaching, trying champagne is next on my list - I'm hoping it's more palatable than the red. Certainly after surgery, it was the easiest thing to drink (okay, water was obviously easier, but I mean as a cheeky tipple!) so fingers crossed.

Wednesday was an incredibly sad day. I went to the funeral of the friend who recently passed away from brain cancer. It was an absolutely beautiful service, attended by hundreds, and finished with everyone having to sing ‘You’ll Never Walk Alone’ while waving red scarves in the church – a final cheeky joke as Martin would have loved to see Man United and Arsenal supporters having to sing that!). It was both harrowing and uplifting at the same time, and I am so glad I went. Although, I have to say, attending a funeral of someone your own age who died within 18 months of diagnosis is heartbreaking enough, but when you yourself are trying to recover from your own cancer and stay positive about the future, it sends your mind in all directions. I was apprehensive about going, partly because I thought I might break down in front of everyone, and partly because I haven’t left the house a great deal over the past few months, so it felt somewhat overwhelming to suddenly be thrust among hundreds of people and have to socialise and pretend everything is fine. I mean, when someone you haven’t seen for a while spots you, makes a beeline for you and then asks how you are, you can’t really reply with ‘well, where do I start, I’ve had cancer and then surgery and then treatment and I couldn’t swallow and my throat was burned….’. It’s just not party talk is it?! So instead, I did the Very British Thing and replied that I was great, work was fine (even though I haven’t worked for 18 months) and yes everything was going swimmingly. It might be a while before I brave leaving the house again!

Recovery - end of week 5

It has been a little while since I last posted, and I am pleased to say that yesterday marked five weeks since my last day of treatment. This isn’t a particularly significant milestone, but I feel it deserves recognition nonetheless because it puts further distance between me and the cancer. My current recovery trajectory continues to be similar to how it went throughout treatment, i.e. very up and down. At this stage, because my physical appearance is relatively normal, my behaviour is pretty normal (apart from lots of lying down) and because I am able to eat reasonably normal foods, it’s easy to think I am fine. I don’t just mean the perceptions of others. I am guilty of thinking this myself. In honesty, because I was fortunate enough to get through treatment reasonably uneventfully, I had half expected, five weeks later, to be feeling so much better by now. The reality, however, is that I feel far from normal (or I should probably say ‘back to my pre-cancer self, because let’s be honest, who is truly normal in this world?!).

For a start, my sleep patterns have gone haywire. I just cannot fall asleep at night and I find myself clock watching long into the early hours. In general, my days go something like this –

9.30/10am - wake up very slowly – the struggle is real! - lie in bed for a while having cuddles with the cat and reading the news, emails, etc., until I finally manage to force my sorry self out of bed

11am – hop in the shower and get dressed

11.30am - have a little lie down because showering and dressing has completely wiped me out

12.30pm – force myself to go out for a walk with the dog

2pm – come home and spend 1-2 hours on the sofa watching mindless TV before the girls come home from school and take over the sofa and the TV

I’m usually back up and on my feet for the evening, helping them with whatever they need, sorting school uniforms, homework, etc. I then try to go to bed around 10pm to read for a while before switching my light off no later than 11pm, but it takes me so long to get to sleep I then struggle to wake up the next day. It’s a vicious circle, and thankfully most mornings I don’t have to wake up early, but I find the constant tiredness incredibly frustrating. I am looking forward to a time when I don’t feel like this anymore. It seems it's not just me though - a Macmillan nurse called today to offer me a place on an online Macmillan workshop called "Managing Cancer-Related Fatigue'. There is also one called "Sleep and Tiredness through Cancer and Beyond" - clearly I am not alone.

When I was working, I used to dream of days like this. Days where I could lie in bed until 10am, only having to think about getting up to walk the dog and watch TV. I used to listen with envy to my friends who didn’t work, who would ask if I had watched the latest Netflix trending series. I never managed to find time to watch TV then so my reply was always no. Since having cancer, I feel like I’m living in a parallel universe compared with my previous life. And yet, I am finding it is far from the blissful image that I had in my head. Perhaps it is because I am so used to being busy. Perhaps it is because my mind is too full of whirring thoughts to be able to relax and enjoy this period of rest. Perhaps it is because I am resentful of the fact that it took cancer to force me to slow down, and therefore I feel as though this enforced rest has been thrust upon me and I did not choose it, therefore it can’t be enjoyable. It is probably a combination of all of these. I just hope I can manage to enjoy it for a short time before I go back to work!

