Supporting someone with Polycythemia Vera

Caring for & supporting a loved one
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Hello all,

I met the love of my life last year and she was sadly diagnosed with Polycythemia Vera in November at age 24 (I’m 38). She lives abroad (I’m in the UK, it’s a long distance relationship for now) and has regular treatment and is able to see the same doctor each time. I am aware that she does keep some things from me to protect me but we talk about it more and more, which I am glad of. The doctors say she has maximum 30 years to live, likely far less, but of course it’s always hard to judge these things… she is a smoker but has cut down dramatically already, to the point of almost stopping.

This summer she will come to visit me for a week or two and I would love to know how to make her stay more comfortable and enjoyable, since she is not really used to people caring and making the effort for her and she rarely gets a break. If anybody has any tips for me on how I can support her, both from afar and when she visits me, I’d love to hear them! I care about her deeply and whilst I have read quite a lot about Polycythaemia vera ('PV'), there were things I missed for a while… for example she has never been a great eater and I have sometimes nagged her about that, but I realise now that Polycythaemia vera ('PV') also plays a part in affecting her appetite.

When she comes to stay I was thinking about the following (since she also has symptoms relating to skin irritation and itching)…

  • soft, breathable bedding and towels and plenty of changes of changes in case of sweating
  • gentle soaps
  • planning small meals and regular snacks
  • avoiding certain foods which I understand her doctor has suggested for her to avoid
  • encouraging good hydration
  • keeping gently active

I realise this may sound a bit like overkill or patronising towards her somehow, but she is someone who never complains and who will be reluctant to tell me what she needs in case it puts me out somehow. It also helps me to cope with the situation when I feel I can help her in some way. :slightly_smiling_face:

Anything else you think might be useful to know would be gratefully received. Thanks for your time.

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Hello there @Elizabeth38, welcome to the forum. I’m really sorry to read of your loved one’s diagnosis with Polycythaemia vera ('PV'), it’s lovely that you’re here to support her.

Having been diagnosed with Polycythaemia vera ('PV') myself, I’d say from my non-medical but lived experiences that it’s great that she has regular treatments and is able to see the same doctor. Treatments for Polycythaemia vera ('PV') tend to be quite similar for different people, so I imagine lots of blood tests and perhaps daily aspirin is her base level treatment, although these may vary country to country.

I’ll share the great Blood Cancer UK information about Polycythaemia vera ('PV') here for you, which I still refer back to often. You’ll find links to further information like treatments, risks, and the emotional aspects of living with Polycythaemia vera ('PV'): Polycythaemia vera (PV) | Blood Cancer UK

May I just say that I’ve not heard any blood cancer specialist, including at blood cancer conferences and my own doctors, say something like there is a 30-year prognosis with Polycythaemia vera ('PV'). In fact, I’ve been reassured that by following our treatments we can live into normal old age with Polycythaemia vera ('PV') and that we are more likely to pass away from something unrelated. Hard as that is to believe, that’s quite a comfort for me. Being diagnosed so young means there are many more years ahead for even better treatments to be found for Polycythaemia vera ('PV') in someone like your loved one. I might question the specialist who gave that 30-year prognosis, although perhaps they’re accounting for the fact that your loved one has smoked?

Unsure if you’d like information for your loved one’s country or language as there are blood cancer organisations in many places around the world, just let us know as it can really help to learn about these sorts of diagnoses in our own mother tongue. It might be that treatments and medical norms in the UK don’t match where your loved one lives, so it could be worth bearing in mind those sorts of differences.

As for your queries about helping her feel more comfortable, they’re really so thoughtful. You say she has the dreaded itchy skin, a sadly common side effect of Polycythaemia vera ('PV') and other blood disorders, so all your ideas sounds great to me. Perhaps speak to her about the efforts you’re going to so she can feel part of decisions? Maybe you could even simply ask what she needs as we all have our own preferences after all! If you were visiting her in a place new to you, what might make you feel more comfy?

Hope that helps a little @Elizabeth38, do let us know how your planning comes together and do consider looking more around the forum for others living with Polycythaemia vera ('PV'), just use the search box at the top.

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Hi @Duncan,

Thank you so much for this kind, helpful and thoughtful reply - I really appreciate it! :heart: I will take a look at the resources you have shared… I’m determined to educate myself as much as possible.

My partner is based in South Africa (English is her second language but she is fluent) and whilst she is able to access regular medical care and treatment, I’m not sure exactly on the standard of care she receives or of what medication she takes. I know that they take blood regularly and they have switched around her meds a few times due to some side-effects. She is extremely independent and doesn’t like to weigh on me by talking about it too much as yet, which I respect, and I suspect that there is more to it which has resulted in this shorter life expectancy (in addition to the fact she has smoked for many years). I will keep in mind what you’ve said and I have encouraged her not to accept their estimation as something concrete.

Her life has been an unusually hard one and she isn’t accustomed to relying on other people for support… I know if I ask her how I can help her to be more comfortable, she will thank me and appreciate it but will brush it off, not wanting to make a fuss. I would just like for her to be comfortable and as well as possible without smothering her or stepping on her independence.

Thanks again for answering me and sharing your own experiences, it really helps to have your input. I hope that you are feeling well. :blush:

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Hi @Elizabeth38 having read both your posts it really comes across how loving and caring you are.

I have found that open communication is so key and not a thing me and my partner are good at,

I have also really learnt that every time I try and second guess what my partner thinks or wants I get it wrong !!

He is also fiercely independent and used to his own routine so he hates feelings ‘controlled’ or ‘smothered’, although I think I am just being caring and as for nagging (although I would not call it that!!, perhaps encouraging), he just clams up and digs his heals in.

From my experience I would say everyone’s Polycythaemia vera ('PV') journey is different and your partner is coming to see you, because you are you. Perhaps all you can do is ask her what she might like or not like and respect her answer and really enjoy your precious time together.

Have fun, relax and please do let us know how you get on

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Aww, you’re most welcome @Elizabeth38. I can really empathise with much of what you’ve shared.

From my perspective, and based on descriptions from others around the forum, it really can feel shocking and even traumatising to be told we have blood cancer. There are also some of us survivors of Myeloproliferative neoplasms ('MPN') (such as Essential thrombocythemia ('ET') and Polycythaemia vera ('PV')) who have been told by our doctors that we don’t have cancer! It’s a confusing time after diagnosis for sure, no matter where we live or how up-to-date our haematologists are. I’m glad your partner has you looking out for her.

I have to admit, I couldn’t think of a (blood) cancer organisation in South Africa, and so I had a good search out of interest. As far as I can tell, there are none specifically for Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV'), but here are a few organisations that support people with cancer generally in South Africa:

Alignd cancer support groups: https://alignd.co.za/cancer-support-groups/
The Cancer Association of South Africa (CANSA): https://cansa.org.za
The Cancer Connection: https://thecancerconnection.co.za
Johnson-Rose Cancer Foundation also looks promising, but their website is currently on pause: https://johnsonrosecancer.org

The first 3 of these have so many links to other cancer-related groups and resources that I hope your partner and you can find something useful. It might be that there is peer support like this forum but in her own time zone, or even local in-person groups.

Do keep us posted about how your partner and you get on @Elizabeth38, and I hope plans for her summer visit come along really well!

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This is so helpful to read dear @Erica, thank you for sharing these insights. I think my husband and yours might have gone to the same school of thought! I’d also push back against that ‘nag’ term—encourage him, even :wink:

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