Tagged: hospital

Black and blue

photo

I’ve always liked a bruise. They are the daytime soap opera drama queens of the injury family.

All flamboyant colours, spectacular visual representations of pain but very little actual substance. The kind of injuries you can proudly show off to a friend without them gagging in disgust, and boast of the “dangerous” situation by which you acquired it, all while sipping a latte and reading the paper.

Well, my friends, this bruise is not one of those bruises. And this is a G-rated photo of said bruise. If you want the full bruise experience, you need to ask me sweetly to show you a picture of my swollen naked arse and bloated purple thigh (or you could forego the photo and ask to see the real thing, I’m usually happy to oblige). And yes, I am wearing bike pants. Doctor’s orders. Ho ho ho.

OK, Niccola, what gives? Aren’t your medical mishaps normally in the breast department?

Why yes, kind reader, they are! Let me get you up to speed, because you haven’t heard from me for a while. These last three months have been a sequence of blues, and blacks, and purples and yellows. Firstly in the stomach department, courtesy of an injection called Zoladex. Zoladex is a friendly little syringe roughly the size of an elephant gun who gets hammered in to my gut monthly and leaves me in a permanent state of menopause with a bruise that looks like I’ve been assaulted with a rock melon. Nice guy, huh? Bastard.

I thought Zoladex was the baddie in my life, but that was before I experienced liposuction. Liposuction? I know, what is this, an episode of Real Housewives of …? Actually, I like to call it Real Housewives of BC.

Yes, liposuction. The first stage of my breast reconstruction involves what the surgeons delicately label “scar revision”. A so-called “minor procedure” that involves sucking the fat out of my thigh and injecting it in to the cavities formerly occupied by my breasts. “Minor procedure” my swollen purple arse!!!

My breasts are actually faring the best throughout all of this. They are sitting peacefully on my chest with minor, quite subdued bruising, neither concave or convex, not causing anyone any problems.

But my left thigh has swollen to twice its normal size and turned a deep, royal purple. And this is not one of these latte-sipping drama queen bruises. This is a hugely painful affair that means I groan every time I stand or sit (on one buttock only) and hobble around the house in my two pairs of bike shorts.

Minor procedure??? I’d hate to experience what a major procedure is like if this is considered minor. This hurts worse than the bilateral mastectomy. Cellulitis aka The Elephant still wins the pain game but this comes a close second.

Ladies, think twice before you nip down to your local hospital to get a bit of fat sucked out of your thighs. I like my fat. I miss my fat. Cosmetic surgery is so barbaric. I can’t imagine how or why people would elect to go down this path. It’a messed up world where people are starving on one continent while adults are getting their fat sucked out on another… Go to the gym if you don’t like your fat!  Or love yourself the way you are! Grump grump grump. My butt hurts.

What else can I tell you? My beautiful puppy has also been under the knife, and has had a terrible surgical run of it as well. Like dog like owner. Bizarre.

photo-1 photo-2

She also has a messy looking thigh.

We’re a good pair, hobbling around the house together. But the important thing is, she’s home, as am I. We might look a bit messy but we’re A-OK and happy to have each other.

The best thing about bruises is that they come and go. In a week or two they’re a distant memory. They’re not like scars, things that stay with you, a haunting reminder of what’s been. In another few days, I’ll shed my daggy bike pants and return to the real world as though nothing bad ever befell me. And hopefully this bruise leaves a good legacy, a formerly scarred pair of breasts that are ever so slightly closer to being new again.

x

Advertisements

Totes anaphylaxic

photo-1

Nobody thought to tell Saskia that I also owned an elephant. The poor hound didn’t expect to be sharing a bedroom with a creature that wanders muttering around the house at night, keeping a drug diary and microwaving heat packs at 4:20am.

It’s done wonders for her toilet training though, as the three of us mosey around the courtyard three or four times throughout the night, my bald head twinkling in the moonlight, all in relatively good humour considering the situation.

