Hello @Erica I just wanted to say I am thinking of you with the anniversary of your diagnosis. It must have been doubly hard all those years ago so close to Christmas. I had my diagnosis anniversary in November - 33 years, so I have lived almost half my life with blood cancer now. Of course I am grateful to still be alive but I do find it a difficult time, especially now that my twin sister has also recently had the same diagnosis. Every time she had a blood test I would hold my breath waiting to see if all was ok because, being identical twins, it seemed inevitable that one day she would get the same diagnosis. In the end she was diagnosed thirty years after me and at more or less exactly the same time of year - very surreal! Sorry Erica this post wasn’t meant to be all about me. I am thinking of you very much and thank you for all the support you continue to give on this forum. Wishing you and your loved ones a peaceful Christmas. Warm wishes Willow x
Hi @Willow oh, so your twin sister has had the same diagnosis, I just don’t believe you family history.
Yes, my cancerversary was very weird and reflective, mourning, plus survivors guilt. It was for my younger sister’s shock diagnosis of a different type of blood cancer to mine and her dying within 3 mths. A very special friend of mine who died recently of another cancer and whose birthday was on my cancerversary and another friend who died this year of another cancer whose birthday was this week.
I have just done the same and made this about me !! Anyway it must have been so scary awaiting your sisters blood test results as well as your own. Gosh 30 yrs later and at the same time of the year.
A peaceful Christmas seems really good to me and I look forward to hearing more about you in 2026. Very warm wishes to you and yours too.x
Oh @Erica! Thank you for your understanding and for sharing. I am so sorry to hear about how cancer has affected your friends plus your sister with a different blood cancer and losing her so soon. It is doubly hard, I think when these significant dates coincide if you know what I mean - like your friend’s birthday falling on the date of your diagnosis for example and now losing her. Yes, it has been extra stressful over the years waiting for my sister’s routine blood test results in case abnormalities were reported. She hasn’t really thought about it over the years. She told me that recently but it has always been a concern of mine.
As a separate issue she has a non healing ulcer on her toe which is very painful and despite excellent medical attention is showing no signs of resolving. She is waiting for an appointment with a tissue viability nurse. There is a possibility that the ulcer might be connected to the Hydroxycarbamide she was given at diagnosis for her high platelet count so she is now on Ruxolitinib instead. I still can’t get my head around her having to take the same medication that I have been given in the past. It feels unreal. All my blood counts are on the low side now as my disease has changed so my sister and I are at different stages but it is hard reliving a lot of my experiences through her! Thinking of you Erica and thanks for responding. Willow xx
Hi Eli
I have just seen your post. Perhaps my journey may help you . January this year I was diagnosed with polycythemia, Essential thrombocythemia (ET), JAK2 mutation. After being assured it was treatable I started with venesection then hydroxycarbamide. I am now 72 years old and surprisingly excepted easily, but did find it changed my outlook and temperament due to frustration at times.
For me it was a balancing act to get the drugs and treatment levels right . Some of the side affects were not nice but now I am back to 90 to 95% of my normal self.
Don’t expect any immediate could you changes from treatment the improvements are small and can take weeks, but all of a sudden you will realise things are better. As many have said with our conditions we will get back to a very long normal life.
To start with there maybe dark times but long term you will be OK. Never give up as their are lots of people on this site that can give you support .
Merry Christmas and a Happy New Year.
