Also, ha ha ha “just in case the Buddhists have it right and I have to come back again…” Very wise friend! I’m more of a Taoist sort of follow the path of least resistance type of person. Perish the thought of having to come back all over again!
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@Duncan we had our best friend who introduced us read a Tao quote at our wedding, “Life is more friendly with two” 
AA Milne’s alto ego Mr W Pooh Bear esq You will know the book 
As for language, got a copy of the clinic letter to my old docs, what is the definition of well? @LauranBloodCancerUK perhaps a better question is how do you get the docs to actually listen to what you really saying. As I was not well.
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I totally do know what book you mean! That’s about as far as I got with reading religious texts
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The last few weeks have been a hard rehearsal session in this dance with Polycythaemia vera (PV). Symptoms and work are partners that seem intent in leading and cranking out German techno industrial free form heavy metal jazz to drown out everything else out.
The dance card was full of 90% plus of all the Polycythaemia vera (PV) symptoms and this mind and body has felt like a 1920’s dance marathon entrant.
Now I know what is happening and more importantly why, I realise that it becomes easier to flow with what ever music is playing, to stop trying to be the wall flower at the school dance, but to let it happen.
No battle cry, but more of a rebel yell, no army marching, but a silent disco with everyone finding their own space to move in, being the leaf on the surface of a flooded river than the creature hugging the rock.
Physically and mentally, the need to surrender to the flow of my own body has been a test, talking to others in a language free of the cliché media tag lines, has also been hard, because others have grown up with those cliché’s.
This is my dance with Polycythaemia vera (PV), the sheet music branded by science, but the score is my own inner music. Just be nice if this cancer decided some easy listening or ambient music was on the play list for a change of pace.
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A big yes to finding the flow easier, and yes to it becoming accompanied more by a gentler kind of music! Beautiful writing, thank you @clickinhistory.
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@Duncan seeing the head honcho this afternoon, hopefully I get the nurse instead. Tired of the drummer lead music and not listening to the emotive melodies in my dealings with him.
First time my divorce lawyer has seen me on a bad day, today, she realised the difference Polycythaemia vera (PV) has on you, from the mind to the body in action. Seeing her reaction to a version of me that is me and not me made me think of the how this “best cancer to get”, creates an insidious cover song of the person we are without us realising. Explains why I am in a divorce rather than with the person who shared a life with me.
Also realised I was angry with the new t-shirt logos from Blood cancer, the generation to beat cancer, this aggressive tub thumping play to the media trained public, back to the drum again.
Cancer is as old as time as my great(x1,000,000) uncle Trex said in his bones, it is like trying to beat the wind from blowing. We can only learn how to bend it, capture it’s energy and use it for our own benefits.
Curing a natural reaction to our own bodies internal make up is a huge step in medical understanding, but the “cure” is only as good as the sheet it is written on.
Could they “cure or negate” my cancer? I would be there trying to get back some of the person I used to be, but the journey of the cancer is always in me, a whitewash of history.
I walked the Walk of Light to hope that research finds not only the hope, but for a better way to be found in helping those of us who find that nature has taken an interest in the functioning of our body.
It is like having to listen to the house or car driver who insists on sharing the repetitive tinny thumping of a drum or base note loudly, especially when the weather is nice. A guest conductor who insists on their music rather than playing to the strengths of the house orchestra.
Polycythaemia vera (PV) becomes a jarring discord in life.
It can’t be beaten, only managed, so how does that match the banner tag lines fed to the media? Or to those whose cancer will consume them?
Music is a personal question of taste, but with cancer sometimes comes the none choice of music we have to listen to.
Just really tired of the drummer thinking they are the band and only the band right now.
Well this reply went somewhere different to what I was going to write.
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Sounds like a rather packed day for emotive appointments, dear @clickinhistory. It’s afternoon there now so I’m wondering if you did see the haematologist or nurse, but I’m keeping my fingers crossed it’s the nurse!
I chose not to get the Walk Of Light merch and then realised they didn’t ship it out here anyway, but it would be hard to wear the clothes and have all those blood cancer logos inviting strangers to perhaps offer the usual types of comments.
It is angering, living between the diagnostic statistics and lived reality of Polycythaemia vera (PV) and I would say be angry! I mean, acknowledge it, express it like you do, get it out of yourself by noting it… The stuff you’re living through is bound to make you feel angry, but the tricky part for me is externalising it without it messily flooding out.
Once the mess of it all is out in front of you then you can take a look at which parts you want to think about. Put the rest aside for another time. Reflect on the tolerable parts and maybe you’ll find space to go back to the other messier bits that keep coming back to you. But there’s no hurry. After all, we get to live with this stuff rather than die from it as our good haematologists tend to tell us!
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@Duncan that is if we don’t get killed from being in a fight with all those who peeve us off when Polycythaemia vera (PV) is enforcing our intolerance of other people’s mess ups or attitudes
Got to see the top guy and I went on the front foot given the list of symptoms and side effects over the last few weeks.
The result of which is:
No more bloods for at least a month, upping my aspirin to 300mg, just forgot to tell me only available at the hospital, duh and he is putting my case before the board to get me put on Ruxolitinib.
And this is with my red barons down below170 and the Greek guy levels down to .51.
