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.

LOL! Now that was the best laugh I've had all day. Sainthood under extreme duress......I like it

Cheryl

My RO and MO were all hot to trot on me getting a Neck dissection after Radiation and chemo, Like your husband, I just said NO and refused, Luckily for my caregiver wife, my ENT surgeon backed me up based on a clean MRI. I was dead set against a neck dissection because at least half the time, all the nodes are just fine.
Now I did end up a neck dissection the second time around since I was having so much surgery, it was a piece of cake in comparison. Even so, out of the nodes removed, they were all fine except for one necrotic one. (killed by radiation but potentially dangerous).
Good luck as I know just how terrible we men can be during this treatment. I think you are right that he needs bigger doses of pain pills if he is 6'7". Ask his doctor about a nice 75 mg Fentanyl patch. I am only 5'11' and my dosage is a 50 mg patch It really does help to have a constant level of pain medication coursing through you, I remember the ups and downs and manic behavior well. I hope the PET scan works, I found MRIs more reliable in finding cancer

[quote=davidcpa]
Yes my wife was a Saint to deal with me. I will be the first to say I WAS NOT A MODEL PATIENT.

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

I think Lamont would disagree with you, David!

Charm...I really feel like someone ought to nail my other foot to the floor because I'm just going in circles with the docs. Too many fingers in the pie I think and there's only one RN that's getting what I'm saying. Mike is terrified of surgery and he's terrified of not getting it. His anxiety and depression are out of control. At this point they will either have to premedicate him so I can get him in the hospital or I'm going to have to whack him over the head with a hammer and drag him in. Tough love of "fix it yourself" isn't working and frankly I'm worried that he's going over the edge. So unless the weekend brings an epiphany, I'll start calling docs again. I just want him to pick one course of action and stick with it. Just make a choice. He's on Ativan 2 x daily and they are switching him from Zoloft to Lexapro. The only pain pills he's taking is a lortab at night to knock himself out because he's not having any pain - except the emotional/mental pain.

David, sounds as tho you've been called out by Catherine

Tell him to do what the Drs think is best after he thinks it over, I took care of myself thru most of my treatments all but mostly my daughter being with me thru surgery. It was a rough road alone. Tell him you will let him do everything himself if he doesn't straighten out so you can relax some. He needs you and is frustrated for being helpless in an unknown.

No, I'll be the first to admit that she is the Understudy to St Francis, Patron Saint of Animals...... just not Husbands.

Yes, Lamont would agree but so would:
Buddy
Sandy
Buttercup
Rocky
Sadie
Marvin
Squirt
Tommy, and
Clifford

Those currently reside with us.

Then there are:
Pugh
Jay
Scout
Darma
Daisy
Bubbles
Sally
Pepper
Beige
Rufus, and
Susie

Those currently reside at her Mom's house.

And lastly Annie who resides at my office and is the mother to Sally and Pepper.

Now do you see why I object to ANY new animal?

I must have been mean and nasty like everyone elase, but I sure don't remember doing anything mean to anyone. The best part is I can't get anyoe to te me what I did to be mean. I have been told about seeing pink elephants out of my hospital window LOL That isn't mean, that is seeing things,LOL I hate living with things noone can explain or relate to me that I supposedly did when in LaLa Land.

Just remembering something about Lala land.
Martin After his operation kept asking me where he wsa supposed to put the book. He was lying in the hospital bed then. Where the books arranged by alphabetical order? What book? Where?
The morphine also made him see a bodyless hand, the hand kept coming to pinch the staples in his neck while he wasn't looking. It lived underneath the curtain. It was funny, but not for him, he was terrified of the hand and asked to be given less morphine.

Bubbles?

Bubbles is a cat.

When we first opened our restaurant I built a laundromat next door which we called Charlie Bubbles. My wife found two sibling kittens in the laundromat, one male and one female, which she named Charlie and Bubbles. Charlie died several years later with cancer and Bubbles is still with us. When the laundromat equipment needed replacing 7 years after opening, I changed the laundromat into a Cigar Bar which complements our Cuban restaurant much more.

