Jo Jones

When Jo began experiencing shortness of breath and heavy menstrual bleeding, she put the symptoms down to a number of different causes, including general fitness and fibroids. So, it came as a shock when, in November 2016, she was diagnosed with acute lymphoblastic leukaemia (ALL).

On Friday 11th November 2016, I knew precious little about leukaemia. By the evening of Saturday 12th November, I’d been diagnosed and admitted to the Royal Marsden Cancer Hospital in Sutton, Surrey.

So how did that happen? I’d been feeling pretty run down for a few weeks, mainly, I thought, due to unrelated problems with my lower back that I’d been experiencing for years. The Sunday prior to diagnosis I had a nosebleed; in itself unusual for me, and it lasted for about 10 minutes, which seemed quite a long time. It stopped, I thought nothing more of it.

I hadn’t been on the school run much due to my back problems and I’d had a cold, so that week, when I was walking home from school drop off, I put my shortness of breath down to being a bit unfit and under the weather.

On the Friday evening I fell asleep watching ‘Graham Norton’ on the TV. When I woke up my trousers were soaked through. I was on day three of my period, I thought I’d just experienced menstrual flooding, not that I’d had it before, but aged 46 it was possible to be experiencing some peri-menopausal symptoms. I went to bed but didn’t sleep. I had to keep changing sanitary protection at least every hour or so. I was so worried that in the middle of the night I rang NHS 111. A nurse called me back, said it was probably fibroids, but she made me an appointment to see the emergency doctor the next morning.

By morning I felt exhausted, and frankly more than a little fed up that I might have fibroids or be facing a new world of really heavy periods. How little did I know! A neighbour kindly agreed to look after the children for us and my husband drove me to the doctor, based at Epsom General Hospital. The doctor gave me a prescription and told me to make an appointment to see my GP on Monday morning. His potentially lifesaving comment was, ‘It’s possible you’re anaemic. As it’s so early, it’ll probably be quiet in A&E so you could pop in there for a test, or leave it until Monday, it’s up to you.’ Thankfully, my husband and I agreed it was worth a go.

A&E was relatively quiet. I went through triage and was taken into the main department and put in a side room. On later visits we were always put in the same room and were told that’s where they put cancer patients as being in a room protects them from possible infection in a way a curtained bay can’t. Looking back, I expect the triage nurse already had a hunch.

Throughout the course of the day I had blood tests that led to a blood transfusion. I thought of my friends on a girlie day out drinking prosecco and felt a little hard done by! An internal exploratory showed nothing of gynaecological note. The rest is a bit of a blur. All I can really remember is a doctor coming in wearing a red, orange and white striped jumper. She leant over me and asked if I knew what was going on. I said no to which she took me by the hand and replied, ‘We think you’ve got leukaemia, we’re just working out what to do with you.’ I wailed ‘No’ and started to cry. She left the room, shortly to return to say someone had looked at my blood under a microscope in another hospital and they thought I had a type of leukaemia with a high success rate. My husband and I sat there in utter shock; we later agreed it was the worst day of our lives.

Luckily for me there was a bed available at the Royal Marsden in Sutton. My husband was sent home to get an overnight bag for me. He had time to say a quick hello to the children, who were by now on a sleepover with different neighbours, returning just in time as an ambulance crew came to transport us to Sutton. They were so kind and gentle with me. They made the need to travel with blue lights sound like it was just for fun, to get me through the Saturday evening traffic; of course, that wasn’t the real reason. Leaving me in the care of the Marsden the ambulance crew looked genuinely sad and they wished me well.

That evening I was seen by a consultant and a registrar who explained the immediate first steps. Fibroids and heavy periods suddenly seemed like vastly favourable options. By Monday I knew I had a different kind of leukaemia with less favourable odds, and I had started steroids in readiness for my first chemotherapy dose in seven days’ time. I left hospital for the first time six weeks later, just the beginning of what became 12 months of intensive chemo, followed by another two years of maintenance treatment.

I often wonder what would have happened if the emergency GP hadn’t suggested the anaemia test, or if we’d decided to leave it until Monday. Leukaemia has vague symptoms, making it difficult to diagnose. I will be forever grateful to the NHS team in Epsom General that day who, despite the pressure their workload brings, came up with the correct answer, and quite possibly saved my life!

Leukaemia: I wasn’t born yesterday

As part of our report, we undertook a survey of over 1,300 leukaemia patients, to uncover the inequalities that are impacting on cancer survival and patient experience.

Read More