I just want to outline what Ive been through to ensure new patinmets realise that theres light at the end of the tunnel.

I had 20 fractions of radiotherapy finishing on 14 Dec. Developed minor burning of neck / face towards end of radiotherapy, thankfully it cleared up quickly with the flamazine ointment. The worse problem was the mucousitis that began in the 2nd week and went on until 3 weeks post treatment. I found the use of a facial steamer very beneficial to reduce the mucous though I used one that had an openening for mouth and nose to minimise the potential of burning any area exposed to the radiation. Sleeping was problemmatic as I had to sit up right to reduce the chance of mucous going into my lungs, however the fact that I had to constantly remove the mucous meant that I got little sleep for a week or two.

The chemotherapy was not a problem (carboplatin X2) - little effect from this - some nausea / acid but controlled well by medication.

Tiredness has been a problem - but I just slept when I my body wanted me to.

I was able to swallow (small sips of water) throughout treatment and didnt experience any pain until 3 weeks post treatment - when I began to have a sore throat and ulcers on my tongue which were really sore - now easing off (yeah !).Im now feeling stronger, starting to eat small amounts of soft moist food. The PEG has been a god send as it makes feeding easier and one thing less to worry about. My oncologist said that I will probably be removed in the next 4-6 weeks - so I will have had it for about 4 months - not had any problems with it at all.

Of course - I have to wait now to find out if the treatment has worked - so mentally I still have problems - but you gotta take it one day at a time.

Remember - you can get through the treatment


best wishes

Gary

Hi Gary

Just read your postings, you are doing really well.

Good on you mate


Tony

Its now February 2009... so far so good. Had a PET/CT scan in March 2007 and in Nov 2007 - both thankfully were negative. I now have 2 monthly ENT reviews - the usual camera up the nose and down the throat, clinical examination of neck and throat etc. Im having a few dental problems now (always had good teeth prior to radio/chemo). Still no or very little saliva - so I drink a lot (water that is - alcohol dries me out even faster !!).

But all in all relatively happy - apart from the fact that I cannot get any life insurance for mortgage protection, which I would like as myself and my wife are buying a house.

Cheers

G

Hi Gry, Nice to hear your doing well.
I could not have made it without my peg I was so weak after the Radiotherapy and when I lost part of my toungue even now after eaat with a Teaspon, Tried dessert spoon just cannot do it
Light at the end of the tunnel yes im still here abeit very different mentally and physically from my op in 02.
You have to belive it gets better and try not to think of the maybe.

PAUL