How many on the forum in the west midlands?

[Tico]

Hi,all mpn'ers,just came across an old post about how a support group was set up,i was wondering if anyone knows if their is one close to me? I live in west bromwich but originally from tipton(the black country). I am a stones throw from birmingham! I think i've seen a few posts from brummies on this wonderful site. Do anyone know of a nearby support group or maybe maz does?

[Graham7694]

Hello Tico - I am in Worcester but work in West Bromwich. My office is down by the railway station off Bromford Road.

[Tico in reply to Graham7694]

Hi Graham,hope you are doing well after your recent diagnosis.well you live in beautiful worcester,takes me back when i was "knee high to a grasshopper" fruit picking guzgogs (gooseberries) down there! Know the area in west brom your talking about. I live up the road virtually! Small world. Have you attended any forums? Atb tina🤗

[Graham7694 in reply to Tico]

Not attended any forums as of yet but have put my name down for the one in Nottingham in October as that is the nearest one to me. It will be nice to meet some people with MF and maybe put faces to names 😀

[Tico in reply to Graham7694]

Agree so much graham,hopefully there will be one in birmingham in the near future. You take care.tina🤗

[Wyebird]

Hi Tico, I attended a Birmingham forum last year. It was set in a beautifully renovated building. The buffet was fantastic and the speakers were really wonderful. It was intermit. Well worth the trip from Yorkshire. Maybe in the near future a forum will be held there again.

[Tico in reply to Wyebird]

Hi wyebird. Don't think there is going to be one in birmingham this year,such a shame really,would have loved to attended one. I'm sure everyone who attends feels less "isolated" when being around penple with similar rare conditions. Atb to you wyebird.🤗tina

[Nickthedevil]

Hi Tico I live in Kinver, so not far from you. I’m not aware of a local support group. Like Wyebird, I also attended the forum in Birmingham last year. It was excellent, and great to meet fellow mpn sufferers. Karen

[Tico in reply to Nickthedevil]

Hi karen, is kinver near kidderminster? I treated my daughter & family to a christmas visit there on the magical seven valley railway so my grandson could see santa & travel on the steam train. Charlie is now obsessed with trains,even when he is on the local tram it's choo,choo! Atb tina🤗

[Nickthedevil in reply to Tico]

Hi Tina Kinver is about 4 miles from Kidderminster. Severn Valley Railway is fantastic isn’t it? My grandson loves it too, though my granddaughter cried the whole time she was on it! 😂

[Wyebird in reply to Nickthedevil]

Lol hi nickybedevil

[Skye333]

Hi Tico I am Halifax West Yorkshire and I have thinking of doing the same for this area.. it will interesting to who lives in our areas who are also interested

Janet x

[Tico in reply to Skye333]

Hi janet, i was only wondering if there was a support group near me,i certainly could not set one up! I haven't got time to do much lately & the coming months are going be really hectic. Got to see "Dr blood"haemo, tomorrow, stroke consultant following day,which incedentally both clash with my daughters appointments at hospital but at different hospitals & times, so having to juggle a bit. My daughter is scheduled to give birth by casarean section next week(13th) & i'm going to be looking after my grandson because of complications the new baby is going to be born with & how long she will remain in hospital. But your idea is a good one & i would look further into it,it would offer people with a rare & complicated condition support. Alas,if there was one near me i would be more of a fair weather friend. Atb janet & i hope you look into it.x tina🤗

[Skye333 in reply to Tico]

I didn’t really want to set one I haven’t a clue how to do something like that but I would help if someone else wanted to do it.

Good luck with all the appointments tomorrow I hope they all turn out well.

Aww a baby coming, there’s nothing like a baby to take your mind off things

Janet x

[Tico in reply to Skye333]

Your so right janet about a baby arriving! Regarding setting a support group up near you, why don't you email maz? I am like you regarding organizing things, i could not organize the proverbial **** up in a brewery! If you pardon my french! By the way janet which mpn do you have? Wishing you well. Atb, tina.🤗

[Skye333 in reply to Tico]

Hahaha that’s me to a T. I hate organising things. I have PMF live in Halifax and go to Leeds Cancer hospital. I suspect there might be a support group there. I will ask next week when I go.

