One problem with having the nasal tube is that you don't feel the hunger you might feel if you didn't have the tube feeding you constantly.

Once you get back a bit of stamina (as result of tube feeding) to go shopping for 2o minutes or less, ask if you can remove the tube. Ask if you can remove it before the next hospital appointment with the proviso they will put it in again if you cannot manage to eat. This is what I did. I saw the consultant and said I wanted to get rid of the tube but, was worried about being unable to eat and sinking again.

So we agreed I would remove it Saturday morning and then on Tuesday afternoon if I hadn't eaten any table food he'd reinsert it. Well it was Tuesday am before I even felt hungry. Most foods were not that successful in the days before - just milky drinks like ovaltine and maybe a little yoghurt. But I made myself eat a very small thin well buttered pancake that Tuesday morning. I forced it down. The difference was that by then I felt hunger. Hunger can make the job of proper eating easier. After that I knew I could live on pancakes!

If I were to do it again I'd say remove the tube on Friday for a Tuesday appointment. Once you feel hunger you will be more inclined to TRY to eat anything. It's totally painless removing it yourself, but the tube is full of black gunk so do it near a bin or sink. Once Iate normal food I really picked up, but lost weight really slowly for another 9 months.

The throat will be sore for a long time . First 3 months after rads is worst for phlegm and sore throat, but 30 months later I get oddd sore throat days that come and go and also still have morning phlegm. I slept propped up for about first 4 months as you feel you might choke on it. This is all normal Tracy. Good luck.

Your words are such a reassurance for me Pauline. I do sleep propped up as I do feel as though I am going to choke on the phlegm. This removing the tube sounds very tempting and I do feel hungry the only thing is my throat is very sore and the only thing I have managed is Chicken soup and custard (its a start) how did you cope with the pancakes and a sore throat, or did you not think about it?
I am just worried I am going on holiday in June and I don't want to take this tube with me..

Love
Tracey

The pancake was very small and very thin. I must have melted a lump of butter in a small omelette pan and cooked a very small one. I had sugar and lemon on it too. Even now I make them rather thin and always buttery. The butter helps it slip easier as does it being thin. I recall not really wanting it, but I made myself do it as the thought of having that tube in (for Christmas 2002) was enough to frighten me into doing it.

Thin pancakes can break up more easily. You can try a few ways. Add more milk to make the home made mix thinner so it just coats the pan or as soon as you've poured in some mix pour most of it back out. You can also add an extra yolk to make ita bit more nutritious.

You take very very small bites and eat slowly like a bird for months. It can take 15 minutes to eat something like half a scone with 3 cups of fluid and you'll still be eating and your companion will have finished long ago and you'll also maybe leave half on your plate. Even now I still cannot eat crusts on bread ans feel I leave half a plate of food. You'll soon think like me that people eat far too much and make pigs of themselves.

Much of this eating though is to do with confidence. Always have fluid with you before you sit down to eat. Now when we eat out my husband orders me a pint of coca cola so we don't have to keep calling for drinks. If I leave some of the second pint - so what - at least the food didn't go cold whilst I waited for them to bring another drink to get it down.

You want to concentrate on foods that don't choke you and don't worry about flavour as frankly that takes ages. So just eat small amounts regularly. Safeway's round shortbread biscuits dipped in tea worked for me, (ironically I found more expenisve Duchy shortbread TOO CRISP. For example coconut is something I could taste flavourwise by 50% early on, but unfortunately it could easily choke me with just a mouthful and still can, so I leave it alone.

When you have one of these coughing choking fits it's so horrid you are cautious the rest of the day and eat less so try not to put yourself into that sistaution. So my advice is avoid foods that can scratch the throat like celery unless in liquidised soup form as the strings can choke you as can lentils however soft you cook them. These are fibrous and therefore can scratch. The small scratchy stuff is the worst. I think Ishbel found currants problematic. Everyone is different. You'll soon learn what to avoid.

