In the UK we have a charity now called The Haven, formerly the Breast Cancer Haven, which I have always wanted to be able to go to. Inevitably is started in London, then they set up one in Hereford and then Leeds. Now they are raising funds to open a Haven in my area, and this news comes hot on the heels of finding that there is going to be a Maggie's Centre in Southampton.
Trying to get to London for early in the day is a long journey by trains packed with commuters, and it also costs a lot of money so it has always been out of the question for me; and yet the approach of The Haven, like that of the Penny Brohn Cancer Centre, is very holistic with alternative therapies, nutrition and Mindfulness Based Stress Reduction meditation at its core. Dr Caroline Hoffman PhD from The Haven was the person who facilitated the MBSR trial that I took part in and which was actually only for those of us with Metastatic Breast Cancer. This was done through Southampton General Hospital where my oncologist is based. This sort of approach is exactly the approach I have taken to learn to deal with having incurable cancer.
http://www.thehaven.org.uk/how-you-can-support-us/haven-wessex-appeal
Maggie's Centres are similar, but maybe just a bit more of a drop in type of place and are for those with all types of cancer. The started in Edinburgh and are spreading. They deal with Financial advice, nutrition, support groups for patients and families, exercise, creative writing etc.
http://maggiescentres.org/southampton/introduction.html
The most interesting thing will be to see what they do for Metastatic Breast Cancer, and how inclusive they would be. I feel very wary of getting involved with cancer related things because I am 'out' about being Metastatic and there is always that awkwardness about now people react to this. I guess it is a tiny bit like being gay and coming out. It's that 'Oh!' moment followed by a silence as their brain recomputes what to say next. It is just a fact of my life; can't change it, so get on with it.
Only a couple of days ago I was having a day dream about winning a huge amount on the Lottery and how I would tell certain people at work to hand in their notice because I was setting up a Metastatic Breast Cancer Centre, probably in the same village that I work in, and grew up in, because of the good transport links. Who says dreams don't come true?
Showing posts with label connection. Show all posts
Showing posts with label connection. Show all posts
Saturday, 21 September 2013
Wednesday, 28 August 2013
Sad :O(
I had been a member of the Inspire forum (Advanced Breast Cancer Group) since May 2009. When I first joined it was an absolute life line to others who had Metastatic Breast Cancer (aka Advanced BC) and gave me a sense of community with others that I didn't have on a personal basis. I live alone and have no immediate family. I don't feel able to ask what family I do have to help me because they are inevitably 'too busy', and I don't want to be a burden to them any sooner than I may become one.
The relief of being able to commune with others who just understood was immense; people that I didn't need to explain how the knowledge that your cancer cannot be cured actually feels like; people who just get it. You are starting from an even playing field. I have met very few of my friends on Inspire as many live thousands of miles away, but I feel a connection with them which runs very deep.
Recently there have been new members who seem to want to be argumentative and strident about their point of view and who just don't seem to get the concept of accepting other points of view. Heaven only knows I have had my run-ins with members over the years, but these new members seem to report others to the moderators using terms like 'mean girls' and turning things into a 'Junior High' sort of environment. Members have been banned because of this when they are expressing an opinion. These new members don't seem to have the empathy or understanding that others might be upset or having a bad day and in my opinion they are the ones who have turned it into a sort of Junior High with their complaints. We are all big girls, dealing with the biggest girl's problem of all - the fact that we have an incurable disease which will probably be the cause of our death many years before we should have died.
Sadly it is no longer a place I wish to be and that is really upsetting. It is now a place that is sucking the life out of me, rather that uplifting me and giving me a sense of community.
Will I ever go back ... right now I don't think so. I just don't need the stress. I don't know if the advocacy work I am trying to do is worth the effort. Hardly anyone ever comments on my posts, and I wonder if anyone is listening, or reading what I have to say. Some blogs get a lot of comments ... does everyone disagree with me? Am I wrong in what I write? Is there any point?
The relief of being able to commune with others who just understood was immense; people that I didn't need to explain how the knowledge that your cancer cannot be cured actually feels like; people who just get it. You are starting from an even playing field. I have met very few of my friends on Inspire as many live thousands of miles away, but I feel a connection with them which runs very deep.
Recently there have been new members who seem to want to be argumentative and strident about their point of view and who just don't seem to get the concept of accepting other points of view. Heaven only knows I have had my run-ins with members over the years, but these new members seem to report others to the moderators using terms like 'mean girls' and turning things into a 'Junior High' sort of environment. Members have been banned because of this when they are expressing an opinion. These new members don't seem to have the empathy or understanding that others might be upset or having a bad day and in my opinion they are the ones who have turned it into a sort of Junior High with their complaints. We are all big girls, dealing with the biggest girl's problem of all - the fact that we have an incurable disease which will probably be the cause of our death many years before we should have died.
Sadly it is no longer a place I wish to be and that is really upsetting. It is now a place that is sucking the life out of me, rather that uplifting me and giving me a sense of community.
Will I ever go back ... right now I don't think so. I just don't need the stress. I don't know if the advocacy work I am trying to do is worth the effort. Hardly anyone ever comments on my posts, and I wonder if anyone is listening, or reading what I have to say. Some blogs get a lot of comments ... does everyone disagree with me? Am I wrong in what I write? Is there any point?
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