Thank you everyone for your support. I think the fact that they were so blasé about the procedure made the experience worse. No real communication, downplaying the effects of it.
Sigh.
Hopefully next week with sedation will help, I just hope I don’t need to have any more after this. It’s to confirm essential thrombocythemia, I have the JAK2 mutation and or course the high platelets. Just a very unpleasant hurdle to get over for the diagnosis to be confirmed.
Expecting to be given interferon shortly, as per haem consultant.
Thanks again all, will let you know how I get on next week 
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Good afternoon Victoria,
With regard to your biopsy. Have you thought about submitting feedback to your Health Authority, I suggest this as your consent may not have been meaningfully maintained during your biopsy. Consent is not a signature on a piece of paper but should be an on going process involving meaningful dialogue and reassessment when circumstances significantly change. Your escalation of pain should have triggered a reassessment.
You do not need to write to the Health Board but you can telephone the feedback and complaints department and they will pass on your feedback to the relevant department.
To prepare for your next biopsy, have you seen my Bone Marrow Biopsy - Patient Request Note, it’s at the beginning of this thread, just scroll up? Also, there are distraction techniques, DuncanB uses deep breathing techniques, a friend of mine found a stress ball really good. You can also take your own music in or maybe they could put the radio on for you.
Kind regards
Mel
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Good afternoon Ceri,
Thank you for your lovely message. Not sure what I would have done if it wasn’t for the people on this forum.
To change the subject, I have found that here in Scotland, not sure about England, Wales and NI, there is no Standard Operating Procedure for a Bone Marrow Biopsy and certainly no guidance or standards to inform the clinicians should the biopsy be technically difficult. I was wondering who I could contact at Blood Cancer UK to see if they would be in a position to try to improve the procedure by working with Haematologists to create guidance or standards for clinicians for difficult biopsies?
Kind regards
Melanie
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Hello @meljarv, what a good question, I’m not sure who would be best to talk to. Are you happy to leave it with me whilst I do some scouting?
And it’s always a real highlight of my day/week to read about the impact this community can have. Thank you!
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Good evening Ceri,
Yes, I am happy to leave this with you to find someone that I can direct my questions to.
I feel that much can be improved with this procedure particularly when biopsies and aspirates are difficult. If the person is text book then all is fine, its when its not and I think the experts need to get together and discuss a way forward and produce guidelines.
I think it is also very important for the mental health of the clinicians who perform these biopsies, which I think is overlooked. I don’t think any of them enjoy causing horrendous pain and I think it must affect them physiologically as well as patients.
Kind regards
Melanie
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Oh my @DuncanB, I just saw that you’ve had 10 BMBs?! Let’s hope you won’t need another, I think you’ve had your fair share by now! I dare not ask how many of yours were challenging, but I do wish there was an easier, less intrusive way for the testing to be done.
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Yes quite a few @Duncan
The first one was hard but after that got much better.
Think it’s the shock and the unknown that makes the first one difficult.
Got to the Nurse Specialist who does the BMBs is brilliant
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Hello @meljarv, I just wanted to let you know that myself and the nurses are workong on finding you the right contact. We’ve put out a couple of feelers, and will likely get back to you properly next week - I hope that’s okay 
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Hi Ceri,
Yes that’s great. Thank you for your help.
kind regards
Melanie
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Hi DuncanB,
How are you? I hope all is going really well for you. I am much better now so thank you for messaging me, you really helped. I finally have a meeting with the area health board on Wednesday so hope to get some answers, probably not all but hope I will finally be able to put all this upset behind me.
Can I just ask you a question?
As your BMB’s were quite painful, did you ever asked if the aspirate was good quality or were they dilute, not representative?
No need to answer if you don’t want to.
kind regards
Mel
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Have to say @DuncanB, I went into mine blissfully unaware of worst case scenarios and so when the specialist nurse was carefully explaining risks and aims I was feeling so self-conscious about them digging around in my lower back/upper bottom that I think it distracted me from the body horror of it all 
Hi @meljarv
I found the first one painful but not unbearable.
After that they were all good apart from the 15 seconds or so when getting the trephine sample.
They always let me know what the samples were like both the aspirate and trephine.
As my condition was Myelofibrosis it was sometimes difficult to get great readings on the trephine samples as the fibrosis causes scarring.
Hope that helps 
Hi DuncanB,
thank you, I have patchy mild fibrosis so if the needle placement is in the fibrosis area then that would explain why mine were dilute and not useful.
I am on a charge now to improve the biopsies, I think National guidance is required for clinicians for difficult biopsies. Will probably take me a few years but little and often letters is my plan.
Mel
Mel