I am Sue … diagnosed with ET Jak 2…a few years ago …. I am wanting and needing friends… as I feel so alone … only few family members …but no one who really understands … I think I myself have been in denial for a long time …but can see now I need to connect with others who are on the same / similar journey … look forward to talking to anyone who wants to talk … Thankyou for reading my post … Sue x
Hello Sue welcome and I am glad you have found this lovely charity and forum. There are quite a few here who have MPNs so you are not alone. I have ET diagnosed 15 years ago when I was in my mid 40s - once diagnosed I realised I had had patches of ET symptoms for many years after being very ill with bone marrow issues when I was 18- but it was the 1970s diagnosis not too good then, so it took many years to get a diagnosis for me and then “all made sense”. Do know many have lived with their MPN and its treatment for decades and done well. Do also take a look at MPN Voice the charity specially for our conditions - and their own forum is run via Health Unlocked. They run in person patients days, currently on line, which is a huge help to touch base with others in your situation and hear good talks and presentations from the professionals - I know there is one this Friday, there may still be places available. Also MPN Voice run a very helpful buddy system which you may want to think about. Keep going you have others in the same situation as you than can support and help. All the best
hi I have exact same as you , living with ET for 20 plus years , I got along fine for years ( apart from catching every cold about and half would knock me out for a couple of weeks ) , taking meds ( hydroxy) and 4 blood tests a year , until 5 years ago when I suddenly got chronic fatigue, after a battle eventually reduced meds very slowly and was just getting back normal when covid struck, which meant shielding . So yes for a long time myself and the people around me didn’t really treat me as if I was ill , "it’s not proper cancer " has been said to me more than once , and yes it could be so much worse and I’m very grateful its not , but its not trivial either. anyhow you are not alone
Hi @shishabell and @caz and @Jilly20 welcome to both of you and you are no longer alone you are now part of our forum family as @Jilly20 shows so well.
OK, we might all have different blood cancers, but we often seem to share the same fears, thoughts and feelings, especially with the isolation of the last Covid18 mths.
I hope you will both find us informative and supportive. The Blood Cancer UK website has a lot of information on it and if you would like to talk to someone the Blood Cancer UK support line details are above.
Some of us are not currently on treatment but ‘watch and wait’ or ‘active monitoring’ and that is so difficult to explain to people and they cannot comprehend that we live with a Blood Cancer like a ticking timebomb and are not making it up or a fraud, especially as I often look well, although I might be struggling inside, especially with fatigue.
I really look forward to hearing more about you both and look after yourselves.
I know it’s tough using family and friends to understand what you are going through and show and give the support you need.
Rest assured you now have a place to go to and chat to people and get make virtual friendships with people who get it and can offer support and advice or be simply an ear. The folks on here are amazing and very quick to feel listened to.
Hello Jilly …,
So nice to hear from you …it’s so good to feel others are there who understand… look forward to getting to know one another … best wishes … Sue x
This is a great forum and everyone is really nice. I have ET also. Diagnosed last year and yes it is a shock. I’m on the watch and wait list. Just Asprin once a day at the moment. They missed my last blood tests as they forgot me. I have an app in November now to see how my platelets are. I’m doing okay but just lately very tired. I try and keep positive . I exercise every day and have bought a bike to go out on. I try eating healthy but it’s not easy as I’m not keen on veg. Anyway I hope you now feel that there are lots of us with ET so your not alone . Frances
Hello @Macymae123 and welcome . I was diagnosed in March this year 2021. The website has been invaluable at key times just to ‘say’. It’s such an individual journey this cancer thing …. but most people will want to encourage you on your journey and share info and advice. Be careful what you take on board though as it is so individual. There are generic things (and it’s good to know those) but how each one copes with this or that( including coping with types of medication) will be individual. Your prognosis also is individual and best left to your clinicians rather than what happened to someone’s ‘friend , aunty , uncle …) . Some people lose all sense of humanity by telling me who died frim my condition and when ….completely oblivious of the potential impact . Take care and if I can help in any way, I will. I know something about myeloma because that’s my particular challenge but I know very little about other types. I know a little about the stem cell collection process.
Hi @Macymae123 sorry to hear that you have been feeling very tired yesterday, I am wondering if it is what we call fatigue and is a common symptom with blood cancer.
Have you spoken to someone on your medical team about it?
I am glad that you are exercising every day and also have a bike, I find walking so beneficial.
