MAGAZINE EDITION

WEB EXTRA ARTICLES

EDITION 51 - Spring 2007
Driftwood Self portrait
Creative advertising

EDITION 48 - Spring 2006
The Scottish Council Foundation

EDITION 46 - Autumn 2005
The Value of Support Groups by Ali Bodie

EDITION 42 - Autumn 2004
Coaching - A Support for Doctors in the "Age of Unreason" by Brian McMullen
Death Certificate

EDITION 41 - Summer 2004
It is now firmly established - there is water on mars

EDITION 40 - Spring 2004
The Best in the World....probably!

EDITION 39 - Winter 2003
Tales of a Grandfather - What Goes Around Comes Around
Academic General Practice in Scotland - by Graham Watt
The New Genetics - What Will It Mean For Primary Care? - by Graham Watt
BLEEP
The Full Lecture from Marshall Marinker

EDITION 38 - Autumn 2003
More reviews from the Edinburgh International Film Festival
Going to the Bar by Fiona patterson
Closer Inspection of Juliet's Mammary Glands
Sommerled Fergusson's fort map of the Beauly Firth

EDITION 37 - Summer 2003
FRACTURE TALK - Do we understand each other?

EDITION 36 - Spring 2003
All you will ever need to know about the new contract before you vote.

EDITION 35 - Winter 2002
Behind the Line
His Dark Materials - Philip Pullman
Letter to the Editor - Ken Hambly
Set up your own company - Kenneth Mactaggart
The Tale of an Enthusiastic and Caring GP - by Roddy Shaw

EDITION 34 - Autumn 2002
Donald Girdwood's experiences in South Africa as a GP
6th WONCA World Rural Health Conference
Per Fugelli's lecture - full version
Donald Girdwood obituary

BACK ISSUES

CONTACTS

THE VALUE OF SUPPORT GROUPS

By Ali Bodie
Contact the author via Chris Johnstone by e-mail at christopher.johnstone@ntlworld.com

This hoolet WebExtra article is part of Hoolet Issue 46, where Ali asked her board members the following question:

Writing article for RCGP tonight on online support, what difference did finding this site make to you?

There were 31 replies, from which the following are a selection:

I was in a funk after treatment ended, felt so isolated, so 'other', and finding this site meant I met so many other mortals who had the same feelings as I did, that I realized that I could go on. It was great after months and months of the immortals telling me what to do and how to feel.

Hi Ali......This site gave me a forum for expressing fears, enjoying successes and LEARNING. I was able to do all of that at my own pace, no one staring me in the face, expecting anything from me at any time. I was offered entrance into a local support group, but declined. I'm just not the in your face open kind of person, or at least I never thought I was. Since my diagnosis, I find myself quite free with any information anyone might ask for.....no hesitation or feeling that I must keep this to myself. So, to reacap, this site gave me info and comfort and a life line on my own terms. I didn't join a local support group because I'm basically a control freak who wants info only when I'm ready for it, gives comfort only when I feel like it and was horrified at the thought of being in a room with women who would do the "oh poor me" routine. No time for that!

Finding this site made a difference for me in that if I can give one person a bit of comfort or encouragement, it makes my having had bc worth it. I was one of those who didn't feel I "needed" a support group during dx and treatment. Thought I could handle it all on my own, with just my hubby and kids. Yeah...ok....NOT. I was three years out before I started attending a local support group here in town and it was probably a year after that when I found this site. Actually was referred here by a friend who ended up with bc after me. So glad she had found it! You are all my sisters now....an extended family...all important to me and to each other in one way or another.

Will I am one of those that simply found BC too hard to talk about. But here I could come everyday and talk to people who had been there...done that. It was much easier for me to talk to unknown faces then to talk to my friends and family.

I would say that this site answered my questions and calmed my fears (still does). It made a world of difference in that I could come here and be understood by woman who knew exactly what I was feeling.

I found that going through treatment, I turned into a robot..Went where and when drs. told me to go and did what they told me to. I was fine. I was the "Queen of DeNile" as previously posted. It was after, that I realized that I had just had cancer treatment and then all the questions and fears surfaced. Now that treatment was over, I needed support and I find that coming here I have learned so much and found answers to the questions that I had. No one can understand until you've gone through something like this and the bond that is formed with other women who have gone through this is just undescribable.

