Christmas Guardian article

[Timjonze]

Hope everyone has a lovely Christmas. I’m sharing a little article I wrote about living with an MPN and what it’s taught me - hopefully not all gloom but lots of positivity too! Here’s to a great 2020 everyone x

theguardian.com/lifeandstyl...

[piggie50]

Thank you for sharing your story. It shows there is always hope.

Happy Christmas to you and your family.

Judy x

[Mazcd Partner MPNVoice]

Thanks Tim and for the link to MPN Voice. Merry Christmas, Maz

[Paul123456]

Inspiring write up Tim

Are you taking Pegasys now?

Trials have indicated that it can reduced progression for early stage MF. And might hopefully reduce your spleen if still enlarged?

Best wishes for Xmas

Paul

[Timjonze in reply to Paul123456]

Still just on aspirin for now and happy with that. Docs were quite wary when I brought up peg - said the effects could be tough. But I’ve read good things on here so will pursue in future when the time comes. Happy to stick to aspirin for now. Have a great Christmas Paul

[Paul123456 in reply to Timjonze]

A lot of debate on Peg side effects! When I had my first shot (45 mcg) the family gathered to watch! I think they were hoping for something similar to that Aeroplane scene when the Captain is told he’s eaten the dodgy fish. Nothing at all, massive anti climax.

I’ve been as high as 120mcg and no issues. Now back to 45mcg.

I think about 15% of users struggle with Peg side effects. If you read all the Forums, Peg users generally view it as a wonder drug. Consensus view is, assuming that you have no issues with depression or auto immune problems, it’s worth trying to see if you can cope.

Interferons have had a bad press, imo because initial dosages too high (no period of adjustment) or just too high.

I think HU has a similar % of users who can’t tolerate it.

My pet theory is that users with higher levels of inflammation have greater side effects. Smoking appears to significantly reduce Peg efficacy.

Best wishes Paul

[Timjonze in reply to Paul123456]

Thanks Paul. Yes I will definitely consider it although I have had depression in the past which may be a red flag against it.

[Manouche in reply to Paul123456]

I agree with you Paul. My first shots were 90mcg and I never experienced any side effect, even without paracetamol. I now inject before breakfast as it gives me the energy for the whole day with the same power as a double Italian espresso 🙂

[Threelions]

Thanks for posting. A very positive read, just the ticket for this time of year👍

[mhos61]

Good morning Tim.

Thank you so much for highlighting ‘our’ rare blood cancer through your own personal and well told account. Definitely a bit of an emotional rollercoaster for you with regards to initial diagnosis, but if anything, that surely goes to show how complex MPNs can be!

Wishing you and your family a wonderful Xmas. I hope this year you manage to couple that wine with something more deserving.

🎄🍷🍷🍷

I have sent the link to my son and daughter.

Mary xx🤗

[Janehale]

A brilliant article ,very well written explaining well all the complexity of the disease we face

[JojoWonder]

Merry Christmas Tim. Great article!

It’s all a bit dramatic isn’t it?!?! You’ve been on an emotional rollercoaster.

I’m glad that you’re doing well now, long may it continue. Take care.

Joanne x x

[Jlah]

Great article. Sums up life as an inbetweener. Happy Christmas everyone. Jacquie x

[Ulidian]

Wonderful article. Hope the ET remains benign.

Happy Christmas to you and your family.

Stewart

[AndyT]

Great article Tim - thanks for sharing and have a good Christmas..!

[Ebot]

Congrats on the piece. Good to see MPNs get an airing. Have a great Christmas. And here’s to a very happy and healthy 2020! 🥂🥂

[socrates_8]

Hey Tim...

Well written expose... Naturally, I too can relate to the wisdom of much of what you have imparted...

We all have much life before us, however short or long that might prove to be... There can be an eternity in the life of a tear-drop or in the moment a smile grows upon one's face...

Happy Christmas buddy to you & yours...

Steve

(Sydney)

[Lifam]

Merry Christmas to you too. Thank you for sharing.❤️

[Clarke7]

Wonderful article Tim , profound, encouraging and full of life’s true meaning, Christmas is really about Life, a life that has come from death that all people in the midst of heartache, tragedy and all kinds of adversity may have a living hope , Behold I bring you good tidings of joy for unto you this day in the city of David , is born a savior who is Jesus Christ The Lord.

As a Pastor of 24 years now at the age of 68 I also was diagnosed with ET in May. All the emotions are very familiar, the tests, the BMB, as well as the many things I have read that may or not be my experience. My faith or should say God’s gift of faith has enabled me to focus upon all I can do to stay in the moment, being thankful for everyday and those who I love so much. To be able to see the lives of others that carry so much weight as an opportunity for me to enter their lives with the love of Jesus. I’ve seen many miracles that result from people being deeply and eternally impacted by His one solitary life which was humble, loving and giving His all for people like us.

I have found that staying fit by vigorously swimming daily , eating well, some supplements and most of all my daily and evening prayers for many that have an MPN, as well as praying for a cure helps me to not focus upon myself. And as you mentioned doing volunteer work. I visit those who are in Hospice and it again helps me to realize the gift of life is finite and fragile for the entire human race. All anybody truly has is the present moment. Yet the promise of eternal life for all who believe.

May you and yours experience the Joy of Christmas and for all of us on Healthunlocked a Happy, Healthy and Prosperous New Year.

Gods Peace;

Clarke

[Sweetlucy]

Excellent article.

At least you have family and friends. I went through this alone. Friends made all manner of excuses not to come with me for the bmb like hospitals scare me. Those people are out of my life now.

[doglover57]

What a beautiful, hopeful article. Thank you so much. I have myelofibrosis and feel so blessed to have had another Christmas with my kids and grandkids. God bless, Julie

[smith124]

Love your article - thank you for sharing! Blessings to you.💛

Was your final diagnosis PV? What have your platelets been running?

[stillkicking]

It is hard coming to terms with an MPN diagnosis, but it must be many times more difficult when this is reviewed and found to be a more serious form than first thought. Thank you for writing so honestly about the ups and downs you went through, it is a really great article and I suspect that many of us will identify with it. A very happy Christmas and New Year to you and your family!

Peter

[Poppy6060]

Thank you for doing such a good article hopefully it will make more people aware of our unusual MPN I have PV hope you had a good Christmas and wish you a healthy and happy new year keep positive best wishes Poppy

[MarybellM]

Great article - really well written and easy to empathise with you. Hope things are going well with you. Blessings of the Christmas season (We’re still only on Day 2 of the 12 days!!)

[Susana7]

Fantastic article! I read it before seeing your post here - wonderful to share your story and raise awareness for MPNs and MPN Voice. Merry Christmas to you and your family and hoping your bloods remain stable for a very long time. Susana x