Written in 2007, Me & Adam Ant records Louise’s first cycle with chemo and like everything else she wrote it is honest, warm and full of insight.
Chapter 7: The aftermath
It is now May 2nd and exactly 2 weeks since Day 1. I’ve not written till now for a variety of reasons a) because I felt like crap and b) even when I felt OK briefly I just couldn’t face writing. But now here I am sat in my garden in Edinburgh in the sun (wearing factor 15 ‘cos chemo makes you more sensitive to the sun – I’m choosing to regard this as a bonus as maybe I’ll get a tan this summer) and writing seems like a good way to pass the time.
I started feeling sick the evening of day 2… and then spent days 3-5 feeling awful, being sick (I went back to M’s on day 3 at 12am). I realised that it’s a good thing you can’t remember what it feels like to be ill as otherwise no-one would ever agree to this. I couldn’t do a thing. I couldn’t concentrate or talk or read. I just sat on the sofa feeling dizzy and sick and generally wishing someone would beam me up to a better world. I also for about 2 days very seriously considered giving up… calling the doctors and telling them I had changed my mind and wanted to stop now. But I didn’t. The other result of chemo is that my tongue developed a kind of white coating so I couldn’t (and still can’t 2 weeks later) taste. And the mouth ulcers came too, which are so sore it hurts if I sleep on one side of my face and also keep me awake at night. Joy.
Then today (exactly 2 weeks on) my hair has started falling out. It was weird. I was in the shower and had wet my hair and Al came to say bye. And the second he’d gone I started to wash it and my hands were full of hair. I wanted to call Al back. I just needed someone to tell. But he’d gone. And it’s crazy ‘cos I know it was going to happen but I wasn’t prepared. You probably couldn’t tell if you saw me today but I’m wandering how long it will take to all come out. In a way I’d like to shave it all off but then I wonder if I’d regret that.I just don’t know how I feel any more.
It’s been hard, these past 2 weeks especially. I finally started feeling better on Thursday (Day 9) and Saturday was almost normal. But then since Sunday (Day 12) until today (Day 15) Ive been feeling crap… it’s a bit like having flu without the temperature. I have zero energy. I find it hard even to move around the house a lot. And I feel shaky, literally.
And all of these things I’m telling you are just the physical effects. If I’m honest that has been much more of a mental struggle for me. I felt completely defeated on Day 3 and 4 when I realised I’ve got 7 months of this. Feeling so ill just makes you depressed. And even tho’ I’m not as ill as I was, now I feel muted. I’m even finding it hard to laugh or smile if I see something funny on TV. Perhaps it’s because I have no energy but I can’t be bothered even to collapse in tears.
Fifi and Mar came visit yesterday and Kate and Alex today and it’s even quite exhausting just trying to have a conversation. It’s insane. I just have to hope and pray it gets easier than this.
This was the last entry that Louise made in her journal. She would endure 13 major operations in all and go through a second 7 month cycle of chemo just a couple of years after this one finished. Along with radiotherapy and other treatments at various times as the adamntinoma continued to return. Throughout Louise never lost her positivity and fight. She died on May 19th 2013.