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MTlisa #127116 01-02-2011 10:47 AM
Joined: Sep 2009
Posts: 701
Likes: 1
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 701
Likes: 1
Hey, Lisa, give yourself a break! You can have a shitty downer attitude with us on these boards. We've been there.

You are right that many people don't know what to do or say with this stuff. Can you say that you need them to hang in there with you? Sometimes all we want is someone to listen and be with us when the going gets tough. Your friends would appreciate you telling them what's going on now. To take the pressure off, maybe you can pick one person who can relay your info to the others. Then you aren't repeating the story over and over.

Anyway, you definitely have lots of buddies here. Keep posting.

All my best-
Anita


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
AnitaFrances #127148 01-02-2011 10:23 PM
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Anita is right, Lisa - give yourself a break! There comes a time when you just have to have some good old compassion for yourself and it's ok. When you tell your friends (or one that will tell others) have a list ready in case they ask "is there anything I can do?" And you could start with "I need a hug" or whatever else comes to mind and then some of the more practical (or even fun) stuff like something you need from the drugstore, or grocery store or laundry done, funny movie, etc. You have no idea how much it really helped me to have those errands and chores to do for my son when he was recovering. When your friends don't know what to say, they will feel better just knowing they are doing something to help you. So, start making your list and keep us updated.


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.)



MTlisa #127161 01-03-2011 10:37 AM
Joined: Jan 2004
Posts: 1,116
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2004
Posts: 1,116
Hi Lisa, just read your posts and it breaks my heart I wish I lived closer to you, just maybe to hold your hand....I am here for you and praying, write anytime I am on FB too, Carol Layer


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---
MTlisa #131686 03-20-2011 09:00 PM
Joined: Sep 2010
Posts: 24
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Joined: Sep 2010
Posts: 24
Lisa
I was diagnoised with stage 3 Varucous Carcinoma in July 2010 ..went to have the surgery where I found I had stage 4 squamash cell. I originally chose radiation, but after all my research found that there was a large reaccuance with not so good surgery results After a radiation treatment, so I opted out of rad for the surgery. I have been questioning mself all the time due to the issues with eating and pain on tongue and talking. So many things have been taken from me, I have had a scare this week as the found nodules on my thyroid and on my cheek/nasal areas. I will have to be checked often and I had 19 lymph nodes removed as well. I still have pain and discomfort with my tongue. I feel the same way with my family and friends and due to other medical issues I am very depressed and feel like giving up. I know just how you feel and in fact am trying to get things togeether just in case. I even wrote my own obituary. Everyone tells me to keep positive but it is so hard at times. We have to keep trying and to stay poitive but we have to have the times to greive what we lost in our life as we were young and vibrant and that was taken from us. I hope you get diability - I luckily got it due to other dibiltory issues I am also dealing with. I don't even want to leave my house and I was a very outgoing social person who did a lot of charity work..I miss all that. I would like to hear from others as well to see how they did or are coping with these issues. I don't know if Christine remembers me but she had responded to me last year and I stopped posting ..love to hear!


54 Year Old Female Non Smoker - Non Drinker
Stage 3 Squamous Carcenoma middle tongue, Surgery 9/3/2010 15 hour operation, Neck distention,right - 19 lymph node removed/ok -some tongue dysplasia - free flap/forearm, left arm, skin graph-thigh, lip split/jaw 1 tooth removed/PEG
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