Hi Folks!
At last I have finished my treatment and am back home. It has been a bit of an ordeal, with pain control a real issue. Mucositis (?) set in quite early on and I have been living off Fortisip for a month now. I've lost a bit of weight, but could afford to. At the moment I'm not doing well with eating or drinking but as I've got through this far without a peg, I'm hoping I'll manage the last bit. I'm now bracing myself for the afterburn and wonder how hard it's going to get. RT to my neck finished a week ago and it went from a smelly, sticky, painful mess to hardly anything to see at all in less than a week - nothing short of miraculous! I'm guessing my mouth isn't going to be that easy? I'm wondering if I should try difflam - anyone else any ideas? I haven't been given much from the hospital apart from a huge supply of various types of painkillers which don't seem to help much.
Any advice for the next phase would be great.
Vicky x

well done vicky you are doing great! at that stage i was nowhere near my pc! i used difflam too though really i was using what ever was thrown at me. as you seem to have your nutrition under control and a positive spirit im sure the rest will follow suit in due course. just one step at a time. My nutrition really suffered at this stage and caused all sorts of problems so just keep an eye on it, but well done and keep going!

Well done for getting this far!
As bianconeri said- keep the nutrition up. The next couple of weeks will be hard.
Do loads of mouth/ jaw exercises so that you can open your mouth for proper eating later. Your jaw will start to cease up otherwise.
Keep smilin!

That's great news that you are home.

Pain sucks!

I hope you continue to improve.

Congrats on your progress!!!!

Hi Vicki

Glad to hear that you have finished your treatment - now you just need to give yourself time to recover (it may not be immediate). I used Difflam throughout my treatment to try and get some relief from the soreness and also Gelclair which I found quite good.

I lived off porridge (made with full fat milk), high calorie milk shakes and yoghurts for a good while after treatment finished which helped with the weight gain until I got my appetite back.

Hope you start to feel better soon.

Wendy

Hi Vicky

Congratulations and yahoo!

Julia

Thanks for everyone's good wishes, unfortunately I spoke too soon! For some reason since I've been home I haven't been in much pain so I didn't take my morphine...... big mistake. I have been very ill over the last 24-48hrs, with what I now think is morphine withdrawal. I know it sounds really stupid of me, but I just didn't see the harm in not reaching for the painkillers if I didn't need them. Anyway, it took me about 24hrs to work it out and am now back on it and my body is recovering. Very unpleasant and frightening. I am now a humbler and wiser (and weaker) person. I wish I could fast forward my life a couple of weeks!
Hopefully my next post things will be improved.
Vickyx

Hi Vicki

I think its natural to expect to feel better straight away after finishing the treatment. I certainly thought that I would, but in fact I felt worse for the first two weeks post radiotherapy!

It is a gradual recovery process - however I didn't take morphine so can't give you any advice on that. After hearing all the possible side effects, I decided not to go down that road and just relied on strong painkillers to get through it.

However, I'm sure others who have, will be able to give you good advice on the best way to come off it.

Best wishes
Wendy

Hi All!
I'm now about 12 weeks post treatment and it's been a bit uppy downy! I eventually managed to kick the morphine but even after reducing the dose by half a ml every few days, eventually I went into withdrawal for about 9 days which was horrible. Since then I've struggled to pick up and have been very tired and washed out. Had a CT scan which was fine. My appetite isn't very good, mainly because I can't taste much, but for some unknown reason at the weekend I just fancied a chinese meal. I bought some pre-cooked rice and sweet and sour chicken at Asda and just ate some rice and some sauce. Unfortunately in the early hours I was sick (sorry folks!) and due to the lack of saliva the stomach acid burnt my mouth big time. I have huge blisters in my mouth and down my throat and I think it's taken the enamal off the back of my front teeth! Couldn't even sip water for the first 24hrs and have just managed some Fortisip this evening. I'm starving! Have been tempted to reach for the morphine, but given my past history have resisted and stuck with paracetamol and codeine. I feel fine in myself except for the whole living with excruciating pain thing! My H&N nurse said it'll take about 10 days to heal, so I just have to stick it out. Anyway, apparently saliva protects your mouth and teeth from stomach acid when you vomit, which is why you salivate just before, but of course I don't have much saliva!
Apart from that am taking life slowly, as I haven't got much choice. Recovery is definately taking me longer than I anticipated, but I'm becoming a wiser, more patient person!
Hope everyones doing ok out there!
Vicky x

Sorry to hear some of the set backs you have had but glad to hear you are moving forward!! Be sure to keep hydrated - I know that was critical for my dad's recovery

Hi Vicky,

It does take time to heal, one thing I felt a bit better about eating was complan soups. They do a vegetable and a chicken flavour soup (amazon sell them) They can be made with all water or milk and water and have lots of nourishment in them. It just tastes that bit better and feels more like normal food. I just got so fed up of the fortisip smell and they helped me.

Hi Vicki

Sorry to hear you're still having a rough time. I can tell you that it took a good five months after finishing radiotherapy before I felt like eating anything much. Getting the food down physically wasn't so much of a problem, it was just not having any appetite whatsoever. Didn't even feel hungry and not being able to taste the food properly doesn't help either. Gradually I found my appetite and taste returned - I've put on two stone in weight since then!!!

It does get better, but may take time. Have you tried chewing gum for helping to stimulate the saliva? I get through so much of it I should buy shares in Wrigleys!

Best wishes
Wendy