Anna Donald: Confessions of a chemo-veteran

I’ve spent the last week reading. I haven’t done much else, because my cough has reached the point where it’s slowing down my movements: constant coughing fits are tiring. On Friday night, I declined an invitation to a cocktail party and on Saturday, to a dinner party, for fear of coughing all over the guests and hosts and having to take cough drops with the vichyssoise. I’m having more scans today (I’ll soon be glowing in the dark) to see what’s going on. To see if it’s time for more chemotherapy.

I must emphasise as something of a chemo-veteran that chemotherapy is not the horror treatment it was even fifteen years ago. Anti-nausea drugs have completely transformed chemotherapy. They mean that while you still feel pretty unwell, you rarely face the kind of over-the-toilet wretchedness that gave chemotherapy such a bad name. I think the newer anti-emetics are close to being what anaesthesia is for the general population in their impact upon quality of life for people with cancer.

That said, I am not thrilled about the idea of more chemo. I’ve got lots of metaphors for it: a small elephant that sits on you, then trundles off, only to absent-mindedly turn around and sit on you again. As the days pass, the elephant becomes a donkey, and finally a small dog. Then you feel a bit better. Other times, chemo is like being immersed in loud white noise. You just have to wait until it’s over.

I had my first round of chemotherapy (epirubicin) five years ago. It was an alarming red and hit you like a train. Nothing’s ever made me as sick. I spent the first night in Accident and Emergency being rehydrated, having been given insufficient anti-nausea drugs to take home and no instruction about how to take them (for example, that you can just take another one if you need to).

Subsequently, I often found myself advising first-time fellow patients in the chemo suite to get better cover, when their doctor had only given them medium-grade anti-emetics (and to one poor lady on epirubicin, only paracetemol; I had a good mind to report her doctor).  I have no idea why so many oncologists seem to under-treat nausea in first-time chemo patients. Sadism? Incompetence? Probably a lack of understanding of what an enormous shock to the system your first chemo dose is, causing your body to buckle and heave, requiring heavy anti-nausea cover even if later cycles do not when your body knows what to expect. Combined, probably, with some degree of denial. It hurts to cause suffering. 

I found an alarming moralistic attitude among some oncologists that medium-grade or low-grade anti-emetics “should” cover the nausea – as if patients are somehow just being weak if they allow themselves to feel nausea and need to be taught how to handle themselves. So send them home with paracetemol to give them a bit of backbone (that particular example was, thankfully, an outlier).

Oh the joys of chemo. Well, I’m not there yet. I’ve got an appointment with my oncologist on Thursday, when the results of scans and blood tests should have arrived. Fingers crossed for no chemotherapy, but then again, I’d rather have chemotherapy than increasing debilitation and exhaustion from a cough that just won’t heal.

On the bright side, the bad weather that was supposed to show up in Sydney this weekend never materialised. We’ve had gloriously blue and sunny skies. Our flat looks out over the harbour which is especially glittery in the winter sunshine. Mango season is over, but there are plenty of amazing things to eat in this big blessed island. Can’t complain too much.

Again, my sincere thanks to people’s lovely comments and offers of assistance and resources. They are a huge support to me. I am very behind in my correspondence and apologise for my lack of reply to people whose comment begged one. I hope to remedy this over the coming weeks.

  • austin leach

    Dear Anna
    Thanks for your honest and forthright writing.
    I am a consultant in pain medicine and have dealings with oncologists from time to time. I, too, have noticed an occasional distancing of the doctor from the reality of symptoms, and a failure to acknowledge the impact unpleasant side effects can have. I don’t honestly think it’s a deliberate attempt to get chemo imbibers to pull themselves together. It may be that to be a career oncologist it becomes necessary to thicken the skin a little – getting ‘too real’ with their patients may be emotionally extremely demanding.
    This is in no way an apology for those attitudes – I find unsympathetic (or rather, unempathic) doctors an anathema – merely an observation.
    Symptom control is as, if not more, important than the treatment itself in terms of QoL impact.
    Austin Leach

  • Jeremy Wyatt

    Dear Anna, thanks again for these profound and generous new insights about your experience of illness. I’m wondering if you can perhaps bring all these together in some more accessible format than your blog, to help many more doctors improve their approach to the people they see and treat. A summary of your insights would also help balance the conventional flow of information from doctor to patient, inspiring and empowering our patients to continue your brave questioning and reporting back to us about the nature of disease and its effects on them. This seems so much more important than replying to our fleeting comments ! Good luck on Thursday… Jeremy

  • Isabella

    Anna, thank you so much for this blog. You write like an angel and face the hard stuff with clarity.
    Isabella

  • Mai Luen

    I have pondered whether as doctors we ought to have to try some of the treatments we prescribe or procedures/investigations we order…now, I am going to just take your word…fingers crossed for Thursday…take care and say hi to M & J.

  • Sam

    Dear Anna

    Good on you for raising the question about insufficient
    anti-emesis – and for your thoughts behind the reasons
    for this. Fascinating.

    Best of luck on Thursday -and hopefully may you avoid the elephants a little longer

    Sam

  • Tom C

    Dear Anna,
    You are in my thoughts often. I am enjoying reading your blogs – good luck this week, whatever that means. Hope to speak soon, love to you and M. Tom

  • Fraser Macfarlane

    Hi Anna

    Good luck for tomorrow. Trish and I are thinking of you (and Michael). You make us feel incredibly humble. Send our love to all in Sydney

    BW

    Fraser

  • Tom

    I agree with Mai Luen (hey Mai!) and thought similar when reading: Cancer doctors should do one round of chemo to experience it so they can truly empathise with their patients.