David - just passed along your restaurant info to some friends of mine who live in Lakeland. Told them they should come and check it out.

I can't say we've had an "epiphany" but by golly we've got some progress with the change from Zoloft to Lexapro! My H was almost himself this weekend - actually laughing and doing some work around the house. He has to take lots of breaks but got some things done. He also asked if I would call about rescheduling his surgery. I think the fact that he received his long term disability insurance papers in the mail this weekend and the requirement to file for SSDI with that have got his attention.

Only 2 months post Tx and it's perfectly normal to still be weak as a kitten. I would imagine his muscle mass took a big hit during Tx. Is he still pressing for a new scan before deciding/allowing a ND? With all these delays he could have had one and gotten the results back already.

What he wants/wanted is a petscan. They won't schedule one until he's 12 weeks out of treatment - bare minimum. It's scheduled for 6/12. In the meantime, the Lexapro has helped a lot and he's wanting to go with the ND. Surgeon wants to see him before he schedules again so he has an appt with surgeon on 6/10. Guess we'll decide which way it's going from there. Will be a full week - my mom has surgery on 6/8, hopefully outpatient. No rest for the wicked and I must be very, very wicked - also, school ends and that means one more little kiddie at home.

I dont care what anyone says...Radiation HURTS LIKE HELL!! It burns, it makes you scared to go...and whats worse is, the nurses and radiologists see it 100 times a day so its almost impossible for them to give sympathy and understanding to ALl patients. That said, it was designed JUST FOR MY CANCER...so SOMEONE has spent a LONG time working out what was best. It worked...so far anyway...I am not going to jinx myself by sayin I am cured...but so far...its gone. The poison from this treatment however is another matter. Two years later despite my being free of the tumour and its friends (the cells)...I still suffer from radiation poisoning and my tongue is still painful and a bit swollen. The Professot who did the op tells me (now) that SOME people suffer for longer than others (the effects of radiation) GREAT. Now my only problem is getting enough painkillers to tackle the pain. Because it is nerve pain, neither me nor my Dr knows what to do. His main worry is that I will become an addict...I DONT CARE about being addicted to these drus as I will deal with one problem at a time. I just wish the FACTS were laid on the table FIRST UP! NOT 2 years later! Grrrr. On the days the Govt decides I cant get enough of the drig I need to enable me to talk and work, I sound drunk. GREAT! Maybe I will get drunk and sound sober? Ho hum...as you can see...its NOT a good day and I have another Drs app today and am preparing myself for him to ask me the same old questions "have you TRIED to reduce your meds?" To which my answer is YES but then I am in pain and sound drunk. He then gives me either one months supply...or 4 days supply depending on that one call to the AMA. Sooo I spend my entrie life organising my life around Dr appointments and pain specialists (who always tell me the same thing....they should just leave a recording!) Tell me what are you all taking to deal with the pain and movement of your tongues with these problems??? Bless you all Love Lyn xxxx

Oh and by the way...sorry about the spelling mistakes...I was frustrated and in a hurry to write my thoughts down...I am sure you all get my meaning Lyn

Lyn - I can't answer your questions regarding pain meds given what you've been thru. My husband has only done radiation and chemo and did not have to have any removal of tongue tissue. His pain has been minimal and Lortab has taken care of that so far. However, the anxiety and depression has been our demon. Ativan has helped with anxiety and he's being changed to Lexapro for depression. This disease works on the body as well as the mind. Like you, this talk of being an addict to anything can take a hike - one thing at a time here and getting through it is #1. I'm sure others will chime in soon with advice on pain. Good luck and believe me, I feel your frustration!