Healthy eating is so difficult if you are not keen on veg.
I add things like sultanas and apples to casseroles etc, it is surprising what you can hide in casseroles.
Can anyone else help on here?
Yes, you are never alone on here.
Look after yourself.
Hi, I had the ET diagnosis a year ago, platelets at 1100 so was put on hydroxy immediately. A year later they’re down to 590 and I’m feeling ok, aside from the the tiredness. One consultant once explained that this was down to the extra busyness of my bone marrow! Busy busy busy! It’s really encouraging to hear from people who have had this for many years. Stay well everyone
Hi a great big welcome @Shell33 and thanks so much for sharing your experiences having ET, you have shown the value of our forum already.
I hope you will find the forum informative and supportive.
I see things very visually and I can now see the extra business by little red devils in my bone marrow !!!
Look after yourself I look forward to hearing more about you.
Hi @shishabell you came to right place. We all know how you feel. Family and friends always lend their support but only people who have had similar experiences really understand. Hope you’re coping ok and do always tune in and offload when you need to.
Hi I am Sue too. I was diagnosed about 5 years ago with the same as you. ET Jak 2. I had no idea I had it. It was found in a blood test I have regularly for another rare condition, scleroderma. I take hydroxicarbamide and various other medications. I try not to think k about it too much and like to keep busy. Cycling, swimming, walking and yoga.
Here if you want to chat
Wow I had to look up ET Jak 2 I thought that it might be short for something!It would seem to be some kind of leukemia? More common in women the reverse of the Lymphoma that I have, Mycosis Fungoides, which is more common in men.There are so many strange cancers and I’d never heard of most of them until I was diagnosed with one of them!
Hi, I have had JAK2POSITIVE ET and been on meds for 6 years. If you are a letter writer I would be happy to exchange perhaps monthly letters. I know not many people like writing letters these days but I do. Anyway, the offer is there but unsure how we would exchange addresses discreetly.
I find letter writing really therapeutic
Hi Sue I have just been diagnosed with ET AND Polycythaemia vera (PV)
How are you doing
My concerns are how do I reduce risknof infection to myself at work
I do have a supportive family so I am.lucky
Am always here to chat if you need someone to talk too
Hi @Walburd I am so glad that you have found us and you have shown the support value of our forum already by supporting Sue.
You say that you have just been diagnosed so I am wondering how you are doing. I know that I was in shock for a long while and I felt that I had entered this parallel universe that spoke a medical language. I also felt in a bubble with the world carrying on as normal around me.
I also could not explain to family, friends and work what I did not understand myself.
In hindsight I wish I had honestly talked to my work more and told them my concerns and needs and hear what they would do for me. Risk assessments can help. Home working where appropriate. Personal and Occupational Health Departments and Unions might assist.
Unfortunately I have found that I cannot control what others do, all I can do is take my own precautions.
I felt lonely and isolated.
A supportive family is priceless.
How are you doing and feeling?
I look forward to hearing more from you.
Shocked as first
I have told everyone work friends family
I have explained Polycythaemia vera (PV) ET to them all so they have some understanding
I know I will be monitored closely , it’s basically out of my control I just have to go with the specialist advise
I have spoke with occupational health and awaiting My manager return from annual leave to refer me
I am a Midwife in NHS
I have worked all through pandemic and probably had all the symptoms then which I though was menopause
I have looked after covid positive women
So now I have a diagnose I truly want my risk assessment done as I need to think about myself now for my family too
I really don’t want what restrictions they will do I wear PEE but is that enough its scary
I want to manage my condition as best I can
I recieved a very informative email from blood cancer UK very helpful
So glad they have a forum for us all to support each other
I am happy to help anyone who needs it
I will have to say am sick of the sweats!
I just started aspirin nowl next appointment 22nd Nov so see what my levels are then
I had a low day yesterday trying to get my head around it all and questioning why it happened to me
I don’t drink I don’t smoke I try keep healthy
Us it because I am around chemicals in NHS
But now I have to realise it has and I have to learnvto live and manage it and try not let it take over my life
Thank you for your quick response if anyone needs any help let me know xxxx
Part of the club now
Dont feel.lonely guys we are here to listen chat vent shoulder to cry, get out the frustrations and stress
We are together in our journeys and wgats more special then that
It’s just a shame that these types of blood cancer have bought us together
Angie with love to you all
That all sounds great
Am newly diagnosed Polycythaemia vera (PV) +ET