How do you thank an oncologist? A love letter to all health workers.

Have you heard the news? I fought cancer and won - for now. I'll take it. But actually, I don't feel like that statement is true. I didn't do anything. Very smart, kind, compassionate people knew what to do and treated my cancer, and made it go away. They deserve all the credit, and much more besides. I'm not sure if they know how much they matter, and I don't know how to tell them, so I'm expressing it here.

My chemo port was removed today at Cabrini Hospital. It was a day procedure, no big deal - a local anaesthetic, 30 minutes on the table with some awkward pushing and prodding and the thing was done. Of course it was, that's their job. However, with the number of people in and out of these rooms, you don't expect the staff to remember you from six months ago when the same doctor and nurses put the port in. Every one of them said to me, "I remember you!". Why should they? They're very busy people, but they take an interest and congratulated me on the successful completion of my treatment, wished me happy birthday for next week, and threatened to crash my husband's birthday party (which they would be most welcome to do!). They kept me talking so I didn't have to visualise the cut in my upper chest, the fishing around in there for the plastic contraption, the extraction of the tube from my vena cava, or the stitching up that followed. There was the ceremonial binning of the said power port, after allowing me a curious/fascinated inspection of the foreign body that has been lodged inside me for 7 months. And that was just the imaging staff, who I only saw twice. When you're freaking out a little bit, you really appreciate the sensible, rational and compassionate people who keep you tethered, no matter how tenuously, to reality.

I have been extremely fortunate to have a huge number of excellent health professionals taking care of me over the past year. In fact, I have had only one doctor who I felt let me down, and given the overwhelming number of carers who didn't, the stark comparison makes me value them even more.

I have vivid memories, despite a drugged haze, of two nurses who looked after me in the high dependency unit at Cabrini. This was straight after emergency surgery, general anesthesia and the most serious suggestion that what was wrong with me could be cancer. Panic, fear, anxiety, dread - you might think that these are just different words for the same emotional state, but when you're fresh out of an operating room with the "C" word hanging over your head like the Sword of Damocles, you know that they're different, and you're feeling each one keenly, like visceral, physical wounds. And despite all the people in your life who you know care about you, love you and support you, you're feeling so, so alone. Enter two fantastic nurses, one who gave me my first consumable in a week (the best apple juice I have ever tasted) and provided me with reassurance and kindness at every turn. The other sat with me while my surgeon told me it was cancer, and remained by me when I broke the news to my mum. She also followed up and visited me later in the ward, which she was by no means obligated to do. You can't fathom how important she was to me and I can't write it, because I get so overcome with emotion at the thought of it.

My stomal therapy nurse was pivotal to my ability to cope with my change in circumstances. Having a stoma is a very confronting experience, especially considering that my previous opinion of such a situation was pure horrified revulsion. Actually being thrown into the reality of the device created conflicting feelings: the willingness to regain control of the situation and the desperate desire to flee from it. Rebecca smoothed the way. She made it seem a matter of simple necessity, which of course is exactly what it was and is. The alternative, i.e. not being treated surgically, was a non-option. She used a mix of gentle humour and practicality, and made it all seem a bit more manageable.

I sent thankyou cards to both my surgeons after the liver and colon surgeries. I'm not sure whether that is the done thing, but I didn't know what else to do. First born child? No, I'd definitely keep that for myself. A bottle of wine seems just completely stupid in the scheme of things, so I just wrote, like I write here, to try and express my thanks. I hope my carefully selected words and agonisingly crafted sentences got the message through. I put my trust in them completely, and was not let down. How do you say thank you for being so committed that you went to school for a hundred years to learn everything you needed to know to fix my insides? There actually aren't words.

And then there are the chemo nurses. I miss them. Bright, bubbly, interested, focussed on life and living, not weighed down by the drudgery of delivering chemotherapy over and over again to a seemingly growing number of patients. Assisting us with the management of side effects, devices and implants, hair loss for those affected and all the rollercoaster emotions that accompany treatment. They displayed everything from a sterling sense of humour to the utmost in professional competence. They have not ceased to amaze me. They feel like family.

Then there's my oncologist. He prescribed and tweaked, listened and explained, monitored and communicated, and ultimately delivered me back to myself in the end. Cancer free. How does one even conceptualise the level of gratitude owed to a doctor like this? I'm completely lost on this one. It is a short paragraph because there simply is no language available for this.

This may well be my final blog. So to all healthcare professionals: nurses on the wards, in the theatres and behind the scenes, physiotherapists in the hospital and in their professional suites, my oncologist, colorectal surgeon, liver surgeon, outstanding GP and gastroenterologist, physicians, ENT (the second one, definitely not the first), haematologist, anaesthetists, radiologists and -ographers, ambulance officers, orderlies and admin staff. Your job is to care, and you deliver in spades. If you work in the health industry and you are reading this, please accept my deepest gratitude on behalf of all your patients. You can have my first born puppy.

Impatient Outpatient

My gluteus maximus aren't. They have been gluteus minimus for about eight or nine months, as I lost my butt muscles along with many other muscles in the course of my illnesses. I used to have a little junk in my trunk, a comfortable booty, and it just went away. Disappeared. There will be some who wonder why I should be upset about losing weight from this notoriously difficult area of the female shape, but the issue has become connected to my sense of my own health. You need something to fill your jeans, and the derrière does the job. It makes you look well to have a bit of meat on your bones. My jeans are unfilled and if my clothes fit, which many don't, they look strange. This issue of my lack of badonkadonk has paradoxically come to the fore recently. I have found it strange that as I begin my rehabilitation with a range of activities and exercises, it's my butt muscles that hurt the most. How about that.

There's a lot more to rehabilitation than first meets the eye. That doesn't mean you can check out my posterior.

Rocky was damn lucky to have a time lapsing film montage to short-cut his comebacks. All that bloody hard work got done in the time it took to play "Gonna Fly Now". From ruins to rewards in 4 minutes 49 seconds (probably edited down in the movie, I've never actually seen a whole Rocky movie, so I'm no expert. But I have seen the montages). Anyway, the reality is vastly different as any sensible person knows, whether they like Rocky or not (and in any case you've gotta love the soundtrack).

The most obvious part of rehabilitation is the physical aspect. I have a long road ahead of me before I get back to normal. T. S. Eliot wrote:

We shall not cease from exploration

And the end of all our exploring

will be to arrive where we started

and know the place for the first time.

(Four Quartets)

I feel all my exploring of late has been off the beaten track, and I have wandered far from the person I used to be, particularly in a physical sense. The changes wrought on my body are visible as well as hidden, but the most apparent and important right now are my lack of strength, endurance, stamina. Very subtle shifts in the current that occurred over time left me marooned on a far shore, where physical activity can only be tolerated either in very short bursts or with low intensity. This bars access to many of the things I love to do, and miss doing: gardening, walking my dog, teaching, to name a few. I have begun a particular rehabilitation program, which is great for the physical but not so great on the mental and emotional side yet. I tune into channel 31 at 8:30am from Monday to Friday, and do Exercise for Oldies. Actually, it’s called ‘Move It or Lose It’, and provides low impact exercise for elderly people. It's filmed in retirement villages throughout Melbourne and is backed by the Arthritis Foundation. I am so impatient to rehabilitate myself, and navigate back to something like the strength of the person I once was, perhaps even stronger, that I am willing to endure the embarrassment of following Hilda from Whacky-Doo Retirement Village as she does armchair aerobics to a soundtrack of "Oh I Do Like to be Beside the Seaside" and "It's a Long Way to Tipperary" (I kid you not. Need to get "Gonna Fly Now" on repeat on the iPod I think). And when I do, finally, reach a level of fitness and strength that is comparable to what I had before, it will be like knowing that place for the first time, having an appreciation of it that forbids taking it for granted ever again. And, no more Hilda.

There are other aspects of rehabilitation. Mental, emotional, financial. Yes, money is part of my rehabilitation, or at least it will be. It's tough losing an income for a year or more. Fortunately for us, the impact has been more about my guilt and sense of responsibility about not contributing, rather than slipping into the red. Our team had a five year plan and drafted a conservative money manager back in '06, one who likes to keep his finger on the pulse (purse) and keep something aside for a rainy day. Monsoon season will be over soon, right? But being able to contribute to the team’s funds is important...mentally.

Which is next. The mental part of rehab. You know how it is. It's the test. THE BIG TEST. The test of whether you are going to go screamingly, stark-raving, naked, nutso, gibbering, slobbering, singing-songs-by-Bucks-Fizz-and-Racey, teeth-gnashingly mad. Or preferably not. But coming sooooooo close every day. Anyone who has ever had to work their way back into health after sports injury, work injury, run of the mill injury, self inflicted stupidity injury, crap cancer illnesses and other sneaky maladies knows what it's like. Impatient? Me? VERY. It's been over a year for god’s sake. Life - let me at it already! Mental? Yes I am!