And then I had to have a colonoscopy and endoscopy as well. I keep having blood transfusions, and then the red blood cells vanish, leaving me gasping for air within about three weeks. Has the elephant developed a taste for red blood cells? The oncologist thought that maybe the red blood cells were going missing because of an ulcer or internal bleeding, but nothing became apparent despite the battery of tests.

At the height of the special colonoscopy diet, Saskia had the pleasure of watching me sip laxatives, clear beef soup, green jelly and icy poles all at the same time (5:36am!), and then bolt for the bathroom. Only a puppy can love you at a moment like that. She would drape herself languidly on an abandoned pile of pyjamas and patiently wait until I returned from the bathroom, wagging her tail delightedly. I love you the most right now she would happily wriggle. I just love being near you! I love you the most at 5:36am with the runs! I can barely contain my love…

Can you tell why I love her right back? Love love love you too, Saskia!

As the nurse’s (and thus my own) fear rapidly escalated re the elephant, my surgeon as usual fluctuated wildly between totally deadpan You’re fine. Purple is a fine colour for skin. Pus is positive. And what’s wrong with eating hardcore pain meds like they’re M&Ms? and spontaneously over reactive Can you come in at 12:45pm for emergency surgery, and can you start fasting… Umm… Now?

My answers, by the way… Purple is not nice. Pus is not fun. And hardcore pain meds not working anymore is just plain scary. And painful! and While I am already fasting, it is for a colonoscopy, and no you will not be spontaneously performing emergency surgery on me this afternoon. Besides, I have nothing left to operate on!

Jesus wept!

(Sorry, my true believing friends, I truly don’t intend to mock, but I can’t find a more accurate way to express my frustration and sadness.)

So today I left Saskia chewing on an oversized lamb shank and walked the elephant to hospital.

photo

We were due for my first round of twelve weekly doses of Taxol, but first I had to work my way through three fat bags of B+ blood with my name on them. Transfusions are slow. They drip drip drip away, and I was entertained first by my dad keeping me company, and then dozing in a recliner, trying to recover from several weeks of elephant filled dreams. Sleepy and uneventful, I’d call it.

And then six hours in, the Infectious Disease Registrar turns up. She is the Elephant Specialist at long last! Can she teach me how to kick this bloody cellulitis? Please please please?

Then as I’m deep into giving her my medical history, something strange happens. I can’t breathe. I can’t think. I can’t remember what I’ve said, or am saying, and I’m scared but even more scared to admit something is going terribly wrong. I feel very faint and I feel very strange, can you call a nurse?

Not one nurse pours in, but eight or ten. It turns out that they started giving me my Taxol six minutes earlier, and they’d been standing by in case of anaphylaxic shock. Apparently, my chest turned red and rashy over a few seconds. Like magic the nurses injected me with cortisone, were on to me with blood pressure monitors and were holding my hand and stroking my back as I sobbed and tried to breathe.

Have I just become another bad statistic? Again? Seriously?

Everything that happens after that is blurry. I’m given something called Phenurgan and it makes me pleasantly sleepy. The poor Elephant Specialist stands well back, shamefaced, as though her case history caused me to have a near death experience, and quietly asks if she can photograph the elephant and show it to her supervisor.

There is a lot of quiet chat, and I gather that I’m not getting my Taxol today. I’m not getting an elephant cure today either. And I just lie back in my recliner and wait to be taken home to my bad puppy who loves me any old time.

Love you all as well. Even at 5:36am. Even when it’s raining.

x

photo-2

Ugly pug tits

If you’re a sweet, sensitive soul, you might not enjoy this post. But it amuses me, and thus I can’t help but share. So please be amused, not offended by what I’m about to share.

I want to tell you about my favourite nurse, and why it is that she holds this honorable title, and there’s no better way than sharing an exchange that we had today.

