Anna Donald: Life in the shadow

Dear Reader,

Anna DonaldI should introduce myself before launching into a blog which I hope is not too depressing: living in the shadow of death. This is my starting point, as I was diagnosed with metastatic breast cancer (I lit up “like a Christmas tree” on the scans) in February 2007. It was not a complete surprise – I’d had primary breast cancer – not terribly high risk – in 2003. But disappointing that so much treatment hadn’t cured it.

Since then, I’ve had more treatment and have returned with my husband to Sydney after 17 years in London, Boston and Oxford (I first came to Britain as a Rhodes Scholar). I am slowly adjusting to the art of living one day at a time. Not my usual style to put it mildly. My prognosis is dismal, but I’ve come across sufficient, well documented ‘miracle’ cures (including Ian Gawler, a vet and friend in Australia who recovered from advanced sarcoma minus a leg, and who now runs courses for people with cancer) to convince me that recovery is possible. The question is, is it possible in me? I feel like a 19th century scientist trying mushrooms and vapours on myself, to see if anything gives. At the same time I know the literature better than I’d like to, in the circumstances, and don’t want to live in denial of the fact that 99.999% of people in my situation die fairly quickly. So I’m learning to live in an uncomfortable, ambivalent space of knowing-not-knowing which is fascinating, humbling and maddening.

In my previous life, having completed my houseman year, I helped to develop evidology (evidence-based medicine) from its early days in Oxford. With degrees in medicine, history and economics, I was interested in health policy reform. I returned from a stint in the US to work as a public health and policy lecturer at UCL; was one of the first Clinical Editors of the BMJ’s Clinical Evidence, and then, for the next 8 years, was chief executive of Bazian, a company I founded with Dr Vivek Muthu to provide high quality scientific evidence to health systems (mainly the NHS) and to publishers.

That life ended last year. So I’ve needed something else to do apart from read all the books I never had time for. On a recent trip to Sydney, the former editor of the BMJ, Richard Smith, encouraged me to write a blog documenting what it’s like to face life-threatening illness as a doctor who has been so involved with the EB world, among other things. Last year, I wrote one of the Opinion columns for the Health Services Journal, which I enjoyed, so I thought I’d follow Richard’s advice and give writing another go. Also, it’s probably the only thing I can do, come hell or high water (recently I was scribing away in the High Dependency Unit following brain surgery for a particularly accessible brain metastasis, although the writing kept veering off at a slant, which happily resolved the next day).

I hope to write about things that may interest doctors, other health workers and policy makers about what it’s like to have life threatening disease; to be on the other side of the doctor-patient divide, and to experience 21st century health care for a chronic disease (Sydney’s hospitals are pretty similar to Britain’s), from a quality-of-care perspective.

If you are moved to reply to this blog, please know that I appreciate feedback and am limited, given ongoing and unpredictable treatments, in being able to reply promptly, if at all. Please forgive me if I am not as reliable as I would like to be in correspondence.

I hope you enjoy the blog.

  • Tom

    Looking forward to reading this Annie. Putting it in my daily bookmarks now. Much, much love, and thinking of you always, Tom.

  • Alastair

    Excellent that you have found the time and inspiration to write. I’m looking forward to reading your thoughts from Down Under.

  • Richard Smith

    I’m very pleased, Anna, that you’ve begun this blog. I’ve learnt a huge amount from you through our conversations, and now others can learn as well. We all, of course, live in the shadow, but most of us deal with that predicament by ignoring it–in contrast to the advice of one of my heroes Montaigne who tells us to think about it all the time.

    Your image of being like a 19th century scientist trying mushrooms and vapours on yourself is arresting, and you tell us that it’s “fascinating, humbling and maddening” to live in the “uncomfortable, ambivalent space of knowing-not-knowing” whether you might die soon. Can you dig deeper and tell us how it’s fascinating, humbling and maddening? This is knowledge that we cannot learn from the cleverest professors unless they have lived in that space–and most, of course, haven’t.

