Page 24 - Inspire Autumn/Winter Edition 2017

Carers

“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 it panicked him but I was terrified that if I took him
back to hospital he’d never come back out again.

“Initially, when Joel was still Joel, when he still had his hair,
when his pain was still manageable, I would have a bit of
time to myself. 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 “ You think something
plans. I remember like this is never going
we were watching to happen to you then,
a film. It was set in when it does, you think
America and I said
we’ll have to go there it’ll happen all the time.
but Joel got upset and But you can’t let that
asked me to turn it off.
He’d Be Mortified If People Were He knew we wouldn’t go. fear stop you. ”

Doing Anything But Living. We both did.

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

24 Inspire 2017