| Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | 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
| | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2005 Posts: 307 | 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.
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | 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)
| | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jul 2009 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.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | 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.)
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | 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
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Christine I am very sorry for your loss! May Matt now rest in peace, free from all the pain and suffering. (((HUGS))) ChristineSCC 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 | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | 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.
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | 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.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | 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.
| | |
Forums23 Topics18,209 Posts197,040 Members13,222 | Most Online614 Jul 29th, 2024 | | | |