Now part of the polycythaemia vera posse

May I ask you, which exercises are you doing? Do you have some professional program with a trainer? I like more dancing (latino), and some easy exercises with this handpan music, its calming mešŸ™‚
Thank you for your kindness and support here, its a big deal :slightly_smiling_face: Now I more calmed , and accept the situation, not so far I developped a new ability to rejoice to communicate with friendly persons , and meet other kind people, to summarize what I have achieved ( one more time, gratefully to this forum) rejoice to simple and small things​:slightly_smiling_face:

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You’re most welcome @NinaSt, it’s lovely to share with you here.

I hike in nature, walk where I live day-to-day, and do a couple of sessions of yoga each week (in front of the TV!). I’m not a gym person but understand others find them and trainers helpful for motivation. I also go to gigs and dance a bit—I’m sure nothing compared to strenuous Latino dancing! Had to google handpan. I love how they sound, what cool instruments to play! I’m also a big fan of psychotherapy which helps me find healthy places for anxiety and other PTSD stuff to go.

I totally agree, this forum is so helpful. Maybe even essential! There are people here who I want to be friends with in real life. So glad to read you’re feeling more calm. I’m sure you know that acceptance can be a big part of processing and learning to live with loss and grief that a Polycythaemia vera (PV) diagnosis can bring up, so that’s a great achievement I’d say! Good stuff. Rejoice in your achievements, what a lovely thought. Thank you for sharing so much @NinaSt, it helps me feel like maybe I’m on the right path too :smiling_face_with_three_hearts:

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@JanetF I once had a ā€˜free’ phlebotomy courtesy of a leech that attached itself to my knee. Didn’t know anything about it until I got home and found my jeans stuck to my leg by the clotted blood.

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Hello there folks, I hope you’re all doing well and continue to do so. When I don’t see posts around the forum from others I know I like to imagine we’re all simply getting on fine—it’s very comforting!

I wonder though if you could spare me a kind thought as I start the process today of diagnosis for another random health concern, thankfully unrelated to Polycythaemia vera (PV).

I should hopefully have results soon, but if I don’t comment for a while please know it’s my introverted self-care process for getting my head around stuff and you’re still in my thoughts. Or perhaps I’ll surprise myself and want to overshare :rofl:

Anyway, rest assured that I’ll be back when I can. In the meantime I’ll be doing my writing and hiking and yoga and making sure to perk up every morning with delicious coffee, as ever!

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Hi Duncan, sorry to hear you may have other health issues, unfortunately our Polycythaemia vera (PV) does not make us immune fron other things. I like to think quiet means all is well too, though we can hardly think differently really. I hope everything goes well for you, if it’s any consolation doctors can sometimes over stress things. In January my doctor seemed convinced I had a serious issue with my prostate but eventually an MRI suggested otherwise. I hope you get the otherwise verdict too. Please try to keep in touch, I’m relatively new on here and am always heartened by your thoughtful comments to me and others. So post as much or as little as you want, but your posts will be welcomed and what’s a bit of over sharing between friends. Take care and we hope to hear from you soon.

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Oh @Duncan another random health concern, I really understand your introverted self care process for getting your head around stuff.
When it feels right you overshare as much as you like, you are a very precious member of our forum.
Do lovely things to try and divert your mind, although in my case my mind can multitask.
Be ever so kind to yourself and I will be thinking about you.

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Thank you so much for your kindly support @Pedro and @Erica. I’m really touched that you reached out, thank you both.

I’m so sorry that you experienced prostate issues @Pedro, I had a nasty UTI just prior to being diagnosed with Polycythaemia vera (PV) and can perhaps appreciate how horribly uncomfortable at best those sort of nether region ailments can be. Uncanny that you should mention your MRI as that’s what I had yesterday. Somehow I meditated through it, but I’m now back to the familiar waiting for results…

Dear @Erica, I trust you know your always kind and thoughtful words have kept me going more than once when I’ve not had the energy myself. Sadly my multitasking is rubbish! But I am taking it easier, I promise. Just back from a stroll to the park for an iced coffee, and am about to make some hearty Moroccan-esque soup with preserved lemons for dinner, so I’m trying to practice what I suggest to others!

