Patient Story: Frances

Frances Age: 50 Essential Thromobocythemia (ET)

"Of course, there is a feeling of insecurity. There is a sense of taking into account the fact that life is precious, while it lasts. And there are thoughts of what might happen, if..., and of what might have happened, if... 

But briefly, I would say, these thoughts have made me more fulfilled as a human being."

It all started shortly after the birth of my daughter (December 2008): a chronic and slowly worsening feeling of pain in my right shoulder, then my right arm. By the end of the summer of 2009, with my 50th birthday behind me, my right arm was quite numb, I was unable to carry loads as light as a briefcase, or even to write or type on a keyboard, and my hand and fingers were always either asleep or in a state of burning agony. 

My GP diagnosed my condition as a frozen shoulder syndrome, administered a cortisone shot, and prescribed a long series of sessions with a physical therapist. 

Only to make matters worse, as it turned out. I started sleeping abominably bad at night, bathed in sweat, and walking around like a zombie during days. The pain spread all over my body: I couldn’t stand upright from the burning sensation in my toes and heels, nor lie down from the excruciating pain of being continuously stabbed by a hundred daggers in my lower back. 

When one night I was so bloody crying out for help that my wife panicked and drove me to the emergency ward at the local hospital, I was received by a nurse who assured me that this couldn’t be a frozen shoulder and it had to be a hernia. 

This turn of events gave us all some kind of hope. But alas, another cortisone treatment (this time in the colon) brought about even worse pains, particularly in toes and fingers, plus a growing tendency not to be believed anymore when trying to describe what it was that I felt happening inside my body. And yet, I was dizzy all the time, had frequent spells of blurred vision and recurrent night-time body shake-overs. I moved about with hesitant steps, supporting myself with a walking stick. I looked like a ninety year old. 

In early 2011, when my mother-in-law happened to witness one of my agonizing pain spells, she sent me off to a professor neurologist acquaintance of hers, who had me examined inside out for a couple of weeks, only to conclude that I was healthy on all accounts and my pains must surely have a cause in the psychological rather than the physiological area. 

And then, in the summer of 2011, upon coming back from the Middle East, I was struck by yet another bout of agonizing pain in my back, this time diagnosed first as an insect bite allergy, and only upon second inspection (by another GP, my own being out on a holiday) as shingles (zona, herpes zoster). Concerned, the diagnosing doctor told me that ‘such a bad case of zona must surely have an underlying reason’, upon which I conveyed him my assurance that I knew that something was very wrong with me indeed, but that nobody either seemed to believe me or seemed to know what it could be. 

Frowning, he had my blood tested. And then, to my shock, I was sent to an oncologist/hematologist. 

That was the time when I was diagnosed as suffering from essential thrombocythemia, with a platelet count of over 700,000. 

It is truly incredible how at last having been diagnosed correctly, has changed my life for the better. By the simple act, I guess, of taking an aspirin a day, I have been completely painless for more than six months now. My platelet count has remained stable and my oncologist has advised me to start taking Hydrea, which I have been doing for over a month now.
Generally, I feel good. 

In fact, I haven’t felt better for a very, very long time. 

Of course, there is a feeling of insecurity. There is a sense of taking into account the fact that life is precious, while it lasts. And there are thoughts of what might happen, if..., and of what might have happened, if... 

But briefly, I would say, these thoughts have made me more fulfilled as a human being.

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These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.

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