Friday, September 25, 2009

Mistletoe and whine

I'm about to start a course of mistletoe to complement the yew tree I've already had. Toxic when injected directly into the bloodstream, mistletoe will be implanted under my skin to work its magic. Already taken by 60-70% of cancer patients in Europe, mistletoe treatment in Germany is covered by health insurers. Could millions of Germans be wrong?:)
Conventional medicine prides itself on the rigorous science behind its lotions and potions but I'm less convinced than ever. Docetaxel, the chemo drug I'm currently on, was originally extracted from the yew tree and yet many in the medical community scoff at the idea that the kissing tree may be beneficial in the fight against cancer. "My tree good, your tree bad" seems to sum up the debate.

This last round of Docetaxel has been much easier on my body; partly because I know more about how I respond and adjusted my anti-nausea drugs to suit, and partly because the dosage was lower. In between my first and second injections the international treatment protocol changed. Researchers now believe that pre-menopausal women need a little less of the drug. So last time I had more poison than is now thought to be necessary. Bugger.

Chemo drugs remind me of Maxwell Smart -the world's dumbest secret agent. Cruising through the corridors of my body Docetaxel just takes aim at everything: "Oops, sorry, there goes another good guy, pow,pow, dang! another one of ours is gunned down. Oh look, there's a cancer cell - zap!" Collateral damage everywhere you look.

I've asked the complementary experts why so many of their proponents are crackpots. Like God, they can't chose their followers and sometimes the disciples give their masters a bad name. Nearly every website I've visited to research the clinical efficacy of Vitamin C, mistletoe and other natural healers details the wonders of these treatments and then goes on to rail against other evils: the conspiracy of the fake moon landing, babies being ripped from their mothers wombs by the CIA in the middle of the night for lab experiments, and my personal favourite - the decline of democracy as evidenced by the election of Obama. Who are these people and how do they get their three brain cells to stay in alignment long enough to type?

The source of medicine, whether complementary or conventional is fascinating. Herceptin is stolen from innocent mice and sometimes Chinese hamsters. Given that nearly all medicine is tested on animals, what do vegetarians take for cancer? Perhaps eating all those leafy greens prevents them getting it in the first place.

I've posted a photo so you'll recognise me next time we pass in the street. If you feel the urge to kiss me, it's not just because I'm such a foxy baldy - it'll be the mistletoe.

Sunday, September 20, 2009

Warts and all

More stitches this week, more docetaxel, more herceptin, more laxatives, more anti-naus. and more proof that lego is Danish for love.

Thursday morning, bright and early Mum, P and I pootled over to Burwood Hospital to have the suspicious lesion on my back checked out. Mr Plastic Surgeon was delighted to tell me that it looks totally benign, 'common in elderly people, not usually seen in someone as young as you - we call them senile warts'.

In my old life it was really easy to catalogue the awful things that have been said to me, but these days it takes something truly morbid to even get my attention. When you're having chemo your internal radar gets recalibrated. It's hard to summons the energy to care about anything except that which really matters. Life continues as before but in shades of grey. So being told I had a senile wart? Zero impact. Being confused for Ruth Dyson? Immaterial. Compare me with Ruth Richardson for all I care.

All that has really mattered this weekend is lego. T and I have reorganised the H family lego collection and in the process have rediscovered unique skills that I don't believe get appropriate recognition. No one would think of including them on their CV and yet I think they have what modern career wankers would call 'great cross-over'.

I am the world's undisputed best piece finder. T just has to say 'I need a dark grey 12'er two high with a nobbly jubbly to plug the waga daga into' and bang! I'm there. Surely this is a marketable skill. The ability to see through the mass of plastic and quickly identify the one piece that will do the trick. T is an excellent planner. If the piece we're looking for turns out to have been a casualty of one of the many natural disasters that have befallen us, he can work out whether it's critical or not. 'Don't worry Mum, I've looked ahead, and it won't matter if we use a blue 6er three times with a yellow pole rather than a green 18'. Hire him now.

