Hi my name is Teresa , I’m new here I have recently been diagnosed with MPN they thought it was ET from my blood count being high , but after a bone marrow biopsy they said I had to much fibrosis on my bone marrow to be ET but my bloods do not match up to me having MF so they have told me they are treating me for ET unclassified but at higher risk of progressing to MF I’m am only on aspirin at the moment just very scared not sure what to think thank you hope it makes sense very hard to explain
Hi @Teresa25 a great big welcome you must be in shock and very scared and confused having arrived on this emotional rollercoaster that speaks a different language.
You are now part of our forum family and I am sure others will share their experiences.
Perhaps now is the time to write down your fears, questions, practicalities so it is ready to ask your CSN (Clinical Support Nurse), if you have one or your GP/consultant.
You are now part of our forum family and if you would like to talk to someone the Blood Cancer UK support line is there for you.
Do you have and support from family and friends?
Perhaps the best thing you can do is be really kind to yourself and please let us know how you get on.
Thank you so much it’s so good to know you have people you can talk to going through the same thing I have a very supportive family and my husband is very good but they are finding it all hard to understand thank you so much for the advice I have wrote down questions I want to ask my consultant so hopefully get some answers when I see her xx
Hello Teresa25. It’s great that you have found Blood Cancer UK and the forum, to make contact for extra support for your new diagnosis. It will definitely take time for you and your family to understand what this new diagnosis means and what future support you may need. You could ask at your hospital or Consultant, if they have support groups or other patients with a similar diagnosis, to be a ‘buddy’ for you. Often with MPN patients they have oral treatments (tablets) that are taken at home, so don’t always get the chance to talk to others and have peer support. Your CNS or Keyworker may also be able to offer advice and guidance, again, ask your Consultant when you have your next appointment, to introduce you to the nursing team. Having a CNS (Clinical Nurse Specialist) contact going forward is always helpful, and often reassuring. Take good care of yourself. Best Wishes.
Hi @Teresa25 I have been thinking about you and I wondered how you are doing now?
Hi I’m ok thank you just feeling a bit low I had spleen scan on Tuesday and not sure what it means the nurse said it’s normal high haven’t a clue what that means said it’s a bit bulky but she said they class 15 to 16 high and mine is 14 so just very very worried and confused xx
Oh, @Teresa25 I am not surprised that you are worried and confused and sometimes medical people are so used to talking their medical language they do not appreciate what a few words out of context can do to to their patients.
However it does show that they are being thorough.
Hopefully you will get some more information soon.
In the meantime it might help to write down all those questions, thoughts and fears that whizz into your mind. No question is a silly question.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses in case they can add anything. Our forum is here for you to say how it really is for you and the Blood Cancer UK support line is there if you would like to talk to someone.
Please let us know how you get on
The main thing is that you are kind to yourself and look after yourself
Thank you for sharing everything with us. I am so pleased you have found us & it’s great to hear that you have some lovely support in your family.
It sounds like you are still going through a really worrying time and still somewhat in limbo of what your results may mean for you. May i ask have you been given a follow up appointment at all?
If not hopefully you will receive one soon to discuss the ultrasound findings and also give you the opportunity to ask any additional questions that you may have.
The term enlarged spleen is often variably defined, but consultants and radiologists do work with parameters by which they would compare a ‘normal’ spleen size to and also take into consideration your diagnosis, health background, current symptoms, blood results etc.
Essentially they will use clinical judgement and individual circumstances to make the best decisions for you and your condition.
However I greatly appreciate, this does not take from the fact that you will understandably feel really worried and anxious until you are able to have further conversations, so please do know that should you wish to talk anything through with us, we are always only ever a phone call away for you & your husband- 0808 2080 888.
Take Care, Lauran
Thank you lauran for the advice it’s so good to know I’m not on my own yes I have an appointment on 9 th September so nervous when going to appointments xx
Thanks for coming back to me. I hope you’re doing okay today?
That is great you have an appointment scheduled and it is really understandable that you will feel nervous going into appointments. The unknown is really hard to manage and it can certainly be a roller-coaster of emotions. Are you able to take someone with you to the next appointment for support?
Also don’t be afraid to ask any questions that you have as often it can feel somewhat tome pressured and you can easily become distracted by information presented to you on the day.
No question is a silly one and if it helps, often a little note pad of queries you want to understand more can be helpful on the day to take along.
Also do know that we are always here for your for should you wish to talk anything through before your appointment- 0808 2080 888.
Take Care, Lauran
Hi Lauran I’m feeling better today yes my husband comes to all my appointments as I never take anything in then I get home and worry and think the worse my husband says I have to think positive I always think negative which is not a good thing but finding things quite hard at the moment
Excellent idea taking someone with you. In the early days, my wife always came with me and as her doctoral research more than half a century ago concerned childhood leukaemia, she knew much of the language.
Sadly, her Alzheimers now means that I’m trying to remember for her. Whatever you do, though, try not to worry!
Hi @Teresa25 I have been thinking of you and I wondered how your appointment on Sept 9th went I know how nervous you get when going to appointments.
Yes, it is a very good idea to take your husband with you to take notes.
By the way I think many of us get a yukky nervous feeling before and during medical appointments.
Look after yourselves