Tagged: side effects

Hair and now

So, as I keep alluding to, my fuzz is coming along great guns. It’s also being rapidly joined by eyelashes and eyebrows, to my great relief! It looks to my eyes like it’s growing in a sort of gunmetal grey colour, but I could be mistaken.

What amuses me about my fuzz is how people respond to it. In general, women claim to love it, men seldom acknowledge it, and then once in a while someone wants to pat it. This I understand completely – a fuzzy head is awfully nice to pat. I have befriended a number of (high camp) local gentleman who yell out Babe, love your hair! as I walk on by.

As to how I feel, I’m not quite sure. I’m ecstatic to have hair at all, but I can’t quite adapt to my face as it is now.

So, kitandkabooble brains trust, what do you think? Here are a series of photos – before, during and after chemo.

Nic_2

This photo was taken about a week into chemo by my very talented photographer friend Fi. I was miserable and nauseous, but I feel in retrospect the photo shows great strength. What long thick hair I had!

wig-photo-1-BW wig-photo-2-BW

These two are photographic evidence of the wig and painted on eyebrows I wore to the very lovely Kylie and Ian’s wedding. Fun fact: that’s another wonderful friend named Fee in the photos. Love my Fionas. Thanks Kylie and the talented photographers for these photos!

Nic_1

And here I am now. Is the transformation as big to everyone else as it feels to me?

x

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Playing dress ups and losing eyelashes

wig-photo-1-BW

Another long silence…
And where have I been?
I’ve been to London to visit the Queen.

No, not quite true.

I went to the “Great Lakes” (remember, this is Australia, people, so our “Great Lakes” perhaps aren’t quite so Great… They don’t have their own tides, anyway…) for a wedding. More on that soon.

Round three of chemo was mostly uneventful. The main thing I can gather is that every time you think you’ve got its measure, chemo trips you up and laughs in your face.

In this case, over the first weekend (days 3 and 4) I felt all very jolly and ate my way through the nausea. “Ho ho!” says I… “Ha ha!” says the chemo and socks me for days 5, 6 and 7. I believe I lived on white beans, grapefruit and peanut butter. Yummo. And then my eyelashes and eyebrows started to fall.

I wish I was the type to wish on eyelashes. I would’ve had so many wishes that I could’ve wished myself clear into May next year.

It wasn’t until I was putting on mascara before the wedding that I realised just how many of my eyelashes had jumped to their death. I’m used to having quite thick lashes and needing to treat mascara with respect and caution so that my lashes don’t turn into hairy spiders crouching on my face, but that is definitely not an issue right now.

The wedding was on the very lovely Boomerang Beach, which sits between Smiths Lake and Forster. Despite the fact that we were well into November, the wind sprung up and it was quite cold and so I decided to premiere my wig.

If our neighbours caught sight of my preparations (a very bogan family with a son named Tyson!) they would have been perturbed indeed… And possibly lynched us.

First my fake breasts went on… Then my wig… Then my contact lenses… Then I pencilled my eyebrows back in… And outlined my thinning lashes… And bronzered my cheeks to bring back a little colour… And popped a hat on my head for good measure (wouldn’t want the wig skittering off down the beach!)… And then the woman within was released.

I should really hunt down photos.

What was quite gratifying was that one ex-workmate who I hadn’t seen for a few years was entirely fooled by my charade! He was quite shocked when I told him I was entirely bald and undergoing chemo.

We had a wonderful night. Thanks so much to the talented and lovely bride and groom for putting on such a gorgeous wedding. I even danced a bit (Gangnam Style!!! My HOAC friends would’ve been impressed I think).

For a day or two I was entirely released from cancer world, and it was blissful.

But all good things must come to an end, and as our trip wound up I felt an all too familiar pain in my breast. My cellulitis had returned.

I’ve been doing a lot of “reading” recently. I say “reading” in inverted commas because it’s actually “listening”. I have a subscription to audible.com which I can’t recommend highly enough. The big advantage of audiobooks is that when you’re in pain and unable to sleep in the wee small hours, you can “read” for hours without disturbing your other half.

