Hello all� Pauline is right Pikeman, it was just through sheer complacency that I choked when out at lunch. One look at my daughter, and she knew. I just took a deep breath, excused myself, and pardon the expression �boked� in the Ladies. Although it was scary, I came out looking refreshed, outwardly at least anyway.

Oramorph was prescribed to me after Radiotherapy, as the pain in my throat was excruciating. I took it only before bed, and when the pain was at its worst. Had no problem stopping at all. As I only had 20 sessions of Radiotherapy, my burns were not quite so severe, and coped with that.

I eat almost everything, but will not attempt a steak. I�m sure we all feel that after all our experiences, we could adapt to anything that�s thrown at us.

Take care,

Rosemary

Oh, I didn't go to Safeways in the end as there is a Tesco which is nearer and they had some blueberry muffins there. Really delicious and so LIGHT I couldn't believe it. Just a mini-choker with a bit of blueberry seed but now I know to beware. Haven't been to Marks for the roulade yet but got a Tesco Swiss roll which was totally awful.
Pikeman it must sound so petty to you, us females moaning about what we can't eat when you are purely liquid. I do hope that won't be for ever although you are probably used to it as long as it makes you feel fit enough.
One of my sons came over tonight when I was savouring my blueberry muffin, grace a Rosemary, said he hoped that wasn't all I was going to have for supper and then asked, interestingly, if I ever dreamed about food as I used to be such a keen experimenter and taster. The funny thinng is that I don't. But I dream about drink. Long, cool glasses of iced Baileys, and Riesling, and a nice single malt.
All of these are verboten because of my poor old tissues. So I wake up and have a slug of tea from the flask I have at the side of the bed.
And it really tastes good!
So there we are. But New Year's Eve is very dull... Ishbel

Yes the Marks roulade is made with fresh cream and a chocolate cream. You may need extra single cream to help it down. It is different from the muffins which I am so pleased suited you. It is nice to have cake and be able to eat it. See what I meant about the airy texture of the muffins. I also wish they skipped the bluberries. Have you tried stewed blackcurrants which are around now. This is IMO one of the very best flavours I can taste.

I am also a fan of FLOUR (not corn) tortillas which I lightly warm over a naked gas flame for seconds. Then fill these with mashed boiled egg, or cream cheese and chopped tomatoes or olive oil softly roasted vegetables like courgettes, red peppers and sliced red onions or a sweet version with chopped banana. Tomatoes are a fairly new eat for me. It took 18 months before I could stand the acidic taste again, but now love them they are so wet.

I have more or less given up on bread as it just sticks even with drinks. The tortillas feel like very normal food and also when out I can manage half an egg wrap which is similar as long as there is tea to down it.

Do try the tortillas as it is great to have a vehicle for foods.

No Ishbel I don't think either of you are being petty. In fact I'm quite envious that you have the courage to try the different concoctions, and that you are able to taste things.

The absence of solid food doesn't really bother me as I only have vestigial taste (sweet vs sour,salty or not). Given that I used absolutely love my food and that such enjoyment came mainly from the varied tastes and flavours enhanced by wine and knowing that I can't taste things - no it's definitely envy I feel.

Hi Pauline and Ishbel, do you think I will need this Oramorph during and after my radiotherapy. If so should I ask my GP for a perscription before I start with radiotherapy or do you have to get it from the hospital after the pain starts. Maybe Dr J might be able to answer this.
Maurice

Maurice you probably won't need the oramorph until the RT is over--I had 32 sessions and required it about a few days later. It might be a good idea to have some available foer when you need it as it is so excellent. And not habit-forming unless you like being in a Strawberry-Fields-Forever mood all the time and kissing the metre readers!
I am sorry Pikeman that you have no taste at all. That is realy rotten, especially when you liked good food. A good friend of mine has MS and this is the main side-effect she has had which she finds so distressing. I think Buddhism is the answer and then you will take as much delight in a bowl of lentils! I'm not one because I attack bluebottles and they don't kill anything. Oh well, you will just have to take vicarious pleasure in the rabbiting on about to choke or not to choke. I envy you your laidback fortitude.
Pauline--sorry for not attributing the airy muffins to you. I had another for breakfast (my breakfast being at 1pm), and along with my great big vitamin drink I feel like tackling the Friday shoppers to find my roulade. And these flour tortillas. I will be amazed if they work for me, but deighted. I picked some courgettes from the garden last night and will use them. I can't manage tomatoes. Sting too much. What I find I enjoy is a small amount of mild curry powder mixed through white sauces for blending with fish.
Kids' stuff say the Curry Club. But suits me now!
Regards Ishbel

No Maurice be guided by how you feel at the time with the pain relief.