I've stayed in bed and he has piled the pieces around me and together we've lego'd our way through the weekend. Sorting the pieces into individual colour piles has been strangely calming and provides welcome distraction from the competing internal complaints of chemo.

Next week I'll find out if the other plastics man was right - senile wart or something more sinister? If it's something worse than expected, I'm not afraid. I have three new pirate ships, a Starfighter and two fire-throwing, horse-drawn carriages on my side.

Tuesday, September 15, 2009

Dear Kylie

OMG! You are so lucky - lucky, lucky, lucky - that you are receiving this letter from me. I mean, we are practically identical twins. Same height, same great teeth, same cute face, you've got a great voice, I've got a terrific voice, you got breast cancer and snap - me too! You're older than me so we can't really be twins but probably we were meant to be sisters but there was some mix-up at the hospital. My real younger sister's name is Kyla, which I'm sure you'll agree, is quite like Kylie so maybe my Mum and Dad were trying to hint at something.

Did you have to have a mastectomy? I can't see any evidence of the scar in the gorgeous photos of you on your website. How lucky, lucky, lucky are you to have your own website? Unfortunately is already taken by an Austrian reporter who looks heaps like Borat but you can look me up and see our total sisterness on

Did I mention that I'm a really good dancer as well. You're probably just a little bit sexier than me when you dance but I am very good at keeping in time and smiling a lot. I read in a women's mag - great articles - that you experienced chemo brain. Same!! The other day I said to my daughter (OMG Kymo, you're an Aunty!), "Remind me to take the ball to get pumped up at the...." and I couldn't remember the word for the place where we take the car to get petrol. It's the same word we use for the buildings on the sides and fronts of houses where people store their golf clubs and tennis rackets which leaves room for only the big car. How was I going to remember to go to that place if I couldn't remember what it was called?

Anyway, you've written a song about it already and it perfectly describes this hazy fuzz of trying to find the word - 'Can't get you out of my head' - the word is in there somewhere but I just can't get it out. See how before you were even diagnosed you were writing songs that would help me? Thanks a mill.

I heard that during your chemo you had a personal chef. That must have been really cool. I understand better than most how hard it is to stay trim during treatment. Did you put on weight? I have got really heavy. Our neighbour wolf whistled at my Mum today thinking it was me in a new white blonde wig. I bet you get quite a few wolf whistles. I guess it runs in our family. It seems rude to write to you and rub in how great my life is compared to yours but I think as we're practically sisters you'll understand that honesty is best and I hope you'll be happy for me. You see K-meister, I have 7 personal chefs. I know, I can hardly believe it myself. This week, every night, a different chef from my local community is knocking up tea for me and my family so I can get some rest during this second cycle of chemo. I am truly blessed. It's a shame that people in Paris where you live in your petit-borgeois apartmente are so French.

Another thing that proves our unbreakable bond is that we are both magnets for hot European men. I don't mean to be mean but I've probably done a bit better than you here because I am actually married. My husband C, is of Italian heritage and his name is Greek. So totally Euro just like Olivier and your new guy.

It's really sad that I didn't have a musical career like you. It hasn't seemed to work out for your other sister Dannii either. But I have been blessed to have 3 wonderful children in my life. I know that you want to have kids too, partly so your kids can say they are my kids cousins. I'm okay with that, because I think anything that helps us survivors survive is good.

OMG - great idea! Why don't you come and live here for a while and get to know my children and I could fill in for you on your latest tour. Your fans wouldn't notice if we went for dim lighting, and my children love all the small creatures of Australia.

I'm spinning around already at the thought.

Mad love, your younger twin


PS The word is garage.

Friday, September 11, 2009

For girls eyes only

The greatest injustice of chemo has been apparent this week. Strand by strand this week my hair has been coming out. Every time I absentmindedly brushed my fringe out of my eyes, bits of my fringe fell out into my hand. And yet, every morning despite some vigorous yanking, the little black buggers pointing the way to glory hung on for dear life.

