People say to me ,oh really ,,you don't look ill.even on my way out of the doctors office .again this week ..

[Twinkly]

So I don't bother to tell them ..people ask me .."hi how are you ?" I say well actually .." I'm fine " I bet you say the same ..but it's not always the case is it ? ...I'm on the Majic trial .so I take ruxolitinib ..luckily for almost 2 years it has suited me very well .but just recently iv begun to get more infections ,so now I'm on my third course of antibiotics ..feeling orrible .....but I'm still answering ..." I'm fine " .........twinkly .xxxx

[mol56]

Hi Twinkly. Yes. I'm the same - always say I'm well thank you even when I feel under the weather. Had a conversation last week with a fellow W.I. member about a mutual friend who is under going treatment for acute leukaemia and I explained to her about my MPN as best I could. She said that she had no idea and that I always looked so well! Still that's better than looking awful, I suppose.

[Inca]

You are so right Twinkly,it seems I think As the years go on with MP Ns ,we do seem to get a weaker immune system,the drugs no doubt. And ,yes we look fine when we meet friends,or go out,but the effort often is tiring,just to make the best of ourselves.My bad times I 'm like the un dead!!!!Hope you soon pick up ,you are a strong force on here,Best Wishes to you,and your beautiful dogs,they give us a reason to be ,and don't care what we look like,cheer us when we are down...they know don't they,the bad days.Chin up,warm wishes,Sally

[Loubprv Volunteer]

Good morning dear friend!

I read a great reply on this site a few weeks ago re the same topic which went something like this - yes I don't feel too bad, just on my way to the oncology department to have my new cancer drug results checked out, the side effects are causing the specialists rather a lot of concern!

xxxx

[Twinkly]

Oh Louise ,,that's so good to read ,,exactly my point ..telephone conversation ,,as follows ,,hi Vi how are you ?? I'm fine thanks ..how are you ? My hip is stiff, I'm tired can't sleep,can't loose any weight ,got a hangover ,went to a bar beque drunk a bottle of red ! Can't come out today ... I rest my case ,,, Tum. Tee tum ....xx

[Nickthedevil]

Twinkly you are so right. I always say yes I'm fine thanks and it's nearly always not true!! Sometimes I try to be truthful and say actually I feel terrible, but I always end up feeling like a moaner who is feeling sorry for herself, and let's face it most people don't want to hear it (apart from my wonderful long suffering husband!).

Your posts always brighten my day. I hope you are off the antibiotics and feel better soon.

Karen x

[Hidden]

Hi Twinkly you hit the nail on the head!!! Thank you for your wonderful twinkly ways. You make us smile😀😀😀 hope your infections go quickly. Big huge hugs xxxxx