Meals are still purely functional, and I would go so far as to say not at all enjoyable. Today, Rich bought one of my favourite loaves from a local bakery – an overnight granary loaf that is soft and fluffy inside with a delicious seeded crust. Tasting it made me realise quite how poor my sense of taste is. It tasted like cardboard with a hint of cinnamon, even though the loaf contained neither of those ingredients. Throw in a dry mouth due to limited saliva and it made it all rather unpleasant.

I’m sad to say the pesky blister lives on. There are some days it feels less sore and I get excited thinking it may be packing its bags, and others when it is agony at every bite. Certain foods irritate it more than others, but it is all still very much a case of trial and error. I tried a tiny piece of kiwi today while making a fruit salad for Lily. My initial reaction was my tastebuds doing somersaults at some delicious fresh fruit, followed swiftly by pain; an intense stinging sensation that burned underneath my tongue. I stopped taking opiates a few days ago as I no longer suffer with throat pain thankfully. I would describe it as discomfort more than pain at this stage – I still produce thick mucus and my throat has a very dry, scratchy sensation much of the time, along with pain from blister. But the burning throat has gone and I am so thankful for that. All that said, it is no small wonder that cake is still my core food at the moment! 

On the subject of cake, Lily was recently nominated to bake some Halloween cookies for a school Bake Off competition. Here's what she took - 

Dog walks are still daily, although it has now become a lottery of ‘what time to leave the house and not get soaked through’ because there has been some very heavy rain recently. Neither of us actually looks forward to leaving the house when it’s like this. Actually, since my breakfast adventure two weeks ago, I have barely left the house at all, other than to walk the dog. I like to think I am merely hibernating through the awful weather and darkness; curling up and hiding away for the winter, rather than being antisocial and avoiding going out! 

There was very mixed weather on my dog walk this morning. The sky ahead of me was full of thick, ominous grey cloud, but above the cloud the sun was trying hard to break through. It made me think about life in this context – life will always bring some cloud and rain, but it will also bring sunshine and brightness, and we need both to grow and thrive. Ideally, though, I would like to try to avoid any more of the colossal thunderstorms I have experienced over the past 18 months.

In closing, I would like to pay tribute to an amazing man who very recently died of cancer. It is tempting to use softer language, to say he lost his battle with cancer and passed away, but the reality is that it was never a fair battle and he died far too young. My thoughts are with his lovely wife, who has been there for me through my own cancer journey, and his gorgeous daughter. Rest in peace Martin, you will never be forgotten 💔

Recovery – end of week 4

It is amazing to think that almost 4 weeks have passed since treatment finished. It is also amazing how quickly that time can pass doing absolutely nothing! Weekends are starting to bring the same feeling that I had during treatment, when the lack of structure made me feel restless, but with the festive season fast approaching, I have decided to embrace the inertia for the next few weeks and enjoy my daily quality time with the sofa, as I am acutely aware this inactivity won’t last long.

I managed to leave the house for something other than a dog walk this week, which was another first as I am mostly existing as a hermit these days (see above)! I arranged to meet a friend for breakfast. For most people, this sounds easy, but the prospect of attempting something like a bacon sandwich on chewy sourdough in a public place was somewhat overwhelming, especially as I haven’t ventured out recently. I am very conscious that it sounds bizarre, as I have always been a confident person, but having been out of action for the best part of 18 months through illnesses, which started right after 2 years of Covid lockdowns, I now feel strangely apprehensive about going out, in part I suspect because I have absolutely nothing to say to someone I haven't seen for a while! Well, nothing positive anyway, which I hope will start to change over the coming months/years.

We opted for Côte, as I had spotted French Toast on the menu and thought this should be relatively easy to consume. I can confirm it was and, due to it being sweet, I could also taste some of it. The crème fraiche was coffee flavoured which is another taste I can detect, and combined with maple syrup it was a delicious breakfast. I even managed the bacon - not the nicest due to the texture/lack of flavour, but I'm told I have to keep pushing myself to eat different flavours to encourage my taste buds to make a reappearance.

