One Year NED

Who is NED I hear you ask? When you’ve had cancer, NED is very much your friend. Or least, everyone wants to be NED. No, NED isn’t the popular one at school. NED is ‘No Evidence of Disease’ - the best you can ask for post-cancer treatment. 

A few days ago, I went for my regular check up with my consultant. I have had 6 of these appointments in the past 12 months, but this one was significant because today it has been a whole year since I finished treatment. 12 long months. ONE WHOLE YEAR of having no evidence of cancer in my body. And this, it seems, is how long it takes for your hair to grow back to a length you can tie up! 

                                        

I was reflecting on this during the car journey - the way cancer changes your perception of life. Cancer survivors no longer think of life in terms of birthdays and Christmas and school holidays, but rather of appointments/scans, the time between those appointments/scans and how long you have been lucky enough to escape the scythe of the grim reaper. I no longer define myself as a 48 year old woman (although indeed I am one of those), but as a person who is one-year NED. It becomes almost like a new identity.

The question is then how to count - which date are you meant to look at? Surgery - when the big gruesome lump of disease was hacked out of my throat? The start of treatment? The end of treatment? The first MRI scan? It seems the protocol is to count from the end of treatment, so for me that will be October 11th, a date I will never ever forget.

So in theory, today I should be celebrating being one-year NED. And don’t get me wrong, I do feel an enormous sense of relief. But with cancer, the celebrations are muted. It’s not a real celebration of being NED, because you know too well how quickly, quietly and easily it could come back. You are only ever as well as your last scan. And my last scan being almost a year ago doesn’t fill me with confidence. I talked about this in a previous post - about how most cancer survivors have regular scans, but with Head & Neck cancers it’s just a quick look up your nose and down your throat with a camera and you’re on your way. I’m downplaying it of course. There is also a neck and mouth check. But it’s very dependent upon the presence of a visible or palpable lump, so anything lurking beneath the surface won’t become known until it starts to grow and cause issues.

Pre-cancer I would have been celebrating my one-year NED with a glass of fizz, but it will more likely be a cup of tea and some cake this evening. Having a Head & Neck cancer has made me extremely wary of alcohol. I have said previously that my consultant has been very clear that this cancer was in no way caused by alcohol, it was caused by a virus, but when you have had cancer in your throat and each time you sip a drink it has to pass by the mutilated, burned site where your cancer was, well, it really puts you off. So I rarely drink these days, unless it's a special occasion.  

So the reality is that this is as ‘well’ as I am going to be at this moment in time. Physically at least. It’s quite a hard way to live life. We all crave reassurance about our health. And when you know your body is capable of growing a decent sized tumour in a short space of time, you will inevitably worry. But I’m told the worry becomes less the longer you go without a recurrence, so fingers crossed that’s true for me too.

Overall, I’m feeling relatively well one year out. I am able to eat and drink everything now, but my tastes and preferences have changed quite significantly, partly because some things are so much more difficult. I eat a lot less meat and bread - both too dry and chewy - and I tend to prefer things with some sauce. I still mostly prefer sweet things over savoury, which is another remnant of the time when I couldn’t swallow during treatment, and not an entirely healthy way to eat, but back then calories were calories and those delicious sweet puddings ultimately stopped me from needing a feeding tube.

I still have less saliva and more mucous and I don’t think that’s ever going to change now. Similarly, I know that I still can’t fully taste certain foods because I remember how they used to taste and now the flavours are muted. And I still have the very random thing where I can taste the first few bites but after that the taste pretty much evaporates into thin air.

I also still have quite significant fatigue. Having never been an afternoon nap person, I now find myself needing a cheeky nana nap every couple of days, despite my best efforts to try to stay awake through a whole day. Sometimes I get back from walking the dog and I am absolutely exhausted - again, not something I am used to but it's gradually starting to feel like a new normal. I'm told it can take 18 months for the fatigue to die down, so I am hoping my energy comes back at some point.

All of these physical aspects are annoying and frustrating, but in reality I believe the emotional side of cancer is a far steeper mountain to climb than the physical side, and that part I am still trying to work through. Being told you have cancer when you are in your 40s really does change your life (I can’t begin to imagine how hard it must be to be even younger). Of course, there have been some positive aspects, such as re-evaluating your priorities and living life in a different and more positive way. But there are also plenty of negatives, and as my consultant said to me at my appointment, ‘you have been through some of the most brutal and damaging treatment available’ so it is no wonder I feel as though I have been hit by a train. 

I came across this photo of my daughter in my mask today - it popped up as a reminder (as if I needed one) - and I am very glad that I do not have to put that awful thing on again at this moment (hopefully never, but I am touching a lot of wood here!). 

