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.

Monday, February 29, 2016

My neat parenting theories, before kids get in the way

For several years I’ve had ideas about parenting – how to bring up kids so they are thoughtful, creative, caring and well-behaved people. Until now, they’ve been nothing more than theories. But when our child arrives into the world, probably in May, I’ll get to put my theories into practice.

As with many things in life, there may well be a big gulf between the things that make sense in the abstract and those that operate well in practice. The daily reality of raising a child – potentially incessant crying, fussy eating and mountain of soiled nappies – will undoubtedly make it much harder to put my ideas into practice. Remaining calm and thoughtful on no sleep and a child with whom you cannot reason is difficult. But regardless, having a strong roadmap to guide the way through child-rearing is a good starting point, even if it’s not always easy to follow the path. Having watched friends and family raise kids, I have nothing but respect for the effort parenting takes and our child will be lucky to be surrounded by plenty of happy well-adjusted kids.

In some ways my wife Melanie and I are lucky to be first-time parents well into our 30s. As well as remembering my own experience as a child, I’ve had a chance to watch plenty of other people bring up kids and seen what parenting strategies appeal. I believe the life experience I’ve had has also given me a sense of perspective that makes it easier to keep calm amid the chaos. I’m happy to be doing this at this point in my life rather than when I was in my early 20s. So what are the parenting theories I’m keen to put into practice?

For starters, I want my offspring to grow up in an environment rich in nutrition for brain, body and soul. Our personality and interests are largely a product of the environment we grow up in, so the quality of that environment means a lot. Clearly this manifests itself in the things a child eats, but also in the sounds it hears, the way it spends its leisure time and the things it sees around it. In practice this means avoiding low-value junk, from crappy television to blaring pop music to crass toys. Each of these things can be replaced with things of quality that enrich life rather than diminish it. The debate about exposure to screens has gone on for a while, but a consensus is emerging that a child under age 2 should not have any exposure at all. This seems like a wise approach, although the absence of screens needs to be replaced with the presence of humans.

I want my child to be curious about the world and to challenge established wisdom. A child who asks lots of questions can probably be an occasional nuisance, but this is more than outweighed by the benefit of that child developing a willingness to understand how things work rather than just accepting them as they are. I would hate for my chid to see me as infallible or an unimpeachable source of knowledge – instead I want my child to challenge me like they should any other figure of authority. Recently Melanie and I were discussing how we would talk about Father Christmas, Eliyahu HaNavi, the Tooth Fairy and other whimsical characters. When the inevitable doubting questions arise, my preference is to encourage the child to look at the evidence and make up their own mind. I don’t want to burst the bubble of fantasy, but I don’t want to abuse my authority status to perpetuate a mistruth. Instead, I want my offspring to think for themselves. I dream of one day having a child of mine say to me “Dad, where’s the evidence?”.

I want my child to experience the consequences of their actions. Humans develop thanks to a constant feedback loop that means we act, we see the impact of that action, and we internalise that lesson for next time. Offer reinforcement for an action and the action will continue. But if you shield a person from the negative consequences of an action, the action will continue as well. I would like my child to experience the impact of the decisions they make in order for them to make better decisions the next time around. Take the classic dilemma of a child who resists putting on their shoes before going outside – it seems to me that more fruitful than arguing with the child about the merits of wearing shoes would be that child’s brief exposure to life outside without shoes, after which they are likely to quickly seek shoes. And it will be a lesson remembered for next time. (Yes, of course, the obvious caveat applies – always shield a child from genuine danger rather than letting them learn directly the consequences of, say, playing with angry dogs or speeding traffic.)

...and sometimes being barefoot is just fine.

