Hi to all. Graham is on the final stretch now, 5 more RT's to go, having gone through 25 already. He has lost so much weight, hasn't eaten anything for almost 7 days now with very little water, so many times I felt sure they would admit him to either re-hydrate him or put a peg or ng tube in. It's so cruel, either there is no beds or because thank goodness his kidneys are still functioning he doesn't need it.

I have hated to watch him suffering so much, he is asleep now and I am about to wake him up to drive up to London to get zapped.

How he is managing I don't know, his parents and sister visited yesterday and both burst into tears, he looks so unwell, and skinny. He is now at this late stage reluctant to get a feeding tube but he is unable to take any of his diabetis meds although they have been prescribed in liquid form he has such a strong gag reflex it's become a real battle. He can't even say the word chemo without gagging!

I just wanted to vent my worries and concerns, I'm just totally lost at the moment, beside myself worrying especially when he thinks this is his time to go. I'm sure it's not but it feels like it most of the time. I can't wait for this week to be over and for him to begin his recovery.

Thanks to all on this site it's a massive help to me, x

I am shocked that they haven't fitted him with an i/v feeding tube. I dont like to worry you but he cant go on for much longer especially with very little water and it isn't all over when the r/t is finished. I think you should be doing a bit of shouting to draw the consultant's (or anyone's) attention that he has had very little fluid.

Whose decision was it not to fit a RIG?

Ray

As I have said before Joanne - i also find it strange that Graham hasn't been fitted with a peg. Goodness knows what state I would be in without mine as I lost a stone and a half and it is onl the high calorie supplement that maintained my meight (danm that supplement lol). Seriously though - until recently there is no way I could have hd anything orally and in my area the pegs are fitted before treatment begins so we don't have to go through during rt.

On the plus side 5 MORE TO GO!!!!!

Love to you both

Chloex

Hi
I have to agree with angie it is a very fine line, from what you have said Graham needs to be in hospital.

My experience was just like your husband last week was very difficult I elected not to have a peg but ended up with a ng and a week in hospital.

The thing to keep in your head is the treatment is brutal and yes it does make you very ill and what Graham said I think most of use have said, he will get better.

You may need to kick up and start demanding that he is hospitalised.

Take care


Tony

That sounds really bad. I agree that you should definately start kicking off. It's bad enough having to have RT without the extra stress of not being looked after properly. At least it's nearly the last one now. Hagg.

Hi everyone, at last they have kept him in, I mean that in the nicest possible way!! He has now got an NG feed tube and has a drip to rehydrate him. He has lost another 7lbs since Thursday so he didn't have any choice and neither did they. I feel relieved as it is totally beyond me to look after him that sick, so tonight i feel relief that he is getting proper care and medication and tomorrow he will feel better in himself.

I'll let you all know how he is tomorrow, thanks again to all, this is my support.

Joanne x

I should think so!

Too right.

I survived without having a peg fitted, because my sister in law let her weight get too low and didn't survive and I was damn sure that wouldn't happen to me. If you are absolutely determined and keep drinking supplements just a little at a time, it can be done. It used to take me hours to eat even a tiny meal, but I got there in the end. Now a year from diagnosis, I'm back at work full time, but I'm very aware I'm one of the lucky ones.

Good luck


Chris

So much for the tube being the answer! Graham, bless, has such a strong gag reflex that he is sooooo sick. I left late last night as just as they had increased the rate of feed (not by much) he had uncontrolable vomitting. Joy, just showered with clean bed, clean clothes! They are going to try again today, so doesn't look as if he will be home again today, all the nourishment of the last day wasted.

Fingers crossed for a better day today.

I did have a discussion with a nurse on the ward and she said it used to be hospital policy to for patients undergoing head and neck r/t to be fitted with rigs but the policy has changed and she wasn't sure of the research behind it. That would be interesting to find out. Poor Graham feels to come this far and be fitted with NG feed tube that he has failed. I feel that it would be easier to have been fitted in the beginning as it would have taken the pressure off, not let him lose so much weight and enabled him to take his regular medications. But hey what do i know!

Thanks again to all Joanne x

Hi Joanne

Like Graham and Chris I too had tonsil cancer, it was explained to me that because it was on one side only they did not think that I needed a peg so I went without.

Same sort of problem as Graham but once the ng was fitted things picked up it took around a week before I stabilised. Lost 26 pounds in weight (26 inch waist) during the last couple weeks of treatment. Feeding took place during the night with a pump system which pumped in around 1500 cals. Getting rehydrated and pain control was as important as eating.

Like Chris I am too back at work, eating normal food, weight is normal and in a way I am glad that I did not have the peg as I started to take in mushy food within two weeks of finishing treatment.

Please tell Graham that he has not failed and as horrible as it sounds he is going thru exactly the same experience, next year he will look back and think was that really me.

Please give Graham our best wishes.

Regards


Tony

My mum's NG tube was a real lifesaver. She had to be admitted to hospital through her radiation treatment as she was severely dehydrated - she almost collapsed.

At least she could then take water, lovely Jevity plus, and all her pain meds through the tube and it kept her going.

Finally she was able to eat a little mushy food whilst she still had her tube in so she could gradually reduce the overnight feed and increase her proper food intake.

If the NG tube isn't working, there must be a reason, the simple one would be that it is going in too fast. What are they putting down the tube? Far be it for me to suggest, the learned ones in the hospital obviously know what they are doing (If they are not sure what current policy is, would it be possible to find out???) but overnight feed (in my husband's case, Jevity) I would go as far as to say, saved his life.

I think it's time you started to kick a little ass.

He is having Jevity and his meds fed through tube, they slowed the rate to 75 last night but by the time I'd got home he'd thrown in all up again. So now his last day of r/t has arrived (thank goodness!!!!!!) they aren't going to start any feed up until he has had that.

I'm sure he'll be in all weekend until they get on top of why he is vomitting, my feeling is he had just got so low that his body got used to nothing in his stomach and now can't cope with the volume.

I'm looking forward to better times and a recovered Graham.

Joanne