OK, I know there is loads of info on here for advice on dealing with the fatigue and general downside of Polycythaemia vera (PV),
But does anyone have any advice on the twitchy, fidgety, restless cannot focus or settle sort of days?
Trying to study is a nightmare of wandering focus, oh look a butterfly, oh that reminds me I need to check this out, OK make a cuppa and try again, oh it’s stopped raining, go for a walk, another cuppa and should be studying but writing this instead 
More leech time on Thursday, but bony aches, nervous energy, serves me right for sleeping for more than three hours at a stretch last night 
So how do you cope with these days?
5 Likes
Hi @clickinhistory I have another blood cancer.
I was diagnosed 20 yrs ago and have never had treatment.
I still cannot read anything that needs concentration and I cannot remember what happened in a previous chapter or episode.
Before diagnosis I was allowed a couple of days off work to study before some exams and I remember so well I just did anything to not study
I went to a drawer and then tidied it up.
I put some of the contents elsewhere and then tidied that drawer…
I clean sheeted the bed and washed the bedding, even the under blankets, then I dusted the room.
Looking out the window is fatal for me, I am so nosey.
I don’t know what the answer is I thought it was just me!!!
As for my fatigue I don’t deal with what stresses me well since my diagnosis, it gets all too much and my fatigue can also be caused by what personally stresses me emotionally, psychologically, practically, medically and physically.
It can come on immediately or it can have a delayed action.
I got to know myself better by keeping a cause and effect diary.
At least you have stopped me taking the Xmas decorations down, thank you!!
I just accept those days and be kind to myself.
I do believe in checking everything out with my medical team.
I hope my ramblings have helped and I hope others can be more help.
4 Likes
If I may be so bold, it sounds a lot like you’re experiencing anxiety, @clickinhistory. I speak from experience, I know it well. The fidgety stuff, the mind wandering… It’s what our minds do of their own accord to help us avoid and defend against stress and it manifests exactly how you describe. I used to think of it like a form of annoying procrastination, as if my mind was distracting me from what I should be doing, but actually I’ve come to pay attention to the stuff my mind wanders off to, and what’s making me fidgety as it usually means I can find the root of what’s making me anxious. Perhaps that sounds about right for you too? I’d say, go with it, notice what’s coming up, are there any themes emerging… I mean, being diagnosed with Polycythaemia vera (PV) and other blood cancers would be enough to distract the most focused of minds! Try not to feel bad about these distractions emerging. Hopefully they’ll guide you to what is going on for you and then you can decide to act on that, or put it down to stress. If you wanted some refocusing exercises that can help reduce anxiety too, please just ask. No shame or judgement here, anxiety is such a bugger!
5 Likes
@Duncan Actually off work so relaxing, it is a strange sensation of tight aching through the arms, tired but energised, tightness of breathing when you wake up.
Yep having Polycythaemia vera (PV) is a mind distraction and when you feel those symptoms, you wonder what it is doing to your body, then you start muttering about when are you going to finally get an idea from the specialists what is the next stage, treatment or whatever.
Divorce paperwork, new driving course, self employed wondering where the next money is coming from, new ideas for where to take the creative business, those are normal, labelled with love and tasked based.
It is the chemical in the biology beyond the mind that is new and unlabelled.
Through a new research scheme in the NHS, I have, thanks to the car crash, a trauma occupational therapist and a psychologist to help to get people back to work after a major A&E admission. They are loving the fact they get a two for one deal with the crash and the cancer
Reading “Lost connections” by Johann Hari at the moment after my recent conversation with the psychologist when we were discussing the loss of historical support systems within society, such as the loss of pubs where conversation rather the how many decibels can you get away with, mattered.
I use breathing and taking the camera out, then music and editing to try and achieve satori and calmness, to separate the mind from the biological, just need to become more regular at doing it.
