Blood Cancer Awareness Month

I have all these words circulating in my head at the moment.  I probably should have done this earlier today when I wasn’t quite so fucking exhausted.  I am at my parents, I’m meant to be having a week of but spent all day at my laptop on Tuesday and today, I have been at it since around 12.30ish.  Not really the plan, but what happens when you are self-employed….

I also haven’t been sleeping well either.  Not sure why.  It’s not the heat which bothers so many.  Not me.  I’m a lizard, I run at least 10 degrees colder than most and love the heat!  I don’t care if it’s hot at night and if I do kick my duvet off to begin with, I always wake up under it in the morning.

Running.  I have started that again since I got home and actually had an amazing run on Monday which surprised me after three weeks off.  I thought I would have lost all my fitness, but I really haven’t.  I went again yesterday.  I had my doubts about it as I didn’t sleep brilliantly well but thought I would feel better for it.  I spent a lot of the run thinking ‘you are a fucking idiot.  You should have done 2 flat miles around the village, not the very hilly 4.43 mile run to the next village and back which means it’s a fucking long walk if you don’t run.  You fucking moron.’  I did finish the run and only a minute slower in total than on Monday.  Which also surprised me.

Sleep. I don’t really know why I’m not sleeping properly.  Maybe it’s the wind down.  Maybe I needed two weeks off.  This is the first ‘break’ I have had since last October.  It’s weird being self-employed.  Yes my time is my own.  I dictate what I do, yet I seem to spend more hours working than many.  Or maybe that’s because I make up for lost time at the weekends so often spend a large amount of Saturday and Sunday doing what I didn’t get finished during the week.  Or I know people who are very good at switching off and leaving work at the office.  Maybe I need to get better at that.  I should relax a bit.  There is a bit of money coming in.  Not loads, just about enough to scrape through all my bills and to eat.  Not much more.  In fact, definitely not more.  My choice for living on my own.  I need it though.  I need my space.  I need to be able to go to bed at 9pm and to not be disturbed.  I think if people knew how much I lived in they would be amazed I walk around smiling.  But.  It motivates me to keep going….  Well also and the fact I love my job.  It’s fucking hard work though.  If you want to know what I do have a look (and ‘like’ it if you want) at my Facebook work page – facebook.com/harleystreetnaturopath

And I do all of this whilst living with cancer.

So.  Blood cancer awareness month.  I have so many words about this, but they are all a bit stuck.  I’ve also been feeling a bit emotional today so I don’t know if I can truly get out how I feel or I will just sit here and cry.  But maybe that’s what I need to do.  I just don’t know.  How do you sum up living with an invisible chronic cancer?  And also one that basically no one has heard of?  Fun fact:  Blood cancer is the 3^rd biggest killer and the 5^th most commonly diagnosed (thank you Bloodwise for the facts), yet, if you looked at all the dirty advertising on the tube and trains etc you would think there was basically only breast cancer.  How do I represent all of those who live with a blood cancer that I know nothing about and can’t even pronounce?!  There are over 130 types of blood cancer by the way.  Bet you didn’t know that either.

And also, I don’t even know how to represent the others with Chronic Myeloid Leukaemia (CML).  I don’t know how they feel.  Are they ok with living with it forever?  Do they feel lucky about their diagnosis?  Do they feel the same side effects as me to the chemo?  Are they content to take chemo for the rest of their lives?  I don’t know because I stay away from Facebook groups and other support groups.  I have to live in my little bubble.  I can’t take on how others feel, which is what I do, or I won’t be able to get out of bed.  I won’t be this ‘inspiring’ person that people seem to view me as.  I’m very happy to be seen like this, but, I’m just me being me the only way I know how. So it’s a bit weird people think that.

So I think I will end this with something that I wrote for Bloodwise but have changed it so it’s different.

Chronic blood cancer is a funny thing.  I have lived with it for nearly 10 years and it’s only been in the last year or so that I have associated with it being a blood cancer.  Since Bloodwise (formally known as Leukaemia & Lymphoma Research) found me.  I’m ‘user friendly’ visually, always have been and I often forget that I live with cancer and then it hits me like being smacked in the face.  And I usually cry with the overwhelming-ness of it all.  That the pill I take every evening is in fact chemotherapy and keeps me alive.  It’s completely surreal.  My big thing is the ‘chroincs’, and the ‘lost tribe’.  Those diagnosed between 16-24 and no one really knows it’s an age group that gets cancer.  And now extending it to those in their 30s.  The chronics because we look fine but aren’t.  We don’t have an intense year or 18 months of treatment and are then given the all clear, or not.  We don’t necessarily have intravenous chemo, radio therapy, lose our hair and wear a wig.  We are forgotten about.  Not known about, yet our need is arguably the highest because it’s for life.  Cancer at 22 wasn’t a year or 18 months of treatment for me.  It’s for life.  And it impacts on everything.  It sits there quietly in my blood, circulating my body all the time.  I’m not angry about it.  Well.  Not most of the time. Sometimes I do have brief moments of ‘why me’.   I certainly don’t hate it. I can’t.  If I did, I would hate myself.  I wouldn’t change it, too much good has happened because of it.  And as I said in my Bloodwise video (https://youtu.be/jbUqoZlfZc4).  

‘Don’t let cancer define you but let it shape you. It’s not all of me but it’s a part of me’. This is why people need to know and understand more about blood cancer, specifically meaning, Chronic Myeloid Leukaemia.