Lisa's story

We're sharing stories from some of our wonderful members of the community who have a diagnosis of Triple Negative. Lisa shares her story.

"My name is Lisa, I’m 44 and I live just outside Edinburgh with my two beautiful cats, George and Jetty. I live in a 19th century miners cottage which I renovated myself. I have three jobs - I’m a stakeholder engagement specialist for an engineering company, I also work for the Co-op doing community engagement with local charities, and I’m a volunteer and patient advocate. Sometimes I have no idea how I cram all of that in, but I do! When I have any spare time I’m a mudlark - which involves searching fields and beaches for anything that I can find of historical interest. In theory, I’d like to put some of the things I find to use in arts and crafts, but in reality, they’re all in a big box in my spare room! I also love going on walks with my friend and his dog Kaz and going to Tynecastle with another friend to watch Hearts. Oh - and I also have secondary breast cancer.

I was diagnosed with triple negative primary in January 2019. I had 16 months of treatment and came out the other side told that I was clear and except for being involved with trials, largely left to get on with my life. I did that - I bought a cottage, I got new jobs, I got two cats. I got awful pelvic pains and feared the cancer was back. It actually was endometriosis. My oncologist was fantastic and even though this wasn’t cancer related, he quickly got me to see gynaecology. 

We managed to get this under control, and then a year later, I found a lump in my neck. I knew it wasn’t good, but the specialists thought they could treat it and remove it. I was relieved until one day before I was due to start chemotherapy, I was told that actually the cancer had spread to my spine. It was secondary. A week before my birthday.

I’ve had my first line of treatment and five month break from chemotherapy, which I never believed would happen. I’m just about to start my second line of treatment which is oral chemo tablets. I’ve not had a single day off sick since I was diagnosed the second time. I have three jobs and I just get on with it - people tell me to make time for myself, but my time is always about others and helping others. I don’t know how to do sitting back, I feel if I stop I’ll never start again.

But I still struggle. I have real anxiety about every single ache and pain. I sit in my bed awake in the middle of the night, fearing what’s going to happen when I actually get ill from my cancer. Fearing having to tell my family and my friends that the cancer has spread further, dreading the day when nothing else can be done. Who’s going to look after my cats, who’s going to support my friends and family?

Secondary breast cancer doesn’t define me - but cancer does. And that’s my choice. As a patient advocate and volunteer I help researchers develop new ways of monitoring and treating cancer. I pass on my experiences to help others, and I use my professional expertise to help communicate all of this. I provide a friendly face and a cup of tea for anybody who wants to come and talk and get some advice with Macmillan @ Edinburgh Libraries. And I’ve met some wonderful people and made some fantastic friends as a result of having breast cancer. 

Whilst you never get a break from secondary breast cancer, it is a welcome pause to be able to go to a Make 2nds Count Tea & Chat session and meet with other women who really get it and have a chat, a laugh or get some reassurance about anything on your mind. I would not wish this illness on anyone but I am grateful for being able to make new friends in a supportive, relaxed environment. Make 2nds Count makes me feel less isolated and welcomed.

I can’t change the situation that I’m in. I wish I could, it’s truly awful at times, but I can do everything within my power to make things better for those who follow. I hope that one day, everybody diagnosed with triple negative breast cancer has a plethora of options available to them and that they are all kind and they allow people to live for many many years. Even better would be to see this dreadful disease eradicated. I’m stuck with it. This is my life but it’s also my legacy." 

Thank you to Lisa for sharing her story with us.