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

[Shelly1960]

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

[SusanFletch]

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.

Caroleen

[Tigger59 in reply to SusanFletch]

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.

[Shelly1960 in reply to Tigger59]

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

[Shelly1960 in reply to Tigger59]

ty tigger any help is gratefully accepted at the present time

[Shelly1960 in reply to SusanFletch]

that would be lovely thank you I am on fb and also my email is [e-mail] and thank you so much for replying michelle

[Shelly1960 in reply to SusanFletch]

I am inclassified but would like to stay in touch

[Shelly1960 in reply to SusanFletch]

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

[Shelly1960 in reply to SusanFletch]

Ty

[Aquaphobe]

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

[Shelly1960 in reply to Aquaphobe]

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

[Shelly1960 in reply to Aquaphobe]

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

[Shelly1960 in reply to Aquaphobe]

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

[KeithGW]

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 .

[Shelly1960 in reply to KeithGW]

that would be wonderful my email is [e-mail] and I am on fb it would be great to meet and to find out information and to know about your experiences michelle

[Shelly1960 in reply to KeithGW]

if you want to meet at maggies please email me

[Shelly1960 in reply to KeithGW]

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

[geordie]

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.

[Shelly1960 in reply to geordie]

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

[Shelly1960 in reply to Shelly1960]

my email is [e-mail] and I am on fb I look forward to hearing from you my telephone number is 01159673843 michelle

[Shelly1960 in reply to geordie]

look forward to meeting you and thank you for emailing me

[Shelly1960 in reply to geordie]

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

[Shelly1960]

thank you for all that have contacted me and happy to meet all of you my contact details are [e-mail] I am on fb and home number is 01159673843 thank you michelle

[Shelly1960]

would anyone here be interested in a group meeting

[Paul42 in reply to Shelly1960]

Hi

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

Paul

[Shelly1960 in reply to Paul42]

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

[Shelly1960 in reply to Paul42]

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

[Shelly1960 in reply to Paul42]

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

[Paul42 in reply to Shelly1960]

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?

Paul

[Shelly1960 in reply to Paul42]

am meeting heather on the 7th and Lesley this week

[Shelly1960]

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

[Shelly1960]

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

[Shelly1960]

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

[Shelly1960]

Who would like to meet fir coffee

[Hidden]

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