Well, I can’t help but notice an alarming trend in what I’m reading. First Haruki Murakami’s 1Q84 (epic) and now the Hunger Games trilogy (please don’t judge?). It seems that I’m drawn to books where people find themselves, or exist within, alternate worlds where they are trapped and must find their way out… with or without violence.

I feel the same way about the cancer, the chemo, and the cellulitis. I’m stuck in a world that I never wished to be a part of, and all I can do is slowly grope my way out as best I can. I’m out of breasts to operate on. I just have to hope that the oral antibiotics will work at long last, and that I can kick the cellulitis into next week (no… further!) without having to go back to hospital.

Keep your fingers crossed for me.

x

Chemo radio silence

It’s been a week now since surgery. I kept trying to write sooner, but honestly I didn’t have it in me.

On Thursday, I was released from hospital in yet another comedy of errors.

Both the oncologist and surgeon agreed that I could go home from hospital, but neither actually informed the hospital of their intentions. I was meant to have chemo as an inpatient before being released, so I spent Thursday in a state of increasing hysteria as hospital life went on as per usual, with no sign of chemo or any indication that I would be discharged from hospital.

It was 3pm by the time I figured out that the hospital hadn’t heard that I was to be discharged. It turned out that they were awaiting a bed on the chemo level so that they could transfer me and my treatment would continue as an inpatient, with me staying on in hospital.

I hit the roof.

You can’t tell someone they’re going home from hospital and then say “oops, no, you’re just getting some chemo in a whole new ward and staying on” and expect it to go A-OK.

Anyway, to cut a long story short (I’m boring me), I was in my new hospital bed for a whole three hours before successfully escaping the hospital and returning home.

Thank. God.

I think with all my hospital rabble rousing and hysteria I gave a close family member the impression that I wasn’t just planning on skipping the hospital, but my chemo and future treatment and future livelihood as well.

Let me assure you that if I decide to skip out on my treatment, I won’t be returning home to Darlinghurst, five minutes away from the fricking hospital.

I will be booking a one way ticket to deepest, darkest Africa, or maybe sun kissed Mauritius and you will be hearing nothing from me. Not a thing.

So here’s where I’m at.

I’m bald. Really really really really bald. The shaved head was cool. It had street cred. My new mannequin head is not cool at all. It’s freaky. I’ve been looking at it for a week now and it’s still freaky.

I’m also nauseous, and exhausted. The latest round of chemo really hit hard. Evidently the last round was insufficiently vile and so they upped the dose (true).

I also only have one breast. So any remaining body confidence I had is now a distant memory.

The chemo also brings with it depression, so I’ve been alternating tears and rages, favoring the tears. Pity, because I actually think rages are probably more fun, but I’m just not really the raging type.

Cancer, you’ve really got me now.

I honestly spent a week trying to figure out a positive way to present this, on this, my happy blog.

But the simple truth is, sometimes you just have to say it like it is and say yes it sucks.

I managed to avoid the cancer feeling for a really long time. I was diagnosed on June 8. I had the bilateral mastectomy on August 8. I went through IVF and then started chemo, and then lost my third breast on October 8. So really I’ve done pretty well to go this long before going and now I really feel like I have cancer.

Superficial I know, but I think it was the baldness. That’s the point where I ceased to even feel comfortable in my own home. I keep a hat on standby at all times in case someone comes to the door and avoid open windows on to the street.

So, in response to the concern that I might run for my bloody life, all I can say is, it’s too late. I had ample time in the first four months to bolt when I was healthy(ish) and looked like everyone else.

No, I’m here, and hanging in here.

The side effects of round two are lessening now. Hopefully within another few days I’ll be back on my feet properly.

I’m sure I’ll get my head around the hat/wig/scarf thing as well, but I think it’ll take some time.

Currently I’m shunning the scarf thing because it looks too cancer. It sounded like a great idea in theory but in practice I just look tiny headed and sick. The wig is pretty hot, and as it’s headed for summer here I’m not sure I should get too dependent on it.