  • Nancy K WIlliams

    Dear Anna,
    Richard Smith was so kind to send me your blog as you are often in my thoughts. You continue to be an inspiration to me. I am back working in the US (miss the UK very much!) on improved ways to identify and engage with individuals with advance illness, helping them to understand their disease trajectory/prognosis and options for interventions. Most importantly, working with clinicians in improving how we engage with patients in order to honor and respect how unique cultural background, beliefs and attitudes drive their goals of care. I am humbled by what I continue to learn everyday. So often I think of you and would love your insight. I hope we can schedule a “tea time” and take that opportunity soon. Take care, Nancy Williams

  • Faith McLellan

    Anna, I’m so sorry to learn of the occasion for this blog, but so glad to be able to read your story. I’d like to know if your experience has changed your thinking about the role of evidence–or not. Keep writing!

  • Viv

    It’s wonderful that you’ve decided to share your feelings, experiences and insights, which I know will give us much to reflect upon. Thank you – I look forward to learning a lot from you (what’s new?!). My thoughts and love. Viv.

  • Cat Sparks

    Hi Anna, Better watch out — blogging can be addictive! Looking forward to catching up again next week.

    CXX

  • Diana

    What a great way for all of us-friends, colleagues and health professionals- to travel with you: as always, Anna, you are a leader and an inspiration.

  • Tom Gaziano

    Anna, I was updated on both your brilliant career and your challenges with breast cancer from Geoff and Mel while in Sydney in February. However, learning more from your own “voice” is strikingly more moving and powerful. Surprising, how our worlds collide. Although we have not communicated in nearly 16 years since leaving Oxford, I hope you can accept my most sincere gratitude for sharing your thoughts with us on this most humbling experience. Our prayers and thoughts are with you. Tom Gaziano

  • Urmila

    Hi Anna, Thank you for sharing your feelings and experience with us. You are, and will always be, an inspiration to me. I am fascinated with the way you are coping and, have no doubt, that you will be amongst the 0.001% who are blessed with the miracle. My thoughts and prayers are with you, always. I look forward to reading further blogs. With much love. Urmila

  • justin

    Anna

    As always a really interesting point of view, and makes all your friends feel very closeto you.You are one heck of a person!I plan to be a regular reader and learner. Best wishes and fingers crossed-Justin

  • Elizabeth Santillanez

    Dear Anna,

    Richard Smith sent your blog link to our Ovations international Chronic Disease consortium. Thank you so much for sharing your insights during this pivital time in the progression of your life and experience with chronic illness. There is a tremendous amount that we can learn from you as you write to us about your experience and insights. We all have challenges which can bring us to a brink (physically, emotionally, spiritually), and it is encouraging and healing to share thoughts and experiences. This can help us to gain empathy and become better health advocates, personally (for others and for ourselves) and professionally. Thank you, and with best wishes, Elizabeth Santillanez

  • Caroline Richmond

    Ouch! I admire your calm. I wish I could help.

    In 2003, when I was 62, my low-grade lymphoma spun off a high grade lymphoma, I had high-dose chemotherapy and stem cell rescue. Everything that could go wrong, did. My chances of survival were somewhere between 1 and 4%, and here I am, age 67, writing obituaries for the BMJ.

    I did a recent obit – for the Independent – of Judah Folkman, who postulated angiogenesis and isolated and characterised angiogens, and angiogen inhibitors. There is a biog of him, called Dr Folkman’s war, by Robert Cooke. After reading it I feel I understand why extraordinary cures occasionally happen.

  • Hilary T

    Hello Anna,

    Lovely to hear from you.

    The world needs more brave people like you who are prepared to speak out about your situation. Values and culture in modern life are too sanitised and people are wary about being honest, or making others reflect. I have a number of truly memorable patients who, like you, fought against to odds so please bear them in mind. At the end of the day the only thing you can influence is yourself and your positivity will undoubtedly have an effect.

