All Patient Stories

Myeloma meant absolutely nothing to me when I was first told I had it 8 years ago. I had never even heard of it. That all changed when I was given a prognosis of 7 years to live which then changed everything.

I no longer took for granted that I would see retirement age, see my kids leave home or even be able to live the active and largely enjoyable life I had forged in the 37 years prior to this life changing diagnosis.

"I went from being a husband, dad and professional to now also being a cancer patient which to this day I do not accept as my identity."

I fought acceptance until I had no more energy to take to a fight I could not win. Weeks of sleepless nights, anger, frustration, fear.

“Why me? Well, it took a moment of introspection where I turned that question on its head and asked myself why not me? If 1 in 2 people get cancer why not me? I am not special or unique. It was this that allowed me to let go of the injustice and to find, if not an acceptance, a pragmatism that has held firm to this day and helped me to move forwards into a new life."

Where the diagnosis ripped away my sense of identity, it more pointedly stripped away my sense of agency and control.

What helped me to move on into a new future was finding something I had agency over and that was finding the one thing that might help me; a stem cell match.

I started a campaign called to raise awareness of this treatment for all blood cancer patients and it helped me to feel in control and able to influence the world I now found myself inhabiting.

Like so many blood cancer patients, I am yet to find my match but such was the success of the campaign, I know of 26 people who have as a result of what we achieved.

I am more proud of this than anything I achieved in my previous career.

Myeloma may be incurable (today) but such are the treatments that are now available that were not 8 years ago, I am optimistic that we can all look forward to fruitful and productive lives regardless of what the illness imposes upon us today.

"I was told I had 7 years to live and that was 8 years ago. Medicine and science give me hope."

We as patients must in my opinion, play our part and keep buying ourselves time by staying active and engaged with our lives as well as the illness itself. Have people in your life you can turn to when times are tough but relish in the good days, of which there are more than not and remember why you take the chemo. The alternative path is not worth contemplating, at least not for me.

Yes, it is hard to stay positive when you take a cocktail of drugs 3 weeks out of every 4 and live with the side effects. Often externally, people will not notice your struggles because externally, we often look absolutely fine. No obvious lumps or signs of cancer that people can recognise. But for me, I have 2 reasons to never give up in my sons Max and Seb.

I will always be their dad and if my time with them is to be limited, I want them to remember me positively. Know that I never gave up and tried to be a role model for as long as I could.

For anyone with this illness, find your anchor and keep it secure in your mind when the dark days come, which they will.

And my closing message to anyone diagnosed with or close to someone with myeloma?

You are not on your own. You do have control. And together, we support each other.