| Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Saw this on FB and thought what a great idea as a way for friends and family to get together and support the Oral Cancer Survivor in treatment or about to start treatment:
<<Have you ever thrown anyone A COMFORT SHOWER? "My MIL and SIL threw me a 'comfort shower' to bring together my friends as I am going through chemotherapy and to shower gifts of comfort: magazines, pjs, comfy clothes, books, tea, Anonymous>>
Wish I had thought of this when my son was going through Tx. So many of his friends would ask what he needed and he always hesitated to ask for specific things. At a "Comfort Shower" there could also be a sign-up sheet for specific things needed like a ride to Rad Tx, or picking up prescriptions, laundry duty, etc.
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.)
| | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 |
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2011 Posts: 269 | Very nice! I really love that idea.
Nancy (53 at dx) Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs 7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo. 5/29/13 - Found primary 7/3/13 - TORS 7/8/13 - Emergency Surgery/Blood vessel burst in throat 8/9/13 - Peg in 9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck 10/14/13 - Radiation ended! 11/12/13 - PEG out!
| | | | Joined: Jan 2014 Posts: 14 Member | Member Joined: Jan 2014 Posts: 14 | I think this a wonderful idea. I crochet a lot, and already have more hats and scarves than I can wear. (Not needed much in Southern Virginia). Those might be nice gifts that would cheer patients up, and would be useful. Let me know if you would like me to help.
I am about to have my own surgery on my tongue (not a major one this time). They are going to, of course be doing another biopsy, and I am fearing the worst. Even if my worst fears come true with that, I will have a lot of down time, and can do a lot of crocheting. | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | I know a lot of people (myself included) have a hard time asking family and friends for help, and I know that a bunch of people are financially strained by the cost of treatment in the U.S., so is there anyone here on OCF that might want to be the repository for any donations (tea, blankets, books, etc.) that people might want to give and people could come here for help?
I think some might be more comfortable coming to the OCF family if there were a specific place within this community that they could contact for some help. I am currently involved with 4 different charities, along with full time work, so I would not be able to spearhead this, but it might be a nice idea if someone could?
Just thinking out loud.
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Its a nice idea, very kind! But, this is a very delicate subject. OCF is a 501c3 charity which must comply with strict regulations or it could jeopardize its non-profit status. One segment of the non-profit status is that OCF can not help individuals financially. That being said, Im not sure if this idea is able to be affiliated with OCF or the forum. For something like this to become a possibility, it must go thru Brian and get his clearance. When I am able to, I will check with Brian. ChristineSCC 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 | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Perhaps an alternative idea for anyone that could crochet, knit, or donate other items is to contact an local hospital oncology unit and donate them to oral cancer patients. People donate newborn hats all the time for hospitals and they knit boobies for breast surgery patients ("Knitted Knockers"), so why not donate locally for oral cancer survivors? People have also gotten in touch with others here to donate left-over unused items to each other. My son had a large quantity of left-over canned soups that he gave to someone locally who was surviving oral cancer. Softly knit scarves would be nice for oral cancer survivors. After surgery when my son had drainage tubes, he hung a tie around his neck so that he could clip the drainages tubes to it and have them out of the way. A softly knit scarf would have been nice for this. Also, local items would more quickly get to people needing them and avoid the cost of shipping.
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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