    Much love
    Hilary

    Keep up the good work

  • Sally Murray

    Thanks for sharing your world. A Math’s professor reminded me years ago that it doesn’t matter how often you roll a die and get heads, the next roll has a 50:50 chance of heads or tails. If I can apply the same kind of logic to your ‘evidence’: you never know if you are in the 99.999% or 0.001% . . . The good thing with disheartening evidence? It doesn’t apply when you roll the die for the individual. Hoping that the God of Maths doesn’t strike me down for an appalling/appealing lapse of logic, that the dice rolls your way and that your week is a happy one. Sally

  • Dear Anna

    I am also a doctor. I once had a lifethreatening disease myself- after the medicine stopped working, I found peace when I sought and found Spiritual healing- eg I went to the God who made the universe and has all the answers- I was healed after a committed Christian prayed for me, and ever since this was 14 years ago, I’ve been well.I believe and have experienced through Christ’s wounds people can be healed if not physically then spiritualy. It was also reassuring in that time to realise that there certainly is ‘life after death’ as it states in the Bible. You are in my prayers and thoughts.Do take care!

  • Sophie Graber

    Dear Anna,
    I have always upheld that it is a most humbling experience for any healthcare professional to experience being on the other side of the desk/ operating table in short being a patient and then finding that we just do not have the patience for this kind of experience. I admire your courage to share your feelings and ordeals and the little joys every day holds. Hope you are getting better. Take care.

  • Dallas Knight

    Thankyou Anna for sharing your personal diary with us. Much insight will be gained because your ability to articulate so well is rare and special.
    That your friend and colleague Richard Smith (whose ideas and ideals I admire) encouraged you to share your thoughts is fortunate.
    Clearly you have valuable and strong support from your many friends and admirers.
    Good luck and best wishes.

  • meris

    Thanks for sharing your world. It’s very important and unique to read about your feeling , it’s a great way for all – friends,health professionals,citizen,women with cancer – to travel, better to “stay in touch” with you. Keep up the good work. Much Love from Italy. Meris

  • Andrew Carmichael

    Dear Anna, I write as a person ‘cured’ with heavy chemo and stem cell autograft 14 years ago so the hairstyle is no surprise to me. I enquire if you are aware of the work done in using dehydroascorbate as an anti-cancer substance. It combines with a substance only found in cancer cells (homocysteine thiolactone) to produce apoptosis of the cancer cell only without harm to normal tissue. You may wish to try this by taking a daily supplement of palmitoyl ascorbate, a common food additive and anti-oxidant which causes the cell concentrations of dehydroascorbate to be increased as that is the form in which ascorbate is absorbed into cells. It is experimental inasmuch as the original work was done in 1982 by Poydock but ignored for years. The reference is
    Dehydroascorbic acid as an anti-cancer agent
    John I. Toohey
    Cancer Letters Vol 263, Issue 2, 18 May 2008, pages 164-169
    doi.10.1016/jcanlet.2008.02.002
    Supplies of palmitoyl ascorbate are available from the USA where it is known as ascorbyl palmitate. I can supply small amounts free of charge as it is currently being used in a programme to improve Parkinsons symptoms. Suggested intake of this lipid soluble stuff is 5 X 200mg daily equivalent to 400mg of ascorbic acid BUT not water soluble and therefore better absorbed.

  • Slobodan Kazic, M.D.

    Dear Anna,
    there is a drug which might help you in this situation, and it is ammonium tetrathiomolybdate.As every malignancy needs new blood vessels for its spread, blocking angiogenesis blocks further dissemination of the tumor. Ammonium tetrathiomolybdate deprives body of the copper (which is needed for angiogenesis) and in that way may stop angiogenesis and further cancer growth.This is not the drug which kills tumor cells, but inhibits dissemination of the tumor, enabling patients to stay alive. This drug is still investigational, but excellent results were achieved so far in clinical trials, including cases of people with metastases who live for years while being treated with this drug. A bad side of the story is that it takes a couple months for this drug to act, although new formulation of the drug which acts faster is under study.
    I am an expert for Wilson’s disease, so I am familiar with this drug as drug for treatment of Wilson’s disease and not with utilisation of this drug for cancer treatment. However, if you are interested in this method of treatment, I can refer you to the the colleagues who are using this drug for patient’s treatment at this moment.

  • Slobodan Kazic, M.D.

    Dear Ann,
    I sent you my comment above, I hope that it will be of help for you.I wish you good luck in your struggle.

  • Andrew Carmichael

    Palmitoyl ascorbate also has the property of reducing the formation of new vessels. It might even be worth trying both??