Until 9.30am this morning I was fugly. Benjamin Button at his worst. Remember the old caps hairdressers used to put on us before bleaching highlights into our hair - I looked like I had one of those on with only 25 individual strands pulled through. Classy.

But then this morning I grew some balls, paid $15 for a haircut and had a number one. Shortest haircut ever both in duration and length of hair remaining.

Now I look like a monk.

Tuesday, September 08, 2009

You give me fever

By Friday I had withdrawal. Wednesday had been Herceptin in the MDU, Thursday the Portacath in DOSA and Friday was proving to be just another boring day. Trying on wigs, lunch with friends and bits and pieces of work in between. By the time I'd picked T up from school, done the groceries and prepared for tea I was feeling a little hollow. No injections, no monitoring machines, no-one fussing over me. If you're ever in the same boat and need to induce a fever that is sure to see you rushed into hospital and kept in protective isolation for the next four nights, follow this simple checklist.

1. Reflect on all your failures. My top five are: a) failed a ballet exam when I was 13. Mum, my beloved sister K and I were all in bed together when we opened the mail. We all cried. And cried. b) I wasn't the Head Girl or Dux of my high school. c) I left my run a bit late and didn't make it in the Honours program for Law. d) I've never saved more than about $500 in a savings account. e) I was the keynote speaker at a conference in Sweden. Perhaps 1/5 of the audience listened to me while the rest just chatted amongst themselves. In Swedish. Flurgen klurgen murgen skul.

Reflecting on our failures usually always induces a physiological response. My heart rate goes up. I get a sick feeling of dread in my tummy. When you're trying to manufacture a fever this is all good stuff.

2. Reflect on your most embarrassing moments. My top three are a) singing Tracy Chapman's 'Baby Can I Hold you Tonight?" at my 6th form talent quest wearing an ankle length full circle skirt. b) introducing two of my friends to each other by highlighting that they both enjoyed marijuana and waiting for the conversation to take off from there. c) running a training session for Les Mills Auckland personal trainers that started badly and got worse with ever word I spoke.

Even as I type these I get flushed, the hairs of my arms stand up and I would give anything to be able to relive those moments and make different choices. Temperature rising nicely.

3. Reflect on your biggest regrets. My top 3 are: a) I can think of 2 specific instances in my childhood when I knew I was about to be unkind and I kept on going with my hurtful words. b) I wasted way too much time in relationships with guys who just weren't that into me c) I have spent too much time talking and not enough time listening

As you think about your regrets you should really start to churn. A few tears perhaps. Shooting pains and aching joints should begin to manifest. Right about now would be a good time to take your blood pressure and temperature and visit your GP.

For chemo quaffers like me, a temperature of 38 or above means a trip to A & E, so on Friday night to stave off my CDHB withdrawal pains C rushed me in.

What fascinates me though is that if all that negativity and cataloguing of woes can influence the way we feel, and our physiology, then the converse must be true. The NLP crowd and the Tony Robbins disciples are onto something.

Brave, courageous, positive - all words that people have kindly used to describe me in the last few weeks and months. But the first two aren't true. Being brave and courageous is about acting despite fear, and of course I'm not afraid so no valour required. Positive I'll live with but I prefer optimism.

Positivists say 'don't worry, everything will be fine.' Optimists say 'everything will not necessarily be fine. But if I apply all I know and believe about my ability to overcome and tackle each new challenge with a mindset of hope, then I will give myself the best possible chance of success.' I choose everyday to adopt a mindset of hope but the last few days have tested this to its limit.

