Wednesday, September 21, 2016

Chemotherapy, Round 1

It's been two weeks since I had my first dose of chemotherapy, and it feels like the worst of the side-effects have mostly worn off.

It was pretty awful... but not as bad as it could have been.  I'll tell you more about it after the second round.

What I'm really struggling with at the moment, is the feeling that I'm on some kind of weird home detention.  Because the chemotherapy wipes out my immune system, I am very, VERY susceptible to other people's bugs, and what is just a cold for a friend, can become pneumonia for me very fast.  Which sounds ridiculously dramatic... but it's true.  When explorers came across a tribe that hadn't seen outsiders before, it was very common for much of the tribe to die from illnesses that the explorers were carriers of.  The tribe's immune systems had never been exposed to these viruses/bacteria before, and they had no way of fighting them off.  That's pretty much my position.  All my built-up immunity has been wiped out by the chemotherapy, and it's starting again from scratch!  And it has to start again from scratch after each round of chemotherapy.  So I have to stay away from people, particularly groups of people, as much as I can 

All of which means, if you have a cold or a tickly throat, or someone in your family has bugs, PLEASE don't come and visit me!  Please don't have my kids round to play if your family aren't all healthy, because my immune system has enough challenges going on at the moment, particularly with 4 kids in the house.

Moving on from the physical to the mental...

The chemotherapy process seems to be one of letting go.  I've had to let go of going to school assemblies, watching my kids in various different activities, growing a big vege garden, going to church, being a part of the community garden... and yesterday I had to let go of my hair.  Even the way I think is different - it's called chemo-brain.  My thinking is fuzzier, sometimes it's hard to find the right words, and every now and then it's like my brain fills up with fog, and I can't make decisions about anything, or even think coherently.

It's hard.  And scary.

I know that it's all temporary... but it's my reality right now, and will be for the next few months.

It feels like I'm in some weird kind of personal autumn.  I'm like a tree, watching so many of the things I love doing and so much of my physical being that I took for granted, just fall away, like leaves onto the ground.  And there's nothing I can do about it!  I can't hold on to these things tighter, I HAVE to let them go.  I have to surrender to this process, and let so much of what has brought meaning to my life, slip out of my hands. 

What makes it stranger, is feeling like this while it's spring outside.  Seeing new lambs, trees budding, bulbs flowering, everyone getting excited about what they're going to grow this season, the weather starting to warm up... while in my life, everything is slowing down and paring back to what seems like a long way short of the bare essentials.  I feel completely out of tune with life around me.

It often feels like I'm in that little patch of shadow, watching everyone else in the sun.

Sunday, September 4, 2016

Both And.

After almost a week of agonising, and trying to get second opinions (which proved to be impossible), I finally made the decision - I'm going to do chemo.

I immediately felt much better - I looked out the window and thought 'Oh wow, the sun's out and it's a beautiful day!'  I actually hadn't noticed until then.

So, I've made the decision, and I'm getting my first dose on Wednesday, 7 September.  I'm going to be having four lots of chemotherapy, about three weeks apart, if all goes well.  Nobody can tell me how I'll be afterwards - whether I'll be one of the lucky ones who sails through chemotherapy, only feeling a bit seedy for a few days; or whether I'll be one of the ones who is completely wiped out the whole time.  I'm obviously hoping for the first option!

So I've been trying to figure out how to keep all the plates of our family spinning, while having no idea how much help I'm going to need.  Which makes it a little tricky... there have been a few phone calls where I'm asking people if they can do such and such, if I need it.  And so far everyone has been very obliging!

One thing I do want to talk about is my positive attitude.

I do have a positive attitude, in that I'm doing my best to deal with whatever is thrown at me, the best that I can.  I'm doing #100happydays on Facebook, where I'm talking each day about the little or big things that make me happy.  And people seem to like that.

But the 'brave cancer fighter' label is a tricky one.  Because yes, I'm brave.  And yes, I'm fighting this.  And yes, I have a positive attitude.

But I am more stressed than I've been in years.  I cry a lot.  I'm still taking painkillers from my surgery 4.5weeks ago.  Little things like trying to decide what to wear, take a lot of emotional energy.  I often want to hide - to just be by myself - because my heart hurts about the way our lives have all changed.  We're having dinner conversations about the side effects of chemotherapy, and what I'll look like with no hair, and while that's good, and I'm glad we can talk about it with the kids, I HATE that my kids are having to think about this stuff, connected with their mum.  My head often feels like it's spinning, and I've learnt that deep breathing helps when my stomach hurts from stress.

This is what brave looks like too.

This is the other side of the 'positive attitude'.

If I was only ever upbeat and happy, that wouldn't be healthy.  And sometimes I worry that because I'm publicly focused on the positive, the other side of this might be forgotten.

The other side is, that this is one of the scariest times of my life; that it's so hard that my husband and I congratulate each other, every night, on making it through another day; that despite our reassurances, my kids are worried that I'm going to die; and that I really, really wish my biggest concern was that my seedlings were getting knocked over (like last year).

That's why this is titled 'Both And', rather than 'Either Or'.  Because life isn't one or the other, it's both at the same time.  That's what this is about - focusing on the positive, while still feeling scared.  Noticing the lovely, while wiping away tears.  Taking deep breaths to be calm for the kids, while knowing that the reason they're fighting so much is because they're scared too.

I see focusing on the positive as my act of defiance.  Regardless of the bad and scary and evil that is going on in the world, in my life and even in my own body, I WILL still see the good and beautiful and lovely in the world, and my life... and even my own body.

Both and. I acknowledge the dark is there, but I choose to focus on the light.