Hi
Are many of you going to Edinburgh next week?
Very nervous newlyish diagnosed here! I'm worrying that i'll end up
in tears listening to others stories etc..
Read some articles when couldn't sleep last night and its made me feel terrible.. not much info 10years post diagnosis, and that scares the hell outa me!
Tara x
I, like you, have been recently diagnosed and think it's the unknown which is scary although I have read in this forum some having mpn for a long long time and still going strong!! I am going to the forum to find out more about the condition and the work they are doing, remember in 10 years time the treatment and medications into this condition will be far advanced than today and you never know there may even be a cure. Stay positive I'll see you at the forum.
Eoin
Hi Tara,
I'm not going to Edinburgh, however, I'm sure it will be a really positive experience for you.
I have ET too and understand your fears. There is clearly a lot to take in when first diagnosed. Often we can make the mistake of overloading with information in our quest for knowledge of our condition. Importantly, some of this information will be reliable and some will not. This in turn can create anxiety.
Are the articles that have made you 'feel terrible' from a reliable source? Even if they are - it doesn't mean what has worried you in these articles will happen to you. Likewise, other people's stories are specific to them and doesn't mean that you will follow the same path. Out of all the MPNs, ET has the most favourable outcome when monitored and treated accordingly.
You could ask Maz for a buddy to support you.
Enjoy your day in Edinburgh.
Mary x
Hi folks, see you at Edinburgh too. Honestly there are folks on this forum who have had their ET or PV for a long time. Now that you are diagnosed the medics will monitor your blood counts which means if there were any changes, they would be picked up really early.
I was diagnosed in 2012 with PV and remember being terrified and confused, my world was turned upside down. The best things I did were to join this forum where I got so much support from people who I count as my friends, but many of whom I had not even met. They picked me up, dusted me off and taught be to be positive about my disease. I learned to have some control over it and not vice versa. Another good thing I did was to attend a forum in London, welcomed by Maz and I met friends from the forum. I was so impressed by the haematologists there who had given up their time free of charge and came from a variety of countries. They were all very friendly and approachable. There were no airs and graces, despite what they had achieved in their profession. There is usually a group for family so your family can meet others with relatives with ET, PV , my husband found this very worthwhile.
Have a look at the MPN Voice website where you will find trustworthy information and as Mary has said, Maz can help by getting questions answered or getting a buddy.
Try and eat healthy, drink plenty of fluid, rest when you need too but exercise as well. Anytime you go to see your haematologist, write your questions down before you go, as it's easy to be anxious and forget to ask them.
Please don't worry about the forum, everyone is so friendly and you will get a lot of info from the "horses mouth" to help you cope with your disease. Looking forward to meeting you there . Kindest regards Aime xx😺😺
Hi Tara
And what's wrong with crying if you feel sad? At an MPN event you can cry with someone who understands. I'll be at the London event, and if I feel like crying, I will. And then I'll get on with gently enjoying as much of life as I can.
I was diagnosed with MF , and a median prognosis of about 3 yrs, in January this year. I have a lot to cry about, and I do. I'm likely to miss most of my good retirement years, and seeing grandchildren. But I'll also probably miss a possible decline into dementia, and all the horrors that go with that .
I go on pottery courses and I garden and I get angry with my husband and make it up with him - and having this forum makes it all easier to bear.
Not sure if there's an emoji for - cry all you want- or indeed if its possible to send you an e - tissue - but if there were, I'd send you both. And an e- hug too.
Hi Rachel, I was given 2 years from last April. I asked the question and my haem told me!! I don't feel any different am coping really well and its hard to to believe!! I constantly troll the internet for 'potential cures' and ask my haem when I see her to see if any may help. I was advised this year will be my better year then not so good from then on. You're the only post I've read that has brought this subject up. It's a toughy that's for sure. I've not mentioned any time scale to my adult children who think I'm going to live forever!!!!! I gently remind them that my condition is serious but to actually say I've 2 years to them is unbearable. We're all having Xmas together this year and nothing will be said until it's unavoidable. We are troupers aren't we???? I look after my gr daughter take her to and from school my other gr children live in the UK so only see them as and when. I'm still hopeful something will turn up as I'm sure you are. You seem to be a very positive person. Good luck to you and anyone else who may have been given potential time scales.
All the very best.
Pat
Hi Rachel, I am coming to the London 'Living with M P Ns'...hope to meet you there,will be my first forum....hope there will be others we 'chat 'to.Keep well until then,I am horrified at your prognosis,I am P V my consultant said to me 10 years,I was 70 then,now 77,try not to think about it,medicine improves all the time,Best to you Sally
See you there. Should be fun.
Thank you everyone for your kind words and support.. Was having a bad day yesterday. I'm 6 weeks post op from gynae surgery and with that and the ET it all came crashing down!
This forum is amazing tho and i'm
hoping Edinburgh will help put things into perspective and give me the information and knowledge i've not received from my local haematologist.
Again thank you and looking forward to Edinburgh.
Tara x
Catching the overnight sleeper from Watford with Lesley, my better half, to join you. See you there.
Chris
Hi there! My husband has PV and we are both going to the Edinburgh forum. I'll look out for you! Going to the forum last year (Inverness) was a turning point for us in our dealing with this illness. Previously we had heard scary things on the Internet about PV but this forum reassured us and helped us to put things into perspective. So, the illness can be controlled and your aim is to live as normal a life as possible. What more does anyone aim for, really.....? Of course there are good and bad days (again normal for anyone) but on the whole the key is to have a positive mindset. You will see that at the forum - people who have had MPNs for years - looking well and happy! See you there! Marybell and Angus. X
Hi Tara, don't worry about being in tears at the forum, we will all be there to support you, the forums are very friendly and relaxed, our aim is to make you and everyone there, feel supported and comforted, so don't be anxious about coming along. And it's generally me who cries if all the cake is eaten before I can stash some under the table!!! Maz x
Hello Tara
I'll be at the forum. I was diagnosed with MF in January this year, although had ET for around 7 years before that. It is indeed scary. I've been given a median of 10 years and haven't been able to bring myself to tell my children (teenage and early 20s) anything about my illness. But I'd like to echo what Eoin says. Science is moving rapidly and I do believe there is cause for optimism. I look forward to meeting everyone there.
Paula
What a great London forum
How to start a forum in my are.
I’m still new to this forum
Newcaslte Patient Forum?
MPD London Forum
