In 2013, aged 53, I was diagnosed with the blood cancer, multiple myeloma. Myeloma is a cancer of the plasma cells, a kind of white blood cell that fights infection. This cancer is called a remitting/recurring cancer which means if you achieve remission after treatment, the cancer will eventually come back and need further treatment, until it stops responding. Hence it is incurable.
The Emotional Impact of Cancer
A diagnosis of cancer is devastating in itself, but living long-term with cancer in this way brings with it an enormous emotional strain. My book The Feeling of Cancer shines a light on the emotional impact as I navigate diagnosis, prognosis, treatment, remission and relapse. Cancer affects every area of your life – your health, your relationships, your finances – but also the lives of those who love you. Diagnosis is always a shock. Your quality of everyday life becomes mired in treatments, side effects and the effects of the cancer itself.
Then there’s the ever-constant anxiety. Tests, scans, meetings, talking to others about your cancer, and the fear playing on your mind of treatments not working. Even when in remission, depression and hopelessness can creep into your life along with grief at all that’s been lost.
My life has changed in so many ways and I have had to learn to prioritize my self-care.
What is self-care?
Considering there is so much advice around for people with cancer, not least how you should eat and exercise, there is little about how you might attend to your emotional vulnerability. Searching for ways to manage this not long after my diagnosis, I was inspired by a friend at a hospice support group for people with life-limiting illness. As we talked over coffee, I asked how she coped with every day life with a diagnosis of stage 4 cancer and she told me something that day stayed with me: she had worked out her own personal self-care plan and she worked hard to do something just for herself every single day. You have to learn to put yourself first was her message to me.
Self-care revolves around being kind to yourself and is a very personal thing. What makes you feel nurtured and supports your emotional wellness will be deeply connected to the kind of person you are. For my friend it was getting two gorgeous kittens and designing a small garden of flowers she loved. For me, from the earliest days, music became central to my self-care.
Music as self-care
Music has always been a part of my life. I have always sung in choirs since childhood and play several instruments, but I hadn’t really thought of music as a form of self-care until my cancer diagnosis.
Music can be not just calming but also uplifting or comforting. Listening to music is a way of being with your feelings when you are overwhelmed and confused. It can help you clarify how you feel and what you might need. There were countless ways in which I purposefully used music to help myself cope over the years.
Music as a distraction
Over my months of chemotherapy I found I didn’t feel like talking to others and also because of my thin veins, the sessions were often fraught for the nurses and painful and distressing for me. I came to dread them. So I took to making Spotify playlists of some of my favourite albums from my teenage years, along with choral music I had sung that conjured up great memories. I sat for hours in chemotherapy wards with my headphones on exploring another world in my head and tried to make the music my focus and lose myself in it.
Music as an escape
Insomnia was a medication side effect, and still is. Music is there for me as an oasis of calm in the wee small hours when wide awake, my thoughts become troubled and go to dark places.
I never go to hospital now without my trusty portable transistor radio. I’ve had two stem cell transplants, which are highly intensive medical procedures and necessitate many days in an isolation room. Leaving my radio playing quietly in the room has given me something meaningful to occupy my mind when I’ve been very sick indeed. In one hospital the nurses sat outside my door to write up their notes as they found the music so relaxing.
Music as sanctuary
I always need to rest and conserve my energy, still being on maintenance medication these days. Sitting on my spot on the sofa with classical music playing on my radio has become my retreat at home. Music is a good friend to me, it keeps me company, demands nothing of me and creates moments of respite for me.
It’s not just a sanctuary for me though. In the early days, when I need a lot of looking after and I said to my husband “I’m going to listen to my music now” he knew I was retreating to do something I needed for myself. It gave him some time to himself too. Caregivers also need space.
Music as connection
At times my illness has isolated me from the things I love the most. However, now that I am in remission again and the pandemic has subsided enough for me to sing with my choir, I bask in the sound we make together as our voices blend and harmonise. But it’s singing nursery rhymes and playing shakers and tambourines with my small grandchildren that makes me happier than anything else. These moments are spiritual experiences that replenish my soul.
The Feeling of Cancer by Sandra Russell, RRP $35.00