Numbers or words after a doctors visit?

OK, tomorrow morning finally back at the haematologists after 3 months, despite the nurse trying to get me in earlier.
I know because of the car crash and that the diagnosis for Polycythaemia vera (PV) came about from it, the need for a clear space between the last leech visit to thin the blood along with the aspirin daily to get a clear picture of what the rampant mutation is up to. (Not what I hoped for watching Tomorrow’s Child years ago or Mutant X with the gene thing, sort of hoped for the M&S superpower and got a Trotter’s market stall knock off instead :slight_smile: )
Now, as you do, you look at the various forums and chats on the subject of cancer (harder when you have a rare one) and one thing I have come to realise is on here, the threads are more about the person and how they feel, are coping rather than various versions of basically Top Trumps of cancer numbers.
I understand the numbers are a scientific measurement of the state of our health for the medics, that our treatments are based upon the worst version Football Results slot, though it might bring a smile if they were read in the presenter style voice, Platelets 4 V Lipids 2 etc.
Guess this harks back to the language of cancer thread, do you present to the world your cancer via a list of blood parts and numbers or do you present to the world about how it feels to have those numbers?
Do you share the numbers or just say good, bad or the teacher’s report card fav, could do better?
Just a mental niggle for the time when I should be in bed, but sleep is not happening


Interesting post…

Words give meaning of the numbers but I believe that words are often based around ones interpretation of them.

Good for some is different from person to person. Good is great for some but satisfactory for others.

Numbers are kinda the same when just alone which is why comparison and targets are needed to base a conclusion from. Is 40 old? Well to a 3 year old yes, to a 90 year old no!

This maybe coming from the maths teacher side of me but every-time I go for a medical appointment I want to know the numbers and also my Haematologists opinion and expertise of what it means in the grand scheme of things.

Should anything happen I don’t want to put all my eggs in one basket as like in most professions people change and are replaced so it’s best to be as knowledgeable where you can as it’s all relative to the one important factor… you!


Really interesting post @clickinhistory

For me it really depends on you as an individual as well as who you are talking to. In the earlier years of my diagnosis I was all about the numbers. I found understanding those and as much as I could about the illness helped me come to terms with my situation - and probably feel an element of control. But I found explaining that to people got complicated - so I kept the numbers for me and adjusted the narrative depending on who I was talking to and what they wanted to know.

Let us know how you get on at your appointment :slightly_smiling_face:


I find people understand numbers better than feelings
I update family and friends with numbers then they ask how I’m feeling
I think they feel they can celebrate with me when I’m telling them how low they are
They also understand when they rise that I’m on a relapse path
I like numbers too they give me control of my myeloma :slight_smile:

Now work is a different matter all they are interested in is capability


Oh @clickinhistory I loved your posting and I have a smile on my face, it is definitely a post from someone to whom sleep is not happening!!!
I liked your football analogy.
I don’t know but perhaps you have a very visual mind as I do and obviously the same sense of humour.
To answer your question personally I think you present to the world how it feels to have the diagnosis and what thoughts you have.
Perhaps most of us have been to a presentation where all we hear is figures and see graphs. I just switch off and write a shopping list in my mind.
To conclude it depends on the person and relationship but I keep it very simple.
I got in a right mess trying to explain to work what I did not understand myself.
Oh, yes, ‘could do better’, but now I realise 7 out of 10 is good enough.
Please do let us know how you get on tomorrow in ‘layman’s’ terms!!!
Take it steady


@Rammie18 a friend years ago told me that her Maths Uni Prof said that numbers were the building blocks of the universe, till it was pointed out they are just a label to try and measure things or guess at things, theoretical maths is a posh phrase for guess and well it worked for the apple hitting Newton didn’t it :wink:
As the old shepherd once said to the monk sent by the king to measure his land and chattel when asked how many sheep were in his flock " many and a lot"
The monk went “No, how many sheep are in this flock?”
The shepherd pointed across the valley and up the hillsides,
“I started counting once, but they kept moving”
The monk looked at the random dots of white spread like snow across the landscape.
“Wow! that is a lot”
The shepherd laughed and said “not as many as yesterday, they had a feast up at the big house”


@MaggieLT think I am approaching it as a Plimsoll line versus the water mark, if I can see where the sea is to how high I am floating, it will be good enough for me :wink:


Ok for the tick toc guys at the starting gates, in best BBC Football results voice:
Science Haematocrit .45 v My Body .58 away win
HB 194 awaiting pools panel ruling

To those of normal disposition, numbers are up, a quick chat with the trainee and then the big guy and off you toddle to the leeches and book yourself in the first week of Jan for leeches as well, toodle pip and see you in 8 weeks.

One slightly milky almost tea drink and a few ginger nuts later, one pint or 500mls in new money of dark red stuff in the back of the net and off for an early bath.

Because of the impact of the car crash on an already enlarged spleen, guess the guys in the suits want to check there is no damage as I seem to be producing the red stuff better than an EU wine lake :slight_smile:


Sorry to hear your numbers are up, @clickinhistory. I’m sure you know they can vary at the best of times and that stress and other real life complications can alter how our bodies process our blood disorders and thus affect test results.

I’m definitely someone who is up in my feelings a lot, but I find the CBC test results reassuring as they’re unbiased. I can chart my progress, at any time of day, based on the automated test results and get a sense of what might be happening in my body. Sometimes I can gauge whether I’ll need phlebotomy before my CBC results come back as my body already feels off or I’m more sluggish than usual, kind of reminding me of the worst of the fatigue I’d feel after starting hydroxyurea.

Since diagnosis I’ve not found anyone wants to know the minutiae of my test results! Well, maybe my husband. But I think it’s reassuring for loved ones to know when my haematocrit is near my goal without them needing figures and percentages and so on. In the meantime I can share how I feel about it all, which my loved ones are accustomed to anyway. And of course our physical health can be influenced by our emotional health and vice versa so I’d say it’s good to keep abreast of how we feel. Leave the statistics to the doctors, I reckon!


Oh, and did your doctors tell you that our spleens can sometimes start producing blood?! My haematologist mentioned that during my diagnosis. Hence why spleens can become enlarged in those of us with MPNs. My body’s various functions never cease to amaze me… and slightly gross me out!


@Duncan forgot to say, the only reason I know those numbers is I photographed the sheet the leeches department were sent on the day, the actual docs just said they were higher than they would like.
Feeling like the manager in the dugout listening to the 50000 fans talking about the team and ignoring the fact you are the one in charge :wink:
Just by my symptoms, I knew my levels were high, so the blood test results were no surprise.
Good luck with your next CBC


Sorry to hear that you have to resort to taking photos of your own test results to have a record of them, that seems rather exclusionary of you, the person who is giving them permission to test your blood?! It’s obviously not my place to say but I’m surprised they aren’t more forthcoming with your results. Having access to my CBC results going back to before my diagnosis means I can take an active role in my own healthcare—I wish we all could.

Thanks for the good luck, @clickinhistory. My CBC shows my haematocrit has decreased again and is still in the normal range, but is still slightly above the 45 % goal so in I go for phlebotomy. Hopefully my favourite nurses will be on shift today and they’ve got the arm warmer ready!