Hi Maureen and Happy Easter!   I went to see consultant on Wednesday,was alarmed that it was in the Macmillan Cancer part of the hospital. I had blood tests done for the Jaks...asked the question have I got cancer...answer categorically no!  Now got to wait 10 weeks for results.Was told would not have to go down this path if not had stroke 2 years ago...It is to avoid having another stroke.My platelets are in the high 400s . I am utterly confused and alarmed by the cancer connotations.You are such a help and inspiration to many on this forum .Thank you x

Hello JuneP and a Happy Easter to you.  I suggest that the part of the Hospital you attended is full of doctors who have studied haematology, so have knowledge of all blood disorders, far better, say, that the orthopaedic or maternity departments!  They are obviously checking everything to keep you healthy and avoid another stroke.  Good to hear your platelets are still in the 400s.

Presumably they gave you a follow up appointment or will do so, when they have the Jaks result and, as it is 10 weeks until then, it will be summertime for your next appointment.  Luckily the pandemic is easing and we will be able to feel more confident about going out, so enojoy the Spring flowers and the sunshine.  I love having an afternoon cuppa in the garden or at the park!!   Bye for now.  Maureen  

Hi Junep,

Please don't worry about being in the Macmillan segment of the hospital. A few years ago they changed where I had to have my consultations from haematology to oncology. I was told it was because the haematologists work with the cancer teams so it made perfect sense to put their clinics together.

I think Maureen will vouch for the fact that when we were first diagnosed ET was not classified as a cancer pursay but as a chronic illness. We are still alive and kicking 20 years later! 

Have a lovely Easter in this beautiful weather.

Thank you very much for your reassuring message x

Thank you Maureen....yes it makes sense ,  enjoy Easter time x

Hi ,I woke yesterday with a bruised looking eye.No injury has coccured .Today it has spread ..have you had anything like this? I am alarmed by it.Still waiting to go back to haematologist.

Hello Junep

I haven't had this happen to me and I understand your concern, because it is not something that you have had before.  I suggest you contact your doctor and ask to be seen.  Let us know how you get on.  Maureen

Hi Inas, 

Is the first time for me posting on here. I am happy to see people being positive about this condition. I have pretty same symptoms like you. I am also jack 2 positive. I have palpitations, headaches once in a while, pain in my joints that come and go. I am a bit scared, i am only 33 years old and i have a daughter that she is only 2 years old. I can't stop thinking about how this condition will affect me :(. All the best for you

Hello Oana,

It's been almost a year and a half from my diagnosis and I hope you will be glad to find out that I am feeling much much better. Almost all my symptoms have gone and I lead what I call a 'normal' life now. I put the diagnosis at the back of my mind, in a very hidden corner, and I plan to leave it there for years to come. I have ET (or masked PV), they can't tell yet.

I do have my regular appointments and blood tests. My platelets range between 625-780 and I only take an Asprin every other day (because of the bruising and bleeding that I developed when taking it daily).

In Feb 2020 I was diagnosed with ET but in Jan 2020 I ended up twice at A&E with what the doctors said at that time it was a chest infection. That's when my breathing difficulties and all the other symptoms started. It was only the headaches that I'd had for years.

Looking back now, at most of my symptoms, I think it was actually Covid and not ET-related. My symptoms lingered for months, especially my breathing difficulties . In March 2020 I was also diagnosed with asthma (I never wheeze!) As all my respiratory tests came back normal, I was told something along the lines of : "Let's try some inhalers, if they help then you have asthma."

The only inhaler that worked for me was the steroid one. Initially I was on a maximum daily dose (since March 2020) but I managed to reduce it gradually. Now I only need 1-2puffs/week. My muscle pain, my fatigue, headaches have all gone but it took a few good months. I still have the odd palpitations but it is mainly related to my 'asthma' (just before I feel I need the inhaler) and anxiety. When I sleep better, don't stress much in work (rarely though!) and control my anxiety levels then I am perfectly fine!    

Probably the best advice I received from my Haemathologist was to eat well, exercise, maintain a normal weight and "don't take any nonsense in work" :)    This is what I plan to do because the ET is here to stay and I can't do much about it. I will take things one at a time, as they come, hoping that I will have a few more years of 'normal' life ahead of me, whatever that may be.

So, even though I really couldn't see that light at the end of the tunnel that many people mentioned here, I can clearly tell you that there is one and I hope that you will soon see it too. 

Hello Inas

So glad to hear that your ET is now well under control.  As you are of working age, I hope you have 15 or 20 years of retirement, before 'normal' becomes more difficult to manage with the usual elderly aches and pains.We probably exchanged messages last year and you may remember that I have had ET for over 20 years.  I am now in my 80s and fully intend to be here for at leats another 10 years or more, hoping I can beat my maternal grandmothers age, when she died.at 97.

I have now had two haematologists retire on me and am waiting to meet their successor, although my consultations every 4 months are by phone nowadays.

After such a difficult year, I hope you enjoy the summer with your family all well.

Maureen