Tagged: alopecia

Hair and now

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.

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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!

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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!

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And here I am now. Is the transformation as big to everyone else as it feels to me?

x

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Above the equator

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

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

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

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

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

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

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

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

Oh, it was bliss.

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

Amazeballs. Truly.

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

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

Food tastes amazing, too amazing. Dangerously amazing.

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

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

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

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

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It’s been grand, really it has.

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

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

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

Fuzzy headed love to you all…

x

Playing dress ups and losing eyelashes

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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.

x

Fake tit, high altitude, many hats.

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.

Much love.

x

Chemo radio silence

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.

Thank. God.

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.

Much love.

x