You don't need to be signed in to read BMJ Blogs, but you can register here to receive updates about other BMJ products and services via our site.

Anna Donald: What’s maddening about living with advanced cancer

20 Aug, 08 | by BMJ

Anna Donald It’s time to tackle Richard Smith’s third request for information about living with advanced cancer: what’s maddening about it?

Hmmm … where to start? There are so many maddening things about cancer.

Some are obvious: not being able to control your destiny in the illusory way you are used to. Not being able to work. Being too tired to see friends. Not having children. Not being able to adopt children because they’ve been through enough trauma, usually, without you dying on them.

Some things break your heart: not knowing whether you’ll be there with your husband as he progresses through life and grows old. Or with your parents to love and help them when they grow frail. Or with your nieces and nephews when they need somewhere to stay and someone to talk to who is not their parent. Or with your colleagues and country to help it avoid daft heath care decisions as its budgets grow more and more pressed with ageing populations and ever-higher priced health technologies.

Some things are maddening because they are persistent small reminders that you’re not like other people anymore: not being able to put necklaces on by yourself because your fingers are too inflamed by the chemo to fasten the clasp; taking twice the recommended time to complete bush walks; having to sit down in the mall to catch your breath along with all the 80-year-olds and their wheely trollies. Buying a wheely trolley because you’re too weak to carry shopping. Unexpectedly meeting fashionable friends while in possession of said wheely trolley and being unable to camouflage it; hide it; pass it off as the 90-year old’s next to me (she has her own); destroy it in spectacular explosive fashion (as they do lorries parked outside Downing Street); swiftly become invisible so at least the wheely trolley remains unconnected to your person.

Some are par for the course: the 1000th time I get asked: ‘Does cancer run in your family?’ NO NO NO. NO-ONE in my entire extended family, to my knowledge, has had breast cancer or any other cancer for that matter. My family is ridiculously long lived. Apparently my great grandmother was the oldest woman in England for a while. By getting a life-threatening disease at 42 I am charting new territory. Can someone please tell the public that very little breast cancer is familial?

And, the next common question in response to “I couldn’t have children because of the chemotherapy” comes “didn’t you freeze eggs?” As if this is the easiest thing to do in the world. Again NO: it’s not a good idea to freeze eggs when you have hormone sensitive breast cancer because of the surge of oestrogen you undertake which is nectar to cancer cells.

Some things are just bloody annoying: delaying or avoiding trips because they’ll be too long and tiring and I’ll collapse in a heap when we arrive and complain a lot; refusing interesting work because I know I don’t have the energy to follow through. Passing up fun, boozy dinners and the like because I can’t eat or drink anything that will be served and, with an unpredictable violent cough, can’t sing for my supper. Being afraid of going to the movies or theatre because I might have to sit out the production coughing by the popcorn machine or risk dirty looks from other members of the audience.

One very maddening thing is the vast sea of confused and contradictory information about alternative (and mainstream) therapies, diets, supplements and the like. The lack of the most elementary information (eg cases or case series) about effectiveness, harm, and acceptability of treatment of about 90% of alternative treatments is woeful. While I know it’s difficult getting funding for research, at least practitioners could keep logs of who they’ve treated and what happened. I don’t buy the victim position of some alternative practitioners who seem to spend more time projecting anger onto the medical profession than figuring out how they might provide basic documentation about what they’re doing, for the future benefit of all their clients. The murky mess of claims and promises to people with cancer, who are vulnerable and lack any way of knowing what’s what, is quite unacceptable. We need a new form of Clinical Evidence of alternative therapies that summarises whatever information might be available, clearly stating none if that is the case, and what the treatment entails.

Of course that doesn’t mean people shouldn’t try new things – I’m trying lots – but at least know what they’re getting themselves into. Otherwise people just swim about in the dark, trying this and that, as if they don’t already have enough darkness to cope with.

Some things, of course, are not maddening at all. Not having to go to boozy dinners when you’d rather be at home watching a DVD. Not having to wear high heels every day. Taking a break from the hamster wheel that most professionals seem to experience, myself included. Not sure I’ll ever get back on it. I don’t have enough hair to be a hamster.

