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Anna Donald on the joy of carers and nasogastric tubes

22 Dec, 08 | by BMJ Group

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

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  • Tom

    Woman can live on Cornettos alone, surely!
    Besos y amor.

  • http://annadonald Vivian

    Dear Anna, I awakened this morning with you in my awareness. We don’t know one another but you’ve touched me. This blog expresses well much of my medical journey and I’m grateful you are writing it. More than anything, I wished the doctors could know that under the emaciated body, the dreadful sicknesses, there was a real person who thinks, feels and is ALIVE, no matter how ill the body. I often felt I was just a body in the bed, a blob in the waiting room, a medical statistic. By writing this blog when so ill you show that lucidity and spirit exist in illness. Where there is breath indeed, there is life.
    I experienced the symptoms you describe – the gripping guts, the sudden throw-up not related to food (seemingly). I took a bucket with me everywhere. A blue one. My experience may be of benefit to you or someone else who reads this blog. It was finally discovered I had become lactose intolerant and much of what I ate to settle my guts was milk based (there is also lactose in lots of anti nausea drugs). I also found too much soy upset the guts. I finally started living on Ensure (from the chemist in Oz) a milk free food substitute drink. Good for the nose tube (though I do hope you are through with that). I also found stemetil suppositories very helpful. I cut a 5 mg in half and use that to calm things down without making me sleepy. If I need more, I just insert the other half or more. If really sick and can’t stop throwing up, then I get a stemetil shot that puts me to sleep and settles the whole mess down but I try to use less than the usual amount as it leaves me foggy the next day.
    I have noted with my mindfulness meditation that while I can ‘watch’ most things and there is some relief, nausea does not have a point of origin and I never find relief with meditative awareness. Nausea just arises and a throw up happens without warning. Nausea is a dreadful malaise.
    The other thing I have found with guts is that slippery elm (1 tsp in a bit of water and swallowed quickly before it turns gluggy) seems to have helped the gripping but I have to take it each bedtime and it took a few days to make a difference. (I am not a medico but I think my guts grip on themselves when they haven’t anything much to push along due to lack of solid food.)
    Like you, I have an arsenal of remedies of all sorts but thankfully, I don’t need them so often now. Gradually I found what worked for me and I hope you do also. The final thing, I found the dreams seemed to heal me from inside out without me having to do anything. May your Christmas be blessed.
    Metta, Vivian

  • http://www.semeioticabiofisica.it Sergio Stagnaro MD

    Dear Anna,
    your words are, once again, paramount fuel to my vacillating enthusiasm, nowadays not so great as in the past. I’m sure you can understand what I mean, in spite of my poor English.
    I thank you very much.
    During my 43 year long work, as GP, I have been saying to my patients, that we physicians have a limited power,unfortunately, but GOD is able to do everything!

    Buon Natale e Felice Anno Nuovo

    Sergio

  • http://www.bazian.com Ceilidh

    Dear Anna

    So glad you are home and back at your computer. I thought a lot about you during rare moments of cogitating and peregrinating in Devon recently; with some anxiety that I might be missing your recent postings. Wonderful to be reading your words again.

    (Thank you too for our hamper of delicious goodies…)

    Lots of love to you over the holidays.

    Ceilidh

  • Neelima

    anathor interesting blog from you Anna.Keep writing

  • Dr.Viveck Atheya

    MANY HAPPY RETURNS OF THE DAY,ONCE AGAIN

  • Suzanne

    Dearest Anna,

    I had missed you these past few months as we had lost contact, and then I discovered your blog and have been reading the ‘reruns’ and catching up on your life for the past several months. Thank you for writing, for sharing, for being so candid and so full of ‘you’ in all this. You are contributing more to the universe of cancer than all pharma companies combined.

    Sending you all of my love and love to Michael as well.

    Suzanne

  • Karen

    Dear Anna, So sorry to hear what an awful time you have been having lately. It puts me to shame for moaning and groaning about my late pregnancy woes. Take good care and be gentle. Lots of love and huge hugs. Karen xxx

  • Dr.priya thorat

    Dear Anna
    I hope and pray that you are feeling better.
    happy new year!

