Why our Living With and Beyond Cancer initiative matters – Ceinwen’s story

Today, in the UK, around 2.5 million people have been diagnosed with cancer and this number is expected to rise to 4 million by 2030. A lot of people are living with the consequence of cancer and its treatment. More research is needed into living with and beyond cancer.

Ceinwen Giles was diagnosed with cancer in her thirties and, like many people, continues to live with the consequences. Ceinwen is a patient representative on the steering group for our Living With and Beyond Cancer initiative. Here, she shares her story, highlighting why a project like this is so important.

 

Ceinwen’s story

I was diagnosed with Stage 4b diffuse large b-cell lymphoma when my daughter was six weeks old. I spent the first five and a half months of her life in the hospital receiving high dose chemotherapy.  I have been lucky – my treatment put me into remission and I’ve been able to see my daughter grow up.  My life, however, is profoundly different than I thought it would be.

As a Director at Shine Cancer Support, I work with adults in their 20s, 30s and 40s who have experienced a cancer diagnosis. Many of us think that life will return to ‘normal’ once treatment finishes. My own experiences, as well as those of the people I work with, have shown me that this is seldom the case.  That’s not to say that life can’t be good – but it is never, ever the same.

Being diagnosed with cancer in my 30s meant that any feelings I had of invincibility were pretty much crushed.  I went from thinking I had decades of life ahead of me, to wondering if I’d get to see my daughter start school.

While my treatment pushed my disease into remission, it left me with many long-term side effects, including immunodeficiency (which requires monthly treatment), and fatigue – something I still find hard to manage. The job that I’d worked so hard at became a lot more difficult; I’d travelled for up to 80 days a year to developing countries before I was diagnosed. After treatment, I didn’t have the health or the energy to keep doing this.

While my health care team warned me I would feel tired when I finished treatment, I didn’t expect the effects to be so long lasting and I wish I’d had more information up front about how to recognise and manage fatigue effectively (this might have stopped my crash and burn approach a little earlier!) and also about the emotional impact of cancer. Living with the anxiety of relapse has been very difficult and it’s not something that I think it adequately appreciated or supported in cancer patients, particularly younger ones.

I know from my own work and talking to my doctors that the chemotherapy I had might have other “late effects” at some point. As a younger adult with cancer, who hopefully has longer to live after treatment, there isn’t much research into when and how these effects might come about.

We need to ensure that researchers have a better idea of what issues are of concern to cancer patients of all ages, and that the research that is funded focuses on them. Projects like Living With and Beyond Cancer are vitally important if research is going to focus on areas that are of importance to cancer patients both now and in the future.

 

 

NCRI is bringing researchers and research funders together to collaborate and find ways to answer research questions that should help people live better with, and beyond, cancer.

We need your help and experience of living with and beyond cancer – tell us the questions that you would like answered by research to improve the lives of people affected by cancer.