Claire has been living with HER2-positive advanced breast cancer since 2016; since her cancer progressed she has been processing the fears that inevitably accompany this. Claire’s story is one of overcoming her fears by facing them, and taking control.
Here's BCAC’s report of Claire’s talk at the recent ABC7 international advanced breast cancer conference:
Overcoming fear: Don’t lose the joy of living in the fear of dying
Claire Myerson, ABC Patient and Patient Advocate, Breast Cancer Now, UK
Claire has been living with HER2-positive advanced breast cancer (ABC) since 2016; since her cancer progressed she has been processing the fears that inevitably accompany this. Claire’s story is one of overcoming her fears by facing them, and taking control.
Claire’s four main fears are:
• Dying itself
• Her wishes not being respected
• Running out of time to sort things
• Losing the joy of living in the fear of dying.
Overcoming the fear of dying
Fear of dying includes fear of pain, immobility and needing care from others. Ways to address this include getting medical advice on the reality of what may happen as the cancer progresses further, voicing your fears to a counsellor, and having a practical plan in place for palliative care.
Making sure your wishes are being respected
“It is so important to me to know when to stop”. Claire’s treatment choices after 6 years of living with ABC have become extremely conservative. When the time comes, “I want to be gliding into land very gently on a grassy airstrip, not crashing and burning”.
To ensure her wishes are respected, Claire has made sure everyone around her knows her wishes by:
• Ongoing discussion with her medical team
• Documenting her wishes
• Openly discussion her thoughts with friends and family.
Don’t run out of time to sort things
Like most people with ABC, Claire’s family have been living with the diagnosis too. To make things as easy as possible for them, the practical things to sort include:
Admin: passwords, will, bank accounts. This also includes managing social media accounts and carefully considering what is published on them, because these remain on the internet indefinitely.
Funeral plan: including music, flowers, who should be invited – and sometimes crossing people off the list of who should be invited! Writing things down and adding to it over time brings peace and calm.
Leaving lasting memories: memory boxes, videos, letters and photos. This situation is an opportunity to reflect and pass on a legacy into the future, and can help you share with others who you are, your values and your approach to cancer.
Don’t lose the joy of living in the fear of dying!
Living well for as long as possible is the main goal. Having a good relationship with your oncologist will help with this – including allowing treatment holidays for travel or other important events. Where family and friends are concerned, only spend time with the people you really care about and, importantly, don’t end a meeting without making a definite plan to catch up again. Other advice includes taking risks, losing your inhibitions and checking in with yourself to make sure you are living life to the maximum. Claire ended with a call to action – don’t leave your best underwear in the drawer! We only have one life, and if we aren’t out there living it, we should be.
Marion Barnett
29 November 2023