Anna Donald, Blog 14

By submitting your comment you agree to adhere to these terms and conditions
  • http://www.bazian.com Urmila Bhatt

    Dearest Anna

    It is very upsetting to read this blog about your every day life. I vividly remember what a busy business life you were leading in London until this deadly monster came your way. Nonetheless, I am sure that with faith and a positive attitude, you will succeed. Keep up the hard work. God Bless. Much love, Urmila.

  • O M Obin

    Listening to relatives of many moving into 80’s and 90’s seem to have similar problems and wish they had the stamina and health of their 30’s and wonder how to cope and maintain their social life and indepencece.

  • Tom

    I love you Anna, and am thinking of you always.
    (Your brother.)
    T.

    P.S. Love this thought: “I don’t buy the victim position of some alternative practitioners who seem to spend more time projecting anger onto the medical profession than figuring out how they might provide basic documentation about what they’re doing, for the future benefit of all their clients.”

    Very well said.

  • justin

    Anna

    You write so positively about even the negatives that I cant help smiling . I can hear your voice in your writing which is a great gift.
    As we have enjoyed a few boozy dinners I feel concerned at being “bumped” for a DVD. But perhaps you have stumbled across a new rating system for boring events- which DVD do you feel is better than dinner with the GMC?

    Best wishes

    Justin J

  • Ajit Kashyap

    Dear Anna, Hats of to you! Please keep up the good work and good words. You have hit the nail on the head.Please live life one day at a time. I am a cancer survivor my self, who was told of a median survival of 10 months, 06 years 02 months ago! I am still alive, and kicking in the face of all those “experts”

  • Colleen

    Dear Anna,
    I just want you to know that I care. I thank you for the courage you demonstrate each and every time you have to face one of these difficult circumstances you have mentioned. It takes courage to admit one’s vulnerabilities. But in admitting them, we find a new level of freedom because we realize we are not alone in our struggle.
    I bless you today, Anna. May you find new grace today.
    With love,
    Colleen

  • Mai Luen

    Is there a platform for patients to log their own case study – a generic form to fill with what we consider vital information, may start the ball rolling…I know the patients I am seeing in psycho-oncology would find it helpful to have one place to go and look up the experiences of others (knowing that it was not product sponsored).

    Anyways, hope you don’t get into terrorizing others with the wheely trolley as per the norm in Shelford!!!

    Take care of yourself.

  • Steve Kerr

    Hi Anna,

    I read the article on you in Good Weekend. I felt compelled to offer you something that has helped me. It comes in the form of a book called “A Course in Miracles” – You may have heard of it. I was never one to foster my relationship with God and pray, however my own illness led me to this book and it has helped enourmously. I hope you read it. You can buy it cheaply on ebay. If you like I could buy you a copy and send it to you?

    All the best, Steve

  • http://annadonald Vivian Waddell

    Dear Anna, Is it possible for me to get in touch with Andrew Carmichael re palmitoyl ascorbate for Parkinson’s symptoms? I have a couple of friends with PKD and would like more info. Thanks, Vivian Waddell

  • http://www.emedilab.com dr eddie price

    Anna,

    There is a new form of clinical evidence available to measure pre & post alternative & mainstream treatments called the SF-36. I show in my book So you think medicine is modern? that it is based on complexity science which according to Prof Neil Johnson formerly prof of physics at Oxford is the science of all sciences.I would love to send you a copy. I think you would enjoy the issues raised.

    regards
    dr eddie price

  • julie Loncar

    Hi Anna,
    You are doing a really wonderful job with your writing. I am sure that you will make a monumental difference to the lives of many with the work you are doing.
    I am a clinical hypnotherapist ,and I also practice, E.F.T. and Reiki. so I was very Pleased that you spoke of them in your article in the Good Weekend.

    I have also found Brandon Bays “Journey” work to be very powerful. Are you familiar with her work?
    My very very best wishes to you. Julie Loncar.

