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.
