{"id":544,"date":"2008-12-22T17:40:17","date_gmt":"2008-12-22T16:40:17","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=544"},"modified":"2008-12-22T17:40:17","modified_gmt":"2008-12-22T16:40:17","slug":"anna-donald-on-the-joy-of-carers-and-nasogastric-tubes","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2008\/12\/22\/anna-donald-on-the-joy-of-carers-and-nasogastric-tubes\/","title":{"rendered":"Anna Donald on the joy of carers and nasogastric tubes"},"content":{"rendered":"![\"Anna](\"http:\/\/www.bmj.com\/channels\/icons\/anna_donald.jpg\")
I\u2019m 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\u2019ll 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\u2019s car). I\u2019ve started to carry little plastic bags in my handbag, just in case. <\/p>\n
And \u2013 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\u2019t for the time being \u2013 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\u2019re in pain and feeling desolate and, occasionally, despairing.<\/p>\n
The source of my low-level misery is abdominal pain which I\u2019ve had more or less constantly for the past eight weeks. It\u2019s blunt, gripey pain that makes me wretch, even though there\u2019s rarely anything to bring up. It makes eating and car journeys hazardous, though I\u2019ve managed the latter fairly well, armed with plastic bags and Wet-Ones.<\/p>\n
The most frustrating thing is not knowing when it\u2019s going to strike and what\u2019s causing it \u2013 and therefore what to do about it. Scans have more or less ruled out abdominal metastases (yay!). I\u2019ve been taking anti-ulcer drugs, so gastritis or stomach ulcers (possible, after the blast of chemotherapy) seem unlikely. Pain killers don\u2019t 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\u2019s as if there\u2019s 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\u2019s all over. Until the next one comes along. Which is entirely unpredictable, seemingly unrelated to food intake, position, distractions, or anything else.<\/p>\n
It\u2019s 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\u2019t explain the hour’s build-up to the wretching. In any case, I\u2019m 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\u2019m sitting or lying and wake up to find the day gone.<\/p>\n
I haven\u2019t 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\u2019s Clinical Evidence that charts what we know and don\u2019t 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.<\/p>\n
In the same vein, next to our bed is a deep window ledge with a big box of other things I\u2019ve tried. It\u2019s 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.<\/p>\n
I\u2019m 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.<\/p>\n
That said, things aren\u2019t 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\u2019m carried along by this amazing international group of loving people. I can\u2019t tell you what a difference it makes to hear from people all over the globe, especially when you\u2019re chained to your bed and food pump.<\/p>\n
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).<\/p>\n
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\u2019s not so easy to get them to release it. I\u2019m very much hoping to lose it by Christmas day \u2013 three days away \u2013 if I can convince my doctors that I\u2019m 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\u2019ll do quite a lot to be rid of the nightly harnessing to the pump and daily presentation as Pinocchio.<\/p>\n
Have a wonderful Christmas and New Year, with love.<\/p>\n
Anna Donald<\/p>\n","protected":false},"excerpt":{"rendered":"
I\u2019m 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 […]<\/p>\n
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