Hello,
It’s lovely to be able to chat to.people who have similar worries or advice to share.
I was diagnosed in July and am now waiting for a bone marrow biopsy in March.
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Welcome @Jucoo glad you have found us - let us know how your bone marrow biopsy goes - I am an Essential thrombocythemia (ET) patient and have had a few BMB over the years it’s ok and soon over - handy to have someone go with you as it can be uncomfortable sometimes after for driving
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Hi @Jucoo a great big welcome to our forum, you and @Jilly20 have really encapsulated what our forum is all about.
As you say it is also the similar worries that it is nice to be able to share and to realise you are not the only one.
I have also picked up handy hints on here like writing down my fears, questions and practicalities before appointments and being pleasantly assertive.
I really look forward to hearing more about you and how you are doing and feeling.
Also how your bone marrow biopsy goes in March
Thanks for reaching out and really look after yourself
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Hello @Jucoo
I was diagnosed Feb 2024. Had my BMB in November. It’s not the best but needs to be done. Make sure you have someone with you to drive you home and then rest.
This group is amazing. Nic to have someone to talk to that’s going through the same thing that’s for sure.
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Thankyou so much for your replies. I was feeling a little alone which I know is stupid. I know there are many brave people coping with loads more than me but it’s great to be connected. Does anyone else feel that their emotions are somewhat heightened.
🩷 to all
Jucoo
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Hi @Jucoo I definitely do not think it is stupid to feel a little alone, I can often feel very lonely if I am not on our forum.
I was diagnosed 21 yrs ago and I often say that my thoughts and emotions have been on high alert ever since, so I definitely agree with you.
I also still get anxious, before and during all my tests, results and appointments.
You are definitely connected on our forum.
I hope others will share their experiences.
I really look forward to hearing more about you, really look after and be very kind to yourself
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Thankyou very much for your kind words. I was considering not having the BM biopsy but think it should go ahead. Great to know you’re all there.
All the very best to you all.
Jucoo x
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Hi there Happy 2019,
How are you doing.
Jucoo x
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Hi Jilly 20,
How are you. I haven’t seen anyone for nearly 3 months and struggling a bit. My bone marrow is on the 19th but I really thought I’d have had to have bloods done in the 3 months.
Hope all is well with you
Would love to hear how you’re doing .
Jucoo x
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Hello @Jucoo glad you are having your BMB soon it is well worth having a real “roadmap” to what’s going on and how to help you the most going forward. As with any tests it’s normal to feel apprehensive beforehand and you will be glad when it’s done, but it helps your consultant look after you well so all part of good treatment for our conditions. The “norm” for Myeloproliferative neoplasms (MPN) oversight is 3 monthly blood tests, sometimes a bit more often especially in the early days of any treatment, but 12 weeks or so tends to be the regular check so it is normal if you have not been checked these three months. Perhaps ask next appointment if you have a clinical nurse specialist that you can call anytime between appointments with any concerns, sometimes you can ask too for an extra blood form to get your bloods done midway between appointments more for your peace of mind, just to see how things are going. Chat your concerns with your consultant so they know the in between gap between appointments can seem long for you so they know what you need. It can be daunting especially in the early years as you learn more about the condition and you can feel alone. Do know that the charity Myeloproliferative neoplasms (MPN) Voice specific for MPNs run a Buddy scheme or in person events that can be very supportive, likewise the charity LeukaemiaCare help with MPNs running an online support group there is one specifically for Essential thrombocythemia (ET) every three months and has long time patients like myself on it along with new patients this can also be supportive. All depends on what helps each person but if you take a look at their websites you may find further assistance. All the best and let us know how the BMB goes
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AHH thankyou for your reply Jilly 20. I haven’t been on the site for a while so just found it. The BMbiopsy went well thankyou. Uncomfortable but the staff were brilliant and pleased it’s over now 
How are you doing. It’s love that you take the time to reply thankyou.
All the best to you
Jucoo x
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Hello Happy2019.
Thankyou for your reply. It’s very good of you to get back to me. I have been a bit down and feeling a bit gloomy so not been on the site.
I had my BM biopsy yesterday which went well even though uncomfortable. Glad it’s out of the way at last.
How are you .
All the best to you
Jucoo x
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Hi @Jucoo if I am feeling a bit down and gloomy I tend to go into myself and I find that is when I need this support forum and the Blood Cancer UK support line on 0808 2080 888.
Be ever so kind to yourself
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Hi @Jucoo
Ouchy to the BMB. I had mine last November and hope not to have to have another one anytime soon.
I’m not too bad. Had a couple of down days myself and reading too much into things but I do feel this site is helpful in keeping me grounded.
We’re all in the same boat and all here for each other. Try not to keep things to yourself.
Jo x
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