Finding respite in research

Our advisory panel of patients and people with lived experience of cancer played a key role in creating our current exhibition, Outwitting Cancer. Here, panel member Amanda discusses the difficult decisions that cancer can force you to make. | By Amanda Maister


Long before COVID, the ‘big C’ meant cancer. Before the COVID conspiracy theories, there were the cancer conspiracy theories.   

Once you are diagnosed, you see cancer everywhere - in endless news articles, adverts and fundraisers. It feels like a tidal wave and it is overwhelming.  

No one who is diagnosed with cancer escapes well-meaning friends offering advice at best and sending you crackpot theories at worst. Now if I am ever asked for advice from people diagnosed with cancer I always say ‘don’t Google’. But of course you do and usually at your darkest times.

Making decisions

As a cancer patient, you are suddenly faced with difficult and life-changing decisions. When I signed my chemotherapy consent form, one of the side effects listed was death. Do you really consent to that? Do you have a choice?

Just when you feel at your most vulnerable and compromised you are targeted by people who think a vegan diet and green smoothies are the better option and that conventional treatment is a ‘big pharma’ conspiracy. No one wants to have their body trashed by chemotherapy, especially when you are young and strong. People who criticise the decision you make are taking advantage of the terrible choices you have to make.

I remember being on the tube and breaking down in tears having read an article on my phone about how chemotherapy could be better targeted and fewer patients might need it. It was too late for me as I had already lost my fertility, strength, job and relationship but most of all my confidence in my body. I couldn’t stop myself from sobbing as I wept for everything I had lost, all because of this one little article on a newspaper’s website.

"Getting access to this amazing place and the wonderful people I met has been a light during some very dark times."

Joining the panel

I had my treatment at University College London Hospital and I would walk past the Francis Crick Institute each time I had a round of chemotherapy. I knew that inside vital research was taking place and I jumped at the chance to get involved when they were looking for people for their Patient Advisory Panel.  I am so glad that I did as getting access to this amazing place and the wonderful people I met has been a light during some very dark times.

Despite the panel sessions being all about cancer, I never felt anything other than inspired and enlivened by our sessions.  It felt like such a privilege to meet the Crick staff and other panel members. We all cried together but also shared laughter and found comfort in each other’s experiences and the knowledge of the work being carried out at the Crick.

I felt that my voice and experiences were really valued.  We were given access to some of the top minds at the Crick. Sessions on the practical difficulties of cracking cancer kept me anchored in rationality while being faced with the wave of misinformation in the media.

"If my experiences can inspire researchers to make kinder and better treatments, then that has given me profound comfort."

Facing complications

To say cancer is complicated is an understatement. I have learnt that every answer just opens up another question. The simplicity of online miracle cures is seductive. However, learning the complicated reality of research shows how manipulative these cons can be.

As part of the panel, we had a talk on the funding around research and why it can be so expensive and although the system is far from perfect and there is profit to be made, I also saw how everyone involved wanted to find cures and many had been touched by cancer themselves.

I thought that once my treatment had ended I could get on with my life as before, but it is only when the treatment stops that the implications of what you have been through sinks in.

My time on the patient advisory panel has been an important part of my road to recovery. If my experiences can inspire researchers in their work to make kinder and better treatments, then that has given me profound comfort over a period that has felt truly bleak at times.

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