Now part of the polycythaemia vera posse

[JanetF]

Hi, @Duncan! Thank you for your lovely reply! Yes, it really was quite a weekend one way and another, but things are much quieter now, thankfully, and I moved my physio appointment from yesterday to tomorrow to create more time at home midweek, which was definitely the right thing to do, even if it’s so freezing cold that I’m sitting here with multiple layers of clothing on and hot water bottles behind my back, on my lap and under my feet just to try to keep warm! Midwinter… And to think that before I moved here I imagined that Africa was always hot! Mind you, we are at 1,640 metres altitude here, which is higher than any point in the UK.

Yes, I have finally had to give in and let my bulleted list of comorbities stretch onto three pages. Three pages with no detail - just the name of each condition. I have been fiddling around with the margin settings, font sizes and white space gaps for so long to keep it on two pages, but with the Polycythaemia vera (PV) diagnosis I have now had to bow to the inevitable and let it spill onto a third page. I also have two versions of my main health document, one done chronologically and the other done by body part (really!), which are 56 and 69 pages long respectively and that’s before I add anything about Polycythaemia vera (PV) to them, which I am planning to do this weekend! But it’s good to have something to fill the days!

I have had some excellent doctors over the years and really appreciate them. I have also done a certain amount of ‘shopping around’ and ‘testing the water’ to find ones who I am happy with (and who are happy to treat me as an active participant in the process!), as well as being experts in their field. In France and Spain it took a while to find the right specialists for me, but in Lebanon and Kenya it was much easier, so I am a bit worried about having to start the process again when I settle back in Spain soon, as many of my health hassles have started since I left there (but not because I left there!), so I won’t just be picking up the thread with doctors I know from before.

A pint of blood in 15 minutes is impressive! The last but one time that I had it done, the phlebotomist proudly showed me their new system and told me that my pint would be out in 5 minutes max, but then she ended up having to pull the blood down the tube with the medieval-looking instrument because it was so thick and it took the best part of an hour, but now that I have started on the baby aspirin it came out on its own and only took about 20 minutes.

Yes, the cost of healthcare in the US is notorious. I can use my UN retiree health insurance for full cover anywhere in the world except the US, where I can only use it if I’m on holiday and fall ill - I can’t specifically go there for treatment because the costs are so high. Staff working for the UN there have a separate health insurance system from staff elsewhere in the world and it costs a small fortune in comparison with the same cover for staff elsewhere.

Thinking in advance about where you could find an Myeloproliferative neoplasms (MPN) specialist when you are away from home (especially if you are in a rural area) is a good idea. You don’t want to have to plan your life and your holidays around your Polycythaemia vera (PV), do you, but there again you need to be sensible and… I hesitate to say that being forewarned is being forearmed, but it is, and we need to be!

All the best,

Janet

[JanetF]

Hi, @Erica! Yes, the cardiac scares were just that - scary! But I am home and back to my usual self, just very tired. The fatigue is probably the worst thing about the Polycythaemia vera (PV) for me at this stage.

Indeed, what we will do for a drink and a biccie! However, I have now identified one local hospital that only gives you post-venesection Fanta, but no biscuits, so I am narrowing my list down!

I am planning to tell my brother about the Polycythaemia vera (PV) diagnosis this afternoon. I hadn’t planned to tell him - at least not yet - because he has mental health problems and he worries about me being so far away. He worries a bit less now that I have retired and am not travelling to potentially dangerous places on mission any more, but he still worries about me and I didn’t want to give him anything else to worry about, but I have now told my cousins (we were only ever a small family - my mother and grandmother brought us up - and now it’s just my brother and me left, and we have an aunt in her mid-90s and three cousins) and there is an outside chance that one of them might mention it to my brother, assuming that he already knows, so I need to be the one to tell him and today is the day. I’m sure I’ll feel better about it once I’ve done it!

Wishing you a nice day and thank you as always for your replies and support!

