Hi @Ellie you certainly have a lot to contend with at the moment, I take responsibility with other departments of reminding them of my blood cancer and weakened immune system and I had a hysterectomy and bladder prolapse op successfully a few years back.
I was discharged from hospital in the evening of New Years Eve and got all cosy in bed and fell asleep to be woken up at midnight by a noisy firework display.
Be very kind to yourself
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Thank you so much Erica! This is so reassuring X
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Oh goodness @Ellie, Iâm sorry to read of all that youâre contending with, like dear @Erica says. Wow youâre dealing with a lot. I do hope youâve got loved ones you can talk about all this with? Maybe even a therapist? Of course now you have the forum should you want to offload here! Iâm sorry to read that youâve gone through such intrusive sounding operations too, Erica.
Interested to know youâre taking Besremi, Ellie. Iâve taken daily hydroxyurea since my diagnosis last year. But like you Iâd never heard of these Myeloproliferative neoplasms (MPN) or indeed the Polycythaemia vera (PV) that I was diagnosed with. Quite the crash course in haematology isnât it?!
Sometimes it can seem like Essential thrombocythemia (ET) and Polycythaemia vera (PV) arenât so rare here on the forum, which helps me feel less alone with it all. Hopefully itâll come to be like that for you too.
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Yes, I was thinking maybe when I get better, I could take part in blood cancer awareness in some way. Maybe some funds rasing as thereâs such promising developments in blood cancers treatment.
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For example up to now for me âheavy perimenopausal bleedingâ meant like, your periods are just heavier. Never in a million years I imagined that I can bleed without stopping for almost 2 months, and doctors need to balance trying to stop the bleeding and my Essential thrombocythemia (ET).
When I first mentioned to my doctor that my period doesnât seem to be stopping this month. He became worried and said this can be dangerous with Essential thrombocythemia (ET), I just looked at him and thought âwhat dose he mean? A period?â I didnât have a clueâŚ
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Oh this is so great, Ellie! Funnily enough I felt similarly and was really glad that Blood Cancer UK holds a âwalk of lightâ where we can accept donations and do a sort of sponsored walk. Maybe youâd like to read about that in advance of next yearâs walkâI loved doing it earlier this year: Walk of Light | Blood Cancer UK
Also, MPNVoice has been holding conference-like forums around the UK, but perhaps theyâve ended for the year. I see they have a âLiving With Myeloproliferative neoplasms (MPN) Dayâ patients forum on Saturday 16 November, should you want to attend: MPN Voice Living with MPNs Day â Saturday 16 November 2024, 8.45 am â 4 pm â MPN Voice
I should add, please donât feel obliged to do any of this stuff Iâve linked to. I understand weâre not all as able to use our bodies how we might like. Stuff to keep in mind for when you feel up to it, Iâd say.
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Thank you so much Duncan! This is really good to know!
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Hi Frances, i was diagnosed with Essential thrombocythemia (ET) in march this year, im still finding my way as i honestly do try to keep feelings to myself. My journey so far as been ok sort of. I first commenced on Aspirin, then in may i started Hydroxycarbamide one a day for 5 days, this was then increased to one a day for 6 days a week, i recently had my bloods done and platelets gave gone up, but having had a chest infection and antibiotics the week before may have caused the increase, so will have bloods done again in 3 weeks.
I find this forum to be a comfort on a daily basis, everyone on here understands how we are feeling, when people close to us have no real idea.
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Hi Jules
Weâre all in the same position but here is where you can be open and honest and share how you feel.
Iâm sure we all feel the same.
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