Being brave and letting go
This is the fifth in a series of occasional posts about my experience of living with incurable cancer. It focuses on my efforts over the last six months to be braver at facing my diagnosis, and what I’m now letting go of.
For the earlier parts of my story, see
- a life turned upside down (June 2023)
- starting to live with cancer (September 2023)
- from crisis to grief (June 2024)
- the power of music (August 2024)
Two years on
It’s now approaching two years since I was diagnosed with incurable bowel cancer. Since then I’ve been through 35 cycles of chemotherapy across six blocks of treatment. I’ve also enjoyed five breaks from treatment — cramming in short holidays, theatre trips and concerts, meals out and more.
A new ‘normal’
Over the last two years, life has settled into a fairly predictable new rhythm, albeit with the constant uncertainty that comes with the potential for treatment to be delayed, the fear of a scan result revealing further spread, or of infection (‘any infection can be life threatening’, said my consultant once, when I was trying to work out if I was being too cautious, or not cautious enough, in avoiding certain activities).
In one way this has been helpful. It has allowed us all to get on with life.
But the increasing familiarity and routine has also allowed us to focus on the routines of treatment and the never ending admin involved in juggling medical appointments, jobs, family life and social life. Rather than face what the cancer really means. What’s coming down the track.
The trigger
In my last post, I wrote about my intense experience at a music summer school, where music unlocked all the emotions that I had been suppressing (TLDR: I spent much of the week crying).
This experience scared me a little, and convinced me that I needed to stop ignoring my emotions and instead face them and see if I could process them.
I described this to myself and then to others as deciding to be brave.
Working with a coach
I started working with a coach, who created the space for me to start exploring my feelings around my diagnosis. I tend to process things in my head, intellectually. She helped me to connect with my body, and therefore with my emotions.
We talked about how it feels to lose control, and the fear of death.
But we also talked about going towards what I love, about how time and health are like precious gold (how do you want to spend them?), and about how to trust myself.
Feeling braver
I began to feel braver.
I carefully planned an appointment with my oncologist and my husband at which we asked questions that we hadn’t asked before:
- Once this treatment stops working, how many other treatments are there to try?
- How is my cancer likely to progress? Where might it go next? How might I die?
Because I’d prepared properly, it wasn’t too difficult. I’d thought ahead about how I might feel and react and how to respond to that. And we’d planned what we wanted to do afterwards (pop into Maggie’s for a chat, then lunch and an exhibition).
I also felt ready to start connecting with other people with advanced cancer. Up to this point I was scared about what I might see reflected back at me.
I attended a retreat at the Penny Brohn Centre with nine other women with incurable cancer.
I joined a six week online programme with Shine, with six other people in their 20s, 30s and 40s with incurable cancer.
What I saw and experienced was life and joy and resilience and connection.
And a few weeks ago I attended a dance retreat with Move Dance Feel. As a musician, I’ve always loved to watch dance but I’ve not danced much myself. I was curious to see whether and how it would help me to process my emotions. It was a powerful experience. I cried lots, but I also felt great release and joy.
A big decision
Over Christmas and the New Year, we took our three week winter break at Catalyst (where I am a co-Director). I began to realise that I needed to stop working. I have rarely before known in my body that a decision was so right. I am far more used to weighing things up intellectually and logically. But this time I knew that the decision had been made.
That didn’t make it easy. I cried lots and it was a couple of weeks before I was ready to tell anyone how I felt. But when I told my family and then my colleagues they all understood, and they all knew it was right for me.
Letting go
My career has meant a huge amount to me. It has been a hugely important part of my identity. It has brought me fulfilment and purpose. It has made me feel good about myself. It has been the source of many important relationships and a sense of community. Letting go of this will be hard.
It’s also hard because I know it is one of many things that I will have to let go of as my cancer journey continues towards its inevitable end.
So I’m making sure that I mark this transition — because it’s important, and because it might help me to learn how to let go of other things in the future. I’m working with a grief tender to design a small ceremony or ritual with some of the people who have been most important to me in this part of my life. I wish to honour my career and legacy, mark this moment of transition and to deeply thank those who have made my working life so meaningful. My hope is for a love-filled and joyous occasion that also welcomes sadness and grief, should it arise.
What’s next
As I write, I’ve just finished my sixth block of treatment and am looking forward to a month off, including short trips to Barcelona and Istanbul. After that I may be having surgery, or going back onto treatment.
Whichever it is, spring is here and there are many things I want to do — more time with family and friends, more time in nature, more culture, more new experiences.
It won’t be easy, but I’m looking forward with hope and anticipation.
