There’s no right way to do cancer

I had a blog comment that made me think.

One of the reasons I’m blogging about this is to process my feelings. For me, writing is a way to work through them all and surprisingly, I find myself typing something I’ve never consciously thought of but when I read it back I get a jolt of recognition that yes, that’s exactly what I’m feeling.

Another upshot of sharing is that people respond to my posts and comments. It helps to hear from people who have gone through or are currently going through this because they get it and I value their insights.

I received a comment on a post that pointed out my bitterness and I had to stop and think about that post and the following response to it. At the time of writing it, I wasn’t feeling bitter, just sad. It was 16 days after my first chemo session and my hair was falling out. It was a short post, written in real time about what’s happening to me and my distress and fascination with how my body is responding.

Although I knew it was going to happen, it was still painful to experience and looking back, I’m ok with that. No one can tell you how you will respond when it happens to you. There is no right way to do cancer. We feel what we feel and we are allowed to feel it.

I think we need to feel it, otherwise it just bottles up until we explode.

I’d cried a few times after my diagnosis, but one day I lost it. In public.

It was early on, there was alcohol involved and it was the first time I completely left myself go. As all the fear, misery and yes, bitterness, burst out of me, my cry turned into a wail, the kind of gut-wrenching howls and heaving sobs that cause your body to convulse.

I wailed into my friends arm while The Boy rubbed my back, both of them trying to calm me down but I couldn’t stop. It’s true what they say about the floodgates opening, shutting them down is impossible, you need to let grief run its course.

Luckily, I’d had the foresight to meet in a pub, so it was dark, loud and we were sitting up the back so I don’t think too many people noticed.

But after that I felt a lot better and we all went out for burritos.

As for the bitterness, I admit I’ve had the “why me?” moments, I try not to dwell on them but at the same time I’m allowing myself to feel what I feel and grieve the loss of my old life.

But then I think, “why not me?”, one in eight women get breast cancer, I just happened to be that one.

Like the commentator said, there’s no playbook for cancer, we’re all muddling our way through it the best way we can.

 

Day 16

Sixteen days after your first chemo session is when your hair starts to go.

It’s very specific and turns out it’s bang on.

I was styling my hair this morning and when I went to wash my hands, they were covered in hair. Not a huge wad, but enough strands that when I rubbed my palms together they created a nice little hairball that I threw in the bin.

My palms were sticky from the hair product and the friction of rubbing them through my hair  had turned them into the hair equivalent of a mosquito strip. They stuck and they stuck fast.

When I was a kid and had a loose tooth, I would play with it, poking and wiggling it even though I knew I shouldn’t. It was too much of a temptation not to touch it.

I’m doing the same thing with my hair. I run my hands through it and each time a little bit more comes out.

I’m not too sure why, it’s a macabre fascination.

Maybe I want it to go, at least that way it’s done.

The chemo crop

“I need you to cut it all off,” I told my hairdresser.
For a second, he grinned like a child being told they can have all the toys in the store, rather than just the one. Hairdressers relish clients who want a dramatic change instead of the usual trim.

But his smile didn’t last long.

Like all great hairdressers, he’s perceptive and picked up that I said need rather than want and that I wasn’t smiling when I said it.

His hands on my shoulders, with both of us looking into the mirror, I told him why it had to go.

One of the hardest things about chemo is losing your hair.

For most women, it’s such an important part of our identity, that knowing it’s going to be taken from you without your permission is devastating.

I’ve always been a long-hair girl, aside from a short bob while living in London in my early 20’s I’ve worn it in long layers which trailed down my back.
I’ve left it out, put it up, braided it, curled it, bleached it, straightened it and coloured it.

It’s an accessory I’ve taken for granted, assuming it would always be there.

Last year I graduated to the lob, a long bob, which swished just above my shoulders but still long enough that I could play with it.

