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!