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Anna Donald blogging again

12 Dec, 08 | by BMJ Group

Anna Donald 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.

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  • Richard Smith

    I’m delighted to see you back. In some ways you are always around as I rarely have a day when I don’t talk to somebody about you, but it’s wonderful to hear your distinctive voice.

    And are you really vain? I don’t think that vain people write about their experiences with nappies and bedpans.

    Further, you make a very important point about doctors restricting what nurses can do when patients get 99% of their care from nurses.

  • Geraldyn Jackman

    Dear Anna

    So delighted to see you back on the web.. I missed your blog.

    Geraldyn

  • Tom

    YAY!!!!

    Hello Annie. Love you.

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

    Bentornata,Anna!
    You look very well; your mirror is mistaken, surely. Dont trust him. You know, I am an “aged” General Practitioner, thus I allow myself to suggest you – really, I dare to say…. – that Coniugated- Melatonin (if you approve it with a mail sent me privately, I’ll send immediately the phone of Italian producer: I take it since 5 years) can help you in raising platelet number, and in a lot of other disorders. In addition, I have meet nurses, who treated patients with ability and more humanity than some physicians!

  • Mai Luen

    Hey Anna,

    Good to see you back – give that youthful mom of yours a big hug from me – I can just see her engaging all her core muscles in an attempt to escape the clutches of the air bed!! I bet she (and you) are missing the cold over here.

    Take care and have a Merry Christmas.

  • Debbie B

    Dear Anna

    It’s so good to “hear” your voice again. What a ride you’ve had. I wince in sympathy when you mention mucositis (in my case it was caused by adriamycin). I was reduced to eating baby food (literally! my husband’s inspired suggestion), graduating to things like mashed avocado and liquidised versions of what the family was eating. Everything had to be between blood heat and room temperature, with hardly any salt, no acid, and very mild flavouring – you couldn’t call it seasoning!! I was lucky – only mouth and throat were affected and it only lasted a week.

    I was a bit horrified at the lack of systems you describe – we have had a big emphasis in it here in NZ over the last few years, and my limited experience suggests staff are very conscious of the need to follow them.

    As for how other people in different circumstances manage – well. I realised how little I’d thought about that side of it when a solo mum at a support group I went to was relating how she had to go on a benefit when having chemo, and had to buy groceries with government vouchers.

    I’m so glad you are home again and recovering. May your festive season be brightened by improving health!

    Debbie B.

  • http://annadonald Vivian

    Dear Anna, soooooo glad to see you back. I relate to the airbed thingo, when one is healthy it’s hard to believe those things can be so difficult. You are doing a great job educating the medical profession about the reality of being a sick person.
    For the mouth, I have found aloe vera (from the garden) helps. Surely someone you know has a plant – the pudgier the better. I cut off a chunk, peel off the outer hard part and rub the soft, squishy bit around all parts of the gums, cheeks and tongue. This is very soothing. The AV is a bit bitter but not bad. I would imagine when one swallows some it will heal all the way down. The other thing I’ve used for mouth problems is 1 tsp bicarb soda/1 cup water – swish around and this helps too.
    May you soon be eating and drinking again!
    Metta, Vivian

  • MArtina Gleeson

    I have been watching for your post, hoping you are OK. Every time BMJ updates there is the hope that you have been well enough to post.
    We can learn a lot from your insights. Your comment on systems is SO true. I would love to see how the nurse practitioners work in the UK.
    I hope you have a lovely Christmas and are well enough to taste your own turkey by then.

  • Hilda Bastian

    G’day, Anna!
    Xmas wishes back to you, Anna, and thanks for keeping the beautifully written messages coming. It’s hard to understand, too, why so many on the “non-patient” sides of health care still underestimate the impact of adverse effects of treatments. One of the other great things that nurses do, is a lot of the qualitative research that puts issues like this onto the table. But in the end, only writing like yours can have enough impact to really change people’s perceptions.

    You must surely be due a run of some good luck now after that. With a hug

    Hilda

  • Dr Anthony Papagiannis

    How lovely to see you back! I remember reading somewhere that a couple of generations ago most medical students had, by the time they entered medical school, already experienced either tuberculosis or malaria or typhoid or some other of the nasty diseases that were rampant in the Western world in those days. As a result they were much more compassionate towards their patients, and much more understanding of the nurses and other people involved in their care. I would not wish anybody to live misfortunes such as yours, but your blog descriptions make up part of the “deficit” in our experience of disease. Thank you, and have a speedy recovery and a happy Christmas!

  • kate kirkwood

    hello anna <> from across the world. i’m so glad to see you back.

