Oh @Duncan
Thanks for letting us know ….its good to get clarity isn’t it .. especially when it’s best case scenario!
Please take good care of yourself
Keep us updated !
2 Likes
Hi Duncan, I’m so pleased for you, it’s such good news. It’s odd that one of the ‘benefits’ of having Polycythaemia vera (PV) is that we get regular monitoring which picks up on other issues. I think we should get a discount on health insurance not have to pay more! Anyway, enjoy your day, and thousands more.
2 Likes
Hello @Duncan. Thank you for your kind words and for thinking of me during your MRI scan! I have added another -ologist to my medical team. Thank you for using that phrase of the ‘many -ologists gang’. It has helped me today and made me smile. I am now under the Respiratory team and I am feeling very discouraged as I found out yesterday from the latest CT scan than there is still an area of infection deep in my lung. So it seems all that treatment in isolation at the beginning of this year was to no avail. The scan will be repeated in June and I have emergency antibiotics to take if I become unwell with a fever in the meantime. Sometimes it feels like what’s the point of it all especially as my digestive system is still ‘unhappy’ after all the IV antibiotics I have had. Thinking of you. Warm wishes, Willow
2 Likes
Oh @Willowand @Duncan yes, the -ologists and I am not surprised that you are feeling very discouraged after all that time you spent in hospital, in isolation, at the beginning of the year.
I am so sorry to hear that your digestive system is still ‘unhappy’ after all the iv antibiotics you have had.
I feel I ought to be able to write you a poem for this time when it feels like what’s the point of it all or to jump through my laptop screen to give you a big hug.
However the Blood Cancer UK support line is there for you on 0808 2080 888.
If only I felt I could support you as you have supported so many others on our forum.
A big supply of virtual hugs winging their way to you, please do keep posting. xx
2 Likes
Oh @Willow that really must feel discouraging after all those intensive treatments. I really feel for you. We can hold onto so much hope for these test results showing improvements, so of course it won’t feel so great when that is dashed somewhat. I do hope you’re not feeling like you could have done anything else to improve those results!
I wonder, do those emergency antibiotics feel like something of a comfort? I remember after my heart attack I used to carry around a little TNT spray bottle I was given during the cardiac event that really helped (apparently the glyceryl trinitrate instantly opens veins and takes strain off hearts). It always felt like at least I had that if another heart attack occurred. Then so much time passed that the liquid evaporated and I hadn’t even noticed, which came to be its own sort of relief. I hope time will evaporate some of your very understandable concern.
I really love @Erica suggesting poetry. I know it won’t erase the worry, but could writing get some of it out of your system so you don’t have it swilling around? I’ve written quite a few angry things recently that I’d probably never share but helped express some of this bloody health anxiety. Or should I say health fury?! Better out than in, as my mum would say!
I’m sure you know too that worry can mess with our digestive systems on top of all these medicines we take, so do please treat yourself with simple delicious foods that your body can tolerate. I hate knowing you’re not feeling entirely better dear @Willow. I’ll keep my fingers crossed that those follow-up tests will give you better news 
3 Likes
Just wanted to say thank you to @NinaSt, @Jonpd, @DottieB and @Pedro for your lovely support, and yes isn’t it great news?! I’m trying to take it in.
Had therapy today and it was such a relief to be able to joke about my good fortune at ‘only’ having a tiny benign little brain tumour! What is this optimism?! The thought of thousands more days of living with a brain tumour might in my youth have terrified me about the long road ahead, but now I’m like yes please to all that!!!
I think we all know versions of the shock we’ve felt about our blood cancer diagnoses and I’m realising that mine maybe primed me to tolerate this latest one with less terror. I’m like oh this is benign, no need to waste time worrying too much about it in that case!
My family doctor has already got the ball rolling, booking me in to see my new endocrinologist next week, so I’m feeling cared for all round, both here and there. Thank you all 
4 Likes
Hi @Duncan just wondering how you are and whether you have seen the endocrinologist (another ologist) yet?
