Songs to live by

One of my flatmates once played 'Everybody Hurts' by REM on repeat 24/7. I learnt to play Michael Bolton's "How am I supposed to live without you?" on the piano and tortured my family with tearful renditions for most of 1989. 'Black' by Pearl Jam signified the end of yet another going nowhere relationship at university; Whitney Houston's version of 'I will always love you' was presented on a cassette when my high school love decayed into nothingness, and Radiohead's 'Fake plastic trees' has alternated with Bonnie Raitt's 'I can't make you love me' for every relationship since then.

Popular music taps the rich vein of everyman in each of us that enables and empowers us to sing along as though the lyrics were the purest expression of our individual souls. "Oh, we're halfway there....." The cheesier the words, the more anthemic the melody, the more likely it is that I'll be singing along with great gusto, just waiting for the bridge into the key change before the third chorus.

When C and I got married last year I suggested the simplest of songs for the stroll down the aisle:

Come what may
I will love you until my dying day

Was it tempting fate do you think? Inviting the uncertainty of a cancer diagnosis and the challenge of treatment? Or just a song that gives voice to the plaintive cry of my heart?

I need a new song now. A popular song that we can all understand and relate to that adequately describes the abject horror of Day 5 of Docetaxel. A song that makes us weep and laugh in equal measure, has a catchy tune and fills us with hope. Here goes:

Docetaxel by Mozart and Coburn
(tune: twinkle twinkle little star)

Docetaxel you're the best
Dealing with my cancer guest
Thank you for the runny poos
Hundreds of trips to our only loo
The aches and pains are really fun
Luckily, it's just begun

Docetaxel you're my friend
When will the constipation end?
Feeling like I might explode
Anything, please, to ease the load
Sweaty palms, a new bald patch
I am really quite a catch

Docetaxel, time to talk
I can barely move or walk
Nobody will believe my scene
Years of being a drama queen
Pounding head, thump, thump, thump
thump, spew, poo, chuck, thump, thump, thump

Docetaxel, you're making me sick
Find the cancer, kill it quick
I welcome you into my house
I want to live, if nothing else
To write another song someday
All about love, come what may.

More boring 'c' facts

The natural drugs do work - I feel great. Next time you're considering chemo, get your very own appointment with Dr. Sue and see if you too will be allowed and advised to have 30+ tabs a day of the finest nature has to offer:

Supportive care 1 and 2 for Oncology Patients
Ultra Flora Immune
Meta EPA/DHA
Meta Indole-3-Carbinal
Bio Q 150

These aren't designed to kill cancer, although there's some encouraging quasi -science that says some of them might: they're to boost my immune system and they consist of massive of doses of vitmains and other goodies. The % of daily recommended vaules are astonishing:

1000% Vitamin A
500% Vitamin D
4000% Vitamin E
16,666% Vitamin B12

Add these to the new regime of anti-nausea drugs and it's getting up to 40 tabs per day. I know, it's nothing compared to what some are swallowing every day, but I'm used to spouting forth not slurping down.

Walking cliches

I've become a caricature of myself. Like every business person responsible for systems, high standards and service delivery who spends more than an hour at Christchurch Hospital, I am now ready to revolutionize the Public Health System.

So far, I've met fabulous people doing their very best to work within in a 'system' that seems to have been designed in the dark. It's early days so I'll tread very lightly but let's just say that the appointment note I plucked from the mail box today at 4.30pm advising me that chemo starts tomorrow at 10.30am doesn't meet minimum service expectations. Not because it's late notice of a change, but because I have to start steroids 24 hours before the appointment. Do the maths.

Fortunately, for me, my middle name is agitator and on Monday I made a reconnaissance (the surname I was given at birth was Bourne - spot the spy connection) and staked out the two clinics I was due to visit. After going back and forth between the Medical Day Ward and the Oncology Day Ward, heeding the recommendations about which coloured-haired receptionist to bother to direct my enquiries to, I got to the bottom of my chemo and herceptin schedule for this week. When I asked how I would have found out about the changes if I hadn't Jason'ed my way around the building I was told 'everyone gets sent appointment notices in the mail'.

