we’ll I had THE meeting with my haematologist yesterday with my son supporting me. Our meeting lasted the best part of 2 hours (!) during which we thrashed out many of the uncomplimentary things I had said about him. It never needed to escalate to the level it did if he had explained that Claire Harrison at a big London hospital can access Azacitidine but at provincial hospitals it is not readily available
The results of my BMB showed additionally acquired mutations ( I’ll let you know exactly what when I get my hands on a copy of my results - now agreed) which are found in high risk myelodysplastic syndrome. To cut a long story short he is adding MDS to my myelofibrosis diagnosis in order to access both drugs (ruxolitinib and Azacitidine) which have been researched to act together better than either individually as soon as I’ve had the surgery to replace my port - scheduled for June 13 th
So a result. We could have got there without the anger and angst if communications had been better I think he took that on board and we have smoothed the path for the future
Best wishes to you all and thank you all for your support, Jan
Written by
beetle
To view profiles and participate in discussions please or .
I am very glad to hear that you worked things out. You proved that assertive patients receive higher quality care. Moreover, this physician learned something that may make him a better doctor. Everyone benefits when patients assert themselves.
Please do let us know what you learn when you see your results and how you are getting on.
What a relief! You’ve shown that good communication with those treating us is vital and when it’s not given proper attention by clinicians the effects on patients can be horrendous. Good on you for finding the strength to push on through.
congratulations on getting the results you wanted. You fought and won. But you shouldn’t have had to experience the stress you went through to get to this point. I hope you’ve recovered from the emotional “battle” with your doctor. You’re strong & powerful. As we say in the U.S., “you rock, Jan!” Katie
Fair play to you for sticking with it Jan, , it's easy to back down especially when you're not perhaps feeling up to tackling confrontation. And I'm pleased things should now be easier going forward however I'm sorry about your additional MDS. Good luck on 13th.
thanks Chris. It has been a pretty stressful few weeks if the truth be told. My son was wonderful at the meeting and picked up on a few things the haematologist said which made it quite clear that he knew exactly what he was talking about
I just see it all as water under the bridge now and although not looking forward to the treatment I’ve fought so hard for if it works for me and extends my life in reasonable health it will have been worth it.
I hope you are doing well. Very best wishes, Jan x
Jan , , I know I haven't been around on here (feel I need to stress 'on here' coz I've certainly been around the block a few times like a clapped out old banger 😃) much of late but I keep reasonably up to speed and always look out for my contemporaries on the Forum such as your good self. . . Sincerely Jan I hope the combination drugs come good for you because nobody is more deserving of a break than you my friend.
thanks for the positive update. The “C” word always wins out….Communication! Well done for standing up to your slightly egotistical sounding haematologist! X
well done it’s all about money . But like my case they never mentioned Clare Harrison existed or any drug options . So I had to hunt all that out myself &?contact her . I cannot believe these people are health providers & don’t get that we are trying to get best treatment for our health 🙈 Julia 👍
or that we talk to each other! His reaction when I mentioned a forum wasn’t good that you are able to find support it was “ well that doesn’t put us in a very good light does it”. He clearly doesn’t understand how others interpret what he says! I’m working on him though!😂
I being a Greek used to thrash out, whenever I felt I was not being taking seriously or was being cheated. Getting older and living in Austria for the last 27 years, I learned to speak slower, lower, clearer and more accented. I also don’t allow someone to cut me off until I’m done. 😉
When the dr told me I had cancer and tried to brush me away after 7minutes, I planted myself in my seat with bolts. I didn’t budge until he explained everything. When I left, I gently told him how his attitude leads to therapeutic failure for most patients. Going out the door, he stopped me and asked me what would I suggest for him. 😂 yay!
Sometimes they need a shaking to remember that they are dealing with a human, a soul and a personality. 🙂
WOW! What a coup! Exclamation points all around!! Like Hunter has always said: Assertive patients get better care. I double, triple the above congratulations. Whew! I repeat: What a coup!
Well done with being assertive! I've had a few of these uncomfortable confrontations with hematologists but these situations are always easier if you bring along a family member or friend. My husband goes to every appt. with me and can recall things that were said that I miss. We are a united front.
Had only one hematologist who refused to let my husband attend the appt. (claimed covid reasons) He ended up being the worst of all of them. Was screaming at me on the phone about getting an iron infusion!! I stuck to my guns with repeating that you never give a PV patient an iron infusion......he just screamed louder! Got rid of him pronto! Remember you are your own best doctor. Best to you! Kerry
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
AML update 
Access to Blood Test results on line.
