Hi @ Erica,
I’m with you, I’ll be watching on iPlayer too.
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@Duncan 500ml or 1 pint in old money donated to the incinerator, flowed well as I walked in to get it pumping.
Had a quick look and still at .56 and 189 for the Greek guy of medicine and the little red baron squadron at the last one two weeks ago, so as the nurse said, they are a bit mule like in not moving 
Enjoy the celestial dragon eating the rice cake.
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Ha you have quite the descriptive turn of phrase, dear @clickinhistory! I was saying to my other half how it’s a pity I can’t donate/sell all my discarded blood! Presumably it can be cleaned like other donated blood, or maybe the chemotherapy can’t be removed altogether 
So your readings are similar to the last time? Sounds good to me—rather blood like that than thicker still. Wonder what might help bring your haematocrit down even further?
I’m patiently awaiting my CBC results before I can plan around phlebotomy or not on Wednesday. I was thinking how having the sessions booked for a few months in advance helps alleviate a lot the anxiety I would likely feel otherwise, and then when I don’t need phlebotomy the nurses and appointment become free for others (and I save the cost of the bloodletting).
Noticed that my CBC paperwork, like the sticky labels I get given at appointments, is still registered with my former rubbish haematologist so I’ll need to get that changed. Don’t want him to get any credit, nor do I want to keep seeing his name!
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Here’s Teddy and the eclipse just before totality—a mere 35 % on this side of America, but beautiful nonetheless. The bay became a little quieter like the wildlife was wondering what was going on!
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A couple of shots from around 2015 when had the dragon eating the rice cake here in the UK, the clouds made a great prop. Sunshine? Pah!
Off to see top blood guy next week, hopefully more info than normal or better still I get the nurse again. He is knows what he wants to put me on, but protocol says he has to use another one first, so I feel he hopes the leeches work enough till the protocol changes.
Have fun forging the sticky labels
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Whoa these are amazing!!! You have a steadier hand than I! It was weird seeing a daytime eclipse, but then I suppose had we been properly in its path it would have looked more like nighttime. I’ll always remember my first eclipse up Hay Bluff in Wales really weirding me out, thinking those sorts of skyward alignments only happened in films like 2001!
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That’s great that you get to see a specialist next week. Hopefully the nurse! Told my new haematologist about my lovely phlebotomy nurses and of course he knows my favourite ones as they all work in the same hospital ward. Do you find yours are pretty forthcoming with answers when you take questions in with you? I hope the treatment you receive is to your liking and works. Feels like I’m finally settling into taking hydroxyurea, and since I was recently reassured of its efficacy and long-term safety I’m going to try harder to let go of my chemotherapy anxieties 
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My dratted haematocrit is back up to 46.9 % so in I go again for phlebotomy on Wednesday. At least I’ll get to see my lovely nurses… and the doughnuts I’ll shove in my face after! 
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Oh, @Duncan baa humbug that you have to get your bloods done again, but aren’t we lucky to have such lovely nurses.
We really deserve a doughnut sometimes, don’t we.
I love Teddy I hope it’s paws covered their eyes.
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Absolutely! I feel relieved to know what to expect when seeing my nurses and it’s now weirdly reassuring to know my new haematologist will be just down the corridor!
Teddy enjoyed his little walk beside the bay and then slept all day, perhaps dreaming of being a full-sized dog that can reach his human’s food 
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Hi all
My Dad (early 60’s) was diagnosed with Polycythaemia vera (PV) about a month ago. I am really grateful that he has shared this with my family and I (mid 30’s), and is engaging in treatment. He’s taking Aspirin everyday, drinking lots of water, has had four venesections and has just started taking Hydroxycarbimide. He’s always been tired and is more tired of late, going to bed at 8:30pm these last few days. I’m quite scared really. I know he’s likely to live a normal lifespan, but can’t help but worry about his quality of life. Is it normal to experience a good handful of the side effects listed as 1/10 or more than 1/10? have you as patients found a way to enjoy life? I want to know what to expect as much as possible because the unknown scares me, and how best to support him.
@Duncan I am not sure if I am posting in the right place, do let me know if this message is better off somewhere else.
thanks,
daughter of
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Aww @adultdaughterof, what a lovely caring message. Welcome to the forum, I’m glad your dad has you looking out for him. Please feel free to post anywhere you like. This thread has become quite the hang for folks with experiences of Polycythaemia vera (PV) (and its Myeloproliferative neoplasms (MPN) relatives) so I’m glad you found it.
Firstly, I’d say have a read of the Blood Cancer UK information about PV and MPNs. It’s researched really thoroughly and specialist nurses and others with lived experiences of Polycythaemia vera (PV) are here on the forum to answer any questions you and your dad may have. We’re also here to support you with all these strong emotions that understandably come up. Maybe try to avoid randomly googling Polycythaemia vera (PV) as there’s so much nonsense out there! Stick to blood cancer organisations like this one.