A special dressings nurse came by to check my wound post-surgery and dress it before my discharge from the hospital. She pulled back the layers of bandages and unwrapped a very wide, very deep hole in my chest. My favourite nurse, let’s call her Nurse G, stood by.

We all admired the hole for a few seconds. Let’s say that surgery is a lot like mining. All my surgeries to date have been the type of mines where there’s untold masses of work happening beneath the surface, but on the surface (the skin) you’d barely know. A few stitches, a scar, that’s the extent of it. Well, my new wound is an open cut mine. I now have an open cut mine the size of a big coin and a good half inch deep sitting below my right breast. I half expect to see a tiny mining truck chugging up the side.

It’s more open than I expected. I say at last.

Your skin is harder than I expected says the dressings expert.

I’m more concerned about the breasts above it! says Nurse G.

I call them my ugly pug tits. I reply.

I was thinking sausage dog… Nurse G suggests.

No, sausage dogs are better looking than that. I reply.

Well, I didn’t like to say it… says Nurse G.

I know, I know, the whole interchange sounds tacky and tactless but it wasn’t at all. Nurse G was able to turn a disturbing new discovery of what the medical profession had done to me this time into something we could all laugh about.

I also loved that she was honest about my breasts. It takes a big person not to lie when it comes to something sensitive like botched up breasts. It’s much easier to make evasive comments or say nothing at all. And it’s best to laugh because, as the cliche goes, laughter really is the best medicine.

I love Nurse G, and wish she could always be by my side. She is unfailingly honest, incredibly experienced and deeply involved with her patients and their well being.

The depth of her experience means that nothing phases her, and you know you’re in the safest hands when she’s around. You’re so safe you can have a laugh along the way.

She’s the one who told me that six doses of the chemo drug I’m on now will kill you. I’ve just had my fourth. I found this remarkable more than terrifying and that’s because I was in her company when I heard it.

Immediately after our pug tit interchange she went and arranged for a community nurse to come around to our house every two days for the next 4-6 weeks to clean my wound and redress it without me having to trek in to hospital. I just hope the community nurse has a fraction of her depth of experience and humour.

Big love to you, Nurse G.

x

The elephant returns

I know how you all like stories about elephants. Many of you have told me so, which is flattering indeed and makes me feel like a Writer with a Capital W.

Sadly, I’m not sure I like stories with elephants any more.

I’m writing this from a rather small but blessedly private hospital room. I say blessedly private, because no-one deserves the punishment of sharing with me and my elephant.

Despite the two surgeries following the mastectomy, the elephant never really left. I thought I’d seen the last of him as I finally went off antibiotics a week and a half ago, but then he started sneaking back in the dead of night.

He developed an unquenchable appetite for pills. Every two hours he’d trumpet for something. I had my work cut out for me tossing Panadol, Nurofen and Endone his way (Side note about Nurofen… It turns out Ibuprofen is really not good when you’re having chemo. I wish I’d known this before the elephant developed a taste for it!). I’d try to buy him off with heat packs and he’d snooze happily for twenty minutes and then yell MORE! just as I was falling asleep.

And then he started spurting pus everywhere. You know a room mate has to go when he spurts pus. That’s the deal breaker right there.

As per usual my crack medical team under reacted. He’s not the biggest elephant we’ve ever seen… they commented. Well, he’s the most painful I’ve ever had… I countered. And it’s true. At night he sits on this nerve under my shoulder blade and it’s bloody agony.

And of course, as tradition dictates, as we suddenly found ourselves four days away from chemo with a wildly out of control elephant on our hands it was “to hospital to hospital jiggity jig” all of a sudden.

After one stunningly sleepless night where the elephant terrified a night nurse with his constant trumpeting and unreasonably frequent demands for heat packs, suddenly everyone in the hospital was treating my elephant with far more respect. We even got to meet an elephant specialist (his business card said he specialised in palliative care but he was at pains to reassure the elephant and I that we weren’t dying quite yet… Well, me, anyway, watch this space Mr Elephant). He came up with a “pain plan” whereby the hospital has to give me pain control whenever I ask, which felt like a bloody miracle and made the elephant dance a happy jig.