Of course I didn't induce my fever. It came courtesy of the asymptomatic pneumonia that was lurking undetected in my chest which either came from the aforementioned (w.o.t.w) old geezer, or Ish and Ian and the coughing crowds in the cafe where we had lunch. When your white blood cells get really low (as they do between day 7-10 of any chemo cycle) your body no longer fights disease and so doesn't produce any symptoms of illness to let you know you're unwell. I didn't have a cough, or runny nose, or breathlessness - nada. Just a slight spike in temperature. Normally a person has a neutraphil (white blood cell) count of around 2.0. Being neutrapenic means your count is below 0.5. With chemo this indicates that you've reached your lowest point for immunity, are at your most vulnerable but can look forward to increases every day as your white blood count improves.

When I arrived at A & E they immediately started intravenous antibiotics, took a chest xray and blood tests to check my neutraphils. The results were rushed back - 0.0. Yip, no white blood cells - at all. And so Saturday, Sunday, Monday and half of today were spent in Ward 27 in protective isolation to keep everyone else's potential nasties away from me. I was allowed out of my room to shower in a special bathroom and had to wear a mask to make this 15 metre trip down the corridor. I was on top shelf IV antibiotics. After each dose I had a blood test taken to make sure they hadn't given me too much - these drugs are toxic in high volumes. The area around my portacath, which if you remember has been in less than a week, was swollen and very bruised, the nurses woke me several times through each night to check my vitals, and by this morning I had been injected with needles 17 times since Wednesday.

I don't share this to garner sympathy but so you know that I understand that the hope mindset is sometimes hard to access. On Saturday morning when C brought the children in to see me I wept when they left. "Take me home," I pleaded. "I just want to come home." I couldn't imagine ever having the energy for the things that bring me the greatest joy. My children, singing cheesy songs badly in inappropriate clothes, watching too much golf on TV with C. It all felt too hard. The only thing that enabled me to go beyond the claustrophobic intensity of that little room was a mindset of gratitude. All around me on the ward were people far worse off than me.

Hope, gratitude - whatever it takes. And of course, the heaviness passed. It always does. And now I have another thing to add to my long, long, long list of great achievements. This is my checklist for summoning a fever of self-belief and optimism:

1. Reflect on your achievements. I have far too many to list here now :), but I'm adding 'surviving 4 nights in protective isolation'.

Notice your physiology change. Feel good hormones are released, tension decreases in your pressure zones and you start to smile.

2. Reflect on your most embarrassing moments. Stop taking yourself so seriously and laugh about the ridiculous person you were when those cringe making moments took place. Make a mental note of whether you are still alive. If you are, then these sorry sagas didn't kill you did they?

You should be standing just that little bit taller, shoulders back and ready to roll.

3. Reflect on how lucky you are compared to me. Have you ever been mistaken for Ruth Dyson?

Just after lunch today, Dr Indian Spunkyfeatures from The Far Pavilions gave me the all clear to come home. Mum drove black beauty at the breakneck speed of 50km per hour and whilst looking at the sign that says Sumner, drove me into the curb as we made a left turn. That's 2/2 for rough trips home!

You needn't worry about my hospital withdrawal though. I'm back at MDU at 9am in the morning for my third dose of weekly Herceptin. We'll try the Portacath for the first time and I'll be modelling appropriate infusion fashion. I do hope Santa takes note.

Monday, September 07, 2009

Veins for vampires

Last Thursday Mr David Lewis inserted a Portacath into the top right hand corner of my left boob (he has a more technical description of its location) and ran a tiny tube from there up under my skin to my neck where the end of tube is inserted into a big mambo vein. All the needling will soon end and this permanent sealed -under -the-surface entry plug will allow injections in and out with minimum fuss.

Mr Lewis: "I'll run the line from the port over the subclavicular bone around the neckosaurus minor and drop it back into the Kournikovical. I'll have to make an incision on your very large(well compared to the thin red line masquerading on the right) left breast that will leave a permanent scar of about three centimetres. I have two choices of where to make the incision around your neck. This is a mere nick, a bagatelle of a scalpel mark if you will. I can either use your claviconimiscus vein or..."

Me: (silently to self only) I know how this is going to end.

Mr Lewis: ...."I can go for the jugular!"

