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!