12 Dec, 08 | by BMJ Group
It’s been a bit of a rough five weeks, as readers might have guessed from the protracted absence of blogs. Apparently I was “overdosed” on chemotherapy and ended up in hospital for 4.2 weeks. Which is four weeks too long. Though to be honest, I was so out of it during the first two I could have been anywhere. I just remember a blur of nurses, nappies (!), being bundled into an airbed (which makes little scuffling noises as different air pockets are inflated beneath you), and constant visits from my devoted family and friends who loomed over the bed, some with horrified looks.
The looks were justified, I realised, when I eventually saw myself in a mirror. Because my platelets dropped so much (among other things, like albumin, which still hasn’t fully recovered), I started bleeding from my eyes, nose and mouth. My face, hands and feet also went a deep purple-red. So much so I was visited by a professional photographer to take pictures for future medical texts illustrating an extreme case of the palmar-plantar syndrome. In short, I looked a fright. I’m used to being bald, losing my toenails and the like, but this was something else again.
The airbed was interesting. It was very soft and, like a benign creature from a bad sci-fi movie, it sucked you into its constantly changing folds so that it was impossible to get out unaided. I asked Mum to try escaping from it, and even she, with her super-fit Pilates and bell-ringing body had difficulty extracting herself.
Mum’s youthful looks (which she deserves, as being a campanologist is no joke – peals can last up to three hours) caused an election at the nurses’ station. First, there was a vote about whether she was my mother or sister (the sister theory won). Once it was established that she was in fact my mother, the second vote was about how old she could possibly be, given that I’m 42. I didn’t know whether to be proud of her or miffed by the nurses’ (and everyone else on the planet’s) assumption that she’s my sister, which doesn’t necessarily say much for my youthful looks. (Mum did have me pretty young). Worrying about looks while looking like a purple Frankenstein (I forgot to mention the new port-a-cath scar added to the collection) taught me that vanity can be a remarkably tenacious force. At least in my case.
The worst thing throughout the whole “episode” was a) the thought that it might have been prevented and b) mouth and gut pain. Six weeks later I still can’t eat due to mucositis in my mouth that extends all the way down. Most things (including water) that I try to eat end up in a (small, pink) bucket that I try to hide under the bed. So I am being tube fed. The liquid “food,” which I get a whiff of at the back of my throat, tastes like horse feed – a kind of chaff-like taste which isn’t exactly unpleasant, but it’s certainly not caviar. Still, it’s keeping me alive at the moment, so I’m not complaining (much).
As for the overdose, I was actually given a lower dose than ones I’ve tolerated in the past, but this one came back-to-back with about 12 weeks of oral chemotherapy. It seems as if my body just wasn’t up to another bout of chemo so soon – at least not at that dose. I don’t really see how my doctor could have guessed. I had a hunch it might be too much, but didn’t say anything. Mistake. One of the things I learned over the month in hospital is that you MUST take responsibility for your own care, up to a point. And that systems are vital.
I had truly outstanding individual nursing care. The vibe on the ward was excellent. Yet, the lack of systems resulted in a number of medical errors. For example, my drip feed (which also gives me water) was shut down twice for extended periods because no one noticed that the tube had become disconnected from me. The physiotherapist was requested but it took nearly three weeks for one to appear. My drug chart disappeared a number of times and drugs weren’t updated with doctors’ requests.
The gap between what nurses and doctors were authorised to do seemed very wide, in comparison to Britain. There are few nurse practitioners here and the conservative medical body (the AMA) seems to want to keep it that way. As a patient relying on nurses 99% of the time, I think this policy is bonkers. So do nurses, I discovered after many over-the-bed-pan (better than nappies) conversations.
As I’ve never been so bed-bound (literally) for so long, I had to learn fast that modesty isn’t something worth worrying too much about. If you can’t disconnect yourself from the machines that go ping and your legs are so swollen with fluid that you can’t lift your own weight (20kg on top of my 52kg non-oedema weight) and you’re getting regular injections in various parts of your anatomy, then you don’t have much choice but to accept whatever form of toilet, washing, and gown exposure is possible. The nurses were so kind and matter-of-fact about it all – I remain very grateful to all of them. (Not so the television-rental lady who, while I was half naked and being examined, held the door open wide and started her checklist: did I have a credit card or cash? How many days would I like a television? Which channels?)
Finally, finally, I was allowed to go home with promises to continue the horse feed and try to start eating. I’ve been hooked up with the attentive local palliative and community care team (at last) and my mother organised a full-time carer for a few weeks while I’m too weak to drive or to see people very much. I’m also nervous that if I fall over I won’t be able to get up again. The carers are wonderful – when they’re not perched on my bed they’re organising everything in the apartment. The linen cupboard was so beautiful I took a photo of it. Our plastic bags became an artwork when a carer tied them in little bows (I took a photo of that too). I’m a bit daunted – I thought I was pretty tidy but I doubt I’ll ever be able to match these women’s eye for order, when I’m back on my feet. In any case, I’m very grateful for the company and transformation of the house.
How people without money for auxillary services and, for example, three children and no husband cope following long hospital stays, is beyond me. I feel so lucky to have the incredible support from family and friends – I honestly don’t know whether I would have survived without it. But I have, and hopefully can now resume blogging.
I’ve been so touched by people’s response to my absence from the blog. Faithful readers, please accept my heartfelt wishes for the Christmas/Hanukkah season and thanks for being there.