Lung cancer doesn’t just affect the patient. It affects everyone who loves that person too. Watching the person you care about the most suffer at the hands of this awful disease is often just as hard. You feel powerless and guilty. You spend every moment you can with them, doing anything to make things that little bit easier. It’s something Alexandra Brick knows all too well when her partner, Joel, was diagnosed with small cell lung cancer at just 28:
“The doctors couldn’t believe Joel had lung cancer. He was told it was chest infections, asthma, even TB. He was coughing up blood, coughing so much he was sick, but lung cancer just didn’t seem like a possibility. But that was Joel; everything about him was unique!
“By the time he was diagnosed, it was stage IV and it had spread to his heart, lymph nodes, liver, spine and pelvis. We knew very early that they were never going to cure him but I had to stay positive, that was my role, to give him the normality he so desperately craved. The day after he got home from hospital, he told me to go to work. I did but I just couldn’t stop crying. Fortunately, I had a wonderful boss who understood where I needed to be. She sent me home and that’s where I stayed.
“I didn’t want to be Joel’s carer; I wanted to be his partner but the reality is you become both. I became so protective of him. I wouldn’t let anyone touch him. I wouldn’t let the nurses bathe him. I knew he would be embarrassed so I did what I could to maintain his dignity.
“I kept a diary of all the medication he needed, took his temperature frequently. If it was high, I’d panic. I tried not to because I knew it panicked him but I was terrified that if I took back to hospital he’d never come back out again.
“People always ask if there’s anything they can do. They ask ‘Are you looking after yourself?’ Initially, when Joel was still Joel, when he still had his hair, when his pain was still manageable, I would allow myself a bit of time. I’d come home and get changed. I’d pop to the shops, even get my nails done. I’d give him time with his family. But as Joel’s condition worsened, I stopped. It wasn’t about me. He was my sole focus and every second counted.
“We tried to make plans. I remember we were watching a film. It was set in America and I said we’ll have to go there but Joel got upset and asked me to turn it off. He knew we wouldn’t go. We both did.
“It was Joel’s decision to go into a hospice. He knew he was going to die. He was in a lot of pain. I think that was one of the worst parts. If he went peacefully maybe it would have been easier. Instead, I was angry; angry he was dying, angry that the only explanation people could give me was ‘bad luck’, and so angry at the amount of pain he was in. Nothing worked. The initial treatments to his pain relief. He was unique, even when it came to his meds.
“The only thing I can take solace in is that he knew how much I loved him. Just before he died, I said I love you and he said I love you too. If he had been sedated, we might not have had that.Joel was diagnosed with lung cancer aged just 28
“Joel died in January. I’m still left with so many unanswered questions and fear; you think something like this is never going to happen to you then, when it does, you think it’ll happen all the time. But you can’t let that fear stop you. Joel would go mad if I didn’t get up, put my make up on and go to work. He would be mortified if people are doing anything but living.
“It’s a cliché but every day is different and everyone’s situation is different. Some people take comfort in talking to others who have gone through it. I tried to do that; I went on to Roy Castle Lung Cancer Foundation’s forum but I found it hard to see other going through what Joel and I went through.
“I don’t know about anyone else but I get worried about what other people are thinking. Are they expecting me to ‘get over it already’? Are they fed up with me getting upset? Maybe, but Joel only died in January. That’s nothing in the grand scheme of things. It’ll take as long as it takes and I’m taking it day by day.”