Anna Donald on the joy of carers and nasogastric tubes

Anna Donald I’m lying in bed at 4 in the afternoon drinking Yakult. The little pot of yoghurty bacteria, recommended by a friend. I have no idea if it will help my grumbly tummy/abdomen, so, like so many things, I’ll give it a go and see. I still have mucositis from my mouth right through my gut, making eating hazardous and throwing up an embarrassingly common and unpredictable event (for example, in my carer’s car). I’ve started to carry little plastic bags in my handbag, just in case.

And – I have a carer. Three, in fact, for different days. These wonderful women appear at our door at 9am and do all the things I can’t for the time being – like clear up the kitchen, do the never-ending pile of washing, iron, tidy the lounge room, take phone calls and let people in and out, and make me endless cups of tea. Drive me to the shops, or do the shopping for me. They also keep me company. It is enormously comforting having another presence in the house when you’re in pain and feeling desolate and, occasionally, despairing.

The source of my low-level misery is abdominal pain which I’ve had more or less constantly for the past eight weeks. It’s blunt, gripey pain that makes me wretch, even though there’s rarely anything to bring up. It makes eating and car journeys hazardous, though I’ve managed the latter fairly well, armed with plastic bags and Wet-Ones.

The most frustrating thing is not knowing when it’s going to strike and what’s causing it – and therefore what to do about it. Scans have more or less ruled out abdominal metastases (yay!). I’ve been taking anti-ulcer drugs, so gastritis or stomach ulcers (possible, after the blast of chemotherapy) seem unlikely. Pain killers don’t work very well, including anti-nausea drugs that I have previously known and loved, like domperidone and haloperidol. Serious opiates: morphine and oxycodone usually relieve things, but not always. The weird thing is that the best antidote is a bout of wretching. It’s as if there’s this great big peristaltic wave that starts way down in my gut somewhere, and like an ocean wave, breaks when it reaches my throat. Then it’s all over. Until the next one comes along. Which is entirely unpredictable, seemingly unrelated to food intake, position, distractions, or anything else.

It’s possible, I suppose, that the persistent tummy ache is due to the inflammation still affecting my mouth, albeit much reduced from a few weeks ago. Perhaps the waves are due to my nasogastric tube touching something that triggers the gag reflex. But that doesn’t explain the hour’s build-up to the wretching. In any case, I’m just hoping that it will eventually subside. Abdominal pain (I suppose like all pain) is very debilitating. Often after a few hours I just fall asleep wherever I’m sitting or lying and wake up to find the day gone.

I haven’t mentioned the Chinese herbs I bought last week, which my mother is very nervous about, having had a friend who ended up in intensive care with renal failure from taking them. They did make me very sick the next day, then much better the day after. Who knows. I really really wish someone would produce a directory like the BMJ’s Clinical Evidence that charts what we know and don’t know about such treatments. The array of options and suggestions for healing cancer is so overwhelming, with enthusiasts insisting that their treatment is the right one. My fifteen years in evidology (EBM) taught me how horribly wrong we can be about treatments, in both directions.

In the same vein, next to our bed is a deep window ledge with a big box of other things I’ve tried. It’s amazing how almost every doctor has a different prescription for the same problem (abdominal upset), with very little overlap. It seems as if I have every pain killer in the pharmacoeipia.

I’m writing all this not to gain sympathy so much as to describe the frustration of many people with cancer (and, no doubt, other chronic diseases) at not being able to control symptoms, on top of not being able to control the disease or treatment and the feeling that your agency is slipping away.

That said, things aren’t all bad. There are the carers, my gorgeous friends and family, and lovely readers who continue to support me through so many kind, thoughtful and useful comments. I really feel as if I’m carried along by this amazing international group of loving people. I can’t tell you what a difference it makes to hear from people all over the globe, especially when you’re chained to your bed and food pump.

Also, I can now eat (in no particular order) boiled eggs, hot chocolate, lettuce, poached fish, Cornettos, lemon lime and bitters and crisps (I polished off a large packet in a rare visit to the pub on Sunday afternoon).

I still have the nasogastric tube swinging before me like a bizarre trunk, to the delight of my little cousin (who is spending Christmas in the apartment above ours, which her family has rented from my neighbour) and all other children, it seems, who desperately want to tug it and love the idea of playing with an elephant-person. Cuddling babies has become something of a hazard, as they all reach with great enthusiasm for the NGT and it’s not so easy to get them to release it. I’m very much hoping to lose it by Christmas day – three days away – if I can convince my doctors that I’m eating enough not to need it. One of the problems with the nasogastric feed is that its steady drip of calories diminishes your hunger and incentive to eat. But I’ll do quite a lot to be rid of the nightly harnessing to the pump and daily presentation as Pinocchio.

Have a wonderful Christmas and New Year, with love.

Anna Donald