Chemo is kicking my ass this week

I suppose I should be grateful that it took four sessions for chemo’s full-force to hit.

All those pointless positivity cards would tell me to look on the bright side, that at least I made it through halfway relatively unscathed.

But it is hard to find any gratitude when you’re in so much pain.

For the first three chemo cycles I was on FEC and I dealt with it better than I could have hoped. The steroids and copious amounts of ginger tea, did I mention I don’t like ginger?, kept nausea to a minimum, regular cat naps meant I could stay awake most of the day and I knew that I had to crawl to a snail’s pace when walking up hills if I stood any chance of making it to the top.

So far, so bearable.

Before starting chemo I had a few people tell me it wouldn’t be as bad as I was expecting it to be. Of course, they had to be lying. A little white lie to allay some of the terror of what was ahead.

But then waddayaknow, it turns out it was bearable. Not pleasant, but bearable. There was no throwing up in a bucket, collapsing at the supermarket or weeping mouth ulcers. I would cross my fingers when someone asked me how I was doing and reply, “surprisingly ok.” Just in case I ran out of luck.

I felt guilty, like I had cheated chemo. If all these side effects hit others so hard, then how did I escape them?

Then on Friday I switched to Docetaxel and my luck ran out.

I knew about the potential bone and joint pain, but the side effect I was most scared of was losing my nails. Right now though, I would gladly give up all my nailbeds to get my body back.

I feel like an old woman.

On Monday I could barely make it from the bed to the couch, on Tuesday I physically couldn’t get out of bed.

It felt as if my limbs were leaden and I was attempting to drag them through thick, gloopy honey. I knew what I had to do to make them move, but going through with it was just too hard. The trek from the couch to the bed was so arduous I slept for an hour to get over it.

My biggest achievement yesterday was summoning the strength to shower at 3pm. Even then, I had to sit down halfway through.

I was so sore, so heavy that I was genuinely surprised to look down and see that my skin was still smooth and white. I expected to discover big, blotchy bruises all over. How could my insides be screaming at me while my outsides were just fine?

Today I’ve managed to stand in the shower and I’ve even left the house, my legs wobbling down the stairs as if this was a new activity they were doing it for the first time.

And I have The Boy to thank for that. My painkillers weren’t touching the sides, so he suggested I call the chemo nurse, who faxed a prescription for Endone to my pharmacist.

Genius. If only I had thought about that yesterday. Guess I can add chemo brain to my new list of side effects.


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Being bald is not too bad

One of my biggest fears going into chemo was losing my hair.

I’ve written about it before, so not going to go into too much detail, but now that it’s happened I can see why I was so scared, it’s the big signifier that you’re sick.

Nobody bats an eyelid at a bald guy, but a bald girl? You get a lot of looks, all fleeting but you can see them go through the various stages of curiosity, pity and then embarrassment when you catch them staring.

I can’t blame them, I’d probably do the same. Humans are curious creatures and our first instinct when we see something out of the norm is to have a squizz.

I thought I would be very self conscious about it and for the first few days I was. I had a wig plus faux fringe, which is like a headband, to wear under hats and scarves. The ends peek out so it’s more of a look rather than the more obvious cancer scarf.

But then we had that first hot weekend a few weeks ago and I couldn’t bear the thought of a wig, so I whipped it off at my in-laws’ place. Up until then, only The Boy and my hairdresser had seen me in all my bald glory. It was a huge relief, the new wig felt suffocating and I could only wear it an hour at a time then, so once I got rid of it my sweaty scalp picked up the breeze and cooled me down. Although I did have to be reminded to apply sunscreen, it’s virgin skin up there and ripe for burning. The last thing I need right now is to encourage melanoma.

A colleague asked for a post-shave pic and even though I wasn’t comfortable going public at that point, I happily sent her a text. It was a little patchy then, as not all the hair had fallen out, and her comment that I looked like a hot, butch lesbian made me laugh.

