Blog by Helen Sanderson

Joanne was a work colleague of mine. We shared an office for a year whilst she was on a short-term contract developing a new website. We had a mutual friend, Fiona. Joanne would describe herself as a huge foodie – she had worked as a chef and loved great food. A big fan of hockey she would see the occasional match at home with her brother.

After her contract ended she left to take up an admin job with a building firm.

We were shocked to hear, through Fiona, six months later, that Joanne had cervical cancer.

Everyone wanted to support and help Joanne, and from conversations with Fiona, it was difficult to work out how. The story is a familiar one, as Emily McDowell explains,

“Unless you have gone through a serious illness yourself, it is hard to know what really goes on when you’re sick. People do their best to be supportive and, to be honest, you can’t expect them to understand something that you are struggling to understand yourself.”

Emily McDowell had stage 3 Hodgkin’s lymphoma diagnosis and nine months of treatment at age 24, and she realised that ‘the most difficult part of a serious illness is rarely what you would expect.”

In her blog she says,

“It was the loneliness and isolation I felt when members of my close friends and family members disappeared because they did not know what to say, or said the absolute wrong thing without realising it.”

The emotional impact stayed with her, and “she knew people needed a better, more authentic was to communicate about sickness and suffering. She created ‘Empathy Cards’ to say that things she wanted to hear when she was going through her sickness.http://info.emilymcdowell.com/news/

She says’ “It is a really tough problem, someone we love needs our support more than ever, but we don’t have the right language for it.

She is right – we don’t have the language, and we don’t have the conversations that we need to have. Expressing empathy, with these fabulous cards is a great start. How can we go beyond that to have conversations about what good support looks like to you?

In supporting Joanne, her friends didn’t know whether she wanted to talk about cancer every time they were together – was it rude and insensitive not to?

Whether not to talk about cancer at all unless she brought it up?

Everyone said, ‘please let me know if I can do anything to help” but Joanne never asked them to do anything – so that that mean she didn’t want or need any help, or just that she did not know how to ask?

I think this is where a Community Circle could really help. If Joanne has known about and wanted a Community Circle, there could have been a safe place to have these conversations. We could have found a facilitator for her, and together, Joanne and the facilitator could have thought about who Joanne wanted to invite to her Circle. Every Community Circle has a clear purpose, and perhaps Joanne’s would have simply have been to support her through her cancer experience. At the first meeting there could have been a conversation about what is working and not working now for Joanne, and her friends could also say what was working and not working from their perspective. I imagine that this is where they might have said that they did not really know how to support Joanne. Perhaps that could have led to a conversation where Joanne was supported to say what she needed, what good support looked like for her. The facilitator would have then gently moved it to actions.  Perhaps Joanne would have said,

• Please only talk about my cancer if I bring it up first
• Don’t stop texting me – about everyday life – the stuff we would have texted about before my diagnosis. It feels good to be in touch that way.
• Never send me flowers – I appreciate the sentiment but it just makes me feel like people see me as very sick
• I’d love you to join me when I am walking Chappie my dog – anytime at the weekend, just text me if you are free
• It really helps to have someone with me for Chemo sessions

Perhaps one of the actions would be a rota for Chemo appointments.

It is hard to have these conversations – for the person, and for friends and family. Community Circles can be a safe place to do this, to help us all have the conversations, even when we struggle with the language, and worry about getting it right.

So I would like to suggest another card to Emily McDowell’s excellent collection,

“I would love to be part of your Community Circle – please just ask.”