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

4 comments:

Katie Macartney said...

Beautifully written! Wonderful insights. Thanks Mel.

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