Tagged: bilateral mastectomy

What it means when I call you family

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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.

xx

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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.

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Black and blue

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

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

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

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

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

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

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

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

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

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

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

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

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She also has a messy looking thigh.

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

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

x

Angelina is a brave woman

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.

But…

(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.

However.

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.

Ugly pug tits

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

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

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

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

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

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

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

I call them my ugly pug tits. I reply.

I was thinking sausage dog… Nurse G suggests.

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

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

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

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

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

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

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

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

Big love to you, Nurse G.

x

The elephant returns

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Much love, as always.

x

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

Oh ho, what fresh hell is this?

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

No, you must have your elephant surgically removed.

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

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

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

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

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

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

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

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

Monday was an angry day.

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

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

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

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

Whoa, still angry.

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

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

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

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

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

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

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

x

An open letter to my Bad Cancer Gene

Dear Bad Cancer Gene,

You have lurked in my genome and tortured my family for generations. You gave my grandmother breast cancer in her 30s, and again in her 80s. You gave my father prostate cancer. And now you’ve come knocking at my door.

You’ve taken away my breasts. You’ve instilled in me a deep fear of my own mortality that I doubt I’ll ever be able to shake. You’ll take away my hair and my health within weeks.

You’re forcing me, age 30, to pay $15,000* to undergo IVF when I’ve never even had the chance to conceive a child naturally. And IVF sucks, by the way.

Well, Bad Cancer Gene, the buck stops here and now.

You’ve pissed me off, and you’ve taken over my life, and I will now do everything in my power to make sure that no future generation will ever have to deal with you.

Despite massive ethical reservations, I will fork out the cash to throw every possible genetic test at my future unborn children so that they will be born free of you and the curse you bring.

I will strike down upon thee with great vengeance and furious anger those who attempt to poison and destroy my children.

And you will know I am Niccola when I lay my vengeance upon you.**

It’s on, Bad Cancer Gene. Oh, it’s on…

*Another big shout out to Medicare, who’ll give me about $7,000 back, theoretically. And by me I mean us, I’m not alone in this investment…

** Apologies Ezekiel 25:17 and Pulp Fiction.

And then it was on like Donkey Kong

No rest for the wicked, as they say.

On Thursday, one week after my surgery, I was back at the hospital for Round Two. Now that the surgery is (semi) behind me, save for two drains hanging out of my armpits and a rapidly expanding pair of breasts, it was time to talk chemo.

Shudder.

I think I mentioned before the surgery that as well as removing (and replacing) two breasts, Dr S was going to do something called a lymphodectomy. As I understand it, and prepare yourself for some seriously half-baked biology here, the lymph nodes transport debris, fluid and anything else that isn’t in the bloodstream around the body.

The way cancer spreads is through the lymph nodes. The doctors call the lymph nodes closest to the cancer the sentinel nodes, and the best way to find out if the cancer has spread to them is to cut them open and look at them under a microscope.

If they find any cancer there, they remove more nodes.

Which is what happened with me. They found some cancer cells in my first sentinel nodes so made the decision to remove all the nodes in my right armpit. This is not ideal, as if you lose all your lymph nodes from one side you can develop something called lymphedema, which is a swollen arm. Let’s hope this doesn’t happen, but if it does, well it’s still a hell of a lot better than cancer.

So anyway, now we know a whole lot more than we did before surgery. The tumour and all the nodes went off to the lab and thankfully it was confirmed that the cancer had only travelled to the first sentinel node, and the others were all clear.

Which brings us to chemo, and Prof E, the latest member of my cancer fighting squad. Prof E is an oncologist, and it’s her job to wage chemical war on my body. Prof E is a straight shooting kind of woman. She didn’t mince words, and within minutes we were very clear on a few things.

Firstly, we have a chemo plan, and it will start soon. It would be starting next week, if not for one other rather pressing issue, which I’ll get to soon.

The chemo consist of two phases, each three months in duration. The first treatment is called AC (they are abbreviations of drug names, feel free to google if you’re curious). AC is delivered through IV (drip) one day every 21 days, over four cycles. Apparently nausea and vomiting isn’t generally too much of an issue (touch wood) but fatigue is, particularly on days 4 and 5 after treatment.

Prof E also told me, almost to the day, when I’ll lose my hair (yep… as suspected), which is about two days before cycle two starts. So I guess it’s time to start thinking about getting my hair cut short so it’s not such a shock when it happens.

The second treatment phase is called T, which is delivered once every 7 days for 12 cycles. Apparently T tends to take any hair that remains, including eyelashes, eyebrows, and (ahem) everything else, which at least means hair removal won’t be necessary for a while!

It’s a lot to take in, but that’s only the superficial side effects.