N.t.w - as I write, I'm 'roided up and ready to go!

Wednesday is Docetaxel, and Thursday Herceptin. In the last week I've already had an echocardiogram and E.C.G to establish my normal heart function. If the H starts to damage my heart we'll know by comparing new tests to the baseline. I've had blood tests, been to the dentist and am awaiting an appointment to get a cancerous looking mole taken off my back by the Plastics team. My goal is to visit every hospital department I can.

I saw another walking cliche while waiting for my E.C.G. A man, 45 perhaps, in his hospital pyjamas with pants rolled up to his knees, sports shoes and shoes on when everyone else was barefoot or slippered. An orderly came to take him back to his ward in a wheelchair. "I could run there", the man protested. "It's policy," he was told. I wanted to offer him my 'IN DENIAL' tee shirt I'm planning to wear when I jog to my September tennis lessons.

And so to my most important decision for tomorrow: what to wear? Every combination I think of screams cliche.

Business suit - career bitch who brought it on herself through stress - in denial
Sloppy tracksuit - overworked mother who didn't take care of herself - her fault she got sick
Smart Les Mills gear - fitness freak who obsesses about health - in denial, ha ha
Cocktail dress - drama queen creating a fuss - stick the needle in harder and jiggle it a bit for fun
Fairy ballerina dress - someone call the psych ward!

I've never cared much for how others perceive me. I'm just not sure who I want to be. I've never had to play a chemo patient before.

From ballsy to bitter

So much time...so little to do. I have worked assiduously (w.o.t.w) through my 'tasks' and can report the following highlights from a busy week:


1) 2 more mice are goneburgered - thanks to the new plastic traps and a personal visit from the aforementioned Arkwright to provide after sales service and practical advice. I don't want everyone in Sumner to expect the same sort of attentive service but it was certainly appreciated. I am blessed to live in a village on the edge of a city. Thanks CM.


2) Mum, J, has returned from her home in Auckland with her suitcase full of retail therapy.

J: "I love this new coat Sachi, but I'm not sure about the colour. What sort of scarf do you think I could wear with it so I look better?"

S: "A balaclava"

Sometimes I surprise even myself with moments of comic brilliance but I share this for two reasons. The first is to introduce you to my Mum who is amazing, and looks stunning. No-one really understands the extent of a mother's love for her child until that love gets challenged to act. And act she has. Mum has taken short term unpaid leave from her work to be available for me. This takes special talent. I am an awful patient. I like to do everything for myself except for all the menial daily tasks that I am capable of doing, but which, just don't seem that important anymore. 'You do the dishes eh Mum?' My humour is blacker than ever and even Mum flinches from time to time.

J: "Are all those tablets you're taking helping ?"

S: "Well, my boob didn't grow back overnight if that's what you mean."

Mum also has the unfortunate job of dealing with P, who loves spending time with Mum but never remembers this. When we drove out to pick Mum up, P said "hello, Nana, when are you going back?" And yesterday during our 'what good ideas did you have today?' talk, P chipped in immediately with "my really good idea is that Nana goes home now". Tell us what you're really thinking sweetheart.


The second reason is to highlight that while I don't feel like I've changed much, I'm conscious that to everyone else I have. M, at work, pats my arm all the time. Like I'm elderly, or mentally impaired. Enough already! Whenever I say something ballsy, people look at me as though I'm bitter. Funny, ha, ha, balaclava, ha ha, isn't as funny because I'm not cute anymore ...I'm a project.



3) Retail therapy rocks. Naturally in order to complete my 'to-do' list I had to buy a few items. Briscoes, The Warehouse, Borders, Kimberleys have all benefited from my rush of activity. It's a bit like nesting. I firmly believe that if, when I first get home from chemo, the pantry is sorted, with everything in glass jars with labels, all will be well. Jacinda worked assiduously :) on Saturday night to revolutionize my pantry. My meagre contribution was to take apart all my old herb and spice packets and fill the brand new containers with lots of lovely smelling herbs, that now all smell the same to me. To this end, I need a volunteer. Anyone who can distinguish between sweet basil, oregano, thyme, rosemary, coriander, cumin and what Jac thinks might be nutmeg is welcome at La Maison D'Moi anytime.