These challenges are of course minor in the grander scheme of things. I can easily live with them. The alternative - well, the alternative doesn’t bear thinking about, so we will leave that there. I am very grateful to be alive and I can only hope that the cancer doesn’t return, but in the meantime life is for living so I will be doing my best to make the most of every minute, even if that means snoozing through some afternoons!

 

6 Months Post-Treatment

Quite incredibly, today marks six months since my treatment for tonsil cancer finished. I say quite incredibly, because I feel that time has absolutely flown by, and yet at the same time, it still feels like yesterday that I was bolted down to that table, wearing that awful mask. On my dog walk this morning, the sun was shining. The sky was a glorious blue and I was very thankful to be alive. It’s amazing how cancer totally changes your perspective on life. Whereas previously I might have spent my time fretting about the smaller things, now I find I have taken a step away from that life and I see the big picture – I see that life itself is a gift, and I am very conscious of how it can be taken away from you as a moment’s notice. So as clichéd as it sounds, I am very thankful to be here writing this today.

My last blog post was at the 5-month mark and I’m conscious I’ve been quiet since then (until now of course). This is largely because I’ve been trying to just get on with life and resume a semblance of normality. Or rather try to establish a new normality, whatever that now means. I’m not back at work yet, largely because of the fatigue and other side effects. The reactions to this are varied, but many people keep asking me what I do all day and comment on how bored I must be. The answer is very much no, I’m far from bored! With two children, two cats and a dog, as well as multiple medical appointments that continue on even after your treatment is finished and a daughter who also has her own medical appointments, not to mention the epileptic cat, there isn’t really a great deal of time left in each day. Again, I hope this will start to improve as the appointments start to become fewer and less frequent.

On the subject of appointments, about six weeks ago, I woke up with excruciating pain in my neck and shoulder on the left side. I assumed I had slept awkwardly and took some ibuprofen, thinking it would go away after a few days. It did not go away. If anything, the pain became worse and spread down towards my shoulder blade and the top of my arm, making it very difficult to sleep, or in fact do anything. Sitting still was actually the worst, so I went on a lot of walks in the hope of easing the agony. I endured this for two weeks and then decided it was time to see a doctor, potentially for a referral to a physio. I called my GP who referred me immediately to see an NHS physio at the surgery. I was seen the same day, which was amazing. She did a quick check and gave me three exercises to do three times a day and said if the pain has not subsided within a week then I was to call back. I duly did my exercises, three times a day every day for seven days, but the pain did not subside. I even left it another three days in the hope that it would at least get mildly better, but it did not. I called the GP back. I must have got through to a locum who was having a bad day because she was extremely stroppy, had a terrible bedside manner and said some things that really weren’t appropriate. The telephone conversation went something like this:

Me – I’m calling because the physio told me to call back after one week, if the pain hasn’t subsided, and it hasn’t.

Doctor – I don’t understand why you’re calling. Normally we tell patients to wait six weeks when they are given physio to do so I don’t know why you’re calling.

Me – the physio told me to call back after seven days, so that is what I am doing.

Doctor – well there must be something else wrong with you because we don’t tell patients to call back after seven days. What’s your history?

Me – well, I had tonsil cancer back in June last year and finished treatment for it in October so maybe that’s why?

Doctor – oh well, that changes EVERYTHING! It could be that the cancer has spread!

Me – well, no, I don’t think so. I didn’t call because I think it’s cancer, I called because I’m in a lot of pain and would like help to sort it out. Plus my cancer was on the other side.

Doctor – it doesn’t matter if it was on the other side, cancer can spread. So we can’t rule anything out. When are you next seeing your consultant?

Me – (now feeling somewhat overwhelmed and confused and a bit lost for words) Next week.

Doctor – well you need to ask your consultant to look at this and it sounds like you need a scan.

Me – but he’s a Head and Neck Cancer specialist, not a muscular specialist, so surely he is not the person to help me?

Doctor - well if the cancer has spread then he is the person to help you so we need to have him look at you first. If he can’t help you I will book you in for an appointment with a doctor here in two weeks and you can cancel it if you don’t need it.

So that was how the unfortunate telephone conversation went with my local surgery. I hadn’t even considered the possibility that the pain could be the cancer spreading. So for a doctor to say this over the telephone multiple times was somewhat alarming, to say the least.

I saw my consultant the following week and explained to him what had happened. He was very understanding, did a physical examination of my neck and shoulder area as well as a scope up my nose and down my throat and said he wasn’t in the least bit concerned that this was the cancer spreading. I guess he knows exactly what he removed during that surgery, and therefore the likelihood of it coming back, so I felt reassured by his words. That said, if a doctor has suggested that your cancer might have come back, no matter how much you logically and rationally tell yourself it hasn’t, when that tiny seed of doubt has been planted, it is inevitable that you will worry. My consultant did say he would refer me for an ultrasound, but he reassured me that it was very much to keep the GP happy rather than because he was at all worried. And so it is that I now have an appointment for an ultrasound on the other side of my neck next week. Since I saw my consultant, and with the application of lots of gel and lots of NSAIDs, the pain has actually now mostly subsided, and I am feeling reasonably normal again. Thank goodness.