Thankfully, with added golden glimmers and heavenly blessings, the emotional side of rehab is not actually the problem this time (apart from the low grade mortification that occurs when doing Hilda's armchair aerobics). Hope, enthusiasm, anticipation, motivation, self esteem, participation, independence, and a healthy rush of endorphins are both the carrot and the stick in getting this rehab donkey moving. If these emotions were absent, then rehabilitation would be hell on earth. Which it can be for some people I grant you. But the upside is the biggest you'll ever get. I mean EVER. I'm talking about being healthy and staying that way. HUGE.

So for me it's just another longish term slog to get through, a new mountain to climb, another exploration, but a much more pleasurable one with a much better view than chemotherapy or surgery. Or bed rest. Slowly, and in increments, my butt will get bigger. My jeans will get filled and my clothes start to fit again. Every arm rotation, wrist flex and leg stretch I do with Hilda will get me closer to being me again.

Gonna fly now.

It does not matter how slowly you go so long as you do not stop.

Confucius

Chinese philosopher & reformer (551 BC - 479 BC)




Disclaimer: I already admitted that I haven't seen any of the Rocky movies all the way through. So if I got stuff wrong, kiss my badonkadonk. At least I quoted T.S. Eliot.

Getting Some Retro-Perspective

My name is Allison Oliphant Duncan. Before you laugh, allow me to tell you that all my names come from somewhere in my family tree. I have always known being an 'Oliphant Duncan' was distinctive and somehow a bit special. When all your siblings share your middle name, and your father does, and his father did, and his grandfather did, you start to think there's something a bit cool about being connected - all the way back to when Alexander Duncan married Catherine Oliphant in Glasgow in 1818.

While I have been away from work these past months, I have been doing some work on a project with my mum, sister and brother. This project has tested my mother's IT skills (she failed, and handed her laptop over to my sister), and has given me something to work on that wasn't set to a deadline and had no particular outcome in mind. I could leave it alone when I felt unwell. It has driven us down cul-de-sacs, tied us in knots, forced us to chase red herrings and at times caused us to question our sanity. It is our family tree.

The confusion is largely due to people being named after their father's father or their mother's father, or their mother or their mother's mother. It's a complete bugger getting the generations straight. But when you get presented with a name that may or may not be part of your family, admittedly you can judge its likelihood by knowing if it's a George (dad's side) or an Elizabeth (mum's side). There are lots of repeated names. You can add mine to the list, as I recently discovered.

The Oliphant Duncans arrived in Australia via my great great grandfather, George Oliphant Duncan (‘the first'. As alluded to in the previous paragraph, there were a number of namesakes, one of whom skipped out on his family. Baa - one black sheep found.) Geo. the first was born to Alexander and Catherine, and arrived in Tasmania in around 1838 to become Superintendent of Convict Labour at Port Arthur for 6 years. Yeah, we were the lawful kind of settlers. Says a lot about our whole goody-two-shoes family line, to my mind. So he was the first of the Oliphant Duncans, and the name has been passed down almost faithfully, only skipping one generation (rebels - woo hoo).

Looking over the family tree, both paternal and maternal, I can clearly see my siblings names - plenty of Elizabeths, two Susannahs, and lots of Jameses. However it was unclear where my name came from. Unperturbed (and happy for the time being, to be unique) I nevertheless asked my mother why I was so named - including the Scottish spelling with two 'l's. Her response was unforgettable: "Um, I can't remember. I'll ask your father". But she did better than that, she found not only the details of the person whose name was plucked from the annals of history, she found a photo and an "In memoriam" card. My surname and middle name come from my father's family, but my first name comes from my great great aunt on my mother's side, Elizabeth Jane Allison Cook, who was named for her mother, my great great great grandmother, Elizabeth Jane Allison (surname Allison). You see what I mean about these blasted Scottish naming conventions.

So here I am, Ally Olly, AOD. It could have been quite different: my dad is POD, my sister was SOD, and old Georgy (all of them) were GOD. I love that I have a great aunty 'Birdy' who escaped the Oliphant but was named Blanche Ida Rose Duncan - B.I.R.D. These are probably all pretty tame compared to what's out there nowadays.

But all this research has got me thinking, not just about names, but about all the lives we know so very little about. You all know what's been happening in my life recently, and this week is special, being my final chemotherapy treatment. I find I’m feeling a little celebratory, a little thankful, a little reverent, and a little retrospective. Because my forebears went through shit too.

My great grandfather Thomas James Balmer served in WWI in the 4th Australian Light Horse. He served in Egypt defending the Suez Canal, but spent a lot of time in and out of army hospitals with malaria. He died in his forties as a result of his illnesses during the war. So my paternal grandma was eighteen when she lost her father.

My maternal grandma was ten when she lost her mother. Despite her mother being in and out of hospital, grandma had very happy memories of her. Not so much for her father (and she wouldn't like me telling you this) who was usually gambling at the racetrack, and who sent her away from her brothers to be raised by aunts she didn't like. All because he had a barny with one of her mum's sisters.

There are instances all over our family tree where children didn't survive infancy. It was common for the times, and we tend to gloss over those things these days, as if it never happens. But it still does, even if less often, and so does miscarriage. I had all the technological help available but lost a baby. As my ancestors did before me. It totally sucks, and they would have grieved too.

I have a photo of Elizabeth Jane Allison Cook, whose fore-surname my parents pinched. Her looks are most unfortunate. At first we thought she had a harelip but it turned out to be a shadow in the photography. Lucky for her, as she didn't have much to start with. She had what has been variously named "the Cook nose" or "the Lander nose" and a spongy face. I'm being too unkind, but honestly, when you've got someone's name you have high hopes for them in all sorts of ways. Were they attractive, successful, a real character, much loved? Things we hope others will think of us. I was very chastened, and saddened, to discover Elizabeth Jane Allison Cook died in childbirth at the age of 28. She had been married for only a little over a year.

There are tragedies, large and small, that occur in not only everyone's family tree, but everyone's lives. My fortunes are on the upswing, and although the past 12 months have presented one horror after another, I know I am still very fortunate. Fortunate enough to live in a time when small tragedies like dinging your car or losing your phone can now be classed as "first world problems", because they get juxtaposed against refugees - children - being sent to jail-like conditions in Malaysia. Fortunate enough that although miscarriage is hard, many, many others have experienced it, so you are not alone. Fortunate enough that when you're confined to your home you can still shop online (you can't comprehend the brilliance and empowering nature of that until you are either ill or disabled.) Fortunate that not only can cancer be identified sooner, and for what it is, it can also be treated swiftly and successfully. And fortunate enough that we can reach friends and family in seconds via phone, text or internet, in minutes by car, bus or train, or in hours by air. I love my family, past and present, because they make me thankful for everything I've got. They give me perspective.

I had the blues because I had no shoes

until upon the street, I met a man who had no feet. 

~Denis Waitely

Anticipation

Lately I've been living in the present so much that I haven't given much thought to anything ahead of me - in fact I've practically made a rule of it... but for one exception. Our family is travelling to Cairns this October to celebrate mum and dad's milestone birthdays, and I have been looking forward to it like crazy. It's the only thing I have had that 'Christmas' feeling about lately, you know, the excitement that Christmas is coming, and no matter what happens it's going to be great because you're a kid and that's what Christmas is like. My excitement now, however, is different to a normal holiday. I haven't worked for nearly a year, so it's not like this holiday is an escape from normal working life, to recuperate from the stresses and workloads associated with a career, long working hours, and heavy responsibilities. It's more an escape from my current life.

My anticipation of this upcoming holiday was heightened when I recently bought some bathers that hide my new set of grievances with my body, which replaced the old ones. Old grievances included white skin, thighs that wobbled and hips that just didn't look right. Bah. That was nothing. New grievances have been covered elsewhere in this blog, but are far more significant to my way of thinking: ileostomy, chemo port, big scars and a shrunken frame that wobbles now because it's mostly skin and low on muscle. But my new bathers miraculously hide/distract from all of that and make me feel amazing. Bring on the sunshine and poolside lounging!

I have been picturing all sorts of things I'm going to be doing on this holiday "because I might be better by then". By that I mean I may be able to walk without a stick, may be able to walk further than a few hundred metres without stopping for a rest, may be able balance better and be physically equipped to plan more than one outing or activity per day, and even do things on consecutive days without scheduling a rest day in between. That would be better than I am now.

