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#34388 11-05-2005 05:00 AM
Joined: Jul 2005
Posts: 28
dee Offline OP
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My last visit here was 9/25/05. After I logged off, I went back to Moms house. I was horrified at the condition she was in.
I could tell she relieved to have me there cleaning her up and getting the "crust" cleaned from her mouth/lips and gel applied to her HORRIBLE burn on her neck.
There was "stepfamily" involved who had suggested she be sent to a nursing home. That is why I hurried over to her home.

NO WAY! This was MY MOM and no one was going to do that to her (we had asked Mom in the beginning of her diagnosis (July 5th to be exact) of HER wishes and I was going to carry out her wishes if it killed me!)

After getting her comfortable and sleeping/painfree, I completly broke down in another room.
That following morning, Monday, I met with the Hospice nurse at Moms house. They immediatly ordered a hospital bed and all items that would be needed to help care for her in HER HOME just as she had requested.
The care and concern given from the hospice team was like no other I had ever seen in my life. But the reality was becoming even more clear, and I knew in my heart, I needed a chaplain or someone to come and give us some (me) strength to face this stage.
(This was just a personal need and I'm not trying to imply this is what one should do).

My daughter contacted my Brother in Phoenix cause she knew her mom (me) was about to break. Hospice also gave me litature on what stages to expect. With the bed being in the living room, I was able to stay at Moms side at all times and sleep by her on the couch.

The next day, Tuesday, my Brother sent in the troops to help us both. My sister in law and 3 neices. Which, had they not came when they did, I'm not sure how I would be today!
With hospice being invlolved, and help from family including my children, I was able to be her daughter again. We said I LOVE YOU to each other constantly as we both knew we would soon be departed.

On Wed. I had to let her know I knew she had fought as hard as anyone could and that I would be ok.. the family would be sure of that. (She had told me in hospital she couldn't leave her children yet).

By Thursday, she was not responding well and my husband, children and Brothers joined us at the house. Unlike being in the hospital, Moms family was allowed to surround her and display their love and say anything thing that needed to be said.
The litature hospice had given us was SO accurate of what signs to look for and to expect. I really believe it helped me to accept what was going on. Plus we had to call them several times and they responded immediatly.

On Friday, the nurse and chaplain came at our call due to no actual response from Mom. It became clear to me that Mom would not take her final breath while I was there. I believe she KNEW I would not be able to bear that...you see, I believe NOW that I have been in mourning since the day I heard her cancer was unresectable.

I again let Mom know that the whole family would see that I would be ok and they would take care of me. I also let her know I would see her later and I needed to go home and take care of some things that she had been aware of. My Brothers family stayed with her and him and I took the 2 hour drive to my house.

On Saturday Oct. 1st, the month of her birthday, We recieved the dreaded call that Mom had passed. My heart is broke but my Mom is no longer in pain.

I can't begin to describe how spiritual the last week of my Moms life was with all those who had surrounded us, but I believe this has helped over ride some of the grief I feel. I still have pretty hard days but I'm sure that will be that way for awhile.

I had requested donations to be made to this foundation and only pray some were.
In Moms honor, I just can't stress how important it is to advocate to people the importance of people assuring their family members get regular checks from the dentists, and other medical teams including scopes done by ear,nose throat specialists, EVEN and esecially if they have dentures!!!! What started as a "denture problem" for Mom ended in the final stage of her life.
May she REST IN PEACE!

SINCERELY,
Dee [img]http://[/img]


Caretaker of Mom with Unresectable stage IV SCCHN, T1-3,T4..No,N1,N2-3. IMRT daily treatment starting 8/24/05. Erbitux every week starting 8/10/05 and Cisplantin every 3 weeks times 3. Diagnoised 7/5/05 -passed and in peace now on 10/1/05
#34389 11-05-2005 06:32 AM
Joined: Jul 2005
Posts: 28
dee Offline OP
Contributing Member (25+ posts)
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To all that helped, encouraged, taught and comforted me through this journey with my Mother at this site:

I send my heartfelt THANKYOU!!!!
I failed to mention that had it not been for this site from the beginning, I would have not known where to turn, what to ask and how to help Mom.

I would also like to let all those getting ready to go through the radiation part to PLEASE be sure to apply the radiagel (or whatever is prescribed) as often as your told. My stepdad didn't think it should be used as said cause he felt it was causing more of a problem. He didn't understand that you don't wait til you to get RAW before appling. He really felt that gel caused moisture to stay at the site. In his beliefs, the gel caused the skin irritation that lead to the burning. Most treatments require ALOT of care.

Once again THANK YOU all and I will continue to support OFC and am looking for ways to contribute to this cause.

