First of all I want to thank you for your support since my last blog. I sit down and my words just pour out onto the page, and I know that they reflect all the raw pain and angst of this ride I am on, and must sometimes be terribly hard to read. They are however, my reality, and I appreciate you having the courage to read them, and to better understand me, and where I am at any given point in time.
You know the saying “What will you do with your one wild and precious life?” Well, I can tell you when that life is going to be cut very short, the answer can be quite hard to come by. It’s something I spend a great deal of time thinking about, as i don’t have any idea how long my visits to the poison pump can keep me alive. A gent in a bowel cancer group I belong to posted a photo on our forum last night of him checking in for his fourth year of “chemo for life”, and of course I live in hope that that will be me one day, regardless of the statistics being far from in my favour. The fact is, they probably weren’t in his, either. None of us know. So I, as I have mentioned before, intend to live as though I am going to keep on living. Mentally, for me, that is the key to doing just that.
Back in February I signed up for three subjects at TAFE for year 2 of my diploma. It was a few weeks before the proposed liver resection, with it’s 50% mortality rate, and at the time, i didn’t know what I intended to do with it…it was simply my nod to “normality”, or as close to it as I could get. Straight away I did a class presentation with a classmate, so we could get it out of the way before I went into hospital, and we were pleased to scrape in with a high distinction, as back in my old life, they were very important to me and something I always strived for. When the operation didn’t take place, I continued on with classes the next week, and have enjoyed every minute of the learning, the interaction, the just feeling studious….while studiously avoiding all the assessments that were due at the end of the semester!
I always intended to contribute to the group assessments and would never have let anyone down, but last week I had to hand in my first individual assignment, which required a bit of self motivation! I realised that mentally, I had always given myself an out….that I could just be doing it for the “experience”, that I didn’t actually have to do the individual assessments, that it didn’t “matter” if I passed, that I was only there to keep my brain from atrophying, and stop me sitting home and contemplating my impending doom. I looked at the assignment, which was quite dry and far from inspiring, and contemplated the doing of it. I couldn’t remember how to do anything, even firing up a report template eluded me initially, and the thought of referencing scrambled my chemo brain entirely. I wrote a few things out longhand, which I never do, the dog was barking, the housework was calling, the weather was shit, and i wanted to go back to bed with a book. It might sound crazy, but I knew that was the moment that was going to dictate the direction of my life now. Do I really want to put so much into studying for a diploma that goes beyond the expected timeline of my life? Surely I could be ticking things off that I want to make sure I do. Bucket list, or books? And then I called it. I threw all my papers into a bag, and found a usb stick, and got into the car and headed to the TAFE library, where i sat there like every other student, with papers and books spread out around me, and I remembered how to do everything and punched out that assignment and hit submit. Air punching moment…and it wasn’t even LATE! Then I fired off an email to the place I am proposing to do my second placement, and grabbed the timetable to see what classes I am taking next semester. I feel BLOODY FANTASTIC about it. It wouldn’t be for everyone, and I know there are folks who think I am batshit insane, but there is no right or wrong way to do this, and this works for me.
Now, this quite neatly leads into something I really want to address, and that is the power of positive thinking. I know that a lot of people with cancer read my blog now, and I get lots of comments, all of which I would like to answer and I am sorry if I can’t. A lot of them ask how I manage to stay so positive, and some lean towards berating themselves for not managing the same thing in their own battles with cancer, sometimes terminal like mine. A lovely lady contacted me the other day and wanted to know how I remain so cheerful in the face of this, when she doesn’t always manage it, but knows it is “so important”.
Now, this is very important to me. Just like every person with cancer is an individual, just like the beautiful and unique person they were BEFORE cancer…everyone’s way of coping with their own cancer / chronic illness is individual too. The LAST thing I would ever want a reader of this blog to do is measure themselves against me and find themselves wanting in some way. How do I stay positive all the time? Oh my goodness, I DON’T. And the thing is, I can understand those who berate themselves for not being able to constantly harness the power of positive thinking, as I remember when i did the same. It was during my first major terrified meltdown, when the palliative care nurse had to come and calm me and arrange some sedation to get me through the rest of the hellride that was that particular day. Instead of thinking it was normal, which of course it bloody IS when you are dying to be petrified and sad and broken and really, really fucking angry, I looked at her and implored her to tell me how to get back on track, as all this cortisol and adrenelin and stress hormones running through my body were “not good for me”, and I thought for all the world that they would take me out of this world quicker than I was actually going to go. The nurse kind of laughed, like she has heard this bullshit before, and assured me that to be positive all the time in my situation would be completely impossible, and that indeed, it was far from healthy not to have, and honour the fear and the rage.
