Hi @Johnbuckland, thanks for asking, my bloods are due April.
A bit better news so I’m feeling relieved. My cns has said my platelets have moved to over a 100 but I’m to stop my hydroxycardmide for a week. Give my bloods a chance to catch up. I must admit I didn’t sleep well last night with the worry. Still all’s well as they say so keep calm and carry on
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I am glad you are feeling relieved @Johnbuckland.
I hope you get a better nights sleep tonight.
Please let us know how you are doing and how your next tests go.
Take care and stay safe.
Can anyone else relate to @Johnbuckland story?
I hate the night before any appointment! Glad its over now and the news was a bit more positive. Keep posting and let us know how you are feeling.
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Just a small update on my combination of Thrombocythemia with prostate cancer; PSA number has now gone worryingly high so have opted for Radiotherapy starting this week. In conversation with one of the UK MPN academics, was warned last time that the Hydroxycarbamide I’ve been taking can make the radiotherapy more aggressive, which is definitely not something to risk. Interestingly, found from the literature that HC has been trialled as an adjunct to increase the effectiveness of RT for several cancers. So in discussion with haematology I’m stopping the HC tomorrow, but having weekly blood tests to monitor the platelets.
An interesting journey! Though it would be nice NOT to be on it!
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Hi @DickM - Yes - I’m sure you would rather be on another journey- hopefully you can plan an extra special one for next year! It’s great you have done your research and it sounds as though you have a really good medical team around you. So, when does your radiotherapy start? How are you feeling in yourself? You need to make sure your make sure you take good care of yourself. 
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@DickM wishing you all the very best as you start Radiotherapy this week. Please do give us a call if you want to chat anything through. Are you feeling okay?
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Thanks for good wishes, Nichola75! Treatment starts Thursday, every weekday for a month. What is slightly frustrating is that at present, there are almost zero physical symptoms and I feel fine physically, so this may be the third instance for me of going into hospital feeling fine and coming out feeling s**t! Survived the previous two, so let’s hope third time is also lucky.
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That is very frustrating!!! Keeping fingers crossed for third time lucky. Let us know how you get on
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Hi @DickM, going into hospital twice and coming out feeling s**t really does not seem fair so let’s hope it does not happen again.
So treatment is starting Thursday and will be every weekday for a month. Take it steady and we are here for you, please update us when you feel like it, we are here for you and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk
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Hello all.
I’m new to here. I found out last year whilst attending my pre op that I was jak2 positive and had ET… Needless to say I’ve not had my op yet as the surgeon advised he would not operate until my platelets were under control… It’s taken a year but I’m back on the list again… A positive in all of this… I still don’t know how I’m supposed to think or feel about things I just think it’s another illness to add to what I have already… Everyone around me is worried. What annoys me is my sister feels sorry for me and I tell my mum all the time I don’t need that. I don’t want people feeling sorry for me. I try to stay positive about being poorly but it’s hard sometimes. I no longer work due to my back issue hence the op. I have other problems too so this is something else which I also found out I’ve had for at least 7 years now possibly longer they just don’t have my records from when I moved… Sorry I’m rambling a bit but I guess someone will understand where I’m coming from. My family and partner try but they’re not quite getting it. I’m so tired all the time no amount sleep helps me I know it’s a combination of meds and this. I’m breathless my back prevents me from walking far but I have to walk everyday as I’m really high risk of a blood clot sometimes I feel like I’m banging my head against a wall with things…
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Hi @ells, a great big welcome to our support forum. One of the advantages of this forum is that you never have to apologise for rambling or moaning.
Gosh you have had a lot going on and Covid times as well.
I remember when I was first diagnosed that I was in shock and my fears, thoughts and emotions were all over the place for a long time and you have reminded me that everything people said or did was wrong in my eyes, then someone said to me that nobody knows what to do or say.
I have found that it is people on here that really understand how I am feeling and what I am going through, my husband just goes around with his head in the sand not wanting to talk about my medical issues and other people just want to try and make me (or themselves) feel better. My pet hate is someone saying ‘oh you do look well’ when I am really struggling.
I have curvature of my spine and osteoporosis, I have fractured and crumbled rather a lot of vertebrae and I know I have to exercise (walk and pilates) but not to the extent that I facture anything, it is a fine line isn’t it.
With Covid I am finding that medical appointments are coming through for right in the future.
We are all here to support each other and if you would like to talk you can contact the wonderful Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
I look forward to hearing more from you.
Nice to meet you @Ells. I think we’re all entitled to a ramble - I do it on here quite often. But you have so much going on and I thinks it’s really good to get it off your chest. @Erica gives you really good advice and use the forum and the support line as you need. It can be hard managing others emotions as well as your own.
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Just to let people know - We’ve published this document for people with MPNs to share with their GPs if they’re still struggling to get on to the shielding list (and therefore being prioritised for the vaccine right now). https://media.bloodcancer.org.uk/documents/GP_letter_for_MPN_patients.pdf
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Hi Willow,
I have myleofibrosis and know what you mean about people saying “oh you look great” especially when you feel rubbish and put on a false smile so people think you are ok, the only ones who know how you are feeling are the ones really close, my husband can usually tell when Im needing a transfusion or am really fatigued. Hope you can keep your smile on,
Take care, Carol
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Thank you @ladicaz for your understanding and good wishes. Even before my myelofibrosis diagnosis, my upbringing was one where true feelings were never spoken about and we were expected to wear the ‘happy’ mask all the time. It has taken me years with the help of an excellent Therapist to realise that I don’t have to wear a smile all the time so I am trying to be more open and real with those I trust. It’s okay not to be okay all the time! Warm wishes, Willow X
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Hi @Willow it sounds as if we both had the same upbringing.
I still think my smiley mask is my default setting, I think it is ingrained in me that if I am not smiley or say how I am really feeling that I will not be liked or loved.
Perhaps it is only with people on our forum or who have a cancer or similar condition that really understand.
Very warm wishes @Willow xxx
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