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eve 11 years ago.
The article below was written by Pat Killingsworth – a regular contributor to the American Myeloma Beacon. I read it and thought it worth sharing.
Although I know that some might find the article upsetting on the whole I feel that it is a subject worth discussing, or just accepting. Dai.
b]Pat's Place: It's Time To Stop Denying The Elephant In The Room, Death And Dying[/b]
[b]by Pat Killingsworth[/b]
[quote][
As a former drug and alcohol counselor, I was trained to identify and deal with the ?elephant in the living room? In other words, the painful reality that everyone would talk around but rarely face. It might be a family member?s alcohol or drug use, domestic violence, or incest.
Denying a horrifying reality isn?t anything new. But I never expected multiple myeloma to make the top ten list! That is, no one ever wants to discuss dying from myeloma.
Well, I want to ? no, I need to ? talk about death and dying.
Hearing your doctor discuss median life expectancy numbers is never easy. Nor is reading about it on the Internet.
When I was first diagnosed with myeloma, the sudden realization that my time on earth is finite knocked me down and wouldn?t let me get back up. But with time, I climbed back up and started to live my new, near-normal life.
I started to write ?with the help of friends and family,? but that would be disingenuous. Truth be told, few if anyone around me helped me deal with my new-found mortality, elevating it to ?elephant in the living room? status.
Living with a terminally ill cancer can be tough on everyone. I get it. And denial is a ruthlessly effective coping skill. But using it indiscriminately isn?t healthy. At some point, the primary actors in this life-and-death play need to admit that everything isn?t OK.
I may get it, but that doesn?t mean I understand it.
For example, to say a myeloma patient is ?terminally ill? isn?t allowed in myeloma-speak. As a matter of fact, I don?t think I?ve ever heard the phrase used in our world.
Why? Denial, of course! For a majority of us stricken with multiple myeloma, much of our lives are spent ?looking normal.? It?s the ?But you don?t look sick!? syndrome that makes it so easy to be lulled into a sense of complacency.
The irony of all of this is that most people are 70 years old or older when they are diagnosed with myeloma. One would think someone who had lived that long would have come to grips with their mortality, right? Yet even older patients and caregivers who have had years to adjust still can?t seem to discuss the inevitable calmly and openly.
Which brings me to another reason our denial is so insidiously enabled. It?s the wildcard that keeps survivors, caregivers, friends, and family members hanging on: open-ended hope.
Anyone who gets out to a support group or follows patient blogs or columns hears inspirational and hopeful stories about exceptionally long-lived survivors, some that live decades. Anyone grasping for a life-line might ask, ?Why can?t that be me?? And this isn?t an unreasonable question. New novel therapies are allowing some of us to live two or three times longer than our myeloma brothers and sisters did just a few short years ago.
Anyone who reads my writing knows I?m an optimistic guy. And yes, I will admit I hope I?m one of the exceptionally lucky ones, too. But to deny the reality of our condition isn?t fair to anyone. It may even make those around the patient sick ? and the patient sicker.
The same folks who remind you how you don?t look sick are also the first ones to change the subject the minute a patient or caregiver needs to talk about dying. No surprise there.
But what does surprise me is the way fellow patients often do the same thing. Shutting down an important life-and-death conversation doesn?t help the person who needs to vent or decompress, and it may not be good for the one who won?t let them share.
There?s an unspoken rule in many support groups that talk about death or dying is verboten. Perish the thought that someone wants or needs support in a support group! Sounds pretty silly, doesn?t it? I think so. But on the flip side, it isn?t fair to others in a group who still aren?t comfortable discussing the elephant in the living room.
My advice? Support groups can do what I?ve done here. Let people know in advance that the topic of conversation will be about dying. Then those who aren?t comfortable talking about the subject can opt out for that meeting. Or schedule a smaller meeting or coffee group to allow those who need to talk things out the opportunity to clear the air and get the help they need. Having an experienced therapist?s phone number at the ready for interested group members is a great idea. Experience tells me most of us need counseling from time to time, ideally from a trained professional.
I?m fortunate that despite some early challenges, I haven?t had to struggle with depression. But depression is a common emotional side effect that accompanies a myeloma diagnosis and treatment. With therapy that may or may not include medication, most can adjust and feel like themselves again. Denying it only makes things worse.
On an individual level, patients need to get past the concern that discussing death ? and what happens to loved ones left behind ? might upset those closest to us. Hiding how we feel from caregivers does them a disservice. But if they aren?t equipped to discuss reality, a patient (or caregiver) needs to find someone else who can help.
Myeloma patients and caregivers who refuse to acknowledge ?the elephant? are robbing themselves of a life-affirming experience. It is so freeing to accept one?s mortality.