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Sorry to hear this @Duncan I hope it all works out ok.

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Hi @Duncan
Sorry you have stuff going on ,
I hope you’re doing okay
Take care

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Hi @Duncan I am glad that you managed to meditate through your MRI, yes, back to the old, all too familiar, waiting game.
Your meditation skills definitely beat my multi tasking skills.
Hearty Moroccan-esque soup with preserved lemons sound very intriguing to me.
I am a carnivore slow cooker whizz kid myself, mainly because of my husbands limited palette.
Yes, take it easier and really look after what your body needs (note to self as well!!)
Isn’t it hard sometimes to practice what we preach !!!
Sun is out so a stroll is in order for me.
Be ever so kind to yourself and enjoy your soup.

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Oh @Pedro you really do give a perfect example example of how all tests are to rule conditions in or out.
It sounds as if your doctor was convinced that you had a serious issue with your prostate but eventually an MRI suggested otherwise, thank goodness.
Look after yourself and take care.

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Hi Erica

I’ve never been in chat rooms or forums before so not sure how it works?

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You did fine @Dean211077 with your other post!!

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You’ve found just the right place @Dean211077. Lots of fellow Myeloproliferative neoplasms (MPN) survivors, specifically those of us diagnosed with Polycythaemia vera (PV), comment here and around the forum. I’ve commented more fully on your other post.

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Some good news! Well it feels like good news. Thought I’d let you know @Erica, @DottieB, @Jonpd, @Pedro and other dear forum family members.

The MRI I had last week confirmed I have a benign brain tumour in my pituitary gland, apparently it’s tiny, and I likely won’t even need any treatment except MRI checkups. I’m being referred onto an endocrinologist that my family doctor knows. It’s a best-case scenario compared to places where my mind spiralled off to, as I’m sure you can imagine!

So it’s yet another random chronic ailment picked up early due to a sense that something was not quite right in my body, plus a trusty blood test. I’m feeling such relief and also a slight bewilderment. How amazing are blood tests and MRIs?! I’m really in awe at the science of it all—preventative medicine and healthcare really is incredible. Haven’t seen my MRI images yet, but am looking forward to that.

Right, I want some fresh air now. Thank you to those who kept me in mind, it’s felt very containing. Onwards!

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Oh @Duncan thank you and thanks goodness for your update and good news although I feel it would be even better not to have any type of brain tumour at all.
Oh, I really do know what you mean by ā€˜another random chronic ailment picked up’, I seem to be desensitised to them now.
As you say how amazing are blood tests and MRI’s.
Enjoy your feelings of relief and just take some time and get some fresh air and come to terms with it all.
Yes, treat yourself, you really deserve it, regroup and what we go through on our emotional rollercoasters
Be ever so kind to and really look after yourself

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Thank you so much for sharing @Duncan. I have been thinking of you these past few weeks. I am glad you have been reassured by the findings. You are always so supportive and understanding to us all and give sensible advice and information. I am sorry you have had the worry of all this. Warm wishes Willow

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Aw thanks @Erica and @Willow, receiving your support is beyond words right now. I know you both know how all this sort of medicalisation can feel dehumanising, so thank you for helping me stay in touch with myself.

Becoming desensitised to it is something I’ll reflect on Erica, perhaps that’s another facet of our psyches that can emerge to protect us at difficult times? Know what you mean about rather not having a brain tumour at all :rofl:

And Willow, funnily enough when I had my MRI I was thinking about your recent endurance of all sorts of hospital stuff that, frankly, would really blast my anxiety beyond any self-regulation. I thought you’d reassure me that I can do this, and it reminded me to try meditating through the MRI. So cool, it really helped. Again, not that I’d recommend needing an MRI to anyone!!!

And so I join the many -ologists gang! Thank goodness for our doctors and other healthcare specialists and this forum of lovely people.

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Wish you patience, more fresh air/walk , and more communication with good people :heart_hands:

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@Duncan very good news. Onwards and upwards.

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