Call it a strength or a weakness, but because of its very nature, this blog is inconsistent.
It is here so that I may record what the world looks like through my cancer lens. In the first year, pretty much everything I saw, felt and did had cancer at its core. In the second year, I slowly edged back towards a fragile sort of normality. And now at the start of my third year since my diagnosis, I can honestly say that I have gone whole weeks without feeling like I’m viewing the world through the eyes of someone who had, or still has, cancer.
I say this as a means for accounting for my long silence. It’s been a happy, busy, eventful silence. I think in this blog’s case, the silences are the periods I should be aiming for.
Right now, the thing that keeps me coming back here is my breasts. Or lack thereof, really.
When we last spoke, my surgeon had dropped the bombshell that he didn’t think that much could be done to rebuild my breasts. What was left was just bone and scar tissue. And we were trying to treat it with injections of fat to build it up and reconnect it to my blood supply as best we could, but we thought my skin was stretched too thin to allow real breasts to become a possibility.
Because I remain a staunch believer that everything is a process and that nothing is finite, I kept on going with the fat grafting.
Along the way, I had a nasty incident where my body rejected that grafted fat and I wound up on a new surgeon’s operating table just before Christmas. It sounds bad, but it was good really, because Dr Hyphenated (my name for him, not his) looked upon me with fresh eyes and told me not to give up. He is my “second opinion guy” and long may he remain so. He is a very good man.
And then in January something nice happened. The fat settled and my flesh turned from thin pale purplish grey to soft warm pink and my first surgeon Dr M looked again and said maybe we can slip a small implant in and that takes us up to pretty much now.
We’ve done it and they’re in – two smallish implants that are so far looking grand. They are much the same size as my breasts were to begin with, although more gravity-defying of course.
I am sending all the love that I can muster their way. Telling my body to nourish and accept them. It will be another two or three months before I can give a sigh of relief and say girls, you’ve survived so for the meantime I’m just trying to be good.
Take my antibiotics. Wear my hideous oversized compression bra. Don’t lift heavy things. Send love.
The last one is my own initiative, but I stand by it. Apparently if you think healing thoughts about a body part, you actually send more blood supply in that direction. Someone’s scientifically shown that. So that’s good enough for me.
Which takes me to today’s metaphor. It’s about sending love.
I know a whole lot of you have been waiting for the big wedding post. March 15 was the day. And it was pretty much perfect.
Coming up to the wedding I kept wondering what I should say. And I kept coming back to the same thought. That there are really only two times in life that all the people you love most are around you.
The other one? It’s your funeral.
In the end I couldn’t say much, I was too overwhelmed. But basically what I said and meant was that every single person who attended our wedding was now family.
I felt like, just as I am now concentrating all my love on two teardrop-shaped lumps of silicon resting under my pectoral muscle in my chest, for one beautiful evening the love of 120 people was concentrated on Charlie and I.
It was the best therapy and treatment I could ever have.
I love you all more than words can ever describe.
These incredibly gorgeous photos were taken by the extremely talented Brent Winstone who attended as a guest and could not have captured these candid and emotional moments more perfectly.
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.
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.
Is it old news to do a post responding to Angelina’s brave announcement last week?
You can imagine how many people have asked me my thoughts on this. I appreciate your interest, and I think it’s great how much dialogue Angelina’s words have sparked. I could have done without the narrow-minded, withering and smarmy responses to Angelina’s announcement that popped up periodically on Facebook, but then, the haters will always hate, won’t they?
So what do I think?
That Angelina is a brave and strong woman, and that she deserves our respect. Bringing this complicated subject in to the public eye can only be a good thing.
(There’s always a but…).
What worries me, coming at this from the less fortunate side of the bilateral mastectomy debate, is that a good news story like this can over-simplify the subject matter a little.
Just in case you’ve only recently started reading my blog, a quick refresher on my experiences thus far.
