Hello all

Thanks Doctor, Pauline & Pikeman for your concern.

I've been very tired since radiotherapy which is why I've not felt up to typing a message until now.

Six weeks of rad. on lower mandible - left, right and centre - plus 2.5 weeks at home now. All the expected side effects gradually started to kick in after week 2 - ulcers, sore mouth, burning tongue and lips, neck tightness, loss of saliva and taste buds. My face was also very red and flaking (though not as bad as yours Pauline)but almost back to normal now. After two weeks post rad. things started to ease up and I am happy to say I am now off pain killers. The Doctors and radiologists were very good making sure I had all the medication I needed, including morphine which helped enormously and made it all bearable. All in all, it was no worse than expected and will be worth it in the end just to get rid of (hopefully)the remaining cancer cells.

I must admit I have felt pretty low at times but, to be honest, that has more to do with a couple of problems unrelated to radiation i.e. my operation in June was removal of lower central mandible and replace with bone graft and flap from hip. Unfortunately, the bone graft site has ruptured leaving me with a very large hernia which can't be operated on until April (Surgeon said too risky after radiotherapy). It's very uncomfortable (heavy) and has been bothering me more than any side effect of rad. Can't walk or stand up for long. Also, I had severe constipation last week because I couldn't get any fruit down me (too painful from the acid). Have now discovered pears go down well. So in a way, although not pleasant, most of the rad side effects have been bearable, knowing it would only be for a few weeks. Fortisip, Build-up, and porridge is about all I can manage to get down me so have lost weight. Trying hard to keep my calories high but it's really hard when I'm never hungry and everything is so tastless and gluey. Does anyone know how long it takes for the appetite and taste buds to return.

I saw the Doctor yesterday because I am so breathless and had a blood test; hope it's just anaemia which can be treated easily.

That's about it. Now I'm back in the swing of things a bit more I'll keep you posted and hope to read how things are with you all too.

You are all in my thoughts.

Steph

Hello Steph

Glad to know you are the mend. You may find this link to Abbott Nutrition UK useful. They make EnSure. They also make ProSure, which has been shown to be effective in improving weight, lean body mass, performance status and appetite in patients with cancer induced weight loss. ProSure may be prescribed for the dietary management of patients with cancer requiring nutritional support. It was launched on 21 January 2002 and I came across it about 2 weeks
ago.

They also have a pdf Nutritional Guide & Recipe Book with recipe suggestions that you can download.

You need to put on your weight and keep well.

Best wishes
Vinod :coffee:

Forgot to say that during radiotherapy I also got shingles. Now that WAS painful, and kept me awake at night for a few days. OK now, although scabs are still there.

Thanks Vinod - I'ts late now <yawn> but I'll have a look at those web sites on nutrition tomorrow as I do need some suggestions to put on, or at least maintain, weight.

All the best

Steph

Steph - delighted to see you back, and amazed at the way you're coping with everything still retaining your sense of humour and everthing.

You know when I read what you, Pauline, Paul and I'm sure others have had, and are having, to endure I really do thank God thay I've had it so easy. I'm not sure I could have coped with all the problem you people have faced.

I hope you do get your sense of taste back, it's the thing I miss most. I have, perhaps, vestigial taste, being able to sort of taste pineapple juice, strong tea and differentiate between sweet and sour. And that's it. I know it won't improve being fully advised of side effect before treament started.

As mentioned before I'm on permanent PEG feeding, minimum 1500 cals. per day and I seem to have stabilised my weight at 12 st 9 lbs. So that's yet another problem area I've not had to be worried about.

And shingles, well at the risk of sounding callous, rather you than me.

However, I'm sure you'll overcome all your trials and tribulations and I'm sure I'll not be the only one praying for you.

Hope you'll feel up to keeping us advised of your progress.

Hi Steph - great to hear form you - what atrial it all is for you. It is hard in the immediate weeks after. I found porridge about the best. You might try rice krispies well soaked in creamy milk work. Also try the milky bar tubs I suggested to Paul. Tinned rice pudding with extra double cream added. I got through about a small tub a day.

Mark and Spencer's asparagus soup was also ok as a small portion. I found very small portions of firmer foods - about 1 tablespoon of some foods was sometimes viable.
You are roughly on a similar timescale to me, but ayear on. I did eat sherry trifle last Christmas and cheescake, but one of the first things I managed was jaffa cakes dipped and softened in tea.

One egg frothy half cooked souffle omelettes was one of the first items I managed and also pancakes - both cooked in butter. still can't eat 2 or 3 egg omelettes.
Hope this helps.

Pauline

Hi all,

Just to say thank you for your responses and to say what an enormous help to me they are.

Pauline - thanks for your food suggestions. I do have porridge for breakfast but will try rice krispies for a change (always with cream or full fat milk). Tried an omelette - no good! I'm OK with most smooth soups but tend to opt for a Build-up soup instead as I know they are full of goodness and I need to gain weight.

Last night I discovered a lump in my temple by the hair line about the size of a marble but not protruding much. I have an appointment on Monday at Exeter hospital to get it checked out. I expect they'll do a biopsy but after so many set backs I really don't want to know if it's bad news. I didn't have radiotherapy on the temple area as the malignant cells left behind were all in the lower mandible so it's a bit of a puzzle.

Had a flu jab this morning - they said it would be OK, and so far, so good.

Kind thoughts to you all.

Steph :coffee: (actually it's tea!)