Guardian article today

[Inclement]

The Guardian today, 9 April, features a full and detailed account by journalist Tim Jonze of his own diagnosis of blood cancer. His journey was mixed and shows very well the lack of experts in the field. He ends up praising MPN Voice which is good publicity.

[JohnSC]

Thanks for pointing out the article, I found it very interesting.

[DJK12]

I read this earlier. It certainly was a roller coaster of a ride to diagnosis. I had a similar experience in 1985 when the consultant was very gloomy. Perhaps quite understandable with their limited understanding of MPNs, fewer drugs available and mutations yet to be discovered, but I hoped things had improved since then so patients are less traumatised. Good shout out for MPN Voice.

[Mostew]

excellent article…

[mhos61]

Thanks for posting this. I will read it later.

Tim Jonze is a forum member and it’s not the first article he has written on his diagnosis. So good to have a MPN champion in the media!

Thanks Tim

[ETket]

Reading this article directed me to MPN Voice. I was diagnosed with ET eight and a half years ago at the age of 37 following a routine blood test. It took me three years of attending appointments in the oncology department of the local hospital to clock on to the fact it was considered a cancer! It is useful to hear of other people with MPNs.

[DougyW in reply to ETket]

I like this site but also use the Blood Cancer UK site. Well worth a look for general advice and support

[ETket in reply to DougyW]

Thank you. That is useful to know.

[SoledadBarcelona]

Where can we find this article? Can you send the link, please? Thanks

[Mills55 in reply to SoledadBarcelona]

theguardian.com/society/202...

[PhysAssist in reply to Mills55]

Hi Mills,

Thank for the link!

Best,

PA

[Lola367]

A great article and a real rollercoaster to diagnosis - thank goodness for second opinions! Thanks for sharing - I particularly liked this quote "I am now doing what I once thought was unthinkable: living happily with a chronic, incurable blood cancer. In a way, I am living happier because I have a chronic, incurable blood cancer." This is how I feel about having ET summed up in a nutshell.

[Beachmum22]

Thank you for sharing. As a ( youngish) newly diagnosed with ET, but mostly likely had for over 10 years it was really helpful read. The threat of progressing is always there but a good reminder to live for today and try not to think too much about the future .

[Sherpa8 in reply to Beachmum22]

Exactly that, live in the moment if we can but certainly take a day at a time and not to worry about what has not happened yet!

[Otterfield]

This was really interesting to read. I was shocked by the bumpy and terrifying road he had to accurate diagnosis.

[Cassandra61]

Sorry, I have just posted about this and missed your post.

[Hidden]

Thank you for the link - what a traumatic journey.