Hi everyone, I found out 4 weeks ago that I have Essential thrombocythemia (ET). I’m 48, 2 children, and it has come as a total shock if I’m honest.
I’m in that place where I found out, fell to pieces, told the kids I have sticky blood because I felt like I was harbouring a huge secret but now wonder if I should be more honest (they are 11 and 13, one gets very anxious), then went on holiday and actually forgot! Now I’m back and am all over the place with my emotions. Tried a support group because everyone told me to and it put the fear of god in me and so I’ve come off of there now.
I want to be on this chat but I also don’t. I don’t want to accept it, am just starting to feel angry about it, but also need to normalise it.
I was privately diagnosed but private now won’t cover me and I’m waiting for my first “telephone call” on NHS. Gosh I actually sound a bit bitter writing this which isn’t like me at all!
I hope to get some sound advice or words of wisdom from other people going through this. I find it hard to accept that I’ll always have it.
thank you for taking the time to read. I feel like I’ve just off loaded and I hope I don’t sound too negative.
Welcome to our community and thank you for your post.
We are so sorry to hear about your diagnosis of Essential thrombocythemia (ET) and can imagine this is a challenging time for you. Please know that you are not alone and should you wish to talk through things with one of our support services nurses, you can call us on 0808 2080 888.
We are sorry to hear how you have been feeling since your diagnosis, though it’s totally understandable. Do keep your treating team updated on how you are coping as it’s important they’re aware so they know how best to support you.
In case it can be useful for you, we have a webpage on small things we can do to support our wellbeing during challenging times. It talks through where people can access further support including psychological therapies, your team will also be able to help with this if you felt it would be helpful - Blood cancer: mind and emotions | Blood Cancer UK
It can be difficult knowing where to source information from or which support groups are most helpful, we have a lovely community here and hope someone can reply to your post and share their experience with you.
Another helpful service we offer is the ‘newly diagnosed’ emails, there are only 7 in total. You will be sent one every week, and they can provide great information for the first couple of months after a new blood cancer diagnosis, each one is different in content but will cover 'what to expect, consider or ask in your appointments, as well as practical tips and advice.’ You can sign up for these if you would like via our link sign-up-for-blood-cancer-support-by-email
Take care & warm wishes,
Emma (support services nurse)
Welcome to the club that non of us want to be part of, but we are and here for each other.
I was diagnosed nearly 2 years ago and still havnt told my children and they are in their 20’s! Purely because they would just hear the C word and think the worse. I also feel bad about this but at the moment I don’t feel I need too they know I have a blood problem and take aspirin maybe when I take other meds I will tell them but who knows
It’s so tough when you have children isn’t it. I was diagnosed with follicular lymphoma in 2017 when I was 42. My children were 11 and 8.
At first I told them I had something wrong with my blood. I had to have radiotherapy and told them I had to have my blood zapped to make it better. I had to have an op before the radiotherapy which was hard for them to see as it left a huge wound on the side of my face.
I kept it quite simple. In hindsight and through conversations with the girls, they knew it was more serious than that. However, I didn’t beat myself up for not telling them everything. I think I did what myself and my husband thought was right at the time. There is no right or wrong time or way to do it. Everybody is different x
Thank you, I think I’ve probably let them know all they need to know for now too.
I just need to take the time to wrap my head around the diagnosis for now. Reading all the info on it makes me anxious but knowledge is good as they say. It’s just scary and makes me panic.