Blood Cancer Awareness Month - interview with Markus Taylor

Blood cancer is the fifth most common cancer in the UK, and the third biggest cancer killer.

It is Blood Cancer Awareness Month, and statistics published by Blood Cancer UK highlight the importance of raising awareness of blood cancer. The Sussex Cancer Research Centre spoke to Markus Taylor about his lived experience of blood cancer. Markus shared his view on the statistics, his experiences through diagnosis and treatment, and his hopes for the future of blood cancer research.. 

78% of people with blood cancer describe it as a hidden cancer.

How would you describe your experience with blood cancer? Do you feel it is a “hidden” disease, and if so, in what ways has that impacted your journey?

Having CLL you don't look ill, there are no obvious outward visible signs of disease. Just prior to and during treatment I looked a bit 'grey and tired'. Therefore, it's difficult for others to see how unwell you really are.

To the general public I feel that blood cancer isn't as 'visible' as other cancers: breast cancer or prostate cancer for example. As we know, being more visible helps early detection, diagnosis and understanding. 

31% of people with blood cancer have to visit their GP three or more times before being diagnosed.

Can you share your experience leading up to your diagnosis? Did you face any delays or challenges in getting a clear diagnosis, and how did that affect you?

My GP told me, after a routine blood test, that I 'may have Chronic Lymphocytic Leukaemia'. I had to get him to write it down on a piece of paper so I could look it up when I got home. Through eyes of panic you are left searching the internet for answers, unable to critically assess what you're seeing.

Although my GP made a referral straight away there followed a three week wait for another blood test at the hospital. 

76% of people with blood cancer say they were not told their condition was a type of blood cancer when diagnosed.

When you were first diagnosed, how much information did your doctor provide? Were you immediately aware that your condition was a form of blood cancer, and how did that affect your understanding of your illness?

The difficulty here is the use of language. 'Medical speak' is disempowering and an act of seperation. Specific, technical language is used to describe the pathology of disease, it is not the language of the individual with disease.

I struggled to understand the complexity of my illness. I had to quickly learn the meanings of the language used. I had to ask many questions in order to gain an understanding. Not everyone has access to complex language skills or have the confidence to be able to ask questions.

All of the complexity of disease is not easily understood when you are in a state of shock and distress. All of this difficulty with language compounded the sense of helplessness and led to feelings of frustration and anger.

58% of people with blood cancer are unaware of any support available to them at the time of diagnosis.

Did you feel informed about the resources or support groups available to you after your diagnosis? How important was support in your treatment and recovery process?

A blood cancer diagnosis often comes out of the blue for many. In a state of shock, it's very difficult to reach outward in a rational manner to ask others for help. I felt completely isolated. I gradually became aware of resources and support groups. Blood Cancer UK's referral scheme is a very good idea. Having someone reaching out is better than stumbling around blindly searching for direction. To have someone telling you where to go for support would help enormously. GP's should be empowered to offer support pathways: if you're going to tell someone they have cancer ensure you can give them clear guidance: Blood Cancer uk or MacMillan booklets are excellent. 

47% of people with blood cancer do not feel part of a community, despite 70% of these people saying it is important to them.

Have you been able to connect with others who are going through similar experiences? Do you feel a sense of community, and how important has that been to you in coping with your condition?

I am very fortunate to have forged a friendship with someone who like me has CLL. It's vital to be able to talk openly and candidly with those who know how it is. For me personally I find online forums difficult for in depth conversation, empathic understanding and responsible communication. Having the MacMillan Horizon Centre is very important for its support groups and as a peaceful space to have some head space.

Cancer research plays a crucial role in improving treatments and outcomes for patients.

Blood cancer research is a major theme of the research within the SCRC. How important is cancer research to you, and how does engaging with research impact your journey? What changes or improvements would you like to see prioritized in future research?

Knowing that research into blood cancer is happening gives you hope and confidence. The cutting edge research happening here in East Sussex, with the support of Blood Cancer UK and the Sussex Cancer Fund, is enabling further advances across the world. Having the privilege to meet and discuss with scientists across SCRC and BSMS has been incredibly empowering for me. Working with researchers in producing artworks has literally brought some of my cancerous cells via the lab into the gallery. Dragging blood cancer out of the shadows and into the light via research and multidisciplinary collaboration is vital in ensuring a positive future. Research leads to lives saved. 

Thank you so much for your time and insight Markus. Where can people find out more about your art practice?

@markus_taylor_studio on Instagram you can find links to interviews, videos and exhibition images.

As well as creating works for exhibition I volunteer at BSMS as a Patient Educator, a Haematology Insight Advocate alongside Pepper and Mitchell labs and as a visiting lecturer at the Institute of Cancer Research London.