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Monday, October 8, 2012

How the battle is played

I remember reading on one blog how deeply someone resented the use of the expression: "John Smith lost his fight with cancer last night...."

   Their resentment was based on the idea that "lost" implied the victim* was weak or hadn't tried hard enough to confront the illness. The truth is that most do everything in their power to survive, yet still lose.

   I gave this some implicit backing in a blog post in May this year, when I mentally berated a person intending to comfort me when they said

     "If anyone can beat this, it's you."

   I said nothing at the time, but wrote on the blog (waspishly I now see):
It's well meant, and a huge compliment in one way, but some have no idea the way it makes me feel, if I am going downhill - which, bit by bit, I am, going by the objective evidence. It makes me feel that I've failed, and am continuing to do so. Are you expecting me to conquer this thing that no-one in the world has overcome before? Pardon me if I "fail". I'll do better next time if I can. I'll try harder, I promise.
   The fact is that when John Smith loses his battle with such a disease, there's nothing inherently wrong with saying so. 

   Many will remember the Australian Open Tennis final in January 2012. I certainly do. Rafael Nadal was playing Novak Djokovic.

   "I went to sleep before it finished," someone said on the phone later in that day, "Did Nadal win? I wanted him to."

   "No," I said, "he lost, but it was one of the greatest battles of all time. It went to five sets."

   Nadal lost that fight. I don't remember anyone saying he was a wimp. After a match that took nearly six hours, who would dare? He lost, but displayed fantastic courage right up to (and after) that last point.

   It's often the same with a person who dies of cancer. They’ve done all in their power to stay alive, but against an attacker which over time has so many advantages, they may well lose their fight. It's no criticism or disrespect to say so. Even the use of the word "fight" indicates otherwise.

   There does come a time when a person has the right to a peaceful death. An acceptance of its inevitability. They should not be denied their right to appreciate when they have reached that point. Nadal lost the battle, and walked off with great dignity. Let's not deny that right to the terminally ill.

Afterthought, Tuesday, 9 October 2012 [My late mother's birthday.]  10:20 AM: What I was also reaching out to was another thought: there is also no weakness in knowing the right time to yield (I use that word deliberately, but "accept" is also a fair description.) Chess players see no loss of face or dignity in resigning a game when they know several moves from the end that they have no avenue of escaping inevitable defeat. There is far more dignity in that than in playing it out to a conclusion that even Blind Freddie can see coming.

Analogise that.
*The word "victim" is another that many might baulk at, because these days it's regarded as a loaded word as well.  **sigh** Writing anything these days is like walking through a PC minefield. Maybe I shouldn't use "Blind Freddie" either? Well, guess what, Freddie may be incapacitated, but it doesn't mean I think he's stupid.


  1. Was discussing this very issue with a friend just today. While I don't have a terminal illness, I have collected quite a few chronic health problems for which I take A LOT of medication daily.

    The discussion was sparked by the Australian Mining ad in which the Olympic cyclist talks about her recovery from an accident which left her unable to walk. She says that she is too competitive to ever give up, the implication being that she was never going to accept that she would never walk again, & therefore that sheer force of will overcame her paralysis.

    Having been repeatedly told by (mostly) well-meaning folk that I could easily cure my conditions through varying disciplined regimes, this kind of statement instantly makes me bristle, & I'm on the defensive. Do people honestly think that in over a decade I haven't tried or sought medical opinions about alternative treatments in order to find one that might work for me? Do people think I am not trying hard enough? Sometimes I feel (& in fact I have been told by certain individuals at my workplace) that there is an assumption I have selected illness as a lifestyle choice, that I am choosing sickness over good health, that I could heal myself if I chose to. So when I see the mining ad I wonder: Does society view me as a weak, impaired individual who has given up on life or well-being because my health problems haven't gone away?

    As you have stated so eloquently, allow those who are "losers" the dignity of the battle which they have waged, just as nobly as those who have "won"

  2. In your own words, Denis: "I’m now dealing with a GBM (4): the most aggressive form of brain tumour. It should have got me months/years ago, but we’ve fought it and I’m still here!"

