Wednesday, January 31, 2024

We Don't Get to Ring The Bell

Back in July I wrote a post about some books I thought were worth sharing. They were not specific to CML except one but all worth reading in my opinion.

I just recently read this book by Anne McAuley Lopez who is living with CML. I really enjoyed it. If you are curious about what it's like to live with CML this is the one book to read.

It can be easily downloaded or purchased through Amazon - Kindle. 

We Don't Get to Ring the Bell

If you do not have an amazon account or use kindle or kindle app, reach out to me and I may be able to help.

Monday, January 1, 2024

New Year, New Beginning…….New Direction?

What was the idea behind starting this blog? 

I have told this story before but I think it needs to be revisited to understand my thought process.

When I was first diagnosed in 2017, I did not feel like I was given a lot of support from my medical team. I spent weeks scouring the internet looking for answers and hoping to find someone else to talk to.

I did finally managed to connect with Lisa who runs the Canadian CML Network. She sent me some information and was able to connect me to someone that lived closer to me. I can tell you, that made all the difference to me. So much so that my husband and I made a plan to travel to her city to meet in person. Lucky she lives in a great place to visit which is only about 4 hours by car. 😄

When it comes to CML we do have a few organizations dedicated to education and support. Here is a list of 3, but there are a few others as well.

So what more can I add? 

That's what I keep asking myself. 

My original goal with getting into patient advocacy was to help anyone newly diagnosed with CML have someone to talk to and help guide them to information. 

We all know you can head down a rabbit hole looking stuff up online. 

I will continue to share my story whenever I can but because I struggle with daily fatigue I find it hard to post as much on this blog as I’d like to, so it’s not really reaching as many people as I was hoping. 

I’ll be doing a bit more thinking over the next few months to see what I feel is the best direction.