When introducing my diagnosis the Consultant said “this isn’t life limiting and can be managed”, with an explanation of the impact of Hydroxy.
Within two weeks of the diagnosis I’ve had a call from my lovely supportive nurse to see how I was getting on. It was a bit of an odd call - totally unexpected and made while I was making dinner but at one point she said something like “I know the diagnosis can make planning for the future difficult”.
To me the the statements from the two health professionals don’t match up and I’m less confident about my diagnosis than I was.
Firstly welcome @Linjbil to the forum!
I totally empathise with mixed messages
Though I have a different blood cancer I too received mixed outlooks on my diagnosis and though I understand their thinking “is it better to instil a positive outlook” or “prepare you for the worse case scenario”?
Depending on which or how you’re wanting to look at it, you’ll be naturally dismissive of the other.
Like with Essential thrombocythemia (ET), is not curable but manageable and if monitored you can continue to carry on as you were but I think it’s a blow to something you think was impenetrable.
I think your specialist is correct in what they said as too your nurse is being supportive in case the label of “cancer” or that you have a “condition” has placed a bump or potentially added some road works on your journey.
Hopefully, and I’m very sure they will, fellow patients of Essential thrombocythemia (ET) will post their experiences of their diagnosis to give you reassurance and guidance and advice through these initial times that will give you some clarity and comfort.
Thank you for a balanced response. It’s exactly what I’m looking for at this moment.
Hi @Linjbil a great big welcome to our forum, I hope you will find it supportive.
I also have another blood cancer, but I do not think it matters.
Since my diagnosis my thoughts and emotions have been on high alert and I diagnose every word that is said to me by a health professional.
This is a very personal response, not a medical one.
When I was diagnosed I had probably been told the same sort of thing that your Consultant said to you, but I came home and immediately wrote my will and funeral music (this was 19 yrs ago). My thoughts were that I would never see my son married or have children etc. and that I could not plan anything in case I got ill or I was having treatment etc.
Perhaps, and I could be wrong, but your lovely supportive nurse assumed that your thoughts were along the same lines as mine as opposed to checking your fears and thoughts out.
Have you got a contact number for your nurse, if so perhaps you might check out with them what they meant. Your nurse is your main contact so opening honest communication, I personally think, is really important.
If you would like to talk to the Blood Cancer UK support line on 0808 2080 888
Just look after yourself and be very kind to yourself and please do keep posting as I look forward to hearing more about you.
My reaction on diagnosis was obviously different. Normally I’m a worrier, though usually about others rather than myself. My raised platelet count was identified at the beginning of the year but has made no difference to my life, ( Other than the multiple hospital appointments trying to find a cause!) so when I was told that Essential thrombocythemia (ET) was not life limiting I decided that life would continue unchanged as far as possible. I think that in anticipating and trying to support a different kind of reaction, and she was extremely supportive, my nurse accidentally made me see things differently.
Talking here and with family has helped, I just need to manage the balance between the two different outlooks!
Hi @Linjbil . I wouldn’t worry too much about the terminology and choice of language used by your cns. Remember they are not consultants. I have Essential thrombocythemia (ET) and the difficulty that I have encountered when planning for the future, is trying to fit in things around hospital appointments. Eg, holidays. Listen to your consultant and write down and ask any questions that you need to ask. The one and only time that I saw my CNS, she gave the wrong medical information, while I was in conversation with my consultant,which fortunately the consultant picked her up on immediately, and put her right. Apparently she had been giving this misinformation to other patients for some time, which just goes to prove that they don’t always know as much as the patients who have the disease. Try and learn as much as you can about Essential thrombocythemia (ET), and that will help you sort the wheat from the chaff advice without taking on board any misinformation that might give you stress.
Hey there @Linjbil, I’m so sorry to hear you’ve been diagnosed with Essential thrombocythemia (ET). I’ve got a similar Myeloproliferative neoplasms (MPN) to you called Polycythaemia vera (PV) (hey there @Rammie18, Polycythaemia vera (PV) brother!). I was recently diagnosed and didn’t have any symptoms before diagnosis.
Unfortunately, like you, I was also given contradictory information from different medics at first. It was my haematologist telling me I did not have blood cancer, and later that the hydroxyurea he’d prescribed me was not chemotherapy. Confusing. Thankfully the phlebotomy nurses I see regularly have more accurate information and advice!
I’d say do as much reading around your specific diagnosis as you can deal with, but don’t randomly google stuff. Look up blood cancer organisations and charities and trusted medical websites that are verified by doctors as they’ll have more accurate, current research and information.
I’d also add that having a chronic blood disorder is bound to bring up all sorts of strong feelings, and it’s all valid. I felt really existential after my diagnosis and still do on occasion! Our prognoses may seem positive, and thus shouldn’t we feel good about that? But actually it’s still something major and life-threatening that we need to suddenly adapt to and learn to tolerate living with.
Like @Chris1 says, it can be annoying fitting our lives around so many medical appointments. What you might find is that once your blood levels are within your target ranges you’ll need fewer appointments. Will you need phlebotomy as well as hydroxyurea?
Be well, @Linjbil!
Thanks for replying Duncan,
It’s hard to believe that it is only four weeks since my diagnosis = so much has changed and nothing has changed!
Apart from taking the toxic tablet outwardly nothing is different. Inwardly, I am accepting the diagnosis (It’s good to hear that you too still have existential days) and I have learned a whole lot that I knew nothing about previously. The hospital were good about providing reliable resources, which has helped and hearing from people like yourself definitely makes a difference.
I’ve only had one blood test so far and am not due a review for another two weeks so it’s early days but i’m getting there!
Thanks again for responding.
Aw it’s my pleasure, @Linjbil. This forum is so excellent for finding empathy and advice. Don’t know what I’d have done without it, to be honest! Really glad you found it too.
You’re so right about how it feels like so much changes after diagnosis. For me it’s felt like a before and after and never the twain shall meet. It struck me that I was grieving my pre-cancerous self and that helped a lot when my moods change randomly, like I’m going through stages of grief and that’s to be expected. I’m in a sort of angry acceptance of it currently.
Looking forward to hearing how treatment progresses for you, @Linjbil. Please don’t hesitate to come here to ask anything, there’s so many kindly folks at the ready to empathise with whatever we’re going through
Hi @Linjbil so glad that you are getting there, give yourself time I think there is a lot of adjusting to do and it took me a long while.
@Duncan has said it so well.
My emotions and thoughts are still on high alert 19 yrs down the line. I can burst into tears at something I would not have done before.
The main thing is that you really look after and be very kind to yourself and please do keep posting