There hasn't been any support group for bc patients here to join. I have lots of friends (medical and otherwise) who were amazingly supportive here even though they didn't have bc... but let's face it, aches and pains and medications and procedures are not at the top of their list for conversation at 2 AM when the questions are staring me in the face. The complexity of bc and bc treatment makes us all feel a lot stupider than we are, and being here helps us to understand that and realize we need to help each other to find the best answers.

I have had a chance on this website to reply to questions and to have my own questions answered. But I don't feel like anyone really knows me. And maybe that is a good thing. To be able to bare our deepest thoughts without the worry that we will have to look a person in the eye.

I have gotten much more information from online support groups than from my doctor. The people that know the most about side effects and efficacy of these drugs we get are the people that are actually experiencing it. If most people are like me they don't tell their doc about every little side effect so I think they get a distorted view. I only bother mine with what is necessary. My doc told me I can expect 1-3 yrs to live. I got online and you long termers gave me hope it could be longer. You guys are the "real world". The docs are "text book". Also I am too shy for in person support groups. I never went to one.

Finding this site made me realize I am not alone. helped me overcome my fears, made me laugh, made me cry, made me feel like I was a part of something that is sometimes scary, sometimes maddening, but, always a place to find a friend, comfort, information and sisterhood. A place where i can find the courage to be me...differently, better but me.

I came here right after I had first chemo- Aug 2000. I became hooked on it because somehow, the bond was instant- I felt it.. the questions I could ask, I know would be answered by people who had "been there, done that"- in a way that no doc or other could. And then I couldn't get enough! I wrote a story for local paper that says it all- this was after I first met up w Sandy, and realized how easy is was to pick up and go with an easy friendship, with someone whom you had already shared so much. Then later, I loved being able to be the one on the other side, helping newbies w questions that I had learned my answer to. Still, you always continue to need advice, or have more things crop up that you need suggestions.

This site offered me information and comfort when I needed it. We, as a group, have very big hearts and are very knowledgeable.

Finding this site made such a huge impact on my mental well being after being diagnosed. I'm the type of person that needs to know everything, I research things into the ground, and after finding this site, I didn't need to anymore...every question I had, someone had an answer for. It helps so much to talk to these ladies who have been through it, because others who haven't really just don't "get it", even if they say they do.

i consider this site a godsend. it has given me information, support, and choice,. i've never felt alone with a problem, particularly when going against the medical establishment.

On-line you can pick and choose what you can deal with at any time. If necessary you can avoid people that for whatever reason upset you. The best is 24 hour support whenever you need it.

I wanted some support specific to the experience of breast cancer, not cancer in general. I found the support I needed here and I am thankful for it.

It made an enormouse difference, when I had to decide on whether or not to go ahead with a bilat mast, I was able to hear from many ladies with the same dilemma and who ahd made the same decision. I am glad I had their input, I have never regretted my decision to go ahead. Without the support of the community here, and the vast wealth of information shared, I would not have made it through the dark days of early diagnosis and treatment. I am very grateful and feel blessed to have access to this site. It still makes a difference

Ali, you and others have made ALL the difference, because you shared yourself, openly and honestly. I have openly cried in front of my monitor, gasped at the disparity of treatment among us, and ALWAYS felt SUPPORTED and comforted. My emotions were at times so intense, and gratefully uncontrolled, that given those same emotions, I would not have wanted to drive my car at the end of a structured, time-driven situation.

I could not have made it so far without the help of the people on this site, and one or two others like it. Reason? The amount of medical knowledge and common sense combined. The women here are happy to support, and share their experiences to help others in the same unfortunate situation. I thought I was on my own, but not so. The generosity in speaking of painful personal experiences to help others is awe inspiring. I for one, shall always be grateful.

hoolet is the magazine of RCGP Scotland. It is supported intellectually, financially and emotionally by RCGP Scotland.

This issue maintained by Robert Hallam.