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.
It’s been so long since I wrote that people have been asking me if I’m all done.
I’ve been telling people that my silence has been caused by the perfect storm of work, surgeries every 5-6 weeks, and trying to arrange a renovation and a wedding at the same time.
But the truth? The reconstruction process has actually been a bit heartbreaking. And I actually didn’t feel like blogging about it.
I’m now in for round three of the fat grafting process. Round three? I told myself there wouldn’t be a round three. But then, I also told myself that I’d have great (fake) breasts at the end of it.
There have been a lot of lies floating around.
After round two, I went to see my surgeon. The plan: to say right, Sir. We are done with fat grafting. Give me my implants pronto because I want nice breasts for the wedding next March.
And his response. Sort of squirmy. Awkward.
Something along the lines of your scarring is worse than we thought. Your chest wall skin is stretched too thin to accommodate breast implants. But the good news? The “experimental” fat grafting seems to be going well and we’re confident that you can get a good A cup out of it.
Fricking A cup? A CUP???
I’ve been through this many surgeries and this much treatment and this much bullsh*t and you’re offering me an A CUP?
It was all I could do not to collapse in a blubbering heap on the surgeon’s floor.
I know I should feel lucky just to be here at all, but bloody hell, I promised myself breasts. Good breasts.
The little girl inside of me had her red balloon, her teddy bear and her lollipop wrenched off her all at once. My bottom lip quivered for two days.
An A CUP!!!
But then I did what I always do, and rationalised. And compromised. And I bought myself my first ever WonderBra (A cup!) so that maybe, just maybe after round 3 I could take my crappo little A cups and squeeze them into some pubescent notion of cleavage?
So far, by the way, I’m not filling the A cup. I’m aspiring to the A cup.
And my fake foam breasts still fool everyone into thinking everything’s OK. And now they are the carriers of false hope. When I wear them it’s like they’re mocking me. They’re saying like them? These are the fake breasts you can only dream of!
And then you know what else has been happening? Pink Fricking October. Pinktober. Shudder.
I’m here to tell you that the breast cancer community (or at least the ones I know) don’t bloody like Pinktober.
It’s not that we’re not pro fundraising or awareness. No, no. What pisses us off is that Pinktober is the month of platitudes. Where big corporates donate peanuts to a charity, turn a product pink, some idiot buys the product and everyone feels like they’re somehow saving the world. (I can see my advertising brethren backing away from me right now saying that’s our clients you’re panning. Keep your voice down, angry lady. Sorry, but it’s true. You’re helping the economy, yes. But curing breast cancer? Doubtful).
Or, worse. Some idiot decides to create some Facebook meme where women write something cryptic on their wall… Like where they put their handbag… And it’s meant to be some “all us chicks are in this together and those silly boys just don’t get it”… And I guess maybe they think some donation fairy somewhere flicks a few bucks into a research charity? Maybe?
GAAAAHHH!!! There is no donation fairy!!!
Sorry. Control the righteous indignation. Control it.
But guess what? There’s an even dumber event on the calendar. Ladies, meet No Bra Day.
Yep, you guessed it. You can forego the bra in celebration of your fabulous titties and again, that magical donation fairy will flap her shiny wings and breast cancer is cured!!!
So I’m here to tell you, oh pack of loose titted geniuses, that your no-titted post mastectomy brethren are plotting to hurt you.
Get a clue, brainiacs. Flapping your perfect love bags in our faces is not making us feel loved, or supported. It’s just rubbing in our faces what we don’t even have.
Wow, I feel so much better. This blog is way cheaper than therapy!
So, yeah, that’s where I’m at. I’m sitting in a day surgery waiting room during Pinktober dreaming of my new A cups. Someone will knock me out cold any minute now (and charge me $800 for the privilege) and maybe, just maybe, I might look a little less like a ten year old boy when I wake.
Wish me luck. And boobs.
P.S. Why the photo? These are a few of my favourite things right now. A mighty fine little skull-shaped bottle of tequila and a little Day of the Dead bride and groom, lovingly bought for me by the wonderful Mark and Kara in Santa Fe. I thought they might cut through the grumpiness of this post a little!
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.
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.
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.
A clean start to the new year for Saskia. And a glimpse of my soon-to-be-history bald head…
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.
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 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!