I did something I now half regret. I went to see a different hematologist as the one I had seen previously I felt was a bit ‘quick’ with me and didn’t give me the opening to ask questions. However, the one I saw on Wednesday was the complete opposite. It seems she has given me every single test under the sun - a myriad of blood tests seemingly checking for auto immune conditions, spleen ultrasound and even a test for obstructive sleep apnea. She wants to build a complete risk profile, seeminglyfor CVD. She did say that she suspects CHIP as opposed to full on Polycythaemia vera, though I think I am a bit young. The first hematologist I went to suggested none of the above and just asked me to take aspirin and do repeat blood test in 3 months. It sounds crazy but out of the approaches(you could say extremes) I actually prefer the fist approach. Am I mad? I am completely burnt out from testing and obsessing over specific numbers. I don’t want to know the statistical likelihood of me dying from heart disease, its too much for me, just too much. If the end result of all of the additional testing is anyway just aspirin and perhaps phlebotomy at this stage(even the second hematologist admitted that if I have Polycythaemia vera and not CHIP its very early stage) then what use is it to increase my anxiety even further just for the sake of ‘more knowledge’? Is it legitimate for me to go with the first hematologist who seemed to take a more minimalist approach of ‘if the way I currently treat it isn’t going to change by knowing more then I won’t put him through more’. I just can’t take going for more tests right now. And its a rabbit hole of the more tests you do the more you will have to do, as they always find something…. Just need a leg up and some support from someone who may have experienced similar feelings in the past. Genuinely appreciate the people on this forum so much, I cannot imagine going through this without them. Apologies for this long sulk.
Hello there @Eli, happy new year to you. Sounds like you’re being well tended to by that new haematologist with all the testing!
Speaking from experience of having a very hands-off first haematologist who even forgot he’d already prescribed me hydroxyurea (chemotherapy!), I’d rather have your second doctor who is checking thoroughly.
I was also checked for spleen size, sleep apnoea, and had a bone marrow biopsy (BMB) and aspiration. Myeloproliferative neoplasms (MPN) can sometimes make our spleens start producing blood cells which enlarges them and can feel uncomfortable, so that’s good to check.
My second haematologist tested me for sleep apnoea as it can affect how much oxygen our blood carries and Myeloproliferative neoplasms (MPN) affect how thick our blood is, so decreasing apnoea can improve our blood flow and thus symptoms of Myeloproliferative neoplasms (MPN).
I’d say, as you’ve already started the ball rolling with the new specialist, why not finish that testing? From what my specialists say, I likely won’t need another BMB, spleen ultrasound, or apnoea testing again, unless there’s major changes to how my Polycythaemia vera (PV) presents.
As someone living with PTSD, anxiety is a major part of life and going through testing for Polycythaemia vera (PV) really activated so many fears and unknowns for me. What I’ve found is having clinical answers that I can reflect on, go back to, and discuss with specialists who can explain them in terms that my non-medical brain can understand is so helpful. My anxiety has never been so low, I reckon due to knowing more about what I’m living with.
If anxiety is affecting your day-to-day life and mindful activities to help calm those racing thoughts don’t seem to help, then do consider seeking some therapy. Perhaps where you live you have access to great counsellors, is there a (blood) cancer organisation who might offer the support of specialist therapists? I know Blood Cancer United in the US can direct us to counselling.
I’ve been lucky to find an incredible trauma-informed therapist where I am who helps me tolerate the chronic illness part of surviving these sorts of blood disorders. I can’t sing the praises of therapy enough but I’ll end there as I don’t want to go on!
How would it feel to have all that testing done when you’re ready, to receive more information about what you’re living with, and then start treatment soon? Sometimes our gut reactions to these sorts of questions suggest the direction to take.
Let us know what you decide @Eli, I’m sure you’ll know what to do.
I really appreciate your reply @Duncan and wish you a happy new year! I’m as yet undecided exactly how I’ll go about it. I’m leaning towards a more hands off approach for now. I’ll go back for repeat blood tests anyway in March. Let’s see what they bring. If my hematocrit remains at the level it has been and the results look stable then I’ll likely continue the ‘monitor for now’ approach of the first hematologist. If there are noticeable changes then even my first hematologist may suggest a more hands on approach.
Hello there @Eli, wondering how you’ve been getting on? I hope all the testing has settled down and things have become a bit more predictable!
Hi everyone! I really appreciate everyone’s concern and support. Sorry I haven’t been on here for a while, been super busy. I have just had another set of blood tests and whilst I’ve not yet spoken to my doctors yet the results seem to be stable(no increase in hematocrit,hgb or platelets) so thats a positive. I sometimes have difficulty wrapping my head around the fact that I’ll probably be having regular blood tests every 6 months maximum for the rest of my life. I also get major anxiety before I take a test. Is this something that goes away with time? Thanks everyone again and sorry for the very delayed response.
