Posted on January 14, 2016
The return to the chemo chair on Tuesday started out well enough. I paid a visit to radiology first, where they accessed my port, ran some dye through it, blood clot gone, everything running nicely. I had a coffee with my friend Bekkii and then we headed to the chemo ward for my infusion. Scored my favourite chemo nurse, barrel of laughs from start to finish, he is, and we were almost festive. I looked at my liver function tests and they are travelling nicely downwards, and I have a good feeling that the SIRT is doing it’s job. All we need is for chemo to hold my lung tumours under a centimetre until my scan in early February, and then if the results are good, we can start working on them. My oncologist says if they go over a cm, the radiation doctors won’t touch them, making the SIRT effectively useless as the lungs will get me. But, chemo is going in, all good.
Until about 3/4 of the way through, when I felt a lump and pain around my collarbone. Called the nurses…the chemo is pooled up in the vein – it’s blocked. They disconnect and give me the rest of the infusion through my arm, straight into a vein. Missed half my chemo dose, because they couldn’t connect the cock bottle, and of course, that worried me, but I was still hanging in there, I was ok, it’s only one dose, people miss a dose all the time due to various things. Still on track, sort of. There is talk about trying to move the port again to see if we can get it into a more optimal position, and they talk about doing that before my next cycle. I am worried….very worried, as I face having a picc line in my arm for the rest of my life if this doesn’t work.
No swimming with my children for the rest of my life.
No showering without wrapping up my arm within an inch of it’s life JUST TO HAVE A FUCKING SHOWER.
I’ll never have another bath.
Never walk into the ocean and get soaked.
NEVER AGAIN. EVER.
But still, I rally. It’s ok, it will work out.
Today started out well. I fell asleep very early last night, exhausted from chemo and the worry, worry, worry that I wasn’t letting in. Best just sleep through that. I woke up when Gaz went to work at 5, but I went back to sleep and my beautiful babies didn’t wake me until after 11, they just got up and watched the telly and fed themselves.
I’ve been enjoying this beautiful home since we got back from Mitta. I have been motivated, very motivated to finish it. I have other rooms i want to change around, things I want to organise, so I got into that yesterday. So much house proudness coming back, so much I haven’t felt for two years.
I was feeling so good.
So, two days after chemo (the bit of chemo I did get was the one with the most side effects, so I have still been getting them).I tell the delighted kids it’s baking day. They have been dying to get into that new kitchen, and so have I. So, I pile four kids, including a 7 year old that can’t walk into the car, and we all head to the local shopping centre. We have a lovely lunch together at the food court and then load up $120 worth of baking needs (really it would be cheaper to buy the biscuits and the rocky road, but that wouldn’t be as fun). We head to the fruit shop, and then comes the call.
“Hi, it’s such and such from radiology. We’ve got a request for you to come in tomorrow at 1.30 to have that port looked at. Is that ok”.
On the outside I would have looked and sounded normal, but nup, I’d lost it. I wanted to say..
NO! I HAD PLANS WITH MY CHILDREN TOMORROW.
NO! MY HUSBAND JUST WENT BACK TO WORK, I CAN’T ASK HIM TO STAY HOME AGAIN.
NO! DON’T YOU GET I HAVE FOUR FUCKING CHILDREN AT HOME, I CAN’T JUST GET SOMEONE TO LOOK AFTER THEM AT THE DROP OF A HAT.
NO! I WAS JUST THERE TUESDAY. I’M NOT READY FOR THE NEEDLE IN THE CHEST AGAIN. I’M NOT READY FOR THE PUNCTURE HOLE IN THE GROIN SO YOU CAN STICK YOUR FUCKING WIRE UP INTO MY CHEST. I DON’T WANT DAYS OF LIVER PAIN LIKE LAST TIME BECAUSE YOU PUSHED THE WIRE PAST A LIVER TUMOUR. LOOK YOU ARE A REALLY NICE PERSON, BUT I JUST WANT YOU TO FUCK OFF!
I didn’t say any of that of course. I said yes, I will work something out, I will see you tomorrow. And I went home and baked with my children.
I’m hanging on by an absolute thread.
Gazbo came home and we went to meet our friends at our usual Thursday night pub dinner date. I couldn’t pull myself together, not at all, so by the time we got there, I had abused Gaz for no reason, several times, then when our friends asked how I was I told them I wanted to be dead. The sooner I was dead the better. I made quite a scene for the rest of the pub guests, and some of the staff too, who must have been wondering what was wrong with this nut. Needless to say, we ate and ran.
I’ve snapped back into that dissassociative state that felled me a couple of months ago. I don’t know what to do with my mind any more, I have no power over it. I am so tired, I can’t roll with any punches, give me the knock out blow. What do you do when the black looks so attractive. It never has before. Don’t get me wrong, I am not going to do away with myself, I could never do that to those who love me. For so many reasons, I want to live.
But I don’t know how long I can live like this.