Everything changes and the guilt of living

Today I received a beautiful message from Caroline, one of the ladies on the YBCN (Younger Breast Cancer Network) Facebook group. Last year Rosie had organised a YBCN get together in London. It’s where Caroline and she met. I remember the day. Going off to meet the group of women all carrying the same internal scars and scares. I never properly understood the fear that breast cancer instills in a woman living with it. My appreciation of this disease has grown since Rosie’s death. But how can a person who has never had cancer ever really understand the impact it has on the sufferer?

Through her blog, Rosie found great comfort in being able to express her innermost thoughts. And being a vibrant part of a number of online cancer communities she also found a way to deal with this most appalling of diseases. But I think it was through the YBCN event in London that she found real comfort from the certainty of understanding of her fellow victims.

Caroline talked about two aspects of this disease. For those who successfully live through and beyond their cancer treatment they suffer the pain of “survivor’s guilt”. Until I’d experienced Rosie’s cancer to its bitter end this really wasn’t something which had occurred to me. I’d heard this phrase used with respect to survivors of the Nazi death camps during the Holocaust. Most famously the great Italian chemist, Primo Levi, who wrote movingly about his experiences. But survivor’s guilt and cancer? Caroline wrote about this. Even though Rosie’s treatment had failed last year she still maintained her connection with those who were living healthily after theirs. Rosie was happy for those who, unlike her, had escaped the secondary diagnosis. Somehow her humanity allowed her to continue to support those whose luck hadn’t run out. But then that was Rosie.

Survivor’s guilt can, I imagine, become an appalling, all-consuming beast. But that can’t be allowed. For those who survive, they must take the gift of life and do something special with it, whatever that is. Rosie would have been furious if her death meant others couldn’t make the most of their lives.

Caroline also talked about change. Her experience of cancer has changed her for good. Her words, “I’m not the person I was before this all started” are something I can identify with. As I sat alone in synagogue this morning I thought about my place in this world – and my children. It occurred to me that for the last year our lives have been odd, different, changed. Rosie and I had tried so very hard since June 2014 to keep things “normal” in the Choueka household. Despite the inner turmoil created by this disease Rosie and I both knew that we couldn’t bring this into the children’s lives. Of course we needed them to understand something of what was going on but it was not right or fair to expose them to the awfulness of the situation, or at least not until almost the very end.

The most obvious change, with the benefit of hindsight, was the creeping sadness. Rosie and I experienced a happiness together that I only dreamed of in my earlier years. And with the arrival of the children that simply multiplied. Yes there were bouts of illness, health scares and the like but nothing we couldn’t deal with; that’s life. Cancer was the game changer. Looking back on it I’d say it felt like a storm rolling in from afar. The winds rising up, the sky darkening and the rain, thunder and lightning tearing across the horizon at breakneck speed towards an unsuspecting town. That’s the way it’s felt.

Now the storm is calming. It’s still raining. It’s still dark. But far out on the horizon I can see daylight. The sadness is most firmly still with me, with Natalie and with Joey. I know at some point the storm will pass, the skies will brighten. But what will it leave behind? I don’t know. Most certainly everything has changed forever but it’s far too early to see exactly how. In that awful journalistic cliché, only time will tell.