Spending precious time with my husband
Jude, 44, has been supporting her husband since he was diagnosed with non-Hodgkin lymphoma four years ago.
Nige had probably been unwell for a good year. He kept getting cuts that just wouldn’t heal and had a cold that never went away. Then he became so pale – the colour was unreal. That’s what led him to go to the doctors for tests.
That same evening, he was rushed to hospital. It was clear that something was seriously wrong. When we met the consultant, he kept saying “lymphoma”. I had to stop him and ask, “Can I just clarify – are you telling Nige he has cancer?”
Breaking it to our young son
He was diagnosed on 27 November and they told us later that they didn’t think he’d make Christmas. We had no choice but to tell our young son. He was only seven at the time and his world changed overnight.
For the first few weeks they thought the cancer was too advanced to treat, but then they looked at his age and our young son, and decided to throw everything at it. Nige had 20 chemo sessions, but it was clear they didn’t anticipate remission – it was about extending his life. That was four years ago. Our son went to high school this year, which was a really big thing for him. He said, “I can’t believe my dad’s here to see it.” It’s wonderful, but he worries about leaving high school and Nige not being here.
Adjusting to less money coming in
There’s a huge financial hit with cancer. Nige was off work for 16 months, and when he returned he could no longer do the job he loved and he had to become part time. In a heartbeat, his income halved.
He was claiming Personal Independence Payments for a while, but when it was reviewed – even though there was no change in his medical condition – it was taken away. We chose not to fight it because it was too much at the time.
Thankfully Nige doesn’t equate working with being ‘masculine’ or see himself as having to be ‘the breadwinner’. In our house, it’s all about partnership. And we manage. You cut your cloth…
Staying in control
Nige’s cancer affects him day in, day out, which obviously affects us a family. I’m aware of how exhausted he is, and don’t see the point in him expending energy doing things that I can do. I’d rather he saved that energy for our son. But I make sure I remember he needs a sense of purpose and to feel in control at times, so I try to find a balance.
Both our families are in Ireland, so we don’t have the option to delegate. As much as they’d love to make packed lunches or cook dinner, they can’t.
We’re very much part of our community – we have friends who would do anything for us. But because Nige is immunocompromised and we worry about germs, it’s easier just to get on with things ourselves. I don’t feel as safe when other people are around. So really we’d battened down the hatches even before we had to shield because of coronavirus.
One thing I would say to others in this position is accept help from the start. It’s hard to let people in once you’re used to doing everything yourself.
Hitting rock bottom
I hit a terrible low last year. My own health crumbled – mentally and physically. On top of everything else I was trying to raise awareness of blood cancer, fundraise and train to run the London Marathon for Blood Cancer UK. I wanted to make it count.
I’ve got two best friends, who have been phenomenal. But they were both diagnosed with cancer themselves. I felt like a nasty person if I went on about how I was feeling, so I had no one to talk to at that point. My support blanket was lifted away. I couldn’t do it any more and needed crisis help.
I started going to the Maggie’s Centre at our local hospital. I often didn’t even talk to anybody when I was there – I just took time out. And there’s a fantastic local charity called The Haven, where I can contact a nurse if I need to talk to someone. When we chat, it’s not about how Nige is doing – it’s about how I feel. I get to say, “It’s not fair and I don’t like it.” They’ve also supported our son – helping him to come up with his own strategies to deal with what’s happening. These charities and others have found new ways to support people during the coronavirus pandemic, so I can still get help if I need it.
Spending time with Nige
Before lock-down, I was still going to the gym, but always made sure I finished work on time and went straight there. That way, it didn’t take up the whole evening and affect our family time. We’re told me-time isn’t selfish, but it does feel like it if the time with the person you love isn’t as long as you thought it would be. If I won’t have him till the end of our natural lives, why would I do anything without him?
Janssen-Cilag Ltd has supported Blood Cancer UK with funding for the production of this web page and others within the ‘Living well’ section. It had no influence over the content.