4) My dear friends, F & G, have been supplying delicious meals full of goodness and I have taken healthy eating to new heights. Veges, fruit, whole grains, donated fish of every kind imaginable - almost no sugar, very little dairy and virtually no red meat. Of course, I'm now sick. My body has gone into some kind of anti-toxic toxic shock. Perhaps I hit the good stuff way too hard. I've got laryngitis that I've been told can only be fixed if I don't speak. C is in a state of Nirvana.

It's important that I can speak on Friday so that my oncologist can be confident that I'm ready to boff my first cocktail (fabulous expression stolen from W, my friendly village dentist) as soon as possible. I've been told that I'll be having 3 x 3 weekly cycles of Taxane, 3 x 3 weekly cycles of FEC (find every cancer), weekly Herceptin for 9 weeks and then 3 weekly after that for 12 months. I'll get a port inserted in my chest - another wee day surgery to squeeze in - for ease of drugging, and any decision on radiotherapy will be made after I've got through the chemo.

6) WOW. Watch out world. Today I tried on my first set of wigs. I've always been blessed with beauty as you know, but with a wig of luscious, fake but perfectly styled, holds it shape all day hair I am nothing short of a knock out. I asked if they had pantyhose with week-old stubble I could try. I think it's important to look as much like my old self as possible and seeing as there's only ever one day every six weeks that my legs are smooth (who has time for grooming?) I want to wear hairy tights along with a wig. Minifies didn't have tights quite like that but they did offer to pull apart their werewolf costume set so I could have stick on underarm patches. The tattooed child that served me is my new best friend. I was not brave enough to mention Merkins.

Tomorrow is 'Meeting your new oncology team' day and I'll know a lot more then about what's ahead - and when I have finished working assiduously on the rest of my pre-chemo tasks I'll let you know too.

Of mice and men

True story. No hyperbole, exaggeration, embellishment or selective recounting. First hand account of a very personal battle.

There are 47 mice running a circuit between my kitchen cupboards and my bedside cabinet. Two less than yesterday. C embraces sharing of jobs and so chucked one dead mouse out but left 'one for me' to deal with. Not many to go now.

Last night I tentatively climbed into bed at about midnight and calmly begun my now-ritualised meditation. "I am thankful for everything in my life. Especially my husband beside me breathing lightly in through his mouth and out through his nose. I am particularly grateful for sound of the tiny mouse on the other side of me (was he waiting up do you think?) nibbling away at the cheese that's in the trap that's about to slam shut and kill the bloody little bastard. I am thankful that his death will teach him not to lead his entire high school graduation class through a Durham Reel round our room for three nights in a row. I am thankful for mice in general but especially dead, silent, never to chew, gnaw or squeal ever again ever ever ever mice." You get the idea.

And so I'm lying there, semi calmly, waiting for the PING of the trap. Breathing in, breathing out, in perfect harmony with sleepy C, waiting....nibble, nibble, scratch, scratch, giggle, giggle, chortle, chortle.

And so I'm lying there, not really calm at all, allowing myself to feel just a teensy bit tense, listening and waiting....and waiting and listening...now the mouse is just messing with me "Sach" it squeaks, "you're a loser....can't catch me.....mmm, nice cheese, thanks for the peanut butter".

And so I'm not lying there anymore. I leap out of bed, pick up everything that's in cooey of the trap, and throw it all out the back door into the night. No sign of mouse. But lots of important insurance papers, P's birth certificate and one pink slipper now blowing around back garden.

Return to bed. Commotion has upset C. He is now breathing in through nose and out through mouth. Sounds like pipe band calling all available mice to find a partner for the next dance.

What does this have to do with anything? My life learnings can be seen by the steps I've taken since:

1) Bought extra traps and set them up like you might a child's train track on our bedroom floor

This indicates that sometimes in life we have the right plan but we have to increase our level of commitment. Do what you're already doing but bigger, with more conviction.