It seems that caps and hats are the go, so I’ll be building my collection rapidly.

I’ll also need to get myself a fake tit (charming) which I’m sure will make for an interesting blog post.

So bear with me. Allow me my space to whinge and mourn and tell the truth and I’m sure things will be on the improve soon.

Much love.

x

Shits and giggles in Chemo World

Oh dear, I think I scared you all with my string of Grumpy McGrumpy posts!

I’m sorry good people, chemo hasn’t permanently disabled my funny bone, it just put it out of joint for a week or so.

Today I had a day that was weird and funny all that the same time, so I thought I’d put it down for my own amusement.

I was called back in to hospital this morning, my temperature was happily bouncing between 36 and 39 degrees and I was alternating shivers and sweats (The wrong way round… How weird are fevers?). I tried to walk to hospital and wound up sitting on a low wall gasping for breath and then hailed a cab and offered the cabbie ten bucks to take me the 400 metres to the hospital.

Anyway, I returned to my friends in HOAC (please google the acronym if you’re curious, I still have no clue what it stands for) and they lost no time in sitting me beneath a TV in a recliner I was too weak to recline and taking blood straight from my chest. I love the Port. So futuristic. I feel like I’m in Star Trek whenever they “access my Port”.

OK, now the amusing part. As I mentioned, I was seated under the HOAC TV, so I had the entire cast of HOAC sitting amphitheatre style, all plugged in to their drips in their recliners, watching me and the TV above me. HOAC looks a lot like Double Bay (for those uninitiated to the pleasures of Double Bay, it’s where everyone is well-heeled, Eastern European and has high hair).

What was playing on the HOAC TV was a broadcast of various dancers doing their versions of the Korean Pop sensation PSY’s Gangnam Style music video (again, please google… I’m blogging on my iPad and I’m not sophisticated enough to add a link).

Anyway, what with me living under my Chemo rock and all, I had no idea what all this Gangnam business was about? I couldn’t see the TV and could only watch the rhythmic head bobbing of HOAC in time to the music.

Thankfully Double Bay housewife number 1 was able to explain to HOAC very succinctly what a “meme” was, what “going viral” means, and what a big deal “Bieber’s producers are asking questions” is. Cue many grey heads nodding sagely.

Oh, I couldn’t wait to get home and watch that clip, and I was not disappointed. It seriously made my week! If you haven’t seen it, do hunt it down.

So I did my time at the hospital, and proceeded to Strange But Amusing Activity Number 2, my chemo haircut. Sounds depressing, doesn’t it?

Well, it was not, thanks to my hairdresser who is pretty much the most low fuss person in the universe. She was moving fluidly between cutting off my weighty tresses and doing the most amazing perm on a cross-dressing Asian chap who was wearing the best (ladies) shoes, and lectures in business studies. Only in Darlinghurst.

He was ecstatic with his perm, he had a buzz cut to his ears and these unreal curled tresses reaching skywards above it. He looked like the front man from The Cure and kept giggling “ooh, I need a tiara!”.

This was the perfect environment to lose about 30cm of hair in. It was so nice not to be in a “cancer space” and just to revel in the sillyness of it all.

I came out with a shaggy little pixie cut and feeling considerably younger again (thank god!). The final sweet point was when my lovely hair dresser refused to accept any payment for the cut. We hugged and I promised to return with whatever weird regrowth I come up with in six months time.

Now, final silly thing. I have been ridiculously excited about the new crazy Willy Wonka-ish range of Cadbury chocolate bars. I was once a real highbrow chocolate connoisseur. I am a connoisseur no longer. Chemo has given me a craving for really cheap chocolate and I was obsessed with getting my hands on these new chocolate bars. We finally cracked one open with devastating results. It turns out that the chocolate in question contains space dust (the popping candy that crackles in your mouth). And it also turns out that of all the things that turn feral and weird in combination with chemo, nothing tastes weirder than space dust. It pretty much tastes like nuclear waste shooting around my mouth.

