Hi Lynne, I'm just down the road from you in Edinburgh. Welcome to the forum. Like you I didn't find it until I was through the worst but it has been a fantastic help since. I am now 9 months out from a very similar Dx and treatment as you and I was having similar experiences as you at about the same stage. My main problem was sores in my mouth and boney bits from where I had teeth out which made my tongue sore when I moved it against them! Plus lack of appetite, taste and swallowing problems.

Sorry to not have reply sooner but I'm only just back from 3 weeks holiday, driving round Europe and camping. So yes things do improve, but it is at snails pace. I am very proud of myself because I managed to keep my weight static while on holiday (without my juicer and magic bullet blender, which have been my best friends in the kitchen over the last 6 months)though I only managed to do this by additional chocolate (only 70% or more cocoa and melted in the mouth with a hot drink) and beer! Going through Belgium was very helpful as they make fantastic beer and chocolate.

But back to the bad times, which are now fading from my memory, to respond to some of your queries.

I didn't find the morphine particularly helpful, as my pain was as a result of eating. The mouthwash that I found helpful was Diflam (Benzydamine hydrochloride)which I got on prescription. Would gargling that get to the sore areas in your throat? Could thrush be causing your pain? I had severe thrush through my treatment which took ages to clear. It could explain why the pain has got worse.

I had a RIG (similar to a PEG) for 5 months which I found very uncomfortable but it did stop me losing too much weight. I was prescribed Fortisip feeds which I started taking by mouth rather than tube at about 3 months. I still need a couple of bottles a day at present to keep my calorie/protein levels up. They are pretty disgusting but that motivates me to getting off them as soon as possible. The first fluids I managed other than tepid water was an infusion of ginger root and honey. My mainstay food to start with then and still is now is porridge, with a chopped banana cooked in it (I read your post re bananas being a problem but cooking them helps a lot), to which I also add: blueberries, creme fraise, honey, ground flaxseed, ground almond, ground hemp seed. you can make as thick or thin which ever is easier by adding milk. Next I moved onto juicing fruit and veg which I still find much kinder on my mouth than bought juices. Melon gives very kind juice (leave the skin on when you juice it to get the nutrients under the skin) as it stings a lot less than other fruits. Nectarine juice is also good. I usually mix 3 fruits. It is well worth getting a good juicer. Juicing means that I know I have got a good range of vitamins and nutrients as I can't manage salads or cooked veg (though well steamed carrots were good quite early on). Adding milk or yoghurt (probiotic) to the juice can help neutralise the acid. I also use a magic bullet blender to blend avocado and banana and make smoothies.

Once my mouth sores improved I had to deal with the very dry mouth (my consultant always comments on how 'very' dry my mouth is so I quess it is worse than some people). I am learning to live with that. I always carry a small water bottle, the type that runners use, with me and some Biotene gel. This has got easier as water no longer tastes disgusting. Now my main problem is that anything more solid than porridge, soup or yoghurts, like bread, gets stuck just about where the tumour was. In fact today I have just been for a videofluoroscopy swallow test, as David described above. I still have to go back to see the video and get the exercises but the speech therapist can see that the muscles around the tumour site are weak and not squeezing the food down well enough. So at least I know I can do something positive to improve this, and David's post above is very encouraging. I also have worried that I caused the problem by not eating and only swallowing water for quite a few weeks, but throughout my checkups the speech therapists where happy with my swallowing. I am sure that my problem is due to radiation damage to the area around my base of tongue.

I had my 'baseline' CT scan at 3 months. This was thankfully all clear. The protocol at the Edinburgh Cancer Centre seems to be that I will not get another scan unless there are indications of problems and the scan will be the baseline to check against. This makes me a bit nervous as the relief of a clear scan is very reassuring. The reasoning for not having routine scans is that they don't want to add to my radiation overload any further if not necessary. I do get 6 weekly checks with the nasal camera.

I hope some of this might be helpful to you. But my main message is that it does get better so don't get too despondent. Please feel free to send me a PM (personal message) I would be happy to chat on the phone if you wanted to chat. Sally