Caring for your body during chemo

Before you start chemo, they present you with a very long list of potential side effects. Most of them contradictory. As well as losing your hair, you could get diarrhea, become constipated, get dry eyes, develop watery eyes, break out, get dry skin, have hot flushes, lose your nails, develop mouth ulcers, swollen fingers and toes and lots more.

I wrote a story about how to care for your body during chemo, covering skincare, nails, hair and oral health for The Daily Telegraph. But I was restricted by a word count, so here’s a – very long – post that combines the story plus  are a few other things that have helped or are currently helping me.

Feel free to comment on what works for you.

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Hands and nails

Sally Hansen nail expert, Alison Bowhill-Hayes says side effects can include lines or ridges, brittleness, discoloration, frayed cuticles and even nail loss. Skin openings in frayed cuticles are also prone to infection.

“Keep nails short and don’t use scissors or clippers, just a disposable emery board or file,” Alison says.

“Wear gloves when doing chores and invest in really good hand creams and cuticle oils, moisturizers are the best protection. Avoid professional manicures, pedicures and definitely no acrylic nails.”

If they fall off, nails usually starts to grow back a few weeks after the final chemotherapy session and take about six months to reach full length.

While you can’t prevent nail loss, Alison recommends wearing black nail polish.

“It is great at protecting the nail from UV light, reducing the risk of infection. Also as nails can become discolored you may feel more comfortable covering them up,” she says.

I’ve just had my second round of docetaxel and the side effects ramp up with each session, my fingers are swelling, my hands are a lot more sensitive, my fingertips have started to crack and my dry skin is peeling. I keep hand cream in every room of the house, plus various handbags, so I apply whenever I remember.

I also apply cuticle oil several times a day to prevent them from splitting.

I’m using dark nail polish as well, to protect them from UV light.

During docetaxel, they give you ice gloves to wear. This helps numb the nerve endings in your fingers and help save your nails. I found it’s a lot easier if you keep one hand in for two minutes and then swap. Much easier than chilling both at once.

Feet

I’m getting the same swelling and sensitivity as my hands, so using moisturiser with peppermint to help cool them.

Avoid long walks on hot days, I took Scoo for a two hour walk on a 30C day and couldn’t walk the next day. Once the swelling went down, I counted 11 blisters.

Skin

Dr. Spiller skincare expert, Sue Dann, says chemotherapy can result in a range of skin issues, including dehydration, discoloration, bruising, infection, itchiness, dryness, peeling and acne.

Skincare should extend to the whole body, including the scalp.

“It is important to switch to a good moisturizing body cream, one preferably with shea butter, because it sits on the skin and acts as a protective shield. In case of extreme dryness a body oil is beneficial,” she says.

Complexion

Registered nurse and co-founder of skincare specialists, The Clinic, Kaye Scott recommends preparing the skin before chemotherapy with lots of hydration and antioxidants.

Swap your regular moisturiser for a paraben and preservative free formula that contains calming ingredients such as sea buckthorn, chamomile, Vitamin E and aloe vera such as Cosmedix Rescue+ and Aspect Dr Redless oil.

“Avoid harsh products and active ingredients such as Vitamin A as skin is compromised, with a high tendency towards dryness and irritation,” she says.

To add insult to injury, corticosteroid drugs such as dexamethasone which are prescribed to combat nausea, can cause breakouts.

“You must be very careful to avoid alpha hydroxy acids and salicylic acid which are found in acne treatments as the skin is fragile. If you experience a large amount of breakouts, speak with your oncologist,” Kaye says.

My once oily skin is now dry, irritated and tight so I’ve had to switch my skincare regime.

I use a thick, creamy cleanser in the mornings, layer anti-redness and hydrating serums and a thick layer of skin balm rather than regular moisturiser.

Sunscreen is also important, your skin is more likely to burn during chemo.

At night, I use a cleansing oil to get rid of sunscreen and make-up. It’s thick, soothing and doesn’t strip my skin.

