Hi all,
I am waiting on my results of the JA2K blood test, but have to wait to see the consultant until the 29th of June, is this normal I am completely stressing about it and feel like the days are going backwards. I must say reading the posts on here are making me feel a little less anxious.
any replies would be really appreciated.
Thanks
Sarah xxx
Hello there @Natsmum, welcome to the forum at this stressful time. Iâm glad you found the forum and have read around it already as it really is a great place to find reassurance.
Back in 2023 I was tested for the JAK2 gene mutation and I remember the waiting you describe so well, âlike the days are going backwardsâ is so true. From what others around the forum say, it can unfortunately take ages. It really varies around the UK, but a few weeks is not unheard of. My dadâs took over half a year, and he lives near a university hospital where these sorts of gene mutation tests are done.
So Iâd say try to settle in for whatâs likely to be a bit of a wait, and my personal advice would be to find healthy distractions. Do you have hobbies or activities that really engross you? I did a lot of hiking and rewatching old favourite films, to some success with distraction. Writing about all this can also help with the anxiety and being able to reflect back on how thinking has changed. Sharing worries with loved ones can also be very supportive right now. Just a few ideas, I bet you know what is comforting to you.
If the wait feels just too long Iâm sure you could contact the consultant to explain how difficult it is to hold on till the end of June. They may be able to verbally hand over anything of note sooner, but you may need to be pleasantly assertive and point out how the wait is causing anxiety.
I wonder if you have access to the NHS app? Other forum members use it and can receive some test results sooner that way, might be worth checking out. Some GPs and NHS Trusts arenât set up with it yet, but it might be worth trying.
We forum members canât offer medical advice, and prior to receiving test results I wouldnât want to share any information that might cause greater anxiety, but I know the Blood Cancer UK nurses would be great to speak with about all this. Theyâre experts in blood disorders and resources available to people affected by them, and can be called free on 0808 2080 888.
Hope that helps a little while you await those results Sarah, do please keep us posted about how you get on.
Hi Duncan,
Thank you for replying, all my blood work I have had done with my GP since January I have a high red blood count (off the scale) and my hemocrit is also sky high. My dr went to the haematologist for advice and it came back saying I needed this JA2K test and an appointment for the 29th of June. I only found this out by looking on the NHS app. My dr just sent me a text saying I have been referred etc. so I have looked all this up myself. Just seems a long time to wait to see a consultant on the 29th of June. I think I will call the number you game me just to get some answers, have a holiday coming up and worried wether I should fly etc.
thanks again and will keep you updated
Sarah x
Hello @Natsmum
Welcome to the forum - and thank you for taking time to reach out
If i may say - I feel i can relate to your situation a little as i have Chronic lymphocytic leukaemia ('CLL') and i am on what my GP referred to as âwatch and waitâ but i prefer the term âactive monitoringâ and i have regular blood tests.
My most recent bloods were taken way back on the 7th of March and i didnât get the results back until last week, so yes the wait is so frustrating!
The overriding message i was given was that if there was anything urgent i would be contacted, so i took this to mean no news is good news.
You mention being anxious and again it is something i felt - but again the fact no one was in touch straight away confirmed there was nothing that needed to be addressed quickly
I really hope that this is the case for you - and i do hope you let us know how you get on.
Please remember, if you prefer, you can always call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
Our phone lines are open:
Monday, Wednesday, Thursday, Friday: 10am â 4pm
Tuesday: 10am â 7pm
Saturday: 10am â 1pm
Sunday: Closed
Bank holidays: 10am â 1pm
Alternatively, call us anytime and leave a message and weâll get back to you within one working day.
Take good care of yourself
Kind regards
Mike.
Hello @Natsmum
Sorry to read you are getting stressed whilst waiting for blood results. It is completely understandable to be worried about both the result of the test and the appointment being so far away.
I can see that Mike and Duncan have already given you some good advice, and told you about the Supportline - please do call us, weâd be more than happy to discuss things with you over the phone.
May I ask, have you had the blood test for JAK2 (and other genetics) yet? Usually the wait for these results is between 3-6 weeks in the UK, hence the appointment booked for the end of June, as the Consultant wouldnât have much to tell you, without these. However, if the Consultant is worried about your blood counts and/or the results are back sooner, they may send you a new appointment for earlier in the month.
Do get in touch with the Haematology department or your GP if you start to experience new or worsening symptoms, most common would be: headaches, blurry vision, numbness/tingling or burning in your hands or feet, fatigue, breathlessness - you donât have to wait until 29th June to let them know how youâre feeling. They may want to re-check your blood counts again and keep an eye your haematocrit (and red blood cells) level.
Between now and your appointment make sure to write down all of the questions you have, particularly anything specific to you, then youâll feel a bit more prepared when the date comes around.
Do keep us updated on how you are, it can be very tough waiting for appointments - weâre all here for you.
Take care, Heidi.
Thank you all for replying, I had the JA2K test 3 weeks ago so makes sense why my appointment isnât until the 29th of June. Thanks again really appreciate the replies x
Sarah x
Hi @Natsmum I am so glad that you have found us and I think your feelings are completely natural. When I was diagnosed, with another blood cancer, I was in complete shock and felt I was in a bubble, the only person in my situation and yes, stressed out and in limbo.
Personally I have found there is a lot of waiting around and not knowing and yes, some tests can take a long time to come back.
I wonât reiterate the brilliant responses of @GenesisDevice @Duncan and @Heidi_BloodCancerUK but we are here as you are now part of our supportive forum.
Be ever so kind to and look after yourself and I look forward to hearing more about you.
Thank you for replying, I just hate not being in control as I am a bit of a control freak, also panicking about it all as my youngest is only just turned 14 etc, but having read a lot on this forum and the website I feel a little better about all. Everyone has been so lovely and I will keep you all updated etc xxx
Thanks again it means a lot and I donât feel quite so alone anymore x
Sarah xx