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#145752 - 02/13/12 12:11 AM Re: and, the results are back.. [Re: Anne-Marie]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
((((Anne-Marie))) Thanks lady.
And all of you!

I had a terrible day yesterday, his kids came over and he was just brutal! Acted like I do NOTHING to take care of him. At one point he even said "my caregiver hasn't fed me yet"... He'd been awake thirty minutes and I spent that just trying to get him to pee and put clothes on him! He was yelling at me over stupid stuff and eventually I just walked out. Wandered the local grocery as long as possible before coming back.
I was ready to tear into him for treating me that way, but I think his daughters might have done that for me. He didn't ever actually apologize, but he was civil, and sometimes that's as close as it gets.
His mind is slipping a bit. Or mine is. Who knows. We have a mystery prescription pick up/drop off that neither of us remember doing. Although I recall seeing him come home from radiation two days with scripts, he only remembers doing it once. Adamantly, HE DID NOT do it.
I just said, okay, I guess I could be losing my mind, whatever.
His strength is basically GONE. I dressed him for his daughters visit in a sweatshirt and shorts, and after about 5 minutes he told me the shirt was too heavy to move in.
I said "OMG! Butch up will you! It's just a f(*(^* sweatshirt!"
----(classic denial, I want my husband to function!!!)
He then said that it might be time for me to go because things will only get worse.
I wonder if hearing confirmation that he has so little time left has caused him to just sink into it. do you know what i mean? like he's taken the last deep sigh and is just waiting for the inevitable.
It's really REALLY difficult to watch his decline. It's been several weeks since his hip has been a bother, but now he's barely able to walk, fights to maintain bladder control, I am SO ready to get some help from hospice, if nothing else just in the medical equipment that they can bring to help him get around and take care of daily duties easier.
He seems determined to wait for some reason.
Can I call the doc about it?
I've asked him to sign medical power of attorney forms, but he's always had to have a grip on things, he couldn't let me have that kind of control.
I will make it a point to call his doc and ask, as well as talk to him, if I can find him awake and lucid for long enough.

Thanks for listening.
Christine
_________________________
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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#145755 - 02/13/12 01:15 AM Re: and, the results are back.. [Re: CMMoore]
wallyswife Offline
Senior Member (100+ posts)

Registered: 10/09/07
Posts: 104
Loc: London, Ont.
Oh my, and do you ever need some help from hospice by the sound of things. I should think his doctor could help convince your husband that hospice is in his best interests at this stage of his illness. Perhaps an admission for symptom management and if able, to return home with supports in place. This is an extremely difficult time for both of you and I hope you are able to get the help you need to make your remaining days together pain free and peaceful.
_________________________
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.

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#145766 - 02/13/12 05:32 AM Re: and, the results are back.. [Re: wallyswife]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2570
Loc: TN
I've always heard of good things about hospice, but one thing that sticks in my mind is when I heard someone say that going with the hospice decision does not always equate with a death sentence and that some hospice patients actually do get better and come out of hospice to go on to a normal recovery. Something similar happened to my ex-husband when he was very close to his demise. He was in the hospital on life support and had made known his "do not resuscitate" wish. Our 3 children, his present wife and other relatives were all around his hospital bed when the nurse came in to remove the life support. Well, wouldn't you know - he didn't expire as everyone, including him, expected! He was well enough to go home, with his wife #2 (I'm #1) and enjoy going to Walmart in his beloved pick-up truck. They had another two weeks to enjoy some happy, peaceful moments.

Christine, I hope that whatever is in your future, that you and your husband will have some happy, peaceful moments to share.
_________________________
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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#145778 - 02/13/12 04:33 PM Re: and, the results are back.. [Re: Anne-Marie]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 860
Loc: Ohio
Christine, I think that you are doing everything that is humanly possible for you to to, and hope that you can call in the reserves in the form of hospice very soon. As a religious person, my mother was able to say, let go, let God at the most difficult times. My thoughts are with you.
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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#145787 - 02/13/12 10:30 PM Re: and, the results are back.. [Re: Maria]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I will definitely be reaching out for help this week. I haven't had a moment to myself yet today. Woke up, took my son to school, got breakfast for Matt and sat with him until work at 9. 11 break was spent refreshing his drinks, emptying containers, giving meds. lunch break was spent sponge bathing due to terrible sweats that he's been having. mid bath, his ride to the hospital shows up (early) so I rushed to finish, get him dressed, then help him to the van since it snowed here I didn't want to risk him falling. I then had 10 minutes to grab a drink, throw the bedding in the wash and get back to work. He gets home before my next break and it's spent explaining why the bedding is in the dryer and not on the bed because he is freezing.
I grabbed the temp cover that I ALREADY had laying on the bed and covered him up.
PLEASE GOD, let him sleep a while 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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#145790 - 02/13/12 10:55 PM Re: and, the results are back.. [Re: CMMoore]
Shelley K Offline
Platinum Member (300+ posts)

Registered: 08/30/05
Posts: 307
Loc: North Hills, CA
You poor thing Christine...my heart just goes out to you!! I'm glad to see you will be reaching out for help because you need it bad!! Continuing thoughts and prayers for you and Matt.

Hugs,

Shelley
_________________________
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.

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#145793 - 02/14/12 12:00 AM Re: and, the results are back.. [Re: Shelley K]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2570
Loc: TN
You really do need a break, Christine . . . You are doing such a tremendous caregiver job. A little help (or maybe a lot) for both you and Matt would help you both to know you are not alone on this difficult path you are traveling. And if things can be made a little easier for you and Matt - there may be more time for some sweet moments for the two of you. I sure hope so.
_________________________
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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#145808 - 02/14/12 03:12 AM Re: and, the results are back.. [Re: Anne-Marie]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Radiation Oncologist found mass in spine today. Once the hip treatment starts to benefit and pain lessens she plans to begin radiating his spine around the shoulder blades too.
Will double his time at the clinic.
_________________________
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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#145815 - 02/14/12 03:53 AM Re: and, the results are back.. [Re: CMMoore]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8279
Loc: PA
Im sorry you and your husband are going thru so much. Poor guy must be in some terrible pain. Hope he gets some help when the radiation starts.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#145822 - 02/14/12 05:39 AM Re: and, the results are back.. [Re: ChristineB]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
He is definitely in some major pain. I feel at a loss. I don't know HOW to help him. I feel like my timing is always 'off'.
If I go to hug he's gotta shift position, if I want to talk, he's too tired or can't hear me, etc.
I spent a few hours just listening to music tonight, and that was definitely good.

I brought up hospice to him and he says he doesn't see what benefit they'd be.
I asked if he would like me to tell him how they can help, and he got upset. I tried to tell him I didn't feel like I was enough to care for him but I started tearing up and he goes, O great, here we go again...
Hence the few hours alone with music.

God never promised life would be easy.
_________________________
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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