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.
So, as I keep alluding to, my fuzz is coming along great guns. It’s also being rapidly joined by eyelashes and eyebrows, to my great relief! It looks to my eyes like it’s growing in a sort of gunmetal grey colour, but I could be mistaken.
What amuses me about my fuzz is how people respond to it. In general, women claim to love it, men seldom acknowledge it, and then once in a while someone wants to pat it. This I understand completely – a fuzzy head is awfully nice to pat. I have befriended a number of (high camp) local gentleman who yell out Babe, love your hair! as I walk on by.
As to how I feel, I’m not quite sure. I’m ecstatic to have hair at all, but I can’t quite adapt to my face as it is now.
So, kitandkabooble brains trust, what do you think? Here are a series of photos – before, during and after chemo.
This photo was taken about a week into chemo by my very talented photographer friend Fi. I was miserable and nauseous, but I feel in retrospect the photo shows great strength. What long thick hair I had!
These two are photographic evidence of the wig and painted on eyebrows I wore to the very lovely Kylie and Ian’s wedding. Fun fact: that’s another wonderful friend named Fee in the photos. Love my Fionas. Thanks Kylie and the talented photographers for these photos!
And here I am now. Is the transformation as big to everyone else as it feels to me?
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.
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.
Boring… says Saskia. I guess I’ll dig up your garden while you’re waxing lyrical about how great everything is.
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?
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…
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…
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.
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!
(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.
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.
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.
Another long silence…
And where have I been?
I’ve been to London to visit the Queen.
No, not quite true.
I went to the “Great Lakes” (remember, this is Australia, people, so our “Great Lakes” perhaps aren’t quite so Great… They don’t have their own tides, anyway…) for a wedding. More on that soon.
Round three of chemo was mostly uneventful. The main thing I can gather is that every time you think you’ve got its measure, chemo trips you up and laughs in your face.
In this case, over the first weekend (days 3 and 4) I felt all very jolly and ate my way through the nausea. “Ho ho!” says I… “Ha ha!” says the chemo and socks me for days 5, 6 and 7. I believe I lived on white beans, grapefruit and peanut butter. Yummo. And then my eyelashes and eyebrows started to fall.
I wish I was the type to wish on eyelashes. I would’ve had so many wishes that I could’ve wished myself clear into May next year.
It wasn’t until I was putting on mascara before the wedding that I realised just how many of my eyelashes had jumped to their death. I’m used to having quite thick lashes and needing to treat mascara with respect and caution so that my lashes don’t turn into hairy spiders crouching on my face, but that is definitely not an issue right now.
The wedding was on the very lovely Boomerang Beach, which sits between Smiths Lake and Forster. Despite the fact that we were well into November, the wind sprung up and it was quite cold and so I decided to premiere my wig.
If our neighbours caught sight of my preparations (a very bogan family with a son named Tyson!) they would have been perturbed indeed… And possibly lynched us.
First my fake breasts went on… Then my wig… Then my contact lenses… Then I pencilled my eyebrows back in… And outlined my thinning lashes… And bronzered my cheeks to bring back a little colour… And popped a hat on my head for good measure (wouldn’t want the wig skittering off down the beach!)… And then the woman within was released.
I should really hunt down photos.
What was quite gratifying was that one ex-workmate who I hadn’t seen for a few years was entirely fooled by my charade! He was quite shocked when I told him I was entirely bald and undergoing chemo.
We had a wonderful night. Thanks so much to the talented and lovely bride and groom for putting on such a gorgeous wedding. I even danced a bit (Gangnam Style!!! My HOAC friends would’ve been impressed I think).
For a day or two I was entirely released from cancer world, and it was blissful.
But all good things must come to an end, and as our trip wound up I felt an all too familiar pain in my breast. My cellulitis had returned.
I’ve been doing a lot of “reading” recently. I say “reading” in inverted commas because it’s actually “listening”. I have a subscription to audible.com which I can’t recommend highly enough. The big advantage of audiobooks is that when you’re in pain and unable to sleep in the wee small hours, you can “read” for hours without disturbing your other half.
