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MPN Voice
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Let's count our blessings

Hi everyone,

Ok I know I'm jolly irritating always saying let's look on the bright side, but honestly, put your hands together.

I've just come back from a day at the Christie in Manchester. Super treatment, slightly high haematocrit so had a venesection which cleared the fog and the headache I've had for the last week.

I met up with a delightful lady again ( I see her every time I go as she attends the clinic weekly) who has a rare form of leukaemia. Her hands are black as is one side of her face. Nevertheless she remains cheerful despite obviously feeling utterly ghastly.

Next to me in the " treatment" room ( chairs to die for - thinking of smuggling one home) was a chap of about 70 who has non hodgkins lymphoma. He has lost the sight in his right eye which has swollen to the size of a golf ball, and protrudes through the now empty lens of his specs, because the lymphoma is in his sinus glands and hence spread to his eye. Also a jolly chap.

Yes, I know we all have our problems, fatigue, muscle and joint pain etc, but really you know - we're the luckier ones. I came out and said a silent heartfelt thanks to 'im up there.

Let's be positive and thankful that none of us have anything more serious than PV or ET.

Best wishes


10 Replies

Thanks Louise, can always rely on you for good words of wisdom. Totally agree with you.

I try to be positive most of the time with the occasional wobble.

Must be the day for visits - I've seen my haematologist today (for the last time as she is retiring unfortunately). She was very positive about my MPN. No sign of transforming to MF even after 11 years so I came out feeling very good.


Totally agree with you Louise. I think we all need reminding of this every now and then. Although it us hard for some people when your quality of life is compromised. It's like when you lose a dear friend or family member, it gives you a kick up the butt to start with but then after a while life takes over again and we all start to moan and groan about things that in the big scheme of things arnt important.

Thanks for reminding us.

Judy xx


You are so right!! I spent yesterday afternoon visiting a friend, who is younger than me, who has vascular dementia caused by a stroke. Every time I visit I say "there but for the grace of God go I". Seeing her makes me appreciate the life I have, tomorrow I'm going with friends to a Christmas fair, she should have been coming with us. We'll complain about the crowds and our feet hurting but then be glad we are able to be there.

We are, in the main, the lucky ones.


Good words of wisdom hope you have c a lovely Christmas x


I tell myself everyday how lucky I am love life x


I completely agree - we are indeed blessed to have our condition diagnosed and identified. We should count our blessings every single day and be extremely grateful.


With advancing post ET/MF I can no longer even change a bed or clean a room without stopping to rest but hey - I have a cozy chair to rest in, food on my table and a roof over my head. I need a transfusion about every four weeks but have lovely people looking after me. I have four sons who are all doing well in life and I will see them all at some point over Christmas. They all make a point of phoning their mum regularly and my son who is a daddy has just moved his family back from San Francisco and now lives less than 100 miles from me and I get to see my one-year-old granddaughter in the flesh rather than photos! Do I think I have it tough with my disease? Hell, yes I do some days but do I count my blessings? Yes and they far outweigh my challenges. I am a truly lucky person.

Best wishes to you all



I agree wholeheartedly. I do not in any way want to trivialize the suffering of many of you on this forum whom I know have severe problems and difficulty coping daily.

Keeping things in perspective is what matters. Itchy legs, tiredness, red eyes or whatever symptoms or side effects we get, can seem minor in comparison to the trials of some. I feel it is important grab life and remind ourselves that life is good. We have to realize and acknowledge this, otherwise we miss out on the chance to feel lucky and blessed.


Some of us do. Due to my ET I had a liver transplant over 10 years ago. My news today is I'm on the list for another - ET has clotted my hepatic artery. Not saying I'm not in good form or not being optimistic; maybe I just need to let off steam to strangers as my family have been through a lot with my health issues already....don't want to worry them...

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So true! Any time I start to feel even a tiny bit sorry for myself I remind myself how very lucky I am.


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