Giving a little back part 2: So I was diagnosed in... - MPN Voice

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Giving a little back part 2


So I was diagnosed in January and after the initial shock, I think I accepted it fairly quickly but the difficulty I have now, 5 months in, is dealing with how un-predictable this condition is. Some days I can completely forget I have this cancer, I feel good and I go about my business as usual but this can be followed by a day of extreme fatigue and bone pain. There seems to be no pattern to it whatsoever. Lately, I have noticed, I get every cold and infection going. I have had to cut my work hours too but there are some weeks where I just feel too ill to work at all. I try to work out 3 to 4 times a week and this does help me a lot. Even if I am really tired, I push myself to do some hard exercise and it works! I feel much better afterwards and it also helps with the pain. I also eat very healthily but I have to confess that I am not so good at cutting back on the white wine!

Another aspect I have found irretating is other people constantly commenting on how tired/shattered/ill I look on a bad day. As if I don't know already! And I know friends and family mean well but it is not helpful asking me how I'm feeling all the time. It is as if they see the cancer first and me second. It creeps into every conversation, it's the white elephant in the room. Maybe this will change over time.......

4 Replies

and I complain because my husband only asks me how I am after i've just come back from the heamatologist! Do you think we could mix and match?

Hi glassaddict, I know how you feel about the initial shock - the "c" word!! Some days I am able to almost forget what I have. When I have a good day my spirits go up and then the next day can be awful. I struggle too to find a pattern. What I try to do is make the best of the good days without overdoing it! I am struggling at work too and the exercise does definitely help.

I do eat my five a day and more and (the family laugh at me) I have a drink of ribena daily to keep up my vitamin C levels. I get very few colds, etc so whether it has to do with my ribena or not - who knows!! I have worked in schools for years so perhaps I have a built in immunity to some bugs! What I need to do now is lose weight but not easy when exercise can be a big challenge!

Some days I get told I am looking shattered but I think it is worse being told I am looking well when I am feeling sh..! My husband recently had a neck op and I have found the extra support he has needed hard to cope with and also deal with my symptoms at the same time.

What kicks me back into reality is one of my colleagues who has young children whose husband has terminal cancer. When I see and hear what she is going through, I think well I am lucky compared with her family.

Remember you are not alone - this forum has been a godsend for me. Take care, best wishes Aime x

Thank you for your thoughts and sharing with me. And yes, it is all about keeping a perspective and maybe try to distract myself from the situation would not be a bad idea either. Maybe I should book a break away! Best wishes to you both Kira x

Hi Kira

Oh that sounds such a good idea. Aime x

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