I have a numb bottom and back ache. Been sat here all day long putting some serious legwork (more like brain and finger work) into raising funds to help save our precious online BRCA Support Group, BRCA Umbrella. Ning are closing the free 5000 member option with their social network and forcing a monthly fee on us. We can reduce to 150 members and far less function for the network for free but this is not an option. There are over 650 Members.
What is BRCA Umbrella? An online support group and community for those discovering and dealing with their hereditary cancer risk. I posted this to our BRCA Umbrella Facebook Page and Group:
"Save BRCA Umbrella now. Donate less than a cup of coffee or bar of chocolate. Its safe, secure, its via PayPal. Go without one treat to help our members who face their genetic lifetime risk of cancer (upto 85% risk). We are 1 in 1000 and we need each other. Few and far between but forced to seek sanctity in a place where others know just what its like to face difficult life choices, having a family or not, breast and ovary removal, screening etc. Our future is in your hands. Donate now. Want to sponsor us? Contact us for more details."
I have been contacting potential clients to advertise with us to help generate revenue whilst offering our Members relevant ad links to companies offering services or products they need, such as Mastectomy Bra or Lingerie Companies in the first email wave.
Fingers crossed we get it sorted soon.
Showing posts with label support group. Show all posts
Showing posts with label support group. Show all posts
Saturday, 19 June 2010
79. Save our BRCA Support Group - BRCA Umbrella
Labels:
BRCA gene,
donate,
save brca umbrella,
support group
Thursday, 16 April 2009
56. Time to disturb the mothballs
I am doing my bit for chaity again but I can assure you that doing Race for Life this year is more challenging for me than it is for you to get your debit or credit card out and pledge a LARGE or a small donation online for Cancer Research UK. Check out my page --> http://www.raceforlifesponsorme.org/leighannjones
Me abseiling 200ft off the Civic Centre in Plymouth
Me running (yes running) the Race for Life on Plymouth Hoe (5km)
This year is special. I am meeting with some very special women who have shared their own intimate journeys, feelings, choices..some even photos of their own scars and knowing them has helped me get through this. These women also have BRCA1 or BRCA2 gene mutations, some have unfortunately already had cancer, some have taken the preventative surgery route like myself but all of us have struggled through our diagnosis, the implications of knowing about our high risk of cancer and how it can filter through the family. We have all endured many family deaths from cancer and we unite this year to make our gene known - we go to promote the support site I set up and we need your cash.
Me in my stylish umbrella hat!
BRCA Umbrella - the support site I set up for people with BRCA gene mutations
Imagine if you had to watch your children agonise over whether to have children or not because of a gene you had passed onto them, imagine watching them decide to undergo 10 hours of surgery to remove perfectly healthy breast tissue or wombs or ovaries.
Now imagine a moment when all that had to happen was a gene mutation fix, where family was no longer an agonising worry, where cancer was no longer a threat..for life.
Your money can help research get there.
Me abseiling 200ft off the Civic Centre in Plymouth
Me running (yes running) the Race for Life on Plymouth Hoe (5km)
This year is special. I am meeting with some very special women who have shared their own intimate journeys, feelings, choices..some even photos of their own scars and knowing them has helped me get through this. These women also have BRCA1 or BRCA2 gene mutations, some have unfortunately already had cancer, some have taken the preventative surgery route like myself but all of us have struggled through our diagnosis, the implications of knowing about our high risk of cancer and how it can filter through the family. We have all endured many family deaths from cancer and we unite this year to make our gene known - we go to promote the support site I set up and we need your cash.
Me in my stylish umbrella hat!
BRCA Umbrella - the support site I set up for people with BRCA gene mutations
Imagine if you had to watch your children agonise over whether to have children or not because of a gene you had passed onto them, imagine watching them decide to undergo 10 hours of surgery to remove perfectly healthy breast tissue or wombs or ovaries.
Now imagine a moment when all that had to happen was a gene mutation fix, where family was no longer an agonising worry, where cancer was no longer a threat..for life.
Your money can help research get there.
Labels:
BRCA1,
BRCA2,
breast cancer gene,
high risk,
ovarian cancer gene,
support group,
website
Tuesday, 24 February 2009
41. BRCA Support Group anyone?
Its been a couple of weeks since I last posted, believe me, it is not because of lack of things to post, just very busy dealing with the complications of what is my daily life right now and developing the BRCA Umbrella social and support network site for BRCA+ people like myself. My feet haven't really touched the ground since it was born whilst in the background my operation draws ever closer.
Today, I went to a support group session with other BRCA+ people at the Royal Devon & Exeter Hospital, Force Centre (not in any way connected with FORCE USA, just a coincidence of name). I met my first two ladies outside of my family with BRCA+ gene. We didn't chat in depth about ourselves but conveyed our struggle through the system to find information. Both ladies had already had breast cancer and then been diagnosed with their gene mutation but I am ahead in the race at the moment. Anne Searle is a genetic counsellor and conducted the group, gleaning information and experience from us about where the NHS BRCA support system could do with refining. I think that is probably an inadequate word 'refining'..more like to identify the missing gaps in the system - chasms sometimes.
So much in depth discussion happened during the session that I can only summarise that it showed the enormity of being BRCA+ and the multi faceted problem of living with such knowledge with the consequence of its power to effect the rest of your life, your maternal feelings, your health and your entire family across generations.