Hi Cheryl,

Could H have a twin? You bet! Tom went through this but I seem to have convinced him to take his BP meds throughout but... 2 months post-surgery (dissection) he has stopped taking his meds...albeit because he just went back to work and they make him tired. His cheeks are again, flushed and last nite I told him he has to take them if he wants to survive. One more thing you might try...I ratted on him. Told his oncologist and she said no meds, no treatment..she even called his cardiologist. He was embarassed but it worked. He has even told me that he will not go through any more treatment at this point. Have him spend a little more quality time with his kids. We had a small miracle happen when my daughter gave birth to our first grandson and Tom responded with joy. He wants to be there to see all and he adores his grandson (and he was not the most responsive father when the kids were small). One thing my hubby has going for him is that he has a tremendous amount of faith. He feels that he brought this upon himself and he feels that he just received a heavy tap on his shoulder.
Now I know that you are overwhelmed (and you sound like you have your hands quite full, just remember that it could have been ALOT worse. Believe me, I fully understand your plight...Tom was out of work for 9 months and I could not work due to my own issues.
I hope that I may have helped you in some way. Please try to encourage him to take his meds...the neck dissection is neccessary for him to fully recover. He will eventually regain his strength and will regain some taste...it is up to you to try every single thing that you can to get him to eat healthy and get in as many calories as he can. Tom refused Ensure until now, realizing that the feeding tube kept him sustained during and some time after treatment. He got his PEG tube out after one month post-dissection. That happened because he wanted it so badly and so did I.He felt more whole and it greatly changed his attitude towards getting back to life "as usual".
Good luck. Email me if you need any more help.

Cheryl, does your husband take the liquid lexapro? I take liquid Lortab for pain. I have a few small issues with some open spots on my gums that can hurt like heck. Especially when talking all day at work. Like Lyn said, he could have pain for a long time. There is no reason for anyone to live a life in pain when there are medications to help.

Hoping all goes well with yoru mother next week. You sure have alot going on. Make time for yourself even just a few minutes per day to catch your breath.

Christine - did you say that you take Lexapro for pain? This is a selective seratonin reuptake inhibitor that is used to treat depression. Did you mean that the chronic pain creates emotional issues that the Lexapro helps you with? Just curious, and want to be sure that people don't mistake this for something that is a pain killer....

Oooops!!!!

I am so sorry, got the name wrong. I dont take Lexapro. Its hydrocodone which is the generic for Lortab. Thanks for catching that Brian.



I tried to delete the other post but wasnt able. I dont want anyone to get confused.

Donna,

You might want to consider Carnation Instant Breakfast VHC as it has 560 calories in the same small can so you get more bang for the effort.

Also it really helps if you could add a Signature Line so we know where your Posts come from so to speak.

Donna, get some GNC weight gain,, 1850 calories in a serving of it, I bought a container at 75%off at rite aid.

What a difference a few weeks makes and thank you all for letting me rant and responding with encouragement. Mom's surgery was outpatient, successful and she's out running around already (tho a bit slower but for 77 years old that ain't bad). Mike saw the surgeon who wanted the petscan done as he is now 3 months out of tx. ND is scheduled for Tuesday. Petscan was today and was clear except for the lymph nodes in his neck that are coming out Tuesday. They can't tell from the pet if it was still active disease or dead tissue but it's comin' out Tuesday anyhow. The Zoloft is a thing of the past and he's doing well on Lexapro.....it's like having my husband back again! I managed to get more OCF stuff into another dentist's office this week and more will go to the hospital next week as Mike's surgery is not at the same hospital where his chemo and RT took place. There is something to be said about getting to the end of your rope and tying a knot

Congrats and lets hope all goes as planned next week.

Yay cheryl
you go girl....carers deserve a pat on the back too lol

love liz

I would say they deserve more than pat after doing this stuff myseld Liz, LOL give em what they want and smile.

I am sorry that you are having to go through this. So sad. I have no answers except prayer.

yippeee - surgery is over! Everything went well. Neck dissection on both sides, piece of the jugular vein removed left side. Pathology report won't be back until Monday or so but they did the extra blast of radiation so even if there was something there it's been treated. We're still at the hospital - likely until Friday. Mike's got some swelling on the left side, some problems swallowing solids due to swelling and three drains in. He's sitting up, getting ready to get out of bed and all in all is doing well All the docs are really happy with themselves (and they should be). This morning we had a visit from the pet ministry - cute little fella.

I am so happy to hear that you are doing well. And that your spouse is too! I needed to hear some good news today.

That's terrific news.