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Joined: Nov 2006
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Sounds like Matt had a great time with the motorized cart! I can just picture him zipping around the store and enjoying the control it afforded him. grin I'm so glad you have some local support with the daughters. I'm sure it helps Matt to feel very well cared for, and the shared caring is good for you, as well. Sometimes caregivers need caregivers, too! Christine, you are definitely NOT slacking in your duties to "sweat the small stuff". My son sometimes felt I was "hovering" too much, also known as "helicopter Mom". Whatever feelings you have as caregiver are important so if you adopt the "Never let them see you sweat" mode at times with Matt in following his lead, you could still keep it in mind when you report the things that concern you to the doctor (like falling, hi temp, etc.) You are an awesome CG!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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CMMoore Offline OP
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I finally get him to agree to the phone call to hospice, and he tells me he will meet with the nurse to get information, but he wants me GONE while they talk. WTF????

I am SO hurt right now.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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I tried to ask for details, and he just said he was NOT going to talk about it with me. End of story. Either he's very confused about how to protect my feelings, or he's a complete bastard.

Much as I love him, I want to say he's just confused about what I can handle.
Although, he's said before that he didn't want hospice because it was just to help me.
What am I supposed to "earn" by working my ass of?
I was up until almost 3 am trying to finish my day.
He has no idea what I do because he SLEEPS through it all.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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i am completely overreacting. I know this. He loves me, he needs me. So it's got to be something that he thinks I can't bear, or that he fears will make me think less of him.

Today he seems mentally clear, but unable to identify things right in front of him.
His glasses, his crutch... I had to point them out to be found.

I suppose that a met could have already made it to his brain.
This ticking of time goes by so swiftly when there's only so much left.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
Joined: Jul 2010
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Oh Christine...only Matt knows what's really going on inside his head right now and he won't let it out. I hope that he will be able to stop being stubborn and making you feel bad soon before it's too late and you will remember him being mean to you...maybe try explaining that to him? Tell him you want to remember him as the loving man you married and not this way, tell him you understand he is probably scared and putting up this mean defense to protect you. Let him know it's OK to be mad and angry and sad of course and you are here to hold his hand thru it all and be there for him. But who really knows what it is causing if it has gone to the brain...I'm so sorry.


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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Christine - you are right, he does love you and it is so difficult for him to take in everything that is happening to him. I think it is just as you say - that it's something he thinks your can't bear. And that's why he rather you not be there when he talks to the hospice. He's probably afraid he'll break down or get some news or suggestions that will upset both of you. Men just don't like to appear weak in front of those they love. I would allow him what he requests. I know it's not the same, but there were many times when I would hide in the bathroom when I needed to make phone call re my son. I just didn't want him to hear the quiver in my voice that held back the tears while I asked about something re his care. It is such a sad and difficult journey that you are both on. Sometimes there are just no adequate or soothing words. Sometimes it's just a look, or a touch that can convey how much you really care.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Christine, I think about you and Matt more than you will ever know and continue to keep you in my prayers. Just wanted to offer another perspective on Matt wanting his meeting with hospice to be private... I can only imagine the thoughts Matt may be having about hospice which is considered by most to be end of life care. At least in NC one has to be within 90 days of death for hospice to even get involved. IF Matt is struggling with his thoughts and/or beliefs about the last weeks/months of his life, he may have some questions or wishes that he doesn't know if others will understand or support. I'm sure his motives for privacy are not meant in a negative way toward you.

Sometimes people like to put on a brave face for their loved ones and do try to "protect them" by not discussing their fears, wishes, questions about death. This is gonna sound stereotypical but I strongly suspect that many men have a real issue with showing what they perceive as "unmanly" emotions. Like Ann Marie said, they don't want to appear "weak".

Talking about a terminal illness or impending death is very uncomfortable for many people. They don't know what to say or if they should say anything. It's not something we are taught how to handle. Many just walk around the elephant in the living room and pretend it isn't there. Some patients like to live in denial and refuse to believe they are dying (a livelong friend of mine who died of breast cancer with mets to liver, lung and brain was like that - she got madder than hell at me when I implied a month before her death that she was not going to live). Others want to make sure their wishes are honored and respected.

I don't know what kind of conversations you have had with Matt or if he is even willing to engage in that type conversation, but you can let him know that while you dont understand his need for privacy that you respect it, and if you feel emotionally comfortable, you can assure him that you will be there for him without judgement if he wants to talk about his fears, wishes, etc.

Remember, you and Matt are both doing the very best you can with a terrible situation. You are a wonderful caregiver and dont' ever question that. But remember also that you are human and give yourself a break.

Love ya!
D



Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
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CMMoore Offline OP
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The nurse came this morning to talk to Matt. His BIG issue was that he was afraid that if some NEW treatment became available that he wouldn't be able to come out of hospice and try out that new treatment.
He was afraid that it was a one time option.
She cleared up all of his questions.

Last night, he did tell me that he'd been acting like a complete horse's ass regarding the whole thing and that I needed to be involved in all steps along the way. (wow)

Not sure how long until she can get the equipment sent over, but soon there will be a walker, wheelchair, shower chair, bedside facilities, and oxygen. WOOHOO!!!!

The fact that HE agreed to oxygen amazed me. I am SO glad that he realized he will feel better with it.

I look forward to being able to get out of the house for a day WITH him soon!


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
Joined: Jul 2010
Posts: 531
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yay!! Absolutely wonderful AND pretty much what we all said bout how he was feeling too. Probably the nurse helped him feel better about this decision and he now feels better himself and about himself. Woo hoo so happy for you both! Go out and enjoy each others company.
smile


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Joined: Nov 2006
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That's wonderful news! So glad the nurse helped him feel better. Sounds like he was pretty sweet to you, too. Hope things continue to get a lot easier for both of you.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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