5 replies to this topic

[valiantchong]

Ever since I found out my sickness, being depressed, being hopeless and living a life that is full of uncertainties haunts my mind. The idea of waiting death has been playing in my mind ever since, feeling hopeless is the first thing.  Being deprived of living a carefree and hopeful life is another, robbed away of happiness...The question of how to feel free and enjoying living is being snatched away by this sickness.

Before I could live a care free life, whether in food, investment or in any risk decision making could bring a sense of happiness and achievements of life. But now even a simple kind of decision in what food to take will let me think of my sickness, example junk food will let me think twice if the food will make my CML become worse.... It makes me sad, everything one does the sense of fun is not there anymore....... What if one take the risk and turn out to be a bad decision and cost one life? Or what if ones stay low, do not take any risk in life sitting and wait things to come by where it could means nothing will happen and deprived of excitement in life... like a boring dead life to me....Living a life with fear  is no different of being dead...

How one could think to live a happy and have a "normal life" to regain self-confident in every decision making in life again...

The sense to feel happiness of making decision in life is being deprived. Example, if a patient wishes to start a family, I belief, the worried of whether ones could have a normal healthy child will haunt his mind daily until the child Is born and grown up....What if the child is not normal, will one regret taking the risk and start blaming oneself a lifetime... Where is the sense of freedom of choice in mind to make decision without feeling guilty if the decision is wrong later...Or one to lead a passive life with no excitement and happiness; like living a life waiting for the final day to come.

How could one be happy and live a life to the fullest again when the sickness is bugging in the mind??? i.e. How to debug the mind and start living with a small sense of happiness ?

Should we pray to god and wait for his response... ? Why there is so many suffering in this world without reason behind or we just do not have the knowledge to comprehend why...The question, how could we live a carefree life with a sense of excitement again...How could a life be contended without excitement and carefree or am I too greedy to have the rights of living? Sad to say being sick is equal to deprive of the right of being normal and happy....?? I am not feeling sorry or bragging...? Or is life is like a box of chocolate, you do not know what you are going to get. Or do I need a shrink or just me.. ??

[dolphin]

Hi there ...

I completely empathize with you and understand what you are going through. Every couple of weeks or months when the reports come, reality hits and makes me realize how unpredictable life can be.

Having said that, I believe that one has to move on and fight this battle. You should  be grateful to God that we have been given the chance to fight..

When my mom was diagnosed with CML i felt exactly the same things, however I started focusing on God and his power. And I know that he will help my mom fight this disease and give us all strength to help her fight it.

I suggest you start meditating and try to calm your mind. Don't under estimate the power of praying everyday and positive thinking.

My heart goes out to you and I really wish I could help you ...

[PhilB]

Hi Chong,

You're having a perfectly normal reaction to all this, but it can get better and eventually it does for most of us.  We are all going to die.  We are born with the return half of our ticket already stamped.  Fortunately, humans are really good at ignoring this fact and getting on with life as otherwise no-one would ever get anything done as we'd all be too busy hiding under the bedclothes.  When you get a disease like CML the reality of your own mortality jumps out at you and shouts BOO!  It takes quite a while to get used to that and to start being able to ignore it again like everyone else.  That wonderful skill comes back slowly, at first it can seem impossible to forget about it even for 30 seconds, then one day you'll manage a whole hour whilst you get engrossed in a book, or a film, or riding a motorbike, or whatever works for you.  At first these times of forgetfulness can be really hard as when you do remember it comes like a hammer blow all over again, but little by little the forgetfulness goes on for longer and the rememberance becomes less painful.

If you have faith in a God and that helps you, then by all means pray, but I would counsel against doing that constantly or anything else that leant towards obsessing about the disease.  As our old friend Sloater always says 'What is, is.'  Other than taking your meds and using Trey's expertise to keep your oncologist honest there's nothing much you can do to change the destination of your journey so you need to concentrate on enjoying the ride.  Don't fret about the things you can't do any more because of side effects or whatever - concentrate on the things you enjoy that you still can do.  And go out and do them good and hard.  If you do the things that make you happy you will become happy.  If you worry about the things that make you miserable you will be miserable.

