what a week!!!Yesterday i put rob in the car and drove to ST Lukes 2 hours before his treatment was due.i found a radiographer, and demanded that someone see rob immediately and give them their due he was seen by the doctor at once.He has thrush in his mouth now as well as weeping sores and rivers of indescribable mucous and phlegm.His total fluid intake for the day was 250mls and he hasnt eaten for a week.He cant take the fortisip because it sticks to his mouth,and he has lost another 3 kilos.So to add to the pharmacy in our kitchen we took home mucaine,nystatin,and lemon mucilage to put with the asprin gargles the oromorph was doubled the Doctor talked through some options with us and then he had his treatment.On arrival at home we eagerly embarked on all the new meds and just one after the other he coughed and choked and cried in pain at the burning.Then he went to bed.
This morning saw no great improvement, he took an hour to expectorate all the mucous and phlegm that had accumulated over night,and then flatly refused to have any more of the oromorph which he says burns his mouth too badly,so he gargled in mucaine took his other meds,and managed to get some milk and build up down.He cant speak,and looks so unhappy,but is still being very stubborn and unreasonable about keeping to a schedule for his meds and fluid intake.When we got to the hospital today the dietician was waiting for us and also the doctors.Short version is they put him on morphine patches and also tablets for breakthrough pain and he is to get an abdominal peg next week.If i cant get his fluid intake up he has to be admitted to hospital for iv rehydration. so it is going to be a long week end and i have to watch for the morphine making him too drowsy,and him getting dehydrated and all the time there is this uneasy silence .
to date his meds are now
paracetamol
diclofenic
tryptizol
asprin gargle
nystatin
mucaine
morphine patch
morphine tablets
Difflam and build up if i can get it in him.no wonder he is fed up!!!!!

Liz, you both are having a really tough time. The feeding tube will help ALOT. Glad to hear he is going to get one soon. One of the things I always had on hand is a product called Pedialyte [made for children] It is a liquid that can be drunk or used in a peg tube. It is a fast replacement for electrolytes and fluid lost during vomiting, diarrhea, or lack of fluids, etc. and will help prevent dehydration. You may not have that brand available, but there should be something along those lines in your grocery stores. It helped John through many dehydration episodes. Seeing someone you love in so much pain is a very hard thing to endure and trying to get him to do the things you know will help is very frustrating when he doesn't feel like it. I wish you the best of luck and am glad you are being strong with his Docs. Amy

Liz - My thoughts and hopes are with you that things get better soon. You are doing a super job. Amy always has such good and really helpful things to say. i'm so glad we have her in our corner. Stay strong and take care of yourself, too.

Diflucan works better than Nystatin for the Thrush.
If he needs rehydration see if you can have it done in infusion rather than the ER. It's much faster and more comfortable.

It's only going to get worse - he's got to stop fighting it. He's got 20 more or so to go and it gets even worse in the weeks following the end of Tx.

If he's getting chemo, particularly Cisplatin he MUST stay hydrated or risk organ damage, especially kidneys.

Basically he is going through what most of us did, only a lot sooner. Treatment is not a happy time - he will be in this state for a while. Just take it one day at a time. I know its hard to watch. My wife thought for sure I was going to die but 4+ years later here I am. And I am healthy today.

Hi Liz, Sorry to hear that Rob's having such a rough time and want to echo what Amy is saying about the abdominal PEG tube. It was the only way that Jack could take the medication, food and water during treatments. If I'm doing my math conversion right, that's a lot of weight that he's lost in a short period of time.

It is going to be a long series of weeks for both of you and you will need to find the inner strength to get through this. The uneasy silence is mutual fear, and it's terrible but temporary. Keep telling yourself that this will get better. You didn't choose cancer, it came uninvited into your lives and of course you need to find a way to deal with it for the long haul. But right now it's all about the physical pain and symptoms Rob is having and getting control of that.

Jack did end up in the hospital during treatments because he developed an infection. It isn't a bad thing if that happens to Rob because they have the ability/equipment to handle his care, and they'll be motivated to resolve it and send him on his way.

When he gets the PEG tube they will probably teach you to pour the liquid in by gravity - just letting it drip into the PEG tube. Jack couldn't tolerate that during treatments and we had them give us something called the kangaroo bags with tubing that hung from an IV pole so we could regulate the drip and go more slowly. You may want to ask them about it particularly if he has nausea. The main thing is that he gets the PEG tube put in and gets started on using it.

When you're in as much pain as Rob is that's the only thing you have any ability to see. His feelings are normal and appropriate to the situation. Hopefully the patch will control the pain and he'll be less miserable. I hate everything about this treatment, but especially the part where I had to stand by and watch the person I love most suffer with no power to fix it. Remember that you are helping Rob just by being his voice and being tuned into his symptoms. YOU CAN DO THIS. You're already doing this by taking on the doctors and standing up for the care Rob needs.

A day will come when this will be over. In the meantime hang in there, you're doing great.

Regards JoAnne

Liz,

The PEG tube should take care of many of the problems with Rob. It sounds as though he is going to end up as a hospital inpatient for a few days to get sorted out if things don't get better. Hopefully, the PEG will relieve a lot of the problems to avoid this.

Bill D.

Well a new day and a little ray of sunshine .My boy feels better!!!!He has manged to drink 1 litre of water so far today and has taken all his meds without to much difficulty.He is very wary of trying anything other than water at the moment but so far so good.He slept better but had a horrific crust of mucus on his face .His skin is starting to crack despite the aqueos cream but he says it doesnt hurt.Only thing i have worried a little about is that he is falling asleep at the drop of a hat.I keep making sure i can rouse him alright but he has no pain lines on his face now :)thanks again guys for all your support

If the skin cracking is from the rad tx you might want to try biafine. It's great stuff for the blisters, burns, and cracks that my husband gets from the rad tx.

He is managing 2,500 mls of water a day now which is the target set by the oncologist,and the difference it has made to the thickness of the mucous is phenomanal.No more choking and no more spitting gallons of the stuff.The nystatin is clearing up the thrush and he doesnt seem to be having adverse reaction to the Fentanyl patch.He has now gone 12 days without any food,and nothing we try will get past the sores on his mouth,so i said lets just be glad you can get the water down and worry about food when the peg is in.Mentally he is in a dark place at the moment as he fights and fights to try and go to work.This ended in a big confrontation this morning and i told him some people at the cancer centre who had no chance of recovery would be very glad to have boredom as their only worry.I seem to be spending more and more time in my room keeping out of his way!!!An hour later he changed back into his tracky bottoms and tee shirt and came and found me .Its so exhausting all this constant battling with him.He is used to the patches now so they are not making him drowsy and i think he feels if he keeps on trying to eat he wont have to have the tube.This ends in frustration and tears and at the end of the day the poor so and so says he feels hungry.Drs appointment this afternoon and dietician ,so we will see what the next move is.The skin burning is very severe now and has caused the operation line round his neck to swell up alarmingly and his skin is bleeding from several places but the Doc says no way can he take a break because they are going for the full cure so its down to me to try and keep his skin in the best condition i can.A cheerless Mothers day has just past with all my family three hundred miles away and a thoughtless son forgetting didnt help i seem too easy to tears at the moment and i need to toughen up again Tomorrow is a watershed day for us as we reach HALF WAY

liz,

I'm sure posting your frustrations help and I'm sure you're tough & strong enough to get through this. As we say, when the going gets tough.... Now explain what tracky means? Is that like my "can get dirty with holes in them yard clothes"?