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Joined: Jun 2007
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Sweetpea that is so very true. I know a guy in Steubenville that has been living with htis garbage for at least 15 yrs. His brother , that I didn't know had it just died from it a couple of weeks ago. I know it couldn't have been very long but it's possible.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #93951 04-20-2009 11:00 AM
Joined: Aug 2008
Posts: 96
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Dear Patty,
I'm so sorry to hear the news. My husband is also in your shoes at this point. We start Erbitux on Thursday. I will be praying for you and your sister.
Lori


Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
Joined: Jun 2007
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Patty, how are you doing? Hope you are feeling stronger. Hows the doggies?

Here the weather has finally turned to springtime. Hope its a nice sunny day where you are.


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
Joined: Dec 2008
Posts: 1,004
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Patty...always thinking of you. Please let us know how you are when you feel up to it.

love...suzanne


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
Joined: Aug 2007
Posts: 1,301
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I am so saddened by what you are going through and understand that you will only post when you are up to it Patty.
Will be looking out when you do here and on Facebook.
Love and prayers
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

Good1 #94312 04-25-2009 06:17 PM
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Guys I am getting some strength back and getting most of the "have to" stuff out of the way so I can relax. Right now I don't know where I belong on the forums so please point me there if I am not in the right place.

My family other than my sister who has agreed to be my caregiver is driving me over the edge with their total disregard for me or what I want. They think it is ok to just come over even if I said I would not like company today. I am not sure what to do with this mess. I am considering the cannon upstairs and we'll see who can make it down the 1/4 mile driveway at this point - LOL - they are so selfish. Mom's only concern so far - no she has not asked how I feel yet - is the will and what will happen to my house. I always knew that I was dealing with a mother that was not quite right - but I am seeing some true colors here that are just shocking me.

I plan to ask for some professional guidance to be able to deal with this because they are just trying to walk all over me now and I am still pretty dog gone healthy. It is as if what I put in writing does not mean a thing to them. Poor Carolyn will have to deal with this mess - there has to be a way to fix this now.

Anyway I feel better since I vented -

I weigh 93.8 lbs today - up from 91.7 on Monday. I am getting about 4 cans of Jevity in per day and today I did the Cinch/Nutrocalorie 650 cal shake also. It is the first dairy I was able to keep down so now we will work in the Carnation.
Lots of poison coming out of the lower abscess so that is good. And I am sleeping, but not constantly.

Talk with you all soon. Love Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Good1 #94324 04-26-2009 12:14 AM
Joined: Aug 2007
Posts: 1,301
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Patty I have no idea how to answer your post and will leave it to others here who are better at putting their thoughts in to words. Having said that I understand some of your frustrations and only hope that things get a little easier for you.
If venting here makes you feel better....continue doing so whenever you need to which if I were in your place would be often.
Love
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

Gabe #94326 04-26-2009 03:08 AM
Joined: Feb 2007
Posts: 1,940
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Hi Patty
The hardest job of a chief caregiver is also making sure that family and friends understand and abide by the wishes of the one person who matters,that of course is you and in my case it was rob.
He went through a spell where he didn't want to see anyone ,he didn't want to spaek to anyone,he wouldn't answer the phone and i had to stand between him and all the misguided folk who thought they knew better what he wanted and needed.This sort of news brings out the best and the worst,and certainly sorts out the true friends from the ambulance chasers who seem to thrive on other peoples dramas.As for families there was never a truer phrase penned than "you can choose your friends but you can't choose your family"I hope your sister has a thick skin and a firm voice because she will need it.

This is your time Patty and how you spend it is up to you and no one else.Don't bow to peer prerssure about what you should do because no one has the right to tell you how to behave as they have NO idea how you feel,or what you want,but it will be up to your sister to make sure they know.
Rob wanted to say goodbye while he was at home and then come to yorkshire and die with JUST me.His family accepted he wanted to come here but then said we will come and visit at weekends and hsi sister wanted to come and stay.They just didnt get it.As it happened that didn't happen and we didn't get into a confrontation,but we would have done because he didn't want them turning up.Once he was in the hospice evrything changed and because he was pain free and relaxed he entertyained for england and was very happy to do so.
As for legal matters,he asked to get a lawyer come to the house,which i did and i left him alone while he gave her his instructions.He said he wanted me to be his executor which i declined as i felt it was best to leave everything to an independant leagal team who had nothing to gain and couldn't be accused of trying to influence his wishes.

Ultimately patty its your life and its your choice how it comes to a close.Tell the vultures to stuff off and let you do it your own way.

love liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Joined: Dec 2008
Posts: 1,004
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Hi Patty,

I'm so sorry your family is not listening to your wishes. Can your sister say something to them? That sounds so frustrating.

Glad to hear you were able to put on some weight...that is good news!!! It's nice to hear from you and I am thinking of you.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
Joined: Aug 2008
Posts: 96
Supporting Member (50+ posts)
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Joined: Aug 2008
Posts: 96
Hi Patty,
I am so sorry about your recurrence and your family situation. I was my mom's caregiver when she had pancreatic cancer, and I ended up having to put a sign on her door saying "Not feeling well today. No visitors please". Then just lock the door and don't worry about it. YOU come first. Carolyn will have to be your advocate. You can't stress yourself out, she can deal with the family. You are right when you say that Ron and you seem to be in the same place. Just remember, you are not alone. We are thinking of you constantly. Please take care.
Lori


Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
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