One of the hardest things is that it’s a ‘hidden’ condition

MPNs are a group of rare blood cancers which can often remain stable or progress quite slowly, but can present many challenges for those living with them. Here, Jane shares her experience of the disease and her advice for those who have recently been diagnosed.

I was diagnosed in 1992 with an MPN that had features of myelofibrosis and essential thrombocythaemia (ET), and from the outset I was told that my disease was difficult to classify. I was in my thirties at the time and it came as a huge shock, in those days not much was known about MPNs and the treatment options were limited. I can remember feeling very scared.

No information booklets were available, there were no clinical nurse specialists and I wasn’t even given a drug information leaflet. I was just sent to the pharmacy to pick up my medication and was told to start taking it the following day. To be honest I thought I had been handed a death sentence.

All sorts of scary words and abbreviations were being used and it would have been so helpful to me to have a point of contact in between appointments so that I could ask questions and get information. I remember having to do all the research myself and contacting Blood Cancer UK to find out more information.

Fortunately, I had an excellent GP who offered to refer me to a specialist hospital to get a second opinion. The haematologist who looks after me now is very knowledgeable and I am confident being under his care.

I find it very difficult when people comment on how well they think I look because I suffer daily fatigue, anaemia, pain and other symptoms.

There seems to be a lack of understanding of blood cancer in general and all the issues that accompany it. Having a ‘hidden’ illness has made me far more understanding and sympathetic of others and I try not to make assumptions based on how someone looks. I realise there is so much more going on than a person’s physical appearance!

Try to find a sympathetic GP who takes an interest and don’t be afraid to ask to be transferred to a specialist hospital. Also make sure to ask if you can have contact with a clinical nurse specialist.

At the point of diagnosis, my psychological wellbeing wasn’t addressed at all and I felt I was just left to get on with it. Therefore, I would really recommend arranging sessions with a therapist if you feel it would help you.

It was years before I had the courage to ask for help with my mental health and I continue to have regular sessions with my therapist. I find it so useful to have an independent, caring person with whom I can ‘offload’. Often, we don’t want to burden our family and loved ones because they have their own concerns about us.

I’ve also found the Blood Cancer UK forum to be a great place to share with others who understand what I’m going through, I’d really recommend it.