  • Dear Anna
    Thank you for your honesty and for sharing your feelings. As a Mother and mature newly qualified Nurse, I have had met and cared for many people suffering with cancer. Recently I accompanied a lady patient to go for a CT scan to estimate the size of the tumour in her abdomen. Whilst we were waiting, I asked her if she had ever read ‘Louise L.Hay’ You can heal your life. She smiled and touched my face and she said she was a healer and had travelled around the world studying spiritual healing. She had gone to Louise Hays conventions and was a great believer in holistic health. During my University training, we were taught using evidence based medicine however, since working as a Nurse, I also believe spiritual health is equally as important as evidence based medicine. I wish you well in your future and send you love and best wishes. Anna.

  • Vito Patella , MD

    Dear Anna ,
    an Italian Oncologist in Bologna ( I ) , I have been wondering if mets in the scan means limited to bone , or to bone & elsewhere . I’d appreciate knowing that , for cure ratio goes differently .
    Let me know which treatment you are getting right now , and I’ll be glad being useful to a special person like you .
    God bless you ,
    Vito Patella

  • George Rubin

    Dear Anna,

    I am sorry to learn of your situation – it seems only yesterday during one of your visits to Sydney that I enjoyed your effervescent personality and enthusiasm for your new venture. I’ll look forward to reading and learning from your blog and meantime send my warmest best wishes to you.

  • kishore

    Hi Anna,

    Having continuous touch with patients of breast cancer, i can imagine what your feelings are. I happen to be associated with 2 close friends who are almost in your situation but with different cancers. Unfortunately one passed away with gastric cancer and other is living with renal cancer (metastatic). I am speaking with him regularly and my friend also is a doctor who is trying everything (alternative medicine). I think when we are patients, there is nothing which prevents us to become and behave like ordinary patients – in relation to hope, belief that other treatments will work.

    In fact we do not know the cancer completely (probably know just the basics, in spite of our EB approach and all that stuff). When we do not know – i think trying different methods of treatment should be encouraged.

    I know i am not as expressive as you are – But my sincere best wishes for you and I hope you will receive that miracle cure. The world needs active people like you.

    I believe There is a Siddha doctor (a traditional indian medical practice like ayurveda) who uses heavy metals for advanced cancers with good results. I will try to find out the address or information about this doctor and pass on the information if you want.

  • Ann Ryder

    Dear Anna,
    thank you for your blog, the very first blog I have read. I am a practice nurse and hope as I write this that I am still in the ‘remission phase’ of breast cancer, I have a new development which needs to be investigated next week so fingers crossed. I have worked in primary care since my diagnosis and surgery in 2004 and find I can be of great help to those who are newly diagnosed. I think simply being alive and still working and visible offers them so much hope. I wonder Anna if you have been tempted to try any of the treatments suggested by some of those replying to your blog?
    kindest regards
    Ann

  • wigs bateman

    Dear Anna,
    I stumbled across your blog and just wanted to wish you all the very best. I’m so sorry to hear of your cancer returning. Your blog is really special and as ever inspiring.
    I found your blog because I have a bit of time on my hands in a waiting place of my own – i crossed the world in the other direction, from Sydney back to the UK, in the last few weeks to also live in that “shadow of death” – although it is not mine but my mothers (rapidly progressing glioma). So although it is quite different, your description of the “uncomfortable, ambivalent space of knowing-not-knowing” strikes a real chord with me in these waiting days in the UK.
    Keep up the blog – it is brave and important and really inspiring.
    Good luck with everything – heres hoping for the 0.001% – i totally believe it can be.
    much love
    Wigs

  • elizabeth grosch

    How brave you are. it is no joke being a patient, but it seems worse when you are a health care professional, and know too much. I have had 4 orthopaedic operations and one breast operation since retirement and never though i would spend so much time on the other side.

