MPN Voice
3,097 members4,702 posts

Manchester

Having being diagnosed with ET Jak 2 positive last August and only now come to terms with this uphill challenge, I would like to know if there is a support group in Manchester or in the North West, I had been on Hydroxycarbamide but due to mouth and gum problems I am now off it. Awaiting my next appointment to find alternative med. This is a wonderful site and many thanks to everyone. Maggie

24 Replies
oldestnewest

Sorry to hear you had to come off your meds. I hope your mouth and gums are recovering and that your next treatment will agree with you.

I attend Maggies here, which is a cancer support centre in the hosptial grounds. They hold monthly get togethers for sufferers of blood disorders. Maybe worth asking your Consultant or your specialist nurse if you have one, I'm sure they would know of anything.

Good luck. Grace.

Reply

Hi, where is the group?

Reply

Sorry Dora I didn't say did I? The group I attend meets at Aberdeen Royal Infirmary.

Reply

Grace, thank you so much for getting back to me, its always reassuring to know, we all have each other for that support and guidance. I v had this bad reaction for about a month and wasnt getting any better so I got in touch with the haemotologist. You mention Maggies I presume that is at the Christie Hosp

Many thanks

Reply

Sorry Maggie, I must be clearer in my messages, I am from Aberdeenshire Scotland and the meetings I attend are held at Aberdeen Royal Infirmary. A bit far away for you I think. I'm sure there must be some kind of support group more local to you, just keep asking around but your consultant would surely know.

Reply

Oh gosh thats almost funny, no I wont be travelling to Aberdeen, but am sure its a great city, anyway than you for your help and I will check with the consultant and see if he knows .... Take care

1 like
Reply

Hi Maggie and welcome to the forum.

I can’t answer your question in regards to support groups in the North West. I hope someone else can help.

We are all different in how we respond to our diagnosis. For me, this forum was immensely supportive at this time. I have been educated so much by both the literature available and the posts from MPN patients.

Another thing you could consider is a ‘buddy.’ This can be set up with Maz the forum administrator. A buddy will have the same MPN as you and offers extra support.

I’m sorry to hear of your adverse reaction to hydrea. It is not suitable for everyone. I’m sure your haematologist will find a suitable alternative.

Mary x

Reply

Mary, thank you, I know this website is wonderful and so happy to have found it. I have an apointment in afew weeks, hydrea should be well out of my system by then and hope my platelets dont shoot too high. I will get in touch with Maz, I think I have her email.

I wish you well and thanks

2 likes
Reply

Hi Maggie

Welcome to our club😉 not that anyone volunteers to join. Anyway when chatting to Maz don’t forget about the annual patient forums she organises, great way to meet people and very informative. I am a fellow ET patient 57 yr old dx in 2011, although not JAK2. I have made a couple of friends (and so support) from online, one in Southport and one in Tenby. I live on the Wirral, am happy to meet up somewhere convenient if you ever want just a chat. Janet

2 likes
Reply

Dear Janet, thank you for info for forums, everybody is so kind and supportive. Yes it would be lovely to meet up, perhaps when the weather is a bit more kind and cheerful. I could get the train to Lime st.... stay well

Reply

HI Maggie, ask at the Christie if they have any support groups, they may have. We will be holding a forum in Manchester again this year, we usually have them in the Christie, but we are going to hold it in The Royal Salford Hospital, just arranging the date, once I have the details I will let everyone know. You can email me about having a buddy at maz.cd@mpnvoice.org.uk. Best wishes, Maz

2 likes
Reply

Maz thank you for your help and getting in touch, I so appreciate it.

Reply

There is a Facebook group called MPN Family UK and some of the members from around the Bolton area have started to arrange a coffee morning to get together. The next one is Wednesday18th April at Costa coffee on Middlebrook BL6 6JA at midday. It's a very friendly group so please join

2 likes
Reply

Thats really good to know, I will check it out and see where it will leadme. Thank you Alastair and am positive it is a friendly group as everyone on this site is so supportive and helpful,

Reply

Hi Maggie

Not sure if there are any support groups in Manchester but I’m ET JAK2+ and living in the Urmston area and happy to meet for a chat

1 like
Reply

Gosh that would be great, are you in Altrincham at any time, I m not driving at the moment and thats the most convenient for me........ or Sale... Thanks

Reply

Hi Maggie

Sure I’m happy to meet. Sale is better for me coming from Urmston and I don’t drive. Could meet in Costa coffee if you’re familiar with that in Sale? Which days are good for you?

Kira

Reply

Hi Kira, lovely, yes , except Monday, will get back to you after Easter, have a wonderful Easter

Reply

We have a Haematology Support Group at Maggie's by The Christie Hospital. We meet every 2 months and the next meeting is 21st May. if you need someone to talk to you can drop into Maggie's for a chat.

1 like
Reply

Ohh brilliant, thankyou, what time do you meet and would I need to register or is this a drop in.. Maggie

Reply

The next Haematology Group meeting is 1 -2.30 at Maggie's on the 21st May. It's organized by Leukaemia Care and if you contact them they'll put you on the email list for meetings, but you could just turn up on the day. Maggie's Cancer Support Drop in is 9.00 - 16.45 Monday to Friday .Leukaemia Care number is 08088 010 444 or email support@leukaemiacare.org.uk Maggie's is maggiescentres.org/our-cent... Hope that helps.

1 like
Reply

Thanks again, in my diary....

Reply
1 like
Reply

Don't seem to be able to paste the full address! But you can google it!

1 like
Reply

You may also like...