Hello so I was diagnosed with Essential thrombocythemia in roughly around 2017. I was 21 years old then. I started with having just aspirin for about 2 year then I went onto hydroxycarbamide for the rest of the time. I stopped taking that in September this year as I was really struggling in every way. I have recently taken my forth injection of interferon, for 3 weeks I felt awful but I guess my body is now starting to feel OK again now. Mentally I am struggling as I have work, a 9 year old and a busy life that goes with both things alongside having OCD and panic disorder. The fear of not being there for my son is heightened due to loosing my own mum to cancer at the age of 2. The fear of dying is massive So I guess by me joining this support community I wanted to reach out to similar diagnosis and communicate with people who truly understand. To potentially find positive ways of dealing the lovely hand that i have been dealy.
Thank you for taking the time to read this
Hi Alice1810 and a warm welcome to the Online Community but so sorry to hear about your ET diagnoses.
A cancer journey is such a stressful and challenging time but you have done the right thing in reaching out to a place where you can ask questions and getting support from others who are on the ‘exact’ same cancer journey.
I was also diagnosed with a rare blood cancer way back in 1999 so understand the challenges.
The Community is divided into support groups (discussion rooms) so can I recommend you join and post in our supportive MDS/MPN/ET/PV/myelofibrosis (MF) support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
If you'd like to connect in with a group click on the (Bold) Group Link I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits/financial guidance or just connect with a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
We also have our Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.
Do get back to me if you need further help.
