A lack of energy and feeling a bit ‘out of sorts’ were the first indications Caeleigh Hancock wasn’t at her best

She imagined she might be low in iron or something minor which could easily be remedied by a visit to her GP. Caeleigh had never heard of Polycythemia Rubra Vera (PV) when she was diagnosed in 2012 at 40 years of age.

At first her doctor thought the lab had made a mistake as PV is a rare illness more commonly affecting older males. Unfortunately a second round of blood tests confirmed the diagnosis and Caeleigh was immediately referred to a haematologist.

PV is a Myeloproliferative Neoplasm; a rare chronic disease which has no cure and carries the risk of developing into acute leukaemia.

“At the time I could hardly even pronounce the name of the condition let alone work out what it would mean for me health wise,” Caeleigh said.

“I’d read all sorts of things on the Internet about PV and thought worse case I may only live for a couple of years.

“It was very confusing and a little scary for me and my family but we took a great amount of comfort from the support and information supplied by the Leukaemia Foundation. Through them I’ve been able to form a support network with other blood cancer patients and access advice like how to combat the debilitating fatigue.”

People with PV have a high red cell count that puts them at higher risk of a heart attack, stroke and thrombosis.  It tends to be slowly progressive disease but there are treatments to reduce the risks.  Some people with PV also have high white cell and platelet counts and Caeleigh is one of them. This requires regular checks of her blood counts and from time to time having blood taken out to bring her red cell count down. Caeleigh also takes a low dose of a chemotherapy drug called Hydroxy Urea to bring blood counts down and a low dose of aspirin to reduce the risk of clotting.

Often the personal sacrifices that come with a chronic disease can be just as challenging as the physical symptoms. For Caeleigh sports and athletics were a big part of her life and she’s now had to come to terms with giving up her goal of getting into Masters Sports at an elite level. She’s also had to give up a job she really loves due to the long hours.

“Having a rare illness, I sometimes feel misunderstood. I don’t like to complain publicly though because in the scheme of what other people have gone through it seems pretty inconsequential,” she said.

‘The good thing is that right now I’m still able to work and do some of the active things that I’ve always loved, like jogging and playing hockey. I just have to be careful not to overdo it.”

“My husband, Ian and I have taken the attitude that we should try and live life to the fullest and get out and explore the world while I’m still well.”