Member story: the side effects I wasn't expecting

I was diagnosed with breast cancer in 2014. It was all a bit of a whirlwind and I got put onto chemotherapy very quickly. Chemo wasn’t particularly kind to me, so I rested all the time and lost a lot of weight as a result. Six months after I finished active treatment I passed out at home lying on the bed. I didn’t think it was anything to worry about at the time, but I mentioned it to my GP and she did some tests and found out I had cardiomyopathy.

It is a kind of heart muscle dysfunction, which means that the chemo had impacted the way my heart pumped blood through my body. Having cardiomyopathy has impacted my life on a daily basis. I don’t have the energy levels that I used to and in recent months I’ve had to stop working while [my medical team] tries to figure out a way to stop it getting any worse. I don’t bath or shower unless there’s someone else home because I’ve passed out in the shower before and hurt myself. Little things that I took for granted now mean I have to give more thought to. I also struggle more with fatigue and being out of breath.

While I have developed “chemo brain”, I found it easier to deal with than the cardiomyopathy. I have become the queen of lists! I got to the point where even at work I would have to write down everything I needed to get done in a day because I’d forget something and often it was something important. Or I’d get halfway through a sentence and end up fumbling through the rest of it. Out of all the side effects I suppose it’s the one that’s easiest to get around by writing it down and having visual cues for things all the time.

I’m very lucky that my medical team have got lots of other people they speak with to try and find out more answers. Whether it’s the cardio team, my GP or my oncology team, they’re all speaking with each other to make sure I get good care. I’ve learnt that it’s important to be proactive with your medical team post treatment with side effects that are interfering with your life. You can’t afford to ignore any of them. So if you build up a good relationship with your team you can ask if your symptom is something to be concerned about. If they say “No” you can go away happy. If they say “We might get it checked out” at least then you have that confidence that it’s being dealt with appropriately.

Issue 85
Summer 2019