Charlie is now delighting in the fact that he has a full chocolate bar all to himself and is crackling and foaming at the mouth. I will now seek out the non space dust Cadbury options. Or just jellybeans.

So there we have it, Munchkins, I think I’m getting the measure of your strange land. At least it’s starting to amuse me again…

Much love and giggles. Now go and watch that music video! Go!

x

Toto, I’ve got a feeling we’re not in Kansas anymore…

This is one very weird new world I’ve found myself in.

A world where, while everything around me has stayed the same, I’m simply not the same person you saw a week ago.

I’ve aged. My skin is grey and I have black bags under my eyes. I’m suddenly weirdly thin and gaunt looking, and I’m really not the thin and gaunt type. My face and torso are covered in tiny, angry looking pustules. My hands shake and I’m hunched, because my back and chest just won’t stop aching.

Last night, I was admitted to hospital, because I suddenly got a fever that raged up past 38 degrees and then up past 39 as well. I should’ve seen it coming when I climbed a flight of stairs and felt like I was going to be sick when I couldn’t catch my breath.

I was slow to react because I simply couldn’t believe that a healthy 30 year-old could turn into a frail old lady in a week.

Thankfully, I was out of the hospital a bit before midnight. After a whole lot of blood tests, a urine sample and a chest x-ray, the hospital decided that I wasn’t in complete immune collapse and that it was probably a passing virus that had just decided to pop by to say hi.

Apparently the Australian government won’t let me get a white-cell booster shot to perk up my immune system until I prove my immune system is compromised. I’m hoping this is proof enough?

I’m really hoping things will pick up soon. Maybe I’ll meet the Scarecrow, or the Tin Man, or the Mayor of Munchkin City might give me the key to the city or something. I’d like to think that eventually Chemo World might feel a little more like Normal World, even just for a few weeks here and there.

Thanks again for all the lovely emails and comments. I think this post might explain my lack of personal responses to all you lovely people. Be assured that it’s wonderful knowing you’re out there.

x

Ginger beer, ginger cordial, ginger ale, ginger tea, ginger nut biscuits

Hmm… must be a chemo post!

So, the other day, I wrote of my disappointment that none of my chemo tablets sent me down any rabbit holes. And I stand by that. Could’ve been cool.

However, I must give a shout out to my little white tablets (let’s not use drug names here, it feels a bit crass) because they’ve pretty much become my closest friends these last few days.

How to describe the chemo feeling? It’s that feeling you get when you’ve got a stomach flu, haven’t eaten enough, and stupidly combine a beer/wine or two with your cold and flu tablets. Or is that something only I have been stupid enough to do?

Basically the white tablets take a situation where logically, you should be throwing up, and they wave their little white gloved fingers and go “Na-ah! Not on our watch!”.

I’m definitely lucky on this front, I know this pales next to most people’s chemo experiences. I’m told that the side effects compound over time, but for now it’s ok. Between the plethora of ginger products, highly processed white bread, whole heaps of sugar free mints and gum, and my friends the white tablets, I’m keeping on trucking.

Last night I even went to an amazing meal at Universal, to hear the very inspirational Michael Kirby talk, and ate my way through most of four (small) courses, all courtesy of my little white tablets and some very strategic non eating prior to the meal. My stomach didn’t thank me at 3am, but once again, those little white tablets were there to help. Go you good little things!

Sorry for the over sharing, but I said I’d be honest, and honest I will be.

Much (ginger flavoured) love…

x

Waiting for Chemo

When devising this blog post I toyed with going all high-brow-lit on you and doing a spin on Waiting for Godot where two protagonists talk back and forth beneath a tree and Chemo never shows up. Confused much?

I think it could be a hard read so I’ll give you the Readers Digest version instead.

So, the two protagonists are Charlie and I and, naturally enough, we have Chemo filling in for Godot. While we didn’t stay beneath a tree, talking back and forth, we did talk in a wide variety of other locations.