Well, I can’t help but notice an alarming trend in what I’m reading. First Haruki Murakami’s 1Q84 (epic) and now the Hunger Games trilogy (please don’t judge?). It seems that I’m drawn to books where people find themselves, or exist within, alternate worlds where they are trapped and must find their way out… with or without violence.
I feel the same way about the cancer, the chemo, and the cellulitis. I’m stuck in a world that I never wished to be a part of, and all I can do is slowly grope my way out as best I can. I’m out of breasts to operate on. I just have to hope that the oral antibiotics will work at long last, and that I can kick the cellulitis into next week (no… further!) without having to go back to hospital.
Keep your fingers crossed for me.
As things shift rapidly from the sublime to the ridiculous, I’m worried that I (ab)used my Lady Bracknell quote from The Importance of Being Earnest too soon.
Because… believe it or not… I am now set to get my fourth breast removed. Yep, folks, you heard it here first. My lovely breast reconstruction is soon to be entirely defunct, kaput, cactus, on the shelf, sleeping with the fishes. Pick your preferred.
And how am I? Strangely ok with it. Having now lived with my new Frankentit for almost three weeks now, we’ve reached a state of compromise. I don’t like its grouchy flat little face, but it in turn doesn’t hurt and isn’t infected and as such I can forgive it its trespasses.
Basically, I’m sick to death of being in pain, and if having an ugly flat chest for the next six months is the price I have to pay, I’ll take it.
In addition, I got my fake tit. Or tits, really. I have a light foam one for now (sort of a surgical recovery tit… It’s light and doesn’t press hard on the bruised flesh beneath). And for later I have a much more hardcore fleshy feeling stick-on tit with genuine weight, although I’m not allowed to stick it on until January when my chest wall is better healed.
It’s an expensive business buying fake tits. While the government will reimburse me $400 for each tit (maximum two, before you weirdos start having any ideas) you then have to factor in the underwear. It’s a captive audience, the mastectomy crowd. And so they slug us. A bra with little pockets for the prosthesis costs on average $80, although a bit of clever Internet shopping revealed a few cheaper sources. A swimsuit (what, flat chested people swim too?) cost me another $150. Expensive tit pockets, huh? And because you can’t wear a bra/ swimming costume 24/7 but might not want to look like an adolescent boy (or in my current case with one breast remaining I just look wildly lopsided) then there are camisoles with pockets that are a bargain $60!!! Yay! I’ll buy three!!! (true).
So in amongst all this financial bloodletting, getting the second tit off almost seems like a bargain. I might as well, I have all the kit, the prosthesis place is on speed dial anyway. Hey, I’m so organised that I’m picking up my extra tits tomorrow so when I get out of surgery my new breast awaits me. What a cozy thought!
Let’s step away from fake tits for a moment and talk about hats. Because of course, I’ve been buying a lot of those, too. All of these are very worthy things to be blowing my cash on because they enable me to leave the house but oh boy oh boy do they add up!
Our study, which is where we store our clothes, now looks like it’s inhabited by a drag queen. Fake tits, a wig on a wire head, bright scarves and oversized hats strewn everywhere… Weird. Weird weird weird.
And then we get on to the high altitude bit. I’ve mentioned before that if I walk up a teeny tiny five metre hill I find myself gulping for air like a goldfish that’s lost its tank. Well, it turned out that it was because I was incredibly anaemic. I had so few red blood cells to transport oxygen around my body it was like living at high altitude.
So the other day I had my first blood transfusion. This was a strange sensation, because for years now I’ve been on the donor end of the blood world. I was a plasma donor, as apparently that was how my B+ blood was its most useful. I had to break up with the blood bank when I found that I had cancer, because they don’t want your stinky cancer-ridden blood (they put it more politely than that). And now I’m a receiver! I suppose at least I did my bit when I could. And I hope that one day I can go back to being a donor.
Anyway, I can now say with authority that donating your blood is a wonderful gift. Whoever gave me theirs has made me feel a whole heap better. As I gulp whole lungfuls of air I think fondly of them, wherever they are. Thanks, kindly stranger!
So that pretty much covers where I’m at. I return to hospital on Tuesday (RIP Righty) and chemo happens again on Thursday, and then I’m sure you can expect some appropriately grumpy chemo related post some time after that. Chemo is a bitch.