All ladies there today are facing their BRCA gene and its risks and the implications carried beyond ourselves, all concerned about the next generation, what to do, how to tell family, what surgery to I have, who to talk to..etc. We had all struggled to find our way into that room today but were very thankful to be listened to. Change is coming.
So, the BRCA gene mutation; a missile, an opportunity to blow the chances of breast and ovarian cancer risk out of the water but with so many bloody knobs and buttons to guide the damn thing to a destination of safety. Sometimes I feel like it might go off mid-flight. I don't want to pilot this thing all the time I would like someone else to please take over for a little while.
I wish I could forget - is there a time when I have been free of this thing? Probably but so long ago I can barely remember..oh, hang on..skipping through fields of wheat with my friends on a summers evening - days when I was free, when I was a child.
Sometimes I worry about my sanity, this BRCA thing is just a sliver of my life yet everything hangs on it at the moment but that will pass and life will continue. I just wish everything else wasn't so complicated at the same time. My poor husband came home today unhappier than I have every seen him. His job makes him so tired yet we need it to keep struggling on financially. Being partially disabled he is tired, worn out, mentally at a crossroads about work yet financially under pressure to be there, worried about his knees and the increasing pain he is in these days, looking after me when I need him, keeping our house, keeping things going and in the background the recurring worry about his son and his ex's selfish behaviour. It just feels like too much. We are both tired. I hate to think what this would be like if we had kids to look after too. Life feels very unstable at the moment, I am grateful to be free of worrying about my children too.
I wish I could change things for us, I am trying real hard. I just feel very helpless in my own personal life whilst my campaign in sharing my and other people's BRCA journey continues in positive great leaps and bounds. I hope that someone reading this who is struggling with their own diagnosis, I hope you reach out to others and share, isolation is very hard and life gets in the way of this thing you are trying to fight too. I have realised that my passion is in trying to make it less of a desert, more of a comfy sofa coffee morning place to find answers and share.
BRCA Umbrella - gather, shelter, weather the storm and on a sunny day - go for a walk back into your life and move on.
Tears today, lots of emotion, sadness for my husband and his struggles with everything.
And the clock is ticking..how many weeks now?
Today, I went to a support group session with other BRCA+ people at the Royal Devon & Exeter Hospital, Force Centre (not in any way connected with FORCE USA, just a coincidence of name). I met my first two ladies outside of my family with BRCA+ gene. We didn't chat in depth about ourselves but conveyed our struggle through the system to find information. Both ladies had already had breast cancer and then been diagnosed with their gene mutation but I am ahead in the race at the moment. Anne Searle is a genetic counsellor and conducted the group, gleaning information and experience from us about where the NHS BRCA support system could do with refining. I think that is probably an inadequate word 'refining'..more like to identify the missing gaps in the system - chasms sometimes.
So much in depth discussion happened during the session that I can only summarise that it showed the enormity of being BRCA+ and the multi faceted problem of living with such knowledge with the consequence of its power to effect the rest of your life, your maternal feelings, your health and your entire family across generations.
All ladies there today are facing their BRCA gene and its risks and the implications carried beyond ourselves, all concerned about the next generation, what to do, how to tell family, what surgery to I have, who to talk to..etc. We had all struggled to find our way into that room today but were very thankful to be listened to. Change is coming.
So, the BRCA gene mutation; a missile, an opportunity to blow the chances of breast and ovarian cancer risk out of the water but with so many bloody knobs and buttons to guide the damn thing to a destination of safety. Sometimes I feel like it might go off mid-flight. I don't want to pilot this thing all the time I would like someone else to please take over for a little while.
I wish I could forget - is there a time when I have been free of this thing? Probably but so long ago I can barely remember..oh, hang on..skipping through fields of wheat with my friends on a summers evening - days when I was free, when I was a child.
Sometimes I worry about my sanity, this BRCA thing is just a sliver of my life yet everything hangs on it at the moment but that will pass and life will continue. I just wish everything else wasn't so complicated at the same time. My poor husband came home today unhappier than I have every seen him. His job makes him so tired yet we need it to keep struggling on financially. Being partially disabled he is tired, worn out, mentally at a crossroads about work yet financially under pressure to be there, worried about his knees and the increasing pain he is in these days, looking after me when I need him, keeping our house, keeping things going and in the background the recurring worry about his son and his ex's selfish behaviour. It just feels like too much. We are both tired. I hate to think what this would be like if we had kids to look after too. Life feels very unstable at the moment, I am grateful to be free of worrying about my children too.
I wish I could change things for us, I am trying real hard. I just feel very helpless in my own personal life whilst my campaign in sharing my and other people's BRCA journey continues in positive great leaps and bounds. I hope that someone reading this who is struggling with their own diagnosis, I hope you reach out to others and share, isolation is very hard and life gets in the way of this thing you are trying to fight too. I have realised that my passion is in trying to make it less of a desert, more of a comfy sofa coffee morning place to find answers and share.
BRCA Umbrella - gather, shelter, weather the storm and on a sunny day - go for a walk back into your life and move on.
Tears today, lots of emotion, sadness for my husband and his struggles with everything.
And the clock is ticking..how many weeks now?
Labels:
BRCA,
brca umbrella,
BRCA+,
support group,
support network
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