Sue, 57, lives with her husband in Cumbria. After her treatment ended, she found there was little support in her area, and used blogs about others’ experiences in the BECCA app to help her family understand how she felt.
I never expected to have breast cancer
I was diagnosed last June, 2016, the same week I was due to cycle from London to Brighton. I’d had a recall after a routine screening, and was concerned, but put it out of my head and focused on training. None of my family have had cancer, so I thought it would all be fine.
It turned out I had invasive ductal breast cancer (IDC), as well as cancer cells in my lymph nodes. It had been caught early thanks to the screening. Now I wonder, what if I hadn’t gone?
I cycled London–Brighton days after being diagnosed
I was cycling in memory of my dad who had died not long before, raising money for the British Heart Foundation who had supported him. He had done it himself twice, the second time in his 70s.
I was determined to do it, even more so after I was diagnosed. There was no way I could give up – I didn’t want to let my dad down.
After the cycle I had to go back to thinking about my treatment. It was hard, I had to push to get any information, and to understand the process of chemotherapy. I was given a part-time breast care nurse, who was never there to talk to and never rang me back. In the end I just spoke to Breast Cancer Care's Helpline, they became my breast care nurse!
I don’t know what I would have done without them. I was also supported by a wonderful woman through the Someone Like Me service. Talking to someone who had a similar experience really helped me deal with my diagnosis; she understood me.
It was like being thrown back off the cliff
After active treatment ended, all the fear of cancer from when I was first diagnosed came flooding back. While having treatment I felt that someone, either me or the doctor, was doing something to get rid of it. But even a year later I have my fingers and toes crossed that I won’t have a recurrence, or that it hasn’t spread somewhere else in my body. It gets easier with time, I’m told.
There’s no support in Cumbria once treatment ends, so there was no way for me to address any of the psychological impact of having breast cancer. I went: bang – right down.
I’ve had treatment. Why can’t I pick myself up and get on with life?
It shocked me, I’m just not like that. Everyone was telling me how well I’d done through treatment, so why did I feel like this?
I felt guilty for not feeling better once treatment ended
I knew that my family and friends wanted me to be well and ‘back to normal’. But a cancer diagnosis means you’ll never be quite the same as how you were before.
Physically, I’d lost my eyebrows, eyelashes and all of my hair, which had a devastating effect on my self esteem and confidence. It eventually grew back a completely white fuzz, then turned grey. Having never had a single grey hair before it was a huge shock, as I hadn’t had time to get used to it. I didn’t look or feel like ‘me' anymore.
I questioned my identity
I hadn’t been able to work during treatment, as a teacher in a special needs school, so had lost my routine and focus. All these elements made me feel like a completely different person. I lost confidence and self-esteem, and hit rock bottom for a while.
It was difficult to explain this to my family, even though they were so supportive. It was hard for them to imagine that I no longer thought about things in the same way. All they wanted was for me to ping back to how I was before being diagnosed. I’d always been a ‘coper’, a ‘positive’ person.
I learnt to let others help
People want to understand, but without actually experiencing it, it can be difficult. They’ve also been through a lot too, watching and supporting you through treatment. Once the doctors say goodbye you’re handed back to your friends and family, but they don’t always see the psychological and emotional aftermath, and when it hits you it's hard for them.
I also didn’t want them to have to care for me. It was my job to care for them. One thing I learned the hard way is to be kind to yourself, and let others help.
Talking to my family
I was very protective of my two daughters, who were in their 20s. I was honest and told them what they needed to know at each step during treatment, but I didn’t want to say too much or burden them. I worried that they would be concerned about getting breast cancer themselves.
My husband prefers to read or look up things. I was given the information booklet for partners and we read it together. It helped us to talk about breast cancer and treatment, and how the people close to you can feel.
He has been incredibly supportive. It’s hard for people who love you to see you go through it all. They need support as well.
People’s stories helped me explain how I felt
When you’ve been given a life-threatening illness you perceive things differently. It makes you stop and think about your mortality. I’ve become more appreciative of life – it isn’t something to fritter away.
This was hard for me to make sense of for myself, let alone to explain to anyone else. I read blogs on BECCA, Breast Cancer Care’s app, as well as the website and feeds on the Forum, and found things that resonated. I read these to my husband, and they helped us both realise that I wasn’t the only one feeling this way.
It made me want to share my story too, in the hope that it might help someone else and their family make sense of life after breast cancer.
Where butterflies grow their wings
My daughter sent me a lovely quote. I have kept hold of it throughout my breast cancer experience, and will keep it close forever.
When you find yourself cocooned in isolation, and cannot find your way out of the darkness, remember that this is similar to the place where butterflies go to grow their wings.Unknown
Every woman deserves breast cancer-specific support once treatment ends. Join us and ask your politician to campaign for Care After Breast Cancer.