Category: Saskia

Black and blue

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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.

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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

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Staring at the sky

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I’ve become one of those weird people who photographs the sky.

There’s little more annoying than someone who spontaneously stops in the middle of a busy street and photographs nothing, right?

I have, until recently, filed these people in the category of bad New Yorkers. Because there is nothing that screams tourist more than someone clogging the footpath and taking lame photos. Nothing. And no-one is less tolerant of a lame-o than a New Yorker.

But anyway.

I seem to look up more at the moment.

I keep getting struck by how amazing everything is. Sun is astounding. Rain is remarkable. Clouds are like nature’s emotions. And they’re all playing out right above our heads.

Find a metaphor in it if you’d like. For now I’m happy just photographing skies.

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Lucky number 31

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I never thought of myself as the type to deal in magical thinking. I was a realist. A rationalist. I dealt with things with the bare minimum of fuss, fantasy and fear. And then I got cancer.

I started off, true to form, brave and rational. I cheered myself I wasn’t scared of needles, or doctors. Truth: I was very scared of hospitals though. I didn’t have a nice history with hospitals. My hospital experiences were all tied up with death (my two grandmothers), near death (my mother’s horrific and extended experience with colitis) and fear of cancer-related death (my dad’s prostate cancer).

Now, nine months or so later, in that strange hinterland post treatment, I’ve had to finally admit that my superstitions run very deep indeed. And that there are fears where there were no fears before.

Two weeks ago, I wholeheartedly leapt back in to full-time work. And it was wonderful how everything slotted back in to place. It was pretty much, save for people’s polite queries regarding my shaved head, like cancer was a bad dream and that I’d now woken up.

Except it wasn’t a bad dream. Two days ago I returned to hospital to have my IV port removed. Oh yes, my trusty port. The port that gave me my chemo, litres of blood transfusions, five weeks of IV drugs. Was I happy to get it out? Hell, yes! Was I scared to get it out? Terrified!

Getting the port out meant saying to the world I’m done with this. Chemo is over. The cellulitis is defeated. I won’t need weekly blood tests. Treatment be gone! But new me, magical thinking me, quaked. Don’t tempt fate like that. Never say never!

Walking in to the hospital was difficult. For so many months the hospital was my turf. I felt safer there than anywhere else. I knew the secret passageways, recognised the nurses and enjoyed the changing notice boards and art displays. After just two weeks of work, the hospital felt foreign. Scary. A return to the nightmare.

And when I lay on the sliding metal X-ray tray with a pretty young radiologist saying It’ll only be three or four needles I felt faint. I hate needles. I didn’t use to, but I do now. Every needle stuck in to my chest reminds me of my first breast biopsy, and then the terrible sentinel node biopsy the day before my surgery. I so vividly remember that the last thing my breasts went through was searing pain. Isn’t that sad?

Anyway, the port came out, and so far so good. Rationality:1 Superstition:0.

Does it mean the magical thinking has passed? Not in the least. I couldn’t join a social network for people with breast cancer the other day because you had to say where your treatment was at, and all I could think was how horrible it would be if I found the cancer had spread and I had to update my status. Crazy lady, right?

I’m almost relieved that I have five years where I’m not permitted to have kids, or say it’s over, because it gives me an end date for superstition. December 24, 2017. That’s the date.

So what am I up to in the meantime? Well, I figure that if life is a game of Monopoly, I’m now out of jail and have just been dealt a Chance card. Sort of a Go directly to work, pay your mortgage, go on nice holidays, generally act like a complete yuppy and in five years you can roll the dice again Chance card. And that is A-OK with me.

Step 1 was turning 31. 30 was, to put it mildly, the lousiest year of my life. So my first act was to start 31 right. I booked a lovely house in Jervis Bay with my nearests and dearests and had four days of eating, drinking, walking on the beach (in the rain), swimming, and one very intense Pictionary game. 31 started with little pretension but much happiness, and I hope it’ll continue in the same spirit. Thanks so much to all the wonderful people who drove down over the weekend. You filled my superstitious soul to the brim with wonderful, positive, happy vibes and left little space for any cancer fears.