Highly recommend Klaus Schulze besides Vangelis, Koan or Heilung for a good spiritual and emotional release
4 Likes
I totally agree with what you’ve written - I think anyone being diagnosed with a life-changing illness (even if we feel well most of the time) is going to have a bit of stress and anxiety and it comes out in physical ways too. For me that’s having periods of nervousness/restlessness and usually waking up several times a night/having a busy mind. It is easing as time goes on but I think anxiety is a huge factor of Polycythaemia vera (PV) that we often dismiss or put down to other things.
What’s going on in our minds often starts becoming physical symptoms as well and that is certainly the case with stress/anxiety. I think that when you’re first diagnosed you need to allow time to come to terms with that and accept that you will have periods of anxiety, stress, upset and general not quite feeling right. It’s all part of the new ‘normal’ for those diagnosed and it will take time to truly come to terms with everything. Even when I’ve been feeling OK I’ll suddenly have a day or two when I feel absolutely wretched and be sorry for myself or on ‘high alert’ all day. The main thing is to be kind to yourself and allow yourself to have those ‘off’ days. There is no point rushing the process as it will all take time.
I was diagnosed 10 months ago now and am still trying to get my head around everything and learn more about this condition but I keep reminding myself that it is still only early days and I am sure that things will get easier with time. I try and look to the future when I will know exactly what’s what and will be so au fait with the condition that it doesn’t phase me at all. Fingers crossed!
5 Likes
Oh how great that you’re off work relaxing, @clickinhistory! Long may it last.
That aching you describe reminds me of how my body also ached after taking hydroxyurea for a week or so, and I agree that having introduced the medicine to our systems is bound to create all sorts of chemical reactions internally that we pick up on. I keep note of mine, although like I’ve said before my haematologist thinks I’m “sensitive” to hydroxyurea and not to worry so much. Symptoms did decrease with me to the point where I don’t think I experience any now, or they’re so vague as to be unnoticeable. Hopefully it’ll get like that with you.
I’m sorry to hear of your divorce. That is enough to set someone up with a bunch of difficult feelings! I hope you’re bearing up okay with how it’s going. I can’t help but note that you’re experiencing a lot of loss, what with the divorce, the crash, the diagnosis. Any of these life experiences alone can be enough to cause shock, grief, and even trauma. Please don’t underestimate how much stress you’re under, despite your cheery presentation. It’s to be expected that a lot is going on for you somatically in your body and that it’ll emerge in physical ways. That’s how I realised I had PTSD as I’d buried and denied my stress for so long that it started coming out as terrifying panic attacks and all sorts.
In the spirit of reciprocity for the great music you’ve shared, I wonder if you’d get something from this: https://www.youtube.com/watch?v=qYnA9wWFHLI I first read about the 8-minute version of this piece of music after my panic attacks started as it was apparently written using (then) current research about anxiety attacks and its pace was created to help us to slow down and breathe in sync with it. Breathing mindfully, as you know, is the best way to pacify our sympathetic nervous systems where anxiety can emerge in fight/flight/freeze responses. I’ve never listened to any of their other music, but still put this track on in the background even when I’m not anxious and find myself tuning into its tinkling little beat and calming somewhat. Just my experience—I imagine it might irritate many others!
You’re doing so much good for yourself with art-making, breathing techniques, and being aware of your unconscious processes. If I may say, it seems that writing is a great way to express yourself too—I’m in awe of how you process all this Polycythaemia vera (PV) stuff so openly on here. This sort of free associating is not unlike narrative therapy where writing your own life story can be a way to tolerate the difficulties and incorporate them safely. Sounds like your trauma therapy is going well and is helpful in containing the horrible stuff you’ve been experiencing. Take full advantage of that as I know therapy is not so easy to come by anymore, and certainly not specialised trauma-informed therapy.
