Hi all, just want to introduce myself, I’m Julia. I found out on 21st May that I have Essential thrombocythemia (ET), the JAK-2 kind. I’m a bit shocked and a bit scared but also relieved to know what is wrong with me after lots of blood tests and Hospital visits.
After specialist blood tests the Hospital gave me an appointment for mid July. The results took about 3 weeks and then my appointment was brought forward to 21st May so I knew I was going to be told something that I wasn’t going to particularly like.
I’m still coming to terms with this diagnosis and am experiencing mixed emotions, one minute ok and the next feeling a bit tearful.
Fortunately my platelets although high, are at the low end of high and I only need 75mg aspirin for the time being. I’m very encouraged by the stories I’ve read so far, both on here and on the website.
Wishing everyone on here the best of luck in your journey.
Hi @Jules17 I am so glad that you have found us, welcome to our support forum.
Reading your post brought back to me such similar thoughts and feelings as you are having, I think that they are completely natural, even those oscillating ones, because you have had a shock and I remember being in shock for ages.
Just take your time, really look after yourself and be very kind to yourself and please do keep posting as I look forward to hearing more about you.
Welcome to the Essential thrombocythemia (ET) club!! I was diagnosed with Essential thrombocythemia (ET) and Chronic lymphocytic leukaemia (CLL) just over a year ago and I remember vividly crying at night that I wouldn’t see the grandchildren grow up and scared at the thought of what was going to happen and how long I would have. Once I received my diagnosis I strangely felt more relaxed about it- sort of what would be would be! Roll on a year and interferon injections have brought my platelets down well into the normal range and I’m feeling better than I’ve felt for a long time.
My consultant gave me a very negative prognosis but having joined this forum as well as attending a conference it’s amazing to hear how well people are defying their prognosis’s.
So take heart, and live life to the full whilst taking as much rest time as you need!
@Jules17
Sounds like I have the same story as you.
The first week I was a mess but after Di ding this forum and seeing a different consultant I’m actually in a good place about it.
Hi Erica, thank you for your lovely message, it’s been really helpful to have been directed to this forum. I’m glad to know the feelings are normal. I’m actually comforted by the fact that this Essential thrombocythemia (ET) has a good prognosis in that you can be expected to live out a normal lifespan providing it doesn’t mutate into something more sinister.
May I ask how long you’ve been living with it? I’m hoping that when I get used to it, it won’t seem as bad. I’m thankful too that there doesn’t seem to be an urgency with any treatment which I take as a big positive.
I intend to keep up my exercise as that helps and I will take more ‘me time’ too
Thanks for your message. I’m glad to hear that you’re in a better place about it. This forum and the website has made me feel more positive about the future so I’m getting there in coming to terms with it all the best with your journey x
Hi Gillyj, thanks for your lovely message. I’m sorry to hear you’ve got both Essential thrombocythemia (ET) and Chronic lymphocytic leukaemia (CLL), that must have been extremely difficult to deal with and I can’t imagine the anxiety it caused you. I consider myself fortunate to just have the Essential thrombocythemia (ET). There is also no urgency with my appointments and treatment too which I’m all taking as a big positive.
I think finding out you’ve got something that isnt going to go away and it’s hearing that C word that panics you.
I’m so pleased to hear you’re responding well to the treatment and are feeling well in yourself too. I certainly intend to carry on with as normal life as possible but not feeling guilty about taking ‘me time’ too. I noticed a decline in my energy levels leading up to all this so like you said, it’s also a relief to find out what’s wrong and understand why I’ve been feeling different in certain aspects of my life.
I wish you all the very best in your journey you’ve made me feel a lot more positive
Hi @Jules17 Just to make it clear I actually have another blood cancer, Chronic lymphocytic leukaemia (CLL), but shared and share similar thoughts and emotions to you.
I was diagnosed 21 yrs ago and I have always been on active monitoring and manage my symptoms.
I went on a stunning walk in a park today.
I am work in progress on the ‘me time’ , it is my New Years Resolution every year!!
Sorry to hear you have Chronic lymphocytic leukaemia (CLL), I’m really pleased to read that you’re managing your symptoms though and you’ve been doing it for a long time, a very encouraging read so thank you for sharing that.
I think to begin with it’s the emotions of finding out you have a life-long condition that you weren’t expecting. I’m sure as the weeks turn into months and then years that I’ll live side by side with it and all will be ok.
I do have a positive mindset and will continue with that. I work full time and exercise regularly and that really helps.
Good luck with sorting that new year’s resolution for more ‘you time’
all the best with your journey x