I’m so pleased that there is a forum like this!
I’m 55 and was diagnosed with ET in January. I live in Kent, England with my family. I’m finding it all a bit overwhelming to be honest as mostly looked after myself and because it’s under the ‘cancer umbrella’ 😐 I’m under 2 hospitals and both have been really helpful so far.
Thanks for reading 😊
Mich
Welcome to the forum Mich I joined here about a year ago and have found it a fount of information. I am 64 years young and was diagnosed with PV 14 years ago. I am living in Kildare on Ireland with my family.
.Kind Regards
Garry
Thank you. 😊
Hi and welcome to the group. It is a bit overwhelming at first, but there's no need to worry too much. We've all been there. Ask as many questions as you like, no matter how mad. Someone will always reply and hopefully put your mind at rest.
I have PV but was originally diagnosed with ET 3 years ago. It can be a scary journey and everyone is different. I have found this forum to be a brilliant source of information and advice. Once again welcome to our little gang and happy Easter. ☺
Hi Mich, welcome. I am the same age as you, live in Hertfordshire and have PV (diagnosed in 2014). I have been on Pegasys interferon for 3.5 years, which is fortunately controlling the disease very well: all my blood counts have normalised and I lead a normal very busy life with full time work and teenage sons. Being under the cancer umbrella may be scary at first but it has its benefits: it means more funds for research, and a higher profile for our diseases, free meds for you on the NHS, and if you have critical illness insurance covering blood cancers you can make a claim. I am glad you have been happy with your care. I have also received excellent care throughout, and think our NHS haematology services are fantastic, despite all the challenges they are currently facing. All the best to you. Susana x
Hello Mich 10 I live in Kent too and have been diagnosed for 10 years now. I come under the K&C hospital and have no problems with the care. I seem to be very lucky because I don't have many symptoms and I can tolerate the treatment pretty well.
Sally
Hello! Where abouts are you in Kent? I’m in Chatham and attend Medway Hospital and Kings in London. I’m so pleased you are being looked after and not many symptoms on the meds x
I am in Sittingbourne.
Oh that’s not far! 👍
Welcome! Even what seem to be the embarrassIngly simple questions are asked and then answered. Finding out that those questions are not embarrassingly stupid but are very relevant is a godsend. I love this site.
Welcome from an Et Calr diagnosed age 60 in Oct 2015.
Thank you!
Hi
Welcome to the forum. I mentioned a few months ago that I was facing having a knee arthroscopy and was worried about the op and having ET jak2+. This was diagnosed 2 years ago. Someone kindly reassured me that I should go ahead and I did. I am now hoping to be discharged next week and then get back on the golf course. I am 76 and do get tired and have joint pain but life hasn't ended because I have a MPNS. All the best and try and keep positive.
Hello Mich, welcome to our forum. It can be very overwhelming when you are first diagnosed, and quite scary at times, we all understand how you are feeling, and hopefully now you have found this forum it will help you. If you haven't looked at our website at mpnvoice.org.uk I would suggest that you do, there is lots of very good information there which might help you and your family. Any questions you have, please ask. Best wishes, Maz
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