Tim Jonze - ET

[Cassandra61]

theguardian.com/society/202...

Hiya,

The above link is for an article by Tim Jonze in the Saturday Guardian yesterday about being diagnosed with ET (and other things) .

My partner was reading it and said " Hey this is about that ET thing you have" . It was so wonderful to see our cancer talked about in the mainstream media and it not be the thing that nobody has ever heard of, that sounds utterly terrifying and often is, and to be recognised. I have had no where near the ghastly journey that Tim writes about but it felt so good to be visible . I know how lucky I am. I know how lucky we all are to have MPN Voice , there for us with support and lived experience and encouragement.

Good luck to Tim on the charity run - there is a link to justgiving at the bottom of the article and thank you for making me feel less invisible. Thank you to MPN Voice for always being there.

[Woodlandgarden]

Hi Cassandra 61, great article, thanks for sharing ☘️

[Ebot]

Thanks for the link.

And 👏🏻👏🏻 to Tim for putting out that piece. Good luck with the run!

[Timjonze]

thanks for posting Cassandra and v pleased the article made you feel visible - that’s such a compliment!

[beetle in reply to Timjonze]

hi Tim. I loved your article. What a gamut of emotions! I was initially diagnosed with ET in1994 when the internet was just in its infancy so I didn’t have access to scary or reassuring posts. “Keep calm and carry on” seemed the only option for a mother of four boys under 13. So that’s basically what I did! I kept the appointments and took the tablets. Here I am 29 years later and now a grandmother 3.5 times over. (The .5 is a bit generous as it’s early days yet). I have been through the MF progression and I’m currently awaiting the results of another bone marrow biopsy to see what’s going on but am probably about to start on heavier duty chemo. I was in A&E with a raging temperature just this last Friday and the nurse told me how well I looked!!!

My advice to you right now is put your ET on the back burner and just have a great time watching your children grow up and make you a grandfather. There is so much more to life than pills and hospitals - and don’t forget to enjoy the sunshine and smell the flowers 🌺

By the time you are 29 years into your MPN journey who knows what treatment options - and maybe even a cure- will be available

Good luck and very best wishes, Jan

[Timjonze in reply to beetle]

that’s excellent advice Jan and hope your results come back ok

[Sherpa8 in reply to Timjonze]

Hello Tim. I was so interested to read your article. So sorry for the whole traumatic journey for you & your family but so appreciated (and related to) the zoo moments! Etc.

I had 3 months of ‘consumed bleakness’ last winter; when I was sent to a new consultant & the reality of MPN progression unfolded. Then I too panicked thinking “ is this the last time I’ll see …… or do ……..” I spent the summer months taking my husband & son to all sorts of places & activities, things for them & ticking off my list!! Then I had an epiphany moment ( came to terms with things I think) and stopped wearing myself and my family out! We all have to live for the moment 💜 Great journalism Tim and the way you justified your son waking up at 4am made me laugh so much! Thanks.

All the best with your journey.

[Timjonze in reply to Sherpa8]

thanks for the lovely message and pleased you’re living happier now - the stress to make things count stops you enjoying things!

[Otterfield in reply to Timjonze]

Hello Tim, I want to thank you for using your position as a journalist to draw attention to MPNs. It sounds like you had a traumatic time during a rather long, drawn out diagnosis, which shocked me. Hope you are feeling well and enjoying life now, Jennie

[Timjonze in reply to Otterfield]

I am and hope your are too

[Otterfield in reply to Timjonze]

Thank you. I had an unambiguous case of Myelofibrosis and had a stem cell transplant last September. A horrible experience and I'm still having fortnightly monitoring, but it was absolutely worth it as I now have a future to look forward to.

[Timjonze in reply to Otterfield]

I’ve just through your posts. Sounds unbelievably tough. But so amazing you’re getting through it and here’s to more recovery and a bright future

[MWxxxx in reply to Timjonze]

Hi Tim. I also loved your article and cried and laughed my way through it. It struck such a chord with me, as I'm sure it has with so many. My journey for diagnosis wasn't quite as dramatic as yours, but I remember when I was first diagnosed with PV I was told it wasn't cancer and I would just need some blood taken off me every so often. Within 3 months, I had started aspirin and hydroxy and was told that wasn't working either. I had to find out for myself that PV was actually a cancer. It's shocking when you realise that the professionals treating you can't even agree whether your condition is a cancer or not - it kind of makes it embarrasing when you try to explain it to other people! Four years later and I am still taking hydroxy (professionals eventually decided the hydroxy was working well enough for now) and apart from fatigue and aching muscles and bones am doing ok. I have also had experience of a hydatidiform mole and know how sad and devastating that is. Mine was many years before my PV diagnosis so I can only imagine how difficult it was for you and your family to be going through both at the same time. Thank you for such a brilliantly emotional article and for bringing this subject out into the public domain. I wish you and your family all the very best for the future.

