Hi all

Hope you are all well

I had my first review on Wednesday ... no results of my tongue biopsy yet, but they did not appear that bothered about it

Lost a bit of weight this week as the biopsy has really cause havoc, worse than the original ulcer, but now i have been prescribed Muguard .... which is a premiership bonjella apparently

The food or lack of it is really getting on my nerves now but i think that more down to me wanting everything to come back faster than it is at the moment and as i was told at my review " you are only 7 weeks out of treatment so dont expect too much just yet" ... true words i suppose, but its been 3 months since i have eaten a proper meal and i include the love cheese and pickle sandwich in that ,,, and i am beginning to miss it ... i think its getting to me mentally now

Forget being starved for two week on Im a celebrity get me out of here ... try this game for a laugh ... or perhaps not really

Anyway i now feel like Dr who as I was told that the pains and sensitivity that i am feeling on the right hand side of my face are the nerve ending regenerating after being damaged by the radio therapy ... did any of you have this

Anyway I hope you are all well ,,,, don't think i am going to reach my goal of being able to taste Christmas dinner but 10 weeks still to go

Vatch, you may well be able to enjoy some of the Xmas dinner mate. Just treat eating as a task for now. Calories in and swallow reflex excercised.

At last some good news this week

Got the results back from my tongue biopsy and all is fine, I just have an ulcer/radiation burn on my tongue that is not healing

2nd bit of good news is that now they know what it is i have been prescribed some fake saliva spray that should help moisten my mouth and help the ulcer heal.

On the down side this week, because i am not able to eat and am relying on the milkshake via my tube to keep my fed, my weight is on the slide again... I am now dipping under 13 stone which i have not seen for 25 years or more .... it's a pain nothing fits and i am loathed to go by something as at 6'3" I am not expecting to stay this weight once my taste for a juicy burger comes back

How are you all anyway ... all good and coping i hope

I've been watching a lot of the cancer stuff on tv this week and it's made me realise what i've been through. I think at the time i did not think about it ... i just did it because i had too ... so it's stirred up a lot of emotions that im not sure i have dealt with ..... but i will do in good time ...onwards and upwards

It's funny though as i watched kids in need and the comedy charity shows but stand up to cancer I obviously have more a connection with and I am not afraid to say that i did share a tear on all of those stories ... i suppose once you have cancer you have a bond with all those that have it too ....strange and difficult to explain ..... perhaps its been an emotional night for us all ... not just us but all those that have been through it with us too

Im getting boring now so its deffo time to sign off

Stay well you all

Vatch

Vatch, keep plugging away kid

Hi all how are all doing ... tickity boo i hope

Well I am still struggling with the ulcer/radiation burn on my tongue, but i now have 3 differing remedies for it.

First one was a synthetic oral spray, that did not really work

I am just over a week at trying the second Caphosol A&B and there is a slight improvement but not much. I will give this another couple of days and if it's not working i will try the third

The third being Gelclair, not tried it yet so can not comment

My weight is beginning to dip again and for the first time in 25 years I am under 13 stone .... it's not a healthy look for me

Because of the ulcer I am still relying on the PEG which is annoying because i so want to get rid of it so i can get away, but they wont take it out until i have stopped using it for 21 days and there aint much chance of that at the moment.

Anyway I still have limited to no taste at the moment so not much point in going away until some of that has returned.

So as I started off how have we all been ... good i hope

Vatch good to hear you buddy. My weight continued to droppost treatment . When you get rid of the peg I think it will help mate. Ive been to London with kids today around the museums - and brick lane for a curry! This will be you soon mate!

Vatch,

Out of all the medications I was given I found Gelclair to be better than most. The best stuff was Oramorph but the consultant wasn't keen on me taking that for the ulcers (sledgehammer - nut situation), it worked fine though!

Stick with it mate - you're on the home straight.

Simon.

Hi Simon and Gary... glad to hear you are doing well

Gary I must have missed you as spent Monday and Tuesday in London with the family, we only did the Natural history Museum this time and that knackered me out

It's amazing that after not using my muscles for four months how week they have ... I need to start to build them back up as after an afternoon walking round the Museum I was totally wrecked .... Any tips boys for building that stamina and muscle back up?

Simon thanks for the infor on the ulcers I have been given two solutions to try and battle the ulcer Caphosol A&B , which i have been trying for about 10 days now and noticed a slight improvement then it stopped. The other one i've been given is Gelclair, so I am now going to start that for 10 days and see how i go.

stay well all

Vatch

Hi Vatch (and others on this thread who unknowingly have given me so much support over the past few months)

I felt compelled to respond to your post as we seem to have been in a similar place.  I finished treatment in early July, spent the first two weeks improving slightly and then wham I had a horrible time of it until about two weeks ago when things started improving.  I had my Peg taken out on Monday which did seem like a significant milestone.  However, I am still on the milk shakes (high calorie Resource 2kcal fibre in an attempt not to lose anymore weight).  I have radiation burns and a persistent ulcer on one side of my tongue.  My teeth and gums still bother me, particularly by the evening, but I do feel at last that I'm beginning to make progress.  I can eat soft, sloppy or slippery creamy food though veggie soups are working out well. I used Caphasol regularly over several months (you can use it up to 10 times a day I was told). I felt it helped but probably rinsing with my own saline solution has been as useful as anything. Gelclair helped for a while earlier on.

I only managed to start eating anything by anaesthetising my tongue first with xylocaine spray, aspirin gargle or Instillagel.  They are only topical pain killers and don't last for that long, but they certainly helped get me started.  I am allergic to morphine and morphine based pain killers (like Oromorph or oxycodone) so it has been a very tortuous experience on paracetamol and ibuprofen but I can see the light at the end of the tunnel and I am sure you will start to soon too.  This is the third cancer I've had (all unrelated) and I can fully empathise with you over the emotional connection one has with other cancer sufferers.

I wonder if you or anyone else on the thread read the Telegraph's article on new immuno treatment which looks good for future head and neck cancer treatments.  It makes interesting reading.  Here's the link http://www.telegraph.co.uk/finance/newsbysector/pharmaceuticalsandchemicals/10883606/Race-to-make-the-drugs-that-trick-cancer-into-being-cured.html.

Best of luck.

Lucia