Hello you,
So I'll be having radiotherapy in about a month, which will coincide almost exactly with the school summer holidays.
Exactly what I didn't want to happen.
But then, so much of cancer falls into that category doesn't it?
So I'd like to hear people's experiences with radiotherapy - particularly to the tongue, but perhaps this thread can also become a resource for all RT head and neck.
Here's what I, in particular, need to get to grips with: how much will this knock me out on a day to day, functioning, moving and above all PARENTING level?
I host my two young children solo, although I'll be able to get help. But I'd like thoughts and experiences from other parents on the challenges of doing this while getting daily RT across the various weeks.
By weeks 4/5, will I still be able to host my kids? And how will I be in weeks 1/2 by comparison.
Thank you for any contribution you can make. I want to be forewarned and forearmed!
Hi.
I had six weeks RT to my tongue
First two weeks not much, just a tickle in the throat which got worse in the following week. Over the next weekend it all came crashing down practically overnight with large mouth and throat ulcers so bad I couldn’t even swallow water. Had been taking paracetamol for that third week.
Dietician organised me a pump feed which dripped fortisip slowly over night. I did bolus feed with a syringe for a few days till the pump arrived. It was time consuming and made me nauseous.
In the following weeks I had increasing doses of oramorph topped up with long acting morphine twice a day when pain woke me at night.
Background pain was well controlled but there was nothing that could take the pain of swallowing away so I didn’t. Everything went through my tube
Neck did burn but not badly. Used aloe vera gel straight after RT and moisturised well with Diprobase.
The two weeks after treatment end were the worst. I slept most of the time.
I managed to start eating at 6 weeks and began tapering my morphine at twelve.
From the end of week five to say week four afterwards I couldn’t parent even the dog. I was exhausted.
This is just my tale. I got off fairly easily. Some people are much better some worse.
Have they offered you a feeding tube?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
It was the base so that might explain the throat problems. Modern RT is targeted finely. You might get away with just a really sore tongue.
A word of warning. RT ulcers take a long time to heal though the pain subsides fairly quickly.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I had RT to the right side of my neck, not the tongue, but I can give a few thoughts incase it helps.
The first few weeks were fine and then I lost my sense of taste. I developed one ulcer on the right side of my mouth, not on the tongue, so I still managed to eat. I managed food throughout the RT and found, for me, it only really became a challenge in the last week as I was knackered and couldn’t be bothered as I had no desire to eat. Soft foods were easier and I drank so much water I was never too far away from a toilet.
Oral care is crucial. Folk on here with RT to the tongue will be better placed than I to comment on that but I was brushing 3 times a day and using a non-alcoholic mouthwash daily too.
I had a weekly review with a RT nurse and she kept tabs on my weight and we had a general chat about how it was going. This is useful and they will give you tips and guidance tailored to how you’re doing. 