But amazingly, this week I have been dancing. In the kitchen, the lounge room and the bathroom. I have to keep both feet grounded so I don't fall over, but the hips and upper body just go for it: the milkshake, the sprinkler, parts of the hustle, whatever. I'm just making it up. But I am dancing.  The bathroom is well heated, so on Tuesday, chemo day, I danced in the bathroom in my bra and undies. I DID NOT CARE what my body looked like. I was in Boogie Wonderland. Kool and the Gang, The Trammps, Gloria Gaynor, Wild Cherry and Lipps Inc were partly to blame (if you were born after 1990 you may have to look them up) but the dancing came about for one specific reason, a new feeling of anticipation, something else that has stealthily crept up on me. Chemo is nearly finished. NEARLY FINISHED I tell you. And I only just realised.

I'm not sure why it took my eleventh treatment to make me look forward to the last one, but it's like I couldn't see it until it was almost upon me. During chemo you're so focused on getting through the days and weeks, tracking the side effects, planning activities and outings for what might be “good days” and cautiously factoring-in rest days, updating prescriptions and ensuring all supplies are on hand, like ten back up boxes of tissues for the daily blood noses, and cranberry juice to keep the digestive tract sorted. You don't look much further than the day you're dealing with, chemo week or non chemo week.

So when Tuesday came around this week it dawned on me: after this, there's one to go. I will be free of the week on/week off mentality. Instead of expecting to get knocked down every fortnight, I can expect to slowly and steadily improve in strength and health and energy and capability, can’t I? OMG. How good would that be??? I could work. I could garden. I could eventually walk my dog. AWESOME!!

Of course, in reality, the end of chemo has been in the furthest reaches of my mind, on a distant horizon for some time, as I'm always anxious to get back to work in particular, activity in general and living properly like I used to. I've had to exercise all kinds of patience over the past 11 months and readjust my expectations at every turn. I can't just assume I'll be better in the snap of thumb and finger, I will have to pace myself. But still, I can be happy about the end of chemo can't I??

My oncologist says yes.

So you can join me in the final countdown. In fourteen days I will undergo my last disconnection from chemotherapy, portable and stationary.

My journey from patient cancer patient to cancer disco dancer will be complete.

Face to Facebook

People of my generation, and those who came before us, are not digital natives. My contemporaries and I were lucky enough to grow up with some emerging technologies but with nothing like the access of today's primary and secondary school students. We grew up in the times of Beta and VHS recorders and the accompanying debate that still rages (I guess today's equivalents would be Microsoft v Apple, Facebook v MySpace, XBox v Playstation v Wii, iPod v MP3 etc, but boffins will correct me). I remember being thrilled to get a Pacman game one Christmas, but the joystick broke and I lost interest. Our main commerce was swap cards, and our best pastimes elastics, skipping, kick to kick and turning cartwheels on the oval, until we got a bit older. Space Invaders at the fish and chip shop didn't hold much interest for me, but I know it did for others.

Kids are switched on in this digital age. They were born with technology, and know no different. Many probably had cameras and video equipment thrust in their faces before their bottom was even slapped by the doctor (I really don't think they do that anymore, but I'm showing my age and in-depth knowledge of vintage clichés). Kids all know how to snap a photo on mum's phone and whatever you do, don't stand in the way of a 6-year-old and Angry Birds. Today's kids are known in educational circles as digital natives. They have had it all their lives. But more so than generations before us, it is my generation that is expected to be fully conversant in the use of technology. Technological skills are considered a bonus for our parents, but our age group bears the weight of this expectation. We had to adapt to the technology as it was happening, especially when typing electives at school became "word processing" on Apple Macs with Mrs Tuckett in Year 9. Before that we all got high on the smell of the purple Gestetner ink from teachers ‘running off’ copies of worksheets with a crank handle. When we started using computers, choosing a font was no choice at all and "computer paper" used to have perforated sections and grabby holes on the sides. Phones were not yet mobile so you had to ring people at home and risk talking to their parents, or worse, their siblings who would rib you mercilessly if you were ringing someone of the opposite gender. Today’s teenagers can 'poke' their crush on the net without running the gauntlet of parents and siblings. To trot out another cliché, “in our day” flirting used to occur when you were in the company of the person you wanted to flirt with. And you had to have the guts to bully someone face to face or at least behind their back, not via text. Tough times.

I feel like I’m on Grumpy Old Women. Bear with me.

My generation is now at or about 40, and living in a world ruled by email, SMS, iPhones, iPads, Facebook, MySpace (really? Anyone use it?), Twitter (guilty), RSS Feeds, YouTube (sick leave would be really dull without it), Android, blogs, vlogs, avatars, digital photos, profiles and profile pictures, downloaded movies and high definition TV. And we're doing really well at it. At least we think so.

Then you see a 4 year old on an iPad and you think, how the f@!& did they do that? That's the difference.

In spite of that, we push on with our revolutionised communication modes, and justify keeping our friends and families at arm's length whilst remaining connected. We're basically insecure. And busy. In my opinion.

Despite being an ICT (Information and Communication Technology) advocate and erstwhile leader at my school, I am not an early adopter of new technologies. I like the hype to die down before I get on board, and even then I am critical and analytical in my approach to technology, at the same time as enjoying its benefits on a daily basis. I think this comes from my previous career working for Optus when mobile phones were a burgeoning commodity and the analogue network was still a viable choice. I was there when text messaging started, we could suddenly email each other and the Internet became a real entity. Just a couple of years before, I had written LETTERS home from overseas. By hand! I bought stamps and everything. Everyone did. It was 1993. But technology changed and so did we. But at Optus I was slow to see where it was all going, and surprised to be a part of it.

I have slowly built up my limited expertise in ICT in an almost accidental fashion. I was put in charge of leading the implementation of interactive whiteboards at school when someone else dropped out, and things just exploded from there. Because it's not about the technology, that's just the tool. And it's not about the software or the internet, that's just a means to an end. It's about what you do with it, and that's where the possibilities are limitless.

I avoided the whole “Facebook” aspect of the internet for a long time. I had this feeling it was self-absorbed, self-aggrandising rubbish, and I wasn't wrong, I just enjoy it now. I believed it was a stage allowing people to perform and be exhibitionists, where nothing real or substantial could occur. The thing is, and this is where I repeat myself, it depends on what you do with it.

Connection.

Interaction.

Communication.

Hit the 'Share' button and you do just that: share. Obvious isn't it? But really look at that. That's not nothing.

Since I started using Facebook regularly about 6 months ago, it has allowed me to connect, interact, communicate and share myself and my troubles and triumphs with others. For a naturally reserved person, it has allowed me to do it through my most preferred medium, writing. I have the protection and safety of non-face-to-face interaction, which has allowed me to share more than I would normally - just look at this blog! I never talk about myself this much. But write? No problem. (Because I am also editor-in-chief, I can try to make myself appear better and more intelligent than I am through careful editing. But I do try for honesty... most of the time.)

Facebook has also provided me with much needed feedback and support. Who knew the importance of the 'like' option? Knowing people are out there backing you to succeed is seriously uplifting and encouraging. Facebook can be good for you. But not too much. It doesn't pay to be obsessed: a little goes a long way.

These days, due to my lack of physical mobility and fluctuating ability to drive, I have depended on Facebook to retain a sense of being 'in touch' with people, without seeing them face to face. You see, despite all my self-centred faffing about in this blog, it's not just about me. I love seeing what others are up to, particularly as I don't get out much. I perversely enjoy a regular Collingwood v the world baiting session from certain FB friends (I can’t STAND Collingwood, but I love taking the bait). I enjoy humorous anecdotes and asides and even the cryptic comments that you have to guess at to find out what's happening with people. I love the pictures of family, little sons and daughters growing up, starting school, and going to the beach; the photos of big nights out and music festivals and going to the footy. Facebook is highly recommended for the convalescent, as it gives you a sense of living, not just existing.

And that's really what we're all here for, isn't it? To really live, and not just exist through the daily grind. Whether you use Facebook or not, whether elastics were your go, or your preferred pastime is tatting or planking, there are parts of our lives that show us we're really living and not just existing. Saying it on Facebook, Twitter, in a letter or card, in a phone call, over SMS or through photos or home movies reassures us that it really happened. Because basically we're insecure. And busy. And technologies make it faster and easier to connect, interact, communicate and share. That’s way cool, and the kids know it.

Number-ology

I am not a superstitious person, except when it comes to footy tipping or footy games with Hawthorn playing. I believe that once you've decided your footy tips, you should never change them, it's tempting fate.  And sometimes I think Hawthorn does better on the telly if I'm out of the room. It works best if my husband watches the game and intermittently yells "Buddy's kicked another one!" but that doesn't always happen.