  • justin jewitt

    Anna

    Hope you had a super Xmas. Its good to hear the progress you are making, and how much insight you have into yourself, your disease and life itself.
    What makes a good carer for you? I have got a reasonable sized home care business established so your views on any actions/traits both good and bad would achieve improvements in care for many others.
    I believe that the fundamental need for a care worker is to CARE but they need to be trained in how to provide the right actions at the right time for people with different needs ( and strange food tatses!).Give me any help/advice/thoughts on how to get this right and I promise you I will introduce it to over 500 careres in the UK.

    Very best wishes for 2009

    Justin J

  • geraldyn.jackman

    Dear anna

    may i wish you from a cold Ireland, A happy happy new year. I wait anxilusly for your blogs and enjoy everyone.

    May you and yours have a great new year

    Geraldyn

  • geraldyn.jackman

    It seems I cant spell very good either Anna

    Geraldyn

  • Ruth

    Anna! Im so glad Ive found you in here somehow connecting with us all, my beautious love! I have to tell you that tho I totally get the unbelieveable agony and unrelenting details that you are constantly human being-your sense of humour is palpable in each entry recently and it is quite astounding in itself. You well know its really easy to discern someones emotional state just by sensing through the written word. I love you I love you I love you.

    Yes the confusion with remedies/medics I totally can get.
    I’m having a beaut time with the Bruno Groning heilstrom method which really surprises me. Its not so much making a physical difference…I believe the epsom salts/oil is-tho i still cannot help Harry there. But mental emotional relief is truly apparent, I feel energy shifts during and afterwards especially in my heart but mind too, I can currently live with our symptoms rather than in resistance to them and its like a reclaimation of self.

    Anna Ive been perenially such a resistor to the moment that I truly take heart from your capacity to include us and the whole of the medical model in your debilitating state. You are a living gift of love!Thank you its very hard to know what to say, you live so fully so fully…

    Im organising a Byron Katie w’shop down here in Feb with my fab teacher Rosie. Ive so missed my regular group in Canberra this past year…maybe we will create a regular group down here? I do the Bruno Groning Circle of Friends work solo and meet up with them on phone/online.What Ive found is I have an easy sense of gratitude around it and thats gotto be healthy!love love love Ruth

  • Ruth

    Hey! Bring on a New Year!xxxxxx

  • sam

    Dear Anna
    I hope and pray that you are feeling better.
    happy new year!

  • Justin

    Anna – i’m so glad you’re back blogging and got home for Xmas. Happy new year from me, Polly & the girls and thanks for those lovely books. We miss you!

    Justin

  • http://annadonald Vivian

    Hi Anna, I think of you each day, often in that change between sleep and wakefulness. I truly hope you are beginning to feel better as this new year has come. When I was so sick it was at the time that all seemed the very worst that was the change point to health. I remember calling the Cancer Care nurse and saying, “Do people ever feel better than this? Does this chemo help people get well?” “Yes,” she replied,”they do.” And it did help me to hear the surety in her voice though I felt so utterly bad. I got well and I think it was partly totally relaxing into being ill that helped the other come about.
    I’ve never written to a blog like this and trust my replies are not too long winded, but I remember how awful I felt and how much I wanted to hear from someone that it is possible to get better. It IS possible. Metta, V

  • m

    Anna you won’t remember me but you did teach me in Oxford about 8 years ago. You were very inspiring and my professional life changed as a result.

    You are still inspiring and I am now a teacher currently preparing a learning unit on ‘deconstructing evidence-based practice’. I will be leading my students to your blog.

    Keep writing and keep well.

  • Suzanne Marks

    Hello Anna Darling: It is so good to find you again on your blog. I offer you (belatedly) the blessings and hope of the Christmas season – and fun and fulfillment in 2009.

    I keep you close in my prayers and meditations every day and alway swathed in the green light of healing.
    Janet and I had dinner last night. The first time in ages we have been able to catch up. It was such a delightful time. She loves you so dearly – as do I.

    With love

    Suzanne (Marks)

  • Belinda

    OK So if you can do Cornettos and you can do Lemon lime and bitters, maybe you could manage a pine-lime splice? OR a mango weiss bar? Or a lemonade icy pole? I could murder one of those about now myself. Putting your name up there every night girl. Urging the healing to come down. Love love love. B.