I want my child to be able to achieve its full potential rather than being bound by stereotypes of gender, class, ethnicity or geography. Kids learn a lot about what’s socially acceptable and what’s not by the examples that are put before them. So if every role-model they encounter plays to a traditional stereotype, the child will learn the lesson that that stereotype is one they need to fit. Instead I am keen to expose my child to plenty of people who defy stereotypes and make unconventional choices. With any luck, the child will see each person as a unique individual rather than as a representative of a category of people. The obvious starting point is children’s toys – it makes no sense that building blocks and train sets are skewed towards boys while dolls and playhouses are skewed towards girls. I hope to offer a wide array to my kids and let them choose what they wish.

I want my child to learn, eventually, that it is not the centre of the universe. In the early years a child is surrounded by people who dote over it, care for its every whim and ensure it is as happy for as much of the time as is possible. It is understandable that a child expects this attention to go on forever, but it is important to discover later in life that your needs must be balanced against everyone else’s. Some people never learn that lesson. It seems valuable for kids to learn that they must wait their turn, show consideration for others and sometimes miss out on what they want. We know the ability of a child to defer gratification is a great indicator of success later on in life, so it seems worthwhile to encourage that skill from early on.

I want my child to have a strong sense of self. External validation may be reassuring, but it ultimately leaves you at the whim of other people, which can lead to foolish decisions later in life. Far better is to have a strong sense of purpose and confidence in your own judgement, which means you can happily stand apart from the crowd if the circumstances make that the wisest option. There’s a lot of talk about the importance of children having a circle of friends, and yes, I would undoubtedly want that for my child. But I want my child to seek friends for companionship rather than just to fit in or to have their worth affirmed. As I child I didn’t have too many friends, but I never felt lonely because I was very relaxed in my own company. Over time that sense of self-assurance helped me build quality connections with other people. I would dearly wish that for my own offspring.

None of these parenting ideas are revolutionary, I know, but I’m keen to remember them once the reality of parenting sets in. I hope that they provide a roadmap as I head off on the parenting journey. The landscape may not always look like it does on the map, but it’s nice to know where I’m heading and I’ve got a plan on how to get there. And lots of people to reach out to when things don’t go to plan.

Sunday, January 24, 2016

What I've learned so far

Last week I passed the half-way mark of my scheduled eight rounds of chemotherapy. It’s been three months since I was diagnosed with cancer, but the time seems to have passed quicker.

Here are a few things I’ve learned along the way:

  1. It gets better. When I look back I realise just how far I’ve progressed in my treatment. In late October I was a mess – a giant tumour in my upper chest, a blood clot in my left arm, a massive bruise on my right abdomen, a nasty swelling in my head and difficulty breathing. At the time I thought that would be my experience of cancer. But all those symptoms and complications eased, the chemo started to work and things fell into place. Now some days I feel so well and energetic I need to remind myself I have the disease. Having that bad experience early on makes me realise how much better things are now, and how much worse they could be. Those bad days may yet return, but for now I can enjoy the contrast. And beyond the physical symptoms, the medical tests show we’re making good progress.
  2. Everyone has a cancer story. Given that more than 125,000 Australians are diagnosed with cancer each year, it shouldn’t be a surprise that so many people can talk about their direct experience with the disease – either they’ve had it, or a family member has, or a colleague, or a friend. Many of the stories are of survival, and life afterwards, but others are of battles fought valiantly. It’s a great comfort to hear vivid accounts from people who have been through it, which make me feel like I’m being welcomed into a club, albeit one I didn’t want to join.
  3. The sick person gets to set the tone. Knowing what to say to someone who is facing disease is really tough. Knowing what tone to strike is also tricky. I’ve learned from recent experience that people comforting the sick match their tone to the sick person. So if I’m feeling morose and self-pitying, the person I’m talking to will appear suitably glum. But if I’m positive and upbeat, they’ll laugh and take it easy. Given I’d rather hang around at a café than a funeral parlour, I usually go for the second option.
  4. Familiarity breeds knowledge. When this whole caper started, I knew little about cancer and the drugs that treat it. The doctors would casually throw around terminology and I’d be lost. But now I feel like something of an expert. The array of drugs and infusions whose names early on confused me are now clear in my mind, and I can banter with the best of them about the merits of Rituximab, Cyclophosphamide and Pegfilgrastim. Throw in some of the non-cancer ailments I’ve come to experience – pneumothorax, subcutaneous emphysema and peripheral neuropathy – and I feel like something of a medico. The explanations help with understanding, but it’s the repeated exposure that makes it stick. Now, where’s my stethoscope?
  5. Regular faces make it easier. I really like my cancer nurses. They are kind and knowledgeable and always (appear) pleased to see me when I head to the cancer centre a couple of times a week for a check-up or a blood test or a wound dressing. But the best part is that there is the same great team of people every time I visit. They know me, they know my family and they know my medical history. It makes it easy to deal with people with whom you have already developed a rapport rather than having to start afresh each time. I suspect this is one of the strengths of having fewer patients – I understand big-city cancer centres can be rather impersonal experiences. That would be tough.
  6. Team effort. This whole experience has been made so much easier by having my wife, Melanie, by my side. Clearly this is not the way we wanted to go through our first pregnancy, but we’ve made the most of it. Between us we’ve managed to get all the vital things done around the house, managed to keep up with our steady list of medical appointments and provided the quality emotional support that makes both cancer and pregnancy so much easier to grapple with. Facing this alone would be much tougher.
  7. Sure beats waxing. Everyone knows about the effect chemotherapy can have on the hair on your head. Less remarked upon is the effect it has on the rest of the body, which goes much the same way. At the risk of revealing more than I ought to, I admit to enjoying the smoothness of my belly and legs now that the thin wisps of downy hair have disappeared there. The skin now has a baby-like quality. After holding on tight for a while, my eyebrows and eyelashes seem to be disappearing as well, which is rather less welcome because it makes my head look like a full moon and I fear hippies may start dancing near me.
  8. Don’t fight it. Early on I was determined to maintain my regular schedule as much as possible, using a business-as-usual approach to downplay in my mind the significance of what I was enduring. But my body soon made clear that wouldn’t work. When I’m feeling strong in the recovery phase, I can live life as normal. But when I’m part way through a cycle of treatment, and my body is exhausted to the point where a pack of wild horses would give up on raising me from my bed and return to the stables perplexed at the task they’d been given, I’ve gotta listen to the signals. Denying the realities of my body will leave me feeling terrible and make it tougher to get my strength back from the next cycle. Better to just go with the flow.
  9. Use the time wisely. The body may be weary, but the mind is still lively. This might be the only time in a decade or more when I get a chance for prolonged periods of rest (we have a child on the way, remember). It seems a shame to spend that time watching crap on YouTube or browsing the internet. So I’ve been determined to use my time reading things I might not otherwise find the time to read. I’ve finally got around to Christos Tsiolkas’s “The Slap” (a middle-class hissy fit), after reading George Megalogenis’s “Australia’s Second Chance” (compelling case for more migration), Allan Behm’s “No, Minister” (slightly earnest account of life in a ministerial office) and Elizabeth Pisani’s “Indonesia Etc.” (left me yearning to head back). Beyond that I’ve also been wading through the pregnancy and childrearing books on our self – filled with so much contradictory advice it seems best just to trust my instincts … and let the kid fend for itself.
  10. Help people help. Since diagnosis many people have come forward offering to help. At first I was thankful for all the goodwill, but a little overwhelmed. I’ve learned to give a bit of guidance to nudge people towards things that really make life easier for Melanie and I. For my family it’s been regular visits to help make sure the household’s on track. For my parents-in-law it’s been preparing the house for the new baby. For my work colleagues it’s been giving me the flexibility I need to get on with the job during treatment. For friends nearby, visits at home or at a café have helped keep my sane. For people at a distance, phone calls and the occasional hamper of goodies have been most welcome. I’m lucky to have them all, and I’m glad I’ve found ways to harness the good vibes.

