Has anyone else noticed that side effects lists are unrelentingly negative and depressing? I’ve been pretty much bombarded with charming sounding lists of side-effects since I first heard what my chemo treatment will involve.
Without going all Wikipedia on you, my personal favourites include (but aren’t limited to): vomiting; nausea; diarrhoea; constipation; dry mouth; over-eating; under-eating; metallic taste in mouth; hair loss; nail loss; tooth loss; mouth ulcers; (deep breath…) possibly passing chemo on to partner via shared toilet, shared bed linen, shared vomit bowl, sex, kissing; (breathe…) increased UV sensitivity, low white blood cell count, vaginal dryness, depression (Really? Can’t imagine why?), and of course my absolute favourite, menopause.
Anyway, I thought that maybe I should combat all this relentless negativity by coming up with my own more positive list of potential side effects, to be read and re-read during my darkest chemo hours.
So here we go then.
Potential (positive) side effects include:
No further need for a hair dryer.
I’m sure it won’t surprise you to hear that I’m not the kind of girl who gets her kicks out of personal grooming. Fact: I have never dried my hair to actual dryness. Reason: I worry that my life would disappear before my very eyes if I waste that much time on something that boring and useless.
No more frickin’ hair removal.
I am doing a happy dance right now. Yay yay yay yay yay yay yay!
Improved self esteem.
I know. You’re shaking your head, right? Poor sweet optimistic fool. She doesn’t honestly think her self-esteem can be improved by all this, does she?
Umm, yes, I do. I can honestly say that I have more self respect and self love now than I did three months ago, and at any other time in my life. Not only have I learned that I’m brave and strong but I’ve also had to learn to define myself without depending on my breasts and hair. Being a young(ish), not-too-ugly girl is hard. It can be almost impossible to figure out when people respect you for you, versus when they just want a cute/funny/young/attractive girl around. From here on in, you will like and respect me for me only, and I will do the same.
Enjoying the little things.
When’s the last time you actually enjoyed and were grateful for a bus trip? Or a decent night’s sleep? Or a fresh slice of bread? I can claim all of the above for the last 24-hour period. I’ve never been so happy to just experience normal everyday things that normal everyday people do in my entire life.
Realising how much you love everyone (and hearing how many people love you right back).
Not that I ever wasn’t fond of my nearests and dearests, but I’ve never felt so loving, and loved, my entire life. If you’d asked me before this all happened how many really close people I had in my life, I would’ve thought… hmm… 5? Now the figure’s more like 25.
Getting a bit of perspective.
This one’s for you, Haters, Trolls, Whingers, Boasters and Blabbers. A flu is not a tragedy. A missed deadline does not summon the five horsemen of the apocalypse. There are more important things than how muscly your thighs look after working out. I don’t actually care about your juice diet. And that trip to Thailand is not essential to your happiness. Capiche?
A fresh appreciation for comedy.
There is always time to have a laugh, and the funniest things often come from the darkest places.
For the record, I do not like the term empathy. It reminds me of Tolerance Day back in high school where all the bitchy unpleasant Type A kids skipped around to all the people they tortured the rest of the year asking “why can’t we be friends?” for extra kudos. However, what I mean by empathy is a basic understanding that most people are carrying some kind of hurt around with them. If you haven’t had something major happen to you like the death of someone close or a major illness, just don’t assume everyone’s as fortunate as you. I see a lot of people causing others unnecessary pain at the moment and this whole experience has hammered home to me the importance of giving everyone the space and respect that they deserve. You never know if someone’s hurting, and it doesn’t cost you any extra effort to treat them with kindness.
Since this is getting all preachy, I thought I’d lighten things up a bit by commenting, in passing, that I’m not so secretly a bit excited about seeing food-obsessed me turn skinny with big(ger) fake breasts and a shiny bald head. You don’t get the opportunity to try on a new body every day so I figure let’s embrace the chemo chic look while it happens!
I start chemo on Wednesday and I’m getting an IV Port put in my chest tomorrow morning so wish me well good people. Love you long time.
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…
We’re a ward of broken toys.
Everyone’s bruised and battered and disoriented and we all wander around in our own weird ways.
Some people are sweet, some angry, some sad.
I’m wearing two hospital gowns, one forward, one backward, tied like a cape. I’m carrying four drains (plastic bottles that the blood and liquid drain into) in a purple library bag, and have a half crescent satin pillow strapped under each arm.
I can’t do my hair, or even put on my own underwear. I can’t even begin to imagine what’s hiding under my dressings.
