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Living with Illness Coping with disease, getting help, dealing with family, staying optimistic, quality of life, hospice care

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Old Tue Mar 28, 2017, 12:32 AM
dnewman80 dnewman80 is offline
Join Date: Jan 2017
Location: Australia
Posts: 11
Comfort in Uncertainty

Im assuming that most of us on this forum have been impacted by a life-threatening disease. Each disease can be very different, and even individuals with the same disease can have dramatically different experiences. However, one thing we are all forced to experience/endure is the immense uncertainty about our future. We cannot predict or control how our disease will progress or not progress, and we cannot predict or control how long we have left to live. We effectively have to live each day in limbo.

From an emotional perspective, I believe that the concept of UNCERTAINTY is probably THE most brutal aspect of living with a life-threatening disease. So since we no doubt have a wealth of experience on this forum, Id like to start a discussion about is what strategies, methods, resources, or other helpful hints that each of you may have used to find (some) comfort in living with uncertainty.

Thanks in advance,
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Old Tue Mar 28, 2017, 07:37 AM
lisa3112 lisa3112 is offline
Join Date: Jun 2016
Location: Melbourne
Posts: 105
Hi dane,
I guess you try and live 'in the now'. Its hard to do, but otherwise, I would focus on the 'what ifs'. Also try to remember everyone has their issues... I might have had a life threatening disease, BUT I have a beautiful family and a roof over my head. I have just had my 1yearly checkup today and I know I have some uncertainties about it, but I can't change anything! Just have to TRY and be healthy and give my little boy everything I can.
Good luck all! Lisa
Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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Old Tue Mar 28, 2017, 09:50 PM
evansmom evansmom is offline
Join Date: Nov 2007
Location: Ontario, Canada
Posts: 203
Hi Dane,

When our son was sick, my husband and I found these three mantras very helpful:

1. It is what it is (no amount of worry is going to change anything)

2. It could be worse (many illness scenarios are worse)

3. Count your blessings (there are treatments to help keep you stable such as transfusions, medications, etc.)

They are simple and rather cliche, but remembering them daily helped us get through and look for the positives every day throughout our journey.

Best wishes to you.
Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

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Old Thu Mar 30, 2017, 10:56 AM
David M David M is offline
Join Date: Sep 2009
Location: Fayetteville, TN
Posts: 69
Living with Uncertainty


Your question is an excellent one, and it is something that really everyone in the world has to come to grips with at some level. Life, by its very nature, is uncertain -- we have no guarantees. For most of us on this forum who have some level of bone marrow failure, that uncertainty level is certainly enhanced.

I don't really feel qualified to speak for many of you. Many of you have had much more serious health problems than I have to deal with to this point. However, I have had enough of a taste of this to have a few suggestions for living with this heightened uncertainty.

Here are a few suggestions, and things that I have learned / observed... for what they are worth:

(1) Realize there are some things we cannot change.
None of us asked for these health issues -- we do not want these problems -- but we have them. Now what? Although we did not choose this disease, we can choose how we respond to it. Will we gripe, complain, and be miserable -- and make everyone around us miserable as well? Will we be angry at the situation -- venting and spewing our anger on all who come near? Or will we recognize that all this griping does not help in any way, and in fact, is quite destructive? I'm not saying that we should not fight our condition and resist it with all our being, but in doing so, we should focus on things we can do that will help -- not further destroy.

(2) Do what you can.
"What can I do?" Now, that is a great question to ask! You may feel helpless and alone. You may not be able to rid yourself of this horrible health problem, but there are things you can do -- both to get your body in the best shape possible for "the fight" and to maximize living your life. So much of this battle is attitude -- and the first thing you can do is shift your mental focus from saying "Just look what has happened to me!" to asking, "What can I do?" Simple things like drinking more water, getting good sleep, and eating healthy foods can go a long way to helping you be the best you can be physically. And laughter -- while maybe not the best medicine -- is certainly a very good and natural medicine! Try to look beyond your sickness and your uncertainty to find ways to help others -- this, too, is great medicine.

