I just wanted to share what has happened to me over the last couple of days.
After waiting 8 weeks for the results, it was confirmed yesterday that I have Essential thrombocythemia (ET), JAK2 positive. My platelets had gone up again to well over 900. The haematologist told me that the usual route is aspirin for a couple of weeks first, then on my next appointment I would sign the consent forms and start on Hydroxycarbamide. But, because my platelets were so high, he said he wanted to start me on the Hydroxycarbamide straight away, and I had my first dose this morning. After seeing the doctor, my husband and I then spent some time with the specialist nurse, who was really kind and supportive. I had done loads of research over the past few months, and was very well informed. In fact, during our discussion, she told me that much of the things I was saying, and how much I understood, was a lot of the things that she was going to be telling me. She also talked about the online help that was available online, such as this website, Myeloproliferative neoplasms (MPN) Voice and MacMillan Cancer Support, and gave me loads of literature to bring home.
Last night I was awake most of the night, with so many things going around my head. This morning I had a full-on melt-down. My poor husband didn’t know how to respond. Although I really knew what the diagnosis was going to be, and thought I was prepared for it, I suddenly felt really overwhelmed at the reality of it. It was like it had just suddenly hit me, big time, that this is a life-changing thing, something I am going to have to live with, life will never be the same again. Looking at the literature the nurse had given me, I was suddenly triggered by seeing words like cancer and oncology, and realising that this is me. A couple of hours later the nurse phoned me to discuss blood request forms. I told her about my melt down, and we had a good chat about things. She was so very reassuring, and told me that it was a completely normal reaction, and that they are there for me whenever I need someone to talk things through with. She also assured me that although it’s all very scary, especially at first, that I will be being monitored very closely, and that I am in very good hands.
Oh @Irene_Louise I am sorry to hear about your diagnosis.
Your comprehensive post really shows me how natural your reaction is and I was so touched with the response that you have had from your nurse.
Your poor husband, nobody has a manual of how to be in such a situation, and often everyone deals differently in situations, there is no right or wrong way.
However I think our forum is so supportive because some of us have been through similar situations, either as the patient or their loved ones.
Yes, the word cancer is really scary, I see things very visually, and I see it with zig zags around it.
I cannot get over your lovely nurse, yes, it sounds as if you are in very good hands.
The Blood Cancer UK support line is there for you on 0808 2080 888 if you need it and so are we.
Be ever so kind to yourself, give yourself time, everything has moved very quickly and perhaps consider doing what I didn’t well and keep communication going with your husband and really look after and be kind to yourselves and please do keep posting
Thank you for your kind reply Erica. You’re right about the nurse, she really is lovely.
I definitely will keep posting, because, apart from the support and kindness here, I have also found it to be very helpful to write things down; it really helps with getting my thoughts in order. So, if I ever seem to ramble, that’s why!
Thanks again,
Irene
Hi @Irene_Louise you ramble all you want, I find this is the one space that I can say how it really is for me.
Give yourself time to come to terms with things and be ever so kind to yourselves
@Irene_Louise
I was diagnosed with Essential thrombocythemia (ET) this year. Currently on aspirin.
After speaking to a few different consultants and my gp we have all agreed this is condition. We don’t use the c word anymore as this just makes people think the worst. And when I am out on other medication, that won’t be referred to as chemo.
Have to say I still have my bad days over thinking things but this seems to work for me and makes me worry less.
Out of interest where are you located?
Hello there @Irene_Louise, welcome to the forum. I’m glad you found it, although I’m so sorry you had reason to.
It sounds like you’ve got a great specialist nurse at hand and your husband too, but I just wanted to say you’re not alone with that Essential thrombocythemia (ET) diagnosis and I hope that the forum comes to feel supportive for you.
There are many folks here living with Myeloproliferative neoplasms (MPN) like Essential thrombocythemia (ET), Polycythaemia vera (PV) and MF (myelofibrosis). It’s been vital for me since my own diagnosis with a similar Myeloproliferative neoplasms (MPN) last year and much of how you describe your feelings now is familiar to me. Isn’t it rubbish?!