But the thing about this ward is it makes you realise you’re not alone, that there are so many people on their own difficult journeys.
The girl opposite me breaks my heart. She’s not even 18, and has been in and out of hospital these last three years.
And I realise that it’s not about the pain, it’s about the strength and bravery. These are the true people to admire.
I can honestly say I’ll never look at the world the same way again.
The thing I wasn’t prepared for with whole cancer thing was the waiting. Waiting for the biopsy, waiting for the results, waiting to meet the surgeon, waiting for the gene test, waiting for the surgery. It’s now been two months since I first went to the doctor to talk about a lump I’d found under my nipple, and still I’m waiting.
I’m currently sitting outside one of 1000 admission desks in St Vincent’s, waiting. I’m not even sure what I’m waiting for any more.
Today is my pre-admission day. It’s involved a lot of paperwork, and even more injections. I was quite excited to revisit my friends down in Nuclear Medicine this morning, but it wasn’t nearly as fun as last time. This time, I was injected four times in each breast, 8 needles in total. And it HURT. For the first time in all of this, I shed a tear. I really try not to show weakness during the various procedures, but my poor breasts have been through so much at this point!
The test was a fascinating one, however. The nuclear dye injected into my breasts then travelled to various sentinel nodes, tracing a path that the surgeons will follow tomorrow. This shows how the cancer cells could theoretically travel through the breasts and tells the surgeon which nodes to remove for biopsy. I now have numbers written all over my chest in permanent texta- I’ll get Charlie to take photos later.
I feel better about the fact that until this morning I had no idea where my ‘nodes’ were- it turns out they can be just about anywhere!
This is a steady process of letting go- letting go of my dignity, letting go of my breasts, letting go of my control.
On the weekend, being the good sculpture student that I am, Charlie and I made a plaster mould of my breasts. This was Charlie’s idea, and one that I really love. When all this is over, I’m going to get my beloved breasts cast in bronze… A dignified end for them I think.
So that’s mostly it really, waiting waiting waiting. Trying not to develop a needle phobia. Saying goodbye to my breasts. Yep, thanks for the mammories….
5 August 2012
Hello once again my lovelies,
It’s now three days until I go in to hospital and so I’m getting all my ducks in a row. Don’t you love that expression? I have this vision of there being ducks (and fluffy yellow ducklings) everywhere. It sounds almost as difficult as herding cats… which is possibly actually even more difficult than getting ready to go in to hospital.
But anyway… I digress…
I’ve decided to bite the bullet and move these “boobmails” on to a blog. I hate the thought of spamming my nearests and dearests constantly, and plus I think from here on in, there will probably be more material that can comfortably be fitted into an email. So, it’s time to pop along and sign up for email updates (scroll to the very bottom of the homepage) or alternatively just bookmark me for future reference… or just put the URL under a parental filter… whatever, really…
And before you ask… yes, I did think about calling it Tit and Kabooble, but I thought that it was over-egging it a little and worried that people might think that my blog is of the dirty variety. Which… of course… it is NOT!
Once again, for everyone who has emailed over the past week, I’m so sorry if I haven’t responded personally as yet. It is pretty overwhelming right now and sometimes email winds up at the bottom of the pile. I may be offline for a few days while I’m in hospital, so if you feel like sending some love my way, text messages are your best bet… Ditto if you’re thinking of visiting, please text first. While spontaneity sounds wonderful, I might be a bit traumatised in the first few days so it’d be great if you would check in with me via text first.
Much love, as always…
July 17 2012
In the next instalment of this highly-paced melodrama, we get to talk genetic testing and boob shopping!
Now I know what you’re thinking… “Boo to the genetic testing – I want to hear about the boob shopping!” but bear with me, I think that the genetic factor is quite interesting too.
Yesterday I met with Professor S, the resident expert on all things gene-related, and a lovely counsellor named Louise. We were there to talk about whether I qualified for a government-sponsored gene test, something which normally costs in the region of $5000. Louise drew an amazing family tree (reminiscent of Year 8 Biology, for those who remember drawing hereditary trees… or whatever they’re called) as Anna and I rattled off the plethora of exciting things my relatives and ancestors had died of over the years.