I don't have a lucky number, lucky undies, a rabbits foot, an amulet, a side of the road that's better for me, and I don't believe in Friday the 13th. My dad's birthday has frequently fallen on a Friday, and he may even have been born on an actual Friday 13th, I'm not sure, but he's an absolute wonder, a gentleman and sage, and his mum raised him right, so 13 is no big deal. Additionally, according to the tv show QI, the devil's number is not 666, it's actually 661, so I like the number 6: there are 6 in my immediate family, and I have six nieces and nephews on my side of the family, so 6, its multiples and variants are fine with me. Also, I have had two black cats who I've loved intensely and who brought me only good times. Lately I have been asked a multitude of times whether I have had a run in with a chinaman, but the man who delivers our takeaway is perfectly lovely and once brought his son over with him because he wanted to meet Molly, our dog. So luck is hogwash to me, and so is superstition.

It's funny how many numbers are considered to be lucky or unlucky. 13, 666, 7, birthdates, disaster dates, anniversaries, there are so many numbers on which we place significance. In Chinese culture I believe the number 8 is auspicious, while numerology can spin any number into a collection of attributes, either positive or negative. It's the luck of the draw where you end up. Or, in other terms, your numerology number is a random idea arrived at by adding your birthdate together with attributes someone, somewhere, made up. Or maybe it's Egyptian. I don't know, I'm not in the mood for research today, and it might have just been made up by an ancient Egyptian anyway.

Randomness, coincidence, luck, superstition, auspicion (probably not a word, spellchecker doesn't like it), fate, karma, kismet, serendipity, curses, hexes, all a bunch of stuff desperately trying to explain the unexplainable: life and what happens in it. The good and the bad. And numbers feature a lot, ask a gambler. Also, I'm pretty sure the entire TV show 'Lost' would have been exactly that without all this bullshit (pardon my low English). Stevie Wonder had it right, 'superstition ain't the way'.

So 13 and 666 are not scary to me, nor is 661, the 'new' devil's number. We choose to place our own meanings on numbers and ideologies, superstitions and lucky undies, including choosing our spirituality (I prefer that word to "religion") and very rarely could it be considered a rational choice, as it involves some incarnation of faith. I have faith, but I think numbers are just numbers.

Here are some numbers that mean something if you or I want them to, or don't: 18, 21, 30, 39, 40, 50, all decades onwards to 100, 2, 31, 700, 4.

We come of age at 18 and are lawfully able to drink, drive, take responsibility for our own choices, and are old enough to go to prison. So why do we come of age again at 21? Tradition, habit, expectation, or an excuse for another party with better speeches? We place the meaning where we want to.

30, 40, 50, 60... 100. More age milestones we place meaning on. We get the sense of time passing us by, valued youth departing, age and decrepitude advancing. Bunkum. The phrase 'you're only as old as you feel' is cliched for a reason, it's true. I'm 38, have a walking stick, a shower chair, a disabled parking pass and an (albeit borrowed) wheelchair. Do you think I feel 38? Before all of this, I felt like a teenager most of the time. There are many people we meet and are surprised to learn their age, either because of their attitude or appearance. (So Nick, lose the hang ups about this year's milestone, will ya? You'll always be funky Nicko to me).

39 is another age milestone, though you may not recognize it, as it may be irrelevant to you. It's the age when women's fertility, their ability to not only conceive but to carry a healthy, genetically viable baby to term, drops dramatically. Yay, looking forward to my very next birthday. Yeah. But numbers mean nothing unless you let them. My body's real age could place me in a nursing home, so any kind of fertility, present or absent, could just be theory.

Here are the other numbers without meaning that I listed: 2, 31, 700 and 4. I'm going to work backwards on these.

I'm really questioning my wisdom in divulging this next one, because although my perspective on numbers is pretty well set, it doesn't work that way for everyone else. I haven't advertised that I have stage 4 cancer because a) some people don't know what the categorisations mean and panic, or b) they do know and they still panic. And truly, in my case it's not what it sounds like. Stage four is briefly and basically where the primary tumour has spread to another organ, but there are really two types of stage 4: the kind where they prepare you for the worst, and the kind where they don't. I am in the latter category and grateful for it. But you can see why I haven't shared this info around. It actually doesn't mean anything except in relation to treatment and ongoing screening, and they're sorted. And you'll further see why numbers mean nothing in just a moment.

There's a number called a CEA, which can be found by doing a blood test (the screening I mentioned above). It doesn't really matter but for those curious, it stands for carcinoembryonic antigen. The average person without cancer can have a CEA of up to 6 or 7. Cancer patients can have numbers over 1000. Before my surgeries (sorry for those who already know all this) I had a number in the 700s. I didn't know I had cancer. So that number had no bearing on how I felt or what I thought. I didn't know about the number at the time, I only learnt about it recently, so what meaning can it possibly have to me? After surgery the number dropped to 31. You think if they take out a tumour or two that's the cancer gone, but apparently not. But the real advance was my recent reading of 2, which at the time was nothing short of astonishing. That's a reading in the normal range for a person without cancer. You're going to insist that this has meaning, and I'll grant you it's a result to celebrate, and I don't disregard it or wish to complain. I'm just very frustrated.

The reason it means nothing yet is that I don't feel better. When I was apparently in the 700s I felt ill. I still feel ill with a CEA of 2. And although it's great, I'm glad my doctors are telling me I'm doing well, I'm still feeling crap and can't work and can't resume normal activity. I won't go into it again; if you think you're sick of hearing about it, imagine how sick of it all I am. I repeat: I'm just very frustrated.

So perhaps I should stop being a grumblebum. I'll reverse all my stone cold logic about meaningless numbers and come up with some that I place some happy meaning on. Even though it's bunkum. I'm allowed to be inconsistent because even though earlier I said I'm superstitious about changing my footy tips, I did exactly that last week and I was right to do so. So there.

Some happy numbers. 15: Luke Hodge. 23: Buddy Franklin. 35: the number of millilitres left to go right now in my portable chemo pump. 113: the number of days since chemo started. 43: the numbers of days until chemo will be finished, and hopefully normal life can begin again. 37: the number of days until my wedding anniversary, where I get to go to the footy for the first time this year, and in the corporate box no less. 5: the number of years my husband has put up with me. 3: the number of chemo sessions to go.

Without number: the abundance of supporters who work so hard to keep me sane and upbeat, and tell me I look well and even "beautiful" when I feel anything but. I try to reduce my miserable sod-ness for you all. Thank you.

Milestones and Millstones

Or,

"I Wish There Was A Different Word That Better Expressed Exactly What Hope Is."

Give sorrow words. The grief that does not speak whispers the o’er-fraught heart, and bids it break.
- Shakespeare, Macbeth

If this post comes out a bit jumbled and confused, then I’m sorry. It’s because I had a completely different idea in mind to write about and then something happened that made everything look different again. I’ll try to explain.

I haven’t been completely honest with you. It’s not that I’ve told you any lies, or at least not knowingly and that hardly makes it a lie if that’s the case. It’s just that I have withheld certain things, either to maintain mine and my husband’s privacy (of course), I wasn’t ready to discuss it, or I didn’t think others would be up for reading about it. But certain events have taken place over the course of the past couple of weeks to nudge me in the direction of getting some things off my chest.

In reading back over my posts, I have skated over the top of the one thing that undoubtedly has lodged most permanently and sorrowfully in my psyche. It is my deepest pain and my darkest space, and every so often it clubs me over the head and drags me off to torture me once again. I have hidden this millstone so artfully under my disguise that some may forget it is there. But I feel its weight. And perversely, I’m not ready to choose to put this burden down just yet.
I used to hate “hope”. Firstly, it reminds me of Days of Our Lives characters Beau and Hope, a pathetic pair who endured outrageous misfortunes to always be reunited, even after we long stopped caring. Also, it’s a sappy word that puts me on my guard when I read it, and can be over-sentimentalised and tritely trotted out Pollyanna-style, but those are not the reasons why I hated “hope”. I used to be on a repetitious monthly treadmill of “hope” and I can tell you, it was not my friend.

I’m going to lose some readers at this point. This is not going to be light reading, not for a few paragraphs yet. But it’s a funny thing, because hope is what’s going to keep you reading, if you decide to.

We are socially conditioned to expect to be capable of having children. We all assume we are fertile, until we find we are not. And here’s the kicker – there can be no reason for this. Some get to have kids, and some don’t, and that’s all there is to it. Or is it? says hope. Hope (the abstract noun, not the DOOL character) whispers in the recesses of your mind: if there is no reason for this not to happen, then surely there is still a chance that it could? And so, Day 1 of the monthly treadmill is rubbish, because your period started, but by Day 14, you’re hoping again, and you go right on hoping until Day 28, then Day 1 rolls around again. And this happens over and over for years.

