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February 5, 2021

How I choose to Live with “Lulu”—my Lymphoma.

February 4th was World Cancer Day.

Lymphoma Australia was at the forefront of the action—informing, challenging and, most importantly, encouraging me to think and reflect about what lymphoma means to me.

First, the informing. The statistics are mind-blowing. 19 million people are diagnosed with cancer each year. 19 million! 150,000 of those are in Australia. Then there is the incredible variety of cancers: lymphoma alone has around 80 strains. Suddenly, I feel insignificant, and not at all special.

To paraphrase an oft-heard saying: it’s not the cancer that defines me, it’s what I do with it.

So what do I do with it? Well, nothing much if I’m being honest. I simply carry on, for the most part, as if the cancer wasn’t there. Many people find this admirable; they talk of my wonderful positive attitude, my courage and my stoicism. I don’t deserve these plaudits. Up until now, I have simply lived the only way I know how. I have given little thought to how I might live positively with an illness.

This is where the challenge comes into the picture. Lymphoma Australia have created the “Get Your Legs Out” challenge. You can run, walk, cycle, jump, or anything else that involves body, muscles, and stamina. I have chosen to swim.

Part of my plan for 2021 was to regain the strength that a lymphoma flare-up caused me to lose in 2020. Swimming is part of that plan, so I’m not exactly stepping out of my comfort zone. But until now, it has been a selfish plan, and selfishness has no place in a rightly lived life.

So far, I have not undertaken to do anything that really pushes me—80 lengths of my (small) pool to be swum in the first 11 days of March—but thanks to the incredible generosity of so many of my friends, that is about to change. The Mycause page set a $500 target, which I reached within a few hours, so I’m about to set myself new targets. For every $500 I raise, I will double my swim. I may have to swim every day to match the generosity of my friends, but it feels good and right.

I’m a musician, and thanks to COVID-19 I am only occasionally required to work. This leaves me a lot of time to learn to live effectively with my lymphoma. Looking at those statistics is a stark reminder that I am one of the lucky ones. Five years on from my diagnosis, and probably 16 years on from the first symptoms, I am still alive and mostly living a completely normal life. There are varying degrees of disability that come with my condition (Sezary Syndrome), so yesterday brought home to me the ingratitude I have been showing by living my normal life instead of my best life.

So what is my best life? I’m not entirely sure yet, and I suspect it will be a destination I never quite reach. Here are my decisions so far:

First, I will not ignore or neglect my lymphoma. I am naming her Lulu to encourage me to always consider her. The most obvious things Lulu needs are good quality nutrition (but not too much of it), exercise, and purpose.

Secondly, I will write every day. Sometimes my writing will be inspired by Lulu, and sometimes not. She tells me that her voice needs to be heard, and sharing her wisdom is a fine way to ensure that writing does not become a purely selfish occupation for me.

Thirdly, I have realised that Lulu needs downtime and sleep. Constant 24/7 striving, or partying, does not suit or serve her. Today, I spent a couple of hours watching the tennis, instead of penning this article. Lulu enjoyed it, but I found it hard to turn the guilt away from my door. Learning not to be always achieving is a big one for me, but living a quieter, more contemplative life will be an achievement in its own right.

Lastly, yesterday has taught me not to compare. The world is in the midst of a cancer epidemic, as well as a Covid pandemic. Both these things seem to be conspiring to give us a message. We need to change the way we live, not by comparing ourselves to others (either individually or nationally), but by going deep within ourselves to find our own path of right-living.

Taking care of the environment, myself, and Lulu is a positive response to lymphoma. Doing the best I can for others, as well as for myself, is a way of showing gratitude and ensuring that the work of my doctors and pharmacists is not wasted.

Lulu’s final gift is to keep me in the present. There is no point in either scouring my past to figure out how I invited her into my world, or in fearing that my future may contain pain and incapacity. That would be to throw away the gift of the well-being that I enjoy today. For now, Lulu and I coexist quite happily.

I used to wonder what was the point in having special days—Happiness Day, World Loneliness, Day for Muscular Dystrophy and so many more. I know now. Dedicated days can inspire ordinary people like me to become a force for good in the world. That is right-living.

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