    I've been thinking about everything you have done outside of the medical treatments available to you. The "small" things that are within your power are probably those things that have enabled you to still be here. I'm thinking in particular about your attention to diet, rest, exercise, meaningful activities, stress management. You have not been a passive patient, accepting the doctor's bone-pointing, and you have fought back, as you say yourself.

    I know you've mentioned in passing what you have added to your medical regime, and I'd like you to think about a concentrated blog entry in which you discuss all these self-treatments for the benefit of the rest of us who may find ourselves or our loved ones in your position. To be able to point to a specific blog entry on alternative or self-help treatments, rather than try to navigate the minefield of what to say/what not to say, could be very useful.

    Those who care always want to find something positive to contribute and always run the risk of offending.

  3. Totally second Joan's request. If you are inclined then that would be another gift you are able to give.

    And as for the point of your post, and your addendum, I respect, accept and agree with your realism, but I hope it's not based upon some recent self-assessment of 'how things are going'?

    I know I sound very old fashioned, but winning or losing are never the point of any endeavour; more how you perform against your own goals; more how you feel about your own performance. I saw that tennis match too. Both players exceeded their own expectations. Both walked away rightly proud of that personal accomplishment. Swimming is another sport where we seem to discount the fact that most team members record PB's but come home with only (say) one gold.

    Never understood how anyone can be expected to do any more than their personal best.


  4. Thank you for your wonderful post. My husband has a malignant brain tumour and we too have got annoyed at times with people suggesting that we have to keep fighting.

    Brain Tumours take a huge toll on the patient (and their families) and only the patient knows how they are feeling at any given time. At times you want to fight and at other times you want to curl up and hide. Both of these reactions are ok.

    I have had discussions with my husband about the end and that ultimately however much I might want to keep him alive he has the final decision. Only he will know when he feels he wants to accept his death will be inevitable sooner rather than later.

  5. This comment is probably too self-centred, I’m sorry, but thinking of death is often very personal. As most of us do I have thought about this issue quite a lot. None of us can avoid death (unless it is true that some greater being will swoop down and give those of us who deserve it us a second life and in that case I have already blown it).

    Nearly forty years ago when my very new baby was ill, the Catholic nurses who attended him in hospital urged me to baptise him in case he died. I said I did not intend to do this but, seeing their distress, relented and said that, provided it did not interfere with his medical treatment, they could do whatever made them comfortable about that whilst they were looking after him. I do not know what they did. They cared for him very well during his short life and were very nice to me. I realized that, coming from different perspectives, the formalities and expectations of death are so very different both for those around the dying and others who are touched by it that they cannot be considered as the important factor. Death must be for the dying.

    I also have been faced on occasions both professionally and personally by suicide and attempted suicide and this also makes one think deeply about choices.

    Being older now and having had more experience of other people coping with their death, I have to say that each person's choices about how they cope are very different and must be accorded the same respect, whether they “battle” or “accept” either deliberately or through circumstances. Also people's choices will not remain consistent over time and experiences. And that is fair enough!

    My mother died of dementia. The carers in the nursing home assured me of the respect and dignity with which all their patients were accorded. My mother was addressed by her name and title "Mrs" which she, in previous days, would have preferred. But a bright young woman on the kitchen staff, originally from Africa and who had a lovely smile, would grin at my mother and call her by her name "Ethel" (which she always used to hate for obvious reasons) and be much more friendly than other staff. My mother beamed at her. I then asked them all to call her "Ethel" and she appeared to emotionally flourish. It proved to me we can change our minds in most unlikely circumstances.

    My late husband and his brother took very different paths as they died. I related more to my brother-in-law who wanted to know exactly what was happening physically and why. We laughed at him after one explanation was given to him about a peculiar physical phenomenon that had occurred. We all would have been worried if we had been he, but he was totally reassured by the explanation and said, "as long as this is normal". He enjoyed the subsequent joking that his death was going to be more acceptable to him the more "normal" it was. He agreed vigorously that he sought "normal", even in death.