The key here is that the pain type varies. In the beginning it is a raging sore dry throat that feels as if it is dehydrating and parched constantly. It feels as if water is being squeezed out and the tongue becomes like foreign object you are acutely aware of as if burnt by chillies. The best medicine for this is 5 or 6 pints of water a day!!! Start early in the day with water, drink 1 pint before radiotherapy. Carry water with you everywhere and get bottles of the stuff in now. I use Evian and would suggest you avoid Volvic because of the enhanced volcanic taste that gets super enhanced. Tap water chlorine taste is too noticeable when your taste buds go haywire. A dietician told me some people notice very little taste change for several weeks, but I tasted metal 10 minutes after first treatment.

Day 14 is the approx day for the sore throat from hell. There will also probably be ulcer sores on the gums. You will feel exceptionally sorry for yourself. So pamper yourself. Nystatin offers some comfort and remind the hospital that you need it. It is prescribed phrophylactically for oral thrush, but also relieves the gums a bit. Just make yourself as comfortable as possible by resting, drinking lots of fluid and being kind to yourself. Don't try to be superman and overdo things as the body need to draw on your reserves to rebuild cells. I think on the ACOR list some has said that it takes about 4500 calories a day for the body to cope rebuilding during radiotherapy. I always felt most lethargic about 2 hours after therapy.

At Cheletenham and probably other places their policy was to give you a basic pain reliever like paracetemol to begin with. Then about 10 days in as the pain became more uncomfortable and note the use of the word uncomfortable - you will be able to stand this pain, but it is not pleasant - I moved onto Solpadol. Then about 4 weeks in moved finally onto Morphine tablets as well as still taking the Solpadol (cocodamol). Solpadol is nicer to take than cocodamol as it dissolves better.

Oramorph every 4 hours was added to the night and morning morphine tablets as basically they don't know exactly the pain relief an individual needs, so they tell you to begin with say an additional 20 ml of Oramorph to the tablets then up it gradually until you can get relief. Some of this is probably related to pain threshold and also to body weight.

I was also given a nausea tablet """early""" on and needed to take Lanzaparozole for acid reflux. You can have the latter as a soluble drink - yuk or tablets that are large enough to choke you!
Your GPp probably won't be very involved in any of this until the radiotherapy is complete. But it might be worth asking for the lanzaparozole as the reflux is ghastly. Anyone else have this? I still have to take it now.

One other thing is that poor diet during this means constipation ..... Constipation is also an effect of morphine so you don't want that too soon and believe me that morphine can truly jam you up as can the solpadol with its codeine element!!! It may be worth getting liquid lactulose in from your GP or have the hospital provide it. Suppositories may become essential at some time!!!!

Some people do seem to manage to eat during it, but most land up living off milk and porridge and tinned rice pudding with added milk, yoghurt or similar things as I did - especially when it ends as the radotherapy works for some weeks after an dit is hard to relate to why you feel lousy when treatment is over. But expect to feel off colour for at least 3 or 4 weeks after.

I really hope this helps.
You can get through this Maurice. Just make sure you tell them when there are problems. So often we only mention something like constipation as an aside and they quickly prescribe an item.

See Maurice as Ishbel has said Morphine is a late drug introduction. They do not give it out until you really need it. I think we all liked it so much because a) it works and b) it takes you to noddy land and being ill in bed or slouched on the sofa gets pretty boring after weeks and weeks so sleeping the day away means you get one day nearer recovery.

Ishbel I can see the muffins have thrilled you. One of the things Marks does in their cafes (not seen it in the food section) is a lemon cream mousse filled sponge dessert which I can recommend.

Ishbel I like to slice up and boil a fennel with water and seasoning then reduce it with butter and then put a small piece of cod on top and the lid on for 4 or 5 minutes while it cooks softly not overdon. Then add some double cream and have with green beans and mashed potato. The strong aniseed flavour of the fennel is something I taste ok.
The flour tortillas work for me beacuse they are unleavened. Products with yeast seem to clog forever.

When exactly does your treatment start Maurice?