Michelle-I'm so sorry. My husband was pretty non-communicative also. Lately I've gotten him to talk about stuff even though he doesn't research this like I have. I think sometimes they want to believe that this will al go away. With Neil's latest bad news, he has started to read posts on this site. His initial diagnosis was about 9 months ago and he has just now realized that other people may have insight to what he's going through. I think maybe we all have to arrive at the same place but it takes some of us longer. His pain must be terrible and I pray for some relief for both of you.
Sue

Michelle,

In the throws of battle when I felt the worst, I was at home all day alone left to be a good patient and care for myself. When my wife would come home she would ask me "how much water did you drink?" and how many cans did you drink?", and I would lie to her just so she wouldn't get on my case. Well it didn't take long before the dehydration set in and with it came increased nausea and constipation and in turn everything starts to shut down and get worse. She finally decided to count my inventory before she left for the day, without my knowledge of course, and then she would nail me in my cover up. Long story short, he is not to be trusted. He may yell and kick and scream now but believe me he will thank you and sing your praises later if you hold him to the fire.

Michelle,
As for talking, Dan is getting to the point where it DOES hurt to talk and shortly he may be down to a whipser or no voice at all. I tried to use my voice as little as possible during the last week of radiation and for a few days after so his comment on not wanting to talk is understandable.

Rather than trying to eat meals with my hubby, I drank an Ensure Plus every few hours. Usually took me a half hour to get an 8 oz can down. The Carnation VHC which has about 200 more calories per 8oz can would have been a better choice had it existed at the time. Sitting down trying to eat with everyone watching every mouthful you take is very frustrating and I suggest he not do it. Let him take a magazine and his bowl of soup or whatever someplace where he can eat them at his own pace without the pressure of you watching him. If he doesn't do it on his own, he will wind up with a peg. It's up to him now. Some of us did it without, but there aren't many.

I got most of my water intake from black coffee which I normally sip all day long. If Dan drinks coffee or tea at work, this should be an easy way for him to get some hydration.

Tell him we are rooting for him. He can do this if he trys. Being stubborn has it advantages, but only if he uses it for his own good to beat this beast. Time to sip, sip, sip all day long.

Take care,
Eileen

Michelle:

Eileen is right about it hurting to talk. I went 3 weeks without being able to talk from it hurting so badly. Dan is probably being so grumpy now because it is really starting to hit him hard. Im surprised he is still able to work at all. This is what everybody was saying when you read the worst is yet to come. Be very cautious of his fluid intake. Just a few more weeks to go before Dan will start being back to himself. Its such a long road to recovery, just hang in there and vent on here as much as you like. You know we all care

Talking can definitely be a problem. This is hugely frustrating not only does one have cancer, feels miserable from the treatment is uncertain about the outcome and now you cannot even communicate. This really does suck, especially when it seems that you are being sucked into conversations.
A pad may help to write own more complex things to complement the hand signals!!

Perhaps you may want to consider viscous lidocaine for short term relief for eating/drinking and talking. I also used this when I had meetings with my lab. You swish this around in your mouth and it provides instant relief. I diluted mine a bit to stretch it out some more.
Granted the relief is short but it allowed me to cut down on the over all amount of oxycodone/morphine I used (which comes with its own problem.... constipation, which also sucks as it is another thing you really do not want on top of all the other crap.

Markus

Hi, Michelle, I encounterd alot of what you are dealing with while John was sick. The solution to his "not wanting to know anything about the disease or tx" [while I was researching and reading everything I could get my hands on] was to start printing out postings on OCF that were pertinant to what he was dealing with right then and leaving them lying around in an obvious place - as if I had been reading and got interrupted- sure enough, he started picking them up and reading them, and before long he would ask me to post a question to see what answers might come forth. Another thing that works for me was that I blew my top one night and told him that we were in this together and while I was not the patient, this cancer was affecting me as much as him and if he wanted me to continue to be his caregiver we needed to communicate better. Since he was dead set against any visiting nurses, etc., he took that conversation to heart. This all took place during the 1st round.
His anger is pretty much normal, but you do need to tell him that the cancer is, in many ways, as hard or harder on you as it is on him. This is not going to get much easier for a while. Hang in there. Amy

Thanks guys - I don't know how people get through this without a place like this one!! I am trying to understand thta it hurts to talk, but my frustration with it is he can talk when it's for work, but not when it's to me and the kids. We do have the lidocaine and it does not provide much relief for him.

Amy - we pretty much had this conversation tonight. It went really well and we are operating as a team again. I also told him it wasn't fair to give everything at work and have nothing left for when he gets home. I couldn't help it - I cried while we were talking and he responded really well. Much better than he did last night when I was mad. I think we are past this latest bump in the road with the anger and now we'll move on until the next one hits. LOL - I hope the Paxil helps him level out a little bit.

Hi Michelle

reading your posts is like reliving all of mine from this exact time last year !! The not talking to family is very very common and i remember having the same discussion with Anne Marie when we both had this problem.

It would seem that while the effort will be made for "outsiders"
you are supposed to understand and accept how painful it is to talk,and not get upset by the fact that communication drops to practically non existent during this very very hard phase of treatment.It is one of the most distressing for a caregiver ,and tested me to the limits.

Like the rest of it michelle this too will pass,so keep your chin up.

love liz

Michelle,

It only hurt to talk for me less than a week and that was post Tx. At that time it hurt to breath thru my mouth; it hurt to open my mouth; it just plain hurt everywhere. I had a bell, loved it, and a pad and pen that I used to communicate. This phase to will pass with time.

Oh yeah, the crying is a good tool you females have. As bad as I felt, that was one thing that would make me feel even worse instantly.

Ha Ha David - I will admit in my life I have used it as a "tool", but in this case it was legit and I couldn't stop it. I don't want him to see me cry because he has enough to worry about without my tears... but sometimes the truth comes through. and quite honestly I think sometimes it does you good to think about someone else - you get so self-absorbed (rightfully so) as you're going through this - sometimes it's good to step back and remember you're not the only one affected. Especially when there are kids involved. I can go a long time with him being angry and not talking to me, but sick with cancer or not - I can't handle it when it affects the kids. David is too young to understand why daddy has boo boos and why daddy sleeps all the time and doesn't play.... So anyway - I think we are past the anger again and on to being a team and remember that there's a whole family here :-). I know the anger will be back, but we'll enjoy this time while we can.