I'm new to the Macmillan Community, I was diagnosed with Essential thrombocythaemia via genetic testing in August last year and since then have been trying to get a handle on my symptoms from both ET and the ME I've been diagnosed with since covid. I'm absolutely exhausted all the time, my bones ache almost constantly now when that only used to be a every other day thing, I have no sense of balance any more, I get overwhelmed so easily by sensory things and just concentrating on anything is a real challenge.
I used to be the provider for our house, my wife & my daughter have special needs of their own and I was the carer for both of them and now my daughter comes with me when I want to walk around the block in case I fall down, she also does all the cooking now because a few times I totally forgot what I was doing.
I guess I'm still learning to find a balance and thought I'd find others who understand how lonely it can be stuck on the couch.
Hi Sp4rkR4t and a very warm welcome to the Community but sorry to hear about ET diagnosis and the challenges you are dealing with.
Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot. (I have lived with and been treated for a different very rare type of blood cancer for over 25 years).
This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you join and put up a post in our dedicated ET support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link below…….
MDS/MPN/ET/PV/myelofibrosis (MF)
…… then once the group page opens you can introduce yourself by putting up your very own post by clicking [+ Create new post]or [ + ] in the top right of the group page.
You can copy and paste the text from this post into your new post.
You may find it helpful to call the Macmillan Support Line 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.
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 give support to all the family.
Do get back to me if you need further help navigating the community.
