I’ve just joined Sweet Louise this week. This is a support network and services for woman with secondary or metastatic cancer. I am both extremely happy and extremely sad to join this group.
Why did I join when I am in remission again and hoping to stay there? Because I need to meet more women who are living with the same threat level that I am. I joined the local Breast Cancer support group last year and have not made it to any meetings while I’ve been at Uni this year. I attended my first meeting in about 8 months last week and was extremely disappointed in the other members attitudes towards me. The group is a long established group with most of the members having been part of the group for 10 years or so. They are for the most part early stage survivors. Some of the group almost seem to actively avoid talking to me – as if aggressiveness of IBC or recurrence is catching or something. Only three of the ten women that were there actually wanted to know anything about where I was at or even want to talk to me 1 on 1. One woman that I did talk to hadn’t known that I had had a recurrence and was still having chemo when I started uni this year. And as soon as I bought it up she changed the subject… I came away from that meeting feeling more alone than ever.
My friends and family are wonderful and the IBC international support network on the internet I belong to are equally supportive… but I long to meet more women face to face that are in the same place that I am in – that live under the same “threat level”. And that is what Sweet Louise will bring me…. it doesn’t mean that I need to talk about it all the time or make it all about me… but that if it comes up in conversation I dont need to shy away from it either. This is the bit that makes me very happy about joining.
The sad bit is that there was no question mark about me joining this group – If you self refer or get referred by the oncology department, you are not accepted unless someone in the medical profession has verified you have metastatic cancer. Ever since I have had my recurrence I have been psychologically comforting myelf with “it’s just a regional recurrence – it’s not metastatic!” and when my cancer society nurse suggested that I join ‘Sweet Louise’ at the diagnosis of my recurrence I was very sure I didn’t really fit the criteria for belonging. But deep down I have known that the way they are treating me, herceptin indefinitely – scans every 3 months is exactly the same as if it had spread to my other organs and they had got me back in remission and that medically I was regarded as metastatic because the nodes that popped up in the recurrence hadnt been involved first time round.
I am going to go to my first meeting next Friday. I’ll let you know how that goes.
The other interesting group I have been invited to join is ‘Mothers with Cancer’ this is a collective of women mainly in America who blog about their cancer journeys and the impacts it has on their families and their role as mothers. Most of them have individual blogs like I have ‘Get Out Gertrude’ but they also post on the collective one. I have followed this blog ever since diagnosis, although my children are older and have now left home, to see how younger kids have managed or been managed to deal with their mothers illness because although YD is now 21, her functioning age is so much younger, and the same things fit with her that would fit with your average 5-8 year old.
I haven’t done my first posts over there yet – that will probably happen in the next week or two. I have to write an introduction to myself and tell my story thus far in a couple of paragraphs for introduction/profile page and my posts (stories) there will be a mixture of posts that will appear on “Get Out Gertrude” too (cross- posted) and posts that are unique to the Mothers with Cancer blog.
I’ll post my first post there on here as well so you can see it.