'I have no desire to go to India or China or whatever'

Myeloma is one of the fastest growing cancers in the western world. In the UK, the number of reported cases has doubled in 30 years and it remains incurable. Yet 97% of us don't know what it is. Until 15 months ago, Phil Kelly didn't either. 

I've had myeloma 'officially' since April 2006 but the symptoms go back to 2005. I was aged 41 then and I had a lot of back pain and was very tired. I put it down to overwork. My job involved a lot of travelling.

At the end of 2005, I went to see the GP. I was about a stone overweight and he suggested more exercise. He put me on a 6-8 week exercise programme including swimming and walking. But there was no improvement. The physiotherapist I was seeing couldn't understand why so she told me to go back to the GP. He referred me on to a back specialist and I was given an appointment for mid-March.

Then one day I felt something go in my back as I lifted my son Dan out of bed. I had to lie down and I couldn't get up again. I now know I'd fractured my spine. But it meant I couldn't physically make the appointment with the back specialist. I was losing movement in my leg and when I collapsed in the bedroom, my wife Julie called an ambulance.

At casualty a succession of doctors came to see me. I thought I'd damaged my spinal cord. I was worried but at the same time a little relieved to finally be in hospital and have someone taking notice of me.

In the middle of the night I was transferred to specialist hospital where they could do an MRI scan.

I still remember the looks on the faces of the technicians after the scan. That's when I knew it was serious.

I was vomiting blood as a result of the painkillers and when the consultant came in with scan, he showed me this mushy pile where my vertebrae should have been. The next thing was a back surgeon talking about putting in a steel cage around the broken vertebrae. He told me I was looking at something 'nasty to very nasty'.

Fortunately my stomach problems weren't bad enough to prevent the surgery so three days later I had it. I woke up on April Fools Day 2006 with a huge hole in my side. Ten days later the back surgeon told me I had myeloma. Julie had been surfing the net so it was a word I was expecting to hear but that didn't take away the shock.

I had what I think was a mild out of body experience, I found myself thinking very rationally about the treatment options as if it was happening to someone else. I asked about the prognosis, the survival rates and so on. It was only later that the emotional side of it hit me. I woke up in the middle of the night in tears about not seeing my children grow-up. Dan is five and my daughter Alex is nine. They were terrible nights.

The bone biopsy when they took a bit of bone marrow to analyse it was the most horrendous thing — they stuck the world's hugest needle into my hip. Luckily I was dosed up on morphine. Chemotherapy began the next day with very high dose steroid tablets. Then three weeks after the op, the 'real' chemo began. I had a Hickman line attached so they wouldn't have to keep injecting me. Basically they attach a tube to a vein through your chest and give you the drugs that way.

At this point the doctors were very gloomy. They were very clear that the disease was incurable and I'd read on the net that you could expect to live 2-5 years. This was never said explicitly.

They'd use phrases like: 'you don't have a normal life expectancy'.

I had four doses of chemo during the course of the summer which I'm told is pretty much the standard treatment these days.

Then they prepped me for a stem cell transplant. In a nutshell, they extract your stem cells and then harvest them and keep them on ice. They then remove your cancerous bone marrow and replace it with these fresh cells. That was in September last year.

I had a few minor infections and need blood transfusions. I couldn't stay awake for more than 4-5 hours at a time. Again, this is all par for the course, I'm told.

I feel OK now. I'm even back at work two days a week. But I still get a deep tiredness at times. I have a full blood count every two months to check that my immune system is OK.

Now I'm in this sort of limboland. You're not cured and you know at the back of your mind that you can't have a normal life. Yet at the same time you need to behave like everything is normal. It's very strange. My friends and family have been very supportive but I know they've been shocked by the suddenness of it all.

You imagine that if you were told that you haven't much time to live that you'd just want to do everything you possibly could. But it isn't really like that. You don't have the energy but there's more than that. I know I don't have long to live but I still have the mortgage to pay.

You don't know how long remission will last. If you did, perhaps you'd do things differently.

If you knew exactly how long you had left, you could plan.

I was quite well-covered with mortgage insurance and life insurance and critical illness cover — I'd recommend that very strongly — but it's awful trying to access this money. You're filling in the insurance forms when you're at your very lowest ebb.

I'm trying to spend as much time as possible with the kids. I need to carry on doing that. Taking holidays and so on. But it's the time with them that counts not where we have it — I have no desire to go to India or China or whatever. You really see what's important when this happens to you.

I have just managed to pass my Royal Yachting Association levels 1 and 2 sailing courses on holiday and have just joined Oxford Sailing Club. I have also managed to pick up a tennis racket again and am playing an hour a week - testament to the surgeons good work I think!

We saw a local organisation called See Saw who are childhood bereavement counsellors. They helped us in discussing what we should or shouldn't tell the kids about what was going on. The hospital were very quick to shove leaflets under our noses about telling the kids you have cancer and 'daddy is going to die' type literature.

Thankfully we chose not to scare the kids and the See Saw guys gave us some really rational and balanced advice about how to deal with it. In the end we never mentioned cancer at all, gave the kids the info at their own pace and at their level and thankfully they got on with being kids while we did the worrying. See Saw suggested that they may find it hard to understand the idea of cancer so we talk about broken bone — that easier to get your head round.

The kids have kept Julie going. She and I are very pragmatic but still emotional and tearful at times. Every song I like I ask to be played at my funeral! You get by on that sort of gallows humour.

My specialist myeloma nurse at Oxford, Sue Moore was fantastic throughout. She was at the bedside within an hour of my diagnosis and has been there looking out for me ever since. The MacMillan nurses and their counselling service has also been important. These guys really fill an important role once you are away from hospital or between treatments. This 'downtime' is when you have to make sense of the experience and they help you understand that you aren't the only one and that the emotional process you go through is actually a normal one.

My ambition is to feel normal but I doubt I ever will. It's awkward how others react to you.

People find it very difficult to talk to someone who has an incurable disease. It's down to me to keep it upbeat.

Myeloma is something nobody knows anything about. It's tough for GPs to diagnose so it's especially important to publicise it. I'm pleased that it looks like the National Institute of Clinical Excellence will approve the drug Bortezomib (Velcade) for the treatment of multiple myeloma.

I've always been an atheist but I am reading more spiritual books now. A friend is a Buddhist and I'm attracted to that. I've picked up on relaxation and meditation. This is one the busiest periods of my life and I need to relax to do it properly.

I was angry at my lowest point during the chemo. Why me? I shouldn't have myeloma at my age. I'm more pragmatic now.

It's plain bad luck.

• Myeloma UK provides information and support to those affected by myeloma and aims to improve treatment and care.