And then you get help with it all. You accept that you can’t make it happen, just the two of you, so you get a team of people behind you. You get blood tests, and laparoscopic surgery, and your partner gets semen tests, and you get injections, and hormones, and nasal sprays, and ultrasounds, and follicle counts, and egg pick-ups, and with all this intervention, you think this really has to happen. And hope has become like your worst enemy and yet it’s your oldest and truest friend. It builds you up, buoyant, and anything seems possible, until the crushing reality arrives: that some things aren’t possible, some things don’t happen the way you want them to. And there is no logic, no philosophy, no art, no music, no written word, to explain it. Or make it feel better.

Hope is an inadequate word. It masquerades as something quite simple, and knowable, and straightforward. You know what hope is. But really, there is so much more to it. You can dread hope. You can’t control it; you can’t stop it from springing up from nowhere, and when it’s there, you can try and shove it away, squash it down but it won’t go. It leaks in under the cracks of the doors without you noticing. It is just THERE. Uninvited, unbidden. Like a blank, flat fluorescent light, dully buzzing, and blinking back on after you’ve tried to shut it off. Pure torturous evil and sweet blessed relief. How can hope be both those things? Why doesn’t the word express it better?

So the punishing ritual had to stop. Hope wouldn’t let us actually close the door; we just stopped resorting to the production line techniques we had undertaken. And we let things go for awhile, using naturopathic potions and trying to rein in our expectations, and make plans for enjoying ourselves, being thankful for what we had.

We got pregnant.

Hope, I really hate you.

Hope can transform from a humble, tentative wish into a full-blown monster of expectation. It can multiply and expand, changing from that dreary buzzing fluorescent light into bursting conflagrations of sun-like rays beaming throughout the universe. Hope morphs into gargantuan emotions like joy, a word which people hardly ever use because what it represents is so elusive, or goes unrecognised in lives expecting to make do with iPhones and lattes.

If “doubt is a pain too lonely to know that faith is his twin brother”*, then disappointment is hope’s big ugly unhygienic inbred cousin with halitosis. There is a direct relationship between the magnitude of the hope and its corollary, disappointment. Find the inverse of the bursting sunrays and you begin to have some idea. The cruel joke played on me dished up first joy, then worry, then fear, then dread, followed by two large servings of disappointment and grief, side by side. I was full to overflowing with this indigestible muck. I spat out the joy, and swallowed the worry, fear, dread and disappointment whole, but I keep chewing over the grief. Mixing the metaphor as is my wont, grief for my baby is the millstone around my neck.

I could choose to put it down, but I won’t just yet. Hope won’t let me. Even though my final “fertile” years are being eroded by cancer treatments and surgery, and by the time it is all finished and I am recovered I will be into the age of much greater risk, as long as it still hurts it shows that deep down no matter what I say to myself, I still want it. And really, I can’t expect to have it anymore. It is my deepest and darkest hurt.

But here is the problem: I am infected with hope. I am contaminated with it; its reek is all over me. It dogs my steps, and stalks my dreams.

The best news I’ve had in a year occurred this week. My cancer count is down to the level of someone without cancer. This result comes at my half way milestone for chemo, and changes the remainder of my course of treatment. It brings forward my expectations of recovery, and changes the landscape of my thinking. Those big bursting sunrays happened in my life just this week, and I felt joy. If this can happen, then what else might be possible?

Hope, my old friend, you stink. Welcome back.


* Kahlil Gibran, The Prophet

I Am Not Alone

I am being followed. Watched. Day and night. 24/7. I'm being stalked; inscrutable eyes are monitoring my every move. There's more than one set of eyes, and I think they're working as a team. The dark one takes the nights, and the light haired one is covering the days. Sometimes I can sense there's one of them under my bed. Every now and then I feel breathing close to my face. It's accompanied by a deep rumbling sound. I'm not too worried - it's purring.

So it's no suspenseful thriller. In fact, I'm coming to see it as animal therapy, and you can't put a price on it.

In our household, we have a dog, a cat and a fish. I know, some of you are questioning the inclusion of the fish, but I can't help but feel a loyalty towards the living things that arrive on my little bit of real estate (just call me St Francis of Assisi) and Lazarus the fish cannot go unrecognised. This loyalty also includes the blue tongue lizards, possums, mice, magpies, sulphur-crested cockatoos, currawongs, rainbow lorikeets, occasional kookaburras and even pestilential rabbits (it's their cute bunny tails that get me) that drop by from time to time. Strange how this loyalty or affection stops dead at noisy miners. Boy, do they need a natural predator, and fast.

Being at home and largely unoccupied for the last nine months I have had an extraordinary amount of quality time with my domestic pets. Some of you know of them, some also know what the bonds are like between animal and owner, and some can guess at the characters and natures of my pets because you are familiar with them. I thought it was time they had their moment in the sun, so I can share exactly and what they have been up to and how that affects me.

Frankly, Lazarus may have died by the time I have finished this post, but there's just no telling with him. A while back I was inspired by my sister’s kids getting a fish tank and each choosing a fish of their own to "look after".  It didn't work out so well for those fish, as it turns out now. But before the grisly end, I liked watching the fish swimming in their tank; it was calming to the eyes. So one day when I was "looking after" my nieces I took them out with me to buy my own tank and they helped me to set it up (the girls got home safely). This was well before the death by neglect that only recently occurred at their place, and they seemed like good role models to me at the time. I originally bought three goldfish, which the youngest of the three nieces promptly named 'Goldy', 'Stripy' and 'Spot'. I wasn't overly keen on these names, being reflective of a somewhat younger mindset, and also because of my penchant for looking for literature references in threes: Athos, Porthos and Aramis had leapt to mind, as had Harry, Ron and Hermione, and also Desdemona, Iago and Othello, but that particular naming option seemed somewhat doomed. It would not have mattered. The names Goldy, Stripy and Spot stuck, and all three fish died within ten days. I decided to start smaller, being a rookie fish tamer, and chose a large sturdy looking goldfish to carry on the 'Goldy' name. Having a fish tank was not only calming to the eyes; it was by extension calming to the mind, seeing him swim about in there. Watching him swim slowed down my breathing and relaxed me, and this combined with cool clear water really does soothe the senses. I really liked having him around.

Then he stopped swimming. He was just floating, not at the top, but not going anywhere. Was he asleep? Daydreaming? Who knows what fish think. Not much, I hear you say. But I tweaked the pH, added water conditioner, added small amounts of food, topped up the algae killers, and checked the filter. Nothing.

The following morning, he was swimming about again. Maybe he was just tired. Maybe he had chronic fatigue. Perhaps he'd just eaten too much, like on Christmas day when you literally can't move. Then he did it another time, and another time. He became known as Lazarus to us, because no matter how badly we treat him, he just keeps coming back. We think. Just tap lightly on the tank and check.

Lazarus is not one of the pairs of eyes following me about the house. He is more a living allegory of my life of late. He has periods of being down, then periods of being up. I don't wish to bind my fate to his in any totally mental or misguided way, given he could start floating at the top for good any day. But as long as he's still flitting about in there I feel good, and calm, and relaxed. And it is reassuring that I know some people who are experienced in performing goldfish burials if I need them.

Onto my spies. My diligent, vigilant sentinels, aware of every move or event taking place. Freaky.

I know a lot of people don't like cats. Some tolerate them (like my husband), and some are allergic which makes things less fun. Also, there are cat people and there are CRAZY cat people. You know who I'm talking about - the ones the cat food commercials are pitched at, whose cats wear tiaras and sit on velvet pillows, or have ridiculous names like Anastasia or Sebastian or whatever. (Hope I haven't offended anyone using those names for either pets or children, oops). I am none of the above. I am just a person who gets what cats are on about.

There's a common saying, that dogs have masters, cats have staff. Cats certainly won't conform to what you think they should be. If they do something when you tell them to, it's because they felt like it at the time, not because you asked. They won't necessarily cuddle you when you ask them to. They won't eat all their dinner at the allotted time if it doesn't suit them. They want to go out when you want them to stay in, and vice versa. If you can't find them for hours they will have changed their position according to maximum sunshine available in a place suitable for sleeping, i.e. bed, sofa, cushion, pillow (on top or underneath), clothes left on floor, fluffy towels, white quilts that show up black fur, black quilts that show up white fur, your precious new wool jumper, and so on. All in the space of a day. Cats are independent, they make up their own minds, and I love and respect that about them. They are contrary, bossy, uncooperative, dismissive, haughty and proud. So when you strike it lucky and find a gorgeous relationship with one who likes you, boy do you feel special.

One thing you often find with people who have animals is that they say the animal chose them, not the other way around. I know what they mean. I went looking for a kitten at an animal shelter after my previous cat, the noble and shy Errol, had died, leaving me bereft. Errol was a black cat, and I didn't want to heartlessly replace him with a lookalike, who could not possibly live up to what Errol had meant to me. When I walked into this animal shelter, in the room where the kittens were kept, this scruffy, motley charcoal grey kitten climbed up the inside wire of the pen he was being kept in (just like Spiderman) and got right up to eye level and checked me out. If I moved around the pen to see the other kittens, he followed me, climbing round his ten storey building, keeping direct eye contact all the time. And this is probably where I surrendered the control (or ‘hand’, as George Costanza might put it) in our relationship. I got him out of the pen for a closer look.