Then I started breaking out, lots of little red pimples that wouldn’t come to a head so it looked like a red rash across my cheeks and forehead.I thought it was because I was over-moisturising, but it was the steroids. Not much you can do about it. My skin was too sensitive to exfoliate or use acne treatments, so I just had to roll with it.

Make-up

My complexion has two settings at the moment, red or yellow.

Redness is best covered with a mineral powder foundation that you buff into the skin. I haven’t found anything else that works as well. You could do a two-step system where you use a green colour corrector under foundation, but that’s a lot more work.

For powder foundations, be careful that your skin isn’t dry or flaky as it gets stuck in broken skin. Not a good look.

I’ve lost my olive skin, it’s been replaced but a somewhat jaundiced yellow hue so I have been using highlighters and luminizers to bring my skin back to life. It needs glow.

When it comes to make-up, keep your layering consistent for the best finish. If you are using a liquid base, go a liquid or cream blush, bronzer and illuminizer so you’re applying like on like.

I like Revlon Skinlights, it’s cheap, comes in a few shades and is easy to blend on its own or just mix into your moisturiser for an all over glow.

Powderwise, I Bobbi Brown’s Shimmer Bricks and I’ve heard good things about Hourglass Ambient Lighting Powder, but haven’t tried it.

Mouth

Special needs dentist, Dr Sharon Liberali from the Australian Dental Association says the tissues of the mouth and saliva can be affected.

“With less saliva, your mouth may feel dry and uncomfortable, making it difficult to eat dry, spicy or acidic foods” she says.

“Some chemotherapy drugs affect white blood cells which fight infection, increasing the risk of bacterial and fungal infections and ulcers.”

Sharon recommends a mouthwash that contains chlorhexidine, such as Curasept, which is alcohol free and is antiseptic, antibacterial and antifungal. Difflam oral rinse contains benzydamine which helps with inflammation and pain, while Biotene is alcohol free and help dry mouths. Salt water and baking soda rinses are also great.

“Salt is a natural antiseptic while bicarbonate is alkaline and effervescent. Dry mouths are often acidic so neutralising the mouth’s acidity will decrease the risk of bacterial overgrowth and thrush organisms. Flat soda water is also effervescent and the bubbles give comfort while removing food stuck on teeth,” she says.

I’m thankful that so far I haven’t lost my sense of taste. I love eating and the idea that I could lose that pleasure was just too much.

But I’m not out of the woods.

I survived FEC ok but my mouth is super-sensitive the week after docetaxel.

I can’t drink coffee, it just dehydrates my mouth.

All alcohol tastes metallic, so drinking is out.

Acids and chilli also irritate.

For the first week I’m all about soft bread, pasta and creamy butter, foods that soothe and calm my mouth. Chocolate is also good, it’s all about a rich, creamy, fatty coating on my tongue and the roof of my mouth.

I saw a dentist before I started chemo who put me on a strict oral hygiene regime, which included a sensitive electric toothbrush, fluoride toothpaste, tooth mousse and piksters rather than floss.

I rinse my mouth with warm water and salt or bi-carb after each meal, or if I’m out I have a small bottle of Biotene, a moisturising mouth wash.

Moisturising mouth strips also help.

I couldn’t find Curasept in a local pharmacy, so have ordered it online. The key ingredient, chlorhexidine, can stain your teeth and although you can find it in other brands, Curasept contains an anti-staining agent.

I read about oil pulling, an ancient ayurvedic treatment where you swish coconut oil around your mouth for 20 minutes first thing in the morning to remove toxic build-up. I ran it by my dentist who said it couldn’t hurt. Rather than ridding your body of toxins it’s moisturising your mouth first thing in the morning, when it’s driest, which helps protects your mouth, teeth and gums. It’s not the most pleasant experience at first, but you slowly get used to it .

Hair

Losing your hair is one of the most traumatic parts of chemotherapy and getting a wig can bring some normality to your look. A lot of hospitals have wig libraries, where you can borrow a style for the duration of your treatment but options are limited.

