Life with Leukaemia: 'After a misdiagnosis, we were fighting leukaemia with hot water bottles and paracetamol'

A Bishop's Stortford family's story of navigating the emotional, physical and financial challenges of living with blood cancer, by Amy Gannon

Sitting in the doctors' waiting room, I can see posters of breast cancer awareness, prostate cancer, bowel cancer. Endless awareness posters. But something is missing. Blood cancer. The forgotten fifth.

The fifth most prominent cancer and the UK's third biggest cancer killer, and yet from awareness through to diagnosis, information, care and support, people living with blood cancer are less likely to see their needs fully met than patients suffering from other cancers.

I cannot help but think as I look around this waiting room that if I had seen a poster with the symptoms of blood cancer two years earlier, we might be in a very different position.

Awareness is key, knowledge is power. An early diagnosis can make all the difference. I cannot change our past but hopefully I can improve someone's future and that is what has motivated me to write about my family's experience of living with leukaemia.

For two years my fiancé Joel Atkinson, our little girl Isla and I were living alongside leukaemia completely unaware. After a misdiagnosis of arthritis, we were fighting cancer with hot water bottles and paracetamol. Completely unknown to us, Joel, 30 years young, was battling a very rare form of blood cancer.

Joel is an electrician, and all his initial symptoms were blamed on having a very active job. The back and joint pain were always put down to his occupation.

After a year and a half of asking for help and swapping doctors' surgery, Joel was finally referred to a back specialist and misdiagnosed with arthritis.

We never accepted this. I knew this pain wasn't normal. He couldn't work or socialise. Everyday activities were a struggle.

Battling with the challenges that the Covid-19 pandemic brought to get his doctors to listen was nothing short of impossible. I demanded an MRI for Joel and directly questioned his diagnosis, fighting constantly for further tests and help.

One morning we reached the end of the unknown suffering in the most dramatic and traumatic of ways. We were thrown into a very new and very frightening beginning. The start of our cancer journey.

On the day we were due to go and collect the results from the MRI scan I went into our bedroom to wake Joel. His lips were blue, he was in agony, and we rushed him to A&E.

Many cases of blood cancer are diagnosed in a state of emergency like Joel's experience. Blood cancer charities and sufferers of blood cancer are working hard to change this narrative.

The power of sharing experiences is not to be underestimated and Leukaemia Care UK have launched a #spotleukaemia campaign which is based around promoting the symptoms via blood cancer sufferers sharing their stories to help people achieve a faster diagnosis.

In 24 hours, our whole world was turned upside down. Nothing felt safe or secure any more, my faith was shaken. Tomorrow suddenly wasn't promised.

I sat by his side all day. I walked out of the automatic doors of the hospital without the man I arrived with and I crumbled.

I opened the car door and pictured my little girl's face, trying to find the words that would explain to her why Daddy wasn't coming home and why our life from now on would never be the same.

Joel was diagnosed with ALL – acute lymphoblastic leukaemia – and began chemotherapy in hospital, having not seen his little girl for several months.

Unfortunately, he had an adverse reaction to a chemotherapy drug causing pancreatitis and a second admission to intensive care in a matter of months.

Walking through the corridors of intensive care is like an out-of-body experience, I felt a massive disconnect from reality.

I couldn't believe the love of my life was going through this. All I could do was sit and hold his hand, talk to him and play voice notes from his daughter and pray.

It was like he was frozen in time. I was there when he was woken from his sedation and held his hand through everything.

He defied odds and came through the toughest of battles.

Joel was admitted to an oncology ward, where he caught Covid-19 after a week. He was asymptomatic but tested positive for 53 days.

During this time he was in constant isolation and chemotherapy stopped. Finally, after 138 days in hospital, I bought the love of my life, the father of my child, back to where he belongs – home.

As a family we are fighting leukaemia from our home with the outstanding support of Addenbrooke's Hospital in Cambridge and our family and friends. The future is unknown.

In writing this article I hope to be a voice for others navigating the challenges and isolation that living alongside cancer can bring.

No one knows your own body better than you. If you feel something isn't right don't give up.

The NHS is amazing, but it is not perfect. Doctors use a series of select questions to achieve a diagnosis and certain answers to those questions lead them down certain paths.

The pathway of cancer was never considered for Joel, his age bracket was not considered high risk for cancer. Perhaps if we had known the symptoms of blood cancer specifically we may have suggested this ourselves. Awareness is so important.

Cancer does not discriminate; you are never too young.