    good luck, i hope you are well looked after

  • Dr.Viveck Atheya

    Dear Anna,
    you are amazing. your inherent goodness has not abandoned you. I feel that all what we learn ,practice and teach in modern medicine is good for our own selves(the doctors)!we do make an effort and it appears to work but simultaneously something else is also working, which is not seen by us; and which is equally powerful.EBM is our part of story. A chance should be given to that other aspect of the process of healing and getting well, which is working for the patient(and of which process we happen to be a part, only) and which is coming from a universe of which not many of us have any idea because it is there even if we dont perceive it thru our sense organs. In short, BELIEVE in phenomenon beyond the scope our “evidences” and DREAM of things which do not exist at that point of time but which can materialize, just because you dared to dream. Let the powers that move the universe be with you and make your dreams come true.
    Love
    Viveck Atheya

  • Sophia

    Dear Anna,
    Your blog is a sharp reminder of my own position. I am a paediatrician who was diagnosed and treated with primary breast cancer in 2004, 6 weeks after the birth of my 2nd child. I had a mastectomy, chemotherapy and radiotherpay and so far all is well. In the interim howver, I have lost 2 aunts to breast cancer and my father to prostate cancer. I can understand how you must feel. My fear is not for my self but for those I would leave behind and all I would miss out on ( my kids are 4 and 6). Keep strong, you will be in my prayers and thoughts. Remember, a 1 in a million chance means someone is that 1.

  • Jo Lee

    Hi Anna,
    I am also a doctor(GP) who had primary breast cancer in 2004 at age of 43 and only too aware of your situation.
    It sounds like you are reading widely, and I’m wondering whether you’ve read Jane Plant’s book ‘Your life in your hands’. Personally i find the dairy connection quite interesting and am now dairy free. Also have you been to the Penny Brohn Centre in Bristol (Bristol Cancer Centre that was)? I found their complimentary approach excellent. It’s a lovely place to stay for one of their weekend courses. They advocate a mainly vegan diet.
    Good healing to you,
    Jo

  • Hi Anna. You’re a great woman I’ve ever known. Keep up your spirit. You give me inspiration to struggle in our life whatever our condition. I pray for your health, for your better quality of life. I’ll learn from your experience because now I’m a medical student in Indonesia and I’m interested in palliative care. Thank you. Hope you’ll always smile like your picture that I see.Bye.

  • Dear Anna – it is good to see your blog (though I am obviously really sorry to know the circumstances). I was in Sydney in November on a visiting fellowship – talking to some lovely people about setting up DIPEx in Australia (which looks like it might happen)and wish I’d known you were there – it would have been lovely to see you (we really should have got to know eachother better when you were in the UK) I have fond memories of meeting you with Muir all those years ago when DIPEx was just an idea and you just got it straight away (not everyone did, I hardly need say). You’ve inspired lots of people over the years and its fantastic that you are continuing to do so – take care Sue x

  • You never stop, do you Anna!! I remember feeling exhausted witnessing your energy and enthusiasm when I first met you ages ago; and here you are facing a .001 chance of survival and you’re still making me feel inadequate!

    Don’t imagine that my expectations of you have become any less than they have been ever since we first met! Shamelessly, I want to continue taking advantage of you. Here is my question.

    Richard Smith has already invited you to help your fans understand how it’s “fascinating, humbling and maddening” to live in the “uncomfortable, ambivalent space of knowing-not-knowing” whether you might die soon. Since his response to your initial blog, you’ve received quite a number of different treatment suggestions from concerned admirers. As one of the founders of the modern evidence-based medicine movement, how are you reacting to and coping with these suggestions? I can imagine that I’m not the only person who knows that your reflections will be of great interest if you feel able to share them with us.

    Meanwhile, I reiterate (‘sotto voce’) the rude thing I said about your cancer when we arrived at your home on the wrong day and enjoyed a great meal rustled up at 3 minutes notice by the amazing Michael.

    Strength to you both.

    Aye, Iain

  • I feel like you can beat the illness with positive thinking body hass inner mechanisms to heal itself.stay in touch

  • Prasadika

    Dear Anna
    I am a buddhist and I am not surprised that you have gone tgru vipassana path to get some relief.I lost my sister to Ca Colon in 1998 in the UK.But please have strength and positive attitude.this will make life a bit more easier I am sure.take care and all the best.

