Great minds 200 minutes!

Hi Liz

I agree rob does have a huge amount of will power and determination but it is sometimes wise to listen to your body RT is a gruelling time during treatment and rest is vital if you can not physically get enough food down which is understandable most of us have been there and some of us still struggle with eating
Burning energy when working is also going to have a huge affect I can understand the need to continue working for financial reasons or a case of keeping a level of normality during a difficult time when a lot is changing and your experiences are unfamiliar but rest is a crucial part of the healing process

Mouth pain ulcers etc I was prescribed a cocaine based mouth wash (yes I was dubious at first but it worked and it was better for the pain than anything else previously prescribed please ask your consultant/Dr

Mel x

Yesterday i packed him in the car at lunch time and drove to the Royal Surrey three hours ahead of schedule.I then walked into his treatment area and grabbed a radiologist!!She was brilliant and got him seen by Dr Bloomfield within a few minutes.They have now added Nystatin,Oxetocaine ,and a lemon stuff to put with the Asprin Gargle and the Dr wants to see him tomorrow again.He is taking no nourishment at all and has lost another 3 kgs since Tuesday.the doc says he may have to go into hospital and get hydrated,medicated and then have a peg fitted.A measure of how ill he feels is that last night he said if the worst comes to the worst he will do that.We are having a real problem with the oromorph which hurts his mouth so much when he takes it that it makes him sick!!!I am going to ask if they can give him tablets of some sort.This morning after 1 hour of expectorating ,he has managed a cup of build up and to take his medication (not the morphine) and he says it feels better.He cannot talk much now though.The doctor says such extreme problems so early are rare but its not much consolation to the poor lad!!!!

love liz

Liz,
I too had problems keeping down Oramorph initialy. The Dr perscribed me some Metaclopramide (anti sickness) to take before hand to keep it down. I also found mixing it with either water or a little milk took away the harsh taste. Maybe Rob could try that.
The PEG tube would really take the stress off him trying to eat.
Good luck!
Michelle

Liz I'm sure you are already aware there are alternative powerful drugs to morphine. Whilst some of us found it marvellous relief others don't. Someone here could not get on with morphine - I think it may have been Fran who had something else. Chelle is right the anti sickness drug is essential. I think I even took it a couple of weeks after too as the radiotherapy continues to work for another 2 weeks as if you are still having treatment.

Hopefully Robin will realise that if the therapy makes him feel so ill think what it can be doing to those nasty remaining cancer cells. I'm sure he will often say the treatment is worse than the illness before. I know I did. If they are talking about taking him into hospital for nutrition help then I think they are on the case.

Hang in there Liz. I think you will find you do take over for the next few months, so you're proactive approach is the answer. Obviously Robin is a proud man who feels he needs to keep his client base and is aware of possible long term financial difficulty. Can you somehow think in terms of budgeting out 2 or 3 months off work. Because its likly to take 2 months to get this done.

For now try to be kind to yourself and find some small space in the day when you get a treat - a favourite tv programme, a long bath,a proper meal even though Robin won't be eating it. Easier said than done as I expect you too are losing sleep if Robin is up when he is so uncomfortable.

i hope you are still online pauline! it is the oromorph touching his mouth that is the problem.It stings so much it makes him gag we have stemetil if it makes him feel sick but its getting it down his throat that is the problem.the only way i can describe it is like when something goes down the wrong way and it ends up fling out of your mouth an nose(sorry)

Stinging sounds horrid. I wonder if Oramorph can be adjusted by the pharmacy to add or take away an ingredient that makes the stinging.

I always found oramorph helped to deaden everything in the mouth. Since it's Friday perhaps you should seek a gp appointment today if not going back to the hospital today. Although just at the end of my treatment I discovered that there were always some radiolgist working over the weekend who could have talked with me.

Is he taking morphine tablets too? Also I took the stemetil/ maxolon as a preventive the nausea everyday not just if I felt sick on some occasions.
When he has a peg I think the medicine could go in that way.

This message has been edited. Last edited by: PaulineT,

When we arrived today for his treatment ,the dietician and the doctor both came to see him.They have put him on morphine patches and tablets for breakthrough pain as well.He was allowed home on the undertaking that i could get fluids in him and would contact the on call oncologist at the hospital if he gets too drowsy or dehydrated.He is also booked in to have a peg fitted next week.He cant talk at all and wont even try to answer the phone.He went to bed tonight without any of his meds and i am finding this stubborn streak hell to deal with.I am no pushover but he leaves me for dead when it comed to digging his mule like heels in.Maybe the morphine patch will get going over night and he will feel better tomorrow.

Almost half way there now Liz. Hope you are coping.

Today was to have been so special .Instead i am at home on my own ,and he is in hospital waiting to for his peg fitting.The last few days have been a mixture of heaven and hell.The patches have cured his mouth pain enough for him to be able to drink good amounts of water which in turn thinned down the mucous and made his choking better but then he thought he could try to eat anything he wanted ,and got so angry and frustrated because no matter what he tried ,it hurt or burnt his mouth.Then to top it all he decided he was going back to work yesterday.This resulted in a huge confrontation between us and although he backed down ,he is now a simmering cauldron of resentment towards me.We went for his rad treatment yesterday only to be met by the dietician who promptly had him admitted to hospital.Driving home last night in the snow!!! was a mixture of worry and relief and this morning he still wont speak to me on the phone .My shoulders are broad but my back is bowing under this pressure and i feel like he blames me because i persuaded him to want to live.

Hi,
Keep your chin up he loves you really and he is cross with himself and the cancer and can only direct that at you.
He will have some discomfort after the PEG but once he's using it he will feel better because he is getting the right nutrients and hopefully his demeanour will brighten.
I found myself quite low at this stage. I was fed up with "fiddling " with myself. Constantly doing things with my mouth- gargling spitting cleaning flossing pain killers etc and also feeding myself with the PEG. What a chore!.
I felt low straight after I had my PEG as I had it fitted before treatment started.But as I have stomach muscles the discomfort is not good. I was not prepared for this as in the scheme of things a PEG is not much to worry about.
I used my PEG loads and kept extra fluids up orally. Some days I tried to eat but it was nice not to have that pressure and knowing I was still getting the right diet.
I must admit I did begin to smell of fortisips after a while.
Wouldn't touch one with a barge pole now!
Get him home and get him to rest. Something I now find easy to do but at the time needed forcing.
Speak again and good luck

Anne