Reflecting Back on September

Last updated: November 2018

It happens every September. I don’t think I was really aware of it until I became involved with a charity over here called Bloodwise (formally Leukaemia & Lymphoma Research). This, of course, could be a lie.... time and my memory. Well, they don’t always tally up to be entirely accurate. This year has flown by, so I might have known about Blood Cancer Awareness Month before last year or the year before that. But I’m not sure I did.

Social media and spreading awareness

Of course, social media is now huge! When I was diagnosed in 2007, there was Facebook accessible by a select number of universities in the UK and I’m pretty sure hashtags weren’t really around then. I didn’t join Twitter until 2011 so that might not be true. Hashtags are huge awareness machines now.  When I first joined Facebook, it was a place to put photos of nights out and arranging the next one…  There were no adverts, business pages, etc. and not everyone could join it.  For awareness days/weeks/months, social media is an amazing tool.  If you remember to use it…

Anyway, I digress. Back to blood cancer awareness month. I don’t really resonate with it in some ways, possibly because, to me, every month is blood cancer awareness month. Every day is CML day to me, which also happens in September and I basically missed that one this year too. Living with a chronic blood cancer, I spend loads of time telling people about blood cancer and educating them. To me, it’s not just about one day or one month. Although, of course, having that dedicated time is amazing to get everyone together for the cause or however you want to describe it, to really raise awareness is so needed.   Especially with blood cancer.

I was recently able to have a treatment break because of starting a new drug, asciminib. It’s being used in a trial for most of those who are on it at my hospital. But not me. I have compassionate use as there’s no way I can tolerate full dose. So, most of September was amazing!!!! I was me again. I wasn't exhausted. I was able to have a social life. I had friends over for dinner on a Friday night AND did all the cooking that evening. I haven’t been able to do that in around 8 years. So that was HUGE. And when I saw my consultant, I could say I felt good! Which was true. They were amazed and I think shocked!  In a good way, of course.


Back to reality

Today, I’m not so great. I have written about that separately, so I won’t go into it here.

So for me this year, Blood Cancer Awareness month was good.  Even though I basically did f**k all to promote it! I was happy. I was me. I could raise awareness through starting a drug that’s brand new. It’s exciting to have been able to access it. To see how it is. To hope.

So today. I hope the fatigue is a blip of doing too much. And I hope I have been able through my social media and blog posts to educate and teach those about blood cancer. About a rare and unusual blood cancer. About a chronic cancer. And that it’s made a difference.

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