Look after and be very kind to yourself.
2 Likes
Hello there @Erica, thank you for so kindly checking on me. Hard to believe but I’m alright! Been taking it easy over the last few days to get my head around it all.
I saw my lovely new endocrinologist last week and she reassured me that I have such a tiny benign brain tumour that it will likely never cause me any trouble. She showed me (via MRI images) how it’s not bothering anything in my brain and it likely won’t grow further due to her recommended treatment.
After a couple more upcoming blood tests to confirm how the tumour is affecting my hormones I should start taking another medicine which will shrink it and help undo changes to my pituitary gland and the hormones it produces.
So all in all, it’s excellent news. Have to say, I was met with such care and understanding from my new doctor that it brought me to tears. She couldn’t find any tissues and was so apologetic at the thought of making me cry, and yet there I was feeling enormous relief! I’m fortunate to have been referred to such a caring doctor.
I just read that you too have a benign tumour @Erica!!! I’m really so, so glad yours is benign, although I imagine the testing wasn’t fun. I hope it doesn’t cause you trouble, nor any further testing or medicine you might need.
Oh and this might make you smile—I realised I already had another -ologist before gaining an endocrinologist as my therapist is a psychologist! Definitely got quite the gang of doctors keeping me going!!!
3 Likes
Oh, that is excellent news @Duncan and thank goodness for our ‘ologists’ I say.
1 Like
Thank goodness indeed! Dr Google would absolutely not have helped me 
1 Like
Dr Google definitely did not help me.
1 Like
Hello! Hope you are feeling well, Im wondering , did you changed your daily lifestyle , or diet with Polycythaemia vera (PV)?
1 Like
Hello there @NinaSt, it’s so lovely to hear from you! I am well, thank you for asking. May I ask how you’ve been? Did you make that big move you mentioned you were thinking about?
Hmm I wouldn’t say I changed my daily lifestyle or diet much, except to make more effort to stay hydrated. I feel more sluggish if I haven’t drunk enough water, plus I get really dry skin these days. So I moisturise from the outside and hydrate from the inside!
As for diet, I was already vegan before diagnosis and have maintained that. I try not to eat as much iron-rich food now (I used to eat loads of stuff like spinach and green leafy vegetables), and I changed my multivitamin to one without iron at the suggestion of my haematologist. But otherwise I try to be active every day with walking/hiking/yoga, which is easy since we adopted an active little dog last summer! I’ve been kayaking a few times too which I love.
What sort of stuff keeps you active @NinaSt, are you still into your dancing? I went to a great concert the other night and enjoyed shoe-gazing like I was back in the 90s!
3 Likes
Thank you for kind thoughts, last 6 monts I had some familial problems, so coudnt write here.
I try to keep beeing hydratated , but sometimes , when I had managed a lot of works per day, Im feeling exhausted, like law batteries , and can only to sleep. After that I need to have more 1-2 days to recover my energy.
Like you , moisture my skin , do you use UV cream ( which protection)?
Now Im on interferon 3 times week , checking monthly my platelets.
Keep well,
1 Like
Sorry to read of those familial problems, I hope they’ve settled down now @NinaSt. Perhaps having that going on helped take your mind off the Polycythaemia vera ('PV') for a moment? I never thought I could ever get distracted from living with blood cancer but sometimes it happens!
I know exactly what you mean about feeling exhausted like low batteries, great description! With me the exhaustion can build up over a few days, or even over one day if I’m really active, and if I don’t take time to rest then it worsens the fatigue overall. This happened last week and I ended up lazing about this weekend to restore my energy. Resting partway through and then resuming the activity later on usually saves me from getting too fatigued, maybe that can help you too?
