Psychologist and author, Sophie Sabbage, has just celebrated her fifth ‘cancer-versary’, after initially being given just months to live. Her diagnosis has taken her to the north and south poles of her resilience and courage, but she has emerged out the other side and is thriving with lung cancer.

“I had more brain tumours than my oncologist could count. They found tumours in my lungs, lymph nodes, spine, ribs and more in my brain than they could count. That was my darkest hour. It brought me to my knees. I was on my knees with grief, more than fear.

I am not afraid of dying. I’m afraid of leaving my kid to grow up without me, and that grief walks with me every day because I don’t know how long I have with her.

Grief is a hard thing to deal with. As a psychologist, I have a toolkit for dealing with fear. Shortly after I was diagnosed, I remember walking out to the horses in a nearby field. I stood in the field and screamed ‘NO!‘. Then, I walked home saying ‘I have cancer. Cancer does not have me.‘ I said it over and over and over again and, by the time I was home, I was in complete acceptance of my situation.

I have cancer. Cancer does not have me

The moment my doctors told me I was dying, I started dying. Within two or three days, I was coughing up blood. I couldn’t breathe. I couldn’t get up the stairs, pain ricocheted down my spine. Prior to diagnosis, I had only experienced one symptom, for one hour – a sharp pain in my back.

I said to my husband ‘They’ve told me I’m going to die, so I’m dying. I need to get that belief out my head, as surely as I need to treat the tumours in my body.

I decided early on that I needed to become an expert in my own disease and I educated myself very quickly. I remember my oncologist telling me that I needed to have urgent, full brain radiation – I was losing my eye sight and my language – and that he had booked me in for three days times.

My intuitive red light started flashing at this point and I said ‘No, we’re not going to do that just yet’. I didn’t know why I was saying no, but it was a huge moment for me. It was the moment I took control again.

There was another moment shortly afterwards when I regained control. I got an appointment for my first radiotherapy session. I looked at the date and I knew that my kid had something going on at school. I remember saying to myself if I fit my life into cancer, then I’m going to die very soon. But if I fit cancer into my life, I might have a life – even if it’s only six months.

I apologised to the nurse and said I’m not free that day. At the time, I didn’t know how controversial this was, and I certainly don’t make a habit of it, but it was so psychologically important for me because I took my power back that day.

Treatments

I’ve still never had full brain radiation. I have had targeted radiotherapy to 27 brain tumours in one 8-hour session. I broke the record in that hospital! I’ve had targeted radiotherapy to a tumour on my C3 vertebrae.

I’ve just had more targeted radiotherapy to my brain because I’ve had more brain mets – round four of brain mets! I’ve also had two targeted therapies. I was on afatinib and now I’m on osimertinib – double dose – blasted into my brain. Oh, and I’ve had brain surgery too!

I’ve had a lot of treatments for the tumours, but nobody ever said ‘Would you like to speak to somebody? Would you like counselling?‘ It blew my mind that I was given leaflets for helping deal with the side effects of chemo, what to expect from radiotherapy, and how to apply for blue badge parking. But nothing to help mentally process what I had just been told. I found that absolutely shocking.

So many things go through your head when you’re told you have cancer. I’m going to die. I’m going to suffer terribly. My life is over. I’m going to go bald. It’s my fault. I’m going to be vomiting in the bathroom for the rest of my life. Maybe some of that will turn out to be true, but we literally terrify ourselves with what we think. If we don’t take hold of our fear as patients, our fear will take hold us. It will run the show and it will make our decisions for us. We can’t see clearly when we are scared.

A transformative time

It’s been brutal at times and, of course, terrifying. My daughter was only four when I was diagnosed and it seemed like I wasn’t going to get to raise her.

It’s taken me to the north and south poles of my resilience, courage and humanity. But it’s also been the most transformative, creative, productive, life-enhancing, wondrous few years of my entire life.

When your life is on the line, you pick up the dreams that you’ve left on the shelf along the way. From the age of 10, I wanted to be a writer. My first job after university was at the BBC. I was a copywriter. I used to write the blurbs on the back of Blackadder videos! Then I fell in love with the transformation work, and I put writing down.

Cancer has given me that vocation again. I’ve written two Sunday Times best selling non-fiction books. The Cancer Whisperer has been translated into 12 different languages.

I love to write. It’s such a joy in my life. I find it healing and the fact that it has also made a difference to a lot of people is such a privilege.

Sophie shared her story as part of our Follow my Lead campaign for Lung Cancer Awareness Month 2019. Follow my Lead aims to improve conversations around lung cancer and help those affected to address and deal with a diagnosis.