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John and I went away for the weekend this was arranged for when I was feeling better, but on Thursday I really was quite ill and didn't think I would manage, but Friday felt a bit better, had a lovely time and came home on Monday. Only thing was while I was away I didn't eat, I have the constant feeling of being full and very nauseaus, the way I describe is like having eaten a 3 course meal and then someone telling you to eat another, I just couldn't face it. So the upshot of it all was when we got home I stood on the scales and I have lost another 4lb! This can't keep happening! I am now 7st 10lb. I called the hospital because I was really feeling ill and worried, they wanted me in straight away and said I may have to have the feeding tube put back in Then I remembered I had stopped taking my anti-sickness medication, because I had been feeling better (silly me!) so started taking that yesterday and pleased to say feeling much better to-day, I think I am trying to run before I can walk.
I am just so fed up of being ill, I am only 35 I want to feel good again, I want some energy, I am so lethargic the slightest thing tires my body, when will I feel strong again? And I am always cold, my husband says this is because I have no meat on my body!, Hes probably right, but I am trying.
Love to you all
Hi Tracy, my two operations will be coming up to 18 months in June, that is not to say rad treatment.
I was hoping to be feeling O.K. by now, but I do get very tired, I went to Chelsea Flower show last friday, and was out for the count, for four days after.
Try to eat avocado, goes down well, mango, stewed apples, and of course the rice; I never wanted to eat, but used to pass out if I didn't have something.
BIG BEAR HUGS thinking of you. Garance
Hard not to feel envious of other people who get to eat whatever they want without a thought. Even people on diets get to cheat once in a while.
Plus normal people don't eat when they're not hungry, or when it would make their mouth uncomfortable.
On the other hand, getting food down has been for me the single most important part of the recovery process. I'm kind of obsessive compulsive so I use it to make sure I eat three times a day and drink milk shakes between meals.
Hi Ron, I manage to eat three times a day, with loads of water to get everything down,Fish is great, and chicken, meat I find a bit of a bind as I have to cut into tiny pieces; have put weight on, so am looking quite a lot better; but I still get giddy spells in shops, and I think it must be due to rad treatment.
Big Bear Hugs to you all out there.
Garance do you enjoy the meat or fish or are you justeating it to eat so to speak? I'm still not crazy about either and I used to love meat.
Tracey the weight loss is likley to continue - you just have to try to stay on top of it or not lose anymore. I don't think people ususally lose much more than 60 -70 lbs from what I've read across the net whatever their weight. The stomach stays shrunken for ages.
I suggest you add single or double cream to stewed fruit and have plenty of milky drinks although milk can increase mucous its all much of muchness the old phlegm!
Hello all... Its almost two and half years since I finished treatment. I lost approx. fifty pounds in weight went from size 12 to size 8. Would you believe, now, I am a size 16, but I'm happy. I developed Hypothyroidism due to trauma to the throat hence the weight gain. I also had very puffy eylids, which I had removed three weeks ago, thought that would make some difference to weight (Removal of excess baggage) lol.. wishful thinking. But has made a great difference to my appearance.
I can eat almost everything but stay clear of acidy fruits etc.. and just will not attempt red meat, not that I cannot eat it - just will not.
You know time is a great healer and it may not seem like it when you are going through such pain and misery, but it really does get better.
Hi Pauline, I really can't taste much, tend to go on memory, I have had so much double cream, I amgetting a bit sick of it. I really cannot say I have enjoyed eating in any way, I used to love curries and spicy foods, and a glass of red wine, will this ever be possible I ask myself ?
Well try the zinc below.
I am convinced that what has given me back my taste to the extent I now have it, are 2 factors.
1. TIME and patience
2. Zinc tablets. I particularly like those by Boots which are quite small and coated and don't stick like some of the drier and huge sized bullets. The small print says zinc sulphate. Some tablets in other brands also have the full name on the label.
These are just Boots one a day zinc. I only need to take them for a few days and immediately my taste perks up abit. Sometimes then it goes off. So I don't take them all the time just in bursts of about a week each month now. It suits me better than taking them continously. After a while I noticed no difference when I took them all the time so I stopped for a few weeks and then restarted and found that best for me.
I didn't find the most expensive ones as recommended by the health shop any better. Harder to get down as they were bulkier actually. Zinc is worth a try.
I think most of this though is time realated. The only meat I can manage really is a little bit of bacon or home boiled ham which has to be boiled twice as longas usual so it flakes. But the texture has improved no end this past year.
I also find those yoghurt drinks like Actimel quite good. Although they are so small I put 3 in one glass usually!
Tracey and you might try those for a change from cream.
Hi pauline, thanks for the tips, I will give Zinc a go. I can now manage raspberries and cream, but not strawberries.
tried a sip of sweet white wine, pain was horrendous and very painful.
In 2001, I had 39 days of radiotherapy, two sessions of chemo. Bugger!
Four years later...
I can eat lots of things, enjoy red & white wine, taste stuff a lot of the time.
The other night Sandra served a curry - and I enjoyed it! A significant first.
I investigated swallowing problems, & the specialist shoved the endoscope up my nose & said it's nothing to do with narrowing, everything to do with candida.
I see the candida specialist Tuesday.
Believe me - it does get better, and I hope goes on getting better.
Philip in the Bay of Islands
Had to attend the hospital on Friday as I was really quite ill, very weak, shivery, sweating,nauseus crying all the time,and no sleep, although I am exhausted. so dad to the rescue off to see the doctor, turns out I have been going through 'cold turkey' withdrawal symptoms from stopping my medication. This has been going on for 10 days. I could feel the depression starting as I am so fed up of feeling ill. I came through the radiotherapy and the burns, but feel worse now, surely I should be feeling better?
Anyway I am now back on ALL medication with a programme to reduce my oxynorm (which is twice as strong as morphine)I didn't think I was addicted to this but obviously my body was.I feel better to-day, but still so weak, I have no strength.Just take one day at a time I suppose.
I really really feel for you. Matt keeps trying to come off his medication and gets very down when he has to up it again. I'm thinking of you, keep on going love. Michelle. x
i hope somebody is there who can answer my question. I am to have a tongue biopsy tomorrow morning and i am really nervous about it, i have a phobia about drying my tongue with dry clothes, and not being able to swallow during the procedure. Could anyone who has been through it, outline the procedure for me and if you can talk ok after, with a numb tongue????
Getting off morphine was one of the worst parts of the whole experience for me. Felt nauseaus, pukey, and tired all the time. It lasted over a week. Good luck the next time you have to 'kick'. You don't want to have to take it forever.
Sally, hope you saw my reply on the other line about tongue biopsies. Not sure why you are worried about the swallowing. The procedure is very much like a dental procedure, and swallowing (or being dry) is the least of your worries. Biggest pain is that it hurts like the Dickens.
hi ron, the swallowing thing is difficult. it is more tha i have a phobia about having a dry tongue, or someone drying it with a cloth, i know it sounds really weird. also you need your tongue to swallow right, well if it is stuck out of your mouth for 5 minutes dont you get a build of saliva??? or do they have a nurse with a vacum like the dentist. Anyway, i will soon find out.