2) When I subsequently discovered that several of these traps had bait removed but hadn't PINGED, I paused and evaluated.

This indicates that sometimes in life we need to step back and see the big picture before we get too caught up in the detail.

My analysis showed - the plan is good, they like the bait, they know where to find the traps BUT my execution sucks.

This indicates that sometimes we have good ideas but we don't carry them out in an appropriate way, or with the appropriate resources. Don't ditch the ideas, just get your implementation sorted.

3) So I've called my friend and local grocer Chris Milne and left 47 messages, one for each mouse, to let him know that the traps he personally recommended are shit.

This indicates that sometimes you should spend a bit more money to get the plastic traps like you used to have before they melted when you burnt down the kitchen.

Disclaimer: Not all my learnings will apply to every situation.

4) I've got a new strategy. I am staying up all night and will use all the tools in T's spy kit to catch and kill the mice.

This indicates that I never give up. Ever. I am not too proud to ask my children for help. I am not afraid of making a fool of myself (I draw the line at the fake moustache. I'm not sure disguise is necessary, whereas the Spiderman superglue gun is an essential part of my armoury).

I am at war. It has become very personal. The mice are taking the piss. I had hoped that one of my friends might have passed on to the little furries the fact that you know, I have cancer, and right now is not a good time for me.

The risk for me, as with many who are afflicted, is that we look for signs all around us and compete in bizarre rituals in an attempt to 'trick the game'. If I complete the cryptic crossword before 10am that might indicate that today's results will be positive. Not getting a car park right outside my piano lesson is a bad sign. Plainly nonsense, but we're just trying to restore order in a world that has been tipped upside down. The mice are obviously a test. I will not fail.

Sejuice me

Happy joy today! I've begun juicing with vigour. Plastic zip locked bags (cue the high pitched whining from the greenies) with daily servings of the most nutritious organic vegetables are now stuffed in the fridge next to the carcinogens that keep my husband alive - red meat, animal fats, and beer. I have had my first freshly squeezed juice and can happily report that while not exactly delicious, it went down easily enough.

Of course, I've juiced before. But only ever combinations that evoke warm sunsets over Waikiki - watermelon, pineapples, mango with a hint of lime.

The recipe for my first vegetable cancer crusher came from my Integrative Medical expert, Dr Sue Levin. Her handout on juicing provided some light relief amongst the earnest nutritional reading material that is often confusing and universally bland.

Guidelines for Juicing

...avoid potatoes...

I'm so pleased this was pointed out. How many times a week do you crave a good old potato juice? Driving home from work after an exhausting day I bet there are people all over the country going to the fridge, overlooking the amber gold and instead searching out the finest from Oamaru, or in the poorer neighbourhoods, the very best Pukekohe can grow. "Crack another spud into the juicer would ya cobber?"

..especially with a green tint...

You think?

....as it can cause diarrhoea, vomiting and abdominal pain.

Quite. Although given that cancer causes death I might have put up with the other minor side effects.

So for my first juice I chose:

4 carrots, sprig parsley, touch of mint, handful spinach, 1 beetroot, 1 clove garlic, and the clincher - 1/4 head cabbage.

More Hokitika than Hawaii but highly recommended.

Smokin'

I don't care if you smoke. Truly. As someone who once attempted to justify the decriminalisation of bestiality I can't be accused of judgmentally obsessing about what others do with their spare time. But, if it turns out that the people who are having their first oncology appointments before me are fat, smokers there might just be another column coming on. (Google 'sacha coburn' to read what happened last time I got cross.)

The evidence around a whole bunch of cancer-causing stuff is equivocal but the link between smoking and lung, throat and mouth cancers is incontrovertible. So by all means, smoke away. I'll probably stand outside with you in the freezing cold; you usually choose to go out for a ciggie when I'm right in the middle of making a very important point:) If you get cancer I'll be kind and loving and treat you with the same caring overwhelming respect that has been lavished on me. But I won't be happy that your place in the treatment queue might mean that someone like me, or worse, a child, is waiting.

