Week 7 advice

Hi Marwari and well done on getting through. Your RT effects peak in another couple of weeks so you have a little way to go to turn the corner. Your neck should be much better in a week or so.  I haven’t heard of Flaminel. Lots of people with open neck sores use Flamazine 

it’s wonderful that you are even managing to eat at all. Chase your food down with a warm drink. That might help. Lots of people get nebulisers but I managed with once or twice daily head over a steaming bowl. Lots of spitting the horrid thick mucous up too. A humidifier by the bedside can ease the feeling at night. 
I must admit I couldn’t care about food for six months. I just ate. It all takes time. Most people suddenly feel much better by twelve weeks. 
Hope that helps. 
Keep going. 

Hi Marwari. Well done and now welcome to recovery. Dani has said everything. My neck was burned snd weeping I was given a polymem bandage to wear you coujd ask your c n s nurse ? But give it another week don’t pick the brown bits of skin they will fall off. Im 3 years post radiotherapy snd use factor 50 every day on it winter included. Appetite fidget if just eat to live but live to eat. Took me a good 6 month to hav e any interest  in food. Yiu May have a period where one week you can eat something then the extra week try it again snd no way can you eat it. Just leave it and try a few weeks later. I was prescribed carbusistine for the mucus jury’s out if it helped or not. I did nebulise fir at least 3 month up to 5:6 times a day. Once the mucus goes you may get dry mouth done prepared. 
Well done Hazel  

Hi well done you are on the road to recovery it takes a few months sorry to say tastebuds takes months and I mean months neck will heal in a few weeks please be patient with yourself best wishes  x

Well done Marwari. The recovery is underway!
I was given Flaminal gel for my neck burns, which was very messy but worked very effectively. As for eating, yes it was hard work but I used to make Ready Brek with half full cream milk and half Fortisip and then add double cream to keep up the calories. Ditto custard. For a while that was all I could eat.  I couldn’t taste it of course but it helped keep my weight stable. I remember all sorts of things going on in my throat at that time, including gagging, and eating became a real chore.  However, it will soon begin to feel better once the RT starts to wear off and you get over this hump in the road, which will be very soon. 
Wishing you well, M.

H

Hi Flowerhen. What a lovely name ️

Welcome to the community. How can we help you?  
No question is daft. There are plenty of really helpful people here. 

Sorry that was a bit short

Hi Marwari

Great that you are through the treatment, I found the lowest point was about 7 to 10 days after finishing radiotherapy. Flamigel was the best cream I used, the district nurses recommended it rather than the oncology team and it was very soothing.

At this stage I would carry on using antiemetics , I had thought I wouldn’t need anti sickness meds after chemo but  nausea seemed to come back towards the end of and following radiotherapy. Ondansteron was the best.

When  my mouth was very sore especially if I woke in the night I found sips of milk helped.It seems to last longer than taking sips of water. I hated the horrible thick mucus, it will improve  I didn’t find steam helpful but I could manage a cup of tea and the warm drink seemed to work to loosen it. It also made me feel a bit more normal I love a cup of tea!  Then one day all the saliva seemed to go and hello dry mouth. Eventually I stared using Xylimelts and gel after reading  about them the forum and that’s helped a lot.

So keeping going , things are going to improve soon.

Beesuit said:

Welcome to the community. How can we help you?  

Ah. My memory is failing me. Hello anyway. You have been here before. I feel a real twit! 

Hi Marwari,

I used flamigel, but when the skin broke was told to switch to polymem rolls - slightly dampened and a clean one each day. It stopped to maddening itching. Once it started healing I went back to flamigel then aveeno moisturiser. You can barely see anything now.

Steam only helped me so much. I felt like I was drowning in it, my sinuses were awful too so I was told to nasal douche. Stopped the blockages getting stuck around soft pallete which made me feel / be sick. Best check with your team though before trying that. 

The food and appetite will improve, just at whatever pace your body dictates I'm afraid. I'm 7 months on, can eat ok but my appetite is reduced compared to pre cancer, I just shovel the calories in or I feel light headed on days I don't fancy eating much. 

Be patient and kind to yourself at the moment. It's really easy to feel frustrated if recovery feels slower than you expected. You'll get there 

Take care, Ronnie 

Your advice has been so useful. I am using flamazine for the burns now, it has been so effective. I am trying to be patient with the eating, hopefully over the next few weeks I will see some improvement. I am dreaming of food ! I had my Covid booster so am hoping to venture out more to find distractions from myself. Thank you all x