Morning all,
It's 0350, I got up with hubby as he's off to work in a bit. I'm having a moment. I've sat here before wanting type, ask questions & generally say these ars*ng poxy scary-ish words out loud without sounding like a self pitying moobag.
I've gone through a process since May this year of blood tests that have thrown up a condition called Polycythemia. I spoke to the hematology consultant at the beginning of October, few more in depth tests & bloods done at the hospital to determine whether it is secondary or aquired. One is somewhat self correcting, although will be monitored, one will require treatment. Gene tests take such s long time!! It's still not back yet. Everything else is back, I know there was trans ferrin saturation & bone chemistry on the last form, along with a couple of bits I couldn't read & even the blood test lady had trouble with it. I've had a CT scan, can't remember why I needed that, which has found multicystic lumps on my left ovary. So now I've been refered to Gyne as well. I had a call Wednesday afternoon to go for an MRI this coming Tuesday.
Now I'm scared, emotional, my rational head is telling me not to panic, that 'we' don't know for sure yet and the emotional bit is quietly having a nervous breakdown. I have an appointment with the hematology consultant again on 19th Dec, although the letter says she will call me sooner if needs be. Now every time the phone rings I flap. It's not insurmountable, it is treatable ... I am frightened xx
Hi Sparkly and a welcome to the Online Community but so sorry to hear about your diagnoses.
The cancer diagnosis process is such a stressful and challenging time but you have done the right thing in reaching out to a place where you can ask questions and getting support from others who are on the ‘exact’ same cancer and journey.
I was actually diagnosed way back in 1999 with another very rare type of blood cancer but here I am, 23 years on living a great life so there is lots of hope out there for you. I have also talked with a good number of folks who gave PV and they are also getting on with life…… it just takes time to understand the condition and haw to live with it.
The Community is divided into support groups (discussion rooms) so can I recommend you join and post in our supportive MDS/MPN/ET/PV/myelofibrosis (MF) support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
If you'd like to connect in with a group click on the Green (Bold) Group Link I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits/financial guidance or just connect with a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.
We also have our Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.
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 aim to give support to all the family.
Do get back to me if you need further help.
Thank you xx I think the early hours were getting to me & I'm glad I've working from home today 
Hi again Sparkly, the mind does wonder during the night but one very good tool is a simple note book. You keep it near you all the time and It’s the place where you ‘brain dump’ everything that hets your rain going. Doing this will help as in reality, as much as you want to stress this, all the stress in the world will make no difference to what happens down the road….. but living in a stressful state will ware you down.
Do connect in with the PV group.
