| Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Hi everyone
Steve's treatment finished yesterday and he was given his mask to bring home. I'm trying to think of what to do with it. One radiation therapist suggested half burying it in the garden so it would freak the neighbours out as they would think it's a body. I'm thinking of pinning it on the fence to scare the dogs next door everytime they bark when Steve is sleeping. Steve likes the idea of painting it. He's always like chain mail suits and all things medieval so maybe we could do something here. Also top of my idea's is smashing the thing to bits. Does anyone else having any ideas? It's a large mask covering his entire head, neck and right down to his armpits.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | WOW, his mask is extra large LOL Mine only covers my face, heck that sure doesn't hurt anything, but might be an improvement. Trick or treat is on it's way and we always need Michaels. Mine is still in the Hospital bag they put it in. Hang it in the window with just a dim light illuminating it.
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: May 2009 Posts: 132 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2009 Posts: 132 |
Chrissy
Stage 2 SCC upper right palate Hemi-palatectomy and maxillectomy 5/28/09 Six teeth gone IMRT x30 starts July 13. Completed 8/26/09 Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | Joined: Feb 2009 Posts: 88 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2009 Posts: 88 | My daughter said she plans on burning it when she get's her first good feeling of finally kicking this cancer in the ---!!!
CG to daughter Brandy age 31 initial dx 10/06 SCC T4N0M0 with bone invasion upper maxillary Surgery 10/06 CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx Tumor board - No surgery to invasive for QOL 35 IMRT 3/30/09 Completed 5/15/09 8 tx Erbitux 3/24/09 Completed 5/6/09
| | | | 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 | Not having radio I luckily do not possess this souvenir!! I did see my one and only real one at the home of one of our OCF family (Tizz) earlier this year. She had it lined with tin foil and used as a lamp shade. Should have taken that photo 
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: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 64 | OCF had a booth that we are gong to take to some dental conventions next spring, to keep pressure on dentists to engage in early detection. Perhaps we should find a place to hang it on our booth, as a representation of what can happen when they do not do their job........ visual is often time more powerful that words to get an idea across.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2007 Posts: 580 | Brian, I'll be happy to give you all the dates of the Canadian Provincial conventions as well as our CDA annual convention. If you plan to attend any of these I would be more than happy to help out in the booth. Cheers, Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend. Live, Laugh, Love & Learn.
| | | | 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 | I lugged mine on the plane to Tallahassee to testify before the Florida House on behalf of the Gardasil Vaccination Bill and placed it on a table right beside me when I spoke and made reference to it when I was describing my treatment due to HPV+ SCC focusing on the male connection to HPV. I was told that my speech was emotional but the Bill still didn't pass. I didn't check my mask and believe me it induced tons of conversations and stares everywhere we went that day. It didn't fit in the overhead.
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 2009 Posts: 51 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2009 Posts: 51 | I had thought of tying brightly colored ribbons in each hole, knotted rug-style. Then it would be a kinda fuzzy brightly colored blob in the room...Dana didn't think this was such a great idea! His just sits in the corner of a room. I do like the idea of using it for Halloween!
Caregiver for Husband, Dana, age 52 DX 11/08, SCC right tonsil, Stage 3 RND, right tonsilectomy, Peg tube installed 12/08 Cisplatin X3, IMRT X35, last TX 3/09 CT scan 5/09 clear PEG removed 8/27/09 1st PET scan clear 9/10/09 Minor surgery to repair PEG site 9/17/09
| | | | Joined: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | "OCF across the pond" Gold Member (200+ posts) Joined: Jan 2009 Posts: 225 | We never got given martin's mask, but I know what he would have done with it... and i can tell you nothing nice. Martin can't even take the elevator in the hospital and walks the long way around because he doesn't like the voice in the elevator and walking through the radiation bit. It reminds him of the bad times. Personally unless you intend on doing talks around schools or seminars, I would destroy it. It's not exactly pretty is it. I suppose on a scarecrow really far from the house would be ok. I am sure it would scare the life out the birds!
Girlfriend to Martin 49 years old at diagnosis Diagnosed with SCC unknown primary June 2008. Cancer found in single node Stage N2A (3 to 6cm). Tonsilectomy 16th june, Radical modified neck dissection left side 30th june. 30 TX radiotherapy ended 9th October First comparative study scan came back clear
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