Hi Liz,
I am also in the UK, North West and am about to start week 6 (finish a week today, hoorah!) of radiotherapy and weekly chemo. I had a bilateral neck dissection & free flap surgery at the start of December -Radiotherapy/chemo began third week in Jan. I have followed many postings here and carefully read all of the advice, invaluable. However, as everyone says, we all respond differently to the treatments and in many respects, mine has passed okay so far. I hope that the journey for you and Robin will be as smooth as possible. My own experiences may not be comparable, but...
I have, so far, had 22 treatments to each side of the neck, mouth and throat and for the final 8 treatments, just each side of my face. As a result, the neck is now a little sore post radiatin, but not relly burnt. I wake up several times in the night to plaster myself with E45 cream and also use Radiance Gel which I bought on-line (Bristol Cancer Centre) very soothing and cooling. The sides of my mouth and the neck scar are the most tender but a little Aloe Vera gel has helped the mouth. I have also been drinking a cup of camomile with Manuka Honey 15 mins before and after radiotherpay as anectdotal evidence suggests this can reduce mucositis and I believe for me it has. The flip side is that with teeth being at risk from the treatment, scrupulous brushing and mouthwashing are imperative! Christies in Manchester are trialling the use of Manuka Honey for H&N patients, so I thought it was worth a try! I have a PEG fitted but haven't had to use it and although eating isn't really a pleasure at the moment, I have taken the advice to view food as medicine and eaten what and when I can, even if it tastes of very little. To be honest the taste aspect changes day by day. Week 3 I thought I wouldn't be be able to manage to eat for much longer, but that passed and I found some savoury foods ok. Sweet taste is now lost, but I am taking Zinc as I read that this helps with getting taste back, eventually.
As for tiredness, it comes and goes. I am 36 and am not used to having to give in to sleepiness, but for the last week, I have accepted that it's essential to rest as much as I can, when I feel tired. No medals for shaking off the fatigue! That said, I have been relieved not to to be utterly overwhelmed all the time:)
I drink water as much as I can, even when not remotely thirsty, as everyone who has gone through this advised; I think it helps.
As for pain relief, I was given a liquid paracetamol solution to use 4 times a day - before eating is best - and this has been fine, although it stings a bit when your mouth is sore. Also Difflam mouth wash, watered down though, as it is quite strong. The hospital also recommend Bicarb and salt mouth wash.
I don't know if this of any help, however, good luck to you both and your family inthe weeks ahead. It does pass faster than you might imagine and you're right, posters her are so very helpful and supportive, which is great for us.
Georgia