I am giving a short talk at the Manchester forum in a couple of weeks about what it is like to live with ET. This is something that scares me immensely but after attending a number of forums and hearing people talk I wanted to offer hope to the younger people diagnosed (hope I don’t offend anyone with that) I have noticed that there have been a number of younger people at the last couple I attended. Just wondered what sort of things people would want to know and what would be helpful? Planned to just talk about my experience and offer advice on how I manage it.
Thanks in advance.
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stephsmith
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I think it’s great you’re speaking. Public speaking is one of the great fears people have so good for you. As a person relatively new to MPN (ET in my case) and hydroxyurea id be interested in how you handled it emotionally in the early days of both diagnosis and treatment and then how you go forward. Of course if you have physical things you deal with as a result of either disease or treatment I’m sure that would be of interest. As I’m in Canada I won’t be at the forum, but way to go that you’re doing it!
Hi Stephsmith, I did a talk at the Dublin forum and just spoke about my own journey. Everyone will be very interested in what you have to say so please try not to worry too much. Telling how you overcame problems that came your way and how you're coping - after all that's what we all need to hear. Bear in mind everyone in the audience will understand what you talk about wheras family and friends may not. Good to bring a family member/friend with you. Good luck the forums are amazing and don't forget to let us know how you get on. It's very character building!!! Pat
I have done this a few times to cover Myelofibrosis, stem cell transplant and buddying. Your plan is good as people want to learn from your experience. It could also prompt/lead to questions in the ET breakout session afterwards. Well done for ‘putting it out there’ as some of my friends across the pond might say.
I have spoken at 3 forums ( I was diagnosed with PV 9 years ago and am 64) and this is my personal take on giving a talk.
I think people on the whole want an upbeat presentation. You could say that inthe beginning you were frightening/ wondering what the hell was going on/ looking for info and support whatever, but what they don’t want to hear is how ill and miserable and worried you feel now.
People newly diagnosed come to forums seeking info comfort and support I believe. They want to hope for a bright future - which in fact is what we all of us have.
We could have cancers that are a heck of a lot worse than ours. This isn’t a time for feeling sorry for ourselves and thinking “ why me”. I think why not me, and thank god I’m not that person over in that chair who has terminal leukaemia, lymphoma - and I see plenty of those sorts of folk at Christies in Manchester.
Personally I absolutely believe in self help. Lifestyle, positive mind, cup three quarters full whatever. An awful lot of research is being done into the effects of diet and exercise on all cancers at the moment including ours. Patients and family also like something that makes them smile.......do a bit of research, focus on the uplifting and the humourous as well as the info,
Having heard others speak I think making it personal is what matters. You’re there as an antidote to all the ‘medical’ info - the facts and figures. Warmth and humour go a long way to helping people relate to your story. And yes, being upbeat and positive while not hiding your anxieties and confusion along the way is always helpful. Good luck! You’ll be fantastic.
Hi stephsmith, , in a previous life I fronted alot of presentation type events and was largely following a script which was often very 'dry' in content and delivering it to try and keep folk who werent that interested was difficult. I did far better when I was allowed a free reign to put some key points down as a reminder and talk off the cuff.
But you have the advantage in that your audience will be hanging on your every word so if you can my advice would be to cover your main points but try and go with the flow a bit and either leave questions to the end to maybe manage your time better or make it interactive. Either way I'm sure the attendees will be most appreciative of you sharing your experience.
Hi , This sounds interesting, but unfortunately I won't be able to attend, would it be recorded for down loading ? Ive had ET JAK2+ diagnosed a few years ago now and just been put on Hydroxyurea . I have been looking at positive comments on this forum as negativity just depresses you and bring you down further. But would be interested on how others and yourself cope with things. Trying to explain this to my friend the other day , she had never heard of it and it just sounded as I was reeling off a list of ailments.. of which seemed many. Don't think she really understood though she tried to be sympathetic, which was nice.
Anyway if it does get recorded could you put a link, if you are able or information where to go , on this forum.
Not sure about it being recorded sorry. Thank you everyone for your comments. I was just going to go down the route that everyone has suggested anyway! Happy to answer any questions on here if anyone would want that xx
Well done. I lecture at university for a living and it took me a long time to get used to speaking to 100+ students, even when I knew I had more knowledge on the subject. It can be nerve wracking but in this context you are going to be so welcome for sharing your own experiences and putting those newly diagnosed at ease.
By using this forum, I was able to recognise that following my diagnosis, EVERYTHING I felt and EVERYTHING I went through both mentally and physically was the same as other sufferers. The recognition that these were emotions and phases that all were going through at some point made so much difference to the way I am accepting my situation that if I had been able to hear those discussed at a conference it would have made me relax into the new normal..
Therefore, I would say, just by letting people know we are all human and frightened, angry, agitated, fatigued, hurting etc. because this is the new normal, you would be helping them immensely.
Hi can you give me details of venue, date and time please? I also have PV and jack + so would like to attend. Am back in UK 2 October so hopefully be there in time. Good luck!!
I have PV and am going to the Manchester forum where my husband is giving a short talk on his role as carer. we'll be arriving early to check out the room , acoustics and IT ( we're both retired university lecturers and old habits of checking out a room die hard!) - do have a word as soon as you arrive ( Fiona and Stuart). As others have said, these forums are friendly, informative and supportive and meeting up with others who have MPNs reduces the isolation significantly. If you've never given a talk before, please don't worry - this would be the most friendly supportive environment you could wish for .My only tip is practise your talk a few times first to time it - and then reduce it by half - you will find you will speak more slowly in front of an audience and may expand on what you intended to say resulting in missing out something important because you run out of time.
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