Mouth Cancer/Head & Neck Cancer

Hi StillinShock and welcome. So sorry to see you here.

I had 30 sessions of RT for base of tongue cancer and I'm now three years clear.

By the end of week three I couldn't swallow. I had a nasogastric tube in place for 8 weeks and it saved my life. I was fed by pump through the night which took the pressure off having to constantly put food down the tube through the day, and allowed me to play with "food" without having to make sure I "ate" enough. Getting enough protein and calories in helps the body heal and keeps energy levels up 

It is a really rough treatment but the upside is that it works. Can you make sure that your husbands pain relief is adequate and that he takes it by the clock. I was on long acting morphine twice a day with Oromorph five times a day and paracetamol four times. It took the background pain away enough for me to plod through. My CNS always encouraged me to have a little gentle exercise, even if it was just a turn round the garden.

Oh and I nearly forgot. Laxatives.....opiates are badly constipating. You HAVE to take them.

I also had Caphosol and Gelclair to soothe the mouth (you can use Gelclair neat on his lips), Difflam to help numb and clean which I sloshed around my mouth fifteen minutes before trying  to swallow anything, and Antacid Oxetecaine which is like Gaviscon with local anaesthetic in it. That's even better than Difflam and you slosh and swallow that.

Diet ginger ale or soda is quite good at loosening the sticky mouth he is going to get as his saliva thickens and bicarbonate rinses help too. Some people had a nebuliser move the mucous but I managed simply steaming my head over hot water a few times a day. A humidifier by the bedside might make nights easier too.

It's a day at a time and he will get through. Do make sure his radiographers know how he is feeling. They can sort out what he needs with more pain relief.

He will get there and life is good at the end of it. RT has a residual effect for two to three weeks after he finishes but by six weeks he will be quite a bit better and by 12 he'll have turned a massive corner.

Stick with us. There's lots more help advice and support here. No question is daft and no rant unsupported.

You can both do it.

Best wishes 

PS. I know it might be hard but encourage your husband to do his mouth and jaw exercises if he can and if his team say it's OK to do. I did mine religiously throughout and still, three years later, do them once a day

Hi. I had 35 radiotherapy sessions and 2 x10 hour chemo. Whst your husband is going through sadly is par for our type of treatment. There us light at the end of the tunnel. But it’s baby steps thst get us all there. Pain relief nutrition and hydration is vital  I was fitted with n g tube end of week 3 and had it fir 6 weeks in total it was a lifesaver for me. I couldn’t cope with night feeding I used it little and often during daylight hours.  Everything went via the tube. I slept a lot in between hospital appointments oral mouth care. My blog below may help. 
remember the treatment is cruel but end result scare giid. I’m 3.5 years post radiotherapy and riding my bike over in Spain on holiday. Not bad for a 65 year old. Dani has said about psin and constipation already. 
ask any questions Hazel 

Hi StillinShock and welcome.

Can't add anything to what Dani and Hazel have already said.

I was diagnosed with base of tongue cancer in May 2018.  I had robotic surgery and a neck dissection followed 6 weeks later with radiotherapy.

There is definitely light at the end of the tunnel.  It can be a hard, slow slog and it requires a lot of patience to get there but your husband can do it .

You'll find a lot of support and advice here so just shout if you need anything.

All the best.

Linda x

Hi Stillinshock,

Sorry to hear about your husband. Nothing to add to the helpful advice already provided. There sometimes seems a lot to remember to do and particlarly when your husband will feel dreadful. I wrote a ToDo list of daily actions to prompt me. In addition I kept a journal to note how I felt and for questions to ask at the reviews. Treatment is tough but worthwhile and the journal helped me to monitor my recovery.

All the best for the remaining treatment.

- John

Hi sending you love .I know there a long way to go but this journey can be worth keep hope and patience with it and yourself.