Sus, 62 years old, self-employed and has two adult children and a grandchild.
Sus has received twelve chemotherapy treatments for breast cancer in 2024 and has chosen to share her experiences with using cold caps at OUH. The process has given her both hope and challenges – but most of all it has been a struggle to maintain control over her life during a difficult time.
CONSIDERATIONS BEFORE TREATMENT
When I was first told I was going to start chemo, I immediately asked about alternatives to hair loss. The answer from healthcare professionals was often the same: "Don't worry about it - cut your hair off and the transition to a wig will be easier to manage."
But for me, it has been crucial to keep my hair throughout the process. Losing my hair felt like losing a part of my identity. So I took matters into my own hands and started researching the options. That's when I came across Rapunzel and cold caps, which I decided to try. Even though the government doesn't provide subsidies for cold caps, I was happy to pay for it myself.
Using cold caps has given me more than just hope. It has given me control. Control over who I want to invite into my illness, and control over how I want to appear.
HAIR AND IDENTITY
With hair on my head, I'm still Sus. Most people in my circle don't know that I've been undergoing chemotherapy. As a self-employed person, it has meant a lot to me to be able to continue my work without my appearance revealing my illness. Without hair, the focus would easily shift from my words to my appearance – and I would be seen as a cancer patient before anything else.
Maintaining my hair is therefore not just about the outside, but also about my inner well-being. At a time when I had very little control, the cold caps gave me a sense of normalcy and strength.
CHALLENGES WITH THE SYSTEM
Unfortunately, my journey has not been without its bumps in the road. From the beginning, I was met with resistance from healthcare professionals. I have experienced comments such as:
- "Your hair is falling out anyway."
- "Cold caps are a waste of time."
- "This space is reserved for patients."
- "You clearly don't understand how things work."
It has been frustrating and stressful to have to fight to use cold caps – especially when it requires an hour of preparation before the treatment itself. I have even been outright scolded by staff for taking up space, even when there have been available rooms.
NEED FOR UNDERSTANDING AND SUPPORT
It is my opinion that patients should be allowed to freely choose between cold caps and wigs – and that healthcare professionals should respect and support this choice. There should be a basic understanding that for some patients, hair can be an important part of their well-being and identity.
As a patient, you are already in an extremely vulnerable situation. I need the nurse to be positive and supportive, or at least keep their skepticism to themselves. No one should feel belittled or thwarted when they try to take control of their own illness.
A VICTORY FOR THE HAIR - AND FOR MYSELF
By the way, I can happily say that I have kept my hair throughout the entire process. The cold caps have made a huge difference for me – not only in terms of appearance, but also psychologically. Waking up and seeing my hair in the mirror has been a daily reminder that I am still myself, despite the cancer.
A FUTURE WITH HOPE
For me, cold caps are not just about hair. They are about hope. Hope that I can get through a difficult time with strength, and that I can maintain a part of myself in the midst of all the hardships. I dream of a future where cold caps are equal to wigs in the public system – so that all patients can have the opportunity to choose what suits them best.
I hope my story can inspire others to make the choices that feel right for them – and maybe create a greater understanding of the needs and experiences of cold cap patients.
Thank you for reading.
The name is fictitious, as she wished to remain anonymous. If you would like to get in touch with Sus, you are welcome to contact us, and we can arrange the contact.