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Joined: Aug 2011
Posts: 596
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Joined: Aug 2011
Posts: 596
Thank you for those posts, Charm. You have brought up some excellent points about hospice. Care and comfort are the main concerns for the hospice patient. Like you said, the QOL can be much better than people think, rather than suffering through treatment, only to prolong life a little longer (with poor QOL). Thank you for sharing those links and your honest opinion. Sometimes it's just what people need to hear. Every patient is different and Laurie's mother seems to know her limitations. It is her decision and an informed one.


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Jul 2012
Posts: 8
LaurieA Offline OP
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Joined: Jul 2012
Posts: 8
Thank you all for continuing to give such great information and support. I know it can't be easy when you are or have gone through this to think that someone would not want to fight with everything they have.
Christine, I did go over your suggestions and she is on a pump. We'll continue to work on getting her what she can tolerate.
The one post made me completely freak out describing the end as we haven't gotten details about facing that yet. But we need to know so we can help her and prepare ourselves and the grandkids.
My sister and sister in law will go with her to the medical oncologist tomorrow and I hope they can ask the hard questions but also get a good referral for hospice. If the doctor has some more info about her ability to handle treatment I'm sure she'll listen but we'll just have to see.
I had to come home for a few days as I'd been gone for a week but I will go back as often as necessary to help. It's only about a two hour drive for me but it makes it hard just to be there for a short time. Other family members live within a couple miles and we've developed a schedule so she has not been alone at all since this began.
My sister was hoping to get her out this weekend to a fun antique shop area near her that they like to go to.

Joined: Aug 2011
Posts: 596
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Getting your Mom out for some fun sounds like a good idea. A positive focus can do wonders for the mind. I hope she enjoys herself!


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Jul 2012
Posts: 8
LaurieA Offline OP
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Joined: Jul 2012
Posts: 8
It's been a busy week. My mom's brother came out from New York with his wife for a week. They stayed at my brother's house and spent each day over here. They really enjoyed spending the time together. Most evenings other family members would gather here for dinner. She enjoyed the company and does perk up when people are here but is glad to have her peace and quiet back.
She is much more tired today and it was the first day she used her oxygen and morphine. Hospice is fabulous and helping her and us through this.

Joined: Aug 2011
Posts: 596
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Dear Laurie,

I'm so glad to hear it. It sounds like the best case scenario for such a hard time in life.

Best wishes,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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