Mum has only done 2 weeks today, out of a 6.5 week course and already her mouth is sore, she has thrush, her lips stick together and therefore bleed when she wakens up and she is now unable to eat her porridge on a morning, which was her mainstay (plus the Ensure).

She has been given gel to mix with water to protect her mouth, thrush medication to use 3 times a day, fluoride stuff to protect her teeth, cream for her skin, etc., etc.,

Could any of these things be reacting with each other ?

Is it normal to have so many things to "do" to yourself during treatment.

I've read somewhere about saline + bicarb - did this help anyone ?

I'm at a loss as to what to try to do to help the poor old soul - and she's so tough and brave.

Hi Winnie,
Sorry to hear your mums having a tough time.
Unfortunately it is usual to have lots to do to yourself through treatment... Look after your teeth, take medication, try and get enough nutrition, manage your skin problems, drink enough fluids, ASWELL as travel every day for treatment. That on top of the fatigue and running a family home etc.
I used shea butter for my sore dry lips. Pure 100% shea butter from L'Occitane. Smother it on at night so they don't stick together while you sleep. Does your mother have adequate pain relief? Because she should mentiuon if the pain in her mouth is getting too much. Is she PEG feeding now? It's so important she maintains good nutrition. It's something we all struggle with here!
I hope things don't get much worse for her.
All the best Winnie!
Michelle

Hi Winnie salt and bicarb worked for me

rinse every 2 hours with 1 teaspoon of salt and 1 bicarb per Quart
controls acidity and helps with the thick mucus

remember to rinse with water after

Dr Vinod will confirm this

Its hard with all that going on thers so much stuff to take

Hope things improve
Dave and Sue

My kitchen looked like a sub branch of the local pharmacy (which Robin lives above!!) and the only way i could manage it all was to do a spread sheet which i pinned on the wall.this was a life saver as Rob is worse than useless and would probably take everything together once a day and only use his creams and potions in the morning and when i would ask him in the evening if he had used his thrush medication or his saliva gel he said " i did that this morning " the look on his face when i told him he needed to do it 4 times a day was priceless.

Salt and soda gargles are great and helped him a lot/Gallons of emulsifying ointment on his skin kept it in pristine condition after the early burning and impetigo,lipsyl stick helped his lips,biotene toothpaste and mouthwash helped the dryness and saliva spray and gel kept the inside of his mouth moist.

so yes is the answer the regime is huge and the product list lengthy,but worth it.
liz

Bill's R/T starts tomorrow, all your comments here really scare me.

Is your Dad doing all the caring Winnie, how is he coping? and how are you coping?

Hi Winnie

Your Mum is probably going to go through a rough few months and it will almost certainly get worse before it gets better.

The bicarb/salt solution really did help Tony he was using 4 times/day and towards the end of third week of R/T he was swishing it round his mouth every 2 -3 hours. He also found the synthetic salavia a help - although chewing gum was just as good.

For skin Aqueous cream was recommended and he was advised to cover up in the sun.

Prepare for the possibilty of pain. Tony was prescribed Codeine at week 2 of R/T and was doing fine, but by the end of week 3 the pain suddenly kicked in and the Codeine was next to useless. During his final week he became quite poorly he was unable to eat or drink, mainly due to the pain and was admitted to hospital where they gave him a pain releif patch on his arm and administered "Oramorph" liquid morphine. Within 24 hours he was relatively pain free was able to drink the Fortisips/ensure and had improved enormously. If only the morphine had been given a few days earlier I am sure this could have been avoided.

Best wishes to you and your Mum

Angie
My advice to you would be to get Bill to eat as much as possible during the first 2 weeks of R/T so he has a little reserve.
Good luck for tomorrow.

Kathy

Hi Folks,
I start RT on Monday. 30 sessions. I know from reading previous posts that this could be tough to cope with. I have a notebook and every time I see a new tip I get out the notebook and write it down. Thanks to all who give their advice and tell what it has been like for them. I'm sure with all this advice I'm going to find something that works for me if I need it.
SusieR

Thanks Kathy, Bill is eating really well at the moment and although he has lost three stone he is still a big man. I will monitor the pain and will and sure we have access to something stronger before he starts to suffer too much.

Good luck for Monday Susie.

Winnie, thinking of you. sorry can't do anything to help.

Good luck for tomorrow Angie...
I'll be thinking of you & Bill. Lets hope he doesn't get too tough a ride. He's done well this far hasn't he. Glad i read you got some of your questions anwered. As i said on the other thread, McMillan nurses are one of a kind, they're amazing people. & my Mcmillan radiographer LITERALLY saved my life when i was 6stn 10lb & throwing up all day every day. I hope Bill apreciates you and everything you do. Maske sure you take care of yourself too. Lots of sleep and eat well.
Good luck again, we're here if you need to let off some steam!

Susie,
you seem to be very prepared, even though nothing camn truly prepare you from the slog that is R/T. You've done your research - i wish i had gone into it eyes open! It may have been less hard to deal with (?)
All the best for Monday, It'll be over before you know it. When your stuck to the table, find your "happy place" and hide out there for the few minutes it takes!

Good luck guys!
Michelle

Mum is at home and dad is doing the caring. She's coping so well and still cooking for dad, washing ironing etc., etc.

The cocodomol have started to make her sick, they just bounce every time she takes them so she's back to soluble paracetamol for pain control. I guess this won't be enough eventually, but she can't take the cocodomol.

She's still managing to sustain herself with the cartons of Ensure plus, and what little food she can take, but I don't know how long that will be possible.

It's a bitch, isn't it. She coped so well with the major surgery but this is getting her down.