So that’s what I’ve learned so far. It’s been a challenging three months, but a time when I’ve discovered physical and emotional resilience I wasn’t sure I had. If the second half of treatment goes as well as the first, I’ll be in remission by April. And if it doesn’t, the battle will go on a little longer. Either way, I know I can handle whatever comes my way.

Cytotoxic Sharp... that's me.

Wednesday, January 06, 2016

This too shall pass

At about 5:30 on Tuesday afternoon, I could feel my concentration lagging. My body was tired, my breathing laboured, the feeling was disappearing from the tips of my fingers and my mouth felt like I’d been chewing on Alfoil.

It felt wonderful. Why? Because I anticipated the timing with such precision and was so well aware of what my body was doing that none of it was a surprise. After all, this was day six of the latest round of cancer treatment, and so as a veteran of four cycles of chemotherapy I knew what to expect
and could face it head on.

Each day in the first part of a chemo cycle seems to have its own side-effects “signature”, with a distinctive mix of aches and pains. Given the precision in timing for the delivery of the various drugs that make up the regimen I’m receiving (R-EPOCH-DA, for those playing at home), it should be no surprise that the side-effects are quite precise as well. It’s strangely comforting to reconnect with each day on the three-weekly cycle, like an old friend you haven’t seen in a while. Perhaps it’s only comforting because I know it will soon disappear in the distance and not be seen and felt for another three weeks.

The physical symptoms are as bad as they have been for the previous three rounds, but now I know what I’m in for. In the past, when I’d feel a tingling feeling in my fingers I’d be a little panicked that it would be there long-term. Now I have the wisdom of experience to know that it will pass within a few days and I just need to be patient.

I feel like I’m doing a few rounds on the Scenic Railway rollercoaster at Luna Park. The first time you zip around the circuit is terrifying because of the extremity of the dips and the difficulty in anticipating them. But the edge comes off the second time around, because you know what’s coming. Go around enough times and you end up like the ride operator standing upright in the middle of the train looking bored.

The flipside of knowing when I’ll feel terrible is that I know have a better understanding of when I’ll feel good. For about 10 days in each three weeks I can now make plans in firm confidence that I’ll be able to fulfil them, rather than having to attach a disclaimer every time I make arrangements. It gives me a much greater sense of control over my life.

A big part of my strategy to get through cancer was to retain as much normality as possible in my life. I didn’t want to spend six months exclusively as a cancer patient, battling disease while putting everything else on hold. I wanted to go out, to work, to cook, to pull my weight around the house. These things give me a sense of purpose and meaning. For a while they were proving difficult, but now I have greater awareness of my treatment I am able to do them. I’d go mad otherwise.

Making things a little easier over recent weeks has been some medical successes that have indicated real progress. In mid-December I undertook a CT scan that showed the tumour in my mediastinum had shrunk significantly since it was first detected two months earlier. This was a huge relief and showed the chemo was working. This smaller tumour meant there was now space in my upper body to put in place a Hickman’s drug delivery line in my right chest, the conventional spot that had been ruled out earlier for me because of the tightness. So after one procedure to remove the femoral line in my lower body and another to insert one in my upper body, I am closer to being a conventional cancer patient – although less of a novelty in the ward.

This shift has seemingly brought to an end the problems that were bedevilling my early in the treatment. The distractions – from blood clots to bruises to infection scares and chest tightness – all seem to have subsided. This ability to now focus on the main game, beating the cancer itself, is a great relief.

For now, I’m laying low at home. Fatigue has set in and I can’t muster the energy to move much further than the couch. But I know it will only last a few days and then I’ll be back on my feet. This too shall pass.

After a while you know what's coming up. (Image courtesy of Luna Park)

Sunday, December 27, 2015

Considering the alternatives

I’m pretty sceptical when it comes to unconventional medical treatments. I take the approach best expressed by Tim Minchin – “Do you know what they call alternative medicine that’s been proved to work? Medicine.”

