Hi
Well today was number 20 which should have meant the countdown from 10 could begin but last week my consultant told me she was programming in an extra 4 treatments as they had found cancer cells in the bone samples they tested after my surgery. I felt really down at the time particularly as she had just given me a lecture about needing to take morphine on a regular 4 hourly basis and this means I can no longer drive which seemed a blow since i do like to be independent. However, I have now got it all into perspective - it's just a temporary thing and I just think about getting through this and getting better.
My mouth is now very sore and the ulcers make talking and eating/drinking very difficult. I also find it difficult to do the exercises with the Therabite but at least the mouth opening hasn't got any worse.
Despite taking the medication I have been given I am having a real problem with constipation. I don't feel uncomfortable but I just don't go and anytime i see any of the team at the hospital they ask "How are the bowels?"! I can't eat any fruit because it stings my mouth too much.
I have almost forgotten what it is like to feel hungry or to enjoy food. I am wondering how long before I will be able to eat again and taste things; I know it is different for everyone though.
Well at least I haven't lost any hair yet!
Best wishes to all, maggie

Lucky you getting a Therabite, I was given a load of Lolly pop sticks and told to build up to as many as I could wedge in mouth.
Joking apart, I know how painful the tongue area can be and how everything you try smarts like hell. stewed apple puree with double cream goes down quite well. porridge with double cream, infact I put double cream on everything, as it helps to get things down. During Rad, bowels over worked or just blocked. Also it was so painful to eat, I was never hungry, good thing is as time goes by things do get better slowly, but do try to get some bland stuff down as it helps. BIG BEAR HEALING HUGS

Re Hair, I found what looked like a bird's nest on my pillow one morning, well it's all grown back, and looking good.

Hi Garance
Yes I too put double ream on just about everything I can think of.
I find ready made custard - the kind they sell in the chill compartment and made with cream is one of the easiest things to eat.
Yes I know I was lucky to get a therabite - Addenbrookes at cambridge bought it specially for me which is why I feel guilty when i can't face practising with it. But the speech therapist has said not to worry too much at the moment - they'll nag me lots when the treatment has finished. How is your mouth opening now?

Re mouth opening, unable to get a bananna in, which is a bore, jaw seems to have frozen, also it does what it wants, like a clam shell suts on it's own and I have bitten myself many times.
Mouth still dry and use chewing gum that sticks to the plat I have with the four lower molars, and all food lodges up the right side of my mouth.Choclate dark bitter which I love it pure pain, and cannot eat bread as it clogs up in a ball. otherwise things are going better, one adapts to these things. BIG BEAR HEALING HUGS

Hi Maggie, I see your op was in March, well, I am 16 months on, and really feel much better, my surgeon said don't expect anything for 18 months to 2 years. I was unable to even put lipstick on, because my mouth looked like a had had a stroke.
Don't push yourself too hard, rest when you feel tired, don't forget the rice pudding, I am sure it saved me from dropping too much weight, lived on it for months.

Hi Garance and Maggie, I am 11 months on from radiotherapy, (12 from surgery. Still struggle opening mouth to any great degree, can't drink pop as it stings,found custard and double cream to slimey to get down as they clog in my mouth also the scar tissue on the bottom of my tongue makes it impossible to swallow without drinking some fluid to swill it down. found luck warm tea best as cold water tends to make the grease on the food set in my mouth. However I do make a do and can't complain.

Hi Maurice, I have managed two fried eggs with home made chips, so I am quite pleased with myself, had to drink loads of water to get it down, so who know what as time goes by. Big Bear Hugs

Yes about once or twice a week I also used to find one lightly fried egg and flat chips made from just one small potato palatable after about 6 months post rads. Even with loads of cups of tea or coca cola the potato though had to be new and waxy rather than floury like a Maris Piper and only just cooked. I also found it best to rinnse off the potato starch before cooking.

If I tried making the chips the normal way using a more floury potato it just went like glue in my mouth. By using the new potato I had more success. Everyone is different some need overcooked foods and others undercooked al dente foods dependant on how texture is of foods. I haven't had that meal for a long time since my taste/texture has picked up, but I quite fancy some little round chips tonight.

I never normally ate fried food like that, but found a lots of foods I never normally ate the most palatable, especially ones buttered up and so slippier so to speak. The pancakes in particular I like are buttery french crepes as opposed to American pancakes which are more like pikelets/drop scones really. I realise now some of these foods are the simple foods children enjoy like beans gone soggy on toast. I was never keen on them before before, but in my first year it was one of my best meals.

I agree Garance about rice pudding which kept me alive and is always useful even now on a bad taste day for sustenance. I alway have a tin in the car when we go to other peoples homes just in case I need a mini meal and found what was on offer not filling enough for what I could manage.

I also avoid honey as it promotes oral thrush if you are easily compromised as we are. I recall having oral thrush after some antibiotics and my kind sister buying me some organic honey to 'help' me. At that time we did not realise I had thrush just araging throat iwanted to sooth - until the doc confirmed it, now I can tell myself, but the honey was the worst possible thing to take for oral thrush. It might soothe the ordinary sore throat, but feeds a thrush throat making it much worse and very red.

oops and nice to see you Maurice.

Hi Pauline, thanks for the tip on honey, it is most painful, but did not realise that would be bad for fungal infections.
I have never been one for fried foods, but just thought I would try the eggs and chips; I have always loathed soggy foods and always disliked gravy and custard, but nowadays that's the only way to go. Hope to go to France soon , so I will live on oysters they go down well.
I am coping with the plate, lower jaw four molars, I used to call them gum shredders, but seems to have settled down a bit, I don't know if I should get a water pick, perhaps I should ask Dr V
have you got one?

Hi Pauline, nice of you to say hi. I have been off air as my computer broke down and i had to save for a new one. i have updated my diary and hopefully krishan will update it as I sent him this.

9 more treatments to go but some days I wonder how much nore I can cope with. The burning pain on my tongue and the awful mouth sores are making it difficult to get much liquid down and I often end up in tears struggling with a small glass of milk. I am taking morphine 3 hourly plus paracetemol but it doesn't help with the pain on my tongue and the numbing mouthwash lasts about 5 minutes. I sleep whenever i can as it is an escape but at night I often wake up with all over itching which I've beentold is an allergic reaction to the morphine so I've been given antihistamines which will make me more drowsy! Sorry to moan - it is a lousy business fighting this cancer isn't it. I also find that people don't understand what I am going through - I had lots of visits,flowers and cards when i had my surgery but this is far worse.

Hello Maggie

Many patients have found Gelclair helpful. More information also on the USA Gelclair site. You can get your doctor or oncologist to prescribe it. Hope it helps.

Best wishes
Vinod

You are right Maggie people don't understand how unpleasant it is until they have the treatment. You can tell people it's bearable and unpleasant at the same time, but only when you have it does it make sense that you have no choice, but to grin and bear with it.

Hope the next few weeks go well for you.