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Joined: Nov 2010
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"OCF Canuck"
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"OCF Canuck"
Contributing Member (25+ posts)

Joined: Nov 2010
Posts: 36
I am sitting here with my coffee looking over the calm autumn lake and find myself wondering "what happened?", to my life? I bet all of you are wondering the same thing!?

Now I am a married, 55 yr old Mom to 2 and bonus Mom to 4 others (kids don't like the word 'step'. 4 yrs ago my dentist found something suspicious on my tongue and sent me straight away to CancerCare Manitoba, Health Science Centre in Winnipeg (Canada). Dr. Paul Kerr said that what the dentist found was actually alright but he didn't like something on the back of my tongue..so off I went for a biopsy then into hospital for my first laser surgery. It turned out to be precancerous, 2006.

They saw me every 3mths and 2yrs later they found something else which they did a wedge resection of, precancerous again. Now fast forward to cancer this year which was complicated by my bipolar disorder/crohn's disease and complicated migraines. 2009 and '10 have been a bust! I was dx in July with SCC of the underside of front right tongue which quickly spread to the floor of my mouth. In August Dr. Paul Kerr layered 1/3 of my tongue off, which is growing back, and lasered all the cancer off the floor of my mouth. 3 weeks later he removed 40 nodes in a right neck dissection, there was one microscopic spot in one node. No chemo no radiation.

When I found this forum a few weeks ago I was thrilled,then I was scared, then I read a bit backed off and came in more and more often. I finally was able, today, to put my story down in print. My husband and daughter and I had no idea about the HVP connection this summer and I still don't know if I have it but I will ask.

When I was 16 I smoked for 2 yrs then for 2 yrs from 1991-93. I have maybe 5 drinks per year, maybe. I used mouthwash for 3 mths...who knew the alcohol in mouthwash is cancer causing??!! What they saw in my mouth is what they see in alcoholics and chain smokers. Like so many pts we were shell shocked.

I high tailed out of hospital the morning after my tongue surgery. My nurse said if everyone did so well they would all be out of jobs. I was only in 2 days wih the neck resection, I was out of bed and walking the halls outrunning the nurse with the heparin needle! I wanted to go home on day 2 but they made me stay an extra night because my drains weren't clear.

If it were not for my husband and daughter I would have folded up a long time ago, they are just Stars!!! I have golden friends who were and are really pulling for me, and I them. If I have no recurrence I will be considered cured in 5yrs, something to aim for. One day at a time for all of us.

The generosity of spirit in here is huge, I think each of you are heros.

Light and blessings to my new family.



55 yrs, Female, smoked for 4 yrs 35 yrs. ago, SCC right underside tongue and floor of mouth, laser surgery took 1/3 tongue Aug 2010, 3 weeks later in Sept right neck dissection 40 nodes removed with 1microscopic spot in one node. No chemo or radiation.
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Welcome to OCF, glad you found us, sorry you had to


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Hi Meggie

I join Eric is welcoming you to OCF. I couldn't help but wonder about your choice of subjects on this introductory post, i.e. "Gimli chick"
My recollection of Tolkein' books is that Gimili's "chick" was the fair Elf-lady Galadriel. Are you commenting on yourself or your husband wink
[Explication for non Lord of the Rings fans: Gimili is a good Dwarf with long hair, a beard and his weapon of choice is an Axe- } {concession to Tolkein purists'. yes in the books Gimli uses the same massive Axe, in the movies his character is altered to use 5 Axes plus uncharacteristicf comic relief.] My favorite Gimli quote was always [quote] "You rascals, you woolly-footed and wool-pated truants! A fine hunt you have led us! Two hundred leagues, through fen and forest, battle and death, to rescue you! And here we find you feasting and idling -- and smoking! Smoking! Where did you come by the weed, you villains? Hammer and tongs! I am so torn between rage and joy, that if I do not burst, it will be a marvel!"
The Two Towers: "The Road to Isengard," p. 162 [/quote]
Keep the Faith
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jun 2009
Posts: 440
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Joined: Jun 2009
Posts: 440
Welcome to OCF!


