October is Breast Cancer Awareness month and we’ve been talking to women who have had a breast cancer diagnosis about their experiences. Hayley Ryan takes us through the 12 months which have passed since hers.
Hayley Ryan was 35 when she was diagnosed with triple negative breast cancer in 2015. The past year has been a blur of treatments and trying, with her husband Jason, to make life as normal as possible for her two children, 11-year-old Joseph and five-year-old Lois.
I was the least likely person to get cancer by anybody’s standards. I don’t smoke, I don’t drink, I always eat very healthily and exercise.
Essentially I was misdiagnosed for six months. I was told I didn’t have cancer. Unfortunately I did have cancer.
I found a lump in April 2015 and went to the doctors. They were very quick at getting me into hospital for an ultrasound and a biopsy. The biopsy came back as inconclusive, but they said it wasn’t cancer.
They almost discharged me, but I said I’d rather stay in the system. At the follow-up, the lump had got bigger and I would get a dragging pain in it. It also used to buzz a lot, which was weird.
I asked for it to be taken out because it was annoying me. They agreed and booked me in for surgery six weeks later, at the end of November.
A few days later I got a call asking me to come in and see the consultant, who told me that actually, I had grade three, triple negative breast cancer.
People think breast cancer is just breast cancer: I know I did, but there are different types. There’s breast cancer which is affected by hormones – and can be treated with them – and that’s normally the cancer which affects older women, going through the menopause.
The other type is called triple negative, which is not receptive to or caused by hormones in any way. It’s more aggressive and is more deadly. And it affects more young women. It’s the worst one to have because the hormone treatments aren’t an option.
• 1 in 8 women in the UK will develop breast cancer in their lifetime.
• Breast cancer is the most common cancer in women in the UK.
• Nearly 12,000 people die from breast cancer in the UK every year.
• More than eight out of 10 people survive breast cancer beyond five years.
• Breast cancer also affects men, but it’s rare – around 340 men are diagnosed each year.
• Around 5,600 women under 45 are diagnosed with breast cancer in the UK each year.
For more information and support, visit www.breastcancercare.org.uk
They found out it had spread to my lymph nodes under my arm and I started chemotherapy the week before Christmas. I had no idea. People think it’s about feeling sick and losing your hair. But it’s unbelievable how the chemicals affect your brain. It was horrendous. I lost myself as well as my hair.
There’s no doubt losing your hair is traumatic, and it was very hard on my children to see that. You look so poorly and I hate being ill. I haven’t got time to be ill.
I would have chemotherapy on a Friday, and the following Wednesday would always be the worst day. I would just spend the whole day crying. I couldn’t remember who I was. I didn’t know who Hayley was now. You’re so removed from your life.
I had chemotherapy up until April, and then I had another operation to remove all the other tissue from around where the lump had been. Unfortunately the tests came back to say that all of that tissue was cancer, so the chemotherapy hadn’t worked and I would have to have a mastectomy and more lymph nodes removed.
Over the summer holidays I had radiotherapy – 15 sessions over a month which was a real pain in the arse. I found the treatment to be really traumatic. You’re on your own in a room with all this machinery going on around you and you’re in pain.
Because it’s triple negative, they can’t really do anything else now. In terms of being in remission, I guess I am, but there is such a high risk of recurrence that I don’t think of it like that.
The only trial I was eligible for was the ‘Add Aspirin’ trial which is looking at the effects of aspirin on delaying the return of cancer. So at the moment, I am taking an aspirin every day and doing my best to eat very well and live as healthy a life as I can.
I’m not the same Hayley that I was this time last year, although I have got back to living the life I lived before. I’m back at work as Teaching Innovation Manager at a further education college. I’m a school governor, I write for the Times education magazine. But it’s hard to put into words what it feels like to no longer have a future and to not be able to think about the future – especially when it comes to the children.
The other day, my daughter said, “So when I’m 11, Joe will be 17.” I just can’t bring myself to think about them at those ages because I really don’t know if I’m going to be there.
Because of my misdiagnosis, I am at a very high risk of it recurring. One consultant has basically told me that that’s it. There have been reports written about me, which say it’s inevitable. I have spoken to consultants who are a bit more positive and have a better bedside manner, but ultimately I do feel like this is what’s going to kill me.
“I feel like life is an absolute gift at the minute and I’m just trying to get back to being the me I always was. But it’s terrifying to be told that you just have to wait and see whether it’s going to pop up somewhere else.”
Once you don’t have a future, it sounds really cliched but you do just live for the day and you really value where you are and what you’re doing. We’re planning to go to Euro Disney for October half term, so at the moment EVERYTHING is about that… and the renewal of our wedding vows next year.
I was 15 when I met my husband. We were engaged when I was 19 and married when I was 23. We do feel very lucky to have found each other.
He’s amazing. He is the strongest man. He’s been to every single appointment, every single treatment. He never breaks because he just sees it as his job to look after me and the children. He’s a calm, quiet soul. I’ve had some counselling but he is absolutely adamant that he doesn’t want to talk to anybody, that it won’t help. He somehow manages to remain strong.
We’re very playful. Of course we do have moments when we both cry, but we’re not walking around like that. We have a lot of laughs and live a normal life.
I feel like life is an absolute gift at the minute and I’m just trying to get back to being the me I always was, which I find quite comforting. But it’s terrifying to be told that you just have to wait and see whether it’s going to pop up somewhere else. As a bit of a control freak, that’s very hard for me to deal with.
We’re renewing our vows on 1 April next year. That was the date of my last chemo and it’s also the anniversary of when we got engaged in Paris.
I felt like I was in this bubble of love when I was diagnosed. And felt so lucky. Somebody who might be diagnosed might feel like they’ve led a bad life, or made bad decisions, or have big regrets or rifts. I had none of that. I’ve had a really fantastic life with great friends and a wonderful family.
I wanted to show Jason how much I loved him, so I thought, “I’m going to marry you again.” The children are so excited. We just want to have a really lovely day full of love, which we can all enjoy and remember.
When I was first diagnosed, I felt really strongly that I didn’t want to meet anyone else with cancer because I didn’t want to know if they were going to live, and I was going to die, for example.
But when I went for my first chemotherapy, the lady next to me, called Sally, asked if it was OK if she talked to me while we were having our treatment. She is one of my closest friends now.
We went on a Look Good, Feel Better course and met another girl who was 28, and we’ve just become the firmest friends. We have a Facebook messenger group called the Triple Negative gang, because we all have it.
I talk to them every day, just as a way of normalising your experience, I can’t recommend it enough. We have such a laugh. We have the silliest, filthiest sense of humour.
I can’t talk to my other friends about the fact that I’m absolutely certain that I’m going to die. They don’t want to hear that. But with them, it’s just our lives and we can talk about it freely.