For the last two years or so I have become part of the cancer blogging community. I guess like for most of us who started writing it was a way of raising awareness of cancer issues, whilst also going through your own treatment. It meant that on days you felt unwell, you were able to do a bit of writing, so your time wasn’t totally wasted. There are many in this community who were in fact journalists or writers themselves before they got sick, but most of us just took to the internet with no prior skills, to let others know about what we were going through.
When I first started I had never written anything before and was concerned that people were going to compare my work with others, but of course, every story is unique, and told differently. Since then, our online communities have expanded rapidly, and it is more unusual to find a person affected by cancer that does not write about their experience. In the early days I felt strangely isolated, as I was totally unknown online, but this wonderful community of which I am a part of, very quickly embraced me as their own!
As the months went past my bond with the online community grew stronger, as we all shared experiences. Many became people who I felt I ‘knew’ well, after all I probably knew better how they were feeling at times, than their family! There was a strange kind of comfort that sharing your experiences brings. When I am having my own tough times, I never feel alone, as there is always someone online to help me through. I have lost count of the number of chemotherapy and radiotherapy sessions I have experienced from others, and the mixed emotions we all share. At times I’m sure I feel the anxiety of other people’s treatment as much as they do!
My blog has now become established along with many others, and through our work we get invited to various presentations, and I have had the honour of meeting personally, many of my online friends. It is always great to put a face to a name and understand more about what motivates that person, but that is the time things become real, and the bond you share gets closer.
Of course, cancer is the common glue that binds us together, but it feels a whole lot more than that, and what has prompted this post, is the passing this week of two of those people I refer to above. Both Charlotte Kitley and Ismena Clout were well respected blogging campaigners in the online community, and I had the great pleasure of meeting them personally. They both wrote very personal blogs about their own situations and were writing right up till the end.
As a cancer writer I fully understand the mutual benefit of what we do. I have personally found a great deal of therapy from writing about my experiences and emotions, and sharing experiences with others. I would also like to think that others have learned a lot from my work. So hearing from people writing about their thoughts and emotions as they enter the last days of their lives is a particularly powerful thing, but I can’t begin to imagine what must be going through your head as you are writing what you know to be your final words.
Although it has only been seven years since the start of my illness, I can now no longer remember what life was like before online communities existed. Where we could rarely share our fears and exhilarations with anyone who could really understand what we were facing. It is now so easy to jump on your phone or computer and contact someone who really does understand. Sure there is no real structure to it, unlike a very formal support group process, but I have found it to be incredibly effective.
Patients themselves have organised things in most cases, they understand what is required and have formed many communities to offer support to each other. Almost every tumour type has a group, with members from around the world. That is the beauty of the internet, as there are no physical boundaries. The thing I have found to be the most powerful though is the incredible bond that forms between members. Most of us have never met face to face, but there is so much mutual respect for what we are all doing. We share each others pain and triumphs equally. Losing these two wonderful ladies this week feels personal. For some reason I forgot they were vulnerable and fragile, as their writing exuded strength which they passed to me, through their incredibly inspiring pieces. They made me forget about my own issues and to try and somehow support them.
I feel very privileged to be a part of this community, we all give something but we all receive something too. This week has reminded me yet again that we are only human, doing the best we can to help others, but also requiring help ourselves at times. I know that both Charlotte and Ismena will have inspired many people to share their experiences too, which is a positive thing. “And So There Must Come An End” is the final blog from Charlotte, it is an incredibly moving piece and has been shared a lot on social media this week, so if you haven’t already seen it, please take time to read it now, as there are many lessons for us all there.
It would be great to hear your experience of online communities that you may have experienced, and can you remember what support was like before?