"If you're fat it's your fault." That's me paraphrasing Nigel Latta. Being overweight increases your risk of just about all cancers and almost every other disease. Do yourself a favour and reduce your weight - and my wait. Action is everything - remember?

If I sound like a moaning Minnie, I'm just warming up! In truth you'd better hope that every moaner you know never has their boob removed because once you start with the complaining there's no end of misery. Shooting arm pains, nerves in your back that scream for no reason, the feeling that your veins might stretch and pop right out of your forearm - all good stuff. My approach is to be thankful. It's a little bit Pollyanna, granted, but for every pain I have I give thanks. 'Lucky to still have an arm Sach', I think. 'Some people don't have clothes so be thankful for that nasty chaffing around your wound'.

Cl, my techno wizard at work loaded up my shuffle with post-op music. The wizardry went wonky and I ended up with just the one song to listen to in hospital. For this I was, as ever, thankful. It's cheesy and if Leonard were dead he'd be rolling in his grave. For now I think he just appreciates the money. Alexandra Burke has the voice of an angry angel.

http://www.youtube.com/watch?v=bsuXbkrA_AQ

Hallelujah. Every pain, every ache deserves its own Hallelujah. I'm alive. I'm very cool. And I'm not too fat.

Action is everything

Next week and the week after will the hardest in my 12 month fight against cancer. It seems unfair to have the major challenge right at the start but I guess if I can't get through this then I'm really not worthy.

It's tough; mentally draining and physically exhausting. Can you guess what I have to do for the next 10 days?

Nothing.

Turns out that despite the best efforts of my oncologist, the very earliest Christchurch hospital's 'system' can fit me in for my first appointment, and this is not to start treatment, is Friday 21 August. The week after that they might be able to begin the chemo. I feel like a walking time bomb. Having chemo privately doesn't make any difference. So what to do?

Action is everything. I believe this about every aspect of my life so I've made a juicy to-do list and will get on with completing it before next Friday. I will be the best prepared, most vitamin filled, read-up, fit and mentally fierce chemo patient ever - I'm reasonably confident the nurses will hate me.

The Rollercoaster of Results

It's been a week of consultations. First with Birgit to check my wound and bullet holes; and then with Chris Atkinson, my lead oncologist,to learn how many 5 year survival percentage points I lost with the latest round of results.

The bullet hole marks are from the post-op drains and are disappointingly small and normal and healing fine. My wound, so beautiful under the white strip tape is hideous with the tape removed. Think shark bite. Think of opening a can of spaghetti when the first flushes of red seep between the lid and the rim. Mmmmm.....sexy.

But, it's healing perfectly too and I am the picture of good health. Except that I have cancer. Except that possibly I don't. And here's where the results rollercoaster begins. Buckle up, if you can be bothered or just make a note in your diary to check to see if I'm alive in 5 years time.

The pathology report following surgery showed that I actually had 5 lumps. 2 were pre-cancerous and 3 were high grade invasive ductal carcinomas measuring from 1cm to 1.2cm. This is good news. A few small cancers are thought to be better than 1 larger one.

The margins around the cancers were deep - this is good news. It means the cancer has not penetrated into my chest wall. 21 non-sentinel lymph nodes were taken out. 1 had cancer in it. This is bad news. It means the cancer has spread and there is a greater risk that it might be elsewhere in my body. Only 1 had cancer in it. This is good news. It could have been present in more nodes which might indicate a more agressive cancer or one that had spread further before we caught it. Getting a sense of the rollercoaster yet?

Cancer cells sometimes have hormone receptors on them. This makes them vulnerable to particular types of treatment and indicates that they are at least trying to behave somewhat normally. Tests are carried out for two types of hormones (oestrogen and progestorone) and wouldn't you know it, my bloody cells haven't got any intention of behaving normally. They are receptor negative. This is bad news. They won't respond to hormone therapy and so this little potential remedy is off the shopping list. Advances in medicine mean that tests are also conducted now to see if HER2 receptors are present. About 20% of breast cancers have HER2 receptors. This indicates a more aggressive form of cancer. Wouldn't you know it, my cells are aggro little shits and are HER2 positive. This is bad news. It is also good news. It means that Herceptin can be used to give the bastards a good old fashioned hiding.