When it comes to cancer, alternative medicine abounds. A range of concoctions purport to offer an easy pathway to greater longevity and better health. Charlatan Belle Gibson made outrageous claims about beating cancer merely through “nutrition, patience, determination and love – as well as vitamin and Ayurvedic treatments, craniosacral therapy, and a whole lot of other treatments”. The US-based Cancer Tutor website claims that purple grape juice and carrot-and-beet juice are both “excellent cancer treatments with very high cure rates”. Advocates of Gerson Therapy say that cancer can be cured with 13 glasses of juice a day, a range of supplements and coffee enemas. Really.

Cancer patients are particularly vulnerable to the lure of such quackery. I think part of the reason lies in the fact the conventional medical treatment is so toxic and arduous. To learn that the path to better health mapped out by conventional medicine involves rounds of chemotherapy and radiotherapy, with cells both innocuous and malicious coming under attack as the body becomes a battleground, is confronting. It is daunting to know that debilitating side-effects lie ahead. Another route to the same destination that avoids the side-effects is understandably tempting.

The existential threat posed by cancer adds to the allure of alternatives. After all, if your life it at stake, it seems foolish to not explore all the options. Many people diagnosed with cancer will ultimately die from the disease even with the best in conventional medicine, leading to the false and naïve assumption that they might have been saved had they embraced the alternatives.

Much of the support among patients for alternative medicines comes from people who have an ingrained cynicism towards the medical establishment and who view following its edicts as acts of conformity. For them, embracing alternative medicine is a statement of identity; they choose their cancer treatment in the same way they might buy their groceries. With chemotherapy drugs expensive and major pharmaceutical companies driving development, opting for an unscientific alternative to chemo becomes a political statement of rebellion.

The formula most medical experts adopt is that patients can try alternative treatments if they want, but they should continue with conventional medicine and tell their treating doctor to make sure the alternative treatment doesn’t interfere. If the alternative is doing no harm, then why discourage a patient from trying? That approach makes a lot of sense.

For all their failings, alternative treatments can have some benefit, though not in the way their advocates say. If you’re like me and you are doubtful of the power of alternative treatments, they will do no good. But if you’re someone who believes strongly in the power of those treatments, they might provide some marginal benefit thanks to the placebo effect. The sense of hope that treatment might give the patient could, in and of itself, benefit the patient if it lifts their mood, gives them comfort or in some other way improves their disposition.

There’s plenty of conjecture about the extent to which psychological factors can impact on the progress of physical ailments. While scientifically testing the impact is notoriously difficult, lived experience suggests there is some physical benefit at the margins from a more positive psychological outlook.

(This also reflects my thinking on the power of prayer. Since I was diagnosed, some people have told me they are praying for me. I don’t believe in a higher power, and so I do not think those prayers per se will have any impact on my health. But it is comforting to hear from various people that I am in their thoughts, and the kindness of these people lifts my mood. But my mood is also lifted from other people that get in touch to send good wishes rather than prayers. That improvement in mood has some incremental positive impact on my health, but of course it is not the “praying” that brings the benefit but the “telling me”. As for patients themselves praying, there’s no benefit for a non-believer like me, but there may well be for a person of faith.)

The greatest problem is among patients who discard conventional medicine altogether and rely exclusively on alternative medicine for treatment. Too many people in that position have lost their lives relying on alternative medicine while cancer, or other diseases, ravaged their bodies. While you can never say for sure that conventional medicine could have helped, it seems likely in many cases.

Tasty, but not a cure for cancer. (Image courtesy of Pixabay)
Why do people turn away from conventional medicine? Cancer Australia notes on its website: “One large study has found there is a significant association between the use of complementary and alternative therapies by cancer patients and needs unmet by conventional medicine, helplessness and lower scores on emotional and social functioning scales.” The Skeptic’s Dictionary also has an excellent list of 11 reasons why alternative health care is so popular. So there are things that doctors can do to encourage patients to embrace conventional rather than alternative medicine.