Eheu Fugaces

Phil

[valiantchong]

Hi,

Thanks for your all responses. The reason is to pen down the my thoughts and feeling, at least to release the stress inside and feel better. Over here to let everyone aware, we are not alone...

May a cure be found in near future, so that we could regain back a true normal life.   

[CallMeLucky]

Chong - if it helps at all, I often feel the same way.  I question many things about life now that I never thought seriously about.  Many things do not make sense to me and it frustrates me.  I really get what you are saying.  I can tell you that as Phil described, my time feeling that way tends to get shorter, I do not think about CML every minute like I did first few months.  Sometimes I start to feel good for a few days and then something happens that knocks me back a little, but I find that I bounce back in a few days.  Support from this group has been very helpful.

As hard as it is, if you take a moment to look at what you wrote from an emotionally disconnected and objective point of view, what has really changed from before your diagnosis?  Pretty much every theme you discussed was valid in your life (and every other human being) before you were diagnosed.  Questions about life and death, the reality of mortality, the decisions and consequences about eating unhealthy food.  The contemplation about having a family and the fear of having an unhealthy child and how you would blame yourself for it.

All of these themes existed before you had CML, the only thing that has really changed is your sensitivity or awareness of them.  I worried constantly when my wife was pregnant about having healthy babies (before I had CML), and I still worry everyday about my kids, if anything happens to them ever, you always feel guilty as a parent.  The mysteries of life, your belief in god, the uncertainty of what happens to us after we die, these are all things that are very much real to all humans.  Unfortunately we have something in our lives that forces us to examine them more closely and think about them more seriously, and perhaps at a time or age in our lives when we did not think we would have to.  Some may consider it a gift, others a curse.  I know I value life more now than I did before, at least more than I realized.

So side effects not withstanding, because that is a separate issue and yes it can be a constant reminder, but separate from the side effects, the odds being what they are, things have not changed all that much for you from an academic point of view.  You are still a fragile life form in a dangerous world, just like the rest of us, we are susceptible to all kinds of harm and illness, but overwhelmingly, we tend to carry on.  The odds are you will carry on, as will most of us.  So now we have a decision to make.  We can spend that time - be it a few months, few years, or a few decades, worrying about the inevitable, or we can challenge ourselves to rise above our fear of death and make the most of our life.  No one knows for certain what comes next or if there are any second chances, we only know for certain that we have this life to live.  We've been thrown a curve ball, but the game is not over by any means.

When my wife's friend heard I had CML, she spoke with my wife about her father who also has CML.  She told my wife that he was in the original Gleevec trial.  He had been sick with CML for a few years, was taking inferferon shots and had told his daughter that the side effects of the treatment were really just too much and he had decided to stop.  He felt he tried enough and did not want to suffer any longer.  Gleevec came a long and he has done very well on it.  In the years that followed since he has been on Gleevec, he has traveled extensively to Europe and Asia.  He has taken up a wood working hobby and built very nice wooden trains that he gives to his grand children and others, and when his daughter became pregnant, he hand crafted a beautiful wooden bassinet for the baby that he never would have known.

There is so much more to do in life.

Try to stay upbeat as much as you can my friend, negative thoughts beget negative feelings.  Allow yourself to be sad when you need to, but try to find something that you enjoy to take your mind off it when you are feeling really down.  We all understand how you feel and we are here whenever you need to talk to someone.

All the best.....

[everonward]

Hi there

I've lived with CML for 5 years adn 3 months and yes I say I live with it. It took time to come to terms with the fact it was more likely to be something else that does for me in the end. Now days I only get down about it on PCR months - brings it home. It has taken time to realise that I cannot do as much as I did before but then I am 5 years older too,  Try and keep your mind active so as not to allow time to dwell CML. I agree with Phil do what you can and except some changes, embrace and love the life you have, it does get easier. 

One thing that I did when first dx was to ask my friends, family and work colleagues not to ask me if I was OK or how I was doing every time they saw me - this meant I stayed me and not the cancer.

it is not easy but life never is and we do have a life - I am sympathetic to the way you feel right now, but as others have said try counselling and allow yourself to feel it's unfair sometimes.

Positive thoughts coming your way

Marian