  • dubravka

    Dear Anna
    thank you for your courage and great sense of humor!
    Best wishes

    Dubravka, Coffs Harbour

  • Lewis Elton

    Dearest Anna

    Trish has just told me about your blog and I will visit it now regularly. You are as wonderful as you have always been.

    Much love

    Lewis

  • http://anniesuttor@live.com.au Annie Suttor

    Darling Anna,

    I found a photo of you in a paper hat at one of the Christmas Union parties looking as tickled with life as I always think of you. Needless to say I have it displayed and you are always in my prayers now. Look at all the loving, practical and unifying correspondence you’re generating, you legend.

    I’m sure I don’t have to tell you of the sustaining – I believe healing – value of music and I wonder what’s doing it for you at the moment. I somehow associate you with The Goldberg Variations. I hope the baby elephant is leaving you alone. However keep letting it all out, we’re all here loving you and supporting you as best we can.

    Annie S. xxxx

  • John Corish

    Anna,

    Your courage is immense. I see, however, that Richard Smith has asked you to write about “living with advanced cancer”. Is “advanced” a euphemism for “terminal”? If so, good. I’ve always thought it dreadful to describe anyone’s condition as “terminal”. And while I’m not a great believer in miracles, who knows what new treatments are around the next corner?

    Best wishes,

    John Corish

  • Lynsey Ferrari

    Dear Anna,

    My daughter sent me the article about you from GW because of my interest in EFT. Now I have read your BMJ blogs. They are wonderful – frank, funny and wise!

    Thank you for describing your experiences with cancer and treatment so generously and vividly. Your blogs will surely help all your readers in increasing our awareness and understanding of the hurdles faced by cancer patients.

    Heartfelt gratitude and blessings,

    Lynsey

  • Bill Krieger

    Dear Anna – Anna, thank you for sharing your story. Your story is somehow uplifting, and I appreciate it. It does make my recent trip to the doctor seem much more simple. Here’s the simple story that I hope will somehow be uplifting for you also.

    The urology specialist kept us waiting in a tiny room for two hours. The man is an outstanding urologist and that’s why we hired him. As a recovering teacher however, I couldn’t help but observe that the good doctor had apparently slipped through medical school having skipped or slept through every single class on sensitivity and communication. Beginning with no mention of our long wait, he launched into the pathology report, telling us that the bladder had fooled him. You should know this is the same guy who toured the inside of my bladder with a little camera he had inserted through a bodily tube not designed for cameras. He pointed at a black and white TV screen and talked about the red spots he could see in my bladder.

    There is indeed cancer, and it’s been more aggressive than he had thought. The good news is he still of the opinion that we can completely get rid of it through surgery. The bad news is that he doesn’t do that kind of surgery, but needs to refer us to yet another surgeon. The reason he’s deferring to this guy is that he specializes in removing bladders and their prostate friends as a form of cancer treatment.

    He would remove the bladder. Now that’s a different twist than we had prepared for, so the urologist told us about bladder removal. He used communication skills he probably imagined they covered in the sensitivity classes that he skipped in medical school.

    Take the bladder and prostate out? He told us the other surgeon can either make me a new bladder out of spare parts or he can just install a tube made from spare parts. I’m not familiar enough with things under my skin to imagine what a surgeon might consider a ‘spare part’, so now you know as much as we do. Do you have any questions? We just stared at him, which he took to mean he had explained everything quite well. So he stood up and shook hands all around, smiled and was half way down the hall before we cleared the door frame.

    And now the great news: The potential benefits of this surgery are wonderful. First and foremost, the cancer will be gone. And, just as big in my world, I will enter a special category of men who don’t ever worry about prostate cancer! No more PSA blood tests and no more doctors coming at me from behind, wearing one rubber glove with wiggling fingers and telling me to put my elbows on the table. That benefit alone, as any man reading this will tell you, is worth the price of admission. I’m not sure, but I think it also means less time in the men’s room with a line up of younger, uninitiated men standing behind me, tapping their collective feet from impatience. It’s like discovering the fountain of youth! (That may be an indelicate choice of terms, but accurate all the same.)