I had a call with my oncologist yesterday morning. We didn’t meet in person as it would have meant the 2.5 hour round trip in the car, just for a chat, so a phone call made more sense. She was very pleased with my progress; she feels that everything I am experiencing at the moment it’s perfectly normal, and that it is now just a matter of time and patience to heal fully. She is now referring my care back to my original consultant but, of course, if I have any issues I can still get back in touch with her at any time. This whole experience has demonstrated to me the boundaries within which doctors operate. My surgeon’s job was to cut out the cancer. My oncologist’s job was to radiate the surrounding cells. Their aim is to get rid of the cancer, help you manage the pain and ensure you are physically well. No one asks how you are emotionally. Picking up the emotional pieces after cancer is very much left to the patient, and although there is a significant amount of support available from charities such as Macmillan, Maggie’s and Penny Brohn, unless you live near to these centres it means more lengthy commuting which I am not keen on at this point. My oncologist is also arranging for me to have an MRI scan in January – oh joy! Back to the Tunnel of Doom! - and they will check the palpable neck node at that time too. I have decided to hold off having any spa treatments (massages or facials) until after that scan until I know for certain, so sadly my spa time is on hold a little longer.

The fatigue is still very strong, although I think starting to ease very gradually. I am struggling to get to sleep at night though, so it is hard to tell what is radiation fatigue and what is just plain tiredness from lack of sleep (I'm not daytime napping any longer either). I looked up why radiation makes you feel so exhausted. It is apparently to do with the fact that it destroys so many healthy cells in the process of killing the cancer that your body then has to work overtime to repair and renew all of those cells. For example, my taste buds have been destroyed, so every day my body is trying very hard to repair those cells so I will be able to taste again. Yet another example of how utterly amazing the human body is.

For the first time since treatment, I listened to music on my dog walk yesterday. As you know, I listened to music every day during treatment. It was my saviour during the long car journeys; it helped me to focus on positive thoughts while wearing the mask; it soothed me when I felt at my lowest point. During the last few weeks of treatment, I used to play classical music in the car on the way home and it always sent me to sleep, but what stands out in my memory from that time is the darker part of the classical music, when the music feels heavy and threatening. So since treatment finished, I have been too afraid to listen to any music. None at all. I have done every dog walk in silence because I have not wanted to remind myself of those darker times. It felt too suffocating. Yesterday, however, the sun was shining, the cloudless sky was a glorious shade of blue and for the first time I felt some classical music would enhance my walk, so I decided to try it. I’m pleased to say it buoyed me up further and put me in a positive frame of mind for the rest of the day. I am pleased I tried it, as I had been worried that I may never enjoy music again!

My taste is now at around 30%, perhaps slightly more for sweet things (see previous post re cake!). Food is purely functional and I know I need to continue to eat in order to recover but there is very little enjoyment. I am hungry, but since nothing tastes as it should, my appetite seems to evaporate when I am faced with eating. Ready meals are still my go-to for dinner, because the thought of actually cooking something fills me with horror. If I am able to eat the family meal then I will try that, but if it is meat then I just pop my (veggie) ready meal in the microwave instead. The burning throat seems to be much better now and I can eat with just ibuprofen and paracetamol, rather than needing opiates, which is great progress. The blister is still very much present, but it no longer has the agonising sting that it did have, so I am hoping it will take a leaf out of the burning throat's book and vacate the premises.

The mucus appears to have taken on a life of its own over the past few days, however, and rather than starting to reduce, which is what I would expect at this stage, instead it seems to congregate in my throat at inopportune moments. This means I now need to carry tissues and apologise if I am mid-conversation with someone! It was custard week on Bake Off last week, and I think I would have blended in quite nicely with my inadvertent productions! Sorry, probably too much information! But important to note it in case anyone reading this is currently going through treatment too. Despite being unpleasant, it is infinitely preferable to pain so I can't complain too much. All in all, as I move into week 5 next week (week 11 since treatment started), I am happy to report that I things are definitely moving in the right direction. 

The Resurrection of The Mask

Three weeks ago today I finished treatment! The girls are now back at school, so in theory I can get some more rest during the daytime. Yesterday I had an appointment with a ‘cancer counsellor’ in Swindon, about 25 minutes’ drive away. I didn’t want to burden Rich with having to drive me, so I decided to try managing without opiates for the morning so that I could drive myself. Breakfast was agony – the blister is still very painful, and the paracetamol and ibuprofen did not even take the edge off - but it meant I wasn't too tired to drive. After eating, the pain was bearable, which confirms that I still only really need the meds to enable me to eat.