And my surgeon announced that what the hell, let’s go for surgery number four which seems to involve washing the elephant out from the cavity left behind by my now deceased right breast.

So once again the elephant has been issued an eviction notice and I await yet more surgery. I must admit all my optimism and enthusiasm is a little on the wane at this point. I hate the following things about surgery: the stupid socks you have to wear afterwards, the horrid anti-coagulant shots they make you get in your thighs which then bleed at the drop of a hat, the scarring, the queasy feeling post-anaesthetic, and the occasional really weird dream. They also cover you with stickers which you keep finding days later which kind of feels like the medical equivalent of those “kick me” stickers that people thought were hilarious in late primary school.

However post surgical pain is seldom, perhaps never as bad as out-of-control elephant pain and as such once again I’m giving my consent for a little more body violation.

On the plus side, I have something very exciting to look forward to this weekend so by hook or by crook the psychopathic pachyderm has got to go. All will be revealed, it’s going to be awesome! I figured I owed myself something wonderful and the timing couldn’t be more perfect.

See you all on the other side of surgery number four… Sans elephant of course… And with nice news attached.

Much love, as always.

x

To lose two breasts is unfortunate. To lose three looks like carelessness.

Oh ho, what fresh hell is this?

I came in to hospital, you’ll recall, because I was having issues with an elephant. Well, it turns out that when your elephant has gone unchecked for so long, he won’t be deterred by IV drugs alone.

No, you must have your elephant surgically removed.

Sounds drastic? It is. Yesterday I had my third breast surgically removed. And you know the greatest irony in all of this? Leftie was the healthy one! Poor Leftie didn’t even have cancer in the first place. Leftie died, first time around, for the greater good and now how do we repay her?

I know this is all a bit odd and hard to follow, so I’ll try to summarise it simply. Two months ago, I had a bilateral mastectomy. The right breast had a rather nasty cancer lurking beneath the nipple so it had to go. Because I have the bad cancer gene and knew it was very likely that I’d have another breast cancer over my lifetime, I decided to get my healthy left breast removed as well.

At the advice of my breast surgeon, I had the first stage of breast reconstruction immediately, during the same surgery (two months later, Medicare still can’t get their heads around that, but that’s a different story).

So, following the surgery, I had breasts. A bit high, round and odd, but breasts nonetheless. Over a period of weeks, my new breasts were expanded with saline, via a humorously oversized needle. Oh, the things these breasts have seen.

But then, as you’ll know if you’ve read the elephant post, Leftie turned feral.

Obviously a bad bug settled deeply into the implant on the left side, and no amounts of antibiotics would flush it out.

After a weekend of feeling really rather neglected in hospital (by the doctors, not my amazing support network), on Monday morning, my oncologist stormed in, fresh off an overseas flight.

That left implant has got to go, it’s held us up long enough says she. I never approved of getting a breast reconstruction pre-chemo! she adds. And honestly, she didn’t. But that’s because my arrogant surgeon didn’t let me meet the oncologist until after the surgery. Useless much? Yes.

Monday was an angry day.

I couldn’t honestly believe that as a result of all my myopic, self-centered, uncommunicative specialists (and this is the A-Team, remember!) I was going to lose Leftie again. I mean, for shame!!!

I insisted on a meeting of the Big Heads (in this case, my plastic surgeon and my oncologist), which to their credit, they both turned up to. And after some initial tensions, we eventually all sat down like some kind of “A-Team” (hah!) and as a unit agreed that Leftie had to go. What I needed was some basic sign that the various Big Heads actually realised the scope of what they were about to do to me. They were going to put me into immediate emergency surgery to clean up a mess of their creation. My problem was that the oncologist kept on saying that it was just a breast but it isn’t just a breast, it’s my bloody breast and it’s already mangled with a whopping great scar and it’s been stretched for weeks and weeks and fricking weeks so don’t tell me it’s just a breast.