    In all of this, I have neglected telling you of what my main concern was on the day we met with the urologist. It was the same morning I was to have the catheter removed. I was not concerned about lab reports and possible cancer. It was all about the catheter tube I had been enjoying over the weekend. I had dreaded the pulling out of the catheter. The ‘puller’, a medical assistant, turned out to be a friend of my son. The two had once worked together as EMT’s.

    The whole scene reminded me a little of a skeet shoot where a clay pigeon is thrown up in the air so armed amateurs can shoot it. What’s the similarity? Picture the skeet shoot: Some guy gets a good grip on his gun, looks skyward and hollers, “Pull!!” If no image comes to your mind, that’s your good fortune. One important thing I learned from this particular hospital visit: Leave your valuable jewelry home, right next to wherever you leave your pride. Pride has no place at a hospital where you can expect to find some friend of one of your kids in charge of the skeet machine.

    Bill

  • Richard Smith

    Dear Anna,

    You’ve answered my questions brilliantly and completely. Now I have another question for you: “What makes you feel good?”

    Lots of love

    Richard
    XXXXXXXXXXXXXX

  • Graeme Gooding

    Thank you Anna for your inspiring articles and the public sharing of your experiences. Many of these (and of those responding) have a familiar ring to them and that makes me feel more ‘normal’. I am encouraged to share some of these.

    Last November my right side leg and arm totally failed due to a ‘short circuit’ later found to be caused by a golf ball sized Grade 3 astrocytoma tumor found in the left frontal lobe of my brain. It then started acting like the more aggressive Grade 4 type with new cancers quickly developing.

    Pressing my doctors for a view of my future prospects (I’m 54 years old) they gave me some very wise advice to ‘expect the unexpected’ as everyone responds differently and that regardless of life expectancy I should maximize the use of my time and think about what I can do now rather than worrying about future scenarios.

    Treatment started with steroids (to shrink the tumor) followed by daily radiotherapy and chemo tablets.

    The brain is amazing – after a few weeks the steroids shrunk the tumor and my right side returned to almost full strength – on a walking frame one week and walking freely and unassisted the next. Steroids were reduced and a few weeks later the right side failed again after a seizure – it was like holding onto an electric fence for two minutes! Steroid dose was increased back up again.

    Once I got over the ‘why me’ shock – I had to lie on the floor when I was shown the MRI – I have found the trip since diagnosis largely a very positive, enjoyable and/or fascinating experience. It has included getting closer to family and friends with emotions significantly heightened. It has been great to slow down and observe things in life I was missing before. I’m enjoying my more ‘balanced’ life.

    I’ve found writing about it very therapeutic and I send out regular email updates to work colleagues, friends and family. They all want to help but don’t know how so I’m no longer shy about asking. The daily radiotherapy sessions were a great chance for a roster to taxi me and use the time for a catch up chat.

    I also found taking up meditation an essential part of the treatment, especially when the high doses of steroids restricted sleep to 2 – 3 hours a night. Meditation helped me calm the mind of worries and it has become a very positive healing focus to combine with the other treatments.

    I’m now to be rested from treatment as, despite the initial scary developments, the secondary tumors have gone for the moment and the primary one has shrunk by two-thirds. The doctors suggested I probably had the tumor for 3 years or so in a more benign form – probably stress induced – and that it had recently kicked into a more virulent form. Perhaps if I’d taken up meditation sooner this may never have developed.

    I miss being able to drive, but I get by with my invalid scooter and can now readily walk to the train station. Work is now part time and restricted to what I consider meaningful projects, both paid and pro bono. And I’m enjoying those dinner parties and red wine again.

    Good luck Anna and I look forward to reading more.

    Graeme Gooding
    Melbourne

  • Anna Donald

    Quick reply to John Corish’s question about whether ‘advanced’ means ‘terminal.’ Oncologists like to say that terminals are where trains stop. It doesn’t apply to cancer, which is too unpredictable to label. So many people with Stage 4 cancer survive for 10 years or more and a few heal comletely. You don’t have terminal cancer til you’re being read the last rites, and even then, it’s not always accurate (enough people recover from that position).

