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Joined: Jan 2009
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Good Morning Christine. My heart aches for you and I cry as I read your updates. You are walking a path that no one can understand unless they have been there. Just know that we do appreciate you sharing your journey with us and we are always thinking and praying for both you and Matt. It is an honor to be with someone at the end of their life but it is a difficult journey. Praying for you and Matt for peace and no more pain. Hugs



Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
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Christine,

My heart is breaking for you...you are experiencing what each of us caregivers pray we will never have to go through. Just know we all love you and Matt and I too am praying for peace for the two of you. You are one amazing woman.

Tons of 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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Christine, I am very sorry you are going through this. I have worn those shoes myself, both as a patient and a caregiver for my terminally ill father. Neither was easy but there is no doubt that caregiving is the toughest of all. Between my pain and high levels of narcotics I was quite irrational and delusional at times. Don't let that beat you down, it comes with the territory. Many doctors are reluctant to write hospice orders. In my dad's case he was in Hospice 2 weeks before he died and could have been on it for 6 months. Get on the doctors case to write the order, if he hasn't already. Matt will ultimately be more comfortable, have better quality time and you will get some much needed help and maybe even some respite care. Try to get power of attorney on the bank accounts or they will be tied up in probate (unless they are joint). A living trust (if you own property) is the way to go because a will be end up in probate as well. When my wifes mom died 2 years ago, it took a year before probate closed and she was able to access funds.

Elizabeth Kubler Ross has some great books on dying, death and the subsequent grieving process which helped my a lot when my father was dying. "death, The Final Stage Of Growth" was one. In fact, your grieving process has already started, if for no other reason, you are mourning the relationship you once had.

My father refused any pain pain meds stronger than Tylenol, even though he had Dilaudid and several other high strength pain killers. He wanted to stay in the "now" and was quite lucid until the very end. Of course, this is not always practical with many forms of cancer pain so always remember that the narcotics assimilate into the brain chemistry and try not to take the insults, irrationality and delusional behavior personally. You have to throw out some of the old maps. One day at a time...


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Posts: 280
CMMoore Offline OP
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Posts: 280
Matthew went peacefully surrounded by his family this afternoon.
Touch base when I can.
C


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'm so, so sorry, Christine.


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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My sympathies go to you and your family on Matthews passing Christine.
He is now at peace and with the angels.
Love and a big hug!
Gabriele


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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Christine I am very sorry for your loss! May Matt now rest in peace, free from all the pain and suffering. (((HUGS)))


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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I am so glad you were all able to be together at the end, and that it was peaceful. My prayers for your continued strength and courage in the difficult days ahead.
Maria


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, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Posts: 493
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Prayers headed to you and your family. You were a wonderful caregiver. God bless you.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Love and peace to you my friend.


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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