2 Likes
@Duncan opps forgot to mention my old faithful car is in for it’s MOT tomorrow too
The music sounded great, not sure ready for the 10 hr sound bath just yet
I have had major life issues in the past, including being homeless in the middle of a rough winter, so in many ways I have been training for this, the universe moves in mysterious ways and all that.
I have always written poems and short stories, they go with the images I take sometimes, part of seeing the world, sometimes differently or just removing the rubbish or expected, such as the language we use in cancer.
As I am not on any drugs beyond the aspirin, I think the symptoms are a reaction to what the cancer is doing to my blood levels, a weather vane to the state of my inner physical health.
I found more than lost with the diagnosis if that makes sense. I got answers to many aspects of my life, relationships, judgement and to have one illness rather than the many that the symptoms were indicating was a major relief.
Yes, I have lost that which was dearest to me and that cancer played such a hidden role in that, it makes me angry, but I try to remember the old Chinese fable about the old farmer, his son, the horses and the army, good luck, bad luck? Who knows?
Sharing my journey on here, it felt right, rather then one of the other forums which were too Top Trumps with their results, my choice of drug is better than yours, I am specialist in the terminology and this is what you should do vibes.
In a world which we are now forced to live in, an unknown one even to the medical world really (see where Polycythaemia vera (PV) is hidden on the Cancer Research website), where we are thrown Greek, Latin, short hand descriptions, numbers and more numbers (right click, copy paste in new tab every few lines to find out what they are talking about because they forgot to actually tell you the patient), I chose to be honest about my human journey into this world, to dance with something that is part of me rather than battle something because a part of society makes it so.
Guess the fidgety part of the cancer wanting to jive when I just want a gentle waltz
Yes, I know I am lucky with the trauma specialists, even if me and the psychologist spend our time talking about beer and bars we have both drank in while living in York in the past, back to the pub being the old place for male therapy through talking.
I discovered music therapy back at school, had an old wing backed rocking chair, a great VZ5000 record player that played both sides of the record and you could repeat the whole album, so many an evening I zoned out to Mike Oldfield or Jean Michelle Jarre or Vangelis’s Heaven and He’ll.
Enjoy the the tinkling of the bells and think of all those angels getting their wings
Not allowed the Norse place name in the Vangelis track but heaven is… pagan lot will be most upset, especially as modern versions of the place are based on a Roman land fill site which just burned forever it seemed to them, where the poor dead and unwanted babies were thrown into these flames, the Norse lot had it as a frozen wasteland, hence they were the original city break/summer holidays in the sun people. Explains a certain Irish based flight company
2 Likes
well that was fun, looking at the £160 mark (with advisories waiting in the wings) for the MOT, but more fun was a room full of nurses and other patients shaking their heads at hhhhhooooowwwwww sssssssssssssssslllllllllllloooooooowwwwwwllllyyyy my blood was coming out in my left arm. I blamed the fact we were telling the trainee about a cats ability to close off a vein out of stubbornness at the vets.
Sister came across in the end, wacked it in the right arm, spoke very sternly to it and away it flowed, much to the amusement of staff and patients.
She then has decided to take charge of my treatment and I am booked back in for two weeks time as my blood level is still well over that magical .45 mark which the specialists wants my blood levels to be, nice of him, I thought, shame no advice on how to get my body to do that.
So the fidgety feeling was the blood pretending to be the M25 at any time of the day
1 Like
Ah so you’re not taking hydroxyurea or other medicines other than aspirin! Sorry I didn’t pick up on that in your posts. If your doctors haven’t prescribed any chemotherapy or other proliferation-slowing medicines yet then you’re in an ideal position to keep doing some great somatic work on your unconscious stuff as the aspirin alone is unlikely to cause any noticeable physical changes, from my experience and understanding of research at least. All the new stuff you’re noticing in yourself is sort of unadulterated by chemotherapy and thus more likely a direct gauge of your thought processes and feelings right now. You have a lot to be processing!