    Thinking of you all the time Anna, and hope (like Sam) that the elephants stay away as long as possible. But if they come, remember they like peanuts, and Ganesh is widely revered as the Remover of Obstacles.
    Much love, Tom.

  • Richard Smith

    Dear Anna,

    You’ve taught me more about chemotherapy in these few paragraphs than I ever learnt in my medical training–and the last proper medicine I did was a spell in oncology.

    I’m walking the Dalesway, which is “heavenly,” an entirely appropriate word. Everything is simultaneously ancient and reborn, the fields are full of blubells, lambs, and the freshest, greenest grass. But I had to snatch a moment in Sedbergh Library to catch up with your blogs.

    Lots of love

    Richard
    XXXXXXXXXXXXX

  • Diana

    Reading your blog makes me feel like I’m sitting in the living room with you, looking at the glorious view. Hope things went OK today.

  • Andrew Herxheimer

    Dear Anna,
    It took me a while to get to your blog – it’s wonderful, I can hear you saying it all. So much important truth from the heart & mind. I’d like it to reach everybody, & shall try to get DIPEx to link to it. Delighted to be in touch with you again!
    Love, Andrew

  • Rick Niederman

    Anna:

    I am just catching up with you after a too-long delay. Your blogs are simultaneously heart-breaking, uplifting, and funny – although I didn’t get the right hand / left hand humor on the previous blog.

    Your description of the epirubicin so reminds me of Asha’s first encounter – with the drug and the toilet bowl – it brought me to tears, again.

    In an odd twist Asha currently plays an electric violin with an Aussie rock and roll group in Los Angeles, Porcelain, who are all from Wollengong (did I spell that right?).

    I dearly miss seeing you, and hope the cough is a short-term setback.

    My very best wishes and love,

    Rick

  • Neelima

    I look forward to reading your blog.I must admit, there are certain words and phrases which I cannot understand.However it is coming from your heart which makes it such a beautiful reading.Keep writing.

  • Dear Anna

    You are always in my thoughts and prayers, Anna. I hope you continue writing your blogs, which have touched and inspired so many. You write beautifully and explicitly about your experience, which I hope will make a difference to cancer patients. I miss you and can’t wait to see you. With very best wishes and tons of love.

  • Alan Lovell

    Hey Anna,

    I loved your metaphors about chemo… it’s already been pointed out so many times but you really do have a wonderful turn of phrase (I’m sure you’ve already read some Wodehouse at some point in your life, but if not give him a go – you’ll appreciate him as one wordsmith to another). And you should get a book deal, as your writing is too good to be wasted on the blogsphere.

    As for Tom and Mai’s idea of Drs being obliged to under chemo – yes, quite, absolutely! Oh, and imagine what we could do to dentists!

  • David Anthony

    Dear Anna,

    A late comer to your blog, but you have been in our thoughts. Such clarity. Why would I expect less. I smile through tears imagining you exploring this frontier within yourself.

    Sending all our hope and love.

    David

  • Martin Ashdown

    Hi Anna,
    i’m a clinical cancer researcher collaborating with the Mayo, Royal Women’s Hospital Melbourne, Peter MacCallum Cancer Melbourne and others. We have discovered that in the late stage cancer patient, the patient’s immune system is persistently and repeatedly oscillating on and off against the tumor burden in a process of endogenous vaccination / autoregulation over an approximate 7 day cycle. The “off switch” autoregulation lymphocytes are synchronously clonally active over a narrow 12hr window every ~7 days…..within this narrow window these cells are exquisitley sensitive to being ablated by standard cytotoxic agents. Once these cells are killed off the unregulated immune system can dispatch the tumor burden relatively quickly. We know this from the mouse experiments. We have good evidence that when chemoRx is spectacularly succesful in a late stage patient, it is due to fortuitous ablation of these regulatory cells and not direct cytotoxicity against the cancer. Consequently the patient must be treated at the correct point in their idiosyncratic cycle for best therapeutic outcome – a complete response ……so its a bit like the menstrual cycle and fertilization/conception….as my wife says…..”if you want the baby, you got to get the timing right. Last year I was an invited speaker by the NCI/NIH Dept. of Surgery at the cancer immunotherapeutics conference in Banff, also by the TGA in Canberra and this year (May2008) by Ian Frazer to address his oncology collaborative group at Princess Alexandra re our clinical work at the Mayo Clinic and with Michael Quinn director of oncology at RWH here in Melbourne. I would like to discuss this with you….as I think you would understand it, as this cycle explains the heterogeneity of responses to chemoRx and why chemoRc doesn’t work most of the time.
    Prof Martin Tattersall is also aware of this work.
    best regards
    Martin

  • Hello, A question for Martin Ashdown. I am undergoing a chemo treatment 4 weekly called F & M. Mitozantron and Fludarabine. I live in New Zealand and our medical care is not great due to lack of funding and a brain drain of medical seeking the bigger pay packet. My question is the same as Anna’s. They can’t get the nausea under control. I have tried Metoclopramide (Maxalon),Ondansetron (Zofran),cyclizine, Domperidone (Motilium). all have proven completely useless. I vomit and remain nauseated for a further 10 days after treatment. Can you offer any suggestions. Anna You are amazing. Good Luck Girl