  • Dr Wendy Naunton

    I am so glad to see you back, Anna. I love reading your comments on everything. I have a son frequently in hospital who is nonverbal (he has cerebral palsy) and is very interesting to hear your experiences with such things as airbed, that he often uses. Very happy that you are on the way back to health.

  • http://bmj shyla chacko jehangir

    anna, so good to have you back again.you have a loyal following who eagerly await your missives!your writing ,as always,inspires and teaches.for all of us physicians, its really good to have a patient’s perspective. its truly humbling to hear from ‘the other side’.
    i’m so sorry to be using cliche’s but they seem to be appropriate. i really hope your mouth gets better soon and you can start eating again.love the airbed story.i’ve stayed at friends’ who have an air matress and worried that they might have thought i was upto something dodgy while attempting to get out of it in the mornings!
    have a really good christmas with the family.

  • Helen Lawson

    Hi Anna,

    As others have said, it’s really nice to hear from you again. I had been getting quite concerned about the silence on the blog, so I was relieved to read your post and yet saddened to hear what you have been going though. I was heartened when I read that you’re on the upswing now and I do hope that you get back to your former self very quickly. Here in the US, nurses seem to me to do 99% of the work – a fact I don’t hesitate to share with my doctor sister and brother in law!

    Lots of love to you and Michael!

    Helen

  • Luis Gabriel Cuervo

    Hi Anna,

    I was delighted to find your blog active again last week and to learn that those bad 4 weeks are over. Hopefully they will soon be a bad memory for you, and you will be enjoying good times with your friends and family -although you may still have to deal with some weeks of colour-chages as the purple turns to yellow-greenish before fading away. I can anticipate that you will be finding something that will bring a bright side to it.

    I found the issues you raise about the imbalance between nurses and physicians most interesting and worthy of further debate; it is particularly powerful coming from “a consumer” who can better balance the added value each profession brings to its care.

    I was also touched by your comments about having to speak up to health care professionals when you feel things are not right; it is so complicated as one can easily get to alienate them and have additional “adverse effects” of speaking up such as being labelled a “difficult patient/relative” and then having the team and care providers challenging you. Tips of what has worked and what may work accross different settings is something that could be quite useful.

    I wish you a good Christmas and look forward to your next blogs.

    Luis Gabriel

  • http://www.bazian.com Urmila Bhatt

    Dear Anna
    It’s so lovely to have you back in communication. I have been waiting for your blog, checking BMJ website at regular intervals. I hope the adverse affects wear off soon and that you are able to eat again, very soon. Much love. Urmila

  • Ruth

    Oh! Anna!Ive been really wondering how you are…fcking hell!

    Ive had a descent into madness myself…my own not others tho! Ive found a group via the net http://www.bruno-groening.org
    Bruno Groning with an umlaut for the german speakers. I contacted The Bruno Groening Circle of Friends and one person from Melbourne rang me up, Stephanie, she took me through the healing process, then sent me brochure/newsletters now we meet every 3 weeks on net. But there’s regular meetups in person other cities. Hobart/Tassie has no meetup yet.All’friends’ are volunteers-many many doctors!

    Anyway its a spiritual healing method. Im using it every day for my wee creatures, however the results for my state of mind (side effect of living with this challenge past 3 years)is remarkable. Symptoms lessened certainly not gone, its a daily practice several times a day. But the mind relief is astonishing I feel normal,phew. The idea is receptivity to the divine healing energy. I call it faith healing and I was really feeling a total lack of faith in life and in particular medical model. So I thought ok first thing up I want faith! You basically ask Bruno Groening (not currently in a physical body!!!)for the healing and place body in receptive mode(uncrossed body parts open palms etc) and give burden up…(very christian mystic type idea to me)its important that I dont think on the creatures etc put it behind me type idea. Ive been obsessed with trying to find a solution.Then you feel the body this is important,its taken 6 weeks to feel the sensations but really really peaceful, blissful now and tiny pulses in my legs. I can feel it working on my heart so I think that’s why my depression has lifted. My heart is not down now. That is truly remarkable to me! This means I can think way clearer and so function again. The brain truly shuts down in depression. Others report several months (some 6 even?)and then healing so Im just keeping going, some people recover instantly some soon afterwards.

    Your mind is so marvelous! Your heart so open! You are such a gifted darling one.

    I love you Anna. My beautiful English cousin recently died after only 6 weeks from cancer diagnosis until her death. Really sad for us here.I wish I was able to turn things around for you so much!Heaps of love xxxxxxxxxxRuth
    Love to Janet!

  • http://www.pranabchatterjee.co.nr Pranab Chatterjee

    Anna,

    Its good to see that you are back and blogging. I really appreciate the manner in which you have downplayed the considerable physical pain and discomfort that you have experienced over the month. Indeed, the blog is, in many ways an inspiring note, just a reminder that even when the chips are down, a little humor goes a long way to turn the tide.

