US survey on MPN

General chat
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Although it’s from US, I thought it was worth sharing as I could relate to the concerns people had. In particular, I remember being diagnosed and a friend told me it was ‘the best cancer to get’. I’m not sure it always feels that way to live with it. These forums are so important, as talking to others with similar issues helps me deal with my worries more effectively.

https://www.curetoday.com/articles/survey-highlights-the-unique-challenges-faced-by-patients-with-mpns

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Yes, @Lou, this article was definitely worth sharing and your post says it all, these forums are so important, as talking to others with similar issues helps me deal with my worries more effectively as well. Stay safe and keep posting!!

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Thanks @Erica. I wonder if blood cancer sufferers feel like those with lung cancer. You look normal so people assume you’re ok. Roy Castle Lung Cancer Foundation did a campaign on something similar. We need to help people understand how ill we feel, how our mental health is impacted and what support we need.

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@Lou I hope you are doing okay? and thank you so much for sharing, as you rightly say, so long as people keep in mind this is from the US- there’s no reason why many aspects of it can be very helpful to people. Thank you again!

And look forward to hearing peoples’ thoughts :slight_smile:

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A few things in that article ring true for me. The invisibility of CLL is almost annoying - so often my friends tell me how well I look and sometimes it feels like they don’t believe I have a form of cancer because I ‘don’t look like I’m suffering’ as they would expect, based on stereotyping. In addition, it’s hard to express how much additional stress I have experienced this year, dealing with both CLL & skin cancer, the risks of Covid and the massive loss of income and therefore financial insecurity (I’m self-employed). However, we all have our crosses to bear, so to speak, and I don’t want a pity party, just some understanding of the additional issues we face!

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Yes @SpaceAngel, my big bug bear is people saying ‘oh, you do look well’ when I am really feeling rough and struggling. I also have skin cancer on my head and because that is visual I get far more ‘sympathy’.
Financial insecurity is definitely a subject that is not talked about.
Yes, it has been a really stressful year but we will support each other on this forum because we really understand each other.
Please keep posting because I relate so much to everything you say.