Newbie seeking help and advice

Hi. I’m Olive and have been diagnosed with JAK 2 positive with MPN about 4 years ago
I was told I made too many platelets but nothing else and went for regular hospital visits for monitoring.
I only found out very recently what it was by receiving a copy of a letter to my GP which stated the full story. Up
until now I don’t feel any different but I have other health problems that have very similar symptoms. I haven’t been given any support suggestions such as organisations and Sony have family support

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Hi there @Olive21 a big, warm welcome to our forum :slight_smile: I’m Su, one of the Support Services Officer here at Blood Cancer UK. I hope you are doing okay? it sounds like it has been a really difficult time for you, only recently finding out more about your condition? Please feel free to talk through any worries and concerns on here :+1:

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Hi Olive, welcome to our community forum where we support each other, which I have found especially useful at these scary times. I can share my thoughts and feelings on this site and know people will really understand as perhaps family and friends cannot. I have also found that often it does not matter which blood cancer we have we seem to share the same fears, thoughts, feelings, questions and practicalities. I have also found that the Blood Cancer UK website is full of information and personal stories, it also gives details of their brilliant support line. Many of us also seem to have other health conditions as well which makes symptoms confusing. Take care and I look forward to hearing more about you, take care and stay safe.

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Hi @Olive21 we’re pleased you’ve joined our online community! I do hope you’re doing OK. Would it be helpful if we sent you some sources of support for people with MPNs? Just let me know if so!

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Hi Alice
That would be very kind thankyou :blush:

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Thankyou all for your replies, they’re very welcoming.
I’m a little confused, so advice again if you can.
Although I have E.T. I don’t feel that unwell. However I also have M.E./CFS and fibromyalgia, so there are a number of symptoms the same I’m only taking aspirin at night be moment. I feel as though it’s not serious. Is this common?

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I have had family members who don’t believe I have the condition because I look well and am not on any treatment. Can I ask what it is like for others and do you need help, how do you get help, and I don’t really understand the platelets results in my tests. I recently had a blood test and was told it was normal???

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@Olive21 it’s totally understandable that you’re feeling confused and that you have these questions, I imagine it’s a lot to get your head around!

Firstly, do you have a clinical nurse specialist or key worker? If you don’t have the contact details of this member of your treatment team, I’d really encourage you to give your hospital a call to find out the details. Clinical nurse specialists/key workers are really good points of contact to have as you can get in touch with them in between appointments if you have any questions or concerns. They’re equipped with the details of your individual circumstances and medical history so should be able to talk things through with you and offer tailored advice.

Have you seen the Blood Cancer UK booklet on MPNs @Olive21? It has general information around MPNs and has a whole section on ET. You can find the online version, here - MPN booklet, but if you’d like to order a hard copy free of charge feel free to order it here - here Or of course you can email us at support@bloodcancer.org.uk :slight_smile:

Also @Olive21, I wonder if you have heard of the organisation ‘MPN voice’? They have a Buddy programme, where they match people up with others who have an MPN and have been through a similar experience. They also hold forums for anyone affected by MPNs, throughout the year in different areas of the UK - https://www.mpnvoice.org.uk/get-involved/patients-forums.aspx They’re postponed for now due to the current situation but you might want to check in at a later date to see if any are of interest to you? These sorts of forums can be really good opportunities to meet and chat to others with MPNs, and hear from experts in the field about living with and coping with blood cancer, and also, new research and trials etc.

They also have these blogs written by people with ET that you might feel it’s helpful to read through? -

If you want to talk anything through with us, do remember we are only a phone call or an email away! Alice

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Hi Olive, I think your feelings are quite natural and in my case exactly the same for a very long while. I was working when I was diagnosed and how could I explain to work what I did not understand myself. Logically I think we all thought that you get diagnosed with a condition, get treatment, you are cured and everything goes back to normal. Blood cancers are often more illogical and my medical team take lots of other symptoms, tests, other conditions and other things into assessing the way forward. Watch and wait or active monitoring, as it sounds we are both on, is watching the progress of the condition and in my mind the longer I go without treatment the better. Perhaps other conditions with the same symptoms also confuse matters.Conditions that cannot be seen are so difficult and you and your family cannot see what is going on inside you. I had some counselling via my medical team that helped me a lot. I get so cross when people say ‘you do look well’ as I now realise it is to make them feel better too. We are the ones that really understand so please keep posting and take care and stay safe.

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That’s been really helpful, thankyou you both so much.
By accident I found out some info on YouTube of all places! I thought it just showed music and ‘how to’ videos.

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I now don’t have any family contact except for my adult children. I have 3 health conditions that are ‘hidden’ and I’ve had one for about 20 years. I’ve been called lazy, exaggerating how bad my conditions are and more recently, an attention seeker. I have had ET for 4 years and only recently told my extended family as I anticipated their reaction. Sadly I was proved right and decided to cut myself off. I feel like a weight has been lifted and I don’t have to keep proving anything to anyone. Strangely I feel happier than I’ve been for years. I also now have a great partner who is extremely supportive.

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Hi Olive. Welcome to this patients forum. I am so sorry to hear how your family have failed to understand all you are coping with. I have a myeloproliferative disorder that was diagnosed in 1992 so I have been living with it for many years. It must be very hard for you to have the other health conditions also. It is terrible to be called an attention seeker. One of the hardest things I have had to cope with is feeling misunderstood and people saying how well I look when actually they have no idea how fatigued I am feeling and the effort it has taken for me to get out and see them - that is prior to the lockdown, of course. Hidden conditions are so hard to live with and if we had our leg in plaster, or something, we would get lots of sympathy! I hope you can take comfort from knowing I do understand in many ways how hard it is for you. It’s good to hear you have such a supportive partner. Take care and let us know how you are doing. Willow

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Thankyou Willow, it’s been really helpful joining the forum: I have used the example of saying that you wouldn’t expect me to run a marathon with a broken leg!

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Oh @Olive21 I imagine it was so disappointing to not feel supported and understood by your family, I’m so sorry to hear that you had to go through that.
It’s really good to hear you have a supportive partner and that you’re finding this forum supportive :slight_smile:

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