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
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Posts: 939
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[quote=Charm2017]Hi Meggie

I join Eric is welcoming you to OCF. I couldn't help but wonder about your choice of subjects on this introductory post, i.e. "Gimli chick"
My recollection of Tolkein' books is that Gimili's "chick" was the fair Elf-lady Galadriel. Are you commenting on yourself or your husband wink
[Explication for non Lord of the Rings fans: Gimili is a good Dwarf with long hair, a beard and his weapon of choice is an Axe- } {concession to Tolkein purists'. yes in the books Gimli uses the same massive Axe, in the movies his character is altered to use 5 Axes plus uncharacteristicf comic relief.] My favorite Gimli quote was always [quote] "You rascals, you woolly-footed and wool-pated truants! A fine hunt you have led us! Two hundred leagues, through fen and forest, battle and death, to rescue you! And here we find you feasting and idling -- and smoking! Smoking! Where did you come by the weed, you villains? Hammer and tongs! I am so torn between rage and joy, that if I do not burst, it will be a marvel!"
The Two Towers: "The Road to Isengard," p. 162 [/quote]
Keep the Faith
Charm [/quote]

Charm,

I think it is more simple than this. Her location is Gimli, Manitoba

But I am always amazed at your well-read mind!

Hugs, Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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Meggie, welcome to OCF. Im sorry for what you have gone thru already. I hope that you are healing quickly and do not have to deal with anything like this ever again. Im glad you have written, Im sure your experiences can help others. We do have several members from Canada.

Im not an expert like Brian Hill or Davidcpa on the HPV. But I do want to mention that normally HPV patients cancerous places are their base of tongue or throat areas. Im sure if I am not correct they will correct this info. There is still so much learning going on about HPV.

You are very fortunate and I hope you realize that. You have a wonderful loving family and friends who have all stood by your side. That in itself is absolutely priceless!!! Not all cancer patients are so lucky as to have such support.

Best wishes for a full recovery.


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: Nov 2010
Posts: 36
"OCF Canuck"
Contributing Member (25+ posts)
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"OCF Canuck"
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Joined: Nov 2010
Posts: 36
I would like to thank you all for the warm welcome! Just being in here is comforting now and not terrifying as it was 2 weeks ago. I come in everyday to read and try to familiarize myself with everyone and their situations, I still have post op " cancer brain" so it will take me a bit to remember what I have read. My neck dissection took them 4 hrs and it is taking me the longest time to shake all the drugs, but I am not complaining.

Hahaha an elf...wish I were somedays!! Gimli chick is how people know it is me in chartrooms, we live in Gimli, Manitoba. We are largely a fishing community and tourist town, we are known as New Iceland which is the largest Icelandic settlement outside of Iceland. We used to summer here but at retirement time we made a permanent move...and we love it!

I am slowly getting back to walking outdoors and it is curling season so I can spend some time at the rink and cheer my team on! People seem amazed to have me out and about so soon after surgery but there is no time to waste and I love being out, even if it is for half an hour. I am a bit self-concious about my mouth but that will reduce in time I hope. I set the tone so if I act self assured I figure I will become self assured!lol

Now that my body is healing the emotions are flooding me, been a tough ride this week. I am acknowledging everything and letting it go thru me but the fear is stubborn and really hanging in there.

Time for meds and water, see you all soon. Thanks again for the warm welcome, I really appreciate it.


55 yrs, Female, smoked for 4 yrs 35 yrs. ago, SCC right underside tongue and floor of mouth, laser surgery took 1/3 tongue Aug 2010, 3 weeks later in Sept right neck dissection 40 nodes removed with 1microscopic spot in one node. No chemo or radiation.
Joined: Mar 2008
Posts: 3,082
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Meggie

G'wan", I missed your city entirely with my Tolkein riff. Makes me look like quite the "keener", "eh" ?

Deb

My mom always said that my book learning did not mean I had common sense.

Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Nov 2010
Posts: 36
"OCF Canuck"
Contributing Member (25+ posts)
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"OCF Canuck"
Contributing Member (25+ posts)

Joined: Nov 2010
Posts: 36
I think your book learning is charming.


55 yrs, Female, smoked for 4 yrs 35 yrs. ago, SCC right underside tongue and floor of mouth, laser surgery took 1/3 tongue Aug 2010, 3 weeks later in Sept right neck dissection 40 nodes removed with 1microscopic spot in one node. No chemo or radiation.
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Meggie

Thanks. My last post exhausted my entire cache of Canadian slang that I learned from Stephen Colbert's coverage of the Vancouver Olympics. I'm still sticking with the Elf-lady image though when I'm reading your posts since you are so gracious.
Charm

Last edited by Charm2017; 11-05-2010 02:19 PM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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