    On the other hand, my husband, who was a very clever man, was totally in denial. He would sometimes speak in abstract terms about his death. Despite the palliative care doctor visiting him at home a few days before he died and explaining to him that death was very close and the GP giving me his mobile phone number expecting he might be needed during the weekend, my husband talked of improving and getting up soon. The spirit was willing but the flesh was weak! I was quite frustrated, particularly in terms of what I would like to have said. But this was not about me; this was his death so it was for him to cope in the way that he found easiest.

    I remember with love each of these people, their lives and their deaths. I respect the choices they made.

    I am sure everyone will respect choices you make and will always be grateful for what you have shared already, and what you are yet to share with us.

    Anne Powles

  6. I somehow missed out my most important paragraph which said - Death is not a tenis match or a game of chess or any performance for the living. It is a time when those who care, and who probably want all the time they can have with their loved ones, also want the very best and gentlest for them. And only those loved ones themselves can know what that best is. Anne

  7. A very acute analysis of the embedded values of our words Denis. That there is a certain piquancy about the subject, you, and how dying is lived, adds to the poignancy of the analysis. Thank you Denis.
    warmly with love

  8. It's wonderful to see so many comments that people have put thought and effort into and I thank you all. Normally I would respond individually but will probably write just one covering things that really matter to me, and you may take it that silence on others means I probably share your view.

    I won't attempt it tonight but did want to say one thing – don't take this posting as a sign that I am resigning, forfeiting, cashing in my chips.... and that it's somehow a direct warning about that. It's not.

    I had a sort of prequel to this written weeks ago based on several articles and I'll probably post it before long, but it can be a sequel now. In due course....

  9. I must say I wondered whether you were warning us.

    What I see you doing, and what I think I do (I have progressive MS) , is to live in the moment as well as is possible. The words "winning" and "losing" don't seem to come into it any more than they would for a totally healthy person. I feel quite relaxed about other people using those words as I suspect they are saying something more about how they feel about it.

    The next bit is hard and I have never verbalised this before. It concerns my reaction to the "bee sting brigade" - those that, often most respectfully, draw my attention to a new cure or analysis of my condition. Certainly some suggestions are whacky and merit no further thought but what I am trying to tie down is my reaction to ideas that might just possibly have substance. At that point the secret feeling that I have contains elements of "don't rock the boat". Of course I don't want to be ill but I realise that I have developed some investment in life being this way. This shocks me deeply.

  10. Everyone who knows and loves Dave (David Stratton - above) wants him to "keep fighting" and to stay alive. Even more - to be "cured". Everyone who is in your life, Denis, in a deeply personal way, or even those of us who read your blog, and have come to "know" you, feels this way about you, too. We all want you (and Dave) to keep going - because when you are no longer here, we are going to miss you (both), dreadfully, deeply and forever. It's going to be hard for us all to live our lives without you (plural) in it. We are in pain already to think about it, to imagine it, to try on the cloak of life without you both.

    So, sometimes, often, people give Dave and me suggestions of how he/we might best "beat" MS. Even yesterday, we had lunch with a friend who asked us what we thought about the TedX talk given by an American doctor who cured herself of end-stage MS by changing her diet to "feed her mitochondria". If we were to change the way we eat to follow this "cure" (i.e.eating the way humans did 10,000 years ago) it would need a huge change in the entire way we live. And here the carer-guilt begins to seep in. "You can do it Ros - you can do it for Dave," says the sneaky, shaming voice. To do this, I would need to spend most of the every day in the kitchen - not caring for Dave, not growing our vegetables, not tending my chooks, walking my dog nor loving the rest of our big family. In.The.Kitchen. Where, incidentally, I already spend huge amounts of time preparing nutritious, fresh-ingredients, tasty, yummy, healthy meals every day for Dave and me (and occasional friends and family).

