Monday, April 18, 2016

Life as a cancer spouse (or chemo groupie)

Since my diagnosis last year I've shared my reflections on this blog. Now it's time for Melanie, the woman who has been by my side throughout, to have her say.

October 2015 was a memorable month in our household. We were in the early stages of a much-anticipated pregnancy and digesting the news of a possible job offer overseas. And Ari was rapidly becoming unwell with what turned out to be a primary mediastinal B-cell lymphoma. Fast forward six months and with treatment over it seems like the right time to look back on the experience of being a cancer spouse. 

1. Listen when other people say it's more important to be at the hospital than in the office. There are always going to be other people who can write articulate and persuasive documents (although usually not the people who assert that this is their skill set), but not many people can hug your husband before surgery. I deeply appreciated having a boss who supported me using my accumulated carer's leave and helped make the case for a work iPad. Responding to work emails can be as good a way as any to pass the hours waiting for news in hospital wards ... and no one will notice if you roll your eyes at the more ridiculous requests. 

2. Sometimes the best thing someone else can do to is take the initiative. Many people asked how they could help over the past six months and sometimes we were able to come up with a good answer (thanks Jude and Pete for mowing the lawn, and Ruth and Will for loaning me your shower when Ari was too cytotoxic for us to share a bathroom, and Brie and Ella for taking over managing the netball team). But often it was hard to think of something specific - and at those times it was great when friends and family made their own call. The food hampers, frozen homemade dinners and gift vouchers for food delivery services were much appreciated. It was good to have visitors in hospital when Ari felt up to it. As a habitual organiser of social get-togethers, I was particularly grateful for friends suggesting and organising gatherings where I only had to remember to rock up. And our parents were thoughtful in finding ways to help - constructing a baby's room, playing the role of medical warrior to find all the info we could on treatment, managing logistics and doing laundry - which is possibly more than Ari and I deserved when we had both been stubbornly resistant to well-meaning parental assistance for decades. Asking for help graciously is a difficult skill, but one I will continue to practice after we have a new baby in the house! 

3. Any cancer story is part of a larger cancer narrative. Lots of people's lives have been touched by cancer. And many friends and family were generous in sharing their own stories, mostly of battles fought and won. It was always encouraging to hear about those who made it through - especially those (Kylie and Anita, Skip and Alice, and Adelle) who had experience with lymphoma and had wise advice to share. As Ari has written about previously, the protagonists in a story can set the tone, and we were keen to be optimistic. But acting as though beating cancer is just about having the right attitude is not fair to those who have fought the battle and lost. I miss my lovely friend Liv who passed away in 2014 after two years of giving it her all. Sometimes the science just isn't enough. Hearing a lot of stories confirmed the feeling that Ari, while unlucky to have cancer, was lucky to have a cancer that was very responsive to chemotherapy, lucky to live just down the road from the brand new Canberra Region Cancer Centre, and lucky to have a bub on the way. 

4. Hang out with friends who have news of their own. Some coffee catch-ups are inevitably going to be a bit one-sided with updates on doctors' appointments, blood tests and scan results. But it is tiring to focus on your own crises all the time, and therefore refreshing to hear about the ups and downs in other people's lives, including the lighthearted stories. I encourage friends to say "I hear your medical update and I raise you one unbelievable tale of going-out-on-Thursday-night-meeting-a-lovely-boy-and-then-having-to-sit-next-to-him-in-an-interdepartmental-committee-meeting-the-next-day". 

5. It's okay to cry. I'm not a big crier generally (apart from sad movies ... and scary movies, and I extend my apologies again to the guy who thought that The Sixth Sense was a good date movie back in 1999). But a good cry in the car driving home from the hospital can cleanse the spirit so that the next task can be tackled. And despite Aussie office culture being largely antithetical to overt displays of emotion, unless the subject is football, I found my colleagues were remarkably robust with the occasional teary episode. There is also unexpected humour to be found in dealing with hospitals, doctors, other patients and well-wishers and it's good to share these experiences too so it's not all delicate and gloomy. 

6. Napping on the couch is strongly encouraged. I'm not sure why it's more comfy to fall asleep on the couch than to walk all the way to the bedroom and get into bed (I should note that we live in a one-bedroom house, so the walk "all the way" to the bedroom is about 1.5 metres). Perhaps pregnancy was an added soporific in my case. Getting enough sleep, whatever way you can, makes everything else a bit more doable. 

7. Tempt the parking deities. I'm not sure what transport-related goddesses I must have prayed to in a previous life (Adeona, the Roman goddess of journeys, or Hecate, the Greek goddess of the crossroads perhaps) but I incurred no parking fines in six months of leaving the car in one-hour spots at the hospital for what turned out to be five-hour visits. I abided by the rules as much as possible. But I also decided that it was not a priority to have the right change or download the right app (I'm looking at you ANU), and that fines would be paid if they came. And having had my six months of grace I'm now back to conscientious parking payments. 

8. Having cancer is an individual event, but battling it can be a team sport. No matter how crappy it is to watch someone you love have toxins pumped into them or wait for days for test results, it is crappier to be that person. It is important to take cues from the star player in the game - something I didn't always get right. I know I offered irritatingly sunny optimism in times of frustration and unnecessary assistance with basic tasks, which reinforced the feeling of being an invalid. But being "here if you need", as they say in netball, is really important. While Ari and I didn't mention the traditional "in sickness and in health" in our marriage vows, recent research shows that being married helps cancer patients survive longer. So I like to think I have done my bit to ensure Ari is around for a long time to come, adding amusing updates to this blog.

