Saturday, January 26, 2019

Not what I once was

So I've been a bit upset for the last week or so. A person very close to me apparently knows less about me than rando's who read my facebook drivel on the regular. I don't want this to turn into a whinge, it isn't that kind of... I don't know, disappointment? PLEASE FEEL FREE NOT TO READ THIS, not everything I write has to be your cup of tea!!

So there's a whole lot of things that I want to say just as disjointed bits of things that seem to have been *lost in translation*. Mostly from the time I was especially ill. Not just regular ill.

Regular ill for me is Fibromyalgia, mostly causing pain in the lower back (and to a lesser degree other places) and fatigue (a combination of lack of sleep and my brain not doing sleep right). A couple of Migraine complexes, fortunately, neither happens overly often. One is a bit all over the place, it probably averages once a month over time but really it's usually several months of nothing then a week or two of every other day. The other happens roughly every 18 months. Nerve pain, which may or may not have been caused by duff discs in my spine. The discs have been replaced but only a very little of the nerve pain and numbness have abated. I used to have Polycystic Ovaries but they took my ovaries out a couple of years back so I technically don't have that any more. Because I had cancer...

Breast cancer. Ductal carcinoma. A big-ass tumour. And here's where things get a bit weird. I wasn't at all closed-mouthed about talking about my illness. I felt like it was important for me to talk openly about my experience because I can and anything I can do to make the situation less awkward for the next person is something I should do. So how then does someone I consider very close to me, and most definitely connected to my facebook - which was my primary platform for talking about all the shit that was going on - manage to have spectacularly the wrong idea about... most of my illness experience.

I was VERY ill. As much as I didn't make a huge deal about it, my life was quite definitely on the line. When the early tests came back showing no signs of spreading the team (when you have a big ol' cancer you get a whole team) decided that we should treat it as if there had been spreading because it was so hard to believe that there wasn't any. My second round of chemo went so badly that we had to pull me off it even though it was a big risk to do so. Because chemo is poison. The idea is to poison the cancer faster than you poison yourself. The second round of chemicals was killing me too fast. So we pulled me the hell off that. But many of the problems associated with that round of chemo (and some that were related to the first round as well) like nausea hung around giving me grief for long months. I could barely eat. The only thing I could hold down regularly was Bundaberg Ginger Beer. Yes, it had to be Bundaberg. Every other brand I tried, NOPE. Lemonade? NOPE. Water? Oh hell no. I tried things I had previously found to be good with nausea, nothing else worked. So I was stuck with ginger beer whenever I couldn't eat. Which I guess probably worked out as about 5 days out of every seven. I'm pretty sure Bundaberg can thank me for a spike in their sales. That was a joke, no one can drink that much ginger beer. I was moved from taking codeine for pain up to morphine, because having cancer wound my stress up a lot. I still don't really have it back under control. Fibromyalgia is stress driven, so that's a thing.

Between treatments, very carefully worked out with my team, I took a holiday. I used a lump of my crisis cover insurance to take my daughter on a decent holiday, to Canada and the United States. Vancouver, Seattle & Los Angeles. I had a lot of reasons for taking that trip. The big one was DEATH WAS STILL ON THE TABLE. I wanted to take my daughter on a trip worth remembering in case we never got another chance. I lost my mother young. I know how awful it is. I wanted to make sure that her experience was the least terrible it could be. The other biggish one was, I really really needed some time and space to absorb everything that had happened to me. Being chronically ill, suddenly having a shitty extra bonus illness making me feel like spectacular garbage was physically, mentally and emotionally unbelievable. Crippling. Being able to pretend I was normalish for a couple of weeks was amazing, I wasn't normal at all. I was exhausted every day. The trip might have been nicer for me if I'd been able to leave it until later, until after I'd recovered to my normal (which is not at all normal) but you see the thing is if I waited for that I might have been trying to take a holiday in a funerary urn. Which doesn't sound like a great trip for my daughter.

During my chemo, surgery & radiation Triple Dip I was admitted to hospital several times. Each time it was because my immune system had collapsed. Each time I was put in an isolation suite because being around people who hadn't been vetted or forced to wear silly outfits (surgical mask and disposable scrubs) was dangerous for me. If it isn't clear yet I WAS REALLY SICK. I hated going to hospital, I hated staying in, I tried to be sensible about it though because I knew that taking risks with my immune system would be a really stupid thing to do. I had a special card for the hospital (It's stuck on my fridge now - memorabilia) that allowed me to jump the queue at the Emergency Department. Flashing that card (in theory, assuming there weren't muppets on duty) got me straight into the emergency departments isolation area, on a broad-spectrum antibiotic drip (without waiting for proof I needed it) with a big range of tests being run while they waited for someone from either Oncology or Immunology to come and play with me. S. I. C. K.

I am not all better. I have another three years of oral chemotherapy. I'm still highly fatigued, I can only do about twenty minutes worth of light *work* before I have to rest for considerably longer than twenty minutes. The more I try to do, the more I risk spending the next day or more in bed. So I have to be careful with my spoons. My daughter gets it, I really don't know what I would do without her sometimes. She picks up my slack without complaint, I couldn't love her more if I tried. And yet somehow tomorrow I will.

There are so many other things I could address but I don't really see a whole lot of point. The message is simple. I had reasons for every decision I made while I was really ill. I did nothing lightly - I HAD FUCKING CANCER, DOING THINGS LIGHTLY GOES PRETTY MUCH OUT THE WINDOW. I was much sicker than I think a number of people thought I was - probably not the people who are reading this because the vast majority of people who bother to read this drivel also read most of my other posts and had a pretty good handle on how fucked up I was. And how fucked up I still am. I'm getting there. I'm starting to lose the weight that all the extra meds put on me. I fit size 12 jeans again. There are other things I could address but I feel like it's simpler to just not give a fuck - I mean if the people this is aimed about give that few fucks how many fucks do I need to give? (I say this like I'm any good at stopping giving fucks about people... I'm fucking dreadful at stopping giving a fuck about someone I love. Once in my heart always in my heart. I mean my brother drives me stark raving insane but that doesn't stop me from loving him. It just makes liking him complicated. I've been let down many a time, several times I've tried to convince myself that giving up on them is the answer - but I know I can't. There's no point pretending. I'm a huge marshmallow. Screw it.

Peace. Out.