Hi everyone, Throughout 2023 I noticed some changes to my health and I was diagnosed with Polycythaemia vera (PV) last November after having a TIA the previous month. On Hydroxycarbamide daily and other tablets for high blood pressure. Having a few issues with fatigue, going upstairs is like climbing a mountain just constantly having no energy, dark lines have appeared on my finger nails, feel dizzy, nauseous, some tingling and itchy/sore to touch toes, blind spots/blurred vision. Does anyone else have these symptoms. Do they eventually go away with time or medication as I always hope that tomorrow I might feel better and be able to get out the house as at the moment I can’t walk very far as I have no energy in my legs, even holding a phone takes too much effort. Having a scan next week as I am having pain under my ribs on the left side, I take it that this is my spleen. Has anyone else suffered from this, what do they do for it or how long does it last for or is it an ongoing thing. Any information would be great, thanks
Hi JEM1 and a very warm welcome to the Community but sorry to hear about your PV diagnoses.
Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot. (I have a completely different type of blood cancer).
The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated PV support group. This 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 click on this link > MDS/MPN/ET/PV/myelofibrosis (MF) then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
It’s a challenging time for you so you may want to use the Macmillan Support Line is open 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.
We also have our Ask an Expert section but do allow a few working days for a reply.
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 and give support to all the family.
Do get back to me if you need further help navigating the community.