For starters, give patients the information they need in a format they can understand. The early period after diagnosis is one in which the patient is given great volumes of information, but much of it is technical and laden in jargon. The material can be intimidating for a patient and prompt them to fear that they will receive a treatment that may do them harm. In my case, an excellent hour-long session with a cancer nurse early on gave me a no-nonsense guide to what was coming up and a chance to ask questions. For some later clinical decisions, though, I was left in the dark or given information that was difficult to understand. Informed consent is impossible in these conditions, and a patient is more likely to consider alternatives.

Which gets to the matter of choice. Many people with cancer have a feeling of helplessness because of the disease harming their body. But I suspect many also feel helpless that they have little agency over the treatment they receive. The path of chemotherapy and radiotherapy can be presented as the only option rather than the best option, leaving the patient feeling they have no choice but to proceed. While this may lead to early patient compliance, it may also lead to later rebellion and a search for alternatives. Better for the patient to choose to go down the path rather than feel forced onto it.

Doctors might also benefit from being frank with their patients about their outlook in the absence of treatment, which is essentially what relying exclusively on alternative treatments amounts to. To hear the prospects of death or a low quality of life in the absence of treatment makes conventional treatment, even with its side-effects, more palatable. Remaining naïve to the consequences of inaction can leave a person more willing to let their desire for a treatment that reflects their identity overwhelm their survival instinct.

Ultimately, of course, patients should be free to choose the path they think is right for them, including alternative medicine if they wish. But they should be able to do so in full possession of the facts about the success rates and the side-effects. Unless advocates of alternative medicine are willing to subject their treatments to scientific rigour – which, following the Tim Minchin line, would allow successful treatments to enter conventional medicine – they should be treated with scepticism. 

Advocates who hide painful truths from those they are seeking to lure are doing themselves and patients no favours.

Wednesday, December 09, 2015

So I'm going to be a dad

“So guess what? I’m not the only one in this couple with a mysterious growth inside me!”

That’s how I considered telling my parents and parents-in-law that we were expecting a child at the same time I was battling cancer. But that’s not how it happened.

Instead I was lying in my hospital bed with my wife Melanie holding my hand. I was still groggy as I recovered from a biopsy and had a great big tube coming out my side to drain my chest. Days earlier a mysterious lump had been found in my upper chest, and while we waited to find out what it was we all feared the worst.

It happened to be my birthday and I was happily receiving gifts from the people gathered around the bed. It came time for Melanie to give me a present, and she handed me one that she’d very carefully selected – a book, “So You’re Going to Be a Dad”.

I enthusiastically unwrapped it and held it up for my parents and parents-in-law to see. As I began to utter the magical words waves of emotion lashed the shores of my mind. “It’s been a pretty eventful few days,” I said, my voice rising an octave. “Well, Melanie and I have some more news for you. We’re going to have…” My sobs overwhelmed the end of the sentence.

After some frantic pointing at the book and at Melanie’s belly the meaning of my curtailed revelation was clear. With infectiousness suitable for a hospital, we all quickly teared up and exchanged hugs. Even my father, not known for public displays of emotion at places other than the Southern Stand of the MCG, was soon in need of a box of tissues.

Melanie and I knew we were expecting a baby since before my health troubles emerged in mid-October but told few people until the first anniversary of our wedding on Monday. It’s a relief to finally share the information, meaning we no longer need to keep a big secret amid all the tumult.

So what does it mean to have a pregnancy and a cancer battle going on in the one household at the same time?