You can get an idea of my state of mind. My oncologist’s core point, as usual, was that if I was dead due to lack of chemo, my breast was kind of irrelevant. Do you think I don’t know that? I mentally raged. Do you think that after all these months that I honestly haven’t figured out that cancer is life threatening yet? What kind of a moron do you think I am?

This is not about perspective, or values, or priories, but it is about my expectations. And I expect my A-Team to not only save me from cancer but also to acknowledge that I’m a complete human being and as such I give a shit about superficial things like breasts, and pain, and the almighty time suckage that comes out of a medical screw up like this one.

Whoa, still angry.

Anyway, obviously I somewhat managed to get my point across and eventually we were all singing from the same hymn sheet, albeit out of tune, and so I signed the consent form to have Leftie cut out, for the second time.

Isn’t that just the best part? That in the end I get to be my own executioner and sign away the life of a breast (again!) that was perfectly healthy to begin with!

On Tuesday the deed was done, and the surgery went fine, as always. It’s nice to know that I can depend on my ability to bounce out of surgery, Tigger style. It seems that some primitive life force springs out and dances around inside me going you’re alive, you’re alive, you’re alive and you’re marvelous! so thank god for that. Thanks, body and spirit for being so unerringly optimistic in a shitty time such as this.

I hope that Leftie died again for a worthy cause, to help me get over this infection, to drive my elephant of pain away, to let me get on with chemo and knock that cancer dead once and for all.

If all that happens, as my A-Team promised me, then I’ll begrudge the six months of having to wear a fake boob (a prosthesis, as they say, which for some reason makes me think of comical false ghoul teeth).

I can’t wait to see what Medicare says when they hear that I’ve just had my fifth boob operated on. Tabloid TV, here we come.

Lopsided, walking in circles, half boobed love to you all…

x

The elephant in the room

This is a slightly difficult post to write, because I finally have to address the elephant in the room. If you’ve never heard the phrase before, you’re probably thinking that chemo brain has finally settled in. Fear not, this elephant is no result of chemo. His name is Pain, and he’s been my constant companion this last month.

This elephant of mine, I can see him, and my nearests and dearest can see him too. However, the medical profession resolutely could not see the elephant, up until two days ago when his looming presence actually showed up on an ultrasound and his weight displayed itself as a nasty mottled purple zone around my lower left breast.

Around the time of my egg harvesting, I had a most terrible weekend of pain. The harvesting itself was a walk in the park next to this unbearable, heavy, seering pain that had settled itself in my chest and back. I know that I stoically announced that pain was nothing next to fear shortly after surgery. Well, that pain was not this pain. It sounds bizarre, doesn’t it, that I could be spontaneously be hit by pain many times worse than the straight out of surgery, four drains, no breasts, a few battered lymph nodes pain.

But that’s the truth of it. I went to my surgeon and he said… nothing. He smiled sweetly and told me that I shouldn’t be worried about taking lots of heavy duty pain meds, and that this would pass, naturally, in time.

So the elephant and I battled on.

And a week or two passed, and I returned with my elephant, and still I was told that there was nothing to worry about. As I had started chemo, I was reliably informed that this elephant (if indeed such an elephant existed) was actually the responsibility of my oncologist.

So I led the elephant to my oncologist and she told me in no uncertain terms that if there was an elephant it was not a chemo elephant, because they are an entirely different species. This here (theoretically) was a surgical elephant.

So the elephant and I returned home once again, and we started having the most frightful shakes and shivers, and I wound up in the emergency department with my elephant. In emergency, they too failed to see my elephant. They failed to see anything, and when there is clearly nothing to pin symptoms on in the medical world, they have a name for this elephant. They call it a virus. So my former surgical now viral elephant and I returned home.