    I hope and pray that you keep well and these nightmares do not recur. Idiosyncratic as they are, and unforeseeable, as has been in your case, I really hope you do not have to go through this again.

    Best wishes….

  • Aisha

    Dearest Anna
    Although deeply saddened by the content of this blog, I was so very pleased to “hear” from you.

    You are without a doubt the most truly remarkable person I have ever had the honour of knowing.

    You are in my thoughts and prayers so often (you cannot escape by returning to Sunny Oz!)

    I wish you and your family a wonderful Christmas

  • Alan

    Dear Anna,

    So (!) glad to see you back on the blog (important ‘l’, that). I’ve been feeling sorry for myself recently as I’ve had a nasty cold followed by a horrible throat infection that lingered for aaaages, followed almost immediately by another feverish cold. However, reading your tribulations does rather put my moping in context!

    As ever your insights into your health care are honest and insightful, and should be required reading for all. In particular the responsibility of the patient to speak out about their concerns over their treatment. Difficult to do in reality though because a) you’re sick, and b) it means challenging authority… if you (Anna) feels meek about it then imagine how us mere (non-MD) mortals feel – one doesn’t want to upset the hand that feeds (or cares). It really does require that the health professional is not only open to dialogue but also willing to initiate it, as else the (ill, weak, intimidated, scared, desperate) patient will often never raise the matter. (I’m not sure I would have the courage to do so, even though I’d want to.)

    Anyway, I do wish you an excellent down-under Christmas – pain and adverse event free. I do love reading your blog posts, even though I don’t always comment (tut tut me – no excuse). Give my love to Janet (tell her I’m enjoying the high quality Australian socks as we speak) and Michael.

    All the best,

  • Belinda

    Yoiks. I swear I shall never complain about anything again. I wonder why there are no RNs in Oz. Because of the wonky American Health Care system I use them instead of doctors now. Much better with advice, I think because they’re not afraid of getting sued. I guess if I had what you had tho, I’d need the MD. May the Sydney sun and the smell of the jasmine and wisteria and the color of the harbour and the hope in all the Chrissie Carols make you feel better babe.
    B.

  • Penny

    As no-one has commented on the television rental lady aside I feel compelled to speak up! Perfect comic timing. I laughed out loud to the bemusement (I’m sure) of my new colleagues in this oh so quiet and open plan office.

    Anna, I have been following your blog but haven’t posted before. Being without a medical degree or any personal experience of cancer myself I have thought it better to remain silent up until now. Who would have thought that it would take a radio rentals type anecdote to spur me into action?!

    Sadly, I do know a little bit about the long and winding road that is cancer diagnosis and treatment having lost my beautiful Mum to melanoma last year. An ex nurse, I think she found it difficult to believe in the prospect of recovery given the seemingly insurmountable statistics that she found herself up against. I’m so glad that you have the courage to look beyond the statistics. Belief is all in this battle.

    Thank you for your wisdom, humour and insight. I only wish Mum was around to read your blog, I feel sure that you could have inspired her to believe in the possibilities that lie within us all.

    Wishing you a wonderful Christmas with your family and friends.

    P.S. I hope that there is a book deal in the pipeline – this kind of writing deserves to be shared :>)

  • Dr.Viveck Atheya

    DEAR ANNA,

    MERRY THIS CHRITSMAS AND MANY MORE TO COME.
    May HE/They bless you-
    you are becoming useful day by day!!!!

    Vveck Atheya

  • Dr Anthony Papagiannis

    Amen to the last suggestion! It would be a definite addition to the support literature for people with cancer or those caring for such patients. Please let us know if it happens!

  • Neelima

    So nice to read your blog.prayers for healing ..on your way.

  • ghislaine young

    Anna
    Am SO pleased you are finally home again! In spite of the horror of all that you have had to put up with, the real you is still shining brightly, challenging us to think in new ways about so many things, and to grasp every possible joy from this life.
    Re the nursing/medicine issue: why don’t we admit nurses need doctors, doctors need nurses and most of all patients need us to work together in active, mutually respectful partnership. Have often thought that a hospital’s reputation should not be based just on the skill or talent of the medical staff but on the quality of the nursing care offered. As you say Anna the nurses are there to relieve the burden of the illness and to care for us at our most vulnerable. The doctors, of necessity, flit in and out of the ward, and though they have enormous influence on the outcome of our illness, it is the nurses who have the power to really make the difference betwen a good experience or a poor one. I have to declare an interest: am a UK trained ANP.
    Thoughts, prayers and love to you.
    Ghislaine

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