#9154 01-10-2007 07:48 AM | Joined: Aug 2002 Posts: 246 Platinum Member (200+ posts) | OP  Platinum Member (200+ posts)
Joined: Aug 2002 Posts: 246 | Dear Fellow OCF Members and Visitors: I am posting this here instead of under the "caregiver" forum in the hopes it will catch your attention. As many of you know, I am a nurse practitioner who is currently a doctoral student and I am collecting data on the stress of being a caregiver of a partner/friend/relative/spouse with any form of oral cancer for my dissertation. More importantly, I am the wife of David, himself a nurse, who is an OCF member and 4-year survivor of tonsil cancer. In short, I have a firsthand knowledge about this disease and what it feels like to care for someone undergoing treatment. I have also felt the physical and psychological strain of the caregiving role so I "get it". Many of you have answered my call for study participants and have graciously filled out the survey I have sent to you by mail and returned it with your thoughts about the experiece. The data so far has been very rich and I will have LOTS to share with the medical and nursing communities about the stress caregivers are under when a loved one is newly diagnosed, having treatment, or recovering from oral cancer and what we as professionals need to do better to offer support. To date, I still NEED some additional participants to ensure that the data represents the population of caregivers well and makes the study statistically valid. You do NOT need to be an OCF member to participate and there is no cost or obligation to you other than the 20 mins. or so it takes to fill out the survey. Type of oral cancer or form of treatment does not matter-all caregievrs are welcome. You are eligible if you are a caregiver now or have been in the past. Please know that your input is CRITICAL to helping me spread the word about how difficult it is to be a caregiver of a person with oral cancer and what our unique needs are. Data collection will be open until the end to February. Please contact me if you are interested in helping. Many thanks to those who have given voice to their feelings and for helping me honor the caregivers in your lives. KCDC (Kimberly Crocker Crowther) e-mail: [email protected]
kcdc
Wife of Dave,diagnosed with Stage III Tonsillar SCC,August '02
Modified radical neck dissection followed by radiation therapy
'There is glory and radiance in the darkness and to see we have only to look"
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#9155 01-10-2007 08:05 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Kim,
Hard to believe you are STILL working on this!
I will have Susan email you and you can send us both a copy as I was a primary caregiver for my mother when she had terminal ovarian cancer.
I hope you and Dave are well. I still think of the first burger I had in many, many months when we were together in Vegas. I haven't eat too many more but that one was especially memorable.
Take care,
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#9156 01-10-2007 09:04 AM | Joined: Mar 2006 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2006 Posts: 62 | Kim I would be happy to fill out a survey. I am the caretaker for my husband. It has been 14 months since he was diagnosed. My e-mail address is [email protected] Paula
caregiver to Gil dx SCC 11/05 T2N2M0
finished tx 3/10/06 stage 4 rt tonsil,BOT,2 lymphnodes,35IRMT,6 chemo
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#9157 01-10-2007 09:29 AM | Joined: Jul 2005 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Jul 2005 Posts: 207 | Hi Kim, My wife will complete. She was may care giver. Send to [email protected]Thanks, Steve
SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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#9158 01-10-2007 01:49 PM | 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 | Kim, Same here. E to [email protected]
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.
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#9159 01-11-2007 11:11 AM | Joined: Nov 2006 Posts: 10 Member | | Member
Joined: Nov 2006 Posts: 10 | Kim, Email it to me. My sister and I will both fill one out. [email protected]God Bless, Patti
Patti
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#9160 01-11-2007 11:51 AM | Joined: Feb 2004 Posts: 36 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2004 Posts: 36 | Kim, Email it to me at [email protected]. I would be happy to fill it out. Eileen Kennedy | | |
#9161 01-13-2007 02:28 AM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Dear Kimberly -
I've just completed the form and am dropping it in the mail today. This is such a worthwhile project you are doing and I know it will be so beneficial for everyone. Thank you for the work you are doing!
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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