The session with the counsellor went well, it was face-to-face which was a first since the pandemic. I was worried that one hour would be nowhere near enough to explain to a total stranger how exhausted I am, having spent twelve months battling to save my daughter’s life and then six months battling to save my own life. But it was helpful to have her perspective on how cancer changes you and what to expect through recovery and beyond. Having not driven for many weeks, I was so tired after the drive that I spent a much-needed hour on the sofa before the girls returned from school and the Halloween madness commenced!

The main reason I opted to keep my mask after treatment was so that we could put it outside for Halloween, as it very much lends itself to a creepy atmosphere. I’m glad it was reused, although I’m tempted to now take a hammer to it!

The burning in my throat is finally starting to subside. Having survived mostly on cake over the past few weeks, I am now really craving fresh fruit and fresh vegetables. Sadly, most fruit and veg still sting too much due to the acidity but I am trying to gradually reintroduce them when I can. I attempted avocado again this morning and the inferno returned to my throat, so that will be out for another few weeks. It feels very cruel that just as the throat pain is gradually starting to subside, so the lack of taste seems to be worsening. It could, of course, be that the taste was never there, but the pain was so intense I didn’t really notice. Food is highly unappealing when it has no taste, so I won’t be going out for any delicious dinners any time soon (sadly). Lily made me a most delicious hot chocolate in her velvetiser today - it didn't burn AND I could taste the sweetness, so at least something is right with the world! 

I had been half expecting the right side of my neck (where the beams hit my skin) to start bubbling up once treatment had finished, as I have heard stories of this happening to other people. You think you have escaped lightly with no skin burns but, as radiation is the gift that keeps on giving, the burns can often appear weeks after treatment finishes. I am pleased to report that this has not happened to me (at least not yet!) and other than the comedy loss of hair at the nape of my neck, which thankfully can’t be seen because my hair covers my neck, my skin continues to look normal. Maybe all those days spent on a lounger in the sun (wearing SPF 50 of course) actually helped my skin on this occasion.

The mucus is still making a daily appearance, but it feels more like a moderate cold than anything more sinister so, again, in that regard I feel lucky. Three weeks later, I would ideally like to start seeing some of these things disappear completely and start to feel more like a ‘normal’ person. I know, though, that recovery can take a long time it is really important to focus on recuperation at this early stage. I continue to be very tired and no amount of sleep seems to be enough but, again, it is not as all-consuming as it was the first week after treatment, when I felt like I could fall asleep upright while walking through the woods. 

I am desperate to start planning fun activities, outings and dinners, to have something to look forward to. Things that will cheer me up, make me feel better and also give me something to aim for in my recovery. At the same time, though, I feel very apprehensive about doing this, for so many reasons - my sense of taste is still awful, the blister is agony, and I’m too shattered to get up from the sofa most of the time. I certainly couldn’t manage an evening out any time soon (plus see point re taste above). To top it all, the lymph node in my neck is still palpable and, in the back of my mind, I am wondering whether there will be another surgery after Christmas if it continues to be a problem. I certainly hope not. Given the up-and-down nature of my symptoms through treatment and into recovery, I am still hoping it will settle soon. All of this makes me very reluctant to plan anything until I am feeling more consistently well. So more rest and recuperation it is.

It is a sad evening for me tonight as it is one year ago today that our gorgeous Ragdoll Lola was hit by a car outside our house and passed away. It happened in the thick of an already difficult time, and little did I know then how much worse was to come. She had been my shadow for 4.5 years and was like my therapy cat. She was always there when I needed her, she didn't ask any questions, and she rarely left my side, especially at night. I was absolutely distraught when the doorbell rang this time last year and I can honestly say that this pain lasted for more than six months. In fact, I was just starting to be able to think about her memory without getting upset, when cancer hit me. Thankfully we now have our three gorgeous pets who give us so much joy, but I will never forget my gorgeous girl and the amazing cuddles we used to have. I still miss her so much. Sleep tight precious Lola ❤️

Acalendrical Anxiety

Time seems to be passing really quickly since treatment stopped. Through treatment, it felt as though I was grinding agonisingly slowly through each day, minute by minute, painful second by painful second, but now treatment is over, time seems to have accelerated. It is almost 3 weeks since treatment stopped. That is half the time of the treatment itself (although I can confirm it felt a lot longer when I was going through it). It is probably because my days continue to be unstructured and (in theory) I have nothing to do but focus on my recovery. I looked this up recently – unstructured time. There is actually a thing called ‘Dimanchophobia’ (or at least, according to author Douglas Coupland it is a ‘thing’) which apparently is:

 “Fear of Sundays, not in a religious sense but rather, a condition that reflects fear of unstructured time. Also known as acalendrical anxiety. Not to be confused with didominicaphobia, or kyriakephobia, fear of the Lord's Day.”