One of the earliest foods I ate was a 1 egg souffle omelette only lightly cooked inside and of course cooked in plenty of butter. I also found Marks and Spencer egg custard tarts ok although I just ate the middles not the pastry. But the pastry on these was the first pastry I did eat as it is a fairly soft. You could try things like supermarket milky bar desserts which have a better mouth factor than some NHS prescription similar tub foods! Home made trifle was also a good early food for me. If you need some protein I suggest lightly cooked plaice which is very soft if not overcooked, but it was 6 months before I ate fish and even now only eat it about every 3 weeks. However it can be a good choice out when eating. Asparagus dipped in melted butter has a distinct yet bland taste. Try it well coooked. Forget al dente vegetables and cook them well and you'll find they will go down.

I think Philip mentioned taste pall and it is the eternal problem, even when you can taste many foods again. With up days and down days.

It really does all get better and it's a slow job. But I think real food of any type does a better job to give you more stamina than packets of Ensure. Find a real food you like and if it means eating say 6 pancakes day or six bowls of milk soaked softened rice krispies a day then do that. Coca cola can also help food go down.

I also think the presence of the nasal tube give less physical room for food to go down anyway. so the sooner they remove it the sooner you have chance to work on normal table foods. The first 6 weeks after the nasal tube is removed though is tough because you expect things to taste good and well they just don't! It is a huge disappointment. You want to do all these things like eat to get better, but it's all so miserabley unpleasant with texture being more of a problem than taste. But if you can just find 4 or 5 things to live on then you'll move forward. I can only say milk and milky drinks and cream on stewed apple/plums (with lots of sugar - sorry Vinod) kept me going. As did jaffa cakes dunked in tea and portable to take out as mini meals. Cheescake might or might not go down, depends how it's made.

More recently I've also discovered that gluten free products have a different mouth factor and you may find these less gluey in the mouth. I wish I had tried them 2 years ago.

You can do it. Knowing it's a fortnightly improvement will remind you to just bear with it.

Thanks for all your advice Pauline, I certainly will put it to the test, a couple of things I have tried and seem to work is Tesco's chicken soup (not Heinz)I can manage a full bowl which I am very proud of, Tomato was too strong tasting and nipped.
Rice pudding with tinned peaches, I have not finished the bowl but having a good try at it! I agree about the cola but I have found it is better for me when the gas is out of it, I think the fizz irritates my throat still.
John made me a cheese omlette yesterday which was very tasty, but I couldn't finish it, my stomach has definately shrunk, but these are all steps forward and I am very pleased with myself.I have an appointment at the hospital on Friday and I am going to ask them about removing the tube, I am not too optimistic as my weight is still going down, but I will wait and see.
I will keep you posted

Tracey

Hi Tracy, I really feel for you, I lived on rice pudding, stewed apples with double cream, infact I put double cream on everything, porridge with double cream, loads of fish done in milk and butter, my courgette soup, which is easy to make, I did write it up, goes down well, mashed potatoes tasted like sand, apricots were too strong for me, but peaches and double cream went down well. Try to drink loads of water, as it does help.
We are all thinking of you, Big Bear Hugs, and keep us updated on how you are coping

Had a check up on Wednesday, unfortunately my weight had dropped 6.5 lbs!!
I couldn't believe this as I have been trying little bits of food each day, but I have not been feeding as much as I should have, I just hate been stuck for hours on this machine, especially when I feel a bit better and I want to get up and about. I was hoping we could have spoke about removing my tube, but they think it will be a few weeks yet until my weight either goes up or stabilises.
I am still having alot of pain in my throat when swallowing, I thought it would have started to settle down by now, my medication is going up instead of coming down,HOW LONG BEFORE I AM PAIN FREE?

John took me out on Saturday night, he has been asking me to go out for a few weeks now but I always refused as I am self-contious about the feeding tube on my face and people staring (some people can be so rude can't they). So this week I thought why not, mum offered to look after the girls and told me to go out and enjoy myself, as the day went on I started looking forward to it, now what will I wear? NOTHING FITS, I have lost over two and a half stone, none of my clothes fit so I had to rush out and buy something new, I haven't been shopping for months, so back home, bath, washed my hair and started putting make up on for the first time in about 6 months, what a difference a bit of make-up makes.
We went out to see a band, it was quite hard to begin with as it brings back memories of my singing/my band, but then I think I will be back, it will take time but I will be singing again.
People did stare and I did feel awkward, but John held my hand and told me I looked great and he was proud to be out with me, that made all the difference.
That was another step forward to normality.

Speak to you soon

Tracey