Polycythemia Vera

Hi

I’ve recently been diagnosed and had my first venesection last week and have no idea when the next one is.

I’ve watched a lot of videos of the conditions on YouTube both from experts and a few patients but I really have no idea what lies ahead.

I made the decision not to tell anyone especially my family as we lost my sister to cancer a few years ago quite suddenly and brutally and I know they wouldn’t be able to handle going through this again despite my condition being manageable.

Any help, experiences and advice would be muchly appreciated… just feeling alone with this all at the moment.

Thanks for reading…

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Hello @Rammie18 a warm welcome to the forum, I’m really glad you found it. I’m so sorry to hear you’re feeling so alone at the moment, it sounds really difficult.
I’m also so sorry to hear about your sister - I can only imagine what a devastating shock it must have been to lose her so suddenly.

Have you found your healthcare team helpful in talking you through your condition? Do feel free to ask as many questions as you need to as you’re well within your rights to feel as informed as you feel comfortable about your health.

As you may know, PV is a type of ‘myleoproliterative neoplasm’ (MPN), and we have a booklet on these which you can take a look at here - MPN Booklet The PV information is on pages 6 - 7 and 19 - 33.
If you’d like it posted to you feel free to drop me a private message with your address, or get in touch with us on the support line at support@bloodcancer.org.uk or on 0808 2080 888.

Even if you just want to chat things through like how you’re feeling etc, we’re only a phone call or an email away.

Really glad you found this forum @Rammie18 I hope it helps you to feel less alone.

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Aww that’s lovely @Alice_BloodCancerUK thanks

My haemotologist gave me the bloodwise:MPN book which typically it’s only when you’ve walked out of an appointment do they then remember the questions you wanted to ask. Thankfully many were answered after reading the book so if that’s the book you mentioned thanks it’s been useful if it’s different then that would be awesome.

I’ve made connection with a clinical nurse at my hospital (who recommended this forum) and thank you for offering help and support in additional from yourself . Much appreciated

I’m just contemplating whether or not it’s best to return to work at the moment or whether it’s best to wait to see what the plan is short term…

Was only diagnosed a week on Friday ago and have had my first venesection but after that I have no idea… guess just waiting anxiously for a letter in the post or a phonecall…??

I teach for a job and with a new start to school starting in a few days I don’t know if it’s best how to start or whether to go interrupted or go ad-hoc around appointments and symptoms…

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Hi @Rammie18 and welcome to the forum. Wow, what a lot to take in and to manage. It’s still so early on in your diagnosis and I remember walking out of the appointment and it all being a blur when I was diagnosed with Follicular Lymphoma. It not until you get home that you think of all the questions you want to ask! Make sure you write them all now ready for your next appointment.
As @SuBloodcancerUK said, please make use of the blood cancer uk support line and by posting on the forum. We are all here for each other and I hate to think of you trying to manage this on your own, so use us.
Have you made contact with the school to discuss it with them?
Please let us know how you are and keep posting X

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@Nichola75

Firstly thank you for showing a hand… And hope you are doing ok and managing it all… hope the lockdown weeks have been kind on you and those around you…

I know that although this is no curable it is certainly manageable and the big question is always “so how much time have I got?” And from what I read it’s manageable.

I guess upon reading about the condition and acknowledging all the possible symptoms and relating to a lot of them is wow how long have I been living with this and not known and taking those years off all the quoted stats.

I had a meeting with school late yesterday and though they seem to be supportive and left the ball in my court, my past wellbeing and support from the school compared to others has some what been disgraceful… to a point where despite having a sick note regarding previous absences I was threatened that if another occured my employment would be questioned. Union were onside of school but I think that was more on the rep. Despite all this my classes did superb in the end and the grunts from the few kids were more because they missed me and poor organisation and replacement teachers emphasised my absence. Anyway I’m just needing advice of whether to go back or not I think once that’s sorted I can then focus mentally on what’s going to happen next but I’m struggling to decide mainly because I really don’t know how to deal with the symptoms I’m feeling (prominently stomach cramps) and future appointments and time off… is it best to take total leave to avoid disruption and all parties know what’s happening or go part time or act normal and go back full time… I know it’s my decision but I really don’t know :frowning:

Thanks for replying and reading x

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Hi @Rammie18, to echo what @Alice_BloodCancerUK and @Nichola75 have said a great big welcome and we are here to support you. You mention that feeling of being alone, I remember it so well, I felt in a bubble, the only one in the world in my situation etc. I must be difficult keeping your diagnosis from your family.
You must still be in shock, your world has been suddenly turned upside down.
I am sorry you lost your sister to cancer, you have been through a lot.
I am glad you have made contact with your medical team and your clinical nurse and perhaps they are the people to ask the questions about your stomach cramps and going back to work etc.
You have the Blood Cancer UK support line details if you would like to talk to someone and we are here for you to be able to say what it is really like being you. Take care.

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@Erica

Thank you all so so much for your care… seriously as rare or a condition it is, feeling that support is out there when I need it adds a bit more anxiety release with each deep breathe.

I think that I might need to take time off work and get a gage on how I am feeling each morning and through the course of the day. What is going to be difficult is pretending to others that I am working when I am not. I will for sure not stay in bed and try and devise a productive schedule of where I can go and do… (argh but where???) I don’t like staying still and love being around people. Which is why I will kinda miss being in a classroom but I do need to look after my self and not feel guilty or a fraud for looking absolutely fine and normal. I don’t want to be in denial but I also don’t want to be consumed by the diagnosis too… like my sister I’m single no kids and young which has its pros and cons… and though meeting up with people both known and unknown is going to be tough and very limited being involved and active to alternatives like these groups is something I need to keep me going…

Seriously although I’m still getting used how the buttons and links work of notifying people and attaching them to my replies … I am so thankful of how welcoming you all have been since I joined this morning and posted my first post…

Thank you again to you all x

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HI again @Rammie18. Just wondered if you have had any advice from Occupational Health. You can request a referral. I know these may be thigs you have already done but just thinking of ways to support you to help you make ou decision.

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You’re a star @Nichola75… I didn’t think about that… mentioning the C word and reiterating was past issues has kinda taken them to take a bit of a supporting stance at the moment… but yeah I will defo think about that if (touchwood I don’t) come into a similar situation as before.

I was wondering with PV is it better to be primary or secondary… I know the difference just don’t know if one is worse than the other??

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Let us know how you get on with work. I can’t help you with the medical question - your medical team are the best for that. Write down all the questions you think of so you’re ready to ask at your next appointment.

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Brill… thanks for letting me know and I will do… @Nichola75

And I will do… in things like things you need to know who’s looking out for you and you alone.

Thanks so much for all the support… feeling better knowing I have this :slight_smile:

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Hi like you I to have PV been on clinical trials for several years taking Ruxolitinib which has really helped maintain my levels and has really help me lead a normal life until Covid need to keep the self distance and be alert have been self shielding but now back to work the only thing I can say is your not alone and this group is amazing and will give you support take care

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Hi @Ronald, how has it been going back to work for you?

Hi strange at first Though when in delivery office I wear a badge saying high risk social distancing which does occasionally remind people that we are still in the middle of a pandemic and the virus hasn’t gone away so I carry on being cautious hopefully we can all get through it take care

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Hi @Ronald, it must have been strange going back to work, I am glad to hear you are wearing your badge, yes, at least it is a reminder to others…sometimes.
take care and please keep ‘posting’ how you are getting on.

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I think the badge really helps as a reminder to people. Hope it continues to make people think about Social distancing a bit more!

