It’s been a while since I posted on here. I was diagnosed with Essential thrombocythemia (ET), in March last year, went o to Hydroxycarbamide in May 2024. Platelets came slowly down with one or two increases in the hydroxy, but have never been below 645. In July I suffered a stroke, I am now off work, can use my left hand minimally, and have to use a walking stick and a wheelchair fir long distances. Suddenly haematology have increased my hydroxy three times since tge stroke and I’m having blood tests every two to three weeks. I feel as though these increases should have been made sooner rather than after I have suffered this stroke.
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Hello @jules64
Thank you for posting again in the forum, its lovely tear hear from you again
My heart goes out to you, reading your circumstance, it must be a very difficult time for you.
I’ve asked one of our @BloodCancerUK_Nurses to respond to you as your question is one of a medical nature.
Do take good care of yourself
Mike
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Hi @jules64.
It’s good to hear from you.
It sounds like it’s been a really difficult few months and it must be extremely difficult to adjust since your stroke.
Have you been able to discuss your thoughts around whether this should have been increased earlier? I know I drove myself crazy with questions I had following a certain part of my treatment. I was able to make an appointment and discuss these concerns with my consultant. Is this something you think might help? Are your team open to discussing it?
Sending lots of love x
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I have discussed the issue with my haematology nurse, but she was reluctant to make any real commitment and was quite dismissive. I just find it irritating that they are now keeping a closer eye on what’s happening.
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I understand that. You can always contact PALs if you want to discuss your concerns further.
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Hello @jules64
Thank you for your post.
We are so sorry to hear of your diagnosis of Essential thrombocythemia (ET) and that you have suffered a stroke.
We can imagine this was an upsetting time for you.
Could we ask if you have expressed this concern to your haematology team and/ or clinical nurse specialist to see if they can provide you with information around the decisions regarding your medication?
If you would like to talk about this at all, please get in touch on 0808 2080 888.
Warm wishes,
Emma (support services nurse)
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Hi @jules64
Sorry to hear that the team are not being proactive regarding your concern.
As Nichola has kindly mentioned, we would advise informing the Patient Advice and Liaison service if you are unhappy with your care or feel there are matters that need to be resolved, as well as feeding back/ discussing with your team further if you felt comfortable to do so. Information on your local PALS and how to contact them can be found via What is PALS (Patient Advice and Liaison Service)? - NHS
Take care,
Emma (Support Services Nurse)
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I feel happier that they seem to be taking things more serious, but this should not have happened in the first place. Im not in a position mentally to be taking things further at the moment.
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Hello there @jules64, I just wanted to pop in to say how sorry I am to read about that stroke and its aftermath. I’m really glad you’re still with us! But that doesn’t help with what you’re now living with. I’d be really bloody angry, I hope you’re letting yourself feel it all. Please don’t blame yourself.
My hydroxyurea dosage for Polycythaemia vera (PV) changed gradually over 2 years while my body got used to it slowly, rather than starting at a stronger dosage which I imagine would have been quite a physical shock, being as it’s a form of chemotherapy. Perhaps your dose was lower at first to allow your body to grow accustomed to any changes it caused?
It’s reassuring you’re being tested frequently now, but it doesn’t take away the stroke, nor that your treatment should have pre-empted it all. May I ask if you have support at hand for now, in case you need it? Do please consider calling the lovely nurses at Blood Cancer UK, I’m sure they can listen keenly and support you in tolerating these changes you’re adapting to.
Anyway, PALS is there should you want to take things further in regards your NHS treatment. Have you tried writing an angry letter to your team? You don’t have to send it of course but sometimes it helps me to let off steam that way too! I wrote quite the missive to my first rubbish haematologist which helped a lot. Take care @jules64.
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Thank you to you all for your responses, I needed to get things off my chest and it has helped, to be able to discuss this with others, rather than my husband who has been my rock and superstar, he has looked after me and kept me going. It’s a slow journey but I’m sure I will be fine. I will keep in touch on here and log my progress. Thank you for being here.
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Hi @jules64 I find it helps to just type it on our support forum too. It sort of breaks the cycle of it going round and round in my head.
Yes, please do keep posting and be very kind to yourself.
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Just had another set of results this week and platelets have finally come down to 599, still high but moving in the right direction. If only the after effects of the stroke would do the same. Thanks everyone for your support. Hope everyone has had a nice Christmas 
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