Diagnosis & Treatment

CANCER TYPE
Multiple Myeloma
AGE DIAGNOSED
53
Medical Center
Auckland and North Shore Hospitals - New Zealand
Surgeon
Oncologist
Clinical Trials
Medical Treatment
Chemotherapy
Immunotherapy
Stem cell
Details of Treatment
6 months of chemo followed by a stem cell transplant. 3 1/2 years remission - on relapse 6 further months of chemo and second stem cell transplant. Currently in remission with 4 1/2 years on immunotherapy drug.
Medication During Treatment
2013 - Standard Cyclophosphamide/Bortisomab/Dex 3 months, then Thalidomide added for 3 months. 2018 - same protocol. 2019 - Lenalidomide ongoing.
Alternative Therapies During Treatment
Traditional Chinese Medicine
Naturopath
Therapy (saw a traditional therapist)
Meditation
Sound healing / frequency
Acupuncture
Yoga
Reiki
Massage
Ketogenic Diet
No sugar
No alcohol
Reflexology
WHAT CANCER TAUGHT ME
I never expected to write a book, but cancer has given me a sense of purpose to help others by being honest and authentic about the emotional challenges cancer brings.
Supplements
WHAt helped me during treatment
Burning essential oils helped with nausea. Music has been my support, both listening and singing in a choir.
Favorite Quote
"In both listening to others and telling our own stories, we become who we are." - Arthur W. Frank, The Wounded Storyteller: Body, Illness and Ethics.
Advice for Others
Self care is now your main focus. Really tuning into the things that are meaningful and letting go of those that are not is the key to emotional wellbeing. The road ahead can be frightening, overwhelming and traumatic at times, but acknowledge these feelings and notice when there are small moments of joy. You cannot feel the joy and contentment without feeling the devastation and grief. All these feelings are part of who we are and so are important information to form the guidance for what we need at any given time. Emotions provide our map towards rediscovering what cancer threatens to steal from us: our identity.

My Story

10 years ago, I was 53 with a thriving psychotherapy practice on the North Shore of Auckland when pain in my upper back took me to the doctor and various complementary health practitioners. I was also very tired and put all of this down to being menopausal. After a very painful cramp in my back late one night, an x-ray the next day showed a fracture in my neck and I was diagnosed with the incurable blood cancer multiple myeloma and began intensive chemotherapy the next day. The prognosis at that time was an overall survival of 3-5 years. Myeloma is a remitting/recurring cancer which eventually mutates until it is untreatable.

I was in shock and huge grief followed as I had to give up work and pass on all my clients. I began to feel like my whole identity was being swallowed up with the relentless and invasive treatment. Vulnerable, overwhelmed, anxious and often isolated, I endured the six months of chemo, three different agents and a fourth added as it wasn’t working as well as it could, followed by a stem cell transplant. Deep down I knew that having access to my emotional world was the key to returning to myself, but I was just in survival mode.

I continually asked myself “how do I live my life with this diagnosis?”. I did a mindfulness course and later on a course on gratitude and have attended two Buddhist retreats over the years, all as ways of helping myself to manage. But it was when I turned to books, as I always have done, searching for reading that would help me understand my overwhelming and confusing feelings, to make some sense of my emotional quagmire, I realised that no-one was really writing authentically about the feelings. I began to write.

After my first year of treatment, six months of chemo and a stem cell transplant and a life-threatening pneumonia, I was in remission for over 3 years. I never lost sight of reality though, and cashed in a small pension to pay for a wonderful five-week holiday with my husband in Italy

I returned and began a Masters in Creative Writing. I have an hons degree in English Lit as well as a psychotherapy Masters and it was the bringing together of all my expertise. But only a few weeks into the course I relapsed and had to go back into treatment. I had to leave the course to begin further treatment.

I was devastated. Six more months of chemo later and a second stem cell transplant were all much more gruelling this time. I was lucky to received a relatively new, funded drug, which I have now been taking for 4 ½ years and has kept me in remission. Future treatments are unclear and depend on funding or clinical trials being available.

I returned to the Masters and completed my book.  Not only that I was Dean’s listed and achieved a First Class Hons.

THE FEELING OF CANCER was finally published and I am currently enjoying giving talks and presentations to various groups. The book is not a traditional memoir as it begins with my diagnosis and is a deep dive into my personal emotional landscape, taking my internal world as its main focus.

Writing case studies was part of my profession along with helping people understand and manage complex feeling states. And so, I used myself as a kind of case study. As such the narrative foregrounds my deeply-felt feelings, moving through diagnosis, periods of intensive treatment, remission and eventual relapse. It's an honest exploration, full of insights into the many overwhelming events at a time like this.

The story focuses on my uncertain, vulnerable emotional states as I struggle through trauma, fear and anxiety, self-hatred, grief, loss, isolation, depression and loss of independence – learning the importance of gratitude, love and self-compassion in the process.  

The Feeling of Cancer is a story that captures something fundamental and unique about facing your own mortality and living your day-to-day life with a life-limiting illness. Ultimately it shows that emotional health is possible whatever the harrowing and tragic circumstances, and further some possible ways to get there.

Before I had cancer, I never envisaged writing a book, but writing and presenting my ideas to others has given me a sense of purpose and meaning.

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