Darlaine’s story

I’m a founding member of a cancer charity, so there’s always something to do  

Recently I’ve been volunteering at The Royal Marsden, helping with patient and public involvement. I also like to get involved with research. I’m a part time research volunteer for Breast Cancer Now and I’ve been involved in a recent funding project.  

The researchers are amazing people. They’re so kind and helpful to patient advocates, helping us to understand the “what” and “why”. In April 2024, I met with some amazing lobular researchers from the UK and around the world, and they really were the best. Some of the science went right over my head, but I managed to understand a fair bit and the scientists were amazing.  

Outside of volunteering, my biggest passions are art, photography and dancing. I’m also a bit of a birdwatcher, and I love being by the seaside in the caravan from spring to summer.  

We need to address the elephant in the room, lobular breast cancer 

I have invasive lobular breast cancer. This means my cancer has a higher chance of having passed through my lymph nodes as I was 2/3 lymph nodes positive. Lobular grows in a single file of cells, without disturbing the normal structure of the tissue. It could easily, and most likely, be sitting quietly somewhere waiting to kick off. This sometimes feels like I’m living under a cloud.  

I’m so passionate about raising the profile of lobular breast cancer so we can make more people aware of it. We all need better access to screening and information about breast density, as lobular is less visible in dense breasts. Currently, lobular has no specific treatment so there’s lots of catching up to do.  

I take nothing for granted anyway, but even less so now 

When I was told I had breast cancer, I didn’t shed a tear. I’m not hard, just older and pragmatic. I’ve become more upset that I have to fight so hard to get people to listen about lobular breast cancer. It’s shattered my confidence in myself as a woman, my body especially. This was made worse by having to advocate and argue for myself throughout my experience, due to the lack of awareness about lobular.   

Friends and family expect you to be back to ‘normal’ and be your old self once your surgery is done. But the thing is, you’re different after. Very different.  

During and after treatment, I didn’t feel lonely as I have wonderful family and friends, but I definitely felt and still feel alone. Not in a sad way, but my body no longer works like it did. The ongoing hormone therapy treatment can also be harsh. They have a shocking impact on your sex life, your body can get all sorts of aches and pains in your joints. And my hands are often nearly completely useless. 

There is something very special about the cancer community 

I’ve been involved in some amazing projects. I’ve helped with some incredible research and been able to give back in so many ways to other women, in the same way that lots of other women gave to me. They ‘get it’ and are so very supportive.  

I help with our Facebook group which is a safe place to let off steam, swap ideas and tips, and have each other’s backs. Often people don’t feel that they can’t let rip with their family or friends and so they can hold back for fear of frightening them. Together, we all get it. We know how it feels and that’s why the group is so important.  

The more we talk about it, the more we can normalise that breast cancer is not generic 

I’m a campaigner for lobular breast cancer. I just hope that mentioning the word lobular resonates with someone. They know someone else is having some of the same thoughts and feelings as them. I want to just say the word and speak about my diagnosis, so people hear the word lobular.  

There are so many different types of breast cancer, with different outcomes, treatments and needs, and I really want to help raise awareness of this. I don’t feel it’s always shown in the media.  

The wear it pink photoshoot was amazing! 

I loved it. Breast Cancer Now has some amazing people working for them, always so kind, generous of spirit and helpful. It’s still important for us to wear pink, it shows solidarity for all of us going through this.