[Erica]

Hi @JanetF it is sometimes not easy telling people, relatives or not, about our health challenges and I am often more worried about how it will affect them.
If it is playing on my mind to do I often find I feel so relieved afterwards.
Yes, very personally I think it is better he hears it from you. I know there have been instances in my family where someone has heard something indirectly and they have felt upset and hurt and it causes a rift.
In my experience I also think perhaps it is the way I tell people and if I tell someone in a fairly matter of fact way, briefly without too many details they will not worry as much.
Please do let us know how it goes.
Fingers and toes crossed for you xx

[JanetF]

Hi, @Erica! Thank you so much for that. Yes, I am very worried about how it will affect him. He lives alone, spends almost all his time on his own and is very vulnerable because of his mental illness. He can’t cope with a smartphone (I have bought him one a few times and set it all up for him, but it stressed him out, so he has just kept using his simple old phone), so I only have basic ways of keeping in touch with him.

I seem to be able to tell friends about the Polycythaemia vera (PV) in such a reassuring way that they come away thinking that it isn’t quite nothing, but isn’t really too much to worry about - the downside of which is that they then don’t understand why I am at the hospital so often and why the dreadful fatigue is so dreadful! I haven’t told all my friends yet (they are spread around a bit, as you can probably imagine) and haven’t told my best friend, who I would really like to have told, but her parents both died while I was going through the investigations for the Polycythaemia vera (PV), just three weeks apart. She is an only child and it has been an awful time for her, and she is getting married in the autumn (I’m going to be the world’s oldest bridesmaid for her!) and I am trying to support her through all that, so the last thing I want to do is to give her this to worry about as well.

Thank you again for your support and I’ll let you know how it goes with my brother later today.

[Duncan]

Ha yep @JanetF I know the need for re-acclimatising to a whole new set of weather! I remember so clearly the first time I travelled to the southern hemisphere during a wet cold British spring and stepping out of the airport into summery dry warm wind, it literally blew my mind! Must be many, many different climates across the African continent, even within a single country’s borders. Alas my only travels in Africa were around Morocco where I loved the dry heat at sea level and snowy Atlas Mountains. I’ve wanted to visit sub-Saharan Africa but being an LGBTQ+ person now in a same-sex marriage makes it dangerous to travel in many countries together and I haven’t got the energy for all that these days!

Sorry to read of your brother’s health issues, but he’s lucky to have such a thoughtful, caring sibling. Hoping it went well telling him, perhaps he’ll need time to process your news and will come back to you with questions as they arise for him. Would he find the Blood Cancer UK information about Polycythaemia vera (PV) and MPNs helpful?

As for telling loved ones in such a way that they don’t worry but also get how potentially serious these MPNs are, I haven’t quite figured it out yet! I’m pretty optimistic so tend to share the positive aspects of my prognosis and that it’s an ‘invisible’ type of cancer. I also seem to need to remind folks a lot about the fatigue and sun risks now my skin is photosensitive from the hydroxyurea and apologise for not being able to be outdoors in the heat, or indeed have the energy to hike or socialise for hours.

A few friends can’t get their heads around it being both chronic and yet not necessarily the end of me. No one apart from my partner who’s seen me wiped out by merely making our morning coffee seems to get how the fatigue can be disabling. Even my therapist is finding it quite a juggle to hold in mind that I’m sitting there with an incurable cancer but also talking about it being under control. It’s a very nuanced kind of illness. Like @Erica says it’s about how we tell people, and maybe I need to try other ways of sharing

My own siblings and wider family haven’t figured out how to communicate about my Polycythaemia vera (PV) either so they never mention it. A painful irony is that my closest relative was also diagnosed with an Myeloproliferative neoplasms (MPN) but appears to be powering through it as if it’s nothing, despite having been hospitalised by it. We could be supporting one another now but they’ve barely even acknowledged the uncanniness of us both having MPNs.