  • http://www.foodtrendblog.blogspot.com Ruth

    Hi Anna its midnight Im up on the putie and Im thinking of you loads of love!xxxxxxxxxRuth

  • http://www.foodtrendblog.blogspot.com Ruth

    love love love,my little possom suddenly asked about you last night before bed, it was very sweet his concern and so we sent you our love together.

    XRuth

  • Anna Donald

    Cor blimey, ……. reading your blog on the joys of …………
    I can only say, YOU are the joy.
    (the other) Anna Donald

  • Michelle

    Hi Anna,
    Reading your blog always makes me stop to think and reflect on life, and most of all to appreciate things. Thank you for your sharing your wisdom and humour with us all, a truly remarkable thing to do.
    I hope and pray that you are peaceful despite all you have been through – you are so very courageous.
    Love and prayers for you,
    Michelle

  • Tom

    Anna is leaving us.
    Please pray for her.
    Tom (her brother).

  • Sarah Godwin

    Dear Anna and family
    Praying for you tonight. God bless you. Sarah G

  • Luis Gabriel

    Tom, our prayers remain with Anna, our thoughts with you the loving family and friends she is so proud of. We are very priviledged of being touched by this inspiring woman and entering a wonderful international network of people who feel touched by her wise lucid and very humane comments.

  • Sam

    Tom, our thoughts are with Anna and her family and friends. Anna is a truly wonderful person and Luis Gabriel is right, we are priviledged to have known her and been able to call her a friend. Much love. Sam & Steven

  • http://annadonald Vivian

    Dear Anna, I know you won’t read this but I want to say to you how much you have touched me through your soul filled writing of your experience of advanced cancer. I have laughed and cried with you in these blogs. So many obstacles you met with courage and humour; the brightness of your humanity! I wish you peace and my prayers are with you and your wonderful family. Vivian

  • Diana

    Vale dear one.
    Lots of love Diana

  • Lesley

    Tom,

    Anna has been such an inspiration to so many – I feel privileged to have been able to share her experiences.
    Even if she is ‘gone from our sight’, as Henry van Dyke put it, her influence will live on in the lives she has touched.

  • Diane Fowler

    Dear Anna, you are in good company as you leave us. Debbie Bertaud, a fellow cancer sufferer who contributed to your blogs, passed away on 30 January. I hope as you journey onward you will meet her in person. Two bright spirits. I can only hold you both, and all your loved ones, in my prayers.

  • Emma

    Dear Anna,
    I am so very humbled to have crossed paths with you and will forever be grateful for our meeting. Your courage, incredible wisdom, ability to love and your humour have been an inspiration for so many and your discoveries along your journey will support and help others for many years. You have been, and will continue to be, a true gift to the healing community. Holding you and the family you love so much in my prayers and thoughts as always.
    Much love, Emma

  • Michael

    Anna died on the morning of 1 February, Sydney time. She was surrounded by her family and by the prayers and thoughts of her friends around the world.

    Anna took great comfort and encouragement from the comments made on this site, and her blog was one of her great delights over the last few months. Thank you to everyone who has taken part.

  • Rob

    Goodbye to a truly exceptional and courageous woman who deeply touched so many who met her.
    Michael, my heartfelt thoughts are with you.
    Anna, the world will miss you.

  • http://annadonald Vivian

    Many blessings to you Michael. I’m so sorry. Vivian

  • Helen

    She glowed in life.
    And will continue to do so.
    Helen

  • Francis and David

    Just heard the sad news. Our thoughts are with Anna’s family – Janet, Tom, Michael – thank you Anna for your love. Francis and David

  • Jean Martin

    Dearest Janet, Tom and Michael,
    Just received Michael’s email this morning. Anna graced the world with her amazing indomitable spirit — in my conversations with her over many tea cups, dim sums, chocolate bars and emails, she made everything seem possible and with her, it always was. I will miss her so.

    With warmest love to you all,
    Jean

  • Margot Wood

    Dear Janet, Tom, Bruce and Michael,

    I just heard the sad news, and am so sorry. Anna was my best friend during primary school years , and all these years later I still think of her (and her family) fondly and often. My thoughts and heartfelt wishes are with you all. My parents , John and Yvonne, send you their sympathy and best wishes too. She will be sorely missed by so many.

    Love Margot

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