Roller Coaster of Love

Hi everyone, well where to begin.

So that son-of-a-bitch shortness of breath came back again. Kind of makes me laugh, like Nige has ever really been able to take in and hold a decent breath during the last 2 years. But as I think I’ve explained before, cancer is just different levels of acceptance. When it’s a gradual progression each dip down is met with initial intense fear, but when nothing changes too much for a while, and life seems under control, you adjust and just get on with it. If Nige had been experiencing the symptoms he has now way back at the start I would have been a blubbering, hyperventilating nervous wreck. But time and knowledge gained means I can now mostly tell the difference between life-threatening and quality-of-life.

But hey there’s always room for more learning right?

So in the space of a week Nige went from comfortably moving around the house, and showering pretty well, to once again gasping and panting following small (for him) exertions. Really scary stuff.

What the hell huh? A week after the doc had told us the chemo was working and showed us how Nige’s tumours had shrunk and his left lung opened up. You probably have no idea how many times I’ve figuratively torn my hair out and thrown it on the ground shouting “what the hell?!!!!” But cancer doesn’t give a shit that it’s not logical or that you might be on the edge of the “spectrum” and can’t find any patterns in its behaviour. Cancer is like “whatever man, chill the fuck out, I’m just trying to live my life man, just like you”. Sometimes I liken cancer to mankind on earth. Slowly destroying everything even though we know in the end it’ll be the end of us too.

Anyway we did something we’d waited too long to do in the past, we called the nurse. And we put back up Nige’s steroids. Again. Those bloody steroids. We suspected that they once again had something to do with this latest debacle, as Nige had been trying to wean himself off again. But hang on, we have to be cautious with our thoughts here, don’t want to be attributing this to steroids when every other time it’s been, surprise, surprise, the cancer. “Surely it’s not the cancer fighting back already ” I thought. In one week? But the last 2 years have made me cynical and squashed my positivity somewhat. I always try to expect the worst so that the trip back down the depression pit is a little shorter, perhaps a little less painful. Perhaps.

My beady eyes stabbed into Nige for the next few hours, looking for signs of improvement or decline. A decline would mean a trip back to A&E. Not our favourite place to go for the school holidays. But he improved a little. And the next day we were at the hospital for chemo, so the docs could give him a good checking over. It’s funny we’ve gone from wanting to stay as far away from chemo as possible to being afraid of being turned away. It’s become a life-line instead of a poison, because it had to. There was nothing else left. Nothing fast enough and good enough. No time. No space. We know the odds we know the stats and can only hope to keep defying them. 2 years since Nige began to exhibit symptoms of lung cancer. Two long, too short, two years of a half-existence. Of living on the fringe. Watching the lives of others with a kind of wonder. That used to be us! Putting one foot in front of the other. One….granny….step…..at…..a……time.

So Nige had blood tests and an X-Ray. And guess what. His X-Ray looked great. When he was admitted to hospital a few weeks ago the whole left lung was white – filled with tumour, fluid, collapsed lung. This week the top third had opened right up. His bloods were good! a couple of weeks ago the liver bloods were a bit dodgy, this week they were better! So what was going on? First let me breath out a sigh of relief. Okay, the chemo is still working. On we go with the plan. Then questions for the doctor, why is this happening? Why is Nige still so short of breath? Well it turns out that because the tumour in his left lung is growing around the bronchial tubes that are the only source of air for that lung, any inflammation can partially block this precious source off. Cancer causes inflammation, so can chemo, and steroids reduce it. It’s as simple as that. If Nige drops his steroids down too low, the cancer inflammation starts to block the tubes. So until the chemo reduces the cancer enough to keep it away from those tubes, Nige will have to watch his steroid dosage closely. Because if the inflammation gets too bad, all his bronchial tubes to that lung could be blocked off. And that is not good. Did you think, like me, that the other lung would compensate? Apparently not so simple. Bugger.

So good news in that the chemo still looks to be working, but bad in that Nige is still in a very precarious position.

Such is the roller coaster ride at the worlds shittiest theme park. And no I don’t mean Rainbow’s End. But hey, at least we’re still riding the fucker.

 

 

 

 

 

 

 

 

2 Funerals and a Wedding

The trouble with making friends in cancer world is that you lose them. The friendships are fast and intense, the way good friendships should be, as we all should live since time for everyone is finite. But it’s a fact that those with terminal diseases are often gone from this world earlier than others. Too, too early. And they are always “good guys”.

Nige and I lost 2 good guys in 2 weeks. And I want to say their names out loud because they were and are gems in the rough.

Daniel Stamper and Ian Charman.

I didn’t know either of these men well, but Nige and I were touched by both of their stories, and through attending their funerals got to know more about why they were so loved and will be so, so missed.

I’ve been to too many funerals for someone my age, so I know the drill.  It’s always the grief of others that gets me, I can empathise. That gut-wrenching pit of loss that threatens to consume. Surviving at the edge of a black hole, until over time the immense hollow sadness loses some of its pull, and we slowly live again, altered forever and carrying tiny pieces of remembrance in our hearts.

Nige attended both of these funerals, on legs that bend sideways as he stands. With breath that falters with too much activity. With energy that isn’t ever really there. I was proud of him. They were tough, I won’t lie, being so close to the bone. But it was the least we could do to honour the magnificent battle that both men had fought. They did everything within their power to stay with loved ones as long as they could.

As Nige still does.

And I can’t help thinking, will that be us soon? The funeral and the coffin and the brave kids and the devastated friends and family. The disbelief that this has happened, even though we know it must for all. We are never prepared.

But we must focus on the now, on the what is, on the what could be. With, I believe, those who have fallen alongside us. Because I know they will be gunning for Nige.

Most of you have likely now heard the news, that Nige’s latest scan results show a reduction in the cancer again. Against the odds of an only 8% likelihood that the treatment would work. And so we gather up our hopes and press on. Pushing relentlessly against the tide. Believing what we want, not what we are told. Believing in the extraordinary.

Nike’s dad came over from the UK again a few weeks ago. He and Nige spent quite some time setting up Nige’s new computer and organising our wedding photos. It’s been a while since Nige has had a project other than cancer, and it was heart-warming to see him and his dad side by side, performing this simple but important task. Sifting through the happy memories of an event that traditionally takes place when all of the hopes and dreams of the future are laid out glittering in a seemingly endless path.

But I’m not going to dwell on that. For as long as you only focus on each glittering paving stone and its beauty and purpose, the path is always endless, right up until the day that it’s not. But that is just one paving stone. And if you imagine that each moment is a stone, you can make that path as long as you like. The beauty and purpose of each stone is up to you.

In the attached picture you’ll see Nige and I posing for a photo way back in 2001 I think. Was this a prediction of our future? The path seemed longer then, but I have no doubt it is more beautiful now. And the purpose is clear and strong. For there are 2 more faces that belong in the photo now, and for them, we will fly far higher and farther then we ever thought possible. Where I’m sure, if Eva had her way, unicorns would roam. And Liam would be a famous You-Tuber.