Looking Back on a Blood Cancer Diagnosis Nearly 35 Years Later

It’s been nearly 35 years since Nona Baker was diagnosed with essential thrombocythemia, which is a blood cancer, and she is sharing her story with CURE.

Baker is a patient and patient advocate based in the United Kingdom. She received a diagnosis of essential thrombocythemia in 1991, followed by polycythemia vera in 2004. Both conditions fall under the umbrella of myeloproliferative neoplasms, or MPNs.

Essential thrombocythemia is characterized by an increased number of platelets in the blood, whereas polycythemia vera is primarily characterized by an elevation of the red blood cells, according to the MPN Research Foundation.

In a recent interview with CURE, she looked back on her initial diagnosis, sharing her insights.

Transcript

How did your blood cancer journey begin?

I had incredibly painful feet and I was very tired the whole time. My doctor referred me to an orthopedic surgeon who then referred me to a rheumatologist who then took a look at my blood counts and said that I had an alcohol problem when I didn't drink, and that really worried me. My husband was with me, and he said to the doctor, “I'm afraid you've got this wrong. She doesn't drink.” He then said to me, “Well, maybe the machines have got it wrong.”

Anyway, he took some more tests, and I was then referred to a hematologist. But it was quite a bumpy journey to get to there, and also it's really difficult. It's 1991, not a lot of people knew much about these very rare blood disorders, as they were called then. And I think it was a very scary time, certainly for me, because I certainly didn't trust anything, having been told there was something wrong with me that I categorically didn't have, but I soon built a very good bond with the hematologist, who gave me a lot of time and an understanding. And the best thing that happened for me was it explained why I was always feeling so tired.

The treatment, to begin with, because I had such a very high platelet count, and I was originally diagnosed with ET, and then subsequently PV, the treatment actually was, I think, quite scary, because the thing that scared me most was that I looked at the instructions and it said it was a chemotherapy drug, and I went marching into my general practitioner and I said, “What is going on here? I'm being treated for cancer, and nobody has told me I've got cancer.” And he was the most amazing person, because he said to me, “Do you know what cancer means?” And I said something fairly horrific, as far as I'm concerned. And he said, “It's a proliferation of cells, and this is a proliferation of cells in your in your bone marrow.” But that initial scary bit, I don't think really helped me settle into the treatment.

And I'd had problems with ulcers on my feet because the blood was so thick, and I was permanently going up and down to the hospital having those seen to. It was difficult. The side effects were quite difficult too. Because, I was quite young, but there are always side effects to drugs, and they affect different people in different ways.

Transcript has been edited for clarity and conciseness.

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