Hi there. I am nathan and im 33 bext month. And just been diagnosed with ET on friday 02/09. I have read and heard that the prgonosis is excellent but still trying wrap my head round it all is a bit chaotic.
My consultant at the hospital says my platlet count isnt alarming high just a little higher than usual but i am jak2. A bone marrow test is needed to rule out other things but in her words. " in my medical opinion its ET" this test scares me incase they are wrong but she is confident shes not and i belive here. She said this diagnosis wont effect my university work and ill more than likely be with her under supervison until she at least retires. I am on low dose asprin only and have changed my diet to a more med diet as im not the healthiest of guys and joined the gym.
Ive never had any symptoms in my life and
Was diagnosed due to a routine blood test at the dr surgery due to ibs. I had 5 over space of 5 months and all came back slighlty elevated paltlet but nothing to serious. These levels didnt raise or fall over this time. They stayed same
I find during the day when am up and about im fine with the doagnosis. But at night my thinking is horrible thoughts and the morning i dont want to get up. Sometimes also in situations around family im bogged down when see them all happy and am scared ill not see it again. But that fades.
Just a rollercoaster of emotions and hopefully i can get support here and live normally without much complications and worry.
Hi @NathanB a warm welcome to our online community. Totally understandable that you’re still processing it all, I imagine it may have come as quite a shock, especially as you say you had no symptoms. Really glad you’ve joined this forum as I think many will share those same thoughts and feelings around being diagnosed. We are here on the support line if ever you want to chat things through - 0808 2080 888 and we also have webpages online that might be useful like our newly diagnosed webpages and our mind and emotions pages.
Take care - I hope you find this a supportive space.
Hi @NathanB a great big welcome to our forum, you are now part of our forum family.
Also if you feel the need to talk to someone the Blood Cancer UK support line is there for you.
I was in shock for a long while after I was diagnosed 18 yrs ago and I have seen some medical staff move on and retire in that time. I was also diagnosed by a routine blood test.
As you say it is a rollercoaster of emotions and it does not seem to matter which blood cancer we have we often share that rollercoaster of thoughts and emotions.
Look after yourself
You are right it seems to be that my washing machine of a head takes off at night and for me ‘the darkest hour is just before dawn’ (Mamas and Papas etc.). I don’t want to get up after a disturbed nights sleep too.
As for your university work I managed a years part time course at weekends, plus a full time job, the year I was diagnosed, but I just paced myself.
Let us know how you get on and look after yourself
Thanks so much. Im glad a joined this group it will give me some closure on the whole thing. Ive had no symotoms what so ever and im sleeping its just the morning i domt want to get up.
Im postive that the prognosis will be excellent and i will live a happy life for sometime
Hi @NathanB and welcome to the group. I think we all experience that roller coaster of emotions at the beginning and throughout our journey. It’s really early days and I remember feeling exactly the same.
I’m really glad you found the forum. There are many members on here who will be able to share their particular experiences as they have the same diagnosis. However, we are all here for you as we all know how you are feeling
Welcome to the community. I was diagnosed 2 1/2 years age with ET. Like you and many others it hit my like nothing I have ever dealt with before. I was 69 . My specialist told me over the phone due to no face to face appointments . I will never forget her words she said to me ‘ remember you are the same person now as you were before I told you the news’ how true she was . She explained everything to me and posted out info on varies ways of going forward . I decided after reading all the info on ET and the treatments and side affects That I would go on the watch and wait list . So that’s what I did , taking one Asprin daily and having regular 3 x month blood tests and keeping my fingers crossed.
Like yourself at first I could not sleep suffered anxiety and thought I was going mad.
I’m now in my 70s I have a new part time job and just returned from 3 x weeks in the USA .
I’m loving life and just had my last lot of results and my Platelets have dropped
So my friend you will get through this just give yourself time . Enjoy life and keep us posted . Everyone on here had helped me tremendously.
Look forward to your next post
Hi Nathan,
I feel for you and totally understand. I was diagnosed with ET last year (platelets of 750) and Jak2 following bone a marrow biopsy. Im 41 and really fit and healthy with no symptoms. It was a massive shock and a real knock to my life and mental health(why me!!!). It takes time but I’ve made peace with it now I take my aspirin and just feel really pleased I know I have it and can have the correct treatment. My consultant has said I can physically do what I like which has led me to run marathons (in less than 4 hours) and it’s led me to live probably a more exciting life. I have 2 small children and go on as many adventurers as I can because I appreciate my health so much more now and think you’re forced into appreciating how precious life is. Hope that helps, don’t feel alone!
A great big welcome @GemmaG to our supportive forum.
Wow, running a marathon in less than 4 hrs.
My diagnosis has also made me reassess my life, I realised that I was going through life on autopilot working, bringing up a son, running a house and sleeping just about.
Yes, you go on lots of exciting adventures and tell us all about them.
We are never alone on this forum and I really look forward to hearing more about you.
Spoil yourselves
A really positive post @GemmaG. I totally agree that although the diagnosis brings lots of negatives, so many say that it brings positive changes as well. It really does take time though - some longer than others but hopefully we all get to a place like you. I look forward to hearing more from you X
Im doing amazing in all honesty. Have started a university course full time so im busy and occupied with that. Havent ket the diagnosis bother me due to the kind words of others on here.
Im just taking each day as it comes. Living one day at a time. Ive not really thought about it or been sad by it all. I cant change the fact i have it so why worry. Acceptance. Accept the things i cannot change. When the hospital are worried by platlet counts or worried about it ill start to cross that bridge but for now. My lifes the same as it was a month ago all be it busier and healhtier diet.
Resilent outlook on it all. Accept it, deal with it and we move. Things happen to people all over the world…im no diffirent. It sucks but i can enjoy a full life. Liveable conditon and whos to say 10 15 years on theyve not found a medicine or a cure. In young and with monitoring and care by professional i genuinely beleive i will be fine. Postive mental attitude
Thanks for checking in and ill be using this forum for support as its a great comfort.
Wow, @NathanB I was so inspired by your post, so true.
Just after my diagnosis I started a year’s course which took place at weekends as well as me working full time.
I managed it by pacing myself and going to bed early.
Good luck with your university course.
Yes, please keep posting and look after yourself
Exactly the right attitude @NathanB and @GemmaG . I did the same when I was diagnosed with Myeloma and have lived my life trying to make the most of things and get out as much as possible. i think it taught me that I don’t know what’s around the corner so I should make the most of today. Look forward to hearing more of your adventures.
I think how you are feeling is completely normal. I was diagnosed with ET & Myelofibrosis just before Christmas last year after being in & out of hospital during covid 2yrs with chronic anaemia & the ET was missed. I felt very angry & kept it to myself & didn’t tell family until the middle of January. However I found support from the Blood Cancer helpline & I found I just all of a sudden excepted it. As for the bone marrow biopsy please try not to worry & read into it more & I found the procedure fine. It maybe helpful to write any questions or worries you have down & discuss with the doctor in question who I’m sure will put your mind at ease. You are taking the right steps by moving onto a healthier diet & keeping active. Rest assure you will always find a friendly ear here to give you any support we can. Keep us posted & take care.
