Hi all, I was diagnosed with ET earlier last month and just joined the group. I’m 21 and a student nurse and I hope to work in oncology once I qualify.
I have chosen to join this group to speak to people that are in a similar situation to myself- in the unknown I suppose, just waiting to find out what comes next. There’s nothing quite like being told you have cancer and it would be really great to speak to people with a similar experience.
Hi Jade777 and welcome to this corner of the Community. I am Mike and I help out around our blood cancer groups.
I don't have Essential thrombocythaemia (ET) but I was diagnosed way back in 1999 with another rare, incurable type of blood cancer Stage 4a so I do know this journey rather well.
In the early days it’s all about understanding the condition and once you get more information and talk with others the journey will get more understandable.
So let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Main Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and each centre do run monthly Heamatology Support Groups most are online at the moment….. the one i attend does have a few folks with ET in it so worth checking.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.
You may also want to check out MPN VOICE UK for some good information and have various support platforms.
Always around if you need further help or just want to talk.
Hi Jade777. So sorry to meet you here. I’ve had ET since 2019 and have found the MPN Voice community really helpful. There are lots of videos for patients as well as occasional group meetings around the country. I’m hoping to get to the one in Inverness in September although there are other ones in England and Wales earlier in the year. There’s also a new forum for young patients so maybe you could check that out as well.
Are you taking hydroxycarbamide? I got a few side effects in the first year (mouth ulcers and stomach issues) but they went away, although I have some other things that have cropped up but are being investigated. The main thing I’ve noticed is fatigue and that was what took me to the doctor in the first place. Everyone is different though so you might be fine. That’s wonderful you’re working towards being an oncology nurse. Huge respect to you! I hope you’re getting all the support you need, from family and work, and certainly you’ll get loads here.
Please stay in touch, and I wish you all the best. 
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Skaro
Hi Skaro I just noticed that you must be local to Inverness, I am also in Inverness.
The Maggie’s Centre at Raigmore run a monthly Heamatology Support Group (Online at the moment) but there is some great support in the group and from time to time there are a few folks with ET in the group - worth checking this out….. it’s now on a Wednesday so I can’t go as I have another commitment on a Wednesday.
Ah ok, as these groups are online at the moment there are folks from far and wide on the groups, we had someone from London at one point but lots of folks from the West Coast and the Western Isles 
