My wife died of cancer – I’ll never stop fighting for change

Susan died last year – but I’ll never stop fighting for her (Picture: Tristan Loraine)

‘We need to see Susan as soon as possible.’ 

Those were the words from a doctor that changed my life. 

It was the summer of 2013, my wife Susan had recently been to see our GP because she had a small mark on her left breast, but with no lump and no pain. 

But in the previous few months it had become slightly redder. Although she’d been given a mammogram and ultrasound which were clear, the oncologist had arranged for her to have a biopsy and an MRI scan. 

I was shocked, but managed to get my words together on the phone, ‘Does Susan have cancer?’ 

‘I’m really sorry, but she does,’ he replied. 

Susan was so positive when I told her, she simply said that we needed to get on top of it(Picture: Tristan Loraine)

After years of campaigning and invasive treatments, Susan died last year – but I’ll never stop fighting for her.

I asked him not to ring our house as I wanted to go home immediately and tell her. I said I would then bring her to the hospital to see the medical team. 

Susan was so positive when I told her, she simply said that we needed to get on top of it and everything would be okay. It felt surreal. She was fit, healthy and full of life, only 50.

I couldn’t process how this was happening. 

She would then be diagnosed with Invasive Lobular Breast Cancer (ILC) which has a far higher chance of returning within five or more years, compared to more common types of breast cancer. 

We struggled to understand how a mammogram and ultrasound had not detected the cancer. Doctors informed us that ILC is very difficult to see with mammograms and ultrasound as the cancer cells can grow in lines rather than masses. 

She was ill-health retired, and never flew again (Picture: Susan Loraine)

It meant we would always be looking over our shoulders.

But this diagnosis was not a shock.

Doctors had predicted Susan, an airline pilot, was at risk of getting cancer when she was 34. With concerns over the air she was breathing on flights, she collapsed in 1997. 

She was ill-health retired, and never flew again. 

Susan had become massively sensitised to chemicals and struggled to concentrate. Her doctors had carried out testing and said she had a higher risk of getting cancer despite not having any genetic markers. 

Susan undertook eight different types of treatment. The side effects were brutal, she had ringing in her ears on one treatment type which frustrated her but she stayed positive. 

When they put her on oral chemotherapy she was vomiting and struggled with sleep, but was determined to keep going on walks to raise awareness. 

When they put her on oral chemotherapy she was vomiting and struggled with sleep, but was determined to keep going(Picture: Tristan Loraine)

Susan and I had met back in 2001, when I was a health and safety representative for my pilot union. I heard about the work she did on air quality issues for cabin crew and pilots like us. 

We were married 20 years after first connecting and just two months after that she was diagnosed. 

Susan’s diagnosis motivated us to create the Lobular Moon Shot Project in 2023 to get ILC  the research funding it vitally needs. 

On July 14 last year, I met Wes Streeting, five days after Susan died aged 63. But to date he hasn’t done anything to help resolve this problem.

I feel incredibly proud to advocate for these ladies (Picture: Tristan Loraine)

The government told us to go to The National Institute for Health and Care Research to apply for funding but the NIHR doesn’t fund the basic biology research that we need.

I’ve created the documentary ‘Our Journey With Lobular Breast Cancer’ which will be aired on Together TV this Wednesday. 

In the last few minutes of my wife’s life I told her that I would continue the campaign for a specific treatment for ILC. 

I feel incredibly proud to advocate for these ladies most of whom I will never meet. But they and their families deserve to have a fighting chance.

I will dedicate my life to resolving this problem, so no one has to go through the pain and loss Susan and I did.

Do you have a story you’d like to share? Get in touch by emailing [email protected]. 

Share your views in the comments below.

Comments Add as preferred source