Acalendrical anxiety. There certainly is a diagnosis for everything. In my case, I’m not just Dimanchophobic, I think I’m ‘Semaineophobic’ as my lack of structure permeates my entire week. I’m also experiencing a little cabin fever. I am fortunate in that our house has plenty of space so I’m not confined to the same room day in, day out, but my eyes still witness the same scenery every day and, combined with my lack of independence due to not driving, it is taking its toll on me.

Thank goodness for the daily dog walks, although even those have become a chore now that winter is almost upon us. It’s not particularly cold, in fact, it’s the opposite for this time of year, but it is very wet. I left the house in sunglasses today and ended up completely drenched from the torrential downpour that hit me halfway through. Endless grey skies and rainy days mean gallons of mud, soggy clothing and a general feeling of dreariness. I had originally been pleased to have my treatment going into winter because I felt I wouldn’t have the feeling of missing out on the summer. Now I am starting to think that recovery in 25 degree sunshine might have been a lot more enjoyable.

I am probably feeling more worn out this week because the girls have been on half term for the past 1.5 weeks, so my recovery has been put somewhat on the back burner. Not because the girls are not sympathetic or helpful, because they are (well, at times, when reminded!), but simply because having a teenager and a ‘tweenager’ at home 24/7 is not peaceful, no matter how delightful said children may be. This has been highlighted by the fact that Rich took them away for two nights on Thursday and Friday, so I was left on my own to enjoy some rare and blissful solitude – just what the doctor ordered (if only peace and quiet could actually come on a prescription). It made me realise that is what recovery should look like. I only had to think about myself – well, myself and the 3 pets. The pets are fairly low maintenance. Thankfully they don’t shout from a different toom demanding something be brought to them or ask where the top they took off and dumped on the floor in a heap is. There are no timings or deadlines to adhere to, apart from feeding time and medicating our gorgeous but sadly epileptic cat. I could have done without this because it meant having to set an alarm both mornings, thereby removing the rare opportunity to have a long lie in. Still, none of that really prevented me from relaxing and enjoying some true downtime, which was really lovely. It’s back to school tomorrow, so I will have my days free once again, although as Rich works from home, I still don’t get any peace as I can hear him on seemingly endless work calls each day. If only I could soundproof the office, I would finally have peace, but in the meantime I guess I just need to crank up the TV volume.

In terms of my recovery, things continue to be very up-and-down. I have to say that by week three I was expecting to be a lot more stable, but this doesn’t appear to be the case. I was feeling reasonably okay on Friday so decided to push myself on the eating front, trying first some pizza and then an alcohol-free beer. I had thought the tomato sauce would burn – it certainly did after three slices – but I am glad I tried. I also thought the beer would sting but it didn’t at all. For the first time in months, I felt almost like a normal person having a slice of pizza and a beer on a Friday night.

The next day, however, I paid the price. The little blister that I have had under my tongue for some time seemed to have grown so much overnight that it covered around half of the underside of my tongue. This is so incredibly painful, and has meant a few backward steps on the eating front since Friday. On the plus side, the pain in my throat is getting gradually better. As with most pain, it feels worse last thing at night and first thing in the morning, but it is infinitely more bearable than the ulcer. 

In theory, at the moment, I seem to have an enviable 'clean' lifestyle. No caffeine, no alcohol, no meat (also no fun, but that’s another story). However, this view is missing the fact that I am pretty much living on cake and puddings! Delicious, but definitely not a long-term solution and I will need to wean myself off this soon! Fruit and veg are still too acidic, but I am very much looking forward to getting back to more regular eating. Bizarrely, water is also now tasting odd, sort of sweet and syrupy. I have heard of so many people experiencing this through treatment, but never 3 weeks later. My taste is also changing on a daily basis - cake that I could taste yesterday has zero flavour today. Recovery is most definitely not linear.