Well, went to the hospital today to see my Aldi doc.
Given a heads up he was running a tad behind in his very full clinic by the mini leech station who have the machine that reads blood writing.
40 minutes later of people watching and enjoying an older guy challenging the one nurse on duty about the wait while she was trying to get a guy in a wheelchair to the jockey club weigh in station, a woman who had been popping in and out of the area, called my name.
Introduced herself as one of Haematology Specialist Nurses who was trying to help thin out the crowd.
Well a good chin wag later, the following came out,
1: my blood count is of the mule variety, stubborn and refusing to budge.
2: the slow crawl to chemical biological tools has begun.
3: more sessions with the ward of the leech sisters.
4: an apology from the nurse that no one had been in touch, discussed my case or provided me with information on Polycythaemia vera (PV) and my journey forwards.
5: they are really interested in @BloodCancerUK-SupportTeam updates to itching guidance.
6: Intrigued by patients challenging the “warfare” language within cancer. She had done 15 years on the chemo ward, did not agree with the introduction of the bell and agrees on the mental impact such language can have on patients, especially those who are terminal.
So two more sessions of feeding the leeches in exchange for mugs of tea before seeing the specialist again.
Wiped out afterwards, but an interesting visit.
Oh @clickinhistory medical appointments wipe me out too.
An interesting experience today.
Your good chin wag with the haematology specialist nurse sounds interesting and that they were very approachable.
@Erica got more out of her in fifteen minutes than the head honcho in all our meetings, she even understood the guidebook is a bit thin when it comes to Polycythaemia vera (PV) but she did say the firm behind Ruxolitinib have been seeing new directions in it’s treatment.
Even the leech sisters admitted they do not have a guidance plan regarding treating the Polycythaemia vera (PV) with venesections and what targets they are to look for while balancing the health of the patient and their iron levels.
Ha “leech sisters” ha ha ha. Brings to mind the Bene Gesserit, but less psychic.
Sounds like treatments are working, but not enough to bring down the blood cell numbers? That’s frustrating. I wonder if your spleen and other blood-producing bodily regions are making blood too and messing with the overall counts?
That’s great to receive an apology at least. Don’t know about you but for me having doubts and worries affirmed by the people causing them, or at least not making them easier, can really help me stop feeling it’s something I’ve done wrong. Will they be in touch in future? Chase them up and name names if they let it slip again!
Started my own dance (©️ @clickinhistory 2024) with will I/won’t I need phlebotomy this month. Time to zen out and do my breathing and distracting activities after my CBC earlier while I await the haematocrit result and whether it’s high enough to require bloodletting 
@Duncan I have a shinny new card with names and phone number on 
I think, given your recent role as overseas scientific reporter, you might enjoy this brief read while you await your lottery results
Ooh thank you, love a good dry read to keep my mind off terrifying blood cancer!!!
@Duncan you will be pleased to read us Polycythaemia vera (PV) lot are the last few users of this long trade, nice to know we are guardians of past arts
Wow since at least 1927 bloodletting has been the approved procedure for Polycythaemia vera (PV) in the UK?! Amazing to think that this bloody disorder has been recognised for so long and still has the same basic treatment. Sometimes the first idea is the best 
Can I please ask , have just had first watch and wait bloods after diagnosis
They were done on the 28th feb and posted off to the lab as per system my active monitoring uses
I was just wondering how long they take for results usually, we are waiting on immunoglobulin results apparently
Any advice greatly appreciated
Sorry to hijack this wasn’t sure where to ask
Hello @DottieB, sounds like you’ve been waiting quite a while for those blood test results. I get the impression that it’s a bit random as to how long it takes for results to come back, depending on how close you live to the lab where the blood gets tested. Sorry not to be able to help more. Would it worth gently nagging the surgery who did the tests to find out when you’ll likely receive the immunoglobulin results?
Hi @DottieB I have found blood test results do vary.
I will copy your post to the Blood Cancer UK nurses in case they can share their experiences @BloodCancerUK_Nurses.
Perhaps others can share their experiences.
I think it is reasonable if the result doesn’t come back after the date they are expected that you chase it
Look after yourself
Hi @Erica and @Duncan
Hope you’re both okay
Thank you both for replying, I really appreciate it
I will give it a couple more days and chase them up
I’m good, thank you for asking @DottieB. Got great CBC test results yesterday which is a relief. Sorry not to be able to offer a more definitive response regarding your test, I know the frustration and anxiety that can arise when awaiting these things. In fact, I’d say, the waiting is often worse for me than the symptoms of the bloody cancer! We often need to be our own best advocate, which sometimes includes asking our specialists for clarity. How are you getting on since diagnosis?
Ahh am pleased to hear that @Duncan, glad you had good news .
Please don’t apologise, was helpful to hear it’s variable .
The anxiety is real isn’t it , normally I am quite a calm person but the waiting is making me a bit more anxious than I can ever remember being . I have been up and down really since diagnosis, but am generally okay thanks
Thank you again for the helpful response and the kindness
Take care
@DottieB where do you get your bloods done? I either get them counted before seeing the Aldi Doc by the mini leeches on the day or done while the ward of the leech sisters do them while they cox a pint of blood out of me.
I know every one has their own way of dealing with it, but my way is, the numbers mean nothing to me, either high, low or Ok, but it seems to be something the medical lot like to look at. I just go by how I feel within myself and how the Polycythaemia vera (PV) has been and is affecting me mentally and physically.
This time the Sister actually took notes on that part of my dance, not just looking at the musical score
@Duncan pools panel result came good or the $50 tip to the nurse to trump up the numbers work 
Hi @clickinhistory ,
Hope you’re okay
I had them taken at the hospital but they have to be posted to the lab , this is the way they actively monitor in my area .Then if there is an issue I will have a haematology appointment.
I think this is where a lot of the anxiety lies , it all feels a little convoluted and round the houses
I think though the going by how you feel in yourself is a really good idea as you know yourself best and no numbers are going to change that
Thank you for the wise words, take care
Ha it’s like you saw the receipt for my CBC yesterday!
I’m lucky that my health insurance organisation (kind of akin to the NHS but not yet national) has a lab downtown at my family doctor’s office and if I get there early enough my results are posted to my online account that afternoon. That helps to reduce my anxiety as I can tolerate half a day of waiting. Then if my results show my haematocrit is above 45 % I know I’ll need phlebotomy that week. Not this week though 
@DottieB look at it this way, you know you have a cancer, you know how it makes you feel on a day to day basis. Those numbers are a picture taken at a random point in time. The only thing that matters is how you are feeling and coping. You have no control over the numbers, the way they are read is down to the personal view of your docs.
So you can choose to get stressed over those numbers or just let the docs deal with that side and focus on your personal dance with your cancer.
I have chosen not to let those numbers worry me, the hospital has the tools if they need it, I have the day to day living to focus on.
The last two nights I have fallen asleep on the bed fully clothed with a blanket over me waking up to the usual suspects of Polycythaemia vera (PV) symptoms. Knowing my numbers is not going to change that.
I have the answer to my symptoms, it is my Polycythaemia vera (PV), worrying about numbers is not going to change that.
It might be worth having @BloodCancerUK-SupportTeam doing some field study work on the blood testing options across the country, as it seems my hospital is better set up to get the results straight away rather than posting to a lab and slowing down response times and the inherent risk of clot and stroke in the delay. .