#50995 10-28-2004 07:47 PM | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Jul 2003 Posts: 235 | Sorry, I've gotta vent again...at least I'm consistent. So I go to my dad's this morning and I find him passed out on the bathroom floor. Oh, man...my heart rate jumps to mach 5 again. This is the second time this week I've found him passed out on the floor. The other day he fell out of bed and continued sleeping. The hospital bed w/rails is being delivered tomorrow, and I have to insist on someone being with him around the clock. That will be no easy task as he still can be quite stubborn. He's one tough cookie who is hanging on to any independence that he can, and I appreciate that but now it's clear his safety is in jeopardy. Today the hospice nurse told me I'm going to need the patience of a saint in caring for him. Then my brother calls to tell me that my mom stopped breathing during her colonoscopy. I don't know if it was too much anesthesia or what, but fortunately she seems to be okay, and fortunately this day is coming to an end. I'm going to take a Xanax and try to pass out for awhile myself. It's so frustrating to see all of this and not being able to do anything as far as making the physical and mental hurt go away. What I wouldn't give to be able to change all of this.
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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#50996 10-29-2004 01:51 AM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | Didier, dear!
What an ordeal for you.....
...and thank goodness for Xanax, huh? That little pill has helped me get through this bad dream.
Tom and I will be praying for your family - the only help we can offer - I remember helping to care for Tom's father - a VERY stubborn German - and it was not an easy task. I am wishing you well.
Nicki
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#50997 10-29-2004 06:41 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Dear Didier
vent away you`ve earned it...wish we could help you.
Zoloft was the drug of choice for me , used it for nearly a year and was grateful!
Take care
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#50998 10-29-2004 08:21 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Didier,
I only wished you lived a little closer, my friend. I remember how often the nurses use to tell me I needed respite care. No shit! There just wasn't anyone willing or able to just sit with my mom for a few hours while we just got away. My lawn and landscaping flourished because it became my refuge. I had my cell phone on speed dial just in case and just worked my butt off in the hot Texas sun. I swore I would punch the next person who told me I needed a break. Unfortunately, life was not on my schedule. You are a very special person to keep at it no matter what. Even though this is so tough, your rewards will be great and you will never wonder if you did enough to help those who brought you into this world.
Vent whenver you want and let me know if you need anything that I may be able to do from so far away.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#50999 10-30-2004 07:49 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hi Didier,
You are stronger then you think! I can only hope both your parents pain relief is there for them.
You have been such a caring, loving caregiver. You can stand Tall my friend.
My best to you and your family.
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#51000 10-30-2004 08:21 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Zanax is a great drug - I went through a lot of it myself but it is highly addictive so watch out.
In many ways my dad was the same - clung to independence, had strong ides about his care. It did take a lot of patience but I developed a team of volunteers and paid caregivers to spread the burden a little bit and that helped a lot. A psychologist I was seeing commented that my job was not to actually DO everything but rather to make sure that it got done. The hospice folks had contingencies for respite care and that helped me a lot to recenter myself. I was new in recovery then as well (only 6 months of sobriety) so I never took any drugs. I found afterwards that is was a season of intense spiritual growth, not that I didn't have my moments of frustration.
I had one incident where a paid caregiver took off to go to a class (without telling anyone) and my father fell out of bed where he was wedged against a wall for several hours - got a black eye out of it too. I am lucky today that I not serving a prison sentence. I understand your frustration.
I don't agree with what your hospice nurse told you about "having the patience of a saint". It may seem like that at times but it was a real gift to be able to give back to my parents in the end stage of their lives. I am sure that there were times they they had to have the "patience of a saint" to deal with my antics.
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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#51001 10-30-2004 03:37 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | Ooooohhhh, Gary! I was wondering why I still need that little pill to sleep even now. I didn't realize it was addictive, but I guess I'd better find another way to put myself to sleep..... I did love reading your thoughts on "giving back" to your parents. I am always saddened to hear people complain about caring for their family members - esp. parents. I am always equally moved to find those that believe that caring for those that loved us through birth, childhood, adolescence and adulthood is the very LEAST we can do! Love to all of you tonight  Nicki
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#51002 10-30-2004 04:41 PM | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2003 Posts: 235 | Thanks you guys. I was a little surprised when the hospice nurse made that comment. She's a little rough around the edges, it's no big deal. There's nothing I wouldn't do for my parents. It's not patience, it's love and respect.
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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#51003 10-31-2004 08:35 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Didier
When we are kids we take our parents for granted, then we grow up, they grow older and the chain of responsibility changes perspective, we become the carers not the cared for, would any of us really have it any different, I think not. Family love is so special...
Sunshine.. love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#51004 11-12-2004 09:08 AM | Joined: Feb 2004 Posts: 43 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2004 Posts: 43 | What a great way of saying that "It's not patience, but love and respect!" Right on!! Thanks for the remark. Take Care, Tom
SCC Tonsil Rt T3 N2b M0 side DX Jan 04 Tx 36 Rad 3 cisplatin Tx ending May 04. partial neck dissection july 04..... July 15,08 mets to liver Age 57...Did Methotrexate Sept 08. Now on a trial drug Panitumumab, Feb4,09 treatments stopped. going to Tibetan Medicine.
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