Thank you @Nichola75 . I am so glad I found this group as it certainly helps being able to talk to people who are going through or who have been through similar . I am happy to wait but find it hard to accept anything is wrong. I thought once I got the results, that would be it but the dr said that the negative JAK2 test doesnāt always mean no diagnosis. My platelets were at 602 but have come down to around 444 he said, but at times they have only been around 402 so heās not overly concerned at present.I felt relieved but at the same time still feel like thereās no answers. I can only imagine most of the people on this site have all experienced this. I just feel so lucky to be able to talk to people who understand as my poor husband tries to support but he doesnāt understand all of what it could be. Mind you, nor do I half the time 
. Xx
My husband tries as well but itās a very hard thing to understand if youāre not experiencing it.
Itās an amazing forum family!
Wow @Nickijc what great news about getting those negative test results. So you tested negative for both JAK2 and BCR-ABL1? Thatāll hopefully mean a lot less stress and no more dreaded waiting. Wonder what caused those elevated platelets though, maybe some kind of infection? Iāve got complete blood count test results from before, during, and after a UTI and my platelets and other blood cell numbers jumped up during the infection. I wonder if stress alone can trigger these immune responses in our bodies and thus elevated amounts of blood cells? Might be worth asking your doctor about your results for more clarification and to relieve stress.
For what itās worth, Iāve taken a daily aspirin for over a decade since my heart attack and Iāve never had any noticeable effects aside from it thinning my blood as planned. I didnāt even know ulcers could be a side effect! So it can be a preventative treatment with very few contraindications with other medicines. I had my second venesection yesterday and the nurse reminded me that having thinner blood and less blood overall (from the bloodletting) makes our heartās job easier and decreases the chance for clotting, so Iām glad Iāve already been taking aspirin!
Hope your anxieties decrease somewhat since getting the negative test resultsāenjoy knowing your health is doing okay right now and donāt forget to treat yourself!
Hi.
Iām Andy, 60, from South Wales.
I got diagnosed with Chronic lymphocytic leukaemia (CLL) in November 2021.
Iāve been on Watch and wait since then, but have been told that my Chronic lymphocytic leukaemia (CLL) is progressing and that Iāll could be starting treatment by the end of the year. Iām on 3 monthly blood tests at the moment, so I guess Iāll see how it goes in November. The team at the hospital have been brilliant, but they are the only support really I have.
Up till now I havenāt really had any symptoms, apart from possibly a little fatigue.
Though even the fatigue can be partly blamed on my age and work shifts and apart from that Iām healthy.
I guess the hardest bit is the mental shift. Mostly I think positively, but there is always that little niggle in the back of the head.
Hi @AndyRo and a big welcome to the forum.
You explain so well how I feel a lot of the time. Iām also quite positive but at certain times of the day - usually when Iām trying to sleep - I have that niggle!
It must be hard knowing youāll need treatment soon. I know it would play on my mind. So often, part of the blood cancer journey, involves waiting.
The mental shift is really hard isnāt it. I find the mental health the most difficult to deal with and have had counselling a number of times over the 6 years I have been on watch and wait.
It is good to hear you have a good medical team. It be useful looking in to local support groups where you are around people that understand. There is also the support line of you need it - Iāll post the link below. You definitely have your forum family now so please keep posting so we know how you are doing 
Hi @AndyRo, a very warm welcome to the forum. Thank you for taking the time to share this. Itās so understandable to find the mental shift tough. Nichola has given you a great response and as sheās said- our support line is here for you. Weād be more than happy to talk things over with you. Please do remember youāre not alone in this. Take good care of yourself,
Best wishes,
Tanya.
Welcome @AndyRo and thanks so much for posting. Though I have a different kind of blood cancer, there are so many here with Chronic lymphocytic leukaemia (CLL) and have all experienced and shared difference of experience of moving from diagnosis and treatments. You definitely arenāt alone and be sure to find and share your experiences too so it feels a less of lonely journey.
I totally empathise with the feeling fine but the mental aspect that sometimes acts as a reminder both for good and bad. Good in that, you do need to focus on yourself and do whatās best for you as you get your head round how this diagnosis is going to fit into your normal!
