Now part of the polycythaemia vera posse

@Duncan - I was recently diagnosed with Polycythaemia vera (PV) myself back in April. I had experienced mild symptoms like headaches, fatigue, blurred vision etc. for 6 weeks prior to diagnosis and was quite relieved to have a reason for why all of these things were happening, although it was quite a shock at the same time.

I completely understand how you’re feeling as I, and I’m sure most on this page, have felt exactly the same, I just turned 47 this year and feel way too young to have a cancer diagnosis! I have found out during this journey that my stepfather’s brother also has this condition and was diagnosed at 44 - he is now 81! I found this quite comforting to know when I was first diagnosed.

My best advice is to take each day as it comes. There’s a lot to learn (I’m still learning myself) and you will definitely have ups and downs emotionally whilst you are processing. Stay positive and try not to dwell too much on the diagnosis, but do allow yourself those times when you feel sad or upset, it’s all part of the journey so just be kind to yourself.

Like you, I feel lucky compared to others, but it is still quite overwhelming. If anything my diagnosis has reinforced my feeling that life is for living and to make the most of it!

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Hey there @CarolineL , so sorry to hear that you live with Polycythaemia vera (PV) as well. And you’re another recent diagnosee! I’m glad your symptoms haven’t been any worse, although even those can be enough to derail one’s day, I bet. So fascinating about your stepfather’s brother having had this for so long, which really is a comfort so thank you for that. My best friend’s brother has a friend with a similar MPN who was also reassured with a prognosis of a long ‘normal’ life, whatever normal is now that we all have these blood disorders. So I’m beginning to internalise my good fortune and privilege at catching this early and for not suffering like so many of our fellow survivors have and continue to. I’m also really feeling guilt for the same reasons which my personal therapy is helping with—another privilege I know others can’t access for many reasons. Weirdly I am feeling more of a sense of acceptance of all this sudden adaptation that’s sort of dropped on me. Being an anxious type I can overthink stuff, but perhaps living with this chronic disorder will help me be a little more trusting of my instincts in the here and now :face_with_monocle: For example, I intended to go for a solstice hike today but woke up feeling too knackered to motivate myself out of the house. And that’s fine! I’ve enjoyed the beautiful light anyway, bypassed a bout of anxiety for not doing what I’d planned, and may still have energy to go down to the beach later anyway where the sunset is bound to lovely! So you’re totally right about taking each day as it comes and thank you for reminding me of that simple way of being. I hope you continue to be okay with all this stuff, @CarolineL, and thank you for reaching out.

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Hi.
Im not sure if im posting to the right place everytime i post…
My husband was diagnosed with Polycythaemia vera (PV) a year ago.he is taking hydroxuea daily and blood thinners.
He just had a full blood count done yesterday as he is not feeling well at all.he is so tired, pains in his heels, hands and joints.this is his 2nd week of work to miss.his head is sore to touch.
I am just wondering if someone out there is suffering as much as he is

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Thanks so much @Duncan I have another blood cancer, but I have learnt so much from your experiences and philosophy to life…
I am picturing your time on your beach, so wonderful and restorative and it’s free.
Look after yourself.

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Hi @Doyler I hope someone will be able to help with their experiences.
It is so difficult being a family member as
I am glad to see you said that your husband has had a full blood test yesterday.
Perhaps now is the time for your husband to write down all his symptoms, the severity of them and impact on his lifestyle.
Then he can really show his medical person how he is and ask if this is normal and what can be done.
Please let us know how your husband gets on and really look after yourselves.

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Hi @Doyler,
Thank you so much for sharing this. I can see Erica has given you some brilliant support and certainly in terms of his next best steps, it is important to know that he has had his bloods checked. This will help eliminate & understand perhaps why your husband is feeling so poorly.

It is also important that if your husband has a haematology team, he should relay his symptoms to them.
Please do know that if you or your husband would like to talk things through, our helpline is very much here for you- 0808 2080 888.

Best Wishes, Lauran

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I thought I was doing really well with this but I’ve noticed a big dip in my energy and my body shifting. The only thing I can think of is the heat!!!

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Hey there @Doyler, so sorry to hear about your husband’s symptoms and that you are also going through them vicariously with him. While I can’t really offer any suggestions regarding the Polycythaemia vera (PV)-specific discomfort he is going through as I am at such an early stage with my own diagnosis, I can recommend wearing comfy sandals indoors to alleviate heel and foot pain. I used to get painful plantar fasciitis in the heels and arches of both feet and the only thing that helped, other than getting off my feet for ages, is wearing recovery slides like they’re slippers at home in between hiking. I wear Birkenstocks made from EVA, but there’s a brand called OOFOS which are meant to be good too. Pricy but worth it if they totally get rid of foot pain! For you I’d recommend doing some breathing exercises to help get a sense of how fast these worries are making you breathe, and then you can begin to notice how calm you can feel after breathing more slowly and mindfully, taking deep breaths and holding them momentarily before breathing out again. It may be your husband experiencing the Polycythaemia vera (PV) but you are also living with it affecting you and your body. I hope you get some respite from all this worry!