Location 1: The bus
Where Niccola declares that everything is terrible and the world is mocking her and look at all the shiny happy people on the beautiful spring day and why oh why do I have to do bloody chemo how unfair is that??? (Lack of punctuation more accurately recreates Niccola’s mono-whinge style).

Location 2: The IVF clinic
Where Charles gets his back up about the three remaining Judes. (Oops… update… there are now three very healthy SuperJude embryos safely frozen. Sadly the the other three Judes weren’t made of such stern stuff. We salute them all for their efforts.). We prepare to wage war on the IVF clinic but find that we’ve created sufficient waves within the clinic that the clinic has announced special dispensation for us. If all SuperJudes are found to carry the bad gene we now have permission to use them regardless. Small cheer!

Location 3: David Jones
Where Charles and Niccola pretend to be normal people for half an hour, seamlessly integrating back into the non-medical community and buying pants for Charles. They talk pants.

Location 4: The Wig Shop
Where Charles and Niccola seamlessly integrate back into the medical community and continue shopping, this time for a wig for Niccola. Niccola has a delightful time trying on wigs that enable her to fluidly move between personas including Jewish Princess, Double Bay Lady Who Lunches, and  Tuckshop Lady. Luckily it just so happens that there is a Niccola wig just hanging out looking cool, knowing it’ll get there in the end. And the moment it finds its way on to Niccola’s head it’s the one. The best possible Niccola wig that a Niccola could have. I think you’ll love it. But I won’t ruin the surprise – let’s see if you can tell my new wig apart from my (soon to happen) new haircut… I’m hoping to get a lot of “what a great haircut!” comments…

Location 5: Back at home
Where Niccola freaks out again “I don’t want to eat I need to sleep I don’t want to eat I’m not allowed to sleep I’d better eat huh???”

Location 6: The Hospital Pharmacy
Where Niccola and Charles make their second failed attempt at picking up the suppositories Niccola was prescribed for nausea. Apparently there’s been a real run on suppositories. A real run on suppositories? Niccola figures that if everyone else is so damn excited about suppositories they’re welcome to them and decides to try again tomorrow.
Suppositories? Really?

Location 7: HOAC (AKA Home of Chemo)
Where Niccola pops her first three chemo pills, erring on the generous side dose-wise with the one with anti-anxiety properties (Good idea! Clever girl!). She briefly wonders if these are Alice kind of pills and that perhaps she might get very big or very small? She doesn’t. Niccola is escorted to her EZ Boy recliner and everyone admires the Port (ah yes, the Port… must post about that!). They plug Niccola in and give her more anti-nausea meds, this time straight into her chest. So streamlined and futuristic! (Must experiment with attempting to contact the Mothership via the Port later.).

But seriously where the hell is Chemo?

Location 8: Still HOAC
Ah. Just as protagonist Charles has left the building to go and do some real work, Chemo shows up. Ha ha, Charles may not believe me when I tell him Chemo really does exist. I thought that Chemo was some freaky robotic type guy who gave you brain freeze and made everything taste metallic but I was wrong! Who knew? It turns out that Mr Chemo number 1 (we in the cancer business call him “A”) actually looks like red cordial and hangs around in a really big syringe. In he goes. Niccola waits for another Alice moment – will she meet the smoking caterpillar? No, she will not. She will meet Mr Chemo number 2 instead (we call him “C”). “C” doesn’t look like anything at all. He just hangs, all cool and standoffish on the drip stand. No Alice moments this time either. Not even singing daisies? Seriously?

Location 9: Still HOAC
Charles returns, and there is no remaining evidence that “A” and “C” even existed. Still quite possibly a figment of Niccola’s imagination. They leave.

Location 10: Back at home
Niccola waits expectantly for signs of the Chemo, entertaining herself by writing a very poor Readers Digest version of Waiting For Godot. The only sign? Aha. Niccola’s urine is now red cordial coloured. Aren’t you glad I shared? Yep. I know. Don’t thank me…

So… yep… that’s about it really. Return to your regular programming, people… Let’s hope it continues to be this non-eventful over the next three days…
x

Potential side effects include

Has anyone else noticed that side effects lists are unrelentingly negative and depressing? I’ve been pretty much bombarded with charming sounding lists of side-effects since I first heard what my chemo treatment will involve.

