Jude Coy
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Living with Myelo

Jude Coy
Posted by
04 Dec 2015

Creating our support blog and website livingwithmyelo.com has helped us to feel like we are not alone and given us much hope.

Sometimes life catches you out. You might be ticking along nicely, minding your own business, enjoying the day to day, even planning ahead to the future. Then in a moment, just one nanosecond, the hand of God reaches out of the sky with his oversized sponge finger and he chooses you.

For some people it’s a good thing. A lottery win, a new baby or a fabulous promotion.

For others it’s a sudden redundancy, an eviction notice or discovering your partner has a clandestine life.

Whatever the situation, life has a horrible way of catching up with you, poking its nose in where it’s not really wanted. Shoving its way into your business, leaving your otherwise harmonious sense of being in ruins.  

Our horrible moment came in 2009. Recently married we had started an exciting business venture and were busy planning a new life in Australia. I even got as far as filling out the immigration forms and gathering my evidence for extra points. We didn’t have it all by any means, but we did have a future. We were motivated by life and what it had to offer. The opportunities, the possibility, the carefree fun.

Then my husband started feeling a bit rough. He couldn’t put his finger on it. He just didn’t feel right.

So he went to the doctors. Had a few tests. This went on for a while.

You know what’s coming.

It was the week before Christmas. Whilst everyone else was getting ready for the festive season, scoffing mince pies and adorning themselves in Christmas jumpers and cheap sparkly tinsel, we were sitting in an NHS consulting room watching and feeling the bottom fall out of our world. Our picture perfect future crumbling into dust.

My husband has since lived with this debilitating health condition every second, every minute, every hour for six whole years. One day for some unknown reason it just switched itself on. An unpredictable condition, one in one hundred thousand people are unlucky enough to be stung by it but when it stings you know you have been bitten hard. Its name is Myelofibrosis; a lesser known rare type of chronic blood cancer.

Sometimes he manages to coast along. Apart from the tiredness, the bone ache and the general feeling of malaise, he can almost pretend it’s not there.

But sadly he can never forget. Because like every good bully this disease enjoys the power and command it has over his body. It likes to strike him down, remind him he will never be free. Large doses of pain in his legs and shoulders, the awkward discomfort of an enlarged spleen pressing on his other organs, the dizziness, the shortness of breath, the night sweats.

What is now certain about our future is that this disease could and even though it absolutely breaks my heart to write this, probably will beat him. I use a euphemism as the blunt monotone sound of the actual word is too much for me to bear right now. I comfort myself sometimes and remind myself that this is a fate we must all meet. But I also know this is ever so slightly self-delusional. Because with every blood test, every set back, with every day we are one step closer to the explosion of this ever present ticking time bomb.

They told us he had eight years to live. I know they had to be honest. That sugar coating the truth helps no one. But sometimes we both wish we hadn’t heard that number. It hangs between us. A reminder of the time we have left. With every crossed word or frustrated sigh we both feel it. The guilt of time. Of a life fading.

Despite wading through the darkness and at times feeling like a pair of lost souls, we do have hope. The hope of finding a bone marrow donor at the right moment and when it is needed. The hope we place in the wonderful doctors and nurses who care so diligently for him. The hope of medical research and finding a simple cure.

My biggest hope is of course that he will survive. He will fight this and beat it as others have managed to. That he will always be a father to our amazing son who came along in the midst of all this chaos three years ago and has given us that extra incentive to work together to boot this thing into oblivion.

When I look back at our past, a young married couple naïve to the pain of the world, I smile fondly. Ironically what this has done for us is show us how to really live, perhaps more than we could have ever known. We aren’t bungee jumping or jetting off on our travels or partying like there’s no tomorrow. Instead we have learnt that life is now. That it’s what you make it. That life is short. That all of these clichés were spoken for a reason. You do only live once. So make it worthy and make it wonderful.

This situation has made us very sad. It’s made us cry by the bucket load. It’s made us angry with the world at times. But if you are to get through this kind of horror as a family, if you are to survive it, you have to believe life will turn around and that oversized sponge finger will one day turn into a mouth-wateringly good trifle.

Our website and personal blog livingwithmyelo.com gives a voice to Myelofibrosis and offers (non-medical) emotional support to sufferers and their families. But it isn’t just about this one condition, many people with other forms of cancer are taking some comfort from our site. Using my love of writing to raise awareness and help others is really helping us as a family to feel like we are not alone and to have hope.

Please do visit or follow our site and leave us a message. We would love to hear from you. #hope. 





Thank you so much for taking the time to write this blog although I hold you responsible for making me cry! Your attitude as a family to all this is a real inspiration and has certainly given me the strength going forwards as I battle my degenerative lung condition which they believe is a legacy of my leukaemia.

Wishing you and your husband all the best going forwards and want you to know that we are always there for you to help in any way that we possibly can. Stay in touch and have a fantastic Christmas.



Thank you Andy! We have a long battle ahead of us but we are trying to remain as positive as we can. I'm so sorry to hear about your lung condition. Life is so unfair sometimes. Sending you lots of good wishes. I hope you have a great Christmas. Jude 

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