Firstly welcome to the forum and thank you so much for posting and sharing your experience.
Though I’m not as young as your partner I was diagnosed at 39 in Aug 2020 with Polycythaemia vera (PV) but reading up on the symptoms feel I’ve been living with this for many years. Despite coming up to my 2 year anniversary of being diagnosed I’m still learning about the condition and how I’m acting and responding to it.
Being diagnosed with any type of cancer is scary and will obviously bring fear to those diagnosed and those around them. You’re having to think and feel it physically, mentally and emotionally.
I’ve not had a bone marrow biopsy as despite researching and quizzing my haematologist about it, they kind of dismissed it and listening and reading to peoples reaction to having it done, it wasn’t something I was going to push.
It doesn’t seem like a pleasant procedure but if it provides better information for your medical team and conclusive decisions on the next step or treatment it maybe best to bite the bullet.
Treatment differ for different people which I found difficult to comprehend as I just assumed once you have cancer you’re straight in hospital having chemo.
This isn’t the general case with Polycythaemia vera (PV).
In some cases, treatment is having venesections and aspirin, another common form of treatment is hydroxycarbamide or hydroxyrea. (Oral chemotherapy) Another option is interferon (injection) you do yourself.
Initially your medical team will want to gage your blood levels and wait for these to stabilise and then decide what’s best to do to control your levels. This can take weeks or months.
The blood cancer website has a brilliant breakout of what Polycythaemia vera (PV) and info about managing it, treatments and prognosis, I can’t recommend it enough.
What you need to appreciate cancer effects people differently even if you have the same type of cancer and the same thing applies to treatment and medication.
What really helped me from my day of diagnosis to now, is the amazing support and advice you get on this forum.
I’ll be more than happy to discuss how having Polycythaemia vera (PV) has effected me over the initial two years either with you or your partner and answer any questions you may have as I’m sure all of us here will be able to. Just drop me a message or post on here.
This forum isn’t just for those diagnosed but also for people supporting those with the condition too.
The clinical nurses attached to the forum and support line are equally amazing too.
Take care of yourselves and don’t be stranger to keep posting on here. You guys aren’t alone in this