Know what you mean about having to check all the medical jargon for myself. I’m in the process of trying to change my haematologist due to his shocking lack of guidance upon diagnosing me, let alone even alerting me of the potential danger to my husband of my taking hydroxyurea, or its affects on my fertility. Not that I want children but as I was never even given the information in advance, presumably due to ignorant assumptions about my sexuality, then how could I make accurate decisions about treatment? Shocking how we individuals can be treated like mere statistics without any respect for our lived experiences and human needs and wonts.
So in awe of those automatic record players! Had a friend who had one, long after records started getting phased out. I was a child of the late 80s/early 90s and got into music via the radio, local gigs, and CDs, but having travelled a lot in adulthood made me minimise my suitcase and thus I came to rely on digital music. Music has been essential for me alongside my art-making and writing and so I can empathise deeply with how important it can be for many of us.
Sorry to hear about the phlebotomy not going so well at first. I know how that can be! Sometimes it takes an experienced nurse to do the job, I find. Out of interest, if you’d like to share, how long did it take to drain after all? On ‘fast’ days for me a pint of blood can drain in just 15 minutes. When I was really dehydrated (after camping last summer) it took 1.5 hours! Apparently, I was told by a particularly officious phlebotomist, anxiety can cause our veins to tighten up too, slowing the bloodletting. I’m imagining a stern but caring matron-type sorting out your naughty blood flow, slightly scaring it into submission 
Try to be patient with your haematocrit level as it can increase and decrease no matter how hydrated and stress-free we are, rather annoyingly. I try to feel chuffed when mine is within the normal range for non-Polycythaemia vera (PV) folks, even if it’s slightly above that 45 % goal. If it’s in the normalish range then your other blood cells are mostly behaving too, I like to tell myself.
2 Likes
@Duncan just for you and this is without the wonderful speakers that came with it a wonder of it’s time
The Sister was a small lass, but think she rules with an iron glove in a silk one. Right arm flew out while left was clotting up and not going anywhere after 20 minutes. Wouldn’t have minded, but I had upped by hydration levels in the past few days to help. They explained to the trainee that it is to be expected given my condition, that getting the blood out can be a hit and miss affair, got a very nice mince pie as a cheer up with my cup of tea though
A lot of sad afraid people in the room, well till I showed up and caused a stir LOL
I think this is where my view point of seeing the cancer as a form of dance comes in, you know the beat and moves of your own body, its foibles and rhythms, the cancer makes you pay attention and learn new steps, part of you is amplified in strange way.
Be nice if the docs just said, “Its a rare cancer and we are not really sure of how it works and what to do about it”
1 Like
Ha yes that’s the very same record player my friend had! Imagine if CDs hadn’t taken over, audio tech might have carried on advancing along these lines! Thanks for sharing that, @clickinhistory.
Sorry to hear that even your efforts to hydrate didn’t quite go to plan with the bloodletting. My phlebotomy nurses say they use a bigger needle than for simple CBC injections, which might explain why the trainee didn’t quite get it right for you. Not fun being a guinea pig though! Even the best of them mess it up sometimes. The nurse who took my CBC sample that ended up catching the JAK2 mutation is always so gentle and efficient when doing my CBCs, and yet even he managed to cause blood to spurt out once, and it ended up scarring. Slight horror film vibes! I suppose all the ‘needlework’ will eventually scar our injection sites so it’s probably wise to change arms now and then.
Sounds like you’re also a rather lively patient! I often get chatting with my nurses as, frankly, they have given me all my best advice beyond this forum. I think for them their work passes less stressfully when they have friendly patients, and perhaps offsets how grim it can be when we’re stressing out or finding the procedures difficult. There was an older patient behind a curtain during my last phlebotomy and I could hear his nurse (who was also mine that day) calmly advising him to drink more in future as his blood was so painful and difficult to draw and he needed an IV of saline water to even start the process. I bumped into him in the lift afterwards and he looked so withered it was like his skin was crepe paper, poor chap.