She was totally right. Because here is the way I see it. Positive thinking, when it is possible to harness it DOES have power. It has the power to get me up to face each day, raise my children, do my studies, contribute to society….it helps me LIVE, but it sure as eggs isn’t going to KEEP ME ALIVE.
So, to my other friends with cancer, terminal cancer, chronic illness….all of you who are reading this that need to know. This shit is a white knuckle ride through hell, and sometimes it’s one hour, or even one fucking minute at a time. For me, just the same as for you. Some days, when I feel the darkness falling, I know there is nothing for it but to take a sedative and go to bed and howl and rock for hours on end. If that’s what you have to do, that is fine, you do it your way, and know that it’s ok. And then, when it passes, get up and put one foot in front of that other, and know that you are fucking brilliant to be able to do that. I’m proud of you. I’m proud of me. We’re doing this shit the best way we can, and I promise you I am not doing it any better than you are.
On a related note, I have never plugged anything on the blog before, but if you want to give a card to someone with cancer / chronic illness, consider giving them one of these empathy cards. They have been coming through my facebook feed non stop over the last couple of days, and they are absolutely BRILLIANT.
It’s normal not to know what to say to someone facing serious illness, or death. There are no platitudes that are going to make it any better. Just be there, and if you want to know what to say, considering letting these cards say it for you. I love every single one of them.
My family love to make me laugh, so when Gaz heard about these pug onesies yesterday while i was at TAFE, he took the children to Best and Less to get me one…..so you can have a giggle too, I give you me, in a pug suit, with my pug!
5 thoughts on “A penny for your positivity”
I love your writing so much! I had to laugh reading this, because I am massively procrastinating right now and DO NOT want to write the essay I am meant to be writing, and then of course you write about pulling your own finger out to write your own assignment, and I’m thinking, “If SHE can make herself finish her assignment…” For what it’s worth, I don’t think it is silly for you to continue studying at all, probably because I love studying so for me, that is part of what I love about my life and I get the feeling it is the same for you.
Anyway, just wanted to thank you for sharing with us and being so honest. x
Thank you for this Julia,
I think I’m right in thinking the woman your referring to here is me, I really don’t think it would be possible for you or anyone in our position to be positive all the time, but you do seem to be that way mostly, but anyhow I enjoy reading your posts, (probably not the right phrase give the subject matter but I’m sure you understand what I mean, your words strike with me as if id written them myself)
Although I find I get confused with which ones I’ve read or not cos they don t seem to b all listed at once in the same place unless I’m looking in the wrong area lol
Luv Debs xx
Yes you my lovely….I must look into getting my blog archives listed somewhere on the site, they don’t seem to be….I am not tech savvy and someone helped me set up the blog, I only know how to post in it lol. Hope you are ok, I am really down this evening, just waiting for it to pass xx
Once again a brilliant blog that I look forward so much to reading, a few months ago you gave me some advice on portal vien embolization unfortunately for me it was a non starter so I find my self in a similar position to you with liver Mets and not enough remnant for a resection I have been on folfori since July 2014 every fortnight. just had a recent scan and waiting on results but up to now oncologist says they are shrinking and we will just keep on with the chemotherapy. I think to compinsate for not having the resection they have said I may be a candidate for SIRT this has given me some sort of end game to work to but like other treatments there are conditions and restrictions which I won’t bore you with as I am starting to ramble a bit there always seems to be a BUT to knock you back down keep up the good work and I look forward to your next blog.
I so didn’t think I would finish reading this post by laughing out loud. You continue to inspire me and I’m still chuckling looking at that photo.