Hi Martina,
Yes its a lonely place having CML. Doctors just presume you'll be fine which most of us will but we have another battle going on psychologically. It's one thing having a serious life threatening disease but being told you'll have one for life (Best case scenario) is a difficult pill to swallow. (No pun intended) I am by no means complaining as I know many Cancer sufferers would probably swap their illness with ours in a heart beat but it's all relative isn't it.
I can completely relate to these comments "I was scared and afraid to look up anything about it, afraid to ask questions incase I couldn't deal with the answers. I didn't trust my body anymore I felt like I didn't know who I was, I felt there was an enemy living inside me" I am feeling exactly the same. I too have 2 small children both girls aged 5 and 8 and its hard having to pretend all is ok. As far as I am aware since my last results I am doing well. My 6 month PCR was 0.7% so I am hopefully on the way to achieving MMR by April next year (My 1 year anniversary). It is all very anxiety inducing and has made me on high alert, any odd sensation, change in my body, pain or ache really makes me nervous, I believe I have suffered from anxiety for many years and since diagnosis its increased somewhat naturally, I don't want to go to the doctors for the anxiety as I believe I can handle it through more natural ways. I am doing all I can to stay on top and most times I cope pretty well, I meditate daily which really helps to slow my mind and I've started running again to release some of those natural happy drugs lol. I will get there one day.
I am really hoping that someone would like to meet up, as I said I think its something positive and a way to give something back. I want to start the year feeling at least good about myself as its stripped a lot of my old self away. I do feel a part of me did die when I got my diagnosis but I am trying to create new ways to cope, to accept and move on from what is a very traumatic experience which I am sure many can relate too. I am 38 years old and not afraid to admit I have cried a lot on and off its certainly a rollercoaster of a ride. Hopefully with some adjustments and some new friends to have some nice conversation not just doom and gloom is a great way to help all of us smile again.
You take care. If you ever also need to talk my email is alexmcpherson1980@gmail.com I am always here to listen to anyone.
Alex