Look forward to hearing more from you bud
I would also like to welcome you to our forum @AndyRo
I am 73 yrs old and have had Chronic lymphocytic leukaemia (CLL) for 19 yrs and have been very lucky to always be on watch and wait.
You say your medical team is the only support you have, well now you are part of our forum family and the Blood Cancer UK support line is there for you if you would like to speak to someone on 0808 2080 888.
Oh even after 19 yrs sometimes I feel positively, sometimes more negatively and there is always that niggle there which gets worse before and during tests, results and appointments.
I always say my emotions went on high alert and started fluctuating when I was diagnosed. I am also more emotional now.
When I was diagnosed the mental aspects were just not considered.
Please do keep posting I would like to hear more about you, look after yourself
Hello, so sorry for your loss, hope your training is going well. Thank you for supporting BCUK
BW Anna
Hi, I am Dan, 48 of age and just joined this forum, I have just been diagnosed with essential thrombocythaemia ( et ), I donāt have any symptoms, I learnt that I had it after having a pre op for a operation to remove my gallbladder, itās been a bit of a blur the last couple of days especially when they say itās a type of cancer, I have been told that there shouldnāt be any change to my life expectancy, been told to take aspirin every day, just starting to read up about it
Hey, @Rst2dan a great big welcome to our forum, I am so glad that you have found us.
You talk about being in a bit of a blur, I am not surprised, I reckon you might be in shock, I would be.
You were having a pre op for a gall bladder op., what a thing to happen.
I hope I have replied to you quickly enough to give a friendly warning aboutā Dr Googleā, perhaps there is some unreliaable information out there
We have found it best to stick with the Blood Cancer UK website and our forum.
You have been given some good advice that you might be more likely to die with Essential thrombocythemia (ET) than from it.
I hope others will share their experiences of Essential thrombocythemia (ET) with you.
If you have had your gall bladder op, really look after yourself and heal and then try and enjoy your life.
I look forward to hearing more about you and donāt underestimate the emotional impact the last few weeks have had on you.
Hi @Rst2dan,
Itās great you have posted. Iām sorry to hear that you have been unexpectantly diagnosed with Essential thrombocythemia (ET). I hope you are recovering okay from your op & feeling okay today?
It sounds like youāve been given some good information and offered reassurance but we understand that might not feel enough & you might have some unanswered questions both now & in the coming weeks.
I wondered if it might be helpful to link in our newly diagnosed booklet as it offers some information around practical steps and what to expect next- Your blood cancer diagnosis: What happens now? | Blood Cancer UK Shop
Please do know if you need to talk anything through, our helpline is very much here for you- Blood cancer information and support by phone and email | Blood Cancer UK
Do Take Care, Lauran
Hey there @Rst2dan! Really sorry to read that youāve also been diagnosed with an Myeloproliferative neoplasms (MPN). I have a slightly different form to yours called Polycythaemia vera (PV). Iād say from my experiences so far that the shock of diagnosis was grim and even felt a bit like grief for my former non-cancerous self. Be kind to yourself and try to keep expressing how it all feels as going suddenly from no symptoms to blood cancer is obviously a big life event.
Out of interest, did you have a bone marrow aspiration and biopsy to confirm the diagnosis? Was a gene mutation found? I also had no symptoms before my diagnosis, and am relieved not to have experienced some of the horrors that other survivors have whilst also feeling a strong sense of survivorās guilt at having it so easy, relatively. This forum is truly great for finding empathy and support from others who understand.
I note that youāre also a young diagnosee and that creates additional pressure in a weird way as we have so much more of our lives to potentially live while these diagnoses threaten that longevity. All quite existential so no wonder it feels like a blur right now.
Taking aspirin will help thin your blood and lessen the chance for dangerous clotting which MPNs can cause, as Iām sure youāre finding in your blood cancer crash course. Try not to worry about aspirin side effects as they are minimalāIāve taken it daily for a decade with no ill side effects.
Please just ask anything thatās on your mind and thereās bound to be folks here who can offer advice and at the least empathise with what youāre going through. Thinking of you at this tricky stage, Dan.
Hi, Iām Jon, 67, male.
Was diagnosed with Myelodysplastic syndrome (MDS)/MPNoverlap in May this year. Tracking deterioration in bloods as per the pic. Still perfectly fit but will be advised chemo once Haemoglobin is below 100 etc.