Last June, after a woefully slow diagnosis process, I was found to have an invasive ductal carcinoma underneath my right nipple. It was roughly the size of a twenty-cent coin (that’s a bit bigger than a quarter, my USA friends…). At my doctor’s advice, I underwent genetic testing, and found that I carried the BRCA2 gene mutation.
After some consideration, I decided to undergo a bilateral mastectomy – prophylactic on my left, removing the cancer on my right. I had no choice but to lose my nipples – one was already affected by the cancer, and from my perspective, any remaining breast tissue wasn’t worth the risk. I didn’t have enough spare tissue (eg a tubby tummy) for a natural tissue reconstruction, so I had the first stage of my breast reconstruction along with my initial surgery, just as Angelina did.
In the weeks following the surgery, I was really quite happy with the aesthetic result. Sure, I didn’t have nipples, but I did have rapidly expanding breasts, which was good fun. They were also gravity defying. Bonus.
Unfortunately, there were also tiny amounts of cancer found in my right lymph node. This meant that I had to start chemo before my final reconstructive surgery (the point where the expanders are replaced by silicon implants). I was assured that it was fine to keep the expanders in for the six months or so of chemo.
Sadly, it was not the case. My left breast developed a bad infection. It took months before it was correctly diagnosed as cellulitis (the bug responsible was called Pseudomonis) and by that point, the infection had also spread across my chest wall to my right breast. I was in terrible pain, and it took three additional surgeries, three week-long hospital stays, and five weeks of IV antibiotics (and the end of chemo) before the infection was finally banished.
The day they removed my left implant was absolutely heart-breaking. Ditto the day they removed my right implant. For months following I couldn’t look at my naked body in the mirror. I couldn’t bear to see the long ragged scars, the loose flab where my beautiful breasts used to be.
It’s still really hard. While I’ve now grown accustomed to my breast-less torso, at certain moments I’m suddenly abruptly reminded of how different I am from other women. I’m too scared to get a massage or a spa treatment because I don’t want to have to explain why I have no breasts. At the gym and the swimming pool, I now get changed in a toilet cubicle because I don’t want myself or anyone else feeling uncomfortable or awkward. For months I even tried hiding my scars from my own partner. It’s still many months before I can start again and embark on two more major surgeries to hopefully get my breasts back.
But what does this have to do with Angelina?
What she’s proposing avoids most of this nastiness. By having the bilateral mastectomy preventatively, you can usually keep the nipples. They go a good way towards hiding the nasty scars. And being healthy throughout the reconstruction (rather than immune suppressed while undergoing chemo) means that the chance of infection is very small.
Here’s the interesting part. When I was debating the bilateral mastectomy, I was debating it on largely aesthetic grounds. It’s human nature to view it that way. But the thing is that having a bilateral mastectomy has a much, much deeper impact than purely aesthetic.
Let’s not beat around the bush here. Mastectomy is a pretty word for what is actually an amputation. Along with the breast tissue that is scraped out from the chest area go the nerves as well.
Over the months, the nerve endings try to repair themselves. A lack of sensation turns to strange dull pins-and-needles. Sometimes it feels like two phantom breasts are hanging off my chest. The lack of sensation extends right around to the start of my back, which feels quite painful to the touch.
It’s easy to say so what, you don’t need breasts. But actually, psychologically, I say you do. Without going into gory detail, breasts form an important part of a woman’s sexual physiology. It’s in this context that I miss them the most. I actually feel like less of a woman without them.
Will having fake, reconstructed breasts help reduce this? Maybe. But it won’t bring the sensation back. Those new breasts will never be completely part of me.
Looking back on those difficult days leading up to my mastectomy, I wish that someone had told me to really feel how it was to have breasts, and to remember that feeling. But everyone was too busy telling me how great my new breasts would look.
Right now, with my ravaged flat chest, do I most want the appearance of my breasts to return? No. I want the sensation to return. I want my chest to feel like it belongs to me again. I would be interested to know whether in six months time, Angelina feels the same way.
