Julia underwent several unexpected hospital treatments when she had breast cancer. She learned how to let herself be cared for, and how to better care for others.
My diagnosis was worse than originally thought
Recently, a book I read prompted me to think about what I want to be like for others by remembering a time someone showed care for me. The point of the exercise wasn’t to focus on the specific person or situation, but what they were like and how it made me feel.
I thought back to when I had breast cancer.
I was diagnosed with breast cancer in 2016. I was too young for routine mammograms, but I had noticed a lump. I thought it was probably a cyst, but over the course of two months it grew bigger and felt strange, so I got it checked out. I was diagnosed with DCIS, an early form of breast cancer.
At first, I felt reassured by my surgeon that all would be well following just one surgery and radiotherapy. However, following the operation, a grade 3, HER2 positive cancer was found. It was a real shock to then be told that I would need further surgery, chemotherapy (FEC-T) and targeted therapy (Herceptin) as well.
I was shocked at how unwell I became
I remember waking up with tears on my pillow while I waited for my chemotherapy to begin. Once it started, I found myself in survival mode. I was fit and healthy when I started treatment and I was shocked at how unwell I became.
I had many emergency trips and admissions to hospital, often in the middle of the night, and was diagnosed with severe neutropenic sepsis twice.
During one of these admissions, I recall a doctor sitting next to my bed asking about how I felt, listening and helping me sit up to take sips of water through a straw. I remember a nurse who helped make me more comfortable.
The nurse used clippers on my hair. It was the most wonderful feeling to be rid of the hair that was making my scalp so tender as it was falling out. Then the nurse helped me use a commode, wash and change into some clean pyjamas and brush my teeth before tucking me in with a heat pad to help the pain.
I accepted and appreciated the care I was given
The medical staff were attentive, genuine and empathetic. I remember feeling enveloped by their warmth.
The caring actions of that doctor and that nurse helped heal me then and as I look back, now too. I remember how very strange it was to find myself in that situation, a role reversal.
As a family carer and a professional I was used to being the caregiver. I was used to being a capable and strong person, not feeling weak and vulnerable.
However, it was through those experiences as a care recipient when I lost so much – my dignity, looks, independence and strength – that I truly learned about care and the difference care makes.
Friends and family came to my aid
Before leaving hospital following my first admission with severe neutropenic sepsis, a dietitian, an occupational therapist and a physiotherapist visited me. A doctor also chatted with me about my need for care and helped me work out how my needs could be met. We had to balance the needs of everyone in the family.
My husband carried out most of my care, but I stayed with my parents for a few days every chemotherapy cycle to give him a break. It was strange to be bathed by my mother at the age of 48.
Friends also helped in all sorts of practical ways, for example gardening, lifts to hospital and doing the ironing to help lessen the load.
Help can be found in so many places
It can be hard to accept help, but most people want to give it. I would say it’s not a sign of weakness to accept help but a sign of strength. I have also learned that allowing other people to help you is an act of grace towards them.
If you don’t have family and friends who can help, then perhaps speak to your healthcare team who may be able to make suggestions and refer you to support services.
I was referred to a local charity where I received complementary therapies and counselling. National breast cancer charities such as Breast Cancer Now and Breast Cancer Haven provide so many services, as do charities that support cancer patients more generally such as Macmillan and Penny Brohn.
Some of the services these charities offer are more accessible now they have moved online in response to the pandemic.
We need to care for ourselves
I always try to be hopeful and positive but life can be tough and sometimes I weep. I think it’s important to let ourselves do that, to be vulnerable. My Christian faith in a loving God has been a comfort throughout my life.
As a result of my experiences, I now feel able to reach out and ask others for help when I need it, and I still help others as much as possible too. And to anyone else dealing with breast cancer, I would say don’t compare your experiences to anyone else’s. We are all different, we have different backgrounds and different circumstances. We have different diagnoses and different treatments. We have different bodies and respond to treatments differently. Cut yourself some slack and be kind to yourself and others.
Asking for help isn't always easy, but we want to encourage people to reach out if they need it. Whether you have a current or previous diagnosis, or want to help someone who does, we have plenty of resources to support you.