Dee


Caretaker of Mom with Unresectable stage IV SCCHN, T1-3,T4..No,N1,N2-3. IMRT daily treatment starting 8/24/05. Erbitux every week starting 8/10/05 and Cisplantin every 3 weeks times 3. Diagnoised 7/5/05 -passed and in peace now on 10/1/05
#34390 11-05-2005 07:29 AM
Joined: Aug 2005
Posts: 129
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Posts: 129
Dee-
What a touching post that you have written. I am so sorry about your Mom's passing but I am happy that she is no longer suffering. What an incredible daughter you are! You should feel proud of yourself for really being there for your Mom both physically and emotionally. Thanks for sharing your journey with us. As sad as it made me, it was so touching.
deepest sympathy to you and your family
Tami


Tami
Mom has Bot scc stage T1/N1= stage 3 dx 6/27/05 treatment IMRT & chemo (docetaxel, cisplatin, 5FU) ended treatment 8/22/05 Cancer free as of Feb 2006
#34391 11-05-2005 08:13 AM
Joined: Jun 2004
Posts: 85
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Posts: 85
Dear Dee,

I too, was moved by your beautiful posting. I totally understand what you meant about being in mourning since the day you knew that she would not survive this cancer. Today, one year ago, I knew too. I never gave up hope, but I knew that our days were numbered.

Her suffering is over. I am sorry for the pain that you must be going through. Relief in some ways and grief the next. You and I both know that you will be together again and what a glorious day that will be.

My deepest sympathy.

Brenda


T1N0M0 Partial Glossectomy 2/04, Recurrance w/ another P.G. 5/04. IMRTx33 7/04-9/04. T2N2M0 recurrance in throat, 11/04.
2nd tumor 1/06/05, Chemo 1/11-05 Died 02-16-05 Wife: Brenda
#34392 11-05-2005 10:28 AM
Joined: Apr 2003
Posts: 136
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Posts: 136
Dee,

you were a special caretaker and daughter for your mom. nothing can take that away from you, or your mom.

sincerely,
larryb


'01 diagnosis.. jaw hing and base of tongue. surgery not possible. JHU used radiation and chemo to seemingly rid me of the beast. peg for about 19 months. 100 cases of 24 cans of liquid food. 9 months eating therapy. 3x esophagus stretches. non-smoker. previously a social drinker.
#34393 11-05-2005 10:51 AM
Joined: Sep 2003
Posts: 1,244
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Dee
my heart goes out to you, its only 5 weeks since my Mum passed away and I know how hard this all is..
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
#34394 11-08-2005 05:42 AM
Joined: May 2003
Posts: 928
"Above & Beyond" Member (500+ posts)
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Posts: 928
Dee
What a blessing that you were able to be with your Mum, and, make her feel loved and comfortable.
You will never have to say say "I wish I had, or, I should have done."
You were loving arms for your Mum to fly free in.

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!
#34395 11-08-2005 08:06 AM
Joined: Jan 2004
Posts: 1,116
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Dee, my thoughts and prayers are with you, I am sorry to read about your Mom's passing. God Bless and Take Care, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#34396 11-10-2005 04:41 PM
Joined: Apr 2005
Posts: 2,676
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You know, that's the way folks used to depart this world, before "modern medicine". At home, surrounded by family and familiar things. I hope the good Lord gives me that opportunity. All of my grandparents died at home and my paternal grandfather laid "in state" in his casket on the dining room table. [I now have that table- it seats 14 with the leaves in]Dee, you and you Mom were so lucky to have the family support you had. Remember all of the great things about her and rejoice in her life. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#34397 11-10-2005 05:12 PM
Joined: Dec 2003
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Dee,

I know I have said this before but your mother was so blessed to have you by her side through it all. Thank you for sharing the story.

My mother passed away almost 5 years ago. She had a very special friend that was by her side for many years (10+). They did everything together and when I moved my mother to my house, I remember the look on his face as we boarded the plan. I never expected him to live long. Two weeks ago his daughter came to his house and advised him she was moving him to a nursing home and he had 90 days to get everything in order and fill out some forms for her. He was crushed and we have spent the past couple of weeks getting him ready to move here. Saturday he got a notice that his driver's license was revoked by his family writing a letter to DMV and saying he was unfit to drive. I tried to calm him down and remind him he would be well taken care of in a matter of days and we would get everything worked out. He didn't answer the phone on Monday or Tuesday and Wednesday his phone was disconnected. I have been frantically calling lawyers and others trying to find out what happened. He was in a small town in rural Virginia. I called the post office and the lady working there informed me he had a fatal heart attack Monday night. I am still in shock to think he was just hours away from a more comfortable life. He was like a father to me and we talked on the phone often. I missed his funeral service because I found out too late.

Your post about people wanting to push someone off to a nursing home really hit me hard. Sorry for the rambling but I am so angry, so hurt, so confused about it all. He had just decided to move here Saturday and we should be getting him situated in his new room, not reading his obituary.

Ed


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
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.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
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