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 ❤️