For starters, we’ve got to be careful. When you take chemo drugs, and for a week after, the patient is cytotoxic, meaning their secretions are poisonous (literally “toxic to cells”). Most other people have robust enough immune systems to cope with small amounts of cytotoxic exposure, and the only concern is significant spills of bodily fluid. But for a developing foetus, cytotoxicity can do damage to development, particularly during the first trimester. (I started chemotherapy when Mel was 11 weeks pregnant.)

After speaking to several doctors on the oncology and obstetrics sides, we decided to take a very cautious approach.

One recurring piece of advice was to use separate toilets – but our modest one-bedroom home has just one. To the rescue came Mel’s dad Keith, a fine father-in-law and an excellent home handyman. He quickly formulated a plan to construct a temporary dunny on our veranda. Within days he’d got the materials he needed at Bunnings and set to work. Before long we had a thunderbox to be proud of, fully flushing, walled in on all sides, and decorated with a tasteful landscape scene on the door. Our toilet problem had been solved.

Then there are all the other ways two people might incidentally pollute each other. The night sweats that had become common for me meant we opted for separate beds, with me sleeping in the living room. The shower was another potential hot spot, so Mel agreed to use other facilities available to her. We invested in a set of cutlery and crockery, with a distinctive design, so that we could each have our own utensils.

Six weeks after we started, it seems to be working pretty well. We’ve got into a happy rhythm at home and we know what we can and can’t do. For about one week in three, when the chemo drugs are flushed out of my system, things get back to normal, and for the rest of the time we just get on with it.

There’s not a lot of research about people in our circumstances. It is hard to know the exact risk posed to a foetus from exposure to cytotoxic chemicals, because it doesn’t happen very often. But the downside of being too cavalier seems far greater than the downside of being too cautious, so we are being careful. I would hate to be haunted by thoughts of “if only” if something unexpected were to happen. Still, some recent research showed that women who were diagnosed with breast cancer while they were pregnant could still receive chemotherapy beyond the first trimester without harming the foetus, giving us greater confidence.

My chemo and Mel’s pregnancy has had some similar effects on our bodies. Both of us are frequently and profoundly tired. Some days in the past few weeks when we get home it’s been a race to see who gets the couch and who gets the bed for a good lie down. The hard work each of our bodies is doing in response to the new arrival is sapping our energy and leaving little room for discretionary effort. We are also frequent visitors to the loo as our bladders struggle with the extra pressure – lucky we’ve got two (toilets that is, but it also applies to bladders).

Then there are the dietary changes. Both a foetus and a cancer patient during the neutropenic phase have a weak immune system and so are unable to fight off things that are innocuous for most others. So soft cheeses are out, as are unpeeled fruit, raw eggs, cold meats, some seafood and unwashed salads. Having the two of us both face the same restrictions on diet does make shopping and cooking a whole lot easier, although the things we do end up preparing are unlikely to land us a spot on MasterChef. (Though a MasterChef Preggers and Cancer special would be worth watching.)

Perhaps the toughest part is that neither of us are equipped to play the caring role we wish we could play. The advice for pregnant women is to seek support from their partners, and cancer patients get told a similar thing. Put the two of us together, though, and there’s a surfeit of care needed but a deficit available. Which is why we’re so lucky to draw on support from the aforementioned parents and parents-in-law, as well as dozens of others who have lent a hand.

If things go to plan I’ll finish my chemo treatment and enter remission in April, and Melanie will give birth in May. There’s a gap of just a couple of weeks, and if my treatment runs long or the baby comes early, we’ll have an awkward overlap. Tough if it happens, but we’ll cope. Also tough will be the few months beforehand, when the advanced state of Mel’s pregnancy might leave her exhausted, while the cumulative effect of my chemo will drain me of energy. All while we seek to prepare our house for the new arrival. Oh joy.

A few people have commented that the impending arrival of a child has given me extra incentive to beat the disease. Maybe. Even without a child on the way I had a strong will to live. There were too many interesting things out there to experience to allow me to shuffle into the sunset at 33 without feeling like I’d missed out. The prospect of becoming a parent – perhaps the most exhilarating things one can possibly experience – has given me something profound to look forward to.

