Previous Thread
Next Thread
Print Thread
Page 1 of 4 1 2 3 4
Joined: Jul 2009
Posts: 453
WendyG Offline OP
"OCF Down Under"
Platinum Member (300+ posts)
OP Offline
"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)
Offline
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)
Offline
Senior Member (100+ posts)

Joined: May 2009
Posts: 132
Chia pet?


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)
Offline
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)
Offline
"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 crazy


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)
Offline
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)
Offline
"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)
Offline
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)
Offline
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)
Offline
"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
Page 1 of 4 1 2 3 4

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,264
EzJim 5,260
Brian Hill 4,918
Newest Members
Monty001, Tim808, Alexander93, Amary96, Annrnyc
13,292 Registered Users
Forum Statistics
Forums23
Topics18,235
Posts197,106
Members13,293
Most Online1,788
Jan 23rd, 2025
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5