Karen's story – living with incurable cancer

Wednesday 17 April

We'd like to share Karen's story with you. Karen and her family came to us for support when she was diagnosed with cancer. Our support helped Karen to speak to her family about her cancer and to face her fears for the future.

Please consider making a donation this spring so that we can be here for families like Karen's when they need us most.

 

"Last week, I was told that my cancer has come back for a fourth time and is now metastatic, which means it’s spread and is unlikely ever to be cured.

I’m so much luckier than many people. I have my amazing son, Tristan, who’s 12, and my partner, Alistair, who’s so supportive. I have my parents, who live nearby and are always there to help. But family life with cancer is hard. People often say that they don’t know how I’m dealing with this, but knowing Maggie’s is always there to support me and my family, to listen to how we’re feeling and answer whatever questions we have, means we’re able to cope day to day.

At the moment the cancer is confined to my chest area, but it’s been in my collar bone and lymph nodes, and every time I get a headache, I wonder if it’s spreading further. I sometimes think of my cancer like Space Invaders, or the baddies in Pac Man, and chemo is like taking my son’s Nerf Gun and blasting them. Sometimes it feels like I’ve been invaded by these things and I just want them out of me. You wonder where it’s going to go next, and every ordinary ache and pain can make you think it’s spread somewhere else.

I was first diagnosed almost exactly three years ago. It was a beautiful sunny day and I’d gone to the hospital to have them check out a lump I’d found in my left breast. I remember the doctor giving me the news: “I’m sorry,” she said, “but we think you have cancer.” It felt so wrong, being told that on such a lovely sunny day.

Tristan was too young at the time to really understand what mummy having cancer meant, but of course kids know that something’s up. We tried to keep life as normal as possible for him.

It was soon after I started treatment that I went to Maggie’s for the first time. One of the chemo nurses had told me about some of the ways they’d be able to support me, from talking to a psychologist about my fears for the future, to practical things like help with money worries.

One of the hardest things is the feeling that, as a family, you’re going through all of this on your own and you’re constantly having to learn how to deal with things you’ve had no preparation to deal with. The team at Maggie’s have so much experience that they’ve always seen someone in your situation before, and they always know what to say and what you can do to make things better. 

When I started chemo for the first time, I was really dreading losing my long, blonde hair, which felt like part of my identity. One day, I went to wash it and found it was matted like the fur of a wet dog. I couldn’t even get a comb through it and had to get Alistair to cut it off. When I looked in the mirror, it wasn't me looking back.

When I was diagnosed with cancer a second time, I thought, “Well, I’ve done this once, I can do it again.” But when I got my third diagnosis and was told that my cancer had spread, it was really hard to take. That was the moment when we knew things weren’t going to go back to normal. As a family, there was so much we’d been looking forward to – the holidays we’d go on and watching Tristan grow up. All of that suddenly seemed uncertain.

But we picked ourselves up and went down to Maggie’s. One of the team took us into a lovely little room, with sun streaming through the windows, away from everyone else and listened – really listened – to how we were feeling. He told us that if we were having this conversation eight years ago, things would have looked a lot worse, but that things have moved on; there are so many new drugs out there now, and some people are able to go on living for years with my kind of cancer.

I just don’t know where else I’d have been able to sit down for as long as I needed with someone who knew so much and was able to answer my questions. Even my mum and dad have been along to Maggie’s and that really helped them to come to terms with what’s happening to me.

Without Maggie’s it would be so much harder for me to talk to my family and to carry on being a mum to Tristan. The fact that I can go to Maggie’s and talk through what’s happening to me means that at home I can be a normal mum for Tristan. For a 12-year-old, that normality – being able to see your friends, go and play football after school and that there’ll be dinner ready when you get home – is so important, and Maggie’s helps me to do that."

 

Make a gift to Maggie's this spring

"I’m so grateful that I’ve always had Maggie’s there to support me, and I know that’s only possible thanks to the generosity of supporters. I want to make sure Maggie’s is always there for the families they see every day, just like mine.

Anything you can afford to give, however large or small, will make sure that when another family is facing the anguish and uncertainty of incurable cancer, they get the vital support we’ve had."