I have spent hours lately reading the posts of other caregivers on here so I know that I'm not the first and won't be the last to go through this hell. H has done his chemo and RT with last treatment being 3/12. Did remarkably well in fact...needed very little pain meds, neck healed well, no sign of the tumor on his tongue now. Was scheduled for neck dissection on 4/28 because a lymph node was still enlarged. We get to the hospital and they cancel as his BP is too high. Dr wants to put him in hospital overnight and get BP under control. H says no...took years to get the BP meds right to begin with and they were stopped as he was dehydrated, losing weight, quit smoking, etc. Wants his own doc who has dealt with this for years to take care of it. Surgeon doesn't know when he can get to hospital to ok him leaving and nurse won't take IV out. So H takes IV out and walks out. Took about 2 weeks for family dr to get BP straightened out and then another 2 weeks for surgery to be rescheduled for 5/26. On 5/25 H calls surgeon's service and cancels surgery. His anxiety level is tilt, the antidepressants/antianxiety meds aren't working, he wants a petscan before he'll have surgery, he wants the peg tube out NOW as he hasn't used it in over a month. He's had 2 rounds of thrush in this past month as well. Nothing tastes right and he's sick of eating what little does taste right. He's lost approximately 30 lb so far. Spent my whole afternoon yesterday arguing with medical people to get him what he wants.....petscan is scheduled for 6/12. Can't get the peg tube out as RT doc won't approve because he says he will still need the surgery and therefore may need the peg. H is threatening to yank it out himself. Two hours after I get the petscan set up (not to the doc's liking) and getting his antidepressant changed, and talk to our insurance company about how to get this peg out if surgeon won't remove it, he decides he knows he needs the surgery and it would be smarter to do it that way. Three hours later he's in full rant mode about not having any more treatment at all! So....having reached the end of my rope and hanging on by my fingertips I tell him to fix it himself. The man is bouncing around like a loose tennis ball!!!! In the meantime, I'm trying to work 3 days a week (which now seems like a vacation to me) and take care of 2 kids (ADHD/PTSD - not a vacation at all) and find out my mom needs to see a surgeon on Monday for gallstones.
Anybody got any ideas? Will this pass? I'm sure part of it is being off work this long....he hasn't worked since January. Even if no surgery was needed I don't know if he could go back to work as he has vertigo now (unexplained) and he drives a tow motor. I also think the fatigue would be too much as the company won't let him work less than 40 hr. per week.

Cheryl,
It sounds as if you are in the middle of a nightmare. I'm so sorry you are going through this. I know what it's like to be the caregiver and be responsible for everything coordinating and keeping the ball rolling. I was very lucky in that Richard was compliant and did everything he was supposed to do with very little complaining. I was still responsible for things running smoothly and covering all bases and was stressed and exhausted most of the time.

Was your husband difficult before the treatments began? Could this behavior be from a reaction to the meds. The behavior is irrational and if he is normally a calmer, logical person, this would be out of character. It sounds like he's at the end of his rope and has snapped. Men deal with things so differently then we do. His whole life has changed forever and that is difficult for a man to accept. We women are stronger emotionally and can "weather the storm" with more grace under pressure. Our lives as wives/caregivers are forever changed and living with this "new normal" is something we never expected.

I hope things improve soon for you and there can be peace and stability. I know you don't feel very strong now, but I marvel at the strength you show, having a job and caring for two kids. For me. giving it to the good Lord with many tears and praying with all my heart gave me so much comfort and faith. Please keep posting... Geri

oh wow cheryl
i thought my husband was the king of bloody minded cantankerous patients,but it sounds like yours is catching him up quickly!Rob pulled his IV and walked out of the hospital because he was fed up waiting for the doctor to write his discharge letter.I came to the conclusion that it all revolved around two things,emmasculation ,and not being able to control cancer.Anger at his body's failure and frustration at the weakness the illness produced,me doing everything and taking charge,his inability to communicate or carry out the simplest task,no "married"life,god it goes on and on,but just when you think you have all the balls in the air they throw a curved one and you drop the lot.Trying to control the treatment is the only thing left that is within their ability and becomes a focus point,something they can do without our help.Its a real hard time Cheryl,but try not to get to despondant this like all things will pass.

love liz

Thanks for the pep talk....I think I just needed to write all that down and then let go of it. Liz, I knew I could count on a reply from you....I've read most of your posts and I know you've been down this road too. And Geri, I think I've said this before, how lucky to have a husband that's compliant! If we look up "bad patient" in the dictionary, Mike's picture is there! I'm really hoping that part of this is the combo of meds is wrong and we're working on that. Mike is generally a pretty laid back guy....stubborn when he gets to a particular mind set but over all, laid back, usually not totally irrational. In addition to all the reasons for this behavior that Liz mentioned, and I agree with those, it's not helping that his kids are apparently oblivious to the situation here. They either don't get it, or don't want to get it. Being in age from 30 to 38 you'd think they would wise up but that hasn't happened yet. Well, off to keep juggling..........

