Getting a Diagnosis

April 2015:   Nobody owns you …

I imagine it's absolute hell for many people getting a diagnosis, it certainly was for me. And then finding out it's cancer...

Mine started with breathlessness. The GP sent me for a chest X-ray. The next day the duty GP phoned and asked me to come in urgently. If they ever call you, the chances are you're in trouble.

What happened next was my first experience of just how badly things can go wrong in the NHS. A different GP saw me. On their system was an X-ray report showing I had a collapsed lung needing urgent hospital treatment. But he sent me home with antibiotics. I have no idea how he managed to make such an appalling mistake.

The very great majority of NHS staff are truly wonderful and I've had some incredible care over the years from many really excellent doctors and nurses. But be aware, sometimes things go wrong. Have someone with you whenever possible to help you understand what is happening.

I struggled for a few more days and then saw a different GP who actually read the X-ray report and sent me straight to hospital. It took an unbelievable 24 hours to see a Doctor, then another 24 hours for 4.5 litres of fluid to be drained from the lining of my right lung. The fluid turned out to be Chylothorax, leaking from my lymphatic system. It filled the container in the photo more than once.

They didn't even want to give me a scan. They wanted to arrange for one as an outpatient. I should've refused to leave; how naive I was; not any more. But before the scan appointment, I ended up back in hospital having another four litres of fluid drained from the same lung - it had just filled back up - plus about three litres from my abdomen. After a very firm exchange with an A&E consultant (I was starting to learn) I finally got a scan.

I don't know why the NHS does this, but to deliver the worst news possible seems to need five people around your bed. As soon as I saw one had a Macmillan badge I knew what was coming. Cancer.

Up until that point nobody is really responsible for you. Nobody knows what is wrong with you and - crucially - nobody really seems to be responsible for finding out. After that, things improved.

A bone marrow biopsy came next and my diagnosis was follicular lymphoma, an incurable non-Hodgkins's variant, known as follicular because of the shapes of the cancer cells as they grow. Lymphoma is a so called 'blood cancer', where abnormal white blood cells gather in the lymph nodes causing them to swell.

Don't get me wrong about specialist cancer nurses, they are amazing, I have the most wonderful one here called Mandy who looks after me brilliantly and she is absolutely fantastic. A Macmillan badge though is just quite a shock when you first see it come your way.