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Thursday, May 16, 2013

Please don't say this.

This is something that was said to me at the hospital recently. I may easily have said it myself to a person in my circumstances if I were trying to make them feel better, but being on the other end of it, I found it strangely hard to take. 

Maybe it's just me. Maybe others would appreciate it. I can speak only of my reaction, and if I felt this way, maybe others would too. Let me put it out there anyway.

   At the end of each three week cycle, there's a huge question hanging over whether or not I will be allowed Avastin on the day we rock up for my treatment. This is not a choice I get to make when the needle goes into the red, so to speak – when the test results come in and the amount of protein in the urine is deemed to be dangerously high. 

   It's not even something that's entirely in the hands of my oncologist. At a certain point, he must not authorise more, even if I wanted to have it and he thought it the best option. That is not within his control either.

   So what was said that I found unhelpful?

   "Look, never mind. After all, you've had at least two more years than you could have expected."

   It was said in a cheery way by someone who walked out the door shortly afterwards and would trot happily over to her car to do other things we normally expect in life.

   "Yes," I remember saying. "That's true."

"Always look on the bright side of life"
   How can one disagree? It is true, yet it was all too reminiscent of The Life of Brian with Eric Idle's song, "Always look on the bright side of life (and death)" after he goes off cheerily to be crucified, except that it might have been said by a bystander reminding him he was out for a lovely walk in the sunshine and didn't need to worry about wearing a hat.

   Now if someone had said to me (with certainty), "You're going to have two more years to live, with a satisfactory quality of life, and not make too much nuisance of yourself to those around you," I'd probably have been delighted. It would be something to look forward to.

   But when it's said at the end of a period of grace and with a poor prognosis, it doesn't feel quite the same.

   It's a bit like (not the same as, I grant you) being on a strict diet, but ignoring it and eating a meal of everything you're not supposed to have had. Instead of feeling great about it at the end, you wish very soon afterwards that you'd stuck to the diet. And the last person you would want to be reminded of it by is a fitness instructor with the body of a whippet.

   Or, closer to home, being reminded by the warden as a death-row inmate (an innocent one at that) as your pals chant "Dead man walking", "Hey – what's your problem? You've had more than two years of regular appeals to keep you alive, lucky boy!"

   So, I'm suggesting, don't say it. I'm not sure what you should say, but if you can't think of anything that is guaranteed to cheer up the person getting near end point, then it's my view that it's best to say nothing at all. 


  1. No, you would never have said that. It's a really crap, unhelpful,stupid thing to say, by someone who has experienced little. A small stupidity, typical of so many human beings, at a momemtous time. Put your mind on better things. That's where you belong. (do I sound bossy?) Oh too bad! You've told me often enough not to be so anxious!! Hugs.

    Julie M xx

    1. Thanks, Julie. I feel it was just one of those things that people say when they're looking for one bright spot in it all. I haven't dwelt on this. I just thought it useful to let people see through my window on what gets to be an increasingly sensitive subject. [And if anyone else is wondering, Julie's had her serious episode of dealing with cancer, so it's not the pot calling the kettle black. There's no such thing as a non-serious bout of cancer anyway.]

  2. I have to say that this person needs a sharp lesson in tact - but then I've often thought that somebody should write a book entitled "How to deal with the terminally ill without sounding like an utter pratt"! Problem is, most of us just don't KNOW what to say - to say nothing at all and talk about the weather seems uncaring and yet there is rarely anything useful or comforting to BE said. That's why some opt for euphemism and a breezy pollyannaism that denies reality. And others (usually the minority), knowing that the ill person sees through such well-meant mawkishness, opt for taking the blunt (see! I can talk about DEATH and it doesn't phase me one bit!) approach because they think it's more honest. In the words of the King of Siam, it's a puzzlement! I suppose the best policy is "when in doubt, say nowt".

    1. Pretty much it. The problem people are those who are in no doubt and no conception of why they should be. There are no facts about death I can't take on the chin, and that was right from the moment we knew it was a GBM[4].

      But there's a lot in what Ros says so eloquently below – and she and Dave have earned their right to be stating it as it is. In fact, long before I had any conception of such matters except as a bystander, they'd both done so.

  3. You're kidding aren't you? My money's on saying just about anything but an almost criminally inane quip about looking on the bright side! So sorry you copped a heartless, emotionally colour blind robot when a sincere and above all else kind oncologist was needed. More than anything though, I'm really sad at the result itself. So bloody, bloody, bloody unfair.

    1. Joie d'cake is Toni (potty mouth, doesn't play nicely with Google) Blackmore. Can't figure out how to make Google like me enough to let me use my real name.

    2. Not the oncologist, Toni, just to clear that up, and I had no wish to give that impression, because he's a most compassionate and knowing man. Just someone else trying to 'look on the bright side'.

      Fairness has nothing to do with life, I've said scores of times. There are 15 more people killed and dozens injured in Kabul overnight, many of them children. If anything's unfair, look no further than that.

      If you open gmail in a window or tab, and then go to the blog to make comments, there's a good chance that on a computer, it will allow it. The ways of google are arcane. On an iPad, it's a mystery. I've been all through the setting for blogger a score of times, but I don't see the way to guarantee it.

  4. I know in the past I've rabbitted on at length about this topic here on your blog, Den. So the only thing I want to say here is that it really gets seriously up my nose when a healthy, not-dying-yet person TELLS a chronically ill/teminally ill person WHAT THEY SHOULD BE FEELING OR THINKING!

    The person in your story said, "Look, never mind. After all, you've had at least two more years than you could have expected."

    TRANSLATION: "I can't handle your sadness and grief that your beautiful, fulfilling, meaningful, joyful life is nearing its end. I would prefer you felt full of gratitude that you've had an extra couple of years. Then you'd be light, bright and sunny and I wouldn't have to feel the reality of my own mortality. That reality is too scary. So buck up and show us some GRATITUDE...ok?"

    Sorry for the upper case letters. That's me shouting!!

    A relevant tweet arrived in my stream this morning: “My tongue will tell the anger of my heart, or else my heart concealing it, will break.” Shakespeare

    1. I know what you're saying, especially Para 1. I guess I'm of the opinion that well-meaning people who can't possibly understand can't be expected to.

      I look at a quadriplegic and I'm desperately sorry for them but I know I can't feel even a hundredth of what it's like. I see people with chronic severe pain – same thing. So I'm forgiving when other people don't understand, and I don't want people to be terrified of opening their mouths.

      All I do want is to show people where they might innocently slip up in my case, so they can avoid that particular pitfall.

      I know you cop a great deal of gratuitous advice, as does Tracey. Backing off is good policy unless people really know the score.

      The pot of soup or something like that - that works!

  5. You would never have said that. Even my 12 year old grandson when first hearing the phrase, "well he had a good innings " replied that the person would probably have liked a higher score - perhaps a century. And in your case the stress of the three week cycles makes it so much harder. Good luck for Next week. Anne P


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