I love the sound of your UN health insurance—one less thing to worry about when living in places where it might not be so easy to communicate health needs or access appropriate healthcare, I imagine. Keeping my fingers crossed that your move to Spain and search for healthcare there runs smoothly. I guess it depends on how close you move to a city with good hospitals, or is healthcare a bit spotty all over Spain? And then the language and treatment differences. Lots to think about and research

It’s been hard to admit to myself that I just can’t galavant off into the wilds so freely anymore, unless I don’t mind the potential for being airlifted during any health emergency! Had to turn down a friend’s suggestion this week to go wild camping as I don’t feel ready yet to risk being out in the sticks without phone signal and far from any kind of hospital. Sucks to live with this, but I’m glad I’m here to complain about its inconveniences! And in some ways the Polycythaemia vera (PV) and its risks are making me more sensible so maybe it’s actually beneficial overall?!

I’m so glad you found the forum @JanetF, it’s really helping me to hear from another survivor making sense of it all away from the motherland. Plus I’m nosy and love to hear about interesting people living in interesting places!

[Lynd]

AWESOME Duncan, so happy to hear your levels are good. Thanks for sharing, and being a huge part of all our journeys too

[Duncan]

Aww thank you so much @Lynd, that’s really sweet of you How are you doing now, still holding onto your own good news I hope?!

[Lynd]

Bless ya, I am. Bloods again on Friday and results/ call on Monday

I’ve been to the Myeloproliferative neoplasms (MPN) forum today, in Nottingham. The Myeloproliferative neoplasms (MPN) specialist from Notts Hospital spoke, and later, her team came in for Q&A. We also had a break out, too, for the different MPNs and, well, I’m so happy to have met @Rammie18. You two have helped me sooooo much. It was great to have the opportunity to say thank you, face to face to him🥰

Like you often say @Duncan, this forum was a great find, and the people on here are amazing.

Duncan, I hope you’re having a treat or two to celebrate your good news

[Duncan]

That forum sounds so excellent @Lynd. Kind of jealous not to have been there too but I get to live vicariously through your experiences here so thank you! Isn’t it great to meet others in real life with these dratted Myeloproliferative neoplasms (MPN)—they feel so much less “rare” when you’re sat beside others living with the same thing, sharing tips and empathy. Hopefully you got some great chinwagging in!

Thank you for asking @Lynd, and funnily enough I’m planning a little riverside getaway for next week and have been looking up canoe rentals and hikes and of course cafés for refuelling

[Lynd]

Sounds like a perfect treat Duncan. I hope you enjoy every minute. Good for your well-being and soul. Have a slice if cake for me too xx

Lynd xx

[Rammie18]

@Lynd

Was so lovely meeting you shame didn’t get more time. So hope our paths cross again soon.

Thank you so much for letting me know about the event. Was great to finally meet in person others with Polycythaemia vera (PV) and listening to their experiences and advice as well as medical professionals speak so passionately about the condition. Found it really useful.

[Lynd]

Good morning @Rammie18,

It was so good to meet you, and get to say a heartfelt thank you for all your support I agree, it would have been so nice to chat for longer. The time in the break out room, flew by too quickly too.

I had said to my bestie, you would be there, and we were both scouring the room, looking for a BCUK lanyard Honestly, it was so great to meet you. I hope we get the chance to catch up again soon.

Thank you again, for all your help & support, it has meant more than you’ll know xx

Take care,

Lynd xx

[Erica]

Oh @Duncan I await hearing about your little riverside getaway, enjoy.

[Duncan]

Aww thank you dear @Erica, plans are all coming together nicely. Returning to a cool 50s motel I love beside the Russian River and its pool is open for summer!!! Doubt I’ll swim though as I got the worst sunburn of my life the last time. Torn between having a big old hike in the redwoods or a 10-mile drift down the river, the latter of which would be less effort

[JanetF]

Hi, @Duncan! Thank you so much for your lovely reply! Yes, I remember the first time I came down the steps of a plane in Asia and thought that the engines were still running, but it was actually just the heat and humidity that had hit me straight on! Here, we are so high up that there is never any humidity, but I am sitting here with my hot water bottles again, wearing several layers of thick clothing, trying desperately to keep warm while earlier today my friend in Alicante was asking if I ought to be trying to get AC put into my flat in Spain before I get there for the wedding next month so that at least I can be cool enough to sleep! I completely understand your reluctance to travel to most countries in sub-Saharan Africa from an LGBTQ+ point of view. My first boss (the best I ever had in my entire working life!) when I came here in 2012 was a gay man and it was a difficult part of the world for him.