The biggest risk through all of this is infertility. At some point my ovaries will just switch off, and there’s a good chance that they won’t switch back on again. Which means if we want kids, it’s time for some hasty IVF.

We’re only allowed one cycle, because the chemo needs to start and also the estrogen-heavy IVF drugs are just what my estrogen positive cancer likes to eat most.

As Prof E so aptly put it, there’s no point worrying about fertility if you’re dead, so basically there’s no use ruminating about this one. Fingers crossed we can freeze a few embryos before chemo begins, but if we can’t… Well I guess there’ll be a lot of lucky rescue greyhounds in our future…

So on Friday we started the whole fertility journey, just as a bonus. I’ve got to admit I’m all blogged out right now but I’ll update you next week on this, right now it’s just a stack more blood tests, ultrasounds etc to figure out the likelihood of a successful egg harvest. We’ll know next Friday if it’s worth giving this a shot or just going straight to chemo.

Sounds like Monopoly doesn’t it? “Go directly to chemo. Do not pass go, and do not collect $200”.

Again, a whole lot of you have sent me some really amazing emails. And I’ve been crap and not responded. My defence is that I’m really tired, and still on some heavy pain meds, and my arms hurt, and every two hours I get a call from the hospital checking if I’m ok, which makes me wonder if there should be more wailing and gnashing of teeth going on? I’ll try to write more soon…

x

The flip side of hope

For every up, there’s a down right now.

And because this is a completely straight down the line, honest portrayal of what it’s like to have cancer, I’m telling you about this side of things too.

In my case, as you’ve gathered, my rational side is pretty good at this whole cancer thing. But my dreams will tell you an entirely different story.

I promised I’d tell you about the delirium or hallucination I experienced the other night. In its case, I felt I could attribute it to coming down off the terrible cocktail of IV drugs I was on. But since I’ve had an even scarier dream since, I’ve had to come around to the fact that it’s my own fear creating these dreams, not drugs in my system.

So, the hospital dream. It had been a long, weird, sleepless night in the hospital. As I lay sleepless and it ticked towards 2am, I began to hear a scramble of noises like radio static. I opened my eyes to find my little curtained off hospital room glowing red and strange, evil creatures lurking around the frame of my hospital bed. “This is crazy”. I thought, and blinked a few times, and the room returned to normal. But then the noises returned and there was an absolute army of all the evil things from the seven layers of hell all dancing, swooping around my bed. I distinctly heard the crazy non-English speaking lady in the next cubicle say “someone light some incense!” with absolute clarity. What was reassuring throughout though, was that I never wavered on my belief that though these creatures may come, they couldn’t get me because this was my safe hospital bed.

Scary? Yes. Also weirdly Catholic/ Christian in its content. I think all the crucifixes and bibles of St Vincent’s were making an impression.

But now, last night’s dream took me to a whole new place.

In this dream, I found myself in a public bathroom, late at night, after a music festival. Strewn among papers on the ground was an old book with a few banknotes sticking out of it, which I took with a view to handing it in to the police. However as I walked away carrying the book, I ran into one of Charlie’s sisters (Hilary, to be specific). I offered to drive her home and found that an old dog of mine, whose name I had strangely forgotten (Satchmo) was following along too.

When I dropped Hil home, she showed me a room full of paintings she’d created- strange saints with faces on their kneecaps.

She went off to bed and I went to leave, calling Satchmo “Lucie” and having him trot happily behind me. The car had gone and a huge gate had locked me in.

I returned to the house and settled down to flip through the book I’d picked up, curious to explore this strange object. It was extraordinary, page on page of weird and wonderful imagery, pop-ups, gold leaf and strange insertions. But when I reached the back page, there were a series of creepy black and white images, almost like blurry scans. I heard a raspy noise, and looked up to discover that an old shop mannequin with its face wrapped in rough sacking was headed towards me.

Pinned down by fear, I remained motionless, and realised that the terrible rasping noise was emerging from me. The mannequin started to scratch me away, the sensation was of a giant fingernail scratching and peeling away at my skin and flesh.

The thing that scared me most was that periodically, it would return dormant to its place in the corner, leaving me with my flesh in ribbons, in great pain and greater fear.

I tried to rouse the mannequin and get it to finish me off, and it rose again as a giant evil pinochhio, almost sanding me away with its wooden hands, strings dangling. I looked desperately for help, tried to scream or even breathe but the only sound I could produce was the rasping noise.

In the corner was a tiny wooden puppet master, with small cut strings hanging from his hands. I begged him mentally to step in and control his creation, but he just stared on sadly.

And then I woke up, like a small child, crying and terrified, almost hysterical. It was so real, I was sure that if I went back to sleep this terrible puppet/mannequin with his sackcloth face would torture me for ever.

