Six weeks of Chemo

The point of this post is to give an honest account of my own personal experience with intravescial mitomycin treatment for superficial bladder cancer. Hopefully to provide some reassurance to anyone potentially going through or preparing to go through something similar.

I wasn't excited at the prospect of starting my 6 week course of mitomycin but I had no idea how much it was actually bothering me until the weekend before my first treatment.

My treatments were every Monday morning over at Calderdal Royal Infirmary and for the first two Sundays I got completely off my face smashed on red wine, before lying awake all night sweating about the following morning. It was at about 4am on the first morning that I realised maybe I wasn't coping with this as well as I could be!

I would strongly urge anyone about to undergo this treatment that this is a very bad idea! Not least because you are not allowed to drink anything for 4 hours before your treatment and a hangover with no water is a little bit painful.

Week 1: Despite my urge to throw up, sleep and/or eat a lot of melted cheese the morning of my first chemo session it was actually pretty painless and all my worry had been a waste of time. The biggest thing for me was the mental battle, and being tense definitely doesn't do you any favours when having this procedure. But once you get over the idea that your bladder has just been filled with poison week 1 was pretty plain sailing to start with.

I was mainly worried about making sure Oscar was safe and I couldn't contaminate him with any nasty drugs. Obviously I’d had to stop breast feeding around the time of my first surgery so for the most part it was just a lot of obsessive hand washing and pouring endless amounts of bleach all over the bathroom.

Week 2 and I started to notice a few more side effects, mainly tiredness and a few aches and pains, but nothing that a hot water bottle couldn't fix. I was warned that the symptoms tended to build as the weeks went by as the drugs built up in your system and so far I can definitely say that this is true.

Mainly it’s tiredness, a little like coming down with the flue, your arms start to feel heavy and achy and you just want to chill out and watch TV. Something I find really hard to do but I'm trying my best. It’s particularly frustrating as I had just got into a bit of a fitness regime and was already one stone of baby weight down by the end of January, but I'm making myself sit tight and focusing on what’s best for my body right now.

By week 3/4 the tiredness was definitely becoming much more noticeable. I felt groggy almost instantly after installation and my limbs and joints felt really heavy and achy if I tried to do too much. My iron levels also plummeted around this time, I'm borderline anaemic and this week they dropped low: cue breathlessness from just walking upstairs and a constant headache.

Week 5: As promised, the symptoms build as the weeks go on and by the evening of week 5 I was a bit of a pathetic mess. Curled up on the sofa my head felt fuzzy and a bit dizzy, there was a dull ache in my stomach and lower back, I was hot, grumpy and unable to decide if I wanted a bubble bath or a bucket to be sick in. Filled with both fear and relief that I only had one treatment left, I quickly cancelled all plans for the following Monday/Tuesday and went to bed very early.

Week 6: I think because I had a bit of a rough week 5 I built up week 6 in my head quite a bit. In reality it wasn’t too bad because I’d already resigned myself to feeling low and being forced to take it easy. I was tired, I felt a little dizzy that evening and I was so tired for a couple of days but all in all the happy feeling of it all being over, at least for the time being out weighed everything else. I even managed to re-start some short work-out's by the end of the week.

At the start of treatment I was told it would be really unlikely I’d be able to complete the course all in one go, as getting infections is really common and things have to be put on hold for a couple of weeks! I feel very very lucky I didn’t get any at all, just some mild stinging when I went to the loo for a few days but that’s about it! Just make sure you drink loads and loads of water.

As annoying and slightly inconvenient as all this is, I feel like a total fraud when I tell people I'm currently having chemo. I feel so incredibly lucky that I only have such small side effects to deal with and my heart goes out to anyone facing full blown treatment.

If anyone has any questions about mitomycin then just get in touch with me and I'd be happy to talk :)

Thanks for reading,

Katie xxx