Hi all
I have just finished a 6 week chemo and radiotherapy treatment for my tonsil tumour (plus 3 lymph nodes). It seemed to go well - I was able swallow the whole way through and didn’t have to rely too much on painkillers beyond paracetamol - so I wanted to share what I did, in case it was helpful to anyone else. I am 51 years old.
The first thing I would say is: listen to your doctor, follow their advice and guidance as rigorously as you can, and ask them any questions you have. Don’t rely on message board posts (such as mine!) if it contradicts anything your doctor said – everyone has specific needs that only your doctor will know best.
Pre-habilitation:
There is comprehensive information from the NHS and cancer charities (McMillan and Cancer Research) about how to get fit before treatment. I followed this info, doing lots of exercise (starting slowly and gradually increasing), allowing for some days of rest for the body to re-build muscle.
Likewise there is a lot of dietary advice from the same sources that I followed, making sure I had enough fruit, veg, protein and carb, and cutting down on sugar, processed foods and saturated fats.
I wasn’t drinking much alcohol anyway, but I stopped entirely. I drank plenty of fluids but avoided tea or coffee.
Outside of the ‘tried and tested’ advice from the NHS and cancer charities, there is a lot of info out there suggesting some foods can reduce tumours or help with cancer spread – but the doctors I spoke to said there was little evidence to corroborate this. So I stuck with the official advice, ate balanced meals and increased fruit, veg and nuts portions.
I lost a fair bit of weight in the weeks before treatment started, mostly through cutting down on snacks and sweet foods. I got to a weight that I was happy with, and later during the treatment I was glad that I had shed some pounds prior to treatment, as losing a lot of weight during the treatment may make the radiotherapy mask a little loose. A healthy weight is also easier to maintain when eating becomes difficult.
Treatment:
During the treatment I kept eating healthily and exercising.
Diet-wise foods gradually became more painful to swallow and the whole mouth turned into an acid detector, so unfortunately this limited the range of foods I could eat. My go-tos became cooked chopped spinach, scrambled eggs, soft tofu, purreed cauliflower or broccoli, and orzo pasta, all doused in lots of olive oil. Soft and bland – that was the theme for a few weeks.
I had been religiously avoiding sugar, having read that sugar contributes to cancer cell development, but the dietician busted that myth – plenty of foods such as bread and pasta get turned into sugar by the body. In fact they said sugar can help give your body some much needed energy and maintain weight during treatment.
I kept eating and drinking by mouth, as the doctors said this would speed up recovery. The throat was really tight in the mornings, but a warm glass of water and doing the swallowing exercises recommended by the speech therapist helped untie the throat. I never lost the ability to swallow and only really used my RIG tube on one day, as I was getting bored of drinking the supplements.
I brushed my teeth, did salt washes and used the prescribed mouthwash four times a day. This really helped with the ‘pasty’ feeling in the mouth, and the acidity that develops after meals (which gets painful due to the whole mouth sensitivity).
A drink that I found really helped too was carbonated water. It seemed to help clean and keep the mouth fresh.
Exercise-wise I did slow down a lot, but kept active in terms of walking, going shopping, playing with my son etc. I would “listen to my body”, as they say, and take a nap whenever I felt like it. So it was a funny combination of trying to stay active and also getting lots and lots of rest. I didn’t push myself too hard when I went cycling or did some yoga. I found yoga seemed to help getting blood flow to the neck and preventing the head and jaw from getting stiff.
Skin:
The radiotherapy team seemed surprised at how well my skin did during treatment. I don’t think I did anything unusual though. I started moisturising the neck before treatment started, but I only moisturised one side, not realising that the rays would go through the neck and affect both sides. During treatment I used the cream that I was prescribed, and also used one of the recommended moisturisers. That seemed to keep my skin fairly smooth up to the last few days when it started blistering and crusting up over a small area.
Overall the side effects increased very gradually, which in a sense was good, as it allowed me to get used to them. The side effects seemed to decrease after treatment at roughly the same speed as they appeared. I was able to have my RIG removed 5 weeks after treatment ended, although I had been eating 3 meals a day after two weeks, but the doctors preferred being cautious and see some weight gain.
My taste buds recovered enough for me to enjoy eating about four weeks after treatment ended, and even though they’re not all there yet (7 weeks post treatment), I can taste most foods and flavours, which has really helped with appetite. The taste recovery is very gradual – not a sudden burst of flavour.
I hope this is informative to those taking the same treatment or about to. I would just mention again that what worked for me may not be suitable for everyone, and that your doctor knows best the details of your personal circumstances.
Rob