He promptly climbed on top of my head. If that doesn't speak volumes about his personality I don't know what does. It also inspired his name. Have you been to Trafalgar Square in London and seen Nelson's Column? I was Nelson's column on the day we met.

I left the room to think things over, as I wouldn't be able to take him home straight away due to him not being weaned. When I walked back in to the room, full of many other people seeking kittens to love and care for, he immediately made laser beam eye contact with me and moved through the pen to get to me. It was bizarre. He chose me, and we were done. And as he grew up, he turned into a black cat. That's cats for you.

For awhile, I thought that Nelson understood the pecking order in our house was; me, Nelson, my husband, then my dog Molly. Me as boss, because as the chief animal wrangler Nelson does more when I ask him than when my husband does. Recently I realised I was totally wrong, and noticed all the ways Nelson has trained me to do what he wants. He has used his bad behaviour to make both our lives easier, it's almost like win-win but I'm afraid he is the one in control of this situation. He has more 'hand ' in this relationship. An example: when he wants to come inside, he gets his claws into the wire door. I have already replaced the wire in the door once, and it is holding up well this time around, but I'd really rather not have him doing Spiderman impressions all the way up if I can help it. He knows this, and knows I'll get up and open the door rather than continue being held to ransom by flipping wire mesh. Another example: I will not allow him to be up on the kitchen bench, but if his food is there out of the way of my always-hungry golden lab, then Nelson will climb his way up onto the bench until he gets his way. I am under the thumb. So it's true: the pecking order in our house is Nelson, me, Nick then Molly. Lazarus gets no vote as he only has fins. Life's tough out here in the big pond where a cat is in charge.

The eldest of our animids (animal kids, I just made up the term) is the aforementioned always-up-for-food golden lab and apple of our eye, Molly. Everybody loves Molly. My family, Nick's family, friends, nieces, nephews, kids in the park, dogs in the park, people in the park, babies in prams, mums at the shops, everyone. But she is by no means perfect, in fact she was a handful from puppyhood and we are only now seeing the benefits of hard work and training now that she is six. She has wrecked three garden watering systems, countless plants, throw rugs, doona covers, sheets, buckets, pots, shoes, roughly ten dog beds, and a timber outdoor setting - seriously. She has jumped up on people with her muddy paws, knocked over small children, upset small dogs and taken a dump in the ocean (more than once). She is a regular Molly and Me.

Molly wears her heart on her sleeve, which doesn't quite work as we're not into animal clothing. She wears her heart in her eyes, her ears, her nose, her tail, in fact, all over. She does amazing aerial jumps when someone she knows is arriving, and can wag her whole body, not just her tail. Molly makes noises from ridiculously high pitched squeaks and yips when she loves you, to intimidating growls and a particular tone of bark when she doesn't know you or like the look of you (happens to couriers, tradies and door to door salespeople generally).

Both Molly and Nelson seem to have taken it upon themselves to keep an eye on me over the past nine months. It started with my being bedridden with Meniere's. When Molly didn't see me out of bed in the morning, she'd come round to my window to check where I was. She continues to do so: she did it just last week on one of my blah days, when I thought I'd take my time getting out of bed. She was round to my window several times, and barked her head off at everything in the street, in the air and in the vicinity generally, as if to say “back off and leave us alone today!!”. She drove me nuts but I could see why she was doing it, it's part of her job now. Her job also includes nasally checking me over from top to toe after every chemo and every outing, whether it is for eight hours or a five minute walk up the street (which she monitors from the deck where she gets an excellent view. To explain, I can’t take her with me as even the sight of the lead makes her crazily excited and she’s too strong for me). Dogs have a totally different olfactory sense to us: the nearest analogy is that smell is to them what sight is to us, but in truth we have no concept of what their sense of smell is like. I know Molly can smell the chemicals that are pumped into me fortnightly, and she watches me intently during those times. Her body language changes to a gentler, more careful state, her ears go down and she quietly follows me around the house. If I'm out of sight, she finds a window or a door and checks where I am or what I'm doing. She does the day shift, and then spends the night under the bed.

Nelson takes over for the night shift. He has minimal responsibilities during the day: if I've been out, he turns up to greet the car delivering me home, but his real duties start at about 8pm. He starts rounding me up for bed, or taking himself off to the foot of my bed to wait for me. Once I'm in bed, I get big time cuddles, nose to nose, front-paws-around-my-neck kind of attention. VERY loud purring happens here, and sometimes I think it's coming from me. Once the light is off, Nelson pins me down, as if to limit my ability to ever get out of bed. If I wake in the night, he wakes too, and pins me down until I can sleep again. In the morning he's off outside, and Molly is back on duty.

There have been tough days, especially during my bedridden Meniere's stage, when I was struggling to walk. One of my exercises was to walk up and down our corridor, slowly, with my stick, trying to keep my head up. Molly and Nelson walked it with me - they followed me up and down. When I got better at it, Nelson found better things to do but Molly stood halfway and watched me go back and forth, like a tennis match. They have been there through the ups and the downs, shown their worry and awareness, and responded in amazing ways. I am always being watched.

I am never alone. It’s wonderful.

All About Men...iere's Disease

I know - my thoughts on men might make for a more titillating post. Even an exposition on the feminist movement and its impact on men over the past five decades might be good, but in that I have no qualifications that would recommend my opinions (although I might have a stab at it one day anyway just for fun). At least with Ménière's Disease I have what I believe to be experience, even though I have no medical degree. But I have it on good authority, from someone who is qualified, that I have been experiencing Ménière’s since July 2010.

Ménière’s is named after a man. No surprises there. I don't mean that in a bitter and sarcastic way, because men have dominated world politics, medicine, industry, commerce, scientific endeavour, the arts, philosophy and TV sports coverage for aeons, while even though women's contributions in every area have also been enormous, women have been maligned, sidelined, passed over and burnt as witches. I digress (and wave goodbye to my male readers). I mean it in an "I'm stating the obvious" way because clearly the disease is not named after a body part and lots of syndromes and maladies are named after the person who first put the symptoms together in a way that is useful for explaining and treating them. Also because the word "Ménière" looks likely to be a proper noun, possibly French because of the decorative flourishes (yes, I know they are an acute and a grave, thank you grammar gendarmerie). Indeed, I can confirm our man is a Frenchman. If I had named this post "All about French men" I don't doubt it would have gained more hits on the internet. Again I digress. And wave goodbye to my female readers who wanted to read all about French men.

The optimistically named Prosper Ménière was a physician who, after being denied professorship due to "political tensions" (honestly, who hasn't used that old chestnut when overlooked for promotion), attempting to eradicate cholera and then working with deaf-mutes, decided to focus his attention on diseases of the inner ear. Doesn't matter how you get there I guess. He published a paper in 1861 called 'On a particular kind of hearing loss resulting from lesions of the inner ear', or whatever all that is in French. Je ne sais pas.

What I do know is that even though Live-Long-and-Prosper defined the disease it is very difficult to diagnose. I had my first symptoms in July of last year, but was not diagnosed until October. It started when I was at school, in the library with my grade. I like to read picture story books to my 11 and 12 year old students, as some great inferences and understandings can arise from shared viewing of great illustrations. I held the book upright on my lap, and bent my head over to read it (upside down, teachers can do that. Oh ok, everyone else can too, it's not that hard). I felt like the room swooped around me, and I grasped the chair because I thought I was going to fall off it. My stomach had lurched with the initial sensation, and I felt like I was going to vomit. Not a good prospect in front of a grade of kids. Lifting my head stabilised things for awhile, and I shifted the book to be able to get through it. Needless to say, the discussion was shorter than brief and the depths of the text were left unplumbed. I was assisted to the first aid room where the vomiting began.

The sensations I had experienced - vertigo, nausea and vomiting - are the most easily recognised of the signs associated with Ménière’s. There are other symptoms I experienced in the ensuing months: loss of hearing, tinnitus (ringing in the ears, deafening at times), earaches (or a feeling of fullness in the ears), headaches, and loss of balance. People with Ménière’s can experience some or all of these, and the disease can advance in stages, be present intermittently or last for prolonged periods of time. I would be considered Stage Two out of a possible three stages - in a prolonged episode but with only one ear affected and therefore with great hope that it will resolve, although hearing damage in my ear is likely to be permanent, and my other inner ear will have to learn to compensate for my sense of balance.

