#66568 12-31-2007 08:30 PM | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | OP  "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | My sign in name - Pandora - refers to the Greek my mythology wherein Pandora was the first woman and as such, was given many unique gifts which she stored in a box.
According to the myth, Pandora opened the box and released all the evils of mankind
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Donna I like the meaning of your name. Yes, we all have hope and no lifetime guarantee on our body parts. We just have to maintain and move forward. Our family here seems very good at that with the support and hopes given to us here.
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
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Donna,
One of my favorite poems is the one by Emily Dickinson about hope:
hope is the thing with feathers
that perches in the soul
and sings the song without the words
and never stops-at all
(I'm reproducing this from memory so I may not have it exactly as she wrote it but I know I'm pretty close).
I actually bought a Christmas gift for myself that is a necklace with a small silver disk with a bird on the front and on the back "hope is the thing with feathers that perches in the soul". It seemed like a good reminder to me not to give up on still improving my swallowing ability, having a less sensitive mouth, etc.
I know hope alone isn't enough but without hope, the other stuff seems pointless.
Nelie
Last edited by Nelie; 01-01-2008 04:52 AM.
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Nelie, when you eat does your tongue hurt you for 3 or 4 hrs after? Mine drives me crazy anytime I eat . it feels like someone with spikes on their feet is tap dancing on it. LOL Not really funny , but that's my way to laugh at it. Then I either get so dry I can spit dust or goes the opposite way and I need a bib for the slobers.
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
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Jim, It doesn't always hurt after I eat. It depends on what I eat--but I'm pretty limited in what I can eat without it hurting, aside from the limitations in terms of what consistency of things I can swallow. It's frustrating and I constantly worry the pain is a sign of a recurrence though so far my ENT does not see anything.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Nelie,
Where did you find that necklace?
Also, could we chat sometime about your post tx issues? Seems like my mom is going through something very similar.
Thanks.
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Donna,
When I first saw your handle-Pandora- it made me smile. I thought of the same message you wrote about, and I also thought of one of my first horses, Pandora. She was beautiful, strong spirited and full of a zest for life!
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Donnarose Here is a link to it. I was ordering other Christmas gifts from the catalog or I probably wouldn't have gotten it for myself but it just spoke to me! http://www.signals.com/signals/Jewe...ickinson-Necklace_HE6742_ps_cti-1FG.htmlI would be glad to talk to you about your mom but I have to say she is very recently out of treatment compared to me and I suspect she'll get better as time goes by. Also, I don't know how much help I can be since I haven't found anything that really helps my sensitive mouth that much. Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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