Keeping it real: the gross stuff

The purpose of this blog is to keep it real and to share the underbelly of the cancer beast with you. So, as promised, here is the post I've been delaying because I didn't know where to start - it's also not easy to share all these personal things but I did promise, so here goes. 

DISCLAIMER: do not read while eating or drinking, you might feel ill - some of these things are pretty gross! 👀

In no particular order of appearance, here are the side effects I have experienced the past year of chemo and radiation. New symptoms keep popping up all the time so this list is by no means final or definite, consider it a buffet sampler.

My skin started flaking and peeling off, it started on my scalp and slowly went down all the way to my toes. The itching was so bad it felt like the bites of a thousand fire ants and I sometimes scratched myself bloody in my sleep. It even attacked my face - you know when you get a sunburn how the skin peels off afterwards? Well it was doing that to my eyelids. My entire body was covered in dry, itchy fish scales. Every time I took off a piece of clothing there was a snowstorm and no cream or lotion appeased the misery. Has this resolved now? Well, yes and no. It comes in waves now and thank goodness my scalp and face are spared. When I can't take the dry flaking anymore I give myself a little break in daily chemo so my body can reset itself and then I get a break for a month or two before it starts again. 

Speaking of skin, I was warned that in the beginning my face would probably break out in an acneiform rash, which typically lasted up to three or four months. Never did I expect it would be so bad. I hid inside the entire summer last year in utter misery. Not only was it disfiguring, it was painful. It burned and pulsated, every few hours there would be more eruptions. The area around my mouth got it the worst but it eventually made its way onto my cheeks. Here's a picture of the first month when it began (I made the photo small because looking at it makes me feel awful all over again):

Next up is the hair loss. I was expecting it but when it started to happen I felt like a part of me was ripped away, which it literally was. Clumps and handfuls of hair at a time in the shower and dry hair everywhere mixing in with the cat hair made this girl a miserable one. When I had about 30% of my hair left I got my long blonde locks chopped off, I couldn't handle it anymore. Had I known at the time that reducing my dose of chemo would prevent this, my life would have been different indeed. Hindsight, yeah?

Then the constant dyspepsia, heartburn, nausea and vomiting. I'll spare you the details but it was all linked and it's controlled with medication now. I had so much acid in my stomach I would vomit with food in front of me, talk about weight control. 

I also had high blood pressure due to the monoclonal antibody treatments, it was so bad I was out of breath all the time, dizzy and exhausted. I couldn't climb up a flight of three stairs without wanting to pass out. I'm on three different medications for that now and it's controlled.

Mystery bruises. Every few weeks I wake up with unexplained bruising on my legs and sometimes on my arms. I look like I took a tumble down the stairs. I guess this is a way to describe chemo: it beats the shit out of you. Example:

Diarrhea and constipation oh yeaahhh! The fun stuff! I think the past 12 months I've been "normal" for about a total of three months altogether. It's either running like a river through my ass or it's a dam, blocked solid for days on end. I think my record was 12 days of blockage. It's not pleasant when the dam finally breaks, let me tell you that. It's not pleasant either forgoing outings because you need to be close to the toilet lest you shit your pants. This is still an ongoing battle. Ugh.

Are you still reading or have you had enough? Cuz there's more... if it's awful to read, imagine how bad it is to live these things. It's like my body is going through science experiments from Planet X or something.

Nail issues. At one point my big toenails got so infected it hurt to walk or to wear socks. This lasted for about two months until my body finally found the strength to fix the issue. The nails on my hands were fine up until two months ago when they decided to go limp and frail, splitting up beyond the skin and yes it's painful. I've had to adopt a whole new way of pulling on my pants or touching anything. This is an ongoing battle.

Random eye tearing, this is a newish thing. One eye will decide to leak like a faucet for no reason so it looks like you're crying lopside. I'm the queen of tissues.

Vision changes... I need glasses now to see near and far - everything is blurry. I was told this isn't permanent and when I stopped chemo my vision would return to normal but if I stop chemo I'll die quite quickly, so I'm not sure what to think of this one.

Voice changes. I've lost my normal voice the moment I started treatments, I sound like a croaky old granny all the time now. And if I have normal conversations for longer than a couple of hours I go hoarse. It really sucks, I feel as if I am losing the ability to communicate.

Constant leaky nose and random nosebleeds. Self-explanatory. I should invest in Kleenex stocks, I'd be rich in no time.

Fountains of saliva. This one bothered me particularly much - for about two months my saliva glands decided to go Olympic for no reason from the moment I'd awaken to the time I'd go to sleep. I'd have to constantly keep swallowing or risk drowning myself in my own spit. It was gross and if this crap comes back I'll go bananas.

Intense fatigue. No matter how many hours of deep sleep I get, the exhaustion never goes away. I'll have short periods where normal energy comes back and it feels like a victory of sorts, then bam out of the blue I need to lay down or pass out. For someone who battled insomnia her entire life this is really weird. I sleep anywhere from 10 to 14 hours a day and it's never enough.

And the worst one: the physical pain. Since January 2022 I've been living with a fractured pelvis, the burning, searing, throbbing pain has become steadily worse as the months have ticked away to the point that I cannot walk or stand for longer than 10-15 minutes at a time now. I have a handicap vignette for my car and a wheelchair, how embarrassing is that? There is no sleeping position that's comfortable despite pain meds, some morning it takes me ten minutes to get out of bed by sheer determination (and a full bladder lol). I am afraid of what's coming next when the pain starts to spread to other areas of my body. I'm a wimp.

I'm not even touching on the issue of depression and feelings of guilt - that merits an entire post by itself.

So these are just some of the side effects people on chemo and cancer treatments experience. Each patient is different and treatments are tailored to the type of cancer, its stages and the patient's own physical restrictions.

I did say at the very beginning of this blog that it would be an honest, open and frank snapshot of my journey through this illness. If you have questions or would like me to write about a particular aspect please let me know, this blog is for me but it's also for you, my dear readers. 

Until our next meeting, be well xxx