I hope you’re not too bored of puppy photos yet, because here are a few more from the weekend.

Lots of luck (and love) to you all.
x

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Above the equator

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Ah, computer chaos. I’m sorry if any of you recently received an annoying email directing you to a post that didn’t exist, or was just an image… Technology is not always my friend, it seems…

Anyway, it’s been a while, and in this case, no news has been good news! My excuse is that I suddenly realised some time around New Year’s that it was summer (I know… right?) and that the weather was fine, and I was fine too!

For the last six months I’ve been taking what the nurses sweetly call bird baths. Basically, I sit in the bathtub with the water up to my equator (I figure that my equator is around about my belly button) and I sort of splash around awkwardly trying to get clean while keeping the dressings on my chest dry. And there have been so many dressings on my chest.

Dressings after dressings after dressings. Dressings that not only are not waterproof, but that actually tell on me when I get them wet, so that I am guaranteed a talking to by my community nurse on her next visit. Naughty naughty.

I can definitively state that I am one of those people who wants whatever they can’t have. And what I’ve been wanting more than anything these past few months (other than hair!) is to get fully submerged in water. Getting wet above the equator. Yep, that’s been the dream!

And the weather has been simply lovely (45 degree days aside), and so I’ve been taking Saskia to the beach to teach her to swim every few days and just kind of sadly dunking my feet in, and trying to keep the bag holding the IV drugs dry while half drowning the pup (who seems to be getting the hang of it).

So you can imagine my surprise and delight when I was released from both 24/7 IV drugs and dressings on my wound all on the same day!!!

The very next morning I raced for the beach and got as submerged as I could possibly get, and stayed submerged for as long as I could before I was in danger of being rewarded with a melanoma to keep my breast cancer company.

Oh, it was bliss.

If you really want to appreciate how wonderful life is, get cancer. Think hard about the possibility of dying young. Feel like hell through three months of chemo. Lose your breasts and your self esteem. Get bald and sad and housebound. Feel ugly, washed up, useless, and then quietly mend a little. Step in to the sunshine with your fake boobs on, and a little bit of fuzz atop your head, and BAM. Feel the happiest you’ve ever felt.

Amazeballs. Truly.

I am enjoying everything right now. I’m drinking coffee again! Coffee!!! LOVE coffee!!!

I’m drinking wine again! (Yep, LOVE wine!).

Food tastes amazing, too amazing. Dangerously amazing.

People tell me the fine fuzz on my head looks A-OK too. And it feels lovely, like a baby bird.

So that’s why I haven’t been blogging. Because I’ve been out there making up for the six months that wasn’t.

I’ve walked a lot. Read a lot. Started cooking again. I even stitched some cushions.

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Boring… says Saskia. I guess I’ll dig up your garden while you’re waxing lyrical about how great everything is.

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It’s been grand, really it has.

I guess that now I need to think about getting back to work. Real life beckons.

But maybe one or two sneaky beach trips first, hey?

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Happy summer to you, all you good people below the equator. Enjoy every minute of it. And for those of you above the equator, make a snowman for me?

Fuzzy headed love to you all…

x

Resolute

With seven hours until the new year, I’m in the mood for reflection.

This has been a big year. It started in a beautiful, positive place, where I did a project that in retrospect I’m extraordinarily grateful for. In the thirty days (give or take) leading up to my thirtieth birthday, I did thirty blog posts entitled Thirty Kinds of Wonderful. The basic idea was to take the thirty things I was most grateful for, or that meant the most, and to record them for myself.

I didn’t realise at the time, but I was creating a kind of talisman for myself. When I got my breast cancer diagnosis six months later and things got tough, or sad, or lost their meaning, I would remind myself of my thirty kinds of wonderful. Thirty reasons to be strong and brave and hold my head up high, and say I will beat this.

So here I am, before the dawn of 2013, resolute.

