Hello Anne
I've been following your progress. You are doing well so far. I had a cancerous tonsil removed and a radical neck dissection rhs. It is 18 months since I finished my RT. Dec 22 2004.
Unfortunately you will have some shoulder discomfort for quite a while - but things do improve a lot 9 months + onwards.
Most of my right ear was totally numb to begin with but a lot of sensation to touch does return over a period of time. The ability of nerves to regenerate surprised me.
Good luck - Time is a great healer.
cheers Tony K

Hi Anne
Sorry haven't checked in for a couple of days!!

I was lucky, they avoided the neck resection and I went straight onto my treatment, 6 weeks radiotherapy with 6 weekly treatments of chemo that consisted of cistplatin (I have private healthcare through work if not it would have been 3 fortnightly chemo treatments), I think having the 6 t'ments helped not having severe side effects. Chemo days were the longest as with Cistplatin it can effect your kidneys so you are given fluids intravenously for 2 hours before & after the chemo, long old day. All the nurses & consultant said i carried the treatment very well. best they had seen! and as we know everyone is different. I actually found it harder after the treatment with swallowing and muscus problems that was definately my hardest time. During treatment I really didn't have any sickness, bit nauseas day after chemo and I really wasn't that sore with the radio, whether I have a stronger pain threshold I'm not sure!!

As I mentioned my sickness happened during the couple of months post treatment, mucus would build up where the throat was healing and I couldn't swallow and it just made me sick. If the same happens with you ask to be prescribed 'mucodyne' it comes in tablet or liquid form, if you can't swallow & have a PEG get the liquid as you can inject it.

Have you got a PEG fitted as I had that so I did'nt need to eat. If you do have one try and eat for as long as possible, soft foods, mince, mash, fish etc, taste is the biggest problem I suppose. I also didn't find it problem not eating just injecting my feeds, didn't miss food like I thought I would. I stopped eating in May 05 about 3 weeks into my treatment and restarted small bites September 05. I was was eating OK by the Christmas and really its only recently that most food is OK, have a problem with swallowing meat and can't eat without water, but again everyone is different.

A Year later I feel great, obviously still worry and I physically cannot touch my neck area, convinced I can feel bumps & lumps! But really, stay positive, let your friends & family help you and also everyone on the website is here that understand on the same level, there is only so much family etc can do.

I hope this helps a little, keep in touch and best of luck for the next few months, Chin Up, You Can Do It.
Yvonne
x

Hi Yvonne,
thanks for the info. My treatment is a little different to yours as I am having radio and chemo at the same time so I have been told side effects will be a little more severe. I have a peg fitted but I am determined to keep eating and keep channels open!
I've been given lots of swallowing exercises to do and I hope this will help later.
Keep smiling!
Anne

Hi Anne

I'm nearly a year on from my treatment and more or less back to normal. I had 32 radiation sessions and 3 chemo sessions. At the end of all that, I'd lost a lot of weight (but I was overweight before hand).I didn't have a PEG fitted - they apparently don't do that here and lived for a while on "liquid food". That was at the end of last year. Now, 6 months further, I have been declared cancer free and to all intense and purposes am 100% again. I have some hearing issues, but it was suggested that the radiation process had accelerated the aging process (just what I wanted to hear ) Food wise - I'm eating more or less everything I used too - but not such big portions anymore.
Try to stay as positive as you can. I remember having a couple of down days during the process but now I'm looking forward to a long life.
Hang in there - it does improve!

Pete

This message has been edited. Last edited by: Phinsing,

Finished all of my treatment! Have mucositis badly - it really gets on my nerves! My face and neck are very red - everybody says "you look well!" Had my down times mid cycle of treatment. Still using peg alot but can eat soup and angel delight. Just had a game of tennis and Ive had a game of golf. I just need to get out now, I don't want to be a patient any more. Going to see Stoke City play at home tomorrow- Am I ill? Hope they win

Anne W

Hi Anne
Well Done on completing your treatment.
I had bad mucositis too, I saw some nurses from the local hospice and they prescribed a very mild dose of steroid (to help the throat to heal) and mucodyne, it comes in liquid & tablet form, I injected the liquid in my PEG as it smelt disgusting and noway was I swallowing it!!! Anyway I found it a great help. So it doesn't get any better have a word with your GP.
Great to hear you are eating be it soup etc I couldn't eat anything! Good Luck at Stoke tomorrow (ill NO, just mad!). Have a great weekend.
Yvonne

Hello Anne

The side effects from the radiotherapy will improve but meanwhile unfortunately it will be unpleasant.

Yvonne mentioned Mucodyne. This can be helpful in thinning the stringy saliva that results after radiotherapy. You will find more information about it in the past discussions on Mucodyne and stringy saliva..

Several members have tried different things help with the mucositis e.g. Gelclair You will find several suggestions in the past discussions on mucositis.

Hope you find some of the suggestions there of help. Do let us know what works for you.

Have a good weekend.