(3) Be knowledgeable, but don't obsess.
There is a ton of great information on this web site and on other helpful medical-related sites. It is great to be knowledgeable about this disease and all the various treatments and ideas related to it. You can literally spend your days reading and re-reading forums, articles, journals, and blogs. It can consume you. I would suggest that you invest some time learning about your medical condition, but do not spend your every waking moment of life fretting before a computer screen. Knowledge is powerful and essential for us -- but there is more to life. This is a scary time, but seek balance here.

(4) Enjoy the life you have.
Yes, I said "enjoy." One unexpected thing that I have experienced through this entire journey since I started dealing with this uncertainty is a heightened awareness of the little things in life that are now so precious to me. When you view each day of life as a gift, and when you know tomorrow is uncertain -- today becomes more special. Love, beauty, and relationships all take on a new intensity. I take more notice of sunrises and sunsets and beautiful scenery all around me. I enjoy and treasure time with my children like never before. For me, this whole uncertainty idea really has sharpened my focus in what life is all about. Maybe this has been true for others as well.

(5) Exercise as much as you are able.
We are all at different levels on this forum. My health has held steady over the years, and I am thankful for that. I have tried to stay active and to push myself to be more active than I really "want" to be. The temptation is to give in to the fatigue and just sit there in front of the TV or computer. Exercise -- even just walking -- is a sort of medicine all its own. Again, some of you may be in no shape to do anything! But to the degree you are able, even with the uncertainty we all face, it helps to keep physically active.

(6) Pray.
To me, this uncertainty is like standing on the edge of a great chasm -- and we do not know what lies beyond. One thing is certain in life for each of us, and that is death. That may be depressing to you, but really, no one gets out of this world alive! In our cases, we are dealing with a medical condition that may shorten our days on this earth -- and that introduces a new level of uncertainty. In the time we have, for me anyway, it has been extremely important to be at peace with God. There is so much uncertainty in life -- everything, it seems, is uncertain -- so it is very important that I be able to hold onto something that is unchangeable and certain. To me, God is a rock of stability in a stormy sea of uncertainty. Prayer is how we pour out our concerns to God, and we trust Him to hear and to help. Prayer is also where we express our thanksgiving to God for the many good things in life He has already given us -- many of which we often fail to notice. Being thankful to God is something that is often forgotten -- but it is so important to our overall attitude and outlook on life. (I could say so much more... I have my own understanding and views of God that I will not push on you here. I'd love to talk with any and every one of you about God anytime of the day or night! Feel free to message me...) I know some of you do not share this view of God or of prayer... even so, if not prayer, meditation has been proven to be a calming and positive practice that can be helpful in dealing with the anxiety of uncertainty.

(7) Have people that pray for you.
I could say here, "Have a support group that understands your struggle." For me, though, it is important that this support group be a praying support group! It has been a very powerful thing to know that people are thinking about me and praying for me. It is a powerful thing to be able to pour out my fears and troubles to a few people who truly care about my welfare -- though they may not always completely understand it. Anyway, this has helped me in uncertain times.

These are things that have helped me... certainly not a comprehensive list, but a few things. Again, Dane's question is very important -- and so relevant to us all!

David M
David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.

Last edited by David M : Thu Mar 30, 2017 at 02:08 PM. Reason: Things we can do...
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Old Tue Apr 4, 2017, 03:00 AM
Cheryl C Cheryl C is offline
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 838
I love your response David M. Your suggestions are the way I live with MDS. I have one more: when you are able, get involved in doing something to help those who are less fortunate. This is immensely satisfying and, I believe, health-giving.
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Fri Apr 28, 2017, 02:22 AM
dnewman80 dnewman80 is offline
Join Date: Jan 2017
Location: Australia
Posts: 11
Hi all,

Many apologies for taking so long to reply to your replies. Your contributions are fantastic! And thanks for going to such an effort David, there is some brilliant advice right there.

I raised this point because I felt that among all the advice you can track down on living with disease, the vast, vast majority is focussed on the physical aspects, whereas only a very small percentage is focussed on matters of the mind. Yet when you think about it, we are more likely to have than ability to influence the latter, rather than the former.

I think it's a very important discussion to have.
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