Loathe as I am to get all political - my voting history is as follows:

Labour for David Lange
National, Act (first MMP election)
Green, Legalise Marijuana Party (a social experiment that didn't quite pan out as I'd hoped)
Green for Rod Donald, National
National, National

Despite being mistaken for Ruth Dyson (more on that a.t.l later), I consider myself to be economically conservative and socially liberal BUT I will forever vote National if Health Minister Tony Ryall's decision to fund Herceptin for 12 months rather than the 9 weeks that Pharmac approved under the Labour government is what keeps me alive until I die.

So, the results from this week indicate that my prognosis is a bit worse than I first told you, but there are still really good odds of me being around for the rest of my life - and still absolutely nothing to worry about. Lance Armstrong was WAY WAY WAY WAY more fucked than me before he began his treatment and look at him go now. I might yet make it to the end of Nayland St on my mountain bike!

So do I still have cancer? Maybe. Maybe not. All the treatment I'll have from here on in is designed to kill any invisible cancer cells that are lurking, unknown and undetectable, in other parts of my body and to prevent the return of the original gremlins. Cancer is a numbers game.

In the very first lecture at Law School we were told that 180 places in second year would be given to the best performing students out of the 500 odd that would sit the final exams. "Too easy" I thought. "That's more than 1 in 3. I only have to be better than two total lepers and I'm in." As it turned out, I did slightly better than that and beat a whole bunch of them. Cancer survivor stats are like that.

"Of 100 women in a similar position, who have all the available treatment, x will be alive in 5 years time and have no recurrence, x will be alive with a recurrence and x will be dead from cancer related illnesses. x will be dead from other causes."

Arrogance is my problem. I'm having trouble imagining how they could ever find 100 women similar to me.

Knowing me is great for your health

Maths with Statistics wasn't my best Bursary subject. But I've developed a good head for odds. And I reckon that your chances of getting cancer just got lower because in essence I've got it for you.

I know that statistically that doesn't make sense, but surely it appeals to your logic?

If you're in the following groups you are now less likely to get cancer aren't you because it's rare that two people from a small group get diagnosed in close succession:

Ferrymead Bays Football executive committee
Mt Pleasant School Board of Trustees
Coffee Culture Head Office team
Sumner Theatre Group
Les Mills International tribe
EDUC 655
My extended family
Our bridal party

If you don't know me, but wish you did, it's too late. The logic only works if you knew me when I had two boobs.

Seeing as I've got cancer for you, would you mind having a vitamin injection for me?

Helios, the wellness centre that's a little sick

How hard can it be? The integrative health centre I visit for vitamin C injections and other complementary (certainly not free) lotions and potions has so much going for it - expert medical staff, a loyal clientele and the license to dispense laughter as the best medicine. But like so many service providers they are let down by the rotweillers masquerading as receptionists.

Last week my dear friend M, came to offer moral support at my appointment only to find that I had changed the time without telling her. The reception staff were rude, unhelpful and did nothing to exude the wellness and vitality you might expect. When M asked if they could hold onto a gift she had brought for me until my rescheduled appointment later in the day, one of them put her straight; "we are not a collection agency, I can't guarantee she'll get it, there's nowhere here to put it."

Perhaps if one of them had sat on it, it might have made her smile.

Classic example of the disconnect between the people working really hard to grow a business around core values and the people they employ to answer the phone, meet and greet, and take the money.

And why did M come to meet me?

I hate getting my vitamin injections. The place stinks of old world new-age herbs, the waiting room is full of depressed hippies and on at least three occasions the nurses have referred to my business prowess as though I've got capitalism not cancer. Their obvious belief is that working hard in the pursuit of excellence is what led to the disease.

I'm just waiting for the all-clear so I can offer my hardworking, pursuit of excellence reception training to the lovies on the front desk.