When my husband was diagnosed with Myelofibrosis six years ago I remember having this awful feeling in the pit of my stomach. I was devastated. For him. For his family. For us. But secretly I was also a bit upset for me too. As a young ambitious woman I was full of hopes, dreams and aspirations yet in one horrible moment that vision of a perfect future came crashing down around my feet.
All I could focus on for a while was the rubble.
When cancer in its many forms strikes your family (as it does to so many now) it changes everything. The way you look at life, how you see your future, what you eat, the places you can go on holiday, whether you can have kids. I was only thirty and suddenly I was imagining myself as a widow - hopeless and lonely in a yellowed wedding dress, crying into my unwashed pillow.
An extreme reaction I know but everywhere we turned we faced hurdles. Holiday insurance was the cost of the holiday itself. He ran his own driving school business so suddenly the pressure was on me to earn more money. We needed extra time off work to attend what felt like hundreds of hospital appointments.
It was exhausting and terrifying.
The worst thing was the way people started to look at us. They pitied us, thanked god that it wasn't them and whispered when they thought we weren't listening. They were just being nice and trying to find a way to make us feel better but I'll never forget my husband turning to me six months into the whole ordeal and saying, 'Nobody sees me any more.' And it was true. With every well wish came a look of sympathy. Even I looked at him differently. He would never just be him again. Cancer had started to define him and us.
At first we didn't know what to do with the information so we threw ourselves into fundraising. I am a hopeless runner but powered myself around a 10k race for Bloodwise; we both did a sponsored walk for MPD Voice. And it worked for a while. We became masters at ignoring the elephant in the room. He learnt to manage his symptoms and I threw myself into my new role as 'the strong one.' Working full time, later continuing to do this and look after our young son, keeping the house looking clean and tidy. Our routine was a well-oiled clockwork machine. Friends would (and still do) throw around adjectives like 'amazing' or 'unbelievable.' And I have to admit I was doing well there for a while. We both were. Really well. In fact nobody would have known. Lots of people didn't. We were brilliant at hiding the truth.
Recently my 'strong' façade came crashing down around me and I was left looking at the rubble again. I hadn't been coping. I'd managed to control it for so many years but suddenly the past caught up with me and I realised something. I'd been hiding in the shadows, desperately trying to push us along without stopping to consider how it might be affecting me.
I turned on the tap and couldn't stop.
Now I've stepped out of my well-orchestrated life for a moment I can see how being a carer has changed my life. I never thought I'd say this but I actually think it has changed me for the better. Suddenly I am stronger, less selfish, more empathetic. I have an inner strength that I never knew existed and a confidence that can never be beaten down. Most importantly I have realised that it is okay to be upset, to be vulnerable and to cry for what I might lose.
After all, he's pretty amazing.
Cancer, illness, disease. It does change everything but when you finally stop and accept what is happening to your family, you can't help but reassess your priorities. Nothing else in life really matters in the face of something so huge. It's the patient who matters. It's the patient's family who matter. It's you who is important.
The rest of it can remain in your shadow.
Follow Jude's blogs about her family and their battle with blood cancer (myelofibrosis) at http://livingwithmyelo.com