At the first onset of symptoms last July, I was diagnosed with an inner ear infection. I had four days off work then returned to school. I worked a full day, then the following day I was hit by even greater nausea than before, and was sent home. I have not returned to work since then. I was referred to a disappointing man: an Ear, Nose and Throat (ENT) charlatan, sorry, specialist, and was scheduled for a battery of hearing and inner ear tests for which I was far too unwell at the time. There was no relief for my symptoms and the inner ear infection diagnosis was set aside pending balance tests in August. I was essentially sent to bed with no clue as to how to help myself, suffering intense nausea and dizziness at every movement of my head.

Prosper? I did not. By late August the nausea, dizziness and earaches were unbearable, and I was admitted to hospital due to vomiting and dehydration. A CT scan was performed, and steroids were prescribed for a condition vaguely called vestibulitis and labyrinthitis at different stages. Referral to a physiotherapist for balance rehabilitation was recommended for some point in time when my stomach could tolerate it. In the meantime I lost around 9 kilograms, despite the steroids.

What this succession of months looked like in real terms: me, in bed, every day, trying not to move my head or vomit. My husband setting me up with some kind of breakfast before he left for work. Mobile phone and house phone on the bedside table. Mum, dad, mother- and father-in-law, two sisters, brother or aunt taking turns to drop by every day to try feeding me something for lunch, and give me some stimulation or conversation. The same people, and some good friends, cooking meals for the freezer so my husband had one less thing to do. Mum working her way through a WWII-era recipe book 'for convalescents' to try and tempt me (N.B. the beef tea was not a success). Mum, dad, in-laws and husband driving me with a bucket on my lap to balance tests, doctor's and physio appointments and an MRI scan, and picking up medical certificates and prescriptions on my behalf. Mum doing shopping, pantry organisation and some general housekeeping. Husband working, cooking, cleaning, walking the dog, doing the washing, doing the shopping, paying the bills and being bewildered. Ah, marriage. Poor schmuck. What a deal he got. (And what an excellent man.)

What this succession of months meant, in real terms: I completely lost my independence. My ability to work. My ability to drive. My ability to walk. My ability to BALANCE! Honestly, you don't know what you've got 'til it's gone.

Do these simple tests, even if mentally:

Walk down a corridor. Do the walls feel like they're coming in on top of you? Do you move away from one of the falling walls and hit the other wall all of a sudden?

Walk past a descending staircase. Do you have to concentrate and lean away from it in order to avoid falling down it, even though you're just walking past?

Stand still. Then suddenly move your head. Do you tilt and wobble as though someone just pushed you?

Walk in a straight line, and then move around a stationary object. Do you suddenly tip over navigating around the object? Do you then stagger to correct yourself and fall over the object anyway? Funny, I know. I laugh too. But if you answered 'mais non!' to all those questions, you can feel proud of your excellent balancing skills, and your ability to respond excitedly in the negative in French.

I have felt like the breeze can knock me off balance. I have swayed when I thought I was standing still. I have changed direction and felt the whole earth turn on its axis, even though nothing has moved. You do not want me behind the wheel of a car when this stuff is going on.

I have also experienced the emotional impact of Ménière’s. Being unbalanced doesn’t stop at the vestibular system in your ear – when an illness like this hits you, disorientation starts with the physical and ends with the mental and emotional. I have felt helpless, weak, insecure, dependent, pathetic and hopeless. At times this led to depression and malaise. I felt like dropping my bundle – what was the point of even trying to get out of bed? I felt like I had to give up parts of myself just to get through. To accept help. To accept that I couldn’t work, couldn’t drive, and couldn’t look after myself. It was an effort.

My eventual diagnosis of Ménière’s came from a second but unrelated hospitalisation in October. It came through an excellent man, my gastroenterologist, who had seen me in July (again unrelated) and was surprised at my lack of improvement over that time. He referred me for a second opinion, to a man not denied his professorship (outdoing old Prosper there), an Associate Professor of Otology and Neurotology (just a fancy name for an ENT, in fact I'm surprised it's not in French). Because of these men, I began to have some way of handling the illness. The Ménière’s diagnosis gave me more information - firstly it is idiopathic (of no known cause) and cannot be cured, so treatment is for the management of symptoms. Secondly, and this is significant, it can be brought on by stress. I think miscarrying after four years of trying to get pregnant and being severely anaemic and having active ulcerative colitis probably fit the bill here. Also, I learnt that a low salt diet helps to treat the disease, as Ménière’s is exacerbated by excess fluid levels in the inner ear (endolymphatic hydrops if you want to Google it) and salt causes you to retain fluid. While pregnant, I was having salt on my salt, I craved it so much. Oops. My qualified Associate Professor also told me that in order for my Ménière’s to get better I had to prioritise gastric health. All bodily health comes from what you eat, and IF you eat, and you can't hope to get well without a focus on eating well. Of course, everything is complicated by the fact that I have had two tumours surgically removed, with all that entails, and I am being treated chemically for cancer. Nothing is simple when you have a few things going on at once - this is why I'm still suffering from Ménière’s after all these months. I haven't had the periods of remission that a lot of people have, and probably won't until chemo is finished. Patience is required: it has to be cultivated. Like a Frenchman. Ooh là là.

At present, I am no longer bedridden, although chemo provided a Ménière’s setback several weeks ago. But for all that, I am in what I am beginning to call a standard phase, as I've been here before – prior to liver surgery, and prior to chemo: I am eating well, so my muscles are getting strong enough to compensate for my vestibular system in the inner ear. I am beginning to walk (with my walking stick) with greater strength thanks to a daily walk up the hill I live on, and I am functioning with a moderate level of balance. The deficit is only seen when I haven’t been eating, when I turn my head while walking, I change direction, or get up too quickly. I am almost ready to consider driving short distances again, as long as I can maintain my current level of ability. My capacity to work is in part measured (by me) by whether I can drive, so this is an important goal.

C'est la vie, or at least, c'est le Ménière’s (I just made up the gender for the article 'le' because Prosper was a bloke, apologies to any French-speaking purists). I hope you know more than you did before (about Ménière’s, not inventing French parts of speech) and can see where it fits into the current overall dysfunctional picture of my health. And do spare a thought for those of us on a low salt diet. God I miss bacon. And Cheezels. Merde.

Notes:
I am not a medical practitioner, my descriptions are from my experiences or information provided by Ménière’s Australia.
I have neither researched men for fifty years nor studied enough feminist literature to attempt an exposition on the feminist movement and its impact on men over the past five decades, so you are safe.
I do not speak French.
This is not an advertisement for Cheezels.

Great Expectations

"We are on a perilous margin when we begin to look passively at our future selves, and see our own figures led with dull consent into insipid misdoing and shabby achievement" - George Eliot, Middlemarch, Chapter 79.

In other words, go not passively into your own future or it might end up a bit crappy.

I was recently given a book to read by an exceptionally good friend. It was neither Middlemarch nor the Charles Dickens classic of which I have plagiarised the title for this post. This excellent friend handed me this particular book with a number of disclaimers and even an invitation to throw it in the bin if I so chose. His wife distanced herself from the whole transaction which made the offering of this book all the more brave.

One of the pastoral carers I spoke to when I first found out I had cancer had counselled me that people would offer all kinds of help. She correctly forecasted that a large share of it would be amazing and overwhelming, and conversely some would be not just unhelpful but dispiriting, patronising or completely unrealistic. She suggested that I accept all help gracefully, then privately and metaphorically return anything from the latter categories to the universe, metaphysically speaking. "Accept then ignore" is probably a less airy-fairy way of putting it. In this case however, I accepted the book with a mind just slightly ajar rather than fully one way or the other, being partly closed due to the prior warnings attached to receipt of the book, and partly open because of my knowledge of and esteem for the giver.

Without going into stultifying detail (that's for later) the book is essentially a self-help/ motivational/ quasi-spiritual guide to having a successful life, using the philosophies embedded in various practices of martial arts as both its framework and marketing angle (its author is on the guest speaker circuit). I call it quasi-spiritual because while including elements of both eastern and western spiritual teachings, the book lost both its spirituality and its soul when in a chapter entitled "The Power of Self Image" the author related an anecdote about how he coined his professional pseudonym of "The Corporate Ninja" and finished with the sentence "A unique selling proposition was born". As a corporate defector I was again gratified at my escape and reminded of one of the reasons for it. (Apologies and respect to all friends enjoying rewarding corporate careers - it simply wasn't my path to take.)

Most (if not all) self-help or motivational publications are based around one premise - our expectations of and for ourselves. They offer an alternative to your present self, projecting positively towards who you can be, and what you can become. They also try to offer a pathway towards that projected future self by using visualisation techniques, workbooks and other exercises to give their methods a practical angle, to engender change that is both achievable and lasting. Theoretically, in so doing, one becomes an active participant in achieving one's expectations.

But what if our expectations are just plain nonsense? If you have not read Charles Dickens' Great Expectations, or it has been a while and you are, like me, a little rusty on the details at times, the novel is one of Dickens' most pessimistic stories. Like many other Dickens novels, it is filled with memorable and exaggerated characters, in particular the wealthy Miss Havisham, who having been jilted on her wedding day stops all her clocks, closes the curtains, leaves the wedding cake on the banquet table for the spiders and mice to live in and devour and remains incompletely dressed in her wedding finery (she had only one shoe on) for the rest of her life. The embodiment of rejection, her expectations shattered, she shuts down as we all want to when we are hit by personal catastrophe. This is sad enough, but the true ironic tragedy of the story centres on the main protagonist Pip, and the object of his affection, the hard hearted Estella.

In brief, and possibly with many oversimplifications and errors, Pip is an orphan being dragged up by his sister in reasonably meagre circumstances, and is apprenticed to a salt-of-the-earth type blacksmith. He meets and fancies Estella who has been adopted by the aforementioned Miss Havisham. Pip is not Estella's social equal (despite her parentage being questionable) and Estella is being raised by Miss Havisham to exact revenge for her bitter rejection on a new generation of unworthy male suitors. Pip is undeterred by his repeated rejection and the cruel barbs dished out by the beautiful Estella, and he believes it to be due to his lowly circumstances. Lo and behold, he is lucky enough, through an anonymous benefactor, to suddenly have thrust upon him 'great expectations'. He comes into a 'handsome property' and will be transformed into a gentleman with excellent prospects through the acquisition of appropriate means and education. Pip believes Miss Havisham to be this mysterious benefactor and is thrilled to think he has been chosen for Estella. Pip becomes a gentleman, then a wastrel and everything he believes Estella desires, arrogantly turning his back on his former friends and connections to reflect his raised status in life.

SPOILER ALERT: If I'm about to ruin the ending for you, stop reading now.

His expectations are false. Estella rejects his best advances. Miss Havisham is not his benefactor. His money came from an old convict, whom a young Pip had assisted to escape from a prison hulk under threat of terror and the thought of whom fills him with disgust. This same convict wishes Pip to consider him as family, but is in truth the father of Estella. Every one of his great expectations have amounted to nought, and Pip feels shamed by his victimhood at the hands of chance, fate, Miss Havisham and most painfully, Estella.

Here ends the summary (but not the story, you'll have to go re-read it), hopefully leading to some excellent and resounding points I am going to make, and tie neatly together with the afore-mentioned self help advice and George Eliot's quote. Here goes.

Astute followers (and those that can read dates) will know that I haven't posted on my blog in a little while. Another genuinely brilliant friend was concerned that I was too ill to write, and this was temporarily true, but she also shrewdly suggested that writer's block, and the weight of my own and others' expectations may have been a factor. It is true that I don't wish to bore, frustrate, insult or offend the sensibilities of anyone who is generous enough to read what I write. So I have hovered in a little anxiety over the expectations of my readers and waited until I felt I had something worthy to write. I am not sure whether you have great expectations or not, perhaps just enough interest to get you through and that is not only fine by me, but also miraculous. These expectations imagined or otherwise, can get rather weighty.

In the past, I had great expectations for myself. I had excellent prospects. Great husband, amusing dog, crafty cat, wonderful immediate and extended family, firm friends, comfortable house and rewarding career. Then I had a miscarriage, got Meniere's Disease and ended up with cancer. My future prospects became somewhat harder to determine and just a little bleaker. This is not another pity party, so please bear with me: my expectations changed regarding what might be ahead of me. Then towards the end of summer my health improved, my balance improved and I had a sense I was on my way back. I expected this would continue, but chemo put not so much a spanner in the works, but the whole damn Sidchrome set. I expected to get better when most people expect to get a little worse on chemo. Like Pip, my expectations were a little bit of nonsense. I had it a bit backwards.

In recent months I have heard many courageous cancer stories, and I am ashamed to admit that at times I have felt a little aggrieved when a cancer survivor has conquered Everest or done something amazing and inspiring. My nauseated self has been pissed off that these people are making me look bad. I have felt crappy and horrible and suffered some debilitating and at times scary side effects and symptoms. Is it the expectation that in surviving cancer you have to conquer the world? I just want to be able to walk my dog.*

My expectations are not so great as to include dragging my bony arse up Everest, nor even to expect to have a child one day when I recover from everything, but this is not to say that I have ceased to have expectations. Having expectations is like goal setting, or having some vision of where you'd like to be headed. Cue the self-help books.

I accepted the book written by the ninja person because firstly it was given to me by someone who I greatly respect and who was genuinely trying to help in any way possible, and that is never to be taken lightly. I also accepted it because with something approaching an open mind you sometimes find one thing that is worthy of your notice. I have been studying, reading and collecting snippets of a range of eastern and western philosophies since before I studied it at university (as well as chemistry, as you may recall) but am no expert in any of it. I like what resonates with me and that's all there is to it. (N.B. I wouldn't mind a little kudos as the following was found on page 236 out of a 244-page book, so I slogged through a fair bit to get there - this is the kind of commitment I can show when asked by a friend). Anyway, what I found was this one thing, in a chapter called "The Book of the Air, or the Book of the Void" from The Five Rings, a treatise on strategy and philosophy by Miyamoto Musashi, Samurai swordsman. I like the title. But what I most liked was this, and it is by no means new, likely predating 1645 in which it was purportedly written down this way.
There is no beginning or end, only cycles.
There are no successes or failures, only cycles.

It is also not confined to eastern philosophy: Alpha and Omega, anyone? To everything there is a season.

As with many philosophical thoughts, they often prompt memories or feelings from other times. This one put me in mind not only of the bible references above, but of a phrase I have collected from a favourite author, Jeanette Winterson, that "no emotion is the final one". No state of being, whether emotional, physical, intellectual or metaphysical, has any permanency. We are constantly changing, through experience, time and circumstances, so when we are down, we come out of it; when we grieve, time takes away the sting; when we are happy, it can fade to nothing; even a steady contentment requires constant maintenance for it to linger for any space of time. And then it passes. Nothing is static in human life and our experience of it. There are only cycles.

Just like in the self-help and motivational books, one can choose to be an active participant in achieving one's expectations, being an agent of change as a part of the cycle. Kate Flint provides the introduction to my edition of Great Expectations, and she remarks that the novel "calls into question how one may understand the processes of history... And the extent to which it is possible to play an active part in the shaping of one's own, or society's future". She, along with George Eliot at the top of this post, points to our ability to participate actively in creating our possible selves, in contrast to Pip, swept along passively by the forces at work in his life, and watching his expectations decay and rot like Miss Havisham's wedding cake. (Incidentally, both Pip’s first name and surname (Pirrip) are palindromes – where they end, they can also begin again. Pip should have known about cycles). I don't like to rely too much on the future as you may know, but mindlessly (with "dull consent") being buffeted by circumstances "into insipid misdoing” is not my plan either. Thankyou Ms George Eliot.

My expectations are simple, and at the very grave risk of over-quoting, and in a total clash of cultural references, they can best be summed up by the lyric found in Rolling Stone's 12th Most Annoying Song and Number 35 on AOL Radio's 100 Worst Songs Ever, "Tubthumping" recorded by the band Chumbawamba: I get knocked down, then I get up again. That's my great expectation of myself. It just happens to occur on a fairly regular basis lately, coinciding on a micro level with fortnightly chemotherapy treatments. Get knocked down, then get up again.

Look at that - it's a cycle. And best of all, nothing is permanent: this too shall pass. Hooray!

Credits
Thank you to my friends who are mentioned in this post – and as ever to all my friends, but those of you who are mentioned know who you are, and you're ace.
Charles Dickens, author, Great Expectations and 14 other major works of the Victorian era
George Eliot, author of Middlemarch and around 5 other Victorian era novels
Jeanette Winterson, author of Oranges are Not the Only Fruit and other contemporary novels and essays
Kate Flint, Professor of English, Fellow of Linacre College, Oxford
Ron Lee (The Corporate Ninja), author of What Shintaro Taught Me - not a plug, in case you hadn't worked that out
Miyamoto Musashi, author of The Five Rings (the Samurai, not the protein drink, not a plug)
Wikipedia's Chumbawumba and Tubthumping entries


*Interestingly, being able to walk my dog is pretty much dictated by my Meniere's, not the cancer. BTW, where is the "rah rah" for Meniere's sufferers? How did you find out about it? And did you know chemo can make it worse? Should I write a post about it? And, BTW, the first 9 of the 12 kilos I have lost was due to Meniere's, not cancer. And, BTW, sometimes it's the Meniere's that keeps me on the couch, not chemo, and not cancer, in case my previous sentences hadn't led you to working that out.)