Polycythemia

Hi Liz M  and a very warm welcome to the Macmillan Community but sorry to hear about your diagnosis. 

Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot. (I have a completely different type of blood cancer).

This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support.

The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated PV Cancer Support Group.

This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support. To connect in with the group please click on the link below…….

 MDS/MPN/ET/PV/myelofibrosis (MF)

……. and once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.

You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.

You can copy and paste the text from this post into your new post.

The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

Do get back to me if you need further help navigating the community.

• Thank you. Will do. Sorry didn't see polycythemia in any of the options of the type of cancer I had. 

No need to apologise….. the group title covers a number of rare types of blood cancer.

I'm Cathren. I'm new here as well. Can't find any support groups near me and PV is just so rare, not to mention the secondary issues some of us also have. I have Chronic Kidney Disease (stage 3), Asthma, Granulomatous Disease, and Epilepsy. All stemming from PV. I take heavy blood thinners that also cause me to get anemic at times and need Infusion therapy. I struggle with extreme fatigue too, but today I went out in the grass, barefoot, and just let me bones get the light. It's about all we can do, to stay positive. I'm a 42 year old former marathon runner and NCAA athlete who can no longer run, BUT because I was a runner, my life was saved. I presented with five DVTs during the hight of Covid 19. So, you see, the meds that are saving my life from keeping my blood from clotting are also making me extremely sick. My "Quality of Life" is hard to explain. But I choose hope, kindness, and to keep on sharing here and meeting new people  that share our burden.

Hi OvercomingCathren you may to join our dedicated…..

MDS/MPN/ET/PV/myelofibrosis (MF)

….. support group. 

This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.