The Upside Of Having Cancer – Tribute To My Cancer Support Group

Today, I said goodbye to my cancer support group.

I started the group last year, after finding out our city of 70,000 people didn’t have one. Me and Vanessa, my oncology nurse, now working for the Cancer Council, always knew we’d make a great team, and the support group was the thing we’d been waiting for to do together. We kicked it off with an ad in the paper and a couple of posters around the place. We had twelve the first meeting, which is a great turnout for a first meeting of a brand new group. Since then, the membership has fluctuated between twelve and fifteen. Today was a big one – sixteen I think. I had to break the news to them that I’m moving away, and this was my last meeting with them. I had to stop myself from talking, because I could feel myself just prattling on and on, telling them how amazing they are and how privileged I have been being amongst them. They let me talk. They always let me talk. I am thinking now that they probably let me talk because thats how we do things in our group…we let people talk.

In fact, leading this group has just been basically about managing the talking. Sometimes you do things to get them started, sometimes you do things to make them stop. I haven’t really done anything else but this, and I can tell you, it’s worked so well. This has been one highly functional support group – in fact, I’d go so far as to say they are a little community, in the truest sense of the word.

I think I know how it happened. It started because I didn’t know what I was actually going to do with the group in the meetings. Should I have guest speakers? Special topics? Should I do presentations? Gawd, I dunno, I thought to myself. Then I decided to stop trying to work it out with my brain, and thought with my heart instead. Why would they come to a support group? For information? Or for conversation? To be facilitated? Or to be heard? I decided not to make speeches or disseminate information; I decided to make the meetings about stories. Their stories.

So, this is what I decided we would do in the meetings. We arrive at ten. I have coffee and tea facilities set up, and everyone helps themselves to a cuppa as they come in. They mingle, mix and introduce themselves. At 10.30 we sit down in a circle. I read out our group agreement which basically says we don’t judge others, we let others speak and we don’t give advice unless it’s asked for. I read our group mission statement which says that we welcome people regardless of which cancer they have, and carers, family members or friends are welcome too. Then I go around the circle and invite people to talk for a few minutes about themselves. Whether we have fifteen or five people, and whether they are the one with cancer or not, they have a turn to speak. They can pass, but that’s only happened once or twice.

My initial idea was that this part of the meeting would prelude the focus – the speaker or special topic – but that never really happened. Each time we met, it became clearer to me that we needed this part of the meeting the most. Some told their story over from the beginning each time, some just updated what had happened since last month. Some reported test results, some told us they were all clear, again. We’ve talked about treatments and normalcy and the weird things people do when faced with cancer. In the end I ditched the idea of a special topic. It became clear what we were coming to do was to talk, to listen and to be affirmed. We became, through the constant retelling of our stories, with little additions and subtractions each time, listeners, storytellers, supporters, supported. I watched one person who’d come in initially impatient and blustering change over time to a patient, intent listener, offering helpful suggestions and genuine empathy and understanding. I saw the reticent become open. I saw the edge-dweller become immersed. A group of more different people you could not find – and yet these people have grown to love and regard each other so deeply over just a few months, it’s like a miracle. And I got to be there with them while it happened. And I will never forget it as long as I live.

I went to some training for support group leaders early in the piece, a workshop held in Sydney at the Cancer Council head offices. There were a lot of people there, mostly health professionals who were required to facilitate support groups as part of their jobs, and I think only one other cancer survivor like me. I’m ashamed to say I lost patience about two hours in. I observed this room full of people with various degrees they’d been to university to obtain, costing them countless hours and tens of thousands of dollars, all so they could be paid to help people through the dreadful physical, social and psychological things they had endured because of cancer, all literally cowering wide-eyed in fear at the prospect of sitting in a room full of cancer patients. We did this exercise in self-assessment, where we were asked to position ourselves along an invisible line across the room in relation to our own view of how capable we felt to facilitate a cancer support group. When we’d finished arranging ourselves, I was disgusted to observe that most of us, well-trained and experienced health professionals, cringing at the lower end of the invisible scale. I, feeling utterly disgusted at their wanton cowardice, positioned myself almost out the door at the other end. I wanted to rush down there and give them a slap upside their above average I.Q.’s. You’d have thought we were being trained to wrangle polar bears. I should point out, there was someone else up toward my end – the other cancer survivor.