Hi @Eli, great to hear from you - and stable results are good news.
The thing you’re describing about wrapping your head around lifelong monitoring is something a lot of people find takes time to adjust to. We actually have a page on active monitoring that touches on the emotional side of it, which might be worth a read. And there’s also a dedicated Watch and Wait support thread here on the forum where people share exactly this kind of experience.
As for whether the pre-test anxiety eases - I’d love to open that one out to the community, because I suspect people will have different experiences. @Erica, @Duncan, @Willow, @Steve.H and @Susiewest, how has it shifted (or not) for you over time?
Keep posting Eli, and take care,
Ceri - Blood Cancer UK Support Services
Hi @Eli I was diagnosed at 53 yrs old with another blood cancer, that was 22 yrs ago and I often say that my thoughts and emotions have been on high alert ever since. I have regular blood and other tests ever since, I have never had treatment. Regular tests used to be called ‘watch and wait’, but I prefer to call it ‘active monitoring’.I am a great one to reframe things from what I feel is a negative sound to a more positive sound.
You ask about wrapping your head around it all your anxiety. I will be honest I still get anxious, before and during all tests, but It is now manageable and I feel I have got my head around it and realise what is going on with me. I also think that I am a very lucky girl because being regularly monitored and anything amiss will be picked up quickly and I will be referred to my consultant and medical team.
A few years ago I was referred back to my doctors for this active monitoring and I admit I felt bereaved, abandoned, lonely, isolated etc. but when I thought about it my doctors is local so I can walk to the surgery and it is so much easier than going to my hospital, and again if anything is amiss I will be fast tracked back to my consultant and medical team.
Personally from my experiences I would say give yourself time and really look after yourself, your feelings sound very natural to me, please do keep posting.
Hello again @Eli, so nice to hear from you! I see dear @Ceri_BloodCancerUK and @Erica have offered amazing advice as ever and I really can’t add to what they’ve shared about tolerating the anxiety of having active monitoring AKA watch and wait treatment.
Perhaps one suggestion I can offer about how to tolerate the anxiety is by reframing it as sometimes being useful for focusing in on what’s actually worrying. Anxiety is such a primal unconscious response to threats, so making it conscious and naming it can help take the edge off that sense of threat a bit. Well, for me at least!
I don’t mean to minimise it as I know how anxiety can swell and take over much of our thinking. In some ways you could see the regular testing as a way to keep you safer, faster. Imagine if you didn’t have CBCs so often, would that fuel greater anxiety not to be tested at all? Maybe passing this past yourself will show you which is less anxiety-provoking.
I also wanted to apologise for not picking up on your previous comment that all this testing you’ve been having might indicate CHIP. I’d never heard of CHIP until recently and just to check that you mean Clonal Haematopoiesis of Indeterminate Potential? So fascinating that there is a sort of pre-Polycythaemia vera ('PV'), but I know the dread of testing can still hang heavily over us.
My advice is to try to enjoy having those stable blood cell numbers—this is all we can hope for when living with blood disorders (or without), and likely a sign that our bodies are working well. Many forum members mention how being on active monitoring can feel rather anxiety-provoking. I’m not surprised, knowing that you’ll be tested twice a year for a potential blood cancer is a horrible idea!
I’d say at this early stage for you that no wonder there is anxiety. Our bodies and minds spring anxiety upon us at times of threat and only time passing will show us that the CBCs and their results allow us to keep on living, moving forwards, and I promise that the testing comes to feel a bit routine. I even forgot one of mine, that’s how routine they can become!
To reiterate what I’ve said before about whether things progress to Polycythaemia vera ('PV') or similar, from my perspective it is tolerable and life can continue pretty normally. Believe me when I say I did not ever expect to feel like this, how could anyone live with blood cancer and feel at peace?! But I am a case study of 1 proving this.