I no longer fear death.
Pat.[/quote]
Hi Dai
I also read this on the Beacon and you are right found it very upsetting. I admire anyone who can accept it
Best wishes Jean x
Hi all
Well I class myself as one of the lucky ones and yes i dont fear death but am not ready for it, do we as a Family talk about it YES we do but more of a FUN(if you can make it sound funny?) way so we can lesson the tension that having a terminal illness throws upon you.
I went to a Support group a fair few times but unfortunately we lost them all (apart from me) and that is a hard thing to cope with watching and seeeing all your other MM folk around passing away and me ?? am still ok and that I find strange.
I hope the above and My Post gives you all strenth and know it is a doable to be well and Fit ish when they find what works for you.
Stay well and stay fit
Tom Onwards and Upwards x
Well I can only speak as as Slims Wife,I dread it all coming back,and I do have my blue moments.
Slim is just the opposite he does not worry at all,but he does not sleep a lot ,when I ask him is he is worried it will come back the answer is no.
His attertude is ( I never expected to live until I was 28 so everything. Else is a bonus)
There is no elephant in the room,it,s just a joke. I tell him I wil prop him up in a chair, like the mother in the bates hotel. Cannot afford to die,his pension dies with him.
He just says the has to be someone who is cured first,and it is going to be him..so the elephant des nt exsist in are house.
I do think people who have faith,and believe they go some were and meet the people who have gone before.are people with a great believe in god.I sometimes wish I had that faith.
The fact is people die,and when it is your turn you just hope you die without pain.how can you fear what you do not know .Eve
Norman would not speak about it – I wish he had.
I just have to believe that he has gone somewhere where he will be waiting for me when my time has come.
The alternative is even more difficult to bear and I am unable to cope as it is.
Jackie
On the contrary Eve, I don't believe in a god that causes so much suffering to so many.
But I do believe there is something, after death.
I like to believe my husband is around me often as I can smell him. My son and daughter in law told me they could smell him in there brand new car yesterday.
How can that be?
The elephant in the room after death is the worst kind.
That is when people refuse to discuss or divert the conversation, in such a way to make it seam as if your partner for years never existed or mention of them is like a dirty word.
That is more painfully than not touching base about our own mortality.
We all know we are going to die at sometime of something. Myeloma patients have a tiny head start in the guessing game, but nothing is certain. Except taxes. You can be certain your gonna have to pay them,
Even when you die they still claim the taxes you owe.
Min
PS having been in discussion with the tax man for the past 6 months about one small underpayment which they refunded then waited a year to demand back I am CERTAIN they ain't gonna get it from me! Till I die
Hi Min
I suppose the difference is you have been there I have not,I do not know how I will feel,that is yet to come,mt daughters think I will go off in the motor home,but you cannot say until it happens,at times I do wish I had my life back instead of being in this bubble,but I do know people who are no longer in the bubble but life has not changed for them.
At home life goes on as usual,but we do not travel any more,it is hard work!!,we plan for the future although we do not know how long the future is,when. Slim was very ill ,my mind prepared it,s self for the worst,when he was over that,I just thought I cannot go through all that again,he remembers nothing which is good,it's like most things when you are scared,you make a joke of it,because if you worry about it,it will claim you health as well.
Also
Min people like you who have picked up the pieces ,help people like me,who have to go through this.Eve
Hi Dai.
Thanks for posting Pats article. I read it on twitter, I follow him as he has some great insights and info, and found it to be very apt. I have found that those around me look at me and think I'm beating MM because I "look well" but I'm not. I know it's a fight I can't win. I'm living with MM I can't even get to SCT I'm on drugs permanently till a miracle cure is found or I die – hoping for former but expecting the later.
When I'm out and about friends say your looking well I feel I should carry my medical notes for them to peruse but I wouldn't be able to lift them :-/
I know this sounds like a rant but it's not. I accept where I am and I do try to remind close family and friends my time is limited and I could go quite suddenly but hey we are all terminal. NO ONE KNOWS how long they have got healthy or not a bus may take out me before MM does. But until that happens I will talk to and inform everyone who cares that to me everyday is a gift (got that from a support group meeting Tuesday ) I will live each of them the best I can. The more it's talked about the easier it becomes. In my humble opinion.
Everyone MM's, carers, family and friends enjoy today but be aware of tomorrow EVERYDAY IS A GIFT. 😀
Sorry if my thoughts upset anyone.