And another week passed, and the elephant grew so big he stopped me from leaving the house, and he would wake me constantly at night, not even every two hours, asking if he could have another pain killer please?

And still we shivered, and still we sweated, and I grew angry, and took my elephant back to the surgeon. I explained that he was clearly not a chemo elephant nor a viral elephant. I demanded that if no-one was to take responsibility for my elephant, that at least we must train him. The surgeon didn’t approve, so I went to the breast cancer nurses to see if they could see the elephant. They thought they might see an elephant and prescribed a few more pain killers just in case. At the same time, they saw a mouth ulcer and tonsillitis and thought perhaps they could pin the shivers on those culprits. So they sent me home with drugs to battle those new invaders, plus kindly agreed to find me a physiotherapist who specialised in disciplining out of control phantom elephants.

I appreciated this, as it appeared to be some kind of concession that the elephant existed.

Then over the next weekend, the elephant really went all out. He painted the house purple and trumpeted all through the night ensuring that I didn’t sleep at all.

So… (boy oh boy is this a long elephant story) on Tuesday I took my elephant back to visit the nice breast cancer nurses, and now that he’d painted the house purple it was pretty obvious he existed, so they photographed him on my iPhone and sent him to my surgeon.

The text sadly did not not actually read “Definitive Proof That Surgical Elephant Exists” but it did the trick regardless.

The elephant and I were taken for an ultrasound and the ultrasound technician knew exactly the species of elephant, bless him. Cellulitis, which is a soft tissue infection.

After another 24 hours, the elephant and I went to visit the surgeon again, this time wearing only a sun dress because it was hot.

Well, praise be, this time he saw the elephant! Its clinical name was Cellulitis, not Pain.

So the elephant had a name. But how, pray tell, does one treat a one month old out of control elephant on a rampage?

With IV drugs of course. For five days minimum. In hospital.

This is the end of day two, and the elephant is still with me, although I’m hoping I’m seeing signs of him weakening.

What is not weakening is my anger. When I say there’s a bloody elephant in the room, there’s an elephant, ok?

I have now lost a month of my life to an elephant. I haven’t worked in weeks, and even my chemo schedule is screwed up because you can’t go for chemo with an elephant.

So all I can say to patients everywhere is get feisty if there’s an elephant in the room. I didn’t, and look where it got me.

Someone get me an elephant gun.

Observations from the chemo ward

Another “waiting room” post. So much waiting! I thought I’d put down a few things I’ve observed in my many hours in the waiting room so far. Interestingly, it’s not the chemo patients who act bizarrely, it’s their companions.

“The Cougher”. The Cougher coughs loudly and theatrically throughout his time in the waiting room. Let me explain for the uninitiated. You do not cough on a chemo ward. If you need to cough, you walk away to anywhere but here and cough there. And don’t come back. Do you not see the stricken looks on all the other chemo patient’s faces? Coughing around the immune suppressed is really not cool.

“The Tragic”. This is almost always the teenage daughter of a chemo patient. The Tragic manages to whip herself into such a state of teen hysteria that she looks considerably sicker than her mother. And thus her mum worries about her. Honestly, life as a chemo mum looks bloody impossible. What is interesting is the transformation when mum goes for treatment. Then The Tragic returns to merrily texting her friends and listening to tunes on her iPhone.

“The Perver”. This charming man uses his time in the waiting room not to support his wife, but to check out all the young girls in the waiting room. The young girl is normally me. Must I dress like a monk when I come in for treatment to entice you to pay attention to your wife?

“The Impatient Spouse”. This person, usually female, errs on the side of over- rather than under-indulgence of their spouse. They rage that everyone seems to be getting faster/better treatment than their spouse. They stand at the reception desk and complain while bald chemo patients queue exhaustedly behind them.

Again, what interests me in all of this is how well behaved the actual patients are! No coughing, groaning, complaining or perving. Perhaps there just isn’t enough energy left over for drama?

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

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