The first chop was just after the surgery. My breast care nurse was surprised that I was doing it so soon, a month out from my first chemo session, but I was adamant that it had to go.
It was about attempting to wrestle back some semblance of control over a situation where I am completely powerless.

The first chop
The first chop

So much about chemo is unknown. I don’t know how I’ll react to the medications, what my side effects will be or how well I’ll recover.

What I do know is that I’ll lose my hair, as much as I don’t want to, so the least I can do is decide when it goes.

I’m grateful my hairdresser took control of the situation. Rather than go all out with a pixie, we went shorter back and sides with long layers on top which I could still curl, style and play with.

It gave me a chance to get used to it my new reflection while still recognising it. I even grew to like having short hair, it took a bit of styling after the first wash, then I didn’t have to do anything to it, apart from some dry shampoo and finger combing, for the next few days.

Playing with it while I still can. I quite like the pink.
Playing with it while I still can. I quite like the pink.

Hair usually falls out 16 days after the first round of chemo. My first strands came out seven days later. And that was the moment it hit me, shit’s about to get real.

As strange as it sounds, I’d forgotten about the pain of the surgery and the devastation at being diagnosed. It had happened and I’d recovered. I also had minimal side effects after chemo, which lulled me into a false sense of security and helped me hang onto the delusion that I might be spared this.
Even though I knew it was going to happen, I freaked out when it did.

So I booked in for my second chemo crop the next day.

The second chop
The second chop

I was, and still am, terrified of washing my hair and finding clumps come away from my scalp. At least this way, there’s less hair to lose.

I still don’t know how I’m going to feel when it happens. I’ve got five days until it does.

What not to say to someone who has cancer

Every time someone tells me I’m lucky to have breast cancer, a little part of me wants to punch them in the face.

“You’re lucky, it’s such a well-researched cancer.”
“You’re lucky, hardly anyone dies from breast cancer these days.”
“You’re lucky, breasts aren’t essential, you can just chop them off.”

I know all of these things are true, and yet, every time I hear the L-word I want to rage at the world.

Yes, it is a well researched cancer and yes, the fatalities aren’t what they used to be but not everyone makes it through.
And while it’s easy enough to be blase about someone else’s mastectomy, you don’t realise how attached you are to non-essential body parts until someone casually brings up the possibility of removing them.

It’s hard breaking the news to people and I understand that their first instinct is to look for the positives. It sure beats being told a tale of woe about such-and-such who didn’t make it through breast cancer. And I’m not even joking about that, it’s happened a few times.

Although BC, before cancer, I was a glass-half-full type, right now I don’t want relentless positivity. I also don’t want to be looked on with pity or told that it is all part of God’s great plan. God and I are not friends right now.

The week after being diagnosed was a blur. I wanted people to ignore it, I wanted people to recognise it, I didn’t know what I wanted except to stop being told how lucky I was.

And if I couldn’t identify what I needed from others, what right did I have to be angry at their responses?

It turns out that what I needed was a recognition that this is shit. I only realised that when a friend railed at the world on my behalf and said, “I’m sorry you have to go through this.”

Because she was right, there is nothing good about it and there is no silver lining, it is something that I have to go through even though I desperately don’t want to.

The only other thing that makes me angrier than the word lucky, is journey.

This is not a journey.

It’s a long, sweaty, arduous, uphill trek that I would never sign up for. After all, I’m the girl who took the train up to Machu Picchu rather than do the four day hike.

And I had a choice in that. With this, it’s not as if I’ve picked up a brochure and decided that six months of chemo would be a good idea, now would I like to administer it via a pill or IV? And then choose between the drugs that make your hair fall out or the ones that cause your nails to fall off? Let’s throw in a case of early menopause too, just because it will round out the journey nicely.

But when I’m done feeling sorry for myself, I know that what everyone says is true. I’m lucky. They found it early, removed it and I got to keep my breasts.

No such luck with the hair though, I had my first chemo session last Friday and it’s falling out as I type.

Guess I’ll be lucky if my nails don’t follow suit.