Malignant Diagnosis, Surely?

Kes had a long road to her myelodysplastic syndromes (MDS) diagnosis, which was finally confirmed in 2000. However at this time, little information was available for MDS patients and there were conflicting ideas on whether MDS was a cancer, pre-leukaemia or bone marrow failure. Here, she discusses the importance of MDS being treated as a cancer…

“When I was diagnosed with myelodysplastic syndromes (MDS), there wasn’t much quality information accessible. I was having tests and had a query diagnosis of MDS for a couple of years before I reached my definitive diagnosis in 2000. At this time, trying to find expert medical and scientific data was hard and patient support groups were few in number and mostly run by volunteers. It was difficult to find information that was relevant to me, as there is such a vast quantity of different types of blood cancer.

Because there were different ideas of what my diagnosis was, it made it hard to tell people about it; there was a debate at that time on whether MDS was a cancer or pre-leukaemia. So, when people would ask why I looked so pale I would just tell them, “Oh, I’ve just got a funny blood disorder”. Pre-leukaemia was then replaced with bone marrow failure until there was enough medical knowledge to say MDS was indeed a rare blood cancer.

To some, it may be frightening or disturbing to be told you have cancer when being diagnosed with MDS. From my experience, people will worry anyway, despite whether you tell them or not. People will close their ears if they don’t want to listen. Factual information given with holistic care has to be the gold standard.

My mum had a terminal diagnosis. Her consultant asked me to tell her. He sat on one side of the bed and I sat on the other. I gently told her what was what, and she just closed her eyes. The consultant reiterated what I had said, but she didn’t open her eyes. I squeezed her hand and asked her, “Mum, did you understand what the doctor just said?” and she spoke back, “I don’t want to talk about it,” and that was that. We never did.

I, on the other hand, am the exact opposite. I want to know everything. I don’t get stressed or frightened, but psychologically I need to understand what is happening and how I feel about it. In my work as a hospital chaplain, I helped many in their preparation to die. Most people (given the chance) want to ‘put their house in order’. There may be many conversations that need to happen so people can die in peace with no regrets. However, they can’t do that if no one will talk about things. Having said all that, it is important to acknowledge that many will die with MDS and not from MDS. There are still huge quality-of-life issues, so open communication is vital in my opinion.

Cancer support services are vital for those with MDS; they can really make a difference in many people’s experiences of living with a cancer diagnosis. MDS UK has been such a support to many; you can have a friendly chat or scroll their website for expert knowledge.

The MDS community is small and those of us that use social media find that it is a great source of strength and support. It helped me in the early days to hear from people who had trodden this path before me so I do it now to put something back in.

A good relationship with your clinical nurse specialist (CNS) can also be a valuable support. Many large hospitals also have psychologists attached to haematology departments. In the early days, this was a resource I used. Phil (the psychologist) wasn’t just great for me but was great for my partner too. Family members are often the forgotten victims in all of this and they need support too.

As you can imagine, after 22 years of living with MDS my experience is vast. I feel like I have a lot to contribute that would be helpful to medics and patients alike. I am passionate about raising awareness of MDS and the huge impact it can have on people’s lives. It’s a shame that some places don’t recognise that experience.”

Read more of Kes’ road to diagnosis here.