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Hi Rammie,
I was a secondary school teacher and understand the pressure you are feeling about work. I had a department of 16 staff and also GCSE groups too. It is a fabulous career but definitely all consuming. When I was very ill I found that initially it was better for me, and the school, to initially take time off. The school then planned for continuity of staffing for the exam groups and they did not plug the gaps with cover teachers who were different each lesson. The kids were happier and I did not get continual phone calls and questions.
When I was diagnosed with leukaemia I was given the phone number of the MacMillan cancer nurses who worked at my hospital. They were a huge support, able to tell me to come in immediately when I ran a temperature and informed the Team that I was coming in, they answered some questions and sorted out confusion over missing prescriptions. If you are lucky and have some at your hospital they are a useful resource.
Good luck with everything, it will get clearer with time and if you are a teacher you are a bright and adaptable person and you will get that confidence back soon.
Jo

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@GrandmaJo

Aww thank you so much for replying to my post. And though I am so sorry to hear of your diagnosis it is great to hear from a fellow secondary school teacher.

I’m definitely aware of the backlog and pressures hospital staff and departments are under but I’m so lost with where I am at and what plans are so looking ahead is proving really tough. Especially when I have first hand experience of having a sibling and others very close to me suffer and suffer quickly with cancer. I count myself as a strong and independent person who probably thinks about others feelings and position more than my own… and though I do need to start looking after myself… I’m finding that really tough to do…

Thank you for advising using the Macmillan services they were brilliant for my sister abeit a short encounter. I will look into it.

I hope you are ok and coping with everything @GrandmaJo.

Take care and thanks again for taking the time out to read my situation . Much appreciated x

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How are you feeling about the work situation @Rammie18? It sounds like a difficult decision to make with lots of things to factor in. It’s good to hear the school are being supportive although I’m sorry that they let you down with this in the past - that sounds so stressful.
It’s so important that you look after yourself and do what is right for you, but I appreciate that it’s not that easy to know exactly what that might be right now! Have you talked through with your clinical nurse specialist or consultant the sorts of things to expect like appointments etc, so that it might support you in making a decision?

Hope you’re okay @Rammie18, do keep us updated

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@Alice_BloodCancerUK

Hi Alice

Thanks for checking up on me… Much appreciated…

I had my second venesection today and as always had some lovely nurses who everything so calm friendly and easy.

I emailed my clinical nurse that I was in hospital and that I was having treatment and she actually came down to meet me while they were taking my bloods out.

It was such a relief speaking to her face to face (well with masks which though I’m totally wearing and encourage all else to do same… I really miss showing and seeing facial expressions… I do a good wink to show thanks but I know that this can appear a bit pervvy too… Ah modern etiquette!!) It’s still early days to know what the plan is and how regular my venesection are going to be (I wonder if they test the blood they take out to monitor my hct count) but I have been given another appointment with my heamotologist early next month. She confirmed that once the hct was at the required level .5 I think then because my platelets is high that I’ll start on hydrodroxyruea and that it’s a very mild and kind form of chemo and will be tablet based. The only procaution that I should keep my distance between flu sneezy and coughy people and though they be extras for snow white it has made me feel a bit anxious about being at school but I’ll deal with that when the time comes.

Unfortunately there are no support groups locally and the nearest one is about 30miles away though it may not be running due to covid… but she was impressed I had responded proactively and signed up and started a conversation on here to which I wonder if all of your ears were burning with all the superlatives I was telling her.

I’ve had a tough few days to be honest. I feel like my body has given up and my mind is reacting to that and then sometimes my mind has given up and it’s my body reacting to that. It really doesn’t help when you are trying to answer the question how you are feeling. I waiting for my psychotherapist to return on his hols but speaking on the phone is really tough. I’m such a face to face person because it’s easier to read the reactions but also for other to read what your not saying or finding though to say.

I keep playing in my mind whether to be telling more people but then I feel really bad that if I do how my family would feel when they find out that others knew and that they wouldn’t understand why I kept it from them… if I was in their shoes I would be irrate being the last to know.

I know I should be grateful of the cancer I have (in that it could be more aggressive) and be thankful of my situation (no wife or kids) but still I feel something’s been robbed like a child whos been picked last type of feeling. I know I still get to play but it’s like if this is the circumstance then do I still wanna play?

I just really don’t know how I feel both mentally and physically… The only thing I’m doing is going to sleep in hope that I feel better when I wake up and a cycle begins…

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