Wigs are made from synthetic strands or human hair. The former are cheaper, but you can’t style them with hot tools and while the latter look a lot more natural, they can cost in the thousands.

Whatever type you choose, stylist Anthony Nader recommends going lighter than your natural shade and, to make it look as real as possible, getting it cut to suit you.

“Your complexion fades during chemo, so you need to adapt your hair colour,” he says.

“Wigs are hard to manicure, so find someone who has experience working with them. The key is combining jagged, textured edges, blending every line and tailoring it to make it look natural.”

I was fixated on the idea of a wig before starting chemo, it was my security blanket, but I found I haven’t worn it as much as I expected.

In an Australian summer it’s just too hot. Plus, as you get used to being bald, it becomes less of a thing.

I prefer a faux fringe + headscarf combo.

Saying that, I’m glad I had it for the first few weeks and that my hairdresser cut it to fit so that it helped me feel more like me.

Body

On the first 30C+ weekend in Sydney I broke out with red welts all over my legs and thought I had been bitten by something at the beach. Then I saw the same welts on my waist and inner arms.

Turns out it was heat rash, something I didn’t think about because I’d never had it before.

Your core body temperature rises, so keep cool in natural, breathable fibres such as cotton and linen. Polyester is not your friend.

And swap your regular body moisturiser for a body oil. Your skin will just soak it all up.

Brows and lashes

Just because your lose your hair doesn’t mean you’ll lose all your brows.

If they’ve thinned, Amy Jean Eye Couture’s founder and brow expert Amy Jean Linnehan recommends drawing them in with a brow powder, which gives the brows volume. If there’s no hair, an extremely sharp pencil applied in feathery strokes gives definition.

“There are stencils on the market that you can simply hold over the skin and colour in the shape,” she says.

Lashes can also thin and fall out.

“There are newer false lash strips available with an invisible line to adhere to the skin, so you don’t need lash hairs. They are lightweight and can be reapplied by peeling off the old glue,” she says.

“I’ve seen some incredible results with lash growth serums and many post chemo clients regrow their brows between 50-75 per cent of their natural capacity. For sparse brows, we can etch micro hair strokes into the skin using our feather touch tattoo technique and results last up to two years.”

Losing my lashes and brows has been one of the hardest parts of chemo because my face used to be 90 per cent brow. That’s what you get from being Italian.

Now, I look into the mirror and don’t recognise myself.

They stuck around during FEC but docetaxel is taking them away. Yet my hair is growing back. Go figure.

At the moment, there’s not much I can do apart from drawing them in. I’m avoiding mascara, I find I lose too many lashes when I remove it, but smudgy eyeliner helps disguise the lack of hairs.

You’ll also need to keep tissues handy, a lack of lashes means watery eyes. Who knew they actually had an evolutionary purpose?

Tissues are also good for runny noses. A lovely side effect of losing nose hairs.

I’ve had two personal recommendations for lash serums, Revitalash and Priori Lash Recovery serum. I’ll give one a go, and cross my fingers, three weeks after my last chemo session.

Extra stuff

  • I started chemo in July and didn’t realise how much warmth your hair holds until I didn’t have any. My head was cold and the cashmere beanies from www.essentialluxuriesforcancer.com were a godsend. Super soft, they had no seams so didn’t irritate my scalp and kept my head warm. I bought two, a double layer for daytime and a single layered beanie to sleep in.
  • The selection of wireless bras here was also great. I had my lymph nodes removed, which  ups my risk of lymphoedema and meant that post-surgery I had to throw out all my underwire bras. Finding pretty, supportive lingerie without underwire in anything bigger than a C cup isn’t easy but these fit the bill.
  • This was part of my post-surgery kit. It’s not the most attractive bra, but it ticked all the boxes for post surgery; no underwire, cotton, strong compression so that your breasts don’t move and irritate scars, thick straps, supportive plus front and back clasps so it was easy to get on and off. The compression is so good, we’re talking no bounce, that I still use it as a sports bra. http://www.berlei.com.au/post-surgery-bra-y130w-l59.html?gclid=CJLUsoGj0sgCFQGZvAodPpgDRA&gclsrc=aw.ds
  • These stretch lace, soft cup bras aren’t the most supportive but they made me feel pretty and feminine after having my chest hacked. http://www.palindromestudio.com.au/bras/soft-cup

Cancer steers your whole life off course

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A wedding at Arthur McElhone Reserve, image via http://www.ballyhoophotography.com via Google Images

I was supposed to get married this weekend.