It seemed that on sheer number of cancer cases in the family alone I qualified for the gene test (well… whoopee!). Louise was there to provide counselling for what I am sure is a troubling time for many. The thing is, normally the people who come for gene testing don’t actually have cancer yet. They’re people who are worried about cancer striking, often because of a strong family history. It’s a big decision… because even if you find you have The Breast Cancer Genes (catchily named BRCA1 and BRCA2) it doesn’t mean you’ll necessarily get cancer. And plus apparently only about 10% of the people tested are found to have the gene (and many people who get breast cancer don’t have the gene). And if you do have the gene, the booby prize (ho ho) is a bilateral mastectomy, possibly with the bonus removal of your ovaries (more on that later). Personally, if it were me, and things were normal… I wouldn’t have that test.
From my perspective, by contrast, just two weeks post-breast cancer diagnosis, the genetic testing was interesting but not stressful. After all, I already know I have to lose a breast, possibly two, and possibly my ovaries to boot. So I think I surprised the counsellor with my zen reaction to the whole thing. I was pretty delighted just to be in a medical appointment where they didn’t shoot my nipple with a biopsy gun… or inject me with radioactive dye… or make me drink a litre of iodine… or cut off my breast!
So it was with a song in my heart and a spring in my step (OK, slight exaggeration) that I took my Very Expensive $5000 Genetic Testing Cardboard Box off to the blood donation guys and gave up a few more vials of the precious red stuff.
Results come in a fortnight, which is very fast by genetic testing standards. It normally would take five to six weeks.
OK, now the boob shopping. “Hooray!!!” says everyone.
This morning, Charlie and I met with Dr M the plastic surgeon. When I think plastic surgeon I imagine some greasy gel-haired snake oil salesman, dripping in gold and leering at my breasts, possibly mouthing “sweetheart, you can do so much better”. Dr M was nothing like this. Phew.
7:30am is a strange time to shop for new boobs, but we soon got into the swing of it. We talked implants. We felt implants. We talked doing two breasts versus one. He checked out my stomach and back for possible tissue harvesting. We established that I am too thin to be harvested for more than the smallest single breast reconstruction. I don’t know whether to be gratified or disappointed in myself, actually.
I am reassured that at the end of this, I might just have a very nice pair of breasts to remember it all by. The finest that the medical fraternity can offer me in fact. As to my final decision as to whether I go two breasts, or just one, you’ll just have to wait for another email to find out.
And now we wait again. We wait for the results of the gene tests. We wait to speak with Dr S again. And we wait for Dr S and Dr M to find a nice long time-slot when they can operate together.
And… oh yes, ovaries… It turns out that if I have the breast cancer genes, I may be a high risk factor for ovarian cancer as well. But fear not, even if that’s the case, I don’t need to start worrying for another ten years or so… by which point I’ll have had the opportunity to pop out a kid or two, with any luck. Strangely enough, this rates very low on my list of concerns right now.
And that, friends, is the state of the nation.
I’m sorry if I’ve been slow to answer your texts or emails, it’s been more due to a case of the flu than a case of cancer! You’ve all been so attentive that I’m beginning to feel like some D-List celebrity.
Lots of love…
July 9 2012
Hi all (again),
Fear not, this is not an epic like last time (much).
I just got home from my day of staging tests at St Vincents, and Lucie the dog whimpers nervously whenever I get too close to her which just confirms my suspicion that I’m now radioactive. Coincidentally, Lucie also appears to be one of those “cancer sniffing dogs” that tabloid TV regularly tells us about. She’s been sniffing my offending breast for some weeks now preferentially to all other body parts, so be afraid if you come to visit and she pays a part of you too much attention.
So anyway, the day started with my arm getting injected with radioactive dye. I was warned to stay away from babies and pregnant women and sent off on my way. After sending off five vials of blood for testing, I returned home to do my tax return (tax is curiously comforting right now).
Several hours later, after lunch with Charlie, I returned to St Vincents for my bone scan, which was done in an amazing giant piece of equipment named Discovery. In my limited understanding of all things technological it seemed practically identical to the now defunct Russian space station. I was duly impressed, particularly at the amazing instant skeleton renderings it produced (Carla, you would love them – I’ll see if I can get some copies for you).
After a phone call to Charlie declaring that staging tests were much more interesting and enjoyable than I’d expected, I headed off for my CT scan. This was when I discovered that my fun was to come to an end and I’d have to drink one litre of iodine solution. Nasty.
While the CT scan itself was harmless enough, the drip (also filled with radioactive dye) had an alarming side effect where (ahem) I felt like I was wetting myself when in fact I was not (huge relief there).
Staging tests over, the radioactive human pincushion returned home to the newly suspicious dog. Hopefully the green glow fades before tomorrow when I return to work.
Results Friday, unless the surgeon is delayed…
Lots of love.