Drum roll please. How delicious is our language? Poor Mr Lewis had toothache the night before the op. and wasn't up for my lengthy exploration of whether this use was indeed from whence the expression arose. n.t.w I was delighted. The jugular indeed.

I got to have my surgery earlier than planned thanks to some old geezer having pneumonia and being sent home. C picked me up at 4.30 still a bit groggy but at least nicely satiated with roast beef sandwiches, cheese and pineapple sandwiches, 1 bran muffin and a tub of post-op yoghurt.

C is most excellent driver and has most excellent car/truck with turbo and everything. Golly, it goes fast around corners. Has most excellent doors that open very quickly when passenger arrives home and must run inside to donate to the environment, via the local wastewater plant the aforementioned (w.o.t.w) roast beef sandwiches, cheese and pineapple sandwiches, 1 bran muffin and a tub of post-op yoghurt.

'Come up what may' might have been a better song choice.

Clean, green, and filthy

C and I took P to Korea when she was 9 months old. Not as a rite of passage but scoping opportunities to expand the empire. We were guests of a potential investor who met with us several times before our trip. For most of these visits he brought an interpreter with him but occasionally he came on his own. We all smiled our way through these meetings with limited understanding of what each other was saying but it was all very polite and C and I were, as usual, professional to a fault. He, the Managing Director and me the Brand Manager/In-house legal. All very proper.

So much so, that when we arrived in Seoul it transpired that P and I had been booked the Royal Suite of our hotel and C was booked in the King's Suite next door. There was much surprise on the face of our host as he discovered that 'you are baby's mother and he is baby's father!' and that consequently we'd rather hoped to sleep in the same suite.

Korea is a big, smoggy city that is immaculately clean, and full of beautifully groomed women and neatly tucked -in men. Culture shock for us hit on return to Auckland Airport. We live in a clean, green beautiful country that is filthy and full of slobalobs mooching around in trackies and baggy sweatshirts. I was embarrassed to be home.

And embarrassed again on Wednesday, when I popped in for my second dose of Herceptin. It gets injected at the Medical Day Unit of Christchurch Hospital along with a raft of other potions, drugs, and blood products, so it's not solely a cancer treatment centre.

The unit is modern thanks to a recent refit and the staff are friendly and efficient. So far, so good. Unfortunately for me, other patients get to go there too. Imagine an oversize living room with all four walls lined with large navy blue leather lazy-boy recliners. Each chair has a coat stand contraption alongside on which the nurses hang the infusions and a small pump device that monitors the dose. When you arrive you simply choose which of the chairs you want to use that day and voila - that's your spot.

For me, this is a nightmare. It means choosing between the loonies you know and the loonies you don't. If you sit next to someone halfway normal you might have to endure their inane conversation or burping or farting or bad breath or lengthy explanations of their particular condition BUT if you decide to gamble and instead sit somewhere else leaving a seat empty beside you, the very next escaped psychonoid that arrives might just pop themselves right next door. The pressure to choose the right chair is immense.

On Wednesday I nearly sat opposite a man with straggly long white hair, missing teeth and a woolly beard. Where's my compassion? He was wearing old trackpants and a black singlet that slung low enough to reveal both nipples, saggy man boobs and a tangled mess of black and white hair growing in every possible direction. Where's my empathy? He started making life difficult for the nurse who was putting his line in. "Take it like a man" she joked. "I'm not a man, I'm just a great big baby" he replied in a pathetic attempt at falsetto. Where's my kindness?

I picked up my bag and chose the spot that was as far away from everyone else as possible. The lady reading 'Everyday with Jesus', the teenager in a terrible state (compassion restored), the 66 year old who regaled the room with stories of how 'everyone tells me I look so much younger than I am. I've just been blessed with good skin'. Good for you honey. The extra weight is helping you too. I have no beef with any of these people. Everyone is just trying to get through, but the sight of Mr Santa's-had-a-bad-decade was not only too much for me. It was way too much for the frail, immaculately groomed Korean women who was wheeled in by her daughter. Why should she, or anyone of us, have had to deal with semi-naked slob features in addition to the stress of the treatment?