    So, I (we?) have come to accept that when people tell us about the new bee-sting cures in India or Mexico (or wherever) for MS, or suggest diets, exercise regimes, bio-dynamic pills and potions of ground-up coral or whatever, whatever , what they are really saying is, "I love you, Dave. Please don't die.". And, "Ros, please fix Dave up because I really can't bear to think of life without him in it." They are not thinking about the thinking, researching, listening, reading, reading, reading, the discussing with professionals of all kinds, etc etc that we have been doing for 17 years now.

    My job is to not let the guilt-voice drown me with its shouting. My job is to keep doing the very, very best I can to keep Dave alive and happy and as healthy as possible under these dastardly circumstances. And to keep loving him with all my heart. Our job is also to keep working at living our lives, richly and fulsomely, inspite of MS being in the centre of it. And to forgive people when they clumsily express their grief-in-advance by putting another arrow in our already over-full quiver as we keep engaging in this "war against MS".

  11. Again, I must say these additional comments are as wonderful as the ones I had already seen, and more powerful than any I could have written. What I've written should only be taken as an introduction to them.

    I feel overwhelmed a little and however much I want to respond, the great thing about them is that they stand perfectly on their own without a word from me. But that's not in my nature so I will put my own point of view on some points when the time is right.

    You have all utterly bowled me over. Thank you so much.

    1. Your "own point of view" enriches us all, Denis. I'm glad and grateful that it is "not in you nature" to hold your thoughts close to your chest. I look forward to it.

  12. Choice is the word that springs to mind; personal, private, respected choice. Choice in how to live, how to continue living, how and when to slow down, how and when to die. Choice. Private choice.
    Before my mother died she told me she believe in voluntary euthanasia. She asked me 'would you help me'? I told her I would if I could. She died of emphysema, pneumonia whilst dealing with MS.
    Before my father died he contracted alzhiemers disease. Before he stopped talking he said; You know your mother and I believe in voluntary euthanasia. Would you help me because I don't ever want to lose my mind. I gave him the same answer I gave my mum, his wife.
    On both occasions there was no choice.

    My husband has chronic illnesses. He has been dealing with, ( don't like 'fighting') with the help of a miriade of specialists, a number of health problems. Three times now he has come very very close to death.
    Through the last 20+ years he has 'heard it all'. Diet, exercise, green lipped muscles, copper braclets, aresnic, injestion of minute amounts of gold, taking 'natural tablets made from a ground down mineral from Central Australia'...and even 'exorcism-he has the devil in him'.He has been offered water from Lourdes ( we are atheists) and prayers and blessings to 'cure' him.
    If he had taken any of these pieces of information seriously he would have died within a few years of his first diagnosis.
    He 'chose' not to turn away from medical science, modern pharmacology or latest specialists. In some instances he has 'paid' for that choice in that some of the helpful medicines saved his life but also caused another round of problems, but always traceable and with luck, treatable.(Thus far).
    When someone draws me aside and says; Have you tried acupuncture/naturotherapy/raw veges/no dairy etc it takes all my regard for myself and my husband to not say; "Are you prepared to take responsibility for the outcome if he takes your advice?"
    No matter their 'good intentions' there are many reasons why people want you to choose their advice over science. The most common one I find is one of superiority and control.

    So with choice we talked and talked and talked about our life together, what it has entailed and what it may look like as we head forwards. Our choice is; To choose as much as we can to live 'normally', with good food, laughter, hope and consideration for the intelligent mind and the stimulation of conversation, opinions, books and acceptance. And; To choose to continue to turn to science and medicine and take advice and to study, read and consider all that is offered.

    Thank you for your blog. It is stunningly real to me. It is close to me in a sense. Thank you for starting up new thoughts for consideration and new discussions to be had.

  13. Thanks so much again to all. After the events of the last 18 hours or so [see WHAT'S NEW!] I'll wait to respond to various points. Yes, I know I'm not expected to. I'll do it because I want to!


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