Resolute that 2013, and the years that stretch beyond it, will be filled with happiness and health. Resolute that nothing will come between me and those I love most. Resolute that no matter what happens from here, I will greet it with honesty and bravery. And resolute that I will never take my life, family, friends and health for granted.

One thing that can be said for having cancer is that it gives you perspective. You realise what is really important and start to shed (or at least overlook) the trifles, irritations and aggravations that make up everyday life. You realise how many people are doing it tough, and to value the periods when you’re one of the lucky ones. You also realise the true meaning of family, and that family extends beyond blood ties to friends, in-laws, and workmates.

I’m deeply grateful for everyone who has stuck with me throughout this period, whether you’ve been there every single day, sent me a quirky card or gift or food (or a USB or hard drive filled with entertainment- love those…) or kept my seat at work warm and waiting for me despite my uncertain and unsteady progress.

It’s tough dealing with someone who has cancer. I’ve been in turns antisocial, angry, bitter, weepy or just plain sad (and to my credit, sometimes happy and joyful too). Poor Charlie has had to share his house and bed with three lots of surgical drains and countless IV bottles, not to mention having to adapt to living with a bald, scarred, breastless, dressing-covered girlfriend. My mother Anna has called and visited every single day and listened endlessly to my rambling and raving, not to mention cajoling me to eat and holding back her own tears to protect me. My father Jonathan has raced back and forth to countless doctors appointments, being my second set of eyes and ears for all things medical. And that’s just my immediate, local, nuclear family.

Whatever you’ve done (and that includes commenting on this blog), it’s been noted and I thank you.

I’m looking forward to getting my old life back. Working, partying, traveling and getting healthy again. I must admit I’ve enjoyed being skinny though! 51kg… I doubt I’ll ever be that weight again.

So, 2012… It’s been… real. Too real. I’m not sorry 2012 happened, but I’m hoping there won’t be another year like it for a long time yet.

So here’s to 2013. There’s still a long way to go, and I’ll see you all back here in the new year.

Lots of love, and happy happy happy new year to you all.

x

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A clean start to the new year for Saskia. And a glimpse of my soon-to-be-history bald head…

Christmas wish come true

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Every year it gets a little harder to answer when someone asks what I’d like for Christmas. I guess that’s what getting older does, every year you need a little less. Well, this year, I had no answers at all. Having cancer, and being in the midst of chemo, is one big want killer. All I could say, when anyone asked, was Have you got a time machine to take me forward by three months so I can finish chemo?

After my reaction to the Taxol, which it seems was a fully blown anaphylaxis, I was left awkwardly hanging there. My oncologist showed new depths, both of emotion and also professionalism, by taking a week to consult with her peers and weigh up all my options. It was an uncomfortable week, but an important one.

And at its end came some staggering news, which you’ll all cheer about, but I have to admit left me feeling a bit… lost?

The final decision was to end my chemo early. Three months early. My Christmas time machine had arrived. No more Taxol. No more Red Devil. No more anti nausea drugs, no more laxatives. Instead, a little white pill named Tamoxifen.

A little white pill that will be my daily companion for the next five years.

I knew that hormone therapy awaited me. That when chemo was over, that I’d be taking a little pill that blocked the estrogen receptors of all the cells travelling around my body, and that would mean that I’d need to be kept in a state of early menopause for five years. I knew it, I did, but I filed it in my bulging later folder.

And suddenly it was staring me in the face, and I was in the Survival Phase.

Another consideration pushed the decision to end the chemo. My friend the elephant. He’d made it clear that he wasn’t leaving me as long as I was on chemo. My body was… is… too weak to fight elephants right now. Taking me off chemo gives me a fighting chance to kick the cellulitis once and for all.

So, simultaneous to the arrival of the time machine, was the arrival of the Baxter Bottle. The Baxter Bottle is attached to my chest, via my port, and will be delivering me IV antibiotics 24/7 for the next six weeks. This saves me having to be in hospital (big hurrah indeed!) but means I must carry a bag or wear a bum bag (fanny pack for my American friends) at all times to hold my bottle. I have some interesting tubes hanging out of me, which draw stares when I’m in public.