The Myeloproliferative neoplasms (MPN) (Essential thrombocythemia (ET)) is losing out to the Myelodysplastic syndrome (MDS) hence platelets are perfect as they head south from far too high to however low they end up going. I have 3 mutations:ASXL1, EZH2 and SF3B1 and am low/intermediate risk having monthly blood tests and probably a second BMB in a couple of months. Very interested in nutrition, vitamins and alternatives to what looks like a pretty grim road to travel. Other history- discectomy 13 years ago, atrial fibrillation 10 years ago, lichen sclerosis 8 years ago, then in 2022:: suspected breast cancer- was a small benign cyst , itchy scalp, and microembolism in toe leading to referral to Haemotology early 2023. Wasnāt overweight and have lost a stone maybe due to 16/8 intermittent fasting and reducing alcohol significantly.
Hi @Jono I responded to your other post.
As I said in that post we sure are all very complex, unique beings and that is why you will find we usually refer people to their medical teams with medical queries as they are the ones that know us holistically.
Be kind to yourself
Evening!
I am new to this and hoping i am posting in the right forum! My Dad aged 79 - 80 in October was diagnosed with multiple myeloma in January this year. Like many of you this has been a roller coaster and i am learning fast about the condition and how to help him. He has lived on his own for the last 6 years since our mum died and has always been exceptionally active so this has come as a complete shock. He is in partial remission which is positive - however, the one thing that is extremely debilitating for him and us to see is how fatigued he is. Every time he eats he falls asleep or needs to lie down, and just doesnāt have the energy to do very much. Though out the day he will regularly just lay down for a short rest, but even after that he is still exhausted. His last chemo was early June. From researching what i can, it does appear that chemo can take a long time to work its way out, but does anyone have any suggestions or ideas that i can suggest to try and give him just a little more energy which i know will make him feel better!
On the plus - my daughters and i are running the Royal Parks Half Marathon for Blood Cancer in October this year! Just nice to be able to make just a little difference!
Keren xx
Hi @Keren842 a great big welcome to our forum and you have posted in exactly the right place, although anywhere would have been fine. The important thing is that you have posted.
Thanks for setting the scene so well and āroller coasterā is certainly what it is.
I think multiple myeloma, and most blood cancers and treatments do really take it out of patients and this is emotionally, medically, psychologically, physically and practically.
This experience also takes it out of the family members too.
Your dadās body has been through a lot with chemo.
It is a lot quicker to deplete our batteries, than to fill our batteries back up.
Also age is a factor.
Fatigue is not just feeling tired, it completely wipes us out, trust me.
Personally I think it is just naturally involving your dad in short family events, this can even be virtually. This is just to take him out of himself for a while.
I expect he will be having regular medical tests and check ups.
If your dad would be OK with you attending and talking during his check up you could say exactly how you see your dad.
Yes, on the plus how impressive it is that you and your daughters are running the Royal Parks half marathon, thanks for fundraising and making a difference.
Look after yourselves, all of you and please keep posting
Hi Erica
Thanks for this. Since dad was diagnosed early January, Iāve attended every appointment with him - just to help him and my family understand how multiple myeloma works! I am learning very quickly about the different stages and all the medical terms! This week, dad has come to stay with me and my family for a couple of weeks, as we live close by and to try and give him a break with some additional support. The local haematology unit have been good, with support - itās just trying to find a way to help him with more energy! I am hoping it improves over time!
Thank you!
Hi, Iām Christine. Iām 76 & was diagnosed with smouldering Myeloma in July & am currently on āwatch & waitā. Iāve found it quite difficult to come to terms with the whole scenario, as I had no symptoms & was diagnosed following general blood tests ordered as a routine check up by my GP. I do feel confident that Iām being monitored. The PET scan showed up an unrelated issue - possible ovarian cancer & following an MRI/CT pelvic scan, Iām now facing surgical investigation - more than likely a hysterectomy because scar tissue from 3 C-sections could prove a barrier to keyhole surgery. I suppose I should be thankful that both the Myeloma & gynae issues were discovered by chance, and most of the time I am, but nevertheless, itās quite difficult to remain positive & not allow stress to affect my wellbeing, though Iām trying my best to take it a day at a time & practice mindfulness & continue to enjoy my daily walks that do wonders for my metal health.