But now I’m not just responsible for me. There’s a 17-week old foetus in Melanie’s belly that is depending partly on us to raise it, to feed it, to protect it and to tell it lame jokes. I have an obligation to be in this child’s life and help shape its identity. To lose the struggle against my disease would not just be a personal tragedy but would mean I did not fulfil my responsibility to another person. That is something I could not bear.

And so we battle on. A few weeks back we reached a milestone, when the mysterious growth inside Mel’s body grew larger than the mysterious growth in mine. As the months pass I look forward to seeing Mel’s expand, kicking playfully against her abdomen, as mine slowly shrinks. And by the time hers is ready to leave her body, I hope that mine has left my body as well. I can’t wait for the three of us to stare into the future, happy, healthy and together.

A few subtle differences between our wedding day and our first anniversary on Monday.

Monday, November 30, 2015

Floored by fatigue

“I was so exhausted I had to lie down for 20 minutes after thinking about brushing my teeth.”

Chemo patients often have war stories about their battles with fatigue – played out in the style of the Four Yorkshiremen – and that’s my contribution.

The first round of chemo left me largely unscathed, but this past week the second round has hit me hard. The all-encompassing body-and-mind fatigue that has left me whiling away that hours in bed has been more debilitating than anything I have experienced before.

The complete lack of physical energy makes it difficult to perform even the most basic tasks, and the absence of mental energy makes creative thought difficult to achieve. Sleep provides little relief, but nothing else does either.

The numbing fatigue turns small achievements into major victories. After a quarter hour psyching myself up to empty the dishwasher, I rewarded this act of domestic heroism with a half-hour rest.

The medical advice to us chemo patients is to stay active, even when we feel crippled by fatigue. A few times last week I jumped on the walking machine on our veranda, only to find myself puffing within minutes and quietly cursing the experts and those who brought their advice to my attention.

My less-tired self sees the clear wisdom in the advice, but in the depths of fatigue it is hard to be appreciative, let alone to follow it.

One consequence of resting impassively for so long is that small aches and pains that would normally be ignored make a big impact on the mind. Twinges of muscles, sore joint and shallow breathing, all of which are standard fare for a chemo patient, become mental fixations that are hard to ignore. After a while I craved distractions to take my mind off the fatigue and everything else what was competing for my attention.

There are a few fun things to do when the heavy clouds set in. It's a great chance to watch some quality television I might otherwise miss - The Beautiful Lie has been my favourite in recent weeks - and to read things that flow easily - that'd be The Mandarin Code. And the gift of The 1000 Dot-to-Dot Book has proven therapeutic (adult colouring-in for blokes, I reckon). And there was a James Rizzi jigsaw puzzle along the way, although I was a spectator to my mother's puzzling through much of it.

Still, I better get used to it. The experts say the fatigue is an inevitable part of chemo treatment, and can persist long after the treatment itself has finished.

The process of dose adjustment means the chemo drugs will continue to intensify. Dose adjustment means incremental increases in the potency of the chemo drugs each round, accompanied by regular blood tests, until it’s clear we’ve reached the limit of what my body can take, and then continuing at that level, or a little less. That way I get the most potent chemotherapy my body can tolerate.

The idea makes a lot of sense, but in practice it means at some point in the chemo I will debilitated by fatigue, or nausea, or infection vulnerability – or at least the blood test results that indicate those things. The only way to avoid reaching that point is have the stamina to last eight incrementally increasing rounds without reaching my limit. It would be a remarkable feat, and right now I don’t feel too remarkable.

The past day I’ve had a bit more energy and have managed to go to hospital and work. Hopefully this indicates I’ve passed the worst of this round. But I have no doubt more exhaustion lies ahead.
Mother and son. After that I needed a good lie down.