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Aw @Erica , that’s rather humbling coming from a pro survivor such as yourself! Actually didn’t make it outside yesterday after all, except for taking the dog out for his ablutions, but whatever! Still got some vitamin D into my eyeballs, that’ll do! But yes, I count my blessings to have beautiful nature nearby ready for me to treat myself to it.

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Ugh heat really is bad for us. I hope you’ve found ways to remain cool, or less hot at least @Rammie18. I have been known to wear one of those freezable neckerchiefs indoors on hot days as my head cools down faster when my neck isn’t so warm. I also just close the blinds on hot days to reflect more heat away, which seems so counterintuitive in grey old UK, but these hot days are only going to get more frequent!

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Having my first venesection AKA mediaeval bloodletting tomorrow and am wondering what others in hindsight would have liked to know or do before their first time? I’m keeping hydrated in advance and taking headphones in case I need to pacify myself with music… or drown out other people :rofl: Also going to treat myself to coffee and doughnuts after.

Been taking Hydrea 500 mg for a few weeks now and wow the fatigue is no joke, even at this low dosage. The fatigue sort of grew over a fortnight and I’ve been pretty wiped out since. Slightly foggy thinking too. Really annoying as I prefer to be active and sometimes now I just can’t motivate myself to get out and about. Kind of going with the flow of it for now and still hiking regardless, albeit shorter routes.

Also read a research meta-analysis about cancer-related fatigue (see link below) which suggests frequent exercise including yoga/tai chi/qigong, bright light therapy, and ginseng have some positive results on CRF. So I’ve been making sure to go outside every morning to blast my eyes with morning light, quite the wake-up! Anyone have suggestions about using ginseng?

Cancer-Related Fatigue: Causes and Current Treatment Options Cancer-Related Fatigue: Causes and Current Treatment Options - PMC

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Can’t really help on this one @Duncan except with fatigue and just feeling rotten I find wearing day clothes and not jim jams helps, it changes mindset.
I also really believe that with fatigue and feeling rotten sometimes I need to sleep/rest/nap, but other times It’s fresh air and appropriate exercise (walking for me) helps.
I am also a Pilates girl.
I will be thinking of you today, please report back.
Look after yourself and water and headphones sound good to me.

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Thank you for thinking of me, @Erica! I thought of you too while it was happening and it felt very supportive. So I didn’t need headphones after all as it passed so quickly and my phlebotomist was a pleasure to talk with while they explained the bloodletting process and answered my millions of questions. Such a relief to know I can tolerate it as I learnt years ago to never watch needles being injected as it makes me instantly nauseous! Then I was sort of fascinated by the medicalisation of the process, especially such an ancient procedure as phlebotomy. Now it’ll be repeated fortnightly as necessary to see how my haematocrit measurement and platelet levels improve…

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That’s great to hear!

The nurses really do make the experience a better one. Whenever I’m told I need to have one I’m like great, means I get to catch up with the nurses! :slight_smile:

Thanks for posting and hearing it all went ok, really does fill one of the purposes of the forum

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Yes, @Duncan I don’t watch the needles being injected into me either.
Also a great big shout out for our caring nurses that literally make or break an experience for us.
Take care

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Aw thanks @Rammie18, makes me smile to imagine you chinwagging with your nurses! Hopefully I’ll get to be as friendly with mine. The one who took my blood the other day was like the epitome of what a great medic should be and it’s really helped me feel like I’ll be able to tolerate the slightly repetitive grim stuff like bloodletting!

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So, so true about nurses. I’m in awe of how much practical and emotional work they do in and around the diagnostic stuff the doctors get to analyse. So far I’ve encountered 100% amazing, skilled nurses and I’ve made sure to tell them how well they’ve treated me. Glad that injection ‘trick’ helps you too!

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Howdy @CarolineL, wondering how you’ve been, fellow PVer?

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Whoa @Rammie18, just read that you also had a heart attack! I’m so sorry to hear that. I survived one a decade ago, and am now wondering if it was related to undiagnosed Polycythaemia vera (PV) as it was apparently due to a clot… I remember all the medicines I was on at the time really spaced me out and affected my moods. Hopefully you’re way beyond the heart attack now. What a vile double-whammy of health issues!

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Hey there I was diagnosed approx 6 years ago still here and I’m 70 lol

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