I am new to group am in Nottingham i would like to meet others so me and my daughter can get more information from other patients

Who would like to meet for coffee and a chat please pm me i am new to group and would like to meet others for more information and tips how to cope my daughter and need to meet other patients to talk my daughter is seventeen now I was diagnosed in 2011 but have found it hard to find information about my condition and the doctors seen to know little and the specialist are so busy you are in and out has anyone else found this look forward to hearing from you and thank you in anticipation michelle my daughter is Victoria xx

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34 Replies

  • Hi there,

    I'm a Nottingham lass but I don't live there any more. You don't say what your condition is, if it's the same as mine, I have myelofibrosis, we could keep in touch whilst you're looking foe true locals.


  • Hi, that's awful, I have ET, diagnosed 2012 and live in Edinburgh, the care and information I receive is faultless

    and my platelet count is not that high around 550 to 600. My consultant specialises in this field. I have found Macmillan website quite good for my condition. Hope you find your support.

  • there seems little information down here but they do look after us at the hospital but everyone so busy to answer questions doctor really doesn't know etc and no group here but several people have contacted me so maybe can meet locL PEOPLE AND WHO KNOWS MAYBE WE CAN START OUR OWN GROUPoops caps sorry wasn't shouting thank you for contacting me michelle

  • ty tigger any help is gratefully accepted at the present time

  • that would be lovely thank you I am on fb and also my email is lauriewaddo@Hotmail.com and thank you so much for replying michelle

  • I am inclassified but would like to stay in touch

  • hi colleen I hope you well and would love to chat mmichelle

  • Ty

  • Shelly,I live in Derbyshire but on the Notts/derby border and work in Nottingham. I was diagnosed with PV in 2009. From what I gleaned from your email you and I may be of similar age and if I can help then let me know. Just knowing there is someone else who can understand what we are going through can help. I see a consultant at City Hospital and there are is a generic group there but I have not used it as it is not specific to MPDs

  • that would be wonderful if you want to mee for coffee please contact me be lovely to talk to someone else michelle

  • hoping to start a group for us with the help of Maggies and happy to meet anyone to share experiences and hopefully understand condition

  • I have contacted you but don't know if you got my message as no reply

  • Hi ,My husband Keith was diagnosed with PV 7 years ago when he was 50 and our daughter was 16.We live in Worksop.Very willing to meet up and share our experiences of the disease and how we have found out more about the disease .

  • that would be wonderful my email is lauriewaddo@Hotmail.com and I am on fb it would be great to meet and to find out information and to know about your experiences michelle

  • if you want to meet at maggies please email me

  • sorry to hear you are poorly at the momeny keith and hope to meet once you had your ops and feeling better michelle

  • Hi I live in Cotgrave. I am 57 and was diagnosed with PV in Noveber 2011. I had been ill for some time and was diagnosed when collapsed at work. I had had a number of silent strokes. I have not been well since and suffer from chronic fatigue. I go to city hospital every 6-8 weeks. I went to the generic cancer group at Maggies on the city hospital site but it did not reflect my illness. I would be glad to meet others in Nottingham to share experiences.

  • maybe if there are a few of us we could go to maggies and maybe they would set a group specific I go to the city 6 monthly at the moment maybe we could meet up when you next go as I am not far from the city hospital I see dr bynes there who do you see so pleased ypou contacted me michelle

  • my email is lauriewaddo@Hotmail.com and I am on fb I look forward to hearing from you my telephone number is 01159673843 michelle

  • look forward to meeting you and thank you for emailing me

  • looking forward to meeting up at the beginning of nov at maggies

  • thank you for all that have contacted me and happy to meet all of you my contact details are lauriewaddo@Hotmail.com I am on fb and home number is 01159673843 thank you michelle

  • would anyone here be interested in a group meeting

  • Hi

    I would but unable to attend mon-fri during working hours


  • hi paul I am trying to arrange one in the evening but if this isn't possible I am still happy to meet you to chat

  • have pmed you paul but no reply thank you I have sent you my email

  • paul if you wish to meet one evening for coffee maybe at costa in Arnold am happy to do that just email me

  • Hi

    sorry not been back in touch, i couldnt get on for a couple of days and full of lurgy.

    Have you had many say they wish to meet up?


  • am meeting heather on the 7th and Lesley this week

  • New group meets 21st Jan weds 2015 at Maggie city h I Spital nottingham

  • Thank you all for your help and particularly Ian heather John and Chris found out today I have fibrosis x

  • up date we had our first meeting with a great turn out it was great to chat to others with mpns even though I was the only unclassified I still learnt from others and didn't feel quite as alone as when I first put on this post also mpn voice are running a forum in Nottingham on 12th sept looking forward to the details of the forum so things moving on well michelle

  • Who would like to meet fir coffee

  • Hi i am in nottingham. I can promise to meet but then if it is a bad day i cannot leave the house. pathetic really

    M x

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