Ed J
Posted by

My CML story

Ed J
Posted by
25 Apr 2014

I was diagnosed with chronic myeloid leukaemia in 2006 at the age of 34.

We had the Ofsted inspectors in and I was doing an A-level PE lesson outside when I started to feel like I had a dead leg. Underneath my tracksuit I could feel a golf-ball size swelling at the side of my knee, but I couldn’t remember knocking my leg or doing anything that might have given me a bruise. After the lesson I went into the office and mentioned it to some of my PE colleagues. They advised me to go to the doctor’s surgery. It was just over the road so I went that afternoon. 

I did some blood tests and was told they’d be ready in a week. The next day we had a rugby match after school. I came home late and there were about 10 missed calls from my doctor saying to call immediately. The surgery was shut by that time so I had to wait until the next day. The next morning the doctor phoned me and said get yourself to the hospital’s haematology department ASAP. I’d been told to ask for a Dr White at the hospital. When I arrived I was told he was in the Macmillan unit. The word Macmillan immediately translated as cancer and all sorts of things went through my head.

When I found Dr White he started by apologising that I’d found out I had some sort of cancer before they’d had a chance to speak to me. Then he told me I had chronic myeloid leukaemia. I just felt shell-shocked. I’d heard of leukaemia and I knew about Ian Botham’s fundraising walks and Gary Lineker’s child. I didn’t know much about my particular type. I sat there listening and thinking “Well they’ve got to be right, I’ve got it so I’ll just have to get on with it.

The first time I started to feel any emotion was when I had to phone my mum to explain what was going on. I left the hospital and remembered that I’d switched my phone off, so I turned the phone back on and there was a message from mum saying, “The hospital phoned, what’s happening?” I called her back and I broke down.

Dr White stressed time was of the essence. It was 10.30am on a Friday, St Patrick’s Day and they had to get everything done before the weekend. I had to get from Milton Keynes to Hammersmith Hospital in London, which has a specialist leukaemia wing, before midday. A colleague at Denbigh School had a non-teaching timetable that Friday and offered to drive me so I rushed back to school. We left school about 11am and reached Hammersmith just after midday.

At the hospital they sat me down on a blood transfusion machine for a couple of hours and were finally able to properly discuss my condition. The treatment started immediately and I was off work for a month. I was one of the trialists for a new drug which reduced the need for chemotherapy. Before the pills came along the normal course of treatment was a bone marrow transplant. They tend to use that as a last resort now. If the pills fail then they think about bone marrow transplants. I returned to work full-time in September and continued as a PE teacher for about a year. But running around, refereeing things like football matches proved too much. Eventually I went to see the head Mrs Parker and asked if there was a position elsewhere in the school.

My second subject is maths and I also love music so they gave me a half and half timetable mix of maths and music. After a while the head of maths Miss Millard requested I teach maths full time. A few days after I was diagnosed our school basketball team was in the county basketball finals and the head of PE Mr Monaghan invited me to go along and watch even though I had just started my sick-leave.

On the mini bus driving to the finals he mentioned the idea of fundraising. I knew fundraiser concerts were a good way of making money so I got to work sorting out a concert for that summer. It featured a lot of acts and my own band, Breathless, headlined. We’ve been holding the concert every year ever since. So far we’ve raised over £21,000 through the concerts, sponsored walks, and my own solo album. The total in 2013 was in the top 2% on justgiving.

Fundraising has helped so much. I find that if I give myself something to work towards in the medium-long term, even in my low moments when I’m feeling quite down I still have something to look forward to. I’m 42 years-old now and it’s been eight years since my diagnosis. With the way I’m being treated remission is not an option, the condition is managed with medication. The doctors tell me that with my numbers – the blood count and the leukaemia count – on this course of treatment, no one has ever deteriorated. It’s all looking good for me.

Like any charity, LLR depends on volunteers and supporters. Fundraising with LLR has given me a chance to meet new people and also give myself a lift during my treatment. Get involved yourselves, it could be the best thing you ever do!

Comments

28.04.2014

Hi Ed, thank you so much for sharing this. It's great to hear from a fellow CML patient that is getting on with life and showing blood cancer who's boss. Your fundraising exploits are incredible! What's your secret?! Seriously, thank you so much for everything you're doing to help us beat blood cancer and all the best in the future. You'll have to set up a fundraising page now that you've got an LLR account and get blogging about your fundraising challenges!

Anonymous
28.04.2014

Hi Andy
Thanks for your comment. Yep, hopefully this is the first of several blogs for the website - and having introduced myself with this one I aim to focus in on the fundraising side of things a lot more in the future.