I was recently diagnosed with Polycythaemia Vera (2 months ago) and am still getting used to my diagnosis and the ins and outs of this condition.
I had a real wobble last week and was convinced I was getting ill again as I have had several symptoms like headaches, fatigue, eye issues etc. I had had my first phlebotomy appointment 10 days prior to this but hadn’t heard the results so I telephoned the hospital but had real difficulty in speaking to anyone to ascertain results. I telephoned again after a few days to ask again and unfortunately the receptionist I spoke to was very dismissive and unhelpful, even at one point questioning whether I had phoned previously, and refused to put me through to anyone else to discuss the matter. I eventually had to phone the suite where I had had venesections and I broke down in tears as I was so worried and stressed. They were very kind and got the situation sorted as a nurse phoned me back that afternoon and asked me to go in the next day to be checked out. The nurse said that I needed to tell them when I rang if I had symptoms so that I could be put through to someone otherwise they wouldn’t know to get back to me urgently but this is what I had done and I had still had to chase them.
I went to the hospital the day after speaking to the nurse as instructed, and my results are all fine but I am going back next week just to double check levels again and am also awaiting a CT scan they ordered just so they have a baseline and can check nothing else is going on.
Right now I feel completely overwhelmed and I know that my healthcare team are all trying their best, but it was a comedy of errors with results not being sent out efficiently due to staff shortages and me exhibiting symptoms and I completely panicked as I felt wretched for months prior to diagnosis and didn’t want to go back to that.
This is all so new and the information and communication is slow in coming so I don’t know a great deal about the condition. I haven’t been assigned a specialist nurse, although this may be the person I spoke to last week, so I didn’t have anyone specific to raise concerns with or talk things through with and the receptionist I spoke to simply said if I hadn’t heard anything it was probably fine whilst pointing out they had no medical expertise! When you’re newly diagnosed that’s not helpful and whilst it may be everyday to them it’s all still very new to me and I am hyperaware about any potential symptom and am consequently concerned.
I now feel like I was an utter drama queen and feel so embarrassed. I feel like I’ve wasted everyone’s time and NHS funds when the NHS is under pressure anyway and that I’ve completely overreacted. I’m just so unsure of everything at the moment which is exacerbated by the fact that until recently I’ve always been super healthy, never really had much illness, and haven’t had a day off sick from work in 14 years (the last time being when I broke my arm).
Hi @CarolineL a great big welcome to our forum and you are not on your own now as you are part of our form family.
So many parts of your posts resonated with me and those thoughts and feelings when I was first diagnosed 19 yrs ago came whizzing back to me.
I had always been super healthy for the first half century of my life too and hadn’t had a day off sick in about 25 yrs too.
I think since my diagnosis my thoughts and emotions have been on a high alert rollercoaster.
It is so difficult isn’t it when our symptoms might be something or nothing, but I always fear something of course, I believe in always letting my medical team know so they know what is going on with me.
I also feel since diagnosis that I have spent so much time waiting on others.
I was also still in shock for ages after diagnosis it was certainly not in my life plan.
I felt your words ‘When you’re newly diagnosed that’s not helpful and whilst it may be everyday to them it’s all still very new to me’.
Please don’t feel embarrassed and that you have wasted NHS time, your actions, thoughts and feelings are so natural.
I look forward to hearing more about you and if you would like to talk to someone the Blood Cancer UK support line on 0808 2080 888 is there for you
Look after yourself and be very kind to yourself and please keep posting
Hi @CarolineL and a big welcome to the forum. I’m so glad you posted as you will find so many people who really do understand how you are feeling. As @Erica, I remember those first few months - 7 years ago - like they were yesterday. It is the most overwhelming feeling which brings such a range of emotions which rollercoaster all of the time!
There is no such thing as a drama queen when it comes to our health. It’s natural to worry about getting worse and every small symptom always turned in to something bigger in my head. The support line are just wonderful and it may be worth you giving them a call if you feel you can.
Please keep posting and let us know how you are doing X
I was diagnosed with Polycythaemia vera (PV) almost 3 years ago.
Your medical team should always be informed on how your feeling physically, mentally and emotionally but I’m happy to answer any questions you have from a patient perspective
Take care and be kind to yourself
You’re not alone in this
@Erica - Thank you for your kind words and understanding. You’re absolutely right that you become super aware of any symptoms and always think the worst. I think that the medical teams get so blasé about it all as they deal with it day in and day out and consequently they sometimes forget that for the patient is it all new, scary, and super emotional. Add to that information being drip fed and it’s easy to soon feel overwhelmed. I’m trying to be kind to myself and allow myself these occasional wobbles as I know it’s to be expected but I’m an overthinker at the best of times so when there’s an incident like above I end up chastising myself and feeling chagrined!
@Nichola75 - Thank you for your understanding. I know I should be kinder to myself and not beat myself up over something which although manageable is life-changing and will now always have to be a consideration. I’ll certainly consider the support line in the future, but again only recently discovered the existence of this forum and other support services.
@Rammie18 - Thank you for understanding! It’s just a lot to get used to and it all happened so quickly that it’s been a whirlwind from diagnosis to now and I’m still not au fait with how it all works and timelines etc. I’m sure I’ll get there but it is a lot to take in to begin with.
Gosh @Rammie18. Three years - where has the time gone?!? How are you keeping ?
How are you doing @CarolineL?
Hi and welcome to the forum. You have found the right place to be amongst people who understand exactly how you feel. It’s a very confusing and worrying time when you are newly diagnosed and everyone responds differently there are no rights or wrongs. I’m coming up to my first anniversary of Chronic lymphocytic leukaemia (CLL) diagnosis and vary between worrying and acting like nothing is wrong as I say we are all different and that’s fine. Just take it a step at a time don’t worry that you are wasting anyone’s time I am a nurse myself so can confidently say that you are not. Don’t be afraid to reach out and ask questions if you need to. You take care x
I know right it’s crazy…
Thank you for asking… been crazy busy with my year 11 class and getting them prepared for their exams, my YouTube channel and work are now putting a bit of pressure of what I’m doing. I still have no idea.
Mentally and physically been all over the place but I’m keeping afloat.
Hope you’re ok
I can imagine it’s a really busy time for you work wise. As long as you are taking care of yourself?!?
@Nichola75 I’m doing OK thank you. I’ve been to the hospital again today for a follow up blood test and I’m now on the cusp of my threshold so may need another venesection soon I suppose although right now I feel fine. My iron levels have dropped but they said that can happen when you have had a lot of venesections in quick succession so they are just deciding on treatment for that - i.e. to let it try and rebuild naturally or put me on a low dose of iron temporarily.
@KayC - Thank you so much for your kind words. You’re right that it is a confusing and worrying time and emotions are certainly up and down. Good to know that as a nurse you understand and don’t think I’m wasting anyone’s time. I’d hate to be labelled as some sort of difficult patient but there’s so much to take in at the beginning that it can all get on top of you very easily.
You take care of yourself @CarolineL and please keep us updated on how you are doing