I’m not saying bilateral mastectomies are a bad thing. They’re a life saver. And I commend any woman with the strength to go through with it, particularly prophylactically.
But I just want the dialogue to go deeper than it was three months of discomfort but then I popped out the other end with great breasts – the end.
It’s just not that simple.
And we’re doing women a disservice if we make it out to be that simple.
This is my honest opinion. Please respect it for what it is – an opinion. I don’t know if my experience is typical, good, bad, middling, but it’s worth sharing. I hope it may prove of assistance to someone making what is possibly the hardest decision of a lifetime.
All my love, as always.
Postscript: As per always, Scorchy has posted some incredibly insightful comments on this topic. Definitely worth a read.
A few months ago, I heard a track on the radio. I have to warn you, it contains expletives. But then, a lot of good things do. It’s by Robert DeLong, and it’s called Global Concepts. Here’s how it starts:
I think it burns my sense of truth
to hear me shouting at my youth
I need a way to sort it out.
After I die, I’ll re-awake,
redefine what was at stake
from the hindsight of a god.
I’ll see the people that I use,
see the substance I abuse,
the ugly places that I lived.
Did I make money? Was I proud?
Did I play my songs too loud?
Did I leave my life to chance
or did I make you f***ing dance?
So, where have I been these past five weeks? I’ve been dancing, people. And I intend to make the entire f*ing world dance along with me.
Sorry. Expletives. They’re contagious.
But anyway, what is the crazy lady talking about? Where were we?
The last time we spoke, I was sitting by a pool in Malaysia. Since then, I’ve shivered my way around Copenhagen, driven really fast around Northern Italy, and returned home to lovely sunny Sydney, just as the trees were beginning to shed their leaves.
And the whole way through our whirlwind adventure, I had this song on my head.
Did I leave my life to chance
or did I make you f***ing dance?
Did I leave my life to chance
or did I make you f***ing dance?
Did I leave my life to chance
or did I make you f***ing dance?
You get the idea.
What does it mean? It means that since I’ve had the potential of an early death flashed in front of me, I’ve been suffused with the desire to take life by the balls.
Sorry. Language again.
I realised that there have been many, many times in life, too countless to mention, where I’ve made the sensible decision. Where I’ve said well, that’d be fun… but it’s not strictly necessary now, is it?
And in Italy, in Lake Como in fact, I suddenly realised that this has to stop.
I’m not a woman of faith. I’m really not convinced there’s any life after this one. And as such it would be a bloody shame to miss out on any opportunity for enjoyment.
The upshot being, I decided, among other impulsive decisions, that I wanted to get married.
Those of you who have known me for a long time will know that I have always proudly been not the marrying type. Not being religious, it’s simply not necessary (see above). And I’ve always liked questioning social norms and expectations. And plus, I didn’t (and don’t) want to be a party to some archaic institution that discriminates against human beings who love just as truly, deeply and honestly as I do. If gays and lesbians aren’t allowed to marry under Australian law, why should I be?
So, why the change of heart then?
A thousand reasons.
In the past year, my various families (nuclear, de facto and urban) have taught me just how important family is. Charlie’s family in particular were so incredibly supportive, loving and wholehearted through my treatment that I began to question my naive assumption that one family (my nuclear one) was enough. I’ve long called myself sister-in-sin to Charlie’s siblings but just plain old sister is nicer.
My emotional baggage about my parent’s marriage was also troubling me. I knew deep in my heart that part of my lack of desire to get married stemmed from my fear that if I married, my relationship might go the same way. I also feared bringing disparate parts of my divorced family back together and opening up old wounds.
Part of the healing process for me is confronting my own demons. Accepting that my I am not my parents, and that my family’s ancient histories are not my problem or responsibility is a big step, I believe.