Instead, I’m having my fifth round of chemo.

It’s the second dose of docetaxel and because I know how bad it will be, I’ll be apprehensively waiting for the pain to kick in.

Instead of the last minute frenzy of making sure the flowers will be delivered, I have something blue and stressing over whether it will rain – to add insult to injury, it will be a perfect, clear 28C Sydney spring day on Saturday – I’m making sure that all my drugs are well stocked and ready to go; endone, ibuprofen, paracetamol plus epsom salts for long baths.

I was never big on getting married. While other girls fantasised about the big white dress, I dreamed about travelling and independence. I wanted to get out and see things, collect experiences, do stuff and I always thought a husband would get in the way.

In the fairytale version of girl-meets-boy, my relationship would have made me see the folly of my ways, but for the first few years of my relationship my view didn’t change. This was never going to last, he wasn’t my type, he was just going to be a chapter in my life.

There was never a lightning bolt moment, just the slow realisation that I loved him and I wanted to be with him. He also wanted to see things, collect experiences and do stuff, so why wouldn’t do it together?

A few months in, before those three little words were exchanged, a girlfriend asked me why we were still together.

“He grew on me,” I said.

“Like a fungus?”

Yeah, slowly and stealthily until I realised that I didn’t want a life that didn’t include him.

Fungus isn’t the most romantic way to describe your partner, but I’m not talking about your run of the mill button mushroom. He’s a truffle; rare, hard to find, what everyone is searching for; kind, supportive, good cook, great cuddler and smells fabulous – even without cologne, but add Spice Bomb into the mix and it’s a whole other level.

We’ve been together for eight years and although we talked about the big, life building stuff like kids and buying property, neither of us was too fussed about marriage.

But then our friends started getting hitched and watching the brides dance with their fathers shifted things for me. My dad has metastatic cancer, there’s no cure, it’s a matter of months or years rather than decades and the sheer force of his mortality hit me.

I want to have the father daughter dance, I want him to walk me down the aisle because I know that it’s important to him and I want to have that memory of us.

I gave the celebrant clear instructions that under no circumstances was she to mention the words “give away.” I am not an item to be shifted from one man to another, I moved out of home at 21 so I would have been appalled if The Boy wanted to ask my father for permission or wanted to have the traditional phrasing. Hell, I wasn’t even planning on taking his surname.

There was no big proposal, rather a series of conversations where we decided that this is what we wanted to do.

The plan was a casual reception in one of our favourite parks, maybe with a Dr Seuss reading, and a party rather than a formal reception. And we wanted it to be in our neighbourhood, so it was a celebration that felt like us.

We locked everything in before we announced it, an afternoon ceremony at Arthur McElhone Reserve overlooking Elizabeth Bay then a reception at Mad Pizza in Surry Hills for 90 people. Don’t laugh, it was a great space, good food, lots of booze, room for a DJ and you could party until 1am, they wouldn’t kick you out at 11pm. We’d planned a round of espresso martinis for all at midnight to keep everyone kicking on and instead of a cake, they were happy to create a tower of ricotta cannoli, my favourite. It was exactly what we wanted.

One of the prettiest parks in Sydney and part of our dog-walking route
One of the prettiest parks in Sydney and part of our dog-walking route. Image via http://www.placepartners.com.au via Google Images

But then the venue called. Their landlord was cancelling the lease and they wouldn’t be open in October. We were devastated, it was a crisis of epic proportions.

And then I was diagnosed with cancer two days later.

Life may be what happens when you have other plans, but it sure has a fucked up sense of humor.

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.


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.

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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?

 

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.

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.

 

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.