Thinking of you @Eli, please keep sharing how you get on as I’m learning from you too, as I’m sure other forum members are.
Hi everyone,
I feel silly for posting about what is now a routine blood test, but I still get anxious before every blood test. I am due to have one early next week and again I’m anxious. Given that this will likely have several(currently 2) blood tests a year for the rest of my life I really feel I ought to ‘get used to this’. Any tips? Does this just get better with time? Thank you so much for your support! At best I’ll be relieved about having stable results, but at worse if they get worse…
Hi @Eli and nice to see you post again on the forum.
I think there’s always a bit of worry each time you have a blood tests and wait for results.
I’m having blood tests a lot less frequently now and tend not to worry about them.
I’m nearly 3 years since diagnosis and I know my Haematology Team really well. I know that if results moved in the wrong direction they would be straight on to it and discussing options with me.
Hopefully similar for you.
Take care
I have a very rare diagnosis of JAK2 ARG867W yr and looking for anyone that may have this and any information. I’m waiting to be seen by a specialist in London as no one knows much about this mutation.
Hello there @NickyG, welcome to the forum at what I imagine is a worrying time. I’m sorry you had reason to find us but you’ll see you’re not alone in being diagnosed with a JAK2 gene mutation—I have one myself, as do many other forum members.
Although I’m not medically trained, what I can say from my non-medical understanding of having a JAK2 gene mutation is that there are a few variations but that they tend to be most commonly related to closely related types of blood cancer called Myeloproliferative neoplasms ('MPN').
Personally speaking, my JAK2 mutation led to a diagnosis with Polycythaemia vera ('PV') which, 3 years later, is now stable. Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV') are considered chronic types of cancer that develop slowly, if at all. I expect to live into normal old age and pass away from something unrelated, according to my haematologist’s reassurance. Good enough for me!
So that’s about as much as I can share for now until you receive an overall diagnosis. May I just add though to hold out hope that the JAK2 diagnosis is not related to blood cancer. Incredibly, there are a few non-cancer blood disorders that can present similarly to Myeloproliferative neoplasms ('MPN'), or are a precursor to Polycythaemia vera ('PV').
When your diagnosis comes through do please let us know so we can support you in finding relevant information. In the meantime if you’d like to speak with the specialist Blood Cancer UK nurses about this difficult in-between place you find yourself their free number is 0808 2080 888.
Thinking of you @NickyG, keep us posted please.
Hey there @Eli, lovely to hear from you! No need to feel silly here, we forum members know how anxious these blood tests can make us feel.
What have you found helped with the anxious thinking previously? Can you practice this now in advance of the test next week? When I’ve noticed certain things have made me anxious before I’ll try to keep them in mind, sort of ‘live’ in my thinking, which helps to sort of pre-empt the ruminating.
Another way to tolerate anxiety is to try reframing the worries. Instead of dread at what might show up in the test results, for example (and speaking from my experiences!), could you see them as useful information that can help you make decisions more easily and that you only have a week to wait for this?
In answer to whether it gets better with time, and this is a very personal response, it surprises me to realise but yes it does get better, or perhaps I should say it gets easier. The test result anxiety for me has became more of a boost when I eagerly await my CBC results each month, now every third month. For me, knowing what my blood cells are doing via these CBCs is a relief. It feels like anything potentially more sinister can’t run away with itself as my blood is being checked so often.
Will you let us know how you get on please @Eli, and if you’d like to share how the results turn out then I’m sure you’ll find folks here who understand.
Hi @Eli I agree with @Duncan response to you, I was diagnosed 22 yrs ago with another blood cancer and yes, I am aware of feeling a bit of worry before, during and after blood tests and appointments, but it does get easier over time, I think when I was diagnosed my thoughts and emotions went on high alert for a very long time.
I am also a great fan of reframing say from ‘watching and waiting’, ‘watching and worrying’ etc. to saying ‘active monitoring’ and I feel that wording is what it says it is and I count myself very lucky to be so well looked after that if anything was amiss it would be picked up promptly.
Be ever so kind to yourself it does take time