I think the difference between me and the not-very-confident social workers, apart from my supreme arrogance, is the fact that I’ve been there – through cancer that is. I still don’t know what they were so worried about, why the prospect of managing the conversations of a few sick people in a room frightened them all so much. I guess it just annoyed me that their own feelings of inadequacy seemed to completely over rule their capacity, even though that capacity had been hard earned and learned. But that’s the difference isn’t it, between reading about polar bear wrangling in a book, and having a polar bear happen to you and having dealt with it personally. Scars. Bad memories. And skills. Skills you can’t get a degree in.

At training, we did these breakout groups where we did role-plays on possible worst-case scenarios in a support group. I deliberately got myself cast as a middle aged (read menopausal) female (read emotional) with bowel cancer (awkward) whose friend just died of the same thing (read grief-stricken) and whose husband won’t come to the group (read isolated and depressed) who is being talked into (read gullible) refusing chemotherapy (read trouble-maker for doctors) and trying alternative therapy (read nutcase).  I really can be such a bitch sometimes. They were all so frightened; frightened they would have to deal with men and women in the same group. Concerned about dealing with rare cancers. Worried about dealing with different cancer groups. Intimidated by the prospect of conversations about complimentary therapies. Scared of people who were at different stages of their cancer journey. Freaking out about what to do if someone got angry in the group. Terrified that someone might die.

When I got home to my group, it was only our second meeting together. I realised not only did we have men and women in our group, but we had a plethora of cancer types. We also had a man with breast cancer (very rare) and three women with lung cancer, all non-smokers (also rare). We had newly diagnosed and people years down the track. We had a couple doing Gersan therapy, and a naturopath amongst us. My breast cancer man was mad as hell. And by the time we had reached our third meeting, two members had passed away.

We had a busy first couple of months.

But, against all odds and despite an worries I may have had, it’s all worked, mainly I think because we have never really been concerned with our diversity, but more with our commonality. We haven’t been contrasted or conflicted by our differences, we’ve been connected by our similarity. We came to the group thinking what united us was a mutual enemy, but we have come to appreciate that in fact we are more united in our likenesses. Cancer may be what we all have in common, but slowly, it’s been pushed aside. As we tell our stories and listen to and honour each other, as we learn respect the stories of others and esteem our own, we have grown and enlarged to the point we barely leave any room for cancer to be with us anymore. It skulks off into a corner and prattles to itself while we all celebrate our wondrousness and aliveness. Cancer support group my blinking earhole. We’re a virtual street parade, complete with heroes, and just about as much cleaning up to do afterwards.

So today, I had to say goodbye, and I know that it may be farewell too. There is frailty – emotional and physical. But there is also strength, acceptance and grace aplenty. I have seen God working in this group even though many who are in it don’t believe, but that’s okay. The rest of us who do have faith enough. We’re good like that. What one lacks, often another has in abundance. We bring what we have and share it with all.

I have confidence that this little community will sustain without me, because I was never what was holding it together anyway. In fact, I feel this group of people was ordained long before me, or even before they. It’s been like breathing, being with them, and I won’t stop being with them even though I’m moving away. I’m part of something incredible that happened in this world, and for all the crappy things I’ve done, I thank God now I have redeemed myself a little perhaps. If all I have to show for myself at my end of days is this amazing and beautiful, growing and living thing I’ve been a part, then I’ll feel I’ve done something very remarkable.

To my wonderful friends – the Coffs Harbour General Cancer Support Group – thank you all so, so much. I love you, and feel I have been loved too, and I will never forget you. I will see you all again. You have made me bigger, and I can never go back to being small again. Selah.