This leads me on to the question of what is normal these days? After six months, I assumed things would be mostly back to normal, and for all intents and purposes, they are. There isn’t much that I can’t now do. That said, there are still some significant physical hurdles to be overcome, not to mention the mental obstacles that stand before me. Physically, I am eating and I have gained back all of the weight that I had lost. But food is still difficult. Even though I have a very good amount of saliva (according to my doctor at least) I still find eating bread, chips, crisps, meat, and some other foods, quite challenging. I start off feeling reasonably optimistic, but usually by the time I’m halfway through I am ready to give up. There's only so much effort you can put into chewing meat, for example. Fruit is hit and miss – mango is good, grapes are hard. Apples are pretty much impossible – it feels as though they suck all the moisture out of my mouth. So really soft fruits are more my friend. Vegetables I can only really eat cooked as the raw ones tend to stick in my throat. Most worrying is that I have made great friends with cake and sugar. Lily continues in her amazing baking efforts and there is almost always a cake on the go in our house. This may sound wonderful, but when food is challenging and cake is easy, it is too easy to grab a slice of cake for energy rather than try to eat some nutritional food. I am very conscious of this and I’m trying hard to push myself to eat a greater variety of foods and keep trying with the more difficult ones, but at the end of the day cake is just so delicious. It’s hard. The struggle is real folks.

Taste also has a part to play here. And amazingly at six months my tastebuds are still doing funny things. For example, I can eat ice cream one week and I can taste it in all its creamy sugary loveliness. The next week, I can eat the same ice cream and it is completely tasteless. Like plastic. It is so bizarre. I’m also still having the experience whereby I can taste something for the first three or four bites and then after that, it becomes tasteless and again, this is where the joy of eating leaves and you don’t really feel like it anymore. Funnily enough, I never seem to get this with cake! Hmmm!

Fatigue – this is a funny one. I have some days where I feel almost normal, I am full of energy I feel like I could do anything and life feels good. And then I have days where I am so tired I have to scrape myself out of bed. When I’m walking the dog it feels like somebody has tied bricks to my legs and lifting my legs is a huge effort. This is, in part, likely related to my sleeping which is inconsistent now at best.

In terms of pain, other than my recent shoulder and neck pain, I don’t really experience much pain these days in my throat. It is funny to look inside because where the tonsil once was and the tumour of course is now a lopsided mess of scar tissue and flesh. The scar tissue means that opening my jaw very wide is still quite painful, but I have to do exercises regularly to make sure that this doesn’t become an issue (trismus). Mucus is still very much an issue too, so as well as water for eating, I always need a tissue to hand just in case.

So it’s fair to say that six months later, I am definitely in a much better place. Yes, there are still issues that will likely persist for another 6 to 12 months at least, but they are all surmountable, and as I said at the start, I wake up each day, very thankful to be alive to spend another day with the people I love.

Of course, the mental hurdle of having had cancer is a much greater one to overcome than the physical symptoms. Every niggle, every little pain, every lump and bump, and you are convinced that it is back. Over the last few months I have had gum pain, the lump on my lip, a lump on my eyelid, sore eyes, neck pain, kidney pain and a mouth ulcer. Each time, as soon as these things appear a voice in your head screams ‘it’s back!’ which you then have to try so hard to ignore and tell yourself that it’s just a little ulcer or normal pain, but it is very hard when you have been through so much. And of course, having cancer makes you re-evaluate your priorities in life which I find myself doing far more frequently now than ever before.

I will end by saying that with spring in the air and the buds forming on the trees as I walk through the woods with the dog, this gives me hope – hope for this cancer to never come back, hope that my children and my family will be healthy and well, hope for the future. Anyone reading this about to go through treatment, there is hope. 

 

5 Months Post-Treatment

It has been quite some time since I last wrote here. After all the ‘excitement’ of the January scans and waiting for results, I felt I needed some space away from the world of cancer. I muted notifications on the online support groups that I’m part of, and instead I tried to look forward – to further recovery but more importantly to a holiday that we had booked for February half term. Around the time my radiotherapy was finishing, we had decided to splurge on an amazing trip to Mauritius. It was meant to be something to look forward to after all of the stresses of the past two years. The only challenge was that it was impossible to allow myself to look forward to the holiday until after my scan results because, had they picked something up on the scan, it was very possible that I would not have been able to go on holiday, especially if I had needed further treatment straight away. Such is the joy of having had cancer. You find you are always looking over your shoulder and it makes it very difficult to plan and look forward to things, because having been through it once, you know how your life can be turned upside down and inside out in the space of just one conversation with a doctor. So after the NED results came in, I finally felt able to focus on something positive which was a blessed relief having been on high alert for so long. 