[Timjonze in reply to MWxxxx]

thank you so much - wishing you all the best with your PV journey

[Cassandra61 in reply to Timjonze]

Just look how much good your article has done, surely the point of journalism - thank you.

[Timjonze in reply to Cassandra61]

I’m very overwhelmed and touched by all the comments!

[Exeter21]

really good piece & quite a few of us on here can relate to Drs that were poorly versed in information to us 👍

[Timjonze in reply to Exeter21]

it seems so! Thanks

[Janehale]

Excellent article and as someone with PV it really resonated,both my sons read the article and gained an insight into the condition.

[Timjonze in reply to Janehale]

I’m really pleased to hear that

[Jazzyb50]

Excellent article!

[Timjonze in reply to Jazzyb50]

thank you

[EmeraldA]

Thank you Tim for writing this article and am so glad that it was in the main stream media. When MPNs are publicised like this it make me me feel like what I have is less invisible and that ET/MPN is actually a thing and not a bunch of letters you tell people sometimes. Your experience mirrors mine. The only difference is that initially they thought I had MF, eventually diagnosed with ET). Bx

[Timjonze in reply to EmeraldA]

well that’s a relief for you … I think it’s easier to forgive misdiagnosis when it works in your favour!

[pontygirl]

Hi Tim

Thank you so very much for this fantastic article, I am simply echoing the sentiments expressed by fellow members here..

You have certainly put us centre stage with this article and I suspect that many who are just navigating through this minefield of misinformation and understanding of this affliction will benefit from the article, if lucky enough to read it..

My own experience was similar not as drastic as yours but to be told rather coldly that “ I have Blood Cancer and I must start Chemotherapy immediately “ …

Was cold, uninformative and terrifying…

I refused to start the Chemo Drug referenced I needed to know more about my very new situation..

I got up to leave and the Haematologist proffered the leaflet stating, “ if you want to live then you will start Chemotherapy, if not you will soon die”….

I was horrified my husband was in the waiting area and when we linked up he naturally asked what it was all about, I said I would tell him at home after I had more Bloods done …

I sat in the waiting area with a hundred things running around my head.

A McMillan Nurse appeared trying to find me, she knelt beside my seat and said she had just been told of my Cold Introduction to ET, the tears started to flow and my husband was totally unaware of what was taking place..

Being a Nurse at that very hospital I was hugely embarrassed by crying in public etc..

I saw a different Haematologist few days later who was wonderful.

She accepted my need for research and understanding of it all, she did the BMB and I waited the 6 weeks for the results, I already knew I needed to see an MPN SPECIALIST for second opinion etc..

Yes I have MF and yes I started on Hydroxycarbomide I now take Ruxolitinib…

I discovered this wonderful forum two (2) days after the Hospital Disaster on the Friday..

Saturday morning a letter told me I had Abnormal Breast Screening and I had Surgery for that very quickly, all okay!

However the impending doom of Blood Cancer hung over my head..

I simply had to get knowledge about ET, I found the Forum that weekend and one lady in particular helped me immensely with the ET situation and helped me deal with the letter about the Boob Issue..

Some 18 months later the Haematology Unit at my local hospital rang me to ask if I was happy for my contact details were given to a lady that was just diagnosed with MF in the hope I could help her..

I first referenced patient confidentiality and what if the lady in question was someone I knew.

I pointed them in the direction of our Forum and Maz ensured leaflets of the existence of Forum went to the hospital…

How sad that folk are not given the right tools to find independent help..

So you’re article is quite priceless in my opinion….

Diagnosed May 2018 with MF and doing well..

Thank you Tim

Kindest Regards

Maria 😀

[Timjonze in reply to pontygirl]

what a complicated and traumatic situation and very pleased to hear you’re doing well now

[john0084]

I agree what a great read that was, one thing Tim didn't mention was the jak2 mutation, maybe , if he didn't have that then the diagnosis is difficult. We need more articles like that , help the understanding of the symptoms that confuse the medical people.

[Timjonze in reply to john0084]

thanks John. I do have the Jak2 mutation. I think what made them think it was worse is that my spleen is 22cm which is very large for ET / PV