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CMMoore Offline OP
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Equipment was just delivered to our house! Talk about service! OMG!

So, upside downside.... he can't operate the tv remote anymore, has no idea what the buttons do.
Can't operate his fancy "smart" phone anymore.
Tried to drive his wheelchair down the front steps to treatment van a few minutes ago. I had to stop him and tell him to get out of the way so I could move it to the ground level.
Mobility is going to be a dangerous thing.


Upside... I found an adorable mini pinscher that I am considering adopting to be my "friend" through this all.

He actually spat on the floor in disgust when I mentioned it to him, but she is for ME and I am doing it.

Love you you all, and peace.

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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That really was quick service on the equipment! I'm sure it will make things a little easier. And I'll bet having a new little "friend" around will help, too. Let us know how the adoption goes.


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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Please try to remember what Matt was like before OC and let those memories be the ones that define your relationship. He isn't the man with whom you fell in love. He hasn't been the same man since he was diagnosed. Heck, J isn't the same person after his ordeal and he turned up as misdiagnosed. I'll wager that every step on Matt's journey has had some impact on his emotions and has caused a negative psychological reaction.

If you add the psychological turmoil to the physical spread of the disease and the effects of treatment and pain meds, it is enough to turn the man you love into an acquaintance who you really don't like very much...or worse, an antagonist who is about as connected to you as a surly stranger. It's not fun. I can imagine how much of a challenge it must be and I'm terribly sorry you are having to experience it. On top of everything else, he's a man. They are offended by their own weakness sometimes. They can't bear for the people who matter most to them to see them as weak or needy.


My sister was married 24 years before her husband lost his 4 year fight with lung cancer. They were so much in love and were considered a match made in heaven. Then, the cancer and the treatment and pain meds took much of it away. He was awful to her. It broke my heart to hear her repeat what he said to her and to hear how he treated her. But, we all understood what was happening. He was being taken away from her and us. We couldn't judge him. He wasn't the same man anymore. Cancer had taken him away quite a while before his actual death.

It is odd to mourn a loss before it occurs. My father-in-law used to call our house several times a day. When the hallucinations and odd behavior from the cancer mets and pain meds became too much, my mother-in-law took the phone away. I immediately noticed. It was then, with him becoming out of touch with us, that I started to mourn losing him.

Cancer always takes them before we are ready to let them go. Often, cancer takes them before their body is ready to let them go, as well.

My thoughts and prayers are with you and Matt. I'm glad you have decided to get the dog. It will bring you lots of joy, a nice diversion, and the loving loyalty that you need right now.

xoxox
Sandy


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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CMMoore Offline OP
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Sandy - you phrased that right on, cancer does take them before their body is ready to let go.... however, his body is defintiely letting him down lately.
I cannot count the falls he has taken. And I fear that he isn't getting adequate care right now with me working, even if I am at home.
He is stubborn and willfull still wanting to do for himself and when he falls or has an accident he gets pi&&ED.
I am not sure what to do, but the hospice social worker comes wednesday and I will get some advice.


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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Christine, I always read your posts but dont always comment. I cant imagine how difficult this is for you. Just know you are a great caregiver. Im sure its very frustrating. Ive always thought of caregivers as true angels here on earth. You certainly fit that bill. Good luck with your Wed. meeting.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
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 xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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me too. I have been keeping up with your posts and crying with you. I'm so sorry it has come to this, but you are teaching us caregivers along the way. Thank you for sharing your journey with us. You are a warrior. Know that you are loved!!
Blessings,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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CMMoore Offline OP
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Last edited by CMMoore; 02-27-2012 10:52 PM. Reason: tmi

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 2009
Posts: 280
CMMoore Offline OP
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I feel inadequate to teach anyone, but if anything good can come of this journey, I praise God for it.
It's good to know you are there. I appreciate the comments, even the ones when you don't know what to say. It is good to know I am not alone.

Love,
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.
Joined: Jul 2009
Posts: 280
CMMoore Offline OP
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I have a question to put out here to everyone...

How informed would you make the daughters (in my situation)?
The youngest is holding onto her faith and praying with her church group, the eldest seems to really be in denial. If he fails to complete a sentence or gets jumbled up it will make her tear up.
Should I tell her, that's the easy stuff?


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: Aug 2007
Posts: 1,301
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I also am reading everything you post and am so sorry for what you are going through....I am just wondering how old are these girls Christine?
Sending you another big {{{hug}}}


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

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