But yes, imagine if doctors admitted more of what they don’t know yet?! That reminds me, I need to contact my haematologist!
2 Likes
@Duncan has your haematologist got your number blocked yet?
Sort of a result with the MOT, £117 pass (base fee £40) with a possible risk of £150 advisories in near future, so a suggestion of intervention by skilled types needed sooner than later. Close monitoring on fluid levels and pressures for the car suggested for the next 12 months before further action maybe diagnosed. Come to think of it, the test guy did look like my junior doc!
Please Duncan, I am a shy retiring quiet sort of guy, just wish to read my photography magazine or kindle in peace and quiet while having the attention of the leeches,
I found it amusing that the blood went on strike, a show of sympathy to the cleaners who deserve the 35% pay rises, the bewilderment of the nurses, just made it more fun!
2 Likes
Was going to say the internal workings and need for fluids are probably not too dissimilar between an engine and a human body, but you beat me to it!
Funnily enough, I stopped taking anything to read to my bloodlettings as, not to show off, they typically pass quickly, so I’ll quiz my nurses during that time instead. Got to make the most of face-to-face healthcare!
Let’s hope the various staff on strike get adequate pay rises. It’s a pity they have to in the first place, in my opinion.
4 Likes
@Duncan plan for the worse and enjoy the best, it is the same way with driving long distances, get stuck in a traffic jam and enjoy your book and drink and try not to look too smug as everyone around you is glaring at you for being prepared
Also, I try to use the bus to the hospital, saves on trying to find and pay for a space, plus if it is nice, I can walk back past the supermarket and top up the fluids or calorie count
Just be nice if the medical lot gave some advice besides drink the river dry to try and lower the numbers.
Still not focusing and fidgety with the muscle aches, but not as bad as it was.
Did you get a free haematologists transfer in the end?
2 Likes
Funny you should say that about taking a bus as I do that too—handily there’s a direct bus route from my street to right outside the hospital! Would be silly not to. Then afterwards I potter about a nearby neighbourhood and treat myself to a fancy coffee and a stroll around the cemetery (it’s more scenic than it sounds).
Sorry to hear you’re still not as focused as you’d like, but at least it’s improved a bit. I know the feeling. This time of year always seems like when my motivation grinds to a halt, this year especially. Such is renegotiating life with additional preoccupations. Or perhaps a kind of pre-hibernation. Hopefully those fidgets you’re experiencing calm down or get overtaken by something more pleasant!
Thanks for asking about changing my haematologist. I started the ball rolling and am seeing my family doctor first, who’s in charge of referring me to a new haematologist anyway. She already knows it’s not a great fit between him and me, and mentioned that another patient of hers who sees the same haematologist for a similar reason also finds him cold and outdated. The thing is, he’s quite young! Surely his training is more recent?!
So I’ll email my haematologist this week and query his omissions during my diagnosis appointment. Then we’ll see! I’m very grateful to have the privilege to change doctors at all. Nice to have my judgement trusted by my family doctor in the first place.
2 Likes
@Duncan here is a small clip of all Doctors dream world existence https://youtu.be/oVWjAeAa52o?feature=shared
I know a doc friend years ago said that many docs act to fake it, so but on this face of world weary superiority to hide the fact they are bricking in if they get it wrong.
Getting on the downside of fidgets, could sleep for England, ok only for a few hours at a time, but a success is a success lol
1 Like
Well this week has been the complete opposite, I could sleep for England at the drop of a hat, all I can say is it has been lucky I have been working from home base given the times I have slept in.
Anyone else have weeks like this?
1 Like
Yep, @clickinhistory I could sleep for England this week too.
However I think it is because I am just getting over a chest infection and then the ‘non Covid cough’.
However you could usually prop me up against wall and I could nod off.
I think I was meant to sniggle down and hibernate.
Sweet dreams @clickinhistory
1 Like