As he said, the numbers have an interesting relationship to symptoms and sometimes have no correlation to the effect the cancer is having on our bodies.
Which is why I always choose to ignore the numbers and sites where people are trying to Top Trump each other with the numbers and focus on the effect the cancer is having on me.
This none relationship between cancer and the spot check numbers, speaks a lot about how little we still know about this cancer and how is affects our bodies.
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@clickinhistory - you are most eloquent in your posts and I enjoy reading them 
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Know what you mean. I’m sure you can imagine the number of times I nearly sent various furious letters to my former haematologist! Maybe I should publish them, “Things I Wish My Blood Doctor Actually Knew” or some politely angry haiku comparing changing doctors to the dropping blossom that gets trodden into the ground or something.
So you’ll have a break from phlebotomy which will free up some time and be less gory. Never asked but I’m hoping you never came away from bloodlettings with bruised arms. My time before last left me with shocking inner elbow bruising which needed covering up as it looked like a different kind of needle mark 
How do you feel about possibly starting ruxolitinib? It does sound like the most effective treatment if symptoms fit its diagnostic criteria, as in intolerance to hydroxyurea or neutropenia brought on by other treatments. If it’s not too much information right now, I took some notes about ruxolitinib here and here; “Ruxolitinib treatment is more effective at relieving fatigue and achieving overall benefits than hydroxyurea or interferon. It’s also better for complete response and event-free survival from thrombosis, haemorrhage, transformation (from one cancer to another), and death.”
But it sounds like your haematocrit is so close to the normal range! And your platelets too if I’m reading your numbers correctly. Great stuff! Those weekly bloodlettings seem to have helped, as they’re meant to. Have your specialists said that the aim is to bring you off phlebotomy altogether? I was surprised when my new doctor said that was the aim for me. I won’t grumble, it’s bloody expensive to have monthly phlebotomy here, and that’s when subsidised with Obamacare!
I think you’re wise to gauge how you’re doing by how you feel rather than simply comparing blood test results. I mean, one person’s great results can be terrifying for others. It’s all relative to our own experiences with living through this ourselves.
Now time to rest and don’t forget your savoury treat 
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Clickinhistory so sorry to see that you are having a hard time at the moment. It was good that you got to see someone who took the time to listen to you. Wishing you good luck with your case being put before the board. Look after yourself and as Duncan said enjoy a treat.
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@PollyVera thank you
@Duncan no doubt a by line as “Slightly annoyed of San Francisco” has a good a ring as “Mr Angry from Tunbridge Wells” did in the Telegraph when you send your letters to Polycythaemia vera (PV) Dancers Weekly Gazette
The weird thing was the arm they took the small sample for the blood count would look like I had lost a fight with the bruising, the arm missing Tony Hannock’s measure, hardly anything at all!
I use Weleda afterwards to try and stop it looking like I had been on the Led Zep/Rolling Stone tours
@Liz59 thanks, now in limbo land for four weeks and was that rushed because I was working away, I missed my treat 
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Oh @Duncan just in case you are too young to know Tony Hannock
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Ha yes I could share my unsent letters somewhere… I’m waiting till I can edit them into a version that will help my former doctor to benefit others so no one else has to experience his poor care!
And yes it is weird how the blood test/phlebotomy bruising can be so variable. I’ve only had 3 occasions where it needed hiding afterwards, and twice was from a basic CBC blood draw with the small needles. Love Weleda stuff, hard to get over here. I use CBD lotion on my bruising, and aloe vera gel to soothe it.
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“A pint?!” Oh yes, it’s still a pint, even in the metric parts of the world! He is a bit before my time but still funny decades later, thank you!
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clickinhistory being in limbo is tough but hopefully you will have a solution at the end. Sorry you missed your treat as you were rushed .
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@Duncan thought you would enjoy a humorous insight into Polycythaemia vera (PV) medical procedures
“Memories of an Overseas Correspondent” “My Polycythaemia vera (PV) journey via tofu and beer” usual 15% fee for the marketing
With a lexicon of better words to use in cancer than the armed forces versions as a prologue perhaps?
@Liz59 first upgrade of aspirin this morning, 75 to 300 in one swallow does not a summer make Lidl chocolate du pain with strong coffee sat in the sunshine as a treat this morning instead
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Ha yes it is a bit like marketing, all this terminology we need to become au fait with to be able to sprinkle into polite conversation!
Hope the change in aspirin dosage is uneventful, @clickinhistory. Imagine how thin your blood will become!
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@Duncan best thing is no real info from the doc again, just we are giving your body a rest and upping your dosage. I feel that now I have had a sudden drop in my count, they are hoping the larger dose keeps the red barons flowing through the sky rather than being stuck in Dubai airport (Current references please note )
No mention of side effects, but bleeding and tummy issues are listed when you read the leaflet, after photographing it so you can actually read it on a computer screen.
Oh and went a saw the Sisters of the leech ward and they had not been informed of the change of plan in my treatment. Nothing in my notes or on screen.
Oh polite conversation, you mean like “go live a normal life”?
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clickinhistory I hope you have no side effects from the increased aspirin. Sunshine here in Dublin this weekend too. Glad that you got to enjoy a treat while sitting in the sun. One of lifes mysteries the tiny print that comes with medication.
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