Hi everyone.
So this is my first post and I’m only four days post diagnosis with an MPN
To say I’m spiralling and in a mix of tears and denial is an understatement, however I’m not shocked. Maybe I’m having a delayed response. You see I’ve been going to my GP for five years with issues ranging from irregular periods, excessive night sweats, silent migraines, complete exhaustion for no apparent reason. Apparently it’s because I’m female and the go to response has been hormones. I’ve been medicated and misdiagnosed so many times but the last 14 months have been complete hell. A random blood test in January 2022 in A&E for a slipped disc which they reported as a Gall Bladder issue, flagged a high platelet count, which led to sometimes weekly sometimes Bi-weekly blood tests from my GP until they finally referred me to the haematologist in May last year. I finally got my appointment in December and my follow up was this last Monday. ET Jak2 positive. The delay in getting the appointment in December wasn’t even Covid related it was because my medical records stated I’d had my gall bladder out so they were waiting for a decent recovery time to start probing the platelet issue. I have not had my gall bladder out.
Sorry if this post seems a ramble, I’m not angry, this isn’t curable so even if I hadn’t been told it’s just my hormones multiple times the outcome would still have been the same.
Im just caught in this weird phase of what’s next. Sometimes for an hour or so I’m good and then like today I’ve tried to strip my bed and put clean bedding on and it took almost two hours of me battling this wave of complete exhaustion. Is this my life now? I also feel like I’ve got an internal ticking time bomb waiting to go off.
I can’t process yet and yes it’s soon post diagnosis but I also can’t switch off the random questions that keep popping in to my head. I have a long list of things to watch out for but every new ache and pain this week has triggered an overwhelming fear response and I just don’t know what I’m supposed to do.
I honestly feel like I’m going a little mad. Anyone else the same after their diagnosis ?
Hi Sassyandsarcastic and welcome to the Online Community but I am sorry to hear about your MPN diagnoses.
I am Mike and I help out around our various Blood Cancer Groups. I don’t have MPN but I was diagnosed way back in 1999 at 43 with another rare, incurable but treatable type of Blood Cancer eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well….. and yes it took a few years for me to get a diagnosis- this is the world of rare blood cancers but I turned 67 last November and I am living a great life - there is lots of hope.
These incurable blood cancers are seen in the same light as chronic life long health conditions but once a clear treatment plan is put in place life tends to go on and your learn to live with the condition.
I worked in a demanding teaching job for over 12 years before I needed any full on treatments.
It would help you to talk with others with the same condition so can I recommend consider joining 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.
To join a group first click on the “Bold Link” I have created above 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)
You can then put up your own post when you’re ready 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.
You can also scroll through other members posts and click “Reply” to get involved.
I will keep an eye open for you in the group.