And yep I use SPF 30 moisturising lotion every day and on really sunny days (and if I’m planning to be out in the sun hiking) I add a proper SPF 50 mineral sun lotion on top of that. I also find using moisturising and hydrating shower gels and bath oils keeps my skin from drying out too much. Oh and carrying around a water bottle so I can always hydrate that way. Sounds like your interferon and my hydroxyurea dry us out. I used to have such oily skin so I’ve really had to learn how to moisturise these days!
1 Like
Thanks for your reply,
You should know, that how you supportive write has a big impact to everyone on this forum. I like to read every your comment)
A think that the dry skin is commonly with Polycythaemia vera ('PV'), and I use different lotions for dry skin with urea after shower too, that helps me to keep my skin feeling hydratated. It can sounds weird, but at summer when I go on a vacation to the see , I feel less my skin scratching . ( sure with UV protection ).
3 Likes
Aww @NinaSt what a lovely compliment, thank you! Don’t know how to respond 
Interesting that your skin feels less scratchy beside the sea, something about the salty air perhaps? I’m lucky to have lived near the sea for many years and the fresh air is definitely cleaner here, even in a city, thanks to the ocean breeze I reckon.
Wish I’d bothered to moisturise when I was younger! It’s been a lot of needing to try different brands and figuring out which lotions I like the smell of, which ones work, that sort of thing. Hadn’t heard of urea as a lotion ingredient, I’ll look it up. I use argan oil as it’s nice and moisturising just on its own. It can be mixed with essential oils to make a beard oil too—I use redwood oil, it smells lush!
1 Like
@Duncan Hello,
First of all, what you’re feeling is completely understandable. I remember having very similar thoughts when I was first diagnosed. Even without symptoms, hearing the words “blood cancer” can make everything suddenly feel much heavier and more uncertain.
I was diagnosed with Polycythemia Vera (Polycythaemia vera ('PV')) at a young age as well, and over time I also developed Budd–Chiari syndrome. Despite that, I want to reassure you — life did not suddenly become a “final stage.” It just became something I had to manage more consciously.
With proper treatment and regular follow-ups, Polycythaemia vera ('PV') can remain stable for many years. In my experience, it has not stopped me from living my life, making plans, or thinking about the future. In fact, after the initial shock passed, things gradually returned to normal — just with a bit more awareness about my health.
That “existential” feeling you mentioned is very real, but it does fade. Over time, Polycythaemia vera ('PV') becomes part of your life, not the thing that defines it. Many people live long, full, and meaningful lives with this condition.
You are still you. Your goals, your plans, your future — none of that disappears because of this diagnosis.
You’re not alone in this, and you’re definitely not at the end of anything. If anything, this is just the beginning of learning how strong and resilient you actually are.
If you ever want to talk or ask anything, I’m here.
Stay strong — it truly gets easier.
4 Likes
Thank you @turan.simsek, it’s hard to imagine being diagnosed with Polycythaemia vera ('PV') at an even younger age like it sounds you were. May I ask how your treatment has been over all this time, I imagine you were diagnosed with Polycythaemia vera ('PV') before it was even classed as a blood cancer?! What’s brought you back to the forum after so many years?
3 Likes
Hi, thank you for your kind message — it really means a lot.
Yes, I was diagnosed with Polycythaemia vera (Polycythaemia vera ('PV')) at a relatively young age, and you’re absolutely right — back then it wasn’t even widely classified or discussed as a type of blood cancer the way it is today. That alone made things more uncertain, but over time I’ve learned a lot about managing the condition.
My treatment journey has had its ups and downs, but overall it has been manageable. With regular monitoring, proper medication, and lifestyle adjustments, I’ve been able to maintain a good quality of life. Like many others with Polycythaemia vera ('PV'), consistency in follow-ups and listening to your body has been key.
I’ve come back to the forum because I realized how valuable shared experiences can be. Living with a rare condition can sometimes feel isolating, and being part of a community where people truly understand makes a big difference. I also hope that by sharing my journey, I can offer some reassurance to others who may be newly diagnosed or struggling.
Wishing you all the best on your journey as well — we’re definitely not alone in this.
5 Likes