Best wishes
Vinod

Hi everyone, haven't been in contact for a while,had a busy time!
I am celebrating this week! I have not seen a medical person in any form for the first time since March. How strange! I am now on fortnightly visits to see my surgeon but i will be seeing the speech therapist again. Also got to see an ENT consultant as I have a very husky voice. My speech therapist seems to think I,ve changed how I use my voice so she has to retrain me. I have also had a problem with my heart. I collapsed in my oncologist's office which caused a bit of a stir! I got referred to a cardiologist who says I have a tendancy to have a slow heart now and again (less than 40 beats permin) and have also acquired extra heart beats too. My cardiologist said I would "grow out" of my collapses as i get used to the feeling. He was right I am much better now-a month on. He seems to think i just had too much trauma and my body was reacting to it. Sometimes chemo can affect the heart but I had an echo and this isn't the case.Has anyone else
had problems post op/radio/chemo? Ive had my peg out about a month now . Breakfast is easy i still am slow at eating lunch/dinner when it involves more solid stuff. I can now drink guiness! Wine is still a no just like drinking listerine.
Have lots of functions to go to this coming month - I am good at asking for special stuff these days- but fish is usually the order of the day then a nice soggy pudding.
Hope everyone is well, keep in touch,

Anne

Hi Anne,

Great to know you're feeling well. I am now nearly one year on from radio and chemo, and my tastes are nearly back to normal, although I still use loads of butter on bread or toast, and I pour single cream over cakes, just to help them go down. I still can't manage wine, but I think I'll have to have a go at Guiness, as I would like to be able to have something to drink over Christmas. Physically I'm much stronger too, with my hair, nails and eyelashes all starting to look more as they used to. My mental ability has picked up, my eyesight has improved and my joints don't hurt as much all the time. Anyway, what I'm trying to say is that I'm sure you will continue to feel better and better as time goes on.

I found that I had been so run down for so long that I had started to think that some things were normal, so I'm delighted that they are improving. I think it's worth looking at taking some nutritional supplements, in case you aren't eating a balanced diet. I know I'm not, as fruit and most vegetables just taste revolting.

Thanks for the listerine description - now I can really tell people what it's like, as they just can't believe it when I say that alcohol tastes horrible.

Jenni- i find veg and fruit the easiest to eat!
I have no saliva so I struggle with potato and bread- My swallow has changed too so stuff gets caught up unless I chew many times and use copious amounts of water. I tend now to have several small meals. I do a lot of sport and I was a swimming coach before all this so I do know quite a bit about nutrition. I have been taking vitamin c with zinc which seems to be keeping all the bugs at bay- my kids have come home with some shocker colds!
Ive put the Christmas decorations up today so looking forward to a healthy Christmas.

Anne

Hi Anne

I find that I eat on the side that didn't have radiotherapy as this side definitely has more saliva. I still drink loads of water whilst I'm eating, and carry bottles of water with me everywhere. I put more butter on my bread than I would previously have believed possible. I also tend to toast bread, as this way the butter melts in. I know it's not healthy but its the only way I can eat it.

I don't eat a lot of beef anymore, I eat quite a bit of chicken, and if I do eat beef it's normally in something like lasagne, where it's mimced, and mixed with a cheese sauce which helps me swallow. You could also try sour cream with potatoes. The amount of these I'm eating is decreasing, but it's also probably why I haven't lost lots of weight, and I could have done with it.

Thanks Jenni, unfortunately I had radio to both sides. I have lost a lot of weight-2 stone and i am a size6-8 now. I have stayed constant since i had my peg out . I don't think i've put it back on because of the lack of alcohol and chocolate and general snacking stuff! I've never been into butter or cream I can't even stand semi skimmed milk. But I do have a go with utterly butterly on my potatoes.
I have plenty of energy and swim every day. This really helps my shoulder and arm movement- I had quite a bit of damage after my neck dissection. I have managed to adapt my golf swing and my serve at tennis is a bit hit and miss- but at least I get out and have fresh air and company-all good for the moral.
I find that I go to bed about 10 and get up around 9 so I have plenty of rest and can attack the day.
The dog gets some long walks!
I'll be busy soon got kids coming back from uni with all the usual washing and mess.
Cheers keep smiling
Anne

Hi Anne,
I can't believe you are doing so much after such arduous treatment! Well done! An example to us all.
Keep it up.

cheers Tony K

Hi Anne and Jenni
Reading your posts it seems we all have same difficulties eating.

I get the fruit and veg in my diet by making soups and fruit smoothies. If you don't like the dairy content in a smoothie you can just whizz up the fruit with a little water, if the acids are a problem try bananas and mangos they are not too bad and taste quite good together.

Take a look at the recipe suggestions section on this forum.

Isn't it good to be one year on?

Rosie

Thanks Rose I have read and tried some of them. I just get fed up of eating the same stuff!. I only finished treatment at end of August, so a while to go yet for my year!
Anne