Just wanted to add that I love @Happy2019’s idea to give our disorders a name so we don’t have to keep saying the C-word. For what it’s worth, mine is called Bertie and it’s a bloody nuisance!
Looking forward to hearing more of how you get on @Irene_Louise, once the understandable shock of all this begins to subside. Please do keep us posted. Maybe keep note of what comes up for you and any side effects from the hydroxyurea as I’m sure your lovely nurse would be interested when you speak next.
Hi Duncan
Thanks for your reply. I really think it’s going to help me to be part of this forum - it’s helping me to realise that I’m not alone in this. Even though it’s only been a couple of days, I think I’m starting to get my head around it. I phoned the BCUK support line on Saturday morning and spoke to a lovely nurse called Heidi. She was so helpful and understanding, and as questions came into my head she answered them. I was worried that I was taking up too much of her time, but she reassured me that that was what she was there for. Honestly, she really helped to make me feel a lot better about things. It’s also so good to communicate with people such as yourself who understand what I’m going through. Here I am, rambling again! It really is a roller coaster of thoughts and emotions.
Oh you’re most welcome @Irene_Louise, I’m really glad the forum helps you feel less alone. You’ve no doubt seen many others living with Essential thrombocythemia (ET) and Polycythaemia vera (PV) around the forum and I’m sure you can find all sorts of helpful stuff when you fancy a look around. I love that you called the support line and I can well imagine how helpful Nurse Heidi was—she’s regularly here on the forum, sharing her caring expertise. You’ll see the BCUK nurses here most days, it’s lovely.
Make sure to take your time and feel what you’re feeling at this early stage. It’s a lot to take in and internalise. I remember how I was in a kind of shock after my diagnosis with Polycythaemia vera (PV) last year… but the shock gradually wore away as I got used to treatment. For me, learning about Polycythaemia vera (PV) stopped it being as anxiety-provoking, but I know others have different ways to tolerate their diagnoses.
As you’re finding writing so helpful, perhaps keep expressing yourself that way? Funnily enough I joined a writing group last year and a lot of anger spilled out that way. At the very least I’d say try to keep notes of things like changes in any symptoms and how your body gets used to medicines as this seems helpful when seeing our doctors and describing changes to them. They’ll look for patterns in what we tell them and in our regular blood tests, and our treatments will follow along.
Anyway, I’m rambling now but I reckon there’s no better place for a good ramble than here! Or maybe out in nature, but that’s a topic for another time. Do please feel free to ask anything that comes up for you @Irene_Louise.
Hello @Irene_Louise glad you have found this place to share all that’s going on with you and meet others in similar situations - as yes it takes a bit of time to get your head around a diagnosis and treatment doesn’t it but you are doing really well expressing it all here. I have Essential thrombocythemia (ET) diagnosed 18 years or so ago when I was in my mid 40s and was put on treatment straight away which was Hydroxy. I was on that for 13 years then had a few years on Pegasys interferon injections and recently I am back on Hydroxy as treatment. I say that to show many of us patients use the treatments for long periods of time and are ok on it and more importantly it works to get our platelet counts reasonable and keeps us safe A long time ago I took the view that something like Hydroxy, yes it’s a type of chemotherapy but I view it as a friend as it is silently working away to look after the blood cancer disease - and it does do that very successfully and I remember it as a friend even if there are times it has a bit of a kick but it’s still doing its job and keeping me safe and sound. I guess like others have said there are ways round how we see our condition and its treatment that feel more realistic than how you feel initially and you see many Myeloproliferative neoplasms (MPN) patients have dealt with the conditions for many years. You will too find your way around it all and keep letting us know how you get on and any other input you may need - all the best
A long time ago I took the view that something like Hydroxy, yes it’s a type of chemotherapy but I view it as a friend as it is silently working away to look after the blood cancer disease - and it does do that very successfully and I remember it as a friend even if there are times it has a bit of a kick but it’s still doing its job and keeping me safe and sound. I guess like others have said there are ways round how we see our condition and its treatment that feel more realistic than how you feel initially and you see many Myeloproliferative neoplasms (MPN) patients have dealt with the conditions for many years. You will too find your way around it all and keep letting us know how you get on and any other input you may need - all the best