Janet x

[Tico in reply to Skye333]

I will do the same tomorrow janet when i go to mine too. Let me know how you get on. Wishing you well,tina.🤗

[AlyW]

Morning all

I too went to the Birmingham forum as I live locally- the information was excellent but meeting others made the biggest difference to how I felt about having ET. I came away with a more positive attitude and also discovered this amazing forum! I do hope that there will be another forum in the West Midlands soon.

Aly

[Tico in reply to AlyW]

Hi Aly, could not agree more with you, i've been diagnosed a long time,etjak2 but only found this wonderful site recently myself. Being so rare i've only met 2 with et & 1 with pv & that was at the hospital. I will never forget the 1 just diagnosed with pv when she had been told that on this visit she would be more than likely be put on hxdrea,the fear was plain to see,thats why it's such a good job maz & the team do in running this site & organising the forums in different parts of the country while lets not forget she also having et herself.well done maz! Atb Aly.tina🤗

[Mazcd Partner MPNVoice in reply to Tico]

Tina, thank you, you are very kind, I am just glad to be able to help when I can. Maz x x

[Norman45]

I live on the other side of Birmingham in Berkswell and also attended the last Birmingham forum. Very useful, especially meeting other fellow post ET MF sufferers.

I think MPNs are becoming more common than we think; in fact a neighbour of mine also has post PV MF and was diagnosed thirty years ago. Perhaps the medics are getting better at diagnosing the disease.

We’re both on Ruxolitinib which seems to be keeping our bloods stable but we both suffer with heavy fatigue.

[Tico in reply to Norman45]

Hi Norman, i think you right about it becoming more common, when i was diagnosed at 38, haemo told me it was "classed as an older persons'blood disorder" but now people seem to be getting younger, i think your right about dr's getting better about diagnosing it earlier but we are left waiting for that magical breakthrough of cause of them & one day a total cure! Atb to you norman, wishing you & your neighbour well, tina🤗

[Tico in reply to Norman45]

By the way norman, how old were you when you was diagnosed,tina🤗

[Norman45 in reply to Tico]

I was 66 when diagnosed with ET in 2011 but I believe I had had it for at least 3/4 years before. Kept going to my GP complaining about fatigue and loss of my mojo but he fobbed me off saying it could be post viral and then finally, when I kept going, he said it was depression!

While I was certainly depressed about his attitude there was no way I had depression.

Just returned from my eight week hospital blood test and yet again Ruxolitinib is working its magic with stable counts on all measures.

That’s all I can hope for until we get the big breakthrough we all need to give a lasting cure.

[flog in reply to Norman45]

Hi Norman

You don’t say how old you are

I was 38 when I was diagnosed with ET now 45 and have now been told I have MF

On no meds as yet as am waiting for a bone marrow biopsy

So good to read all these post

Keep well

[Tico]

Hi maz, do you know of any informal gatherings, ie, coffee & biscuits for people with mpn's meet in the Sandwell and west birmingham hospitals nhs trust? Thank you for the wonderful job you & the team do on this site. Kind regards.tina🤗

[Mazcd Partner MPNVoice in reply to Tico]

HI Tina, I am afraid that I don't know of any groups, the only one I do know of which meets every month is in Nottingham, so maybe a bit far to travel. We are hoping to hold another forum in Birmingham next year, I am afraid it just wasn't possible this year due to dates etc. Maybe all the people on here could arrange to meet up somewhere in Birmingham one weekend for a coffee and chat, chose a central location in a coffee shop or pub or something and all get together and chat etc. Maz

[AlyW]

Hi all

It would appear that there are indeed enough of us in this area to have a meet up in Birmingham- let's get organised.

Aly

[Tico in reply to AlyW]

Morning aly, did you see reply off maz & her suggestion? A sort of informal meet in a central location in birmingham. If their is enough people & we can all agree a time & place,that would be good. I am getting ready to see dr blood & the vampires (haemo team) later this morning,then if theirs the interest, we can fingers crossed set it up. Atb aly.tina🤗

[linphy]

Hi Tico, I live in Worcester

Linda

[Hidden]

Hi I'm new to the group, living in Tipton 🙂

[Tico in reply to Hidden]

Just saw your reply from my post from 5 years ago. I used to live in Tipton, i'm now just up the road from you in West Bromwich. Which hospital do you attend?

[Hidden]

Hi, I didn't realise the post an old one, if I need to I go to hospital I go to Sandwell. Luckily it's not very often x

[Tico in reply to Hidden]

What Mpn do you have?