The Leukemia & Lymphoma Society - Fighting Blood Cancers
4 Replies Latest reply: Oct 8, 2011 3:55 PM by Puddintate RSS

CK Parents Lost the Charm

balkan123 Registered Users
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After going throu this ordeal....Life has changed.....As parents of CK...Only Child....We feel that charm of life has gone....And it would not come back now..........I have seen people saying we are living every minute of it..........Going for holidays.......MAW trips.....

But here there is no wish to visit places left.......Eating,Drinking or all taste of life has gone.....Even the desire to make money has gone ...........Life is so brittle...

Son is doing fine rather till now is scratchless........no bad effects.......

If I dont read the stories......It was a 7 month very extensive treatment disease and now all is normal or new normal......

But relapse scares and kids with same disease coming on nation TV and News Fighting or Survivor tags keeps me on edge..........

Hope one day charm comes back!! Will it!!

  • Re: CK Parents Lost the Charm
    Evan'sMommy Registered Users
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    I don't know.

     

    I think I feel the same way.  Now that we are through frontline treatment and on maintenance, everything was supposed to be fine.  Actually it is fine, Evan is doing wonderful and hardly has any side effects (except for steroids) and I couldn't be more grateful for how awesome he is doing. 

     

    But yes I hear about relapses and children passing and it scares the shit out of me.  Like a game of rush and roulette and we never know who will be next.  I try to take a break from the boards and other