This week's dose of Herceptin took only 30 minutes to infuse, after the 45 minutes of trying to find a vein. Two staff members tried it, and after 5 needles in 5 different spots - success.

Pin cushion Coburn, they call me. Portacath, here I come.

Tuesday, September 01, 2009

The write of reply

D. The solitary pen mark, black and permanently fixed in the top right hand corner of my assignment. Not the start to law school I'd imagined.

The question was apparently straightforward.

Steve was seen stealing a bicycle. The Police seek your advice on whether or not they can use the following section of the (make believe) Crimes Act to charge him:
Theft of a vehicle. It is an offence to steal a car, boat, train, motorbike, yacht or any other vehicle.
Pretty simple huh? My answer went something like this:
Duh! Of course. Yes they can. Any idiot can see that. C'mon, I hope the next assignment will be more challenging. Love from Sacha.

It turned out that we were supposed to bone on for pages and pages espousing all the possible ways of interpreting this piece of pretend legislation. Parliament's intention was to be inferred, mention of 'on the one hand' was compulsory and polysyllabic words evaluating the strengths of one interpretation weighted against another would guarantee a better grade than 'D'. As I had always been prone to do, I'd gone directly past discussion and straight to judgement.

That's why I think everyone should have to do some basic legal training. It teaches you to think. You learn how to evaluate opposing views and consider all the angles of an issue. And you learn pretty quickly how to firmly express an alternative view to the prevailing wisdom. Which is where the 'comments' part of this blog comes in. If you disagree with anything I write, you have the right of reply. Except if you're a technophobe and haven't worked out how to post a comment yet.

Every week I get emails asking for clarifications, disputing points of fact and begging for inclusion. All of these correspondents could comment anytime they wish but in the interests of balanced blogging here's a summary of their feedback:

1. J, from Auckland, who sounds suspiciously like my mother, thinks 'Song to Live by' is misleading. 'You make it seem like all you ever had were failed relationships.' Well, yes, that's because all I ever had were failed relationships. The fact I'm no longer in them is testament to their failure. 'But so many good decent men were always after you Sach.' Well, yes, but when were good and decent men attractive to bad and indecent women like me? Besides which, it's redundant to discuss my dating history. I've been going out with C for 10 years now although lately it's been more staying in.

2. J, from Auckland, who is my father has written almost daily asking for inclusion. 'Some people won't know you even have a father.' Well, yes, they will. Everyone has a dad. While I was at Hotel St. G. Dad was battling his own life-threatening illness and ended up being rushed to Auckland Hospital. His condition is associated with childhood; very rare in adults. His Peter Pan-esque approach to life is inspiring and I promise to share more stories from our many adventures together.

3. A,B,C,D are all former flatmates requesting that I out the 'Everybody Hurts' girl so suspicion can be removed from them. One wrote:
"I read your blog with the girls in my office and we all get a good laugh and even our boss has offered to do our breast exams for us and we had to tell him that jokes like that aren't funny anymore but then we remembered that you want us to laugh so we let him say it and I think one of the girls actually let him do it but I didn't because he already had at last year's Christmas party and he's not my type because he's short. Anyway, I had told hem how we used to flat together and now they all think it was me that played REM all the time but it wasn't because I wasn't even going out with anyone then, let alone breaking up with anyone then, so if you could please just write on your blog that it wasn't me they might stop singing it all the time and telling people who ring up for me that I am just off in the loo having a cry."

4. M, an old friend from my days in Dunedin is scared that his filthy comments will be removed my me. He is right to be afraid. This is a (largely) family show.

5. G,B et al have sent various reports scavenged from dubious sources disputing the links between smoking, obesity and cancer and other illnesses. I sent them back some UFO pictures, and a photo of me and Elvis taken last year.