| | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) |  "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Eric
There are many men and women who pride themselves on their appearance and you are definitely not alone with your concerns about your appearance. What you have been through, and what you have to deal with everyday cannot be understood by anyone but you.
The scars on my body where bone and tissue have been taken from after 2 separate extensive surgeries, once the pain was under control, are not only out of sight but also out of mind, I rarely think of them - scars fade.
Once our nerves or facial structures are damaged and/or reconstructed that becomes a totally different story, one that cannot be covered by a piece of clothing.
In many cases it is not temporary it is permanent. My work and social life used to revolve around face to face contact, meetings, restaurants, dinner parties etc and I loved it. I haven't been able to swallow anything but liquids and mush for over 2 years and it has taken along time to get to the mushy foods because of all the complications from radiotherapy.
While so many people, with good intentions, say don't worry about this and that and tell you that everything is ok, the fact of the matter is you do worry and don't want to see yourself in the mirror like this, and unless someone has walked in your shoes or a partner who is living through this with you, they don't really know.
One thing that everyone does know is that this disease does not discriminate or have any boundaries. It is tough.
I just wanted to let you know that you are not alone and I can relate to what you are dealing with. Stay strong.
Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Karen, that was awesome, thank you.
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Did anyone see that Elephant Man of China story last night. Man talk about dealing with a facial deformity. That man deserves a round of applause.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | THat was good but it was a repeat but who cares,, It was terrible for that guy. I guess we all have our crosses to bear.
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
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