Thats called denial cheryl and kids are brilliant at that when it comes to mom or dad

chin up babe

liz

Makes me wanna give them all a huge kick in the arse! They don't even bother to call and check on him or come and visit. I am thoroughly disgusted by the whole lot of them! Then there are my 3 kids....my daughter is basically banned from being around as we have been raising her kids for the past two years (another whole story there) and even she calls occasionally to check but the two boys have stepped right up and watched kids, plowed us out in the winter, etc. 'course they've been down this road before with some of our other family members and cancer - not oral but cancer and it's horrors all the same. What a shock this will be for them when his kids finally show up.

Hi Cheryl,
Martin went through an argumentative "I'll go to work with my staples in, i know better phase". Then 3 weeks into rad he became quiet. After 4 weeks, he did everyhing I said and never argued back. Now that was worrying! Even the dietician notice he didn't answer back.
He is now grumpy and depressed sometimes because he hasn't worked since August 08, and is still not fit enough to work (he's a builder, and office job might work, but not this physical), but much better. We are lucky that I can support the both of us just about on my salary.
Also on the child front, Martin has a 17 year old monster, I mean daughter who lives a 10 minute bus ride away or a 20 minute walk. We didn't see her for 9 weeks while Martin was at his worse. She would phone up on Sunday, ask if we were taking her out anywhere (like shopping in London), so I'd say no your Dad is a bit tired. She'd then decide it was not worth coming. I was SOOOOOOOOOO angry, but I couldn't be bothered with her and i was too exhausted, I had Martin to look after, and a job to do to get money. She never asked for me to come and pick her up (which i would have done had she asked) just for an hour to give her dad a kiss and a cuddle.
Martin is now better and quite disappointed, i think he has fianlly seen that she is not perfect little angel anymore. We now only see her if she wants something.
She lives with her disabled mum (who is also lazy and selfish) and does a lot at home to help her with daily things, but it is no excuse for being a inconsiderate thoughtless cow towards her Dad.
Oooo, I was trying to comfort, but I ended up ranting myself! Sorry!
People are very odd in the way they react. It seems radiation really changes men, and maybe he is trying to fight the acceptance of the cancer by fighting the surgeon. Martin was fighting the feeding tube and swearing and arguing with everyone, until he was so weak he couldn't and he listened (the worrying phase).
I hope your husband improves and listens, keep trying, it's hard.
All the best.

Cheryl,

Sorry but I laughed a lot when I read your post because I saw a lot of me coming through. Look I didn't like being sick; I didn't like my barbaric Tx and I especially didn't like NOT being in control. All that frustration builds up and it finally has to go somewhere and that usually is the closest person to us which is our Caregivers.

First off I agree with him not wanting the ND until a new PET.

I agree the PEG should stay in until the surgery decision is agreed to by all.

I think he needs to understand that it may take 2 years for his taste to come back.

And finally I think he needs to understand that all this frustration and everything he is dealing with right now is NORMAL and that he needs to calm down or he may make matters worse.

You might want to suggest that he does his own post or tell him he can call me.

ahhh, David......your wife is a saint if you were acting like this! I keep telling him to use his powers (stubborness) for good instead of evil and you're absolutely right - the control issue is a big part of this.
I wish he would post or talk to someone besides me....I've suggested that but he's not having it. He was having anxiety attacks pre-RT and pre-chemo too but once he went thru a treatment or two he made peace with it and just went on. He did tell me tonite that he knew he needed to suck it up and get the surgery done but just couldn't seem to do it. I think the meds for anxiety and depression aren't doing their job too well....he's a big guy (6'7") and might need a bit more. We'll see if he calls his doc tomorrow....I'm in my tough love phase right now - if he wants this changed he can do it. I did spend a half hour on the phone with the nitwits at the insurance company today. That's my contribution for the day

And Cecilia....thanks for the rant on the monster...oops, daughter. Misery loves company you know. I'm glad our kids aren't the only boneheads out there.

Cheryl,

Yes my wife was a Saint to deal with me. I will be the first to say I WAS NOT A MODEL PATIENT. At one point soon after my Tx was over and I was really acting up over not going to the ER for fluids, I remember she had had it up with me so she looked at me and screamed FINE THEN, JUST LAY THERE AND DIE!! With that, she turned around and left the room. I couldn't talk so I couldn't call out to her to come back and I just remember thinking, wait you can't just leave me. She did come back in about 15 minutes (seemed like 2 hours) and I went to the ER and I didn't complain to her ever again.

I have been trying to find that Saint part of her ever since then but it must only come out under extreme duress.