    Another word to use is life-threatening. Which is accurate, whatever the outcome. But terminals are for trains. :) Anna

  • Diana M

    Another wonderful blog!

  • John Corish

    Anna,

    Regrettably, terminals are also for humans: it’s just that we choose to call them graveyards and crematoria.

    My mother died in 2003 from Multiple Myeloma almost 2 years from the day it was diagnosed. Her haematologist was a young, bright, Harvard Medical School graduate: but he was also very compassionate. In all his conversations with her and our family he never once used the word “terminal”.

    He treated her condition aggressively and when conventional therapy failed even progressed to the somewhat experimental use of Thalidomide. When this failed, he as diplomatically as possible referred her on to the local palliative care team. My mother was no dope and knew at once that although she had not been told that her condition was terminal, once the palliative care people became involved her hope of “a cure” instantly died.

    I suppose the palliative care nurses meant well, but for some bizarre reason they seemed determined to have her admitted to a hospice. Such a prospect filled my mother with dread. All her life she had been a home-maker of the somewhat house-proud variety and had absolutely no wish to enter some strange institution and be surrounded by strangers when she could receive exactly the same care in her own beloved home surrounded by family, familiar things and all her memories.

    For the last two months of her life she was kept going with thrice weekly blood transfusions at the local district hospital. She realized that this was no way to live and a few days after Christmas 2002 she made the announcement: “I want no more transfusions”. We of course respected her wishes and she died about a week later, her last recorded haemoglobin being 4.

    This, in association with reading your blog, has set me thinking about palliative care services in general. Are they really needed? Could not a good family doctor in consultation with an oncologist and with the help of a well trained public health nurse, provide an exactly equivalent service?

    I’ve recently heard it mooted that Geriatrics may be done away with as a specialty. Perhaps similar consideration might be given to the “specialty” of Palliative Care Medicine.

    Best wishes,

    John

  • Graeme Gooding

    Regarding John Cornish and Anna’s discussion re terminals and palliative care I attending an Anti Cancer Council information day yesterday and the encologist that spoke said the thinking was not a ‘hand over’ at an abrupt time when you became ‘terminal’ and treatment was no longer going to work. Where the cancer eventually caused death, he viewed it as a continuum with the palliative care commencing at the beginning when first diagnosed. If you viewed it as a team of health professionals on a particular person’s case, at the beginning the palliative care role of that team was a small proportion of the work but that proportion would escalate over time.

    Someone may be able to comment if this has translated into a change in how the palliative care operates before admission to a hospice, or alterantives to that as John suggests.

  • Graeme Gooding

    correction to my earlier comment – It’s Cancer Council Victoria – not “Anti Cancer Council”

  • Balika

    Hey Anna,
    I like reading your blogs-I particularly love your sense of humour and frankness, and I’m humbled by your courage. Something about you has struck a chord. I hope you don’t think it impolite or intrusive but count me in as one of those who care about you. Chin up! Take good care. Let me know if I can help in any way.
    Love,
    Balika
    Bangalore
    PS- I loved your comment “Or with your colleagues and country to help it avoid daft heath care decisions as its budgets grow more and more pressed with ageing populations and ever-higher priced health technologies.” Daft is right! And true not just of England but of most countries including India.

  • albertjames

    “One very maddening thing is the vast sea of confused and contradictory information about alternative (and mainstream) therapies, diets, supplements and the like. The lack of the most elementary information (eg cases or case series) about effectiveness, harm, and acceptability of treatment of about 90% of alternative treatments is woeful. While I know it’s difficult getting funding for research, at least practitioners could keep logs of who they’ve treated and what happened.
    ————-
    albertjames
    Buzz Marketing

You can follow any responses to this entry through the RSS 2.0 feed.
BMJ blogs homepage

The BMJ

Helping doctors make better decisions. Visit site



Creative Comms logo

Latest from The BMJ

Latest from The BMJ

Latest from BMJ podcasts

Latest from BMJ podcasts

Blogs linking here

Blogs linking here