It helps that even though I’m halfway through I still have my brows and lashes *knock on wood, I have nine weeks to go*. My thick, dark, unruly wog brows which were once the bane of my existence have thinned but they’re still there, stubbornly hanging on and for that I’m grateful because I realised that’s what’s helping me. It’s not the baldness that makes you look sick, it’s the lack of brow.

Then the weather turned, winter made a comeback and I reverted back to beanies.

As it slowly got warmer, this week not withstanding, I’d get hot on our morning walks and would take off my beanie. Yes people look, but I don’t give a shit anymore.

My friends and family have seen me bald, they’ve even given it a rub for good luck but that’s been about it.

And then today I posted a bald selfie. It’s #brightpinklipstick day, an initiative from Pink Hope to encourage women to talk about hereditary breast and ovarian cancer. Seeing as I have a faulty BRCA2 gene, it’s something that I want to get behind.

IMG_6204

A bit of make-up, natural light and the right Instagram filter bolstered my confidence and I have had a lot of lovely messages from friends and strangers on social media. I guess no one wants to be a dick to a cancer patient, unless they’re hiding under a pseudonym.

Another reason was that when I was diagnosed and frantically Googling cancer blogs for first-person experiences, I found ‘Hair is Overrated’ by Vicki Connerty on Debrief Daily and it really helped me.

http://www.debriefdaily.com/health/diagnosed-with-cancer/

So, for anyone out there that’s terrified of starting chemo and losing your locks, and you will be, take comfort in the fact that it’s ok. It means the drugs are working.

#letstalkaboutbreasts

A few weeks after my first chemo session, I got a call asking if I wanted to take part in a breast cancer awareness video.

Being a journalist, I’m normally the person on the other side of the phone looking for case studies to be in my stories, so I figured it was good karma to say yes.

It also helped that I still had a bit of hair left, so I was OK with being filmed. If you look closely you’ll see that the hair on my sides has gone, so it looks like I have a pink undercut. Totally badass.

Ignore the weird head tilt thing that’s happening, as a print journo I’m allowed to be wonky on camera, and focus on the message. Get checked. One in 8 women will be diagnosed with breast cancer, what’s so special about you that you think you won’t be one of them?

 

Why is it my responsibility to make others feel OK about my cancer?

One of the oddest things about having cancer is becoming your own cheerleader.

I expected that the people around me would provide support, and most have, but I find that I’m also providing emotional support to those who are not OK with me not being OK.

And so, as the strong one, as the one who’s always coped, as the one who doesn’t wallow, I’ve stepped up to the plate and placated their fears.

“It’s ok, it’s just a small tumor.”
“It’s fine, at least it was just a lumpectomy.”
“Well it only spread to four lymph nodes, it could have been worse.”

I’ve never been good at asking for help and have prided myself on sorting out my own shit, but I’ve discovered that can push you into a corner.

When you have a reputation for being self-sufficient, people take it for granted that you’ll bounce back.

But like a tennis ball that’s been slammed a few too many times, my bounce is starting to fade.

Chemo isn’t a breeze, but neither has it been as bad as I expected. I’ve lost my hair, but I’ve kept my brows so far, which makes a big difference, and people keep telling me I look well. When I’ve got my wig on and apply a bit of make up I could pass for normal.

But because I look OK, the assumption is that all is well and for those that aren’t handling my illness, it’s an easy out.

Instead of stepping up, it’s easier to not acknowledge that there are days I want to be looked after, cared for and made to feel I’m a priority in the lives of those I love and who are supposed to love me.

I was chatting about this with my breast care nurse who said it’s common that the patient ends up supporting the people around them. I took that on at the start, because I could see that there were those who weren’t dealing with my illness and it made me feel guilty that they had to take on this as well.

But I’m tired now, I’m halfway through chemo and don’t have the energy to be relentlessly positive for other people’s benefit.

When someone asks me how I am, I don’t want to have to filter my response depending on who I’m talking to.

I don’t want my bad mood dismissed as just the result of my epic cocktail of drugs. Yes, chemo makes me irritable, but you are also giving me the shits.

But as sad as it makes me, I’ve realised is that what I need and what some people are capable of giving don’t always match up.