S.O.B

Hi everyone….

I wish updating you again so soon meant I had good news. I’m sick of being so darn depressing. But I’m committed to seeing this blog through so if you’re on board keep reading – it’s not all doom and gloom (?)

So now we have an oxygen machine and a shower stool at home. Two innocent contraptions I’m sure but their presence speaks volumes. They make me think of old sick people and tragic times. But they are also our shoulders to lean on at present – in the case of the stool literally!

Last Thursday the cancer nurse happened to ring. She’s got a knack with timing, previously she rang on a day when Nige couldn’t stop vomiting and we were dreading another trip to A&E. This time his shortness of breath – or SOB if you’re up with the cancer lingo – was getting ridiculous. Yes, the phrase “son-of-a-bitch” comes to my mind too when I see “SOB” so don’t feel bad. To put it in perspective, going to the toilet leaves Nige short of breath and panting, but having a shower almost makes him pass out from the exertion as he’s so oxygen starved.

This time she did suggest we go to A&E. Sadly nothing in the pocket of her nurses’ uniform was going to get us out of this one. Nige was due to start chemo the next day (which we had already brought forward a week due to how bad Nige was feeling), and she was worried if he rocked up all grey and heaving for breath and stuff that they might delay it and he’d end up in A&E anyway, except it would be on a Friday afternoon. (Cue drugged up and drunk people in soiled clothes shouting and vomiting all over the place).

The guts is that his left lung is still pretty much a useless deflated hunk of flesh. His right lung isn’t compensating enough and so any small exertion leaves him gasping for breath. To add to this he may have had a slight infection, plus a new surprise last minute entry – he has blood clots!

As you probably know blood clots aren’t to be messed with so they gave Nige a blood thinner, an eye popping dose of steroids to decrease all the inflammation in his chest, and some antibiotics for good measure. All of this did help, and he was cleared for chemo on Saturday, and then sent home this Tuesday just gone.

The machines were there to greet him – “hi there buddy, we are here to help you, but at the same time confront you and your family with the news that you’re really sick”. Ugh. TBH I’m really glad stool and O2 are here. Anything that helps Nige retain some sense of independence and dignity as he fights through this latest battle is cool with me.

And he hasn’t got any worse physically apart from being bloody tired. So I’m clinging to that. Mentally it’s a different story, of course. How does one pick themselves up time and time again with no promise of a happy ending? Through love, hope and sheer determination. Through the support and energy of those close by. By some miracle. It’s probably a silly thing to say, because you could say what choice does Nige really have, but I’m so bloody impressed with this man. To grow into an even more incredible person amongst this cancerous turmoil. To make me love him even more for his love for me and his family, his guts, his awareness, his unwavering fight. He does have a choice, he could just give up, but he simply doesn’t.

Tomorrow is chemo No. 2 and you guessed it, I’ll be making another huge birthday wish. I can’t tell you what it will be but you might be able to guess.

Xx

Just the Facts

Hi everyone, no bells and whistles today, just a courtesy update for those interested. Squeamish/Sadness alert!

Nige is no longer in remission. The cancer has come back with a vengeance. There is some good news, which is nice, but the overall picture is a little scary to say the least.

You may remember that after Nige had the great scan result in January, he began attempting to get off steroids. This was rough, and at the time we were trying not to think that it was because the cancer was still growing. Turns out, it was.

The last few weeks have been the worst, Nige’s breathing and energy declined steadily, starting with difficulty walking up hills, to walking up slight slopes, to walking on a flat surface for more than a few meters. Shit we were worried.

So roll on the scan, and while we tried to hope for a miracle, it was evident the news wasn’t going to be cheerful.

The good news is, Nige’s bones still appear to be healing, his brain is clear (thank god!) and the fluid around his heart is not doing anything alarming. The shitty part is that his entire left lung is now pretty much useless. The bottom has been down for some time, stuck together almost. The top is full of tumour, which is now encroaching on his bronchial tubes which of course lead to his windpipe. The rest is squished by what is called a pleural effusion – fluid that has collected in a cavity between the outside of lung and the inside of the chest wall. This leaves his right lung, which would be fine, however this is starting to look a tad crappy too. To top it all off, he has new pesky lesions in his liver. No wonder he’d been feeling like arse.

Nige went into hospital on Friday so that they could drain some fluid from his lung. They basically slice you between the back ribs and stick a tube into the pleural cavity, and then drain the pus-like liquid out. Nige said it felt pretty nasty – no pain but very strange. As you’d imagine, having someone fossick about in your chest like that. The guy thought he might be able to get close to 2L out, but finished up with 800mls. Still a decent amount! Sadly, Nige’s lung decided is wasn’t going to re-inflate despite having more room, and so this procedure made no difference to Nige’s breathing and energy. So home we went.

What’s the plan? Well who really knows, Nige can try more chemo and hope for the best, again. He can try alternative therapies and hope for the best, again. He can try radiation, which sounds pretty risky and horrendous in itself. He can try all three and really go to town. Or he can do nothing, and maybe pray for a miracle. All in all, not a very appetising selection. Most of us at least have the weekend to look forward to after work.

So here we are, further back then where we started. Further back than ever before. Not sad to have experienced the good parts of this journey, but just so darn frustrated that we couldn’t fly far away from those nasty statistics. Hell Nige has done incredibly well so far, and defied the odds at every step. But how much longer can he be expected to go on like this? It’s really not a life. There are good bits dotted in-between the sickness, pain, anxiety, grief and treatments, but not bloody enough. I am desperate for a few more beautiful months with Nige and the kids, making more wonderful memories. But what I really want is a lifetime.