Wishing you all the best
Andy x
Hey Eve when you go off in the Moterhome bring yourself and Slim down to Sunny Scunny we have a nice place for the capming fraternaty pretty near us in Sunny Scunny 😀
Andy
I was at work today when some one asked me how i was doing and as i started to tell him another workmate ? walked in and heard our chat and said "Oh are we on about this death again ??" so I said to him "If you were going out Friday and today you felt a spot comming how would you feel?" he said "I wouldn't go out on Friday if i had one :-0 " and i said Just think how I feel being told that life expectancy with MM is Five years and I was told in 2009 that I had it ?? Do your Maths Dick head. I know how you feel Andy I same as you and others and thats not a Bad thing unless we are faced with people like I have had today 🙁
Keep well you all
Love Tom Onwards and Upwards xxx
Hi Tom
We only live 20 miles from France,and they are so moterhome friendly,believe it or not its cheaper to spend a month in France,than a week in this in UK.So if we manage to go away it will be France.
Now Slim looks well,if anyone ask how he is I say fine,because if truth be known they do not want to know!!! And they don't want to know the in,s and outs of it.at least you can come on here and say how you feel and people do understand, but I have noticed people are reluctant to give bad news,I understand why,we have to have hope,because it is a strength,that keeps people going and no one wants to upset anyone.
So may be we should be more honest with are selfs on here???Eve
Tom
Your right there are some right dickheads out there wrapped up in their own little worlds where nothing matters as long as they can breath, drink, smoke or do whatever THEY want. But and it's a Jennifer Lopez sized BUTT there are lots of people who do care. The problem a lot of the caring people have is vocalising their caring side. Some can come out and be blunt and ask how you are and really dig deep into your problems but others want to know but are scared to ask in case it upsets you or them. I find it helpful for me personally when they dig deep – but I appreciate everyone who takes time out to ask after me no matter how little detail they really want to know.
Eve
I know what you mean about being reluctant about giving bad news. It's why I don't post as often as I should. I see the newbies, unfortunately joining all the time, being optimistic about a few rounds of chemo then on to SCT. I keep my thoughts to myself about how it doesn't always work out like that. Some? lots? Have to struggle really hard to get to SCT and endure real hardship to get there – as you know with slim. Some don't get there at all. But that's not the end of it SCT works fantastic for some but not so good for others. This is the reality of MM but I find this reality is hidden away. I think the bad side of treatment should be highlighted as much as the upside but when and how this approached I don't know.
Everyday Is A Gift
Andy x
Hi When Michael was given 3months to live by his consultant, the reaction of most people was, but he looks so well, and then avoided us like the plague.
My family used to say people were frightened of upsetting you, but we were already upset and this added to the situation.
Even now after his death when I go outside the front door, neighbours nip inside so they dont have to speak to me. Yet yesterday my daughter took me to the coop travel agents to book a holiday. After a couple of hours we found what we wanted, the young women behind the counter asked if it was for a special celebration, I looked at my daughter and she said my dad died 3 weeks ago and I wanted to take mum somewhere special,the young women got up from the counter gave me a hug and started to cry, but that wasnt the end she asked about MM treatment and everything, when we left there was no awkwardness or anything.
It just shows once the initial shock is over it can be spoken about without the bowed heads and no eye contact
Regards
Sue
Hi Sue
Well Sue the reason they say oh,and walk away,or go in as you come out,is they cannot face it and by looking away they think it will not happen to them,but when something like this happens to them,who do you think they will go to for support and advice,I am sure I do not have to tell you the answer.
I had a conversation with a consultant today it went something like this.
I asked about maintenance with Velcade as Slim has had 2 years of gruelling treatment,and do not want him to go through another treatment if there was a chance of Velcade maintenance which we were prepared to pay.
Answer was the treatment for Myeloma was not gruelling!!!!!!
He asked if we had private insurance,the answer was no, he dismissed it without giving us any figures for treatment,do you think it's my white hair,that we did not deserve an answer!!!!!!
A couple of weeks ago,I asked for Slim to have a BMB as it is the only way,to tell if its,coming back,I phoned yesterday for results which has been filed and not looked at,I know how to ask direct question so it went what percentage of Myeloma cells were in the bone marrow
The answer was 10 percent.
An appointment was made for today,the general treatment is you have to sit back and wait.we did manage to get a MRI scan plus full Skelton ex rays,and BMB in May.
So the conclusion is we were prepared to pay for Velcade dismissed
All you people who are going through Myeloma Treatment,the expert says its not gruelling(makes you laugh)
If you did not laugh you would cry,I think that elephant has escaped from the cupboard .I think I will have to find a white haired mouse to frighten it away.
By the way Slim look good,he even had women playing with his curly hair on Mother's Day .Love Eve
Yer correct you lot its nice to be nice BUT Lol, and Eve am sure you shouldn't tell us Slim was having his curly's played with Ha ha xx
Love Tom
Hi Tom
His pubic hair never came back. Lol.Eve
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