Before our trip, I had one further appointment with my consultant/surgeon in early February, where he put a tiny camera up my nose and down the back of my throat. This is called a nasoendoscopy and I will be experiencing this delight every six weeks for the next two years. The last time I had one of these was when I was in the process of diagnosis and because it was the same day as the biopsy, I was fortunate enough to have a local anaesthetic sprayed into my mouth. This time, there was nothing to numb it and while it did not hurt, it was quite a bizarre – and really not pleasant – sensation. It makes your eyes water and you feel like coughing and itching your throat. It was over very quickly though and the Professor confirmed everything looked fine, which was a relief, even though the MRI had said the same thing just 2 weeks prior.

We had a lovely holiday (apart from the cyclone!!) – I ate and drank pretty much everything, although it still takes me a very long time to wade through a meal, my taste still isn’t 100% and my mouth still gets very dry so I always need a few glasses of water to hand. Some foods are still very difficult – sad to say that chips are still in this category! Luckily there was an Asian restaurant at the hotel that served delicious food and I am still finding Asian food much more palatable, I assume because of the stronger flavours. I still can’t manage spicy foods though – I still get all the pain and none of the enjoyment so they are off the menu for the time being. Thankfully, I can still enjoy the odd glass of rose, champagne or a refreshing G&T!

I have had a few ups and downs over the past few weeks in terms of side-effects. Firstly, having had no issues with my skin at all during radiotherapy or even straight after treatment, out of the blue at around three months post-treatment, a small patch of skin on my neck became very inflamed. It was close to my ear, so very much in the radiation zone. 

I tried to treat it myself using E45, but it became progressively worse, until it was so severely itchy and scaly that I had to see a doctor who prescribed steroid cream. This eventually cleared it up after about seven days – thankfully in time to go on holiday. So far it hasn’t made a reappearance, but rather like the oral thrush, I have been warned these things will come and go numerous times before stopping completely. Similarly with jaw pain – this is very intermittent and can sometimes catch me by surprise, such as when I yawn and suddenly it’s agony.

Overall, I would say I am continuing to improve slowly, day by day, even though some days it doesn’t feel that way. Some days I feel fine - I would go as far as to say I feel pretty good! Other days, I feel completely fatigued - my energy levels are very up-and-down, which also makes it difficult to plan activities. Last week I took the dog out and it felt as though someone had tied bricks to my legs, they felt so heavy. Having always been a reasonably energetic person, it feels very strange to have such fatigue. As quickly as it came on, though, this week that seems to have gone again (thankfully). My fitness still feels pretty poor. Even though I’m still walking the dog a few miles each day, my upper body strength seems to have all but disappeared and even stirring Yorkshire pudding batter exhausts me! So next week I am taking part in a Macmillan Cancer rehabilitation program. This is a new program that they are trialling with the intention of targeting the exercises according to the type of cancer you had to help get you back on the road to good health. It will be interesting to see how that goes - I have to say I’m somewhat dreading the thought of donning lycra and appearing red-faced in public after so long!

My hair is continuing to grow back too – then and now photos below. It was somewhat odd on holiday to have my hair tied back and I was a little concerned about the effect of the sun on radiated skin, but it was fine.

The side effects that I would most like to improve quickly seem to be quite stuck, i.e. taste, saliva and dry mouth. My mouth isn’t particularly dry on it day-to-day basis, but for example, eating a baked potato or chips or bread can be quite challenging unless I add A LOT of butter (yum!). Mucus is still very much present, but doesn’t really impact on my life so that’s a bearable side-effect. Taste is the biggest loss – I made a lasagne the other day and it just didn’t taste anywhere near as good as I remember. It wasn’t unpleasant, and I could taste it, but it was just ‘muted’ – hard to describe but I think those who lost taste during Covid would probably understand! You would be forgiven for thinking if most foods taste bland, then I must be struggling to keep my weight up now. Fear not! My darling daughter has been churning out these sorts of delicious treats for some time now, so it’s coffee and cake every afternoon for me these days!

And thank goodness for the delicious cake, because having returned from a much-needed holiday and having had a therapeutic dose of warming, soul-nourishing sunshine, we are now back into a full-on British winter and it feels like it’s time to go back into hibernation! The rain, sleet and snow feel endless. Someone needs to tell Mother Nature that the daffodils are out, the snowdrops have been and it really now should be spring!

3 Months Post-Treatment

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! 

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!