Nottingham support meeting

[Shelly1960]

Hi all who is going to the meeting on weds 18th also maz can we ask at the meeting who has flu jabs because my health could be put at risk being around people who havent I know not all maggie's staff have flu jabs but according to my doctor flu jabs not only helps prevent flu but also stops viruses being cared by that person if that makes sense so just checking really all my carers family and friends have to have one to visit in winter months and even live in carer if gets a cold they have to leave

[Paul42]

Hi Shelley

I will be there all being well.

I have mine every year, always have, but thats because im asthmatic too.

Our immune systems are compromised with these conditions, my view on it is we can only try and protect ourselves to the best of our ability.

Maybe you will be able to go into more detail about what you mean, as i dont 100% follow what your asking. My view is if i have had my flu jab i wouldnt need to worry if anyone else has? They are only going to get the same protection i am from it, so if they pick up a strain of flu which im protected by with the flu jab i will be ok anyway? If they have a strain im not covered by the flu jab, then neither would they have been?

I also got my Pneumonia jab a couple of years back.

I get what you mean about people with colds etc, its difficult, my understanding is they are contagious even before symptoms appear, maybe this is something Angela could organise for us, some sort of session on how to protect ourselves against viruses et al.

Paul

[Shelly1960 in reply to Paul42]

What is your mpn mine is unclassified I have a problem with my white cells amd have mf this severely compromises my immune system. So even if I have a sore throat or a. Cold I have to I mediate ly go to the doctors coz my body can not fight infection anymore hope that helps

[Paul42 in reply to Shelly1960]

Hi

I have PV.

My lymphocyte count is below normal, which occurs in people with supressed immune systems (common in HIV patients etc).

I agree we have to try and stay well, last year I had problems with getting bug after bug and that was summer time.

All I was saying is the problem we have is colds are contagious before symptoms are present so its difficult for people to avoid us. Of course once they become symptomatic they can but the damage can be done by then.

Do you have the flu jab?

Paul

[Shelly1960 in reply to Paul42]

Doictor insists I have flu jab and that all my carers fruends and family also have flu jab to keep me safe and limit time in crude places so winter can be very isolating for me but need to stay healthy as I can

[AndyT]

Sorry won't be there this time but hope to get to the next meeting in the new year

[Splb3317]

Hi Shelly. I was interested to hear about the Nottingham meeting. I am from there and still have family there, but I've lived near Cardiff for many years. Does anyone know if there is an MPN group in the Bridgend or Cardiff area? Thanks everyone for the really helpful support and information on this site. Sandra

[Mazcd Partner MPNVoice in reply to Splb3317]

Hello Sandra, sorry but I don't know of any support groups in Wales at all, maybe you could ask at your hospital, the haematology nurse might know of some, or maybe you could talk to the team at your hospital about starting one up if there is enough interest. Best wishes, Maz

[Splb3317 in reply to Mazcd]

Thank you Maz. I will ask in the dermatology dept. when I'm there at the end of the month. I'll let you know if anything comes of it. Thank you for your help. Kind regards, Sandra

[Splb3317 in reply to Splb3317]

Hi again Maz. I should have checked the text of that post. Haemotology! of course. Not dermatology!

[Mazcd Partner MPNVoice in reply to Splb3317]

Hi Sandra, I did wonder if you had typed the wrong word. Maz

[Shelly1960 in reply to Splb3317]

Hi the meeting is held 3rd weds of t h e month 6pm to 8pm at maggie's centre in the grounds of the city hospital in nottingham I don't know about other meetings as this is the only one I have set up but maz will know and this is at present as far as I am away the only actual mpn support group at the moment but know others do meet up for coffee and a chat I hope this helps michelle

[Mazcd Partner MPNVoice]

Hello Shelly, we can of course ask for you, though I have to tell you that I haven't had a flu jab and never do, that's a personal choice/decision, and as far as I can tell at the moment I don't have a cold, and I will be there on Wed for the meeting. Looking forward to seeing you. Maz

[Shelly1960 in reply to Mazcd]

Thanks maz I will be there on weds but guess that's just to say bye to everyone till the spring as can't take the risk as my immune system low due to it being my white cells and immune system that my mpn effects look forward to seeing you weds michelle

[Mazcd Partner MPNVoice in reply to Shelly1960]

I do understand your concern, you must put your health first, it will be lovely to see you and be able to say farewell until the spring. Maz

[Hidden]

I would like to wish you all the best for Christmas and the New Year as I won't make the meeting on Wednesday - I have been unwell and still not really right so won't inflict anything upon any of you. Will hope to see everyone in the spring xxxx Caz

[Shelly1960]

Flu jab time again went to guys for mine on the trial anyone else on this at all