I was diagnosed with MF early in 2017, and found this group[ almost immediately. I've posted on it, and replied to posts (especially from newcomers, who were as baffled and frightened as I had been. ) I'd really like to do a patient experience talk at the upcoming Oxford Forum on the 24th April. I have myelofibrosis, and I'm well enough to do it now, and I am being treated at Oxford so I know the set up. I may not be well enough to do one at a later event. My husband and son (both of whom have been having a hard time accepting that their active, lively wife/ mother now has a limited life expectancy) would also find it helpful, I think, to see and hear other people's responses to my experiences with myelofibrosis. They have agreed to come to the Forum.
I gather from Maz that the organizers are still considering a couple of other offers. So I'm hoping that they, after consideration, decide that this slot is one for me.
Rachel (in hope)
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Rachelthepotter
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Wishing you the best of luck Rachel, I’ll keep my fingers crossed for you.
I thought you were part of this forum long before me (2016). You have an exceptional knowledge of your condition/treatments in this short time frame! You would undoubtedly be an asset to the organisers at the Oxford forum.
I also thought the same as mary and agree about your knowledge and you would definietly be an asset to have and sound like you have the confidence to speak to an audience. Here's hoping rachel that you do get a chance to give a talk and will keep my 🤞 for you. Best wishes,tina,x🤗
Thanks, Tina I used to talk to groups in various former jobs, and I gave a user - experience talk to the imaging department of my local hospital: it did seem to help.
Thanks, Steve. Will definitely do a "how it went" piece, and anyway, what I get from the forum generally. Should be fun. In my working life I did a lot of speaking to audiences in various roles, and the feeling that can happen when a speaker and the audience are totally at one is memorable.
And I'd like my son, in particular, to see me in action.
I'm now being treated at Oxford, so it'll be a chance to say thank you, too, to some of the people there who help me. I did my undergraduate degree at Oxford so the place has a lot of resonance for me.
How are things with you? Did I say that I'd lived in Sydney myself during the 1970's? I did some post grad work at the University of New South Wales (Kenso Tech to its friends). It then had a very highly rated" Faculty of Wool and Pastoral Technology." Sheep farming, in other words. Hmm I thought. Things are different here. it also had a department which the students unkindly called Psychoceramics -or the study of cracked pots. The professors called it Applied Psychology .
I have very fond memories of the Aussie sense of humour, and their ability to just get things done - at a time when us Brits were prone to faff around too much.
Yes, there is a special type of Ozzie humour is there not? Cracked pots is priceless too...
Rachel, I have long admired those that can provide an entertaining piece from behind the lectern. Sadly, I was not so gifted... So ... I simply enjoy those who can!
Sounds like you are an old-hand at such things... Bravo Rachel, maybe you will also offer me some advice in due course with a couple of other ideas that I have burning in the back blocks for the moment...(?)
Anyways, I will love to hear your feedback after your Oxford affair. Will you be recording it Rachel?
Perhaps, you can play it for all to see? Just a thought.
I am sure that you will be brilliant. Really well done!
University of NSW, is still considered on of the best in the country... Not sure how it might compare w/ the history and glamour that surrounds the history that is Oxford, however, you are correct when it comes to taking action Rachel... We do simply just get on with it!
Good luck. I gave a patient talk at the patient day in London 2017. I found it difficult to know at what level to pitch it, not to bore the veterans and not to scare the newbies. One thing I did learn was how quickly on my journey I became interested in the MPN research. I found the whole process very rewarding.
Greetings from our holiday, now on Hamilton Island in Australia. I’d love to hear about your patient experience and as you know I am signed up to the Oxford forum, so I do hope you are given the chance to speak. Looking forward to meeting you. Tessa
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