  • Foteini

    Dear Anna,
    Thank you for your blog. I am a GP from Greece and I have already many times faced the disease as a doctor, as a granddaughter , as a niece as a friend. I have always been wandering what I would like to be given from the others if I was the one suffering…the answer is difficult.
    I trust that living one day at a time it is the answer and it should have been our way of living anyway not only when we get sick.

    Good luck with your treatment,
    Best regards
    Foteini

  • Cecilia Pyper

    Hi Anna
    I am very sorry to hear about your illness. Your positive approach and willingness to share your experiences in such an open way, is very inspiring. I look forward to your next set of writings. Good luck with your treatments and therapies. Take care and stay in touch Cecilia

  • Caroline

    Dear Anna,

    Thank you for sharing your experiences. I am sorry to hear that you are ill. I have only heard you speak once, in Oxford, but I could see that your audience was captured with your inspirational words. I remember feeling proud to be working in such an environment. My best friend is suffering from a rare cancer and is going down the alternative therapy route. If you would like details about what has worked, do get in touch. She is currently beating the odds. One thing I have heard that can be effective with breast cancer is Essiac Tea (http://www.essiacinfo.org/). You and your family are in my thoughts and I wish you well. Take care. Caroline

  • Malcom Hooper

    Dear Anna- thank you for your brave and thoughtful blog in the face of your own adversity. I write as an advocate for the ME (myalgic encephalomyelitis) community and a retired Professor of Medicinal Chemistry who is concerned for evidence-based medicine to be practiced with regard to this illness which is perversely being presented by some medical authorities in both the UK and Australia as a mental and behavioural disorder which is commonly labelled CFS. It is classified by the WHO as a neurological disorder. You will get the flavour of the pain and suffering of those with ME from the moving and sad story of Sophia Mirza, http://www.sophiaandme.org.uk Her story involves bad medicine and disregard of the several thousand papers on the biology of this illness. An equally moving story is that of Alison Hunter in Sydney. Her mother Christine established a foundatin that tells this story and supports biomedical research into ME see, http://www.ahmf.org for the full story. Adults and children are dying from this illness unnecessarily because of the failure to engage with the biomedical information and treat them accordingly. Sick Gulf War One (1990-1) veterans and sufferers from multiple chemical sensitivity are being similarly treated. Your story, knowledge and your integrity in demanding evidence will make a difference to them that could be life saving- thank you – with prayers and good wishes- Malcolm

  • Dear Anna,

    You are reaching us here in the US with your courage, wit and the leadership lessons you are giving to us. Richard Smith introduced me to you via the blog, and I am in awe. As have so many people who are in contact with you through the blog, I have both personal and professional stories with desperate illness. I’ve had the moments of clinical wonder in the midst of the personal travails, but have never slowed down long enough to let the professional sides of my brian complete the analysis. Your journey is so important to us, the caring in the professions. Please find the energy to keep us in your life!
    Warmly,
    Maureen

  • Bill

    Dear Anna
    your many other admirers have expressed it so much better than we, but we join in their words of admiration and good wishes. Kindest regards, Bill Holmes and Justin Jewitt

  • Anna Donald

    Dear Anna,
    I too am Anna Donald and your blog was posted the day before my birthday this year. I too have battled cancer, so I am sending you my very best and hope that one day we can meet. At the moment I live in Western Australia, but I may be moving on next year.
    I have often looked at our/your name when I have googled and wondered about the ‘other’ Anna Donald.
    I shall leave this for now and hope to write again some day.
    Be well, Anna Donald, the planet deserves you,
    Anna

  • Jan Davies

    Dear Anna
    thank you for this blogsite – another great idea! I have been thinking of you and sending positive thoughts since I heard from Trish Greenahlgh last year that the cancer had returned with a vengeance. I am sad and sorry. You are a fantastic talented, energetic and inspiring business woman, communicator and story teller. Keep writing. Best wishes
    Jan

  • Sue Huckson

    Dear Anna,
    Jan and I have just been talking about a wonderful dinner we had in London with you some years ago and what I recall was your energy and enthusiasm. You continue to inspire through your writng and contribution to this blog with a wonderful sense of humour – a true gift.
    Sue

  • Anna Donald

    Dear Anna,
    no need to reply. Just thinking and wishing you the very best on your brave journey.
    Anna (Donald).