The last few months our family has been almost completely consumed with trying to cope with the ramifications of my cancer treatment. This has meant a lot of different things for each of us, and I don't know that any of us were able to be fully prepared for what the journey would entail. This is partly because there is no way to know exactly how you're going to react to chemo - everyone, it would seem, has a slightly different experience. But it's also, I think, because even though there is a lot of information listing the specific side effects for each of the chemo drugs, nothing I found actually describes what it's like.
|Showing off my no-boob scar whilst being treated for nutropenia after my first chemo dose.
I've had a phobia of chemo for years. I always thought that if I got cancer, I'd forgo chemo. But, when faced with my diagnosis, and the statistics around my different treatment options, I made the decision, ultimately for my family, to go ahead and have it.
And it's been surprising. And because it's been surprising, and not really what any of the literature says it's going to be like, I wanted to write a blog post about my experience in the hope that it helps someone else go into the journey a little more prepared. For those of you who read this blog because you like good food and/or information about natural building and/or farming stuff and/or craft, this may or may not be interesting for you. I hope you all understand my reasons for wanting to share this aspect of my family's journey in this forum - this blog is about our life, and at the moment our life is a lot about chemo.
Because of my chemo-phobia, after I made the decision to go down this treatment road, I read pretty much anything I could in an effort to know what I was getting myself in for. What I've since learned is that a list of side effects doesn't really help you to understand that what it actually feels like. For example: "nausea and/or vomiting" should probably say something more like "the worst flu you've ever had combined with a really terrible hangover that lasts for a week or so". Similarly, "Gastrointestinal upset" actually means "someone has poured some full-strength Drano down your mouth-hole and it's shot straight through to the other end", and "diarrhea" means "get yourself some nappies - you're going to need them".
When the list says "tiredness and fatigue", what it really means is "complete exhaustion to the point where having a brief conversation with someone will make you feel like you've just run 10km (but don't expect to sleep properly because you're going to be totally pumped up on steroids)". When it says "metallic taste and/or taste changes" it means "everything in your mouth, including your taste-buds will shrivel up and die, so that everything you eat tastes like boiled choko". "Mouth ulcers" means "more Drano effect".
Then there are the 'minor' side-effects, listed as things like "brittle fingernails", "nosebleeds" and "hair loss", which actually manifest as "feels like every single fingernail has been hit very hard with a hammer", "torrential outpouring of blood requiring a towel to fully curb the flow (and rock-hard boogies when it's not bleeding)" and... well, hair loss. That's actually the only one that's been as I anticipated.
Similarly, when the side-effects list says "low white blood cells", and the chemo nurse tells you with no small degree of seriousness that any kind of fever means an immediate trip to hospital, no-one actually says that when you get to hospital at 2am you'll be admitted into an isolation room, bubble-boy style, and given intravenous antibiotics for 48 hours. People who come to visit you during this time have to wear gloves, masks and gowns because you're so immuno-compromised.
|Kids visiting the isolation chamber
These attractive side effects last for about a week after each treatment, though the last dose hit me harder and lasted longer, and it's likely that my next dose will be even worse. I'm also currently processing a barrage of pre-medications that are being administered in conjunction with the chemo drugs after I had a particularly nasty reaction to my second dose. The reaction, apparently, was my body's way of saying "Hell no!" to the chemo drugs, so now they drug me into submission. These submission drugs add a foggy, chemical-y hangover to the mix of chemo side-effects. Fun times.
But I think by far the most challenging thing for me has been psychological, and has resulted from my inability to come peacefully to terms with the fact that my body just isn't working properly right now. This has in turn made me realise how much I took my fitness and general good-health for granted. I rode my bike, I did farm stuff, I carried 20 litre water barrels and bags of chicken feed all over our land, I carried my kids around and I built stuff. Now I need a lie-down if I do so much as a load of washing up, and I go for days and days without even walking out to the paddock to look at our chickens, and sometimes it all just makes me cry because I miss being able to do all the stuff that makes me me.
|Less than 48 hours post-mastectomy, we were out in the paddock being photographed by our exceedingly talented friend, Eryca Green
The physical changes - the loss of my left breast and the loss of my hair - have been remarkably easy to come to terms with. I suppose it's been interesting in that the whole experience has definitely highlighted what's important for me, which is most certainly functionality over form: I've quite embraced being a bald, one-boobed lady, but I don't know that I'd ever fully embrace complete and utter fatigue.
Ultimately though, I believe that the whole experience will prove to be a positive one, above and beyond the mere practicalities of killing off errant cancer cells. It has been profoundly and deeply humbling for me to be so completely vulnerable - to see my beautiful Pearl working so hard to take care of us all, to see our amazing community, our friends and family helping us in so many and varied ways, to let go of my pride and just accept that people love me and are happy to take care of me, and that it's OK to not be super-strong all the time. And hey - I've developed some pretty sweet crochet skills and done a ton of reading, so it's not all bad.