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.

Finding the lump

“Feel this,” I said, taking The Boy’s hand and putting it on my right breast.

He didn’t even have time to finish his smile before it turned into a frown and I knew I wasn’t imagining it.

It was hard, round, pea-sized and definitely there.

We were lying on the floor, watching TV and my right arm was stretched above my head. Over the next few weeks and countless doctors appointments later, I learnt that it’s the ideal position to examine breasts, the action stretches out the tissue so that it flattens out and gives you more surface area to prod.

I don’t know why my arm was in that position that night.

I don’t make a habit of examining my breasts, usually around October when everything turns pink and I’m reminded that I probably should pay lip service to it.

I’m 32, healthy and have no family history.

Over the next few weeks, I put off having a mammogram but I would constantly check my breast. I couldn’t feel the lump when I stood up, but when I lay down and stretched my arm it was there.

Until one day it wasn’t. I couldn’t feel it anymore.

Score. I can just pretend that it never happened.

Then I got a letter reminding me I was overdue for a pap smear, another of those delightful tests that I wanted to put off but this time I dutifully trotted off to the GP. The Boy and I were trying to fall pregnant and after a few months of nothing I wanted to make sure everything was in working order.

I casually mentioned the now-missing lump to my GP and she referred me for an ultrasound. It was probably nothing but it wouldn’t hurt to check.

Mammograms aren’t ideal for women under 40, breast tissue is too dense and it’s hard to detect abnormalities, so we started out with an ultrasound. Lying there and chatting away to the technician while he did his thing, he said it was probably a cyst. They form, then they go away. Nobody knows why, but it’s nothing to worry about.

He kept the ultrasound probe in the one spot and asked if I felt anything. Nope, nada.

There was a lump there, but before I completed my freak out he calmed me down. It was benign. Phew.

My referral was just for the right breast, but seeing as I was already lying bare-chested on the table and he had found something in one, I asked him to check the other one.

We were happily chatting away when he focussed on a spot about two centimetres above my left nipple.

“Does this hurt?” he asked.

“Nope.”

“Any tenderness?”

“Nope.”

“Any nipple discharge?”

“Nope,” I said, still oblivious.

“I can see another lump.”

“Just like the other one?” I asked, unperturbed. Writing this down now, I can’t believe I was so thick.

There was a three second pause before he said, “This one is different.”

And that’s when I got it.

It was the way he said “different.” I just knew.

I had to wait a week for the results of the mammogram and biopsies to come in. People say the worst is the waiting, the not-knowing. They’re wrong. At least while waiting you can kid yourself that there’s nothing wrong.

Although I felt the cyst, I couldn’t feel those two lumps. I would lie down, examining my breasts and not feel a thing. But they were there. Even my brilliant surgeon needed a few seconds of prodding before he found the cancerous one, and that’s with experience and a mammogram which showed him exactly where it was. I would have had no chance of finding it on my own.

If I hadn’t felt that cyst, I wouldn’t have mentioned it to my GP.

If I hadn’t had the pap smear reminder, I wouldn’t have seen my GP.

If I hadn’t had the benign lump in my right breast, I wouldn’t have asked to get my left checked.

Sometimes I wish I hadn’t done any of those things, then I wouldn’t be on the uncontrollable roller coaster ride that my life has become. I know it’s cowardly and my rational self calls bullshit on my emotional side because the thought that it could still be in there, dividing, multiplying and growing, fills me with revulsion.

An upside to chemo

Showering bald. Seriously.

Who knew that a simple shower could give you so much pleasure?

When you don’t have any hair blocking the way, all those wonderful, warm jets of water gently stimulate your scalp and it feels amazing.

It’s a revelation.

It feels like a soft, light head massage from an army of nimble-fingered fairies. Not as strong as what you get at the hairdresser or as intense as the Orgasmatron metal head massagers that were huge a few years ago, rather these light little flicks that dance across your scalp with just enough oomph to make them rejuvenating rather than ticklish.

It’s not just me. Charlize Theron was all about bald showers when she was filming Mad Max.  “It was really fun to shower with my bald head. You have not showered until you’ve showered hairless,” she said.

And I found this on You Tube

 

 

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.