I pity anyone who has to get through the night terrors of cancer without someone by their side. Thankfully, of course, I had Charlie, who’d been awoken by the horrible rasping noise I was making (yes, that bit was real) and comforted me just as you would a very scared small child who can’t yet tell dreams from reality.

I’m not sure I’ll watch horror ever again, my reality is scary enough right now.

Walking will get you everywhere

I’m so happy to report that I’m writing this from the comfort of my own bed, a full 48 hours before I ever hoped I’d be here.

It turns out the big secret to getting out of hospital early is walking. Lots. Right from very beginning. I think the close family member who whispered that secret to me last week might be regretting passing it on right now.

It was pretty controversial, me leaving hospital early. Both my parents were concerned that it was too soon. (It probably is). But the plastic surgeon Dr M said I could and my ward nurses agreed. Did I mention how much I love Dr M? Anyone who can check out a bilateral mastectomy patient’s chest 24 hours after surgery then look in her eyes and say “you look absolutely beautiful” has my eternal love. Eternal.

The surgery was long, about 6-7 hours. I woke up in pain, with a lot of bruising and swelling, and four rather yucky drains hanging from my armpits. It’s hard to move when you’ve had major surgery in your chest and it has the interesting twist that the longer you lie in bed, the harder it is to get up as the swelling and fluids sort of pin you down.

Bless the nurses, within hours they’d asked if I thought I could walk to the bathroom (assisted) and as I flat out refuse to use a bedpan and have retained my dignity pretty much this far, I got straight into it.

And from there I walked. Firstly with a nurse as outrider, wheeling my IV alongside, then solo once I started refusing the IV painkillers. I did that really quickly too – both anaesthetic and morphine give me the panics an also delirium as it turns out – more on that later, I was off both within 24 hours.

Next discovery, pain is infinitely better than fear. As I see it, pain is your body healing. It’s there saying to you “be gentle, I’m working hard here just to stay afloat”. It tells you what’s going on, what is hurt and needs help. Pain is also temporary (or so I keep reassuring myself). But fear is terrible, suffocating and doesn’t have a natural end point. And the concept that fear can be a by product of high end pain meds? Well, spare me the meds.

I’m a person who walks off my problems, so walk I did, carrying my four drains and with my underpants clad ass hanging out of my gown. Underpants? Sheer bloody luxury, I couldn’t even get in to those for the first 24 hours! I figured that maybe the whole ward might be inspired by my shuffling underwear clad butt and I think they were, soon after there were lots of patients doing laps of the ward.

At the 24 hour mark, my nurses nicknamed me “little miss vital” because my vital signs were so good. I like this nickname a lot, I think it’s the best one I was ever given! As I walked I got to know some of my fellow patients and got myself a little social network, not to mention getting to know all the staff on the ward. Those guys are amazing.

Again it proves to me that pretty much everything comes down to outlook. I had a series of neighbours who came out of less serious surgery than my own, who sobbed and whined and demanded that the nurses move around their pillows and flat out refused to even sit up or press their own pain or call buttons. And they just lay there, in pain and miserable. No-one is rewarded for a victim mentality in hospital, but if you’re prepared to try, and push, you’ll have the whole ward cheering for you.

All the nurses have been training for City to Surf, and I’d joke with them that I was doing North to South right here on level 8.

I also got so many beautiful flowers (thank you, good people!) that the ward looked like David Jones Spring Flower Show and all the other patients had their bedsides covered in various gorgeous flower arrangements as well. K, the young girl I mentioned in my last post went home a few hours before me, thank goodness. In the end, Elaine, who was my oldest ward buddy (70, and in with a hernia) was wheeled off to her new ward in a cloud of flowers. I hope they stay fresh and happy for the rest of her time there.

What else can I tell you? I still have two drains in- I’m carrying them in a purple library bag that the breast cancer nurses gave me and I empty them myself at night. This whole process has helped me get over a lot of my natural squeamishness- chatting to patients will all their precious fluids flowing happily in and out of them sort of does that.

My breasts look better, although they’re still covered in dressings so I won’t confront the whole (nipple free) truth until Thursday when I see Dr M again. They’re strangely lacking in sensation (something I was warned of). If you’ve ever had local anaesthetic and given the affected area a poke you’ll know what I mean when I describe the sensation- the flesh feels like flesh, and your brain tells you “your flesh is touching your flesh” but all it feels like is a squishy fleshy rubber glove. Still following? Probably not.

There’s lots more to tell, but this post has been long enough. If you’ve been plotting a visit, or wondering why the hell I haven’t answered your email or text, bear with me. The oral pain meds I’m on leave me spaced out for a fair bit of the day and I’m also not eating much (nausea from antibiotics) so I’m not energy triple plus right now. I decided that it was family only this weekend but next week is for friends so I’ll be in touch soon.

Lots of love…
x