| Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2010 Posts: 179 | Alpaca,
One thing i've learnt since diagnosis is that NO ONE is garaunteed tomorrow whether they have cancer or not. In fact some one i know (16yrs old and healthy) recently passed away in a freaky accident with a 3 yr old!!! So we all have to live for today and enjoy what we have.
I think we all on OCF understands how you feel because no matter how positive we all try to be, we will still have days where the fear and worry will get us. But the trick is to not let fear take control of what we have. Live for today and tomorrow will take care of itself.
And i agree with everyone about statistics - they mean crap all. I have never asked about my chances of survival or reoccurrences because no one knows which end of the percentile you will fall into. You could fall into the 80% or you could be the 20%, who can tell you which one you are going to be in. And as we have found out on this forum, many many have beaten the odds!!!
I hope you feel better soon and have yourself a merry christmas.
Minh
35 Yrs old 03/10 SCC T1-T2 Partial Glossectemy end March - margins not clear enough. While waiting for resection - cancer returned,2 new cancerous lumps Re-section End May & flap from cheek attatched. Margins clear. Mid June - 4 teeth out Mid July -32 Rads and 3 Cisplatin 6th Sept 10 Finished Treatment!!
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Hi Maureen, Your surgeon�s comments have been covered by others but I wanted to add a few thoughts on some of your other points. Your journey has been much the same as mine as far as treatment, recovery and side effects are concerned. Mine however was a few years earlier. Maybe in a strange way I am luckier to not have the husband and kids to look to for continued concern and understanding when I was a year or so out. I did however have some family and work colleagues who just presumed that I was clear of cancer (recurrence was in my thoughts but not on anyone else�s radar) and at some stage knew better than to bring it up unless asked. There again it is this OCF family who are the ones to turn to as they understand everything about our fears and concerns. Look forward and enjoy that teaching job next year. You will be great but if you need a shoulder come back here where you will get the support from those in the know Have a great summer Christmas with family as I will too. 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
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Thanks everyone. Over the hump now and back to my normal determined self:) You people are wonderful.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2002 Posts: 642 | Alpaca, I think that all of us who survive the diagnosis and treatments expect "the other shoe to drop" for a good while after we are "cured". I know that I felt that way for a couple of years. But after surviving 8 years, I now think of myself as a regular, healthy person and, even if it is a bit naive, I no longer expect anything bad to happen, and I live my life just like the other people around me,worrying about retirement, etc. It is amazing how many "healthy" people I have already outlived.
Funny enough, I have had just the opposite reaction than you have experienced. People come up to me and ask "how are you doing?" When I say "very well" or "just fine", they look into my eyes, and with a very sincere expression, ask again, something like, "are you really okay?". Then I assure them that yes, I am fine. So, I guess some folks expect you to act like you are "cured" and have that legendary "positive attitude" that all non-cancer survivors think is so important and that we are all supposed to have, and others think that we are dead men walking, living on borrowed time.
In any case, it is great to be a survivor, even for those of us who feel at times a lot more like humbug than Pollyanna!
Take care
Stage IV Base of Tongue SCC Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Charm,
That last quote was awesome.
Eric
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.
| | | | Joined: Apr 2010 Posts: 27 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2010 Posts: 27 | Oh boy could I relate to you Bloop- My last PET scan was not clear and I insisted on a biopsy and found out that that niggling feeling was right, the cancer was back. People always tell me how great I look (70 pounds thinner than a year ago)but yeah, given a choice I would take the fat back and be done with all of this. I was actually accepting for a while but now after all the pain, worry of losing my job, loneliness and isolation from everyone, I too want to be back the way I was. I'm so glad you guys are here.
Lisa from Montana 40 years old squamous cell-left lateral tongue & lymph with free flap skin graft and re-section, PEG tube, Total Glossectomy without Laryngotomy April 2011 Still mouthy as hell plenty of war wounds craving a cheeseburger
***10/14/11 UPDATE--Lisa has passed away | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Cancer is such a lonely disease. Seems wierd in view of the fact that each one of us knows several people who have been affected by some form of this disease? Why do we then feel so isolated?
I marvel each time I walk into our CancerCare Building. I am consistently shocked at how many people there are waiting for appointments, in the hematology lab, chemo, radiation, etc, etc. How can this be, I wonder, when I feel so alone?
I think it is an isolating disease because of the fear the word itself invokes. Cancer. We give that word a great deal of power and what is isolating is our fear. We don't talk about our fear. We don't talk about dying yet each and every one of us will - some day, some how. My surgeon once told me I would die from this cancer - or I would die from something else. Smart man (and a bit of a smart ass).
I think once we share our fear and find someone to talk to, we begin to take away the power we have given that "C" word.
We are here with you.
Donna
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Right on, Donna - Sharing our fears, especially with someone who understands, is much easier to bear. It gives the fear less power. The reverse is also true in that sharing a joy increases the good feelings it brings. I think that's why we are all so happy when one of us has passed a happy milestone in recovery. I can still remember (4 years ago) how my 5 year old grandaughter and I danced around the kitchen when we saw how her Daddy was able to actually taste and enjoy a gourmet jelly bean!
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.)
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