| | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | OP  "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Brian has okayed us going forward with the ideas we have been kicking around this week.This was origonally a concept relating to carers,and i very much want to stick with this angle as although i was a registered nurse,my experience is as the wife of a patient not the patient.I am mindful of comments aimed at me by a brash young man ,who i have come to know and love
[quote]I won't take advice from a carer because you don't know how i feel [/quote] Thats fair comment,and because i took this on board i think if we are going to do a brochure for new patients,then it should be headed up by someone who actually has oral cancer.I am perfectly happy to start the ball rolling on the carers brochure,and with the help of my wonderful buddies here i am sure we can do a great job.So we need someone to step up to the plate for the patient/survivors and i need to know who would like to help with the carers brochure and then onto the full manual.
My e- mail address is in my profile so feel free to jump on board,and in the mean time i will start to draft out a content .
Bear in mind the information brochure needs to be short and punchy,when we go onto the manual it will be more detailed and contain quotes and posts from those caring for a loved one with oral cancer.
Well thats the plan any comments/criticisms are welcome.
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | 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 | Liz, you are an amazing person!!!! I know this project will turn out a very helpful brochure. Who knows, this could turn into a best selling book. Best of luck and reach for the stars!!!!! 
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: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Liz,
I think you had the right train of thought from the beginning. There is a tremendous need for information on OC from the caregiver�s perspective. As a patient, there are a ton of places I can go to get information about my condition (OCF being the best of course). Caregivers have so few places to go that handle this disease from their perspective. I expect there are few sources of information on what is going to be expected of them and what role they can and sometimes have to play as treatment of the patient progresses.
I think this should be headed up by a caregiver and primarily directed at caregivers with support from the patients (talk about role reversals). I think that a manual for caregivers from a caregivers perspective, with supporting stories from patients, doctors nurses and the like that can give the caregiver some direction is sorely needed in the OC world.
You hit the nail on the head, give me a hammer, and as a patient, I�ll help build that caregivers manual with you.
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Liz.
We already have the 'Getting through it' project for the patients. Go with your original idea for the caregivers. I'd suggest you include in an appendix some of the blogs you woman kept. Yours, Sue's, Amy's and several others come to mind. It's a great idea Liz, go for it.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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