Sounds like your dad is having the same exact treatments as me. Just had phlebotomy 9 actually! Mine were fortnightly originally and then monthly and now as needed, which seems to be about every other month. Initially phlebotomy is likely to be more often to bring down your dad’s haematocrit faster (as in, helping make his blood thinner and thus easier to flow around his body) than the hydroxyurea alone. Eventually the chemotherapy will be the main treatment for disrupting the gene mutation that causes all the bonus blood production.
So I imagine the diagnosis and starting treatments are adding to your dad’s tiredness. Something like 80 % of us will experience cancer-related fatigue due to the medicines and cancers affecting our blood production at its source, mostly our pelvic bones. This fatigue is no joke! For me it felt bone-deep, like I just could not find the energy to do even basic things. Your dad would likely benefit from most support now, help with doing tiring things like food preparation and domestic stuff as standing around can be hard work. It felt almost disabling for me initially after diagnosis last year but has eased up as my body got used to treatment. Lots of rest and making sure to drink lots and eating when he feels like it will help him stay healthy while his body adjusts.
I’d say try to channel your worry into supporting your dad practically right now. He may not ask for help but just give it! My other half took over domestic chores for a month or two and it really helped me learn to rest when I needed and then I could go back to whatever it was I’d got too fatigued to do. Rest and resume, as a fellow survivor on here calls it.
Something that helps keep me feeling optimistic is that hydroxyurea, despite being chemotherapy, has decades of research showing how effective and relatively non-toxic it is to those of us taking it. It’s been the main treatment for kids with sickle cell anaemia for so long and yet research shows they haven’t grown up to have a greater incidence of other cancers. While we have a slightly raised chance of Polycythaemia vera (PV) transforming into other forms of MPNs and of developing skin cancers, these are minimal. Your dad will need to be more careful in the sun and wear sun lotion every time he goes out. I use mineral-based ones which work best.
For what it’s worth, I’m considered a young survivor and I’ve been told my life will not be shortened by Polycythaemia vera (PV). I’m more likely to die with Polycythaemia vera (PV) than from it. When you or your dad feel down about his diagnosis it’s honestly worth remembering that we are likely to live a normal length of life with just some slight adaptations. Polycythaemia vera (PV) is chronic and there’s currently no remission or cure but we can live with it and function pretty normally.
Please do keep posting, it’s so sweet that you care so much for your dad! Maybe he could join the forum too, it’s a friendly place and there are many of us here who know exactly what he’s going through and living with. He’s not alone and neither are you, @adultdaughterof.
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Hi @adultdaughterof and I am so glad that you have posted.
You really do sound a caring daughter and please remember that you might well be going through similar shock, thoughts, feelings as your dad, but nobody will be asking how you are. Yes, the uncertainty, waiting and not knowing are horrible.
I have another blood cancer and I was diagnosed at 53 yrs old and I am now 74 yrs old. My chief symptom is fatigue and over the years I have l got to know how to manage it.
Yes I do need to rest in the evenings, but that is ok.
Life is good, my 70th birthday was my best ever.
@Duncan has given you a great response.
Please do look after yourself as well as you do your dad and keep posting.
If you need to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888
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Duncan I am glad you seem to be happier with the hydroxycarbamide. I hope it continues to work for you . I am glad you got to enjoy some post phlebotomy treats. I have been off the hydroxycarbamide for a week now. I don’t know myself, I have my energy back and I can think again my brain is clear. I am back next week to see the consultant to discuss options.
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adultdaughterof, I just wanted to wish your father well and hope that the side effects settle soon. For a lot of people they seem to settle after a few weeks. I am sure the hospital have told you if necessary there are other treatments.
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Aww thank you @Liz59, such a lovely message. I’m glad it’s working too, but of course would rather not have to take any medicines at all. And any excuse to indulge in café culture is good as far as I’m concerned!
It sounds like having that break from hydroxyurea has given you a nice bounce of energy! Long may that last, how marvellous. I tend to get an energy boost after phlebotomy so I’ve got a lot done since bloodletting yesterday. I’ll keep my fingers crossed that you get further good news seeing your consultant 
Do let us know.
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Hi @Duncan,
Great pics, can’t decide which is my fav, as I love teddy and doughnuts. I like the idea of a post venesection treat. I’m going to do this, in future I’m so glad you have a good haematologist now. I have been extremely lucky, with mine. He’s neen consulting with Guys in London, on my care.
Have a great day xx
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Oh yes @Lynd, we need treats, and especially after treatments. My mum used to always take me for a treat after medical appointments, or at least it felt like she would, so I like to keep that going!
That’s great that you have a haematologist you like, it sounds not so common amongst us here.
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