But that wasn’t all that happened prior to Christmas.

We also had a call from the IVF clinic. The genetic testing on our three Judes was complete. And two out of three Judes carry the bad cancer gene.

It’s a lot to take in.

So I must apologise for my extended silence. I’ve been thinking, and reeling, and trying to readjust to having been whisked three months in to the future.

I know the news is good, provided the cancer stays away. And I know that compared to chemo, Tamoxifen should be a walk in the park. So why am I feeling like I’ve just been sent out to sea in a leaky boat?

I guess this is what happens when the future sneaks up on you. This next week or two I’ll let it all sink in, and then take stock and see where I am.

Stay with me. Merry Christmas and happy new year to you and yours…

x

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Ginger cakes for all the lovely folk at St Vincents and the Kinghorn Cancer Centre.

Totes anaphylaxic

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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.

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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

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Protector of mankind

I’m beginning to realise that this journey of mine is going to take a little longer than expected. At first, when I had a funny lump in my breast, I thought… That’s OK, it’ll take half a day to go and get the ultrasound.

And then when the lump turned out to be cancer and I met my surgeon for the first time, he said to me… You give me six months and I’ll give you the rest of your life. And I thought… Yep, six months is OK.

And then, I waited two months for the surgery. And four weeks for IVF and recovery. And then I was told I’d need six months for chemo. So… nine months… that’s OK too… I thought.

And then the cellulitis kicked in, and my breast reconstruction had to be undone, and I once again lost my left breast and then my right. And I realised that after chemo was done I’d have to take time out to heal, and then start the breast reconstruction all over again. So… one year then?

Then I really started thinking. About what happens after I finish chemo… When my reconstruction is completed for the second time. What then?

In the early stages of breast cancer, everything happens so quickly. IVF in particular was surreal, because it took me in the course of three weeks from the 30 year-old who’d filed children in the “Later” category to the cancer patient desperately fighting to freeze an embryo or two, safe out of chemo’s reach and preferably not carrying the bad cancer gene to boot. Suddenly, I theoretically had three cracks, maximum, of conceiving a child in the future with my DNA.

But then, as I was getting my most recent chemo, I realised something. Something that I guess I knew in my heart of hearts the whole time. It was a landmark chemo. My fourth AC cycle. I’d never have to see the Red Devil again. Hell, I’d never be able to see the Red Devil again. Six doses is where serious risk of coronary arrest kicks in. It marked the halfway point for chemo. A landmark of sorts.

It should have been means for celebration, but I suddenly started thinking… What then?

When this is all over, the real waiting begins. The waiting to see if the cancer will come back. The waiting to see if my body will come back out of chemo-induced menopause. Some doctors say you should wait five years before contemplating starting a family, because the implications of having a kid and the cancer coming back, it’s too horrible to contemplate.

While my peers are having babies, I’ll be waiting, waiting, waiting for some sign that things are going to be OK, long term.

And it’s sad, this change in perspective. It feels like the final thing the cancer takes away from you is your chance to plan, build and dream.

So in the midst of all the surgery, and the chemo, and the cellulitis, I decided that it was time to invest in something for the future. To stop being so fatalistic… pessimistic and say… Screw you, cancer. I’m enjoying the here and now, and you can’t get me here. This is the one place you can never get me.

So we adopted a puppy.

A big-pawed, blonde, mystery-hound, Heinz 57 Varieties sort of a puppy. And I named her Saskia, which means “Protector of mankind”. Which is expecting a lot of a creature who still can’t stand and scratch herself at the same time, but I think she’s up for the job, long-term.

And when we go out, Saskia and I, I forget that I’m skinny and pale and bald and weak, and just become a regular human being again. People don’t notice my strange hats, or at least they don’t ask, because they’re too busy patting my small(ish) golden hound.

My protector. The protector of my future. Meet Saskia. She’s delighted to meet you too.

x

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