Living with the Big 'C' & Coping with Deaths

You mourn those friends who die during the course of your life and your cancer journey, but there is that small part of your brain that questions, "Am I next?" One thing that strikes me is how quick it can be. With cancer, you can one week be okay-ish, the next week - dead! Sh*t! That's how precious life is. That's how quickly you can be gone from this world.

The friendships you make in the cancer community

The friendships made on this rubbish rollercoaster are just as important as your real-life friends. In fact, they're maybe a tad more important because you don't have to explain anything to them. They just "get it."

Friends who have been through the highs and lows

You don't have to have the same type of cancer; cancer is cancer wherever it is in your body. Those online friends are fabulous - you don't have to talk every day, but you know that when the poop hits the fan or it just all becomes too much for you that there is someone who has been there, maybe once or twice, and will have the right words to help you process this cr@p.

No one knows how to cope when living with advanced cancer

We are all living longer with cancers, and we don't always know how to cope or how to fashion a life for ourselves. We just know that that clock is ticking away. BUT neither do the health professionals, it is all new to them, too, although they are now beginning to research the psychology of living with advanced cancer.

The fear of recurrence

We can't just let it go from our minds. We can forget for a while, maybe a few hours, but the threat of a recurrence or a return of the cancer is always there. Always.

We need to acknowledge these experiences

So, what are we meant to do? We can't carry on as normal or as we were before cancer. We have been through too much. And as much as we are living longer, we are living longer with life-changing experiences, maybe extra illnesses that we didn't have before cancer. We need to acknowledge what we have been through, and we need to keep speaking about our experiences, the good and not so good days. We need to share our experiences, we need to share how we feel, without the fear of being judged by others.

Being NED comes with problems of its own

I was once Twitter-shamed by tweeting, "[No evidence of disease] once again, so why don't I feel happy?" Someone responded that "they would give their right arm to be NED." Does that mean I am more fortunate than this other person? No! It means I am in a different place than them. I know that NED is a wonderful place to be, but it isn't without problems of its own. Every pain I feel, I try to stop my mind overthinking it...every cough, twinge, ache, and every different smell (of my pee) sends me bonkers. You end up telling yourself to stop being "stupid," but is it really being stupid?

The mental and emotional impact of terminal cancer

We know that the small cell bladder cancer will eventually kill me; that's if heart failure doesn't get me first. I am right to worry, but maybe sometimes I overdo it. There has to be a balance. We have to find a balance.

I'm nearly 4 years on this rollercoaster of hell. You would think that it gets easier? I think medically it has; I'm not being prodded and poked so much. Mentally and emotionally? If I can get through the day and have a laugh, then that's a day not wasted.