In the end, I did manage to tell my brother, but not on the day that I had been planning to, as I could sense that it wasn’t the right day to tell him. He seemed to take it in and understand, and next time we chat we’ll see to what extent he has processed it. He might find the BCUK booklets helpful - thank you for suggesting them - so I’ll mention them to him. Often he can’t get beyond what is going on in his head, so I need to wait for the right time for things.

I suspect that finding the balance between telling loved ones (and not-so-loved ones!) in such a way that they don’t worry too much but also understand how potentially serious these MPNs are is so tricky that it’s a minor miracle when we manage to do it! I’m pretty sure that I’m over-compensating in not wanting people to worry too much, which means that they are probably (almost certainly) not understanding that it is something serious. The cancer itself being invisible and things that flow from it like the tremendous fatigue also being invisible doesn’t help that, I suppose. As you said, it’s a very nuanced kind of illness. I still haven’t told that many of my friends, so hopefully as I do, I’ll get better at doing it - practice making perfect and all that!

I’m ever so sorry about your siblings and wider family not mentioning your Polycythaemia vera (PV). That must be very hard. Having such a close relative also being diagnosed with an Myeloproliferative neoplasms (MPN), but powering through it as if it’s nothing really doesn’t help, does it? At some point researchers may find stronger genetic links for MPNs and you and your relative could potentially be of help in that. Of course, it could just be a coincidence, too, but discoveries are being made not quite all the time, but often! When you think that it was only in 2005, I think, that the JAK-2 mutation was first identified, and that was only a hop, skip and jump ago. I’m JAK-2 negative, but I’m sure that at some point the researchers will identify another gene mutation (or several) that will account for the remaining 3%.

Yes, the UN health insurance isn’t too bad. The admin side of it is a bit of a nightmare, but the cover itself isn’t too bad at all. In Spain the health service is regional, rather than the national system that we have in the UK, although of course that is now devolved to the regional powers. The language isn’t a problem for me, but treatment differences may be - I’ll find out once I’m there permanently! My specialists here, like my neurologist, haematologist, endocrinologist and so on, have all said that they are happy to continue to see me by Zoom or WhatsApp or whatever, but gradually I will need to find new specialists there and, going on previous experience in Spain, that is a bit of a worry, but I’m sure it will work out OK in the end!

Yes, having to admit to yourself that things have changed and you can’t take the risks that you could before does bring you up short, doesn’t it? But, as you said, in some ways the Polycythaemia vera (PV) and its risks are making you more sensible! I am slowly but surely finding out that even just with taking baby aspirin I have to be much more careful than before, after an incident the other day that left my kitchen looking not quite like a film set from a blood and gore film, but not far off - and all thanks to the plastic lid from a yoghurt pot! Yup, those litle plastic lids that sit over the foil lids of a yoghurt pot! The machine (or perhaps the human?) that puts them on clearly never intends you to get them off and in trying to get one off I managed to make a little cut in the fleshy pad of my thumb and within seconds there was blood everywhere! Everywhere! Well, at least we know the blood thinners are working!

I am really glad I have found the forum, too, and it is lovely to be in touch! I hope you are having a lovely - and very safe - holiday!

All the best,

Janet

[Duncan]

Aww thanks so much @JanetF, it’s lovely to be able to open up about stuff here and not feel at all judged. In fact, it feels supportive to share with someone as well-travelled as you and to hear you’ve known other LGBTQ+ folks living in places that might not wish them well.

I’m really glad your brother was able to take in your health news and hopefully he’ll support you in his own ways. I find that Blood Cancer UK research can be really helpful as it’s written in such plain language. I’ll keep my fingers crossed that you can be there for each other during this adaptation and your big move—although perhaps he’s used to you being dotted about in far-flung places?! What a fascinating life it must be, @JanetF! I nearly got into signing up with Médecins Sans Frontières or similar back in the day and was keen to work internationally but my qualifications didn’t quite match the practitioners that were needed, and then I met my now-spouse which necessitated settling in one place, and here we are. Never thought I’d end up in the US, although I imagine it’s been easier to migrate here than, say, somewhere like Saint Helena island!