Without going all Wikipedia on you, my personal favourites include (but aren’t limited to): vomiting; nausea; diarrhoea; constipation; dry mouth; over-eating; under-eating; metallic taste in mouth; hair loss; nail loss; tooth loss; mouth ulcers; (deep breath…) possibly passing chemo on to partner via shared toilet, shared bed linen, shared vomit bowl, sex, kissing; (breathe…) increased UV sensitivity, low white blood cell count, vaginal dryness, depression (Really? Can’t imagine why?), and of course my absolute favourite, menopause.

Anyway, I thought that maybe I should combat all this relentless negativity by coming up with my own more positive list of potential side effects, to be read and re-read during my darkest chemo hours.

So here we go then.

Potential (positive) side effects include:

No further need for a hair dryer.
I’m sure it won’t surprise you to hear that I’m not the kind of girl who gets her kicks out of personal grooming. Fact: I have never dried my hair to actual dryness. Reason: I worry that my life would disappear before my very eyes if I waste that much time on something that boring and useless.

No more frickin’ hair removal.
I am doing a happy dance right now. Yay yay yay yay yay yay yay!

Improved self esteem.
I know. You’re shaking your head, right? Poor sweet optimistic fool. She doesn’t honestly think her self-esteem can be improved by all this, does she?
Umm, yes, I do. I can honestly say that I have more self respect and self love now than I did three months ago, and at any other time in my life. Not only have I learned that I’m brave and strong but I’ve also had to learn to define myself without depending on my breasts and hair. Being a young(ish), not-too-ugly girl is hard. It can be almost impossible to figure out when people respect you for you, versus when they just want a cute/funny/young/attractive girl around. From here on in, you will like and respect me for me only, and I will do the same.

Enjoying the little things.
When’s the last time you actually enjoyed and were grateful for a bus trip? Or a decent night’s sleep? Or a fresh slice of bread? I can claim all of the above for the last 24-hour period. I’ve never been so happy to just experience normal everyday things that normal everyday people do in my entire life.

Realising how much you love everyone (and hearing how many people love you right back).
Not that I ever wasn’t fond of my nearests and dearests, but I’ve never felt so loving, and loved, my entire life. If you’d asked me before this all happened how many really close people I had in my life, I would’ve thought… hmm… 5? Now the figure’s more like 25.

Getting a bit of perspective.
This one’s for you, Haters, Trolls, Whingers, Boasters and Blabbers. A flu is not a tragedy. A missed deadline does not summon the five horsemen of the apocalypse. There are more important things than how muscly your thighs look after working out. I don’t actually care about your juice diet. And that trip to Thailand is not essential to your happiness. Capiche?

A fresh appreciation for comedy.
There is always time to have a laugh, and the funniest things often come from the darkest places.

Empathy.
For the record, I do not like the term empathy. It reminds me of Tolerance Day back in high school where all the bitchy unpleasant Type A kids skipped around to all the people they tortured the rest of the year asking “why can’t we be friends?” for extra kudos. However, what I mean by empathy is a basic understanding that most people are carrying some kind of hurt around with them. If you haven’t had something major happen to you like the death of someone close or a major illness, just don’t assume everyone’s as fortunate as you. I see a lot of people causing others unnecessary pain at the moment and this whole experience has hammered home to me the importance of giving everyone the space and respect that they deserve. You never know if someone’s hurting, and it doesn’t cost you any extra effort to treat them with kindness.

Chemo chic!
Since this is getting all preachy, I thought I’d lighten things up a bit by commenting, in passing, that I’m not so secretly a bit excited about seeing food-obsessed me turn skinny with big(ger) fake breasts and a shiny bald head. You don’t get the opportunity to try on a new body every day so I figure let’s embrace the chemo chic look while it happens!

I start chemo on Wednesday and I’m getting an IV Port put in my chest tomorrow morning so wish me well good people. Love you long time.

x