The other thing that’s been troubling me has been certain people’s treatment of Charlie and myself. A subset of people have long treated our relationship as somehow less worthy or genuine because of our lack of desire to get married. I even had one person ask me if we were in a holding pattern until better prospects came along. I mean… seriously?
It’s not that I’m keen to impress these people. I think their attitude is pretty reprehensible, actually. But right now I feel I need to make a definitive statement. We’ve been through a lot this past year and all the deep connections that have been forged need to be celebrated.
And finally, I want to gather all my favourite people together in one room and f*ing dance.
Last expletive. Promise.
It was absolutely wonderful.
There were sweets, and gloves, and lots of neon purchases in Copenhagen:
Lake Como was breathtaking. And life changing. And life affirming.
We stayed in a truly ridiculous spa that was once the home of a famous opera singer. We joked that we were staying in George Clooney’s boudoir.
Jazz hands in Como.
Milan, where I admitted over a 2 Euro glass of prosecco in this old Monastery that I wanted to get married.
We took in a tiny portion of the Salone (Milan Design Week).
And San Pellegrino Terme. Once a glamorous spa town, now an almost forgotten historical relic.
It was a beautiful trip, but the beautiful times didn’t end there.
It’s nice to be home.
Friends, I am writing this post with a big, fat lump in my throat and tears in my eyes.
Lisa Lynch passed away a few days ago and I am quite sure the entire breast cancer community shares my devastation. Which is, of course, nothing compared to those who knew Lisa personally. I know that for sure.
I’ve referenced Lisa on this blog before, but in a veiled tangential kind of a way. Yep, Lisa was my girl who I had such hopes for. The one who got breast cancer aged 28. The one I was looking to for guidance and reassurance, as I was trying to come to terms with being the girl with cancer. And when I read that she had incurable secondaries, I freaked out. Honestly, I’ve been in a semi media black-out ever since. However, as the months have passed, I’ve slowly opened my eyes, and my mind, to the possibility of incurable cancer.
Another incredible blogger, Scorchy, has helped me on my way with this. Scorchy, I should’ve told you months ago how much your blog has helped me. I always felt a bit shy to say so, because so far I’m one of the “lucky 80%” and I know you struggle with how the focus is on those with curable breast cancer and not the 20% who really deserve it. I didn’t feel quite worthy. And in truth, I’m also just shy. I’m a blurker. Sad but true.
And yet in a funny kind of a way, we’re in a very similar place right now. We had our initial diagnosis within a month or two of each other. We’re both back at work, and relishing the normality of it all. We’re both so, so grateful that our issues with pain are under control. We’re even on the same drug, Tamoxifen. Fun times. Scorchy never ceases to amaze and delight me with her honesty, her sarcasm and her seemingly unswayable determination. She is also a brilliant writer. She wrote a beautiful post about Lisa a few hours before mine, which I have no intention of trying to equal.
Lisa is… was… three years older than me. I can’t help but see that this could be my story. People say to me “It’s over now, right?” and I can’t even begin to articulate to them how far from the truth that is. Lisa was in my exact position after her initial treatment finished.
How is it that some people wind up as good statistics, and others as bad ones?
Don’t tell me it’s fate, or luck, or God, or science, or whatever. It just is, and it bloody sucks.
So what can you do? What can I do?
Draw strength from amazing women like Scorchy and Lisa. It sounds vampire-like, drawing strength from women with incurable breast cancer. But I do. You women are fricking incredible.
You help me believe that no matter what happens from here, you can stay strong and bright and honest and keep on loving life.
These are big concepts to come to terms with. I still can’t claim that I understand or accept the concept of death, at any point in time. But I understand the concept of living. I understand it so much more, post cancer. I’m not sure I would have reached this level of understanding any other way.
Lisa, I salute you, wherever you are.
All my love to all the brave, beautiful women out there. This one’s for you.
And the rainbow too.
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…
Ginger cakes for all the lovely folk at St Vincents and the Kinghorn Cancer Centre.
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.
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.
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.
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.
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…