Just over two years ago, I was diagnosed with an aggressive form of terminal cancer. There would be no surgery. No cure. I was told I might only have as little as two months to live.

People are unpredictable though, and no-one can tell you how long you’ve got. Still, I wasn’t meant to be here. You might say that I defied the odds, because that’s what you’re up against. A set of the outdated stats used to predict life expectancy. I am not a number though.

What it takes

So much has changed in that time, and so much has stayed the same. More than anything, I’m grateful for every second of extra time I’ve had with my family and loved ones. Time I wasn’t meant to have.

I still live with the thought that things can change in a heartbeat. Indeed, it’s something I’ve never been able to fully wrap my head around. Cancer is unpredictable too. It might decide to stop behaving. I could be dead in a matter of weeks. I’ve lived with that hanging over me for two years now. If I was to die now though, I wouldn’t regret the decisions I’ve made. The things I’ve done. I’ve always tried to make the right decisions for me. It’s worked out well so far.

Did I get every decision right. At the time, yes. All you can do is make the best decision you can. If it’s for the right reasons, and only you know if you’re fooling yourself or not, then it was the right decision. Just because something doesn’t work out how you hoped, doesn’t make it wrong.

I’ve had to learn to be kind to myself; to treat myself with respect. I might acknowledge when things haven’t gone my way, but I don’t beat myself up because of it. We’re all only human, after all, and being human requires a lot of patience. I deal with a constant stream of emotions. It never stops, and some days, it’s hard to keep up. Joy turns into sadness. Sadness into joy. Sometimes both at the same time. Happy sad.

Sometimes, I catch myself looking past the present, and into the future. It’s beautiful and vulnerable – until the vision crumbles away around my feet. The present is the only safe place for me now. Every time I book something new, it’s exciting. I allow myself a moment to dare to look forward, hands covering my eyes, cancellation cover in place. I’m that person now.

Give it everything you can

I’m not the same person I was though, how could I be. I think I’m a better person. I’ve used my cancer diagnosis as an opportunity to grow as a person. I have more to say these days, even if, sometimes, I should try and hold some thoughts back for a rainy day. But then, why put something off for another day. Especially when today is here right now. No more waiting for tomorrow.

I’m just coming out of a period where a little bit of complacency had set in. You wouldn’t think it would happen. Maybe I started to believe my own hype. So, have I been lucky. Or is it more than that. The reality is I can never know. All the things I do to look after myself physically and mentally might not do anything. Except, they’ve given me a sense of control over my own life and health. It’s been valuable.

Knowledge, too. I’ve made a point to learn everything I can about cancer and its treatment – and I’m learning new things all the time. I keep up to date with the latest studies. It’s an exciting time. New things are coming along all the time. It gives me hope. Hope. I’ve never lost hope. I’ve always believed that I was going to make it. Even when the cancer spread again.

I’ve suffered. There has been a lot of suffering. Physically and mentally. Times when I needed a walking stick. A wheelchair. When I was in the worst pain I could imagine. Saying I can’t go on. Knowing I can. Not afraid to cry. To get angry. To feel beaten down by this shitty disease. I’m still standing tall though. Cancer hasn’t beaten me. My spirit is strong. My will to live intact.

Legoland. Disneyand. Lapland. The Highlands of Scotland. The Lowlands of Wales. All over England. So many adventures. So many wonderful family memories. And I love my family. That’s the biggest adventure for me. I still can’t face the idea of leaving my daughter. I’ll never be okay with that. As a parent, I find it so utterly over-whelming to even contemplate what has to happen. Nature is cruel.

The doctors keep talking about my disease as being ‘stable’. It’s been that way for over a year now. That doesn’t mean my life has been stable. Far from it. There’s been ups and down. Twists and turns. And, everything in between. I’m really proud of myself for coping with it all, even if sometimes I feel like I’m not. Coping that is.

This blog has helped. My Facebook page. Interacting with all if you. And I hope I’ve helped in some way. You’ve helped me. I’m currently writing a book. I hope people want to read it. I want to let people know what living with cancer is really like. I want to inspire people to live their best lives. Not because I’m remarkable. I would never think in those terms, but it is a remarkable thing to live well with terminal cancer. If I can do it though, then so can you.

I’m proud of the poetry book I finally produced for charity. I really should do another run because enough people keep asking me for it. I’m also working on a children’s book with an old school friend. It’s something I’ve wanted to do for a long time, and well, It’s never too late.

Hangin’ on

I’ve known far too much death. Been to far too many funerals. Each one seems to hit me harder than the last. And, I feel guilty. Guilty that I’m still alive. I know I shouldn’t. It’s just a natural human response. Some of these people were meant to live. That’s hard to process. I wish I knew what I know now about treatment options in other countries. I might have been able to help.

Instead, I’ve benefited from their incredible generosity. Life keeps moving forward, and so should we. That’s the key really. You have to keep moving. Cancer cells learn to adapt. I’ve learned to do the same. It’s no good wishing for my old life. I have to love the life I’ve got. I’ve let go of the things I don’t have. Can’t have. And, I’ve set new goals for myself. Realistic. Practical. Achievable. I count every single win. No matter how small, and I decide what’s important. I push myself to do more, but there are times I need to do less. It’s a balance. Everything is a balance. Staying alive versus quality of life.

I have other plans for the future. A trip to Northumberland next week. Paris at the end of the month to visit Monet’s Garden – I never used to be interested in art. Still not really. But, I fell in love with Monet’s paintings of his ever changing garden. It’s been inspiring. Then we’re taking a train ride through Switzerland and up the Eiger Moungain, the highest station in Europe. I’ve booked seats on the Flying Scotsman for our wedding anniversary in November. And Ida’s first gig. Another first. Never the last. Always something to look forward to.

Still, money will run out, Hopefully not before I do. Then what. A sense of counting down the minutes until my time runs out. What is living with a terminal illness anyway. It isn’t that everything has to be exotic. Eiger Mountain might be high on my bucket list, but today I’m going to climb Roseberry Topping. It’s big (once thought the biggest hill on the North Yorkshire Moors), but it isnt Eiger big. Still, it’s too big for me to climb. I’ll do it anyway. Not because I’m fit and strong, but because I dont know when to quit. Slow and steady. On another day, I might not even try. Seize the day.

For the past three weeks I’ve been on Steroids to deal with side-effects from my immunotherapy. For months I put up with debilitating pain and fatigue. Nausea and sickness. Skin changes. Hair changes. Changes in my mood. Chills and night sweats. It isn’t any fun. Everything crossed it can be managed. I’ll be devestated if I soon end up in the same place. Not that I complained. There isnt an arguement thaycant be won by saying:

at least I’m still alive

For now. What happens next though. My oncologist let slip last time out that funding only covers me for two years of treatment. So, then what? Flying solo. There’s chemo. Not that I would want it. But I’d take it. I’d never turn down treatment. The prognosis for people like coming off immuno-therapy isn’t great. The cancer isn’t gone. How long would I have.

Something will come along though. Just don’t ever lose hope. No point worrying about something that hasnt happened. Worry about it when it does. Not before. Besides, I’ve got a big hill to climb. But then, what else is new.