After my infuriating visit to the consultant last week, I got an infuriating letter from them. It has sent me into a fit of rage. Not only is it completely unreadable and lists lots of analysis that was not mentioned to me or explained, but the opposite word to the correct one has been used - which I think is how we got to the opposite and incorrect outcome of the interferon comment.
The kicker is the final sentence says, 'Therefore,?????????? I do not think will be a good option for her.'
I have not added in these ?s, I think the ?s is meant to be the name of a drug.
I have been waiting for a call from my consultant for three days now to actually explain my results, and I don't think its coming.
I have no idea how to navigate the NHS to get what i need. I know day to day at the moment i'm 32 and my numbers in terms of platelets are ok, but this bungle of communication does not make me feel cared for or even able to speak to someone. I've never been told how to actually book an appointment with the Macmillan nurse and she has already said she can't talk to me about the medical results and symptoms and also seems to not really want to be involved with me either as she is busy with proper cancer, not what she called it but very much how it felt. I would be fine with this if I actually got clear guidance and updates on my tests.
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Sorry to hear you are having these problems. If you call the main hospital number and ask for Patient Advice Liaison Service they should be able to help you.
They deal with complaints etc and should also be able to advise on other contacts etc such as Macmillian.
Sounds like it is time to fire the current consultant and make sure you move to a MPN Specialist. There are excellent providers and MPN clinics in the NHS. Time to get to one. Many from the NHS can speak to the compassionate and high-quality care they receive in these settings. Here is the list just in case you have not seen it recently. mpnforum.com/list-hem./
Meanwhite, a note regarding interferon and fibrosis. I won't go into all the literature. Here is one good starting point you may find of interest. "Interferon has even been shown to reverse bone marrow fibrosis in some patients with MF." silvermpncenter.weill.corne...
Wishing you speedy access to the care you deserve.
Definitely time to find an MPN specialist. At 32, it is likely, pending an MPN specialist consult, that if cytoreduction is needed (and that is a big IF) then perhaps interferons might be best path. Ask for a referral to an MPN specialist as soon as you can - it is amazing the level of medical gaslighting.
definitely sounds like time to switch consultants! I can honestly say that with several moves during 28 years with MPN that I have never come across a MacMillan nurse with anything but a totally supportive attitude either. Maybe ask your GP or consultant to refer you to Prof Claire Harrison at Guy’s in London. I see her once a year and she liaises with my consultant about my treatment.
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