You’re so right about finding a balance in how we tell others about these diagnoses we have. Definitely about practice making perfect, let me know if you figure out the trick to it! My own family, if I were to generalise, are not into expressing themselves, and I’ve come to learn not to share too much as I’m “too sensitive” for them! Their loss. So that’s what my found family are especially good at, my dear friends nearby and in their outposts around the world, and of course my other half right next to me gets to hear all the minutiae!

Speaking of, we’re off next week to the beautiful Russian River, winding its way to the Pacific under ancient redwoods. I love the river towns around here, sort of removed from the hustle and bustle of the Bay Area and LA but still modern in their own ways, and often just as progressive. It’s easy, for example, to still be LGBTQ+ and vegan out in these cute little towns thanks to Californians actually being so open-minded and inclusive. Or at least to our faces they are! I’ve settled on having a day trip along the wild coast road up to a rhododendron nature reserve for some hiking under redwoods, and then some canoeing around Guerneville, and lots of stopping en route to take in the views with coffee. So excited, I love exploring here.

Yes I think I read about it being only recently that the JAK2 gene mutation was found! Bonkers. It’s also pretty recent that our blood disorders were classified as blood cancers, perhaps why so many doctors still don’t think of MPNs as cancers. Interesting that you don’t have JAK2, although there’s apparently dozens of other rarer ones that can trigger the blood cell proliferation we live with. Wonder which one you have? I’m keeping optimistic that the research being done with CRISPR gene editing will focus on the mutations we have soon enough.

Interesting to read of how Spanish healthcare is, that sounds a bit like what I imagined. That’s excellent that your specialists can stay with you as you transition over to Spanish care. Hopefully you’ll find equivalent specialists who do as good a job as you’re used to and you can live out your life under beautiful Spanish sunlight. Definitely recommend AC there if it’s as hot as usual!

And yes our blood and skin does seem thinner and perhaps less resilient with Polycythaemia vera (PV). My skin is so much drier now that I’ve had to finally give in and moisturise properly—another thing my new haematologist was great at advising me on! I’ve been noting similar sorts of annoyingly slow recovery from basic nicks and scrapes and so on. Currently awaiting a former splinter to heal days and days later. I hope your thumb heals well. My skin heals more slowly these days while my blood wants to burst out at any opportunity! Rather it be thin than thick like molasses though, right?!

All the best @JanetF, may we continue to survive with such optimism and shared support!

[JanetF]

Hi, @Duncan! Thank you for your lovely reply! I hope you’re having a super holiday - your plans sound great!

It’s funny how we can end up in places that we never imagined we would, isn’t it? I had no idea that I would end up doing what I have done and living, working and travelling where I have. I lived in Paris in my early 20s and again in my early 30s, and had travelled quite a bit in Europe and Asia, but it took until I was 47 for my first degree to finally come in handy and provide me with a job and a life that brought it all together to live and work in some really interesting places (and some that were interesting in not such a good way, too!) after years of doing lots of other things. I always say to people that it’s never too late to take on something new and exciting! There are lots of ex-MSF people who work for the UN, as you can imagine. It’s a good training ground!

It looks as if my thumb is going to take a while to heal, which seems ridiculous when it was just a small, simple attack by a vicious yoghurt pot lid, but it does make me realise that I am going to have to be careful. As you said, better for our blood to be thin than thick like molasses, which is what mine was like until very recently! Like you, I am careful about moisturising and about sun protection, having had three dubious moles removed last year (all of which turned out to be OK, thankfully), especially living so close to the equator, but it’s good advice for all of us.

All the best and happy hols!

[Duncan]

Wish y’all were here

[Erica]

Hi @Duncan I wish I were there too!
Enjoy

[JanetF]

Ah, the freedom of the open road! Happy hols!