Imagine losing your partner when they were just 47. Imagine losing your dad before you could go for a pint with him, or before he could walk you down the aisle, knowing he will never see your children. Then imagine feeling unable to talk about it. Imagine feeling too fearful of judgement.
This was life for Lisa and her two children, Charlotte and Tom, after Stephen died from lung cancer.
“I can remember exactly the moment I decided to stop telling people Stephen died of lung cancer. I can remember it like it was yesterday.
I went to the bank to change our account. It was a joint account and we weren’t ‘joint’ anymore. It’s amazing how something so practical can be so hard to do. It was further proof that I was on my own now. I wasn’t part of a team anymore. It was just me.
The woman at the bank was going through the details on Stephen’s death certificate. She then looked up at me and said those three loaded words I’d heard before – ‘Did he smoke then?’ It’s not just the words, it’s the tone that question is asked with. It’s the look that goes with it, that belittling look that screams – well what did you expect?
I did what I always did; I tried to justify the situation. I explained he had been, starting when he was still at school, like many people did, but that he had given up. But that look didn’t fade. The judgement didn’t pass. All I got by way of a reply was hmm.
Many people affected by lung cancer face the stigma of the disease
It was in that moment when I decided I was not going to put myself in that situation again. From that moment on, Stephen died of cancer and I prayed that people wouldn’t go on to ask what kind. I was not going to let people who had no idea whatever what kind of person Stephen was judge him. I was not going to let his death dictate what people think of him.
Because Stephen was so full of life. He loved people and people loved him. Everyone who knew him has a Stephen story. I have countless. One of my favourites is our first Christmas together as a couple. I remember saying how lovely it would be to have a real Christmas tree. Problem was, there were none for sale near where we lived and I didn’t think it would fit in my car, a mini and Stephen just had push bike! One evening, I heard him ringing his bell. I looked out the window and there he was with a 5ft tree tied to his back. He’d ridden six-miles home like that with everyone taking the mickey out of him. But he didn’t care. He knew it would make me happy and that’s all he wanted to do.
A few years later, I was given the opportunity to travel overseas with work. There was no question of him putting up obstacles; he just did everything he could to support me. We were a team and we overcame everything together. But when it came to the hardest challenge I’ve ever faced, he wasn’t able to help.
He’d had a dry cough for a while and had gone for a scan but was told they couldn’t see anything. They thought it might be adult asthma. He was due to have a follow up scan but, before he’d even made it to that appointment, he’d already been diagnosed with terminal lung cancer.
He gone to work, saying he didn’t feel too good. Tom, our then 15-year-old son, was trying to have a conversation with him but Stephen didn’t seem to understand what Tom was saying. He sat smiling distant and confused.
I thought he had had a stroke. I called an ambulance and he was taken to A&E. That’s when we found out there were tumours in his brain but the consultant didn’t think they were primary. We eventually found out it was lung cancer in the most insensitive of ways; a nervous, young doctor just blurted it out – well, of course, you know it’s lung cancer – in front of me, the kids and my mum.
The next four months were a blur. That’s how long we got together after he was diagnosed. Four months. Stephen never talked about it. He refused to engage with any palliative nurses; they wanted to discuss his death, which, to him, was never going to happen. He didn’t have time to come to terms with it and so never had the opportunity to say goodbye to me, our children or his family, the loving messages for the future I know he would have said. None of us had time, it was so fast, too fast.
It been a long process and, to be honest, I’ve still not come to terms with it but I’m not ashamed or fear people’s reaction anymore.
Now I’m angry. I’m angry and indignant about that kind of attitude. Why is it only lung cancer that prompts such disapproving, unsympathetic reactions? What gives anyone the right to cast that kind of judgement on a man they never met? How can they define him by one tiny piece of information? Stephen was everything to me, everything to our children, loved by so many people.
That’s why I’m so pleased I’ve found Roy Castle Lung Cancer Foundation; they’ve given me the confidence to talk more openly about lung cancer. And now here I am, putting myself out there, sharing my story, posting about my fundraising efforts on Facebook. If you don’t like it, tough, move on and don’t bother to pass comment. Stephen is defined by how he lived, not how he died. If you’d like to know more about lung cancer, if you’d like to know about the people it affects, then talk to me. Talk to Roy Castle Lung Cancer Foundation.
“I’m ashamed to say I knew absolutely nothing about lung cancer before Stephen’s diagnosis. Why would I need to know? Don’t make the same mistake. Don’t think you’re immune. And, above all, don’t make a snap judgement if someone shares their story.”