Courtesy of Out in Canberra

Sunday, April 10, 2016

Buy-buy baby

I have a theory. The amount of gear a person needs in order to get through their day is inversely proportional to their age.

A person in their twilight years can while away the hours with a crossword puzzle, a trilby hat and a flat white, all put to good use while perched on a stool. A person in the throes of middle age carries a brief-case, dons a suit and gets around in their car, all of which they deem essential. A teenager is lost without a mobile phone, a bad hair-cut, a student debt and a giant chip on their shoulder. And a toddler goes nowhere without a bag of nappies, several changes of clothes, a hand-knitted blanket and the complete works of Eric Carle, lest it spend a moment bored or soiled.

Then you get to newborns. Just days into its life a newborn needs such an enormous collection of things, amounting to many times its own body weight, that just being transported from the maternity ward to home resembles the holiday of a minor member of the royal family.

With this in mind Melanie and I gingerly stepped into the world of children’s gear superstores. Big cities offer a wide range of alternatives, but in Canberra our options are somewhat limited – Baby Bunting in Fyshwick (yes, that Fyshwick) and Babies R Us in Majura have been our destinations of choice.

Of course, online retail offers near limitless possibilities, but buying baby gear requires a tactile experience, so we know exactly what we’re getting. Though with other types of products we are happy to leave the specifics of a purchase to the online retail gods, in this case we want to see the goods up close and feel the texture. The fabric on a blanket may look like the softest of teased yaks’ hairs, but unless we can rub against it ourselves, we can’t be sure.

So it is that we’ve spent many a Saturday browsing the aisles. Given the vast range of needs to be met, the rapid frequency with which children outgrow things and the phenomenal features that can be attached to each item, the selection at these superstores is so vast that anyone venturing within best be prepared.

Baby goods must get manufacturers and retailers salivating. It is the perfect environment for selling enormous volumes of product, and at eye-watering margins.

For starters, first-time parents are approaching the task ignorant to what their true needs are. Unless you have actually brought up a child, it is difficult to know what equipment you do need, and what is surplus to requirements. So it’s easy for a manufacturer to make their product look like an essential purchase with little more than a complicated name and a picture of a smug parent (almost always a mother) and a contented child. Depriving a child of a Steelcraft Snooze N Play Portacot Moonshadow seems tantamount to neglect.

Secondly, parents have almost no appetite for risk when it comes to the welfare of their child. It’s one thing for a person to consider the cost-vs-safety trade-off when making a purchase for themselves, but quite another when considering it for their child. The consequence? Plenty of parents opting to pay big bucks for features they almost certainly don’t need. Generations of kids have grown up with simple change-tables, cots and jumpsuits, with few experiencing any ill-effects, but now manufacturers of those same things have found all sorts of ways their own products could be a death-trap – and so offer improved safety features. While some are essential, many are not. But what parent is going to take the chance?

Thirdly, baby gear often amounts to status goods for the parents. A Hyundai and a Mercedes both achieve the primary purpose of conveying the occupants from origin to destination, but they send very different signals to the rest of the world about the driver. The same is true of much kids gear. 
With every purchase a parent has at the back of their mind – what will other parents think? The svelte pram or Lamaze toys may be greatly beneficial to a child, but they are also a chance for parents to show off their style. It should be no surprise, then, that the cost of some prams extend beyond $2000 – a Silver Cross Surf Aston Martin Edition, anyone?

With so much gear on offer, a parent must tread carefully through the jungle.

When it comes to product design, there’s a fine line between cute and tacky. So many items, particularly clothing for youngsters, seem intent to entrench their parents’ idealised image of their child. Young boys’ fashion emphasises primary colours and images of strength, awash with pirates and powerful animals, while the young girls’ items are dainty and delicate, with pastel hues evoking princesses and fairies. Some of the branded gear – we’re looking at you, Disney – seems to take a heavy-handed approach to putting Aladdin or the Little Mermaid or whatever it might be front and centre. Parents seeking to fire some creative sparks and minimise insecurities in their child need to be discerning shoppers.

On most of our visits Mel and I head to the store together and the shopping is a team effort. But on these trips it’s hard not to keep an eye on some of the other couples browsing the aisles. The dynamics vary a lot.

Some pairings wander through the store like a love-struck couple, never straying from each other’s side and stifling high-pitched squeals as they pick cute-as-a-button items off the shelves. Then there are other couples shopping as if out of a sense of solemn obligation, traipsing through to get what they need within the least effort or fuss. And then there are couples where the expectant mother is browsing full of enthusiasm, while their disengaged partner hangs back and spends his time staring at his phone. It’s not hard to picture what the couples would be like as parents, us included.

But short of bringing up the child in the ascetic spirit of a monk, acquiring some of these things is essential. So what’s the best way to do it?

One approach might be to bypass the retailers altogether and make the most of hand-me-downs. We’re lucky to have a niece who not-so-many years ago was a newborn, and so has many things for a baby's room that come in handy. We’re also lucky to have lots of generous friends who have offered the things they no longer need. (There is, of course, great symbolism is parents giving away the newborn-friendly items in their home, for it suggests they think their child-producing days are over.) Another approach is to rely on the guidance of others who have been there before, taking them as a shopping partner to help separate the essentials from the nice-to-haves from the you’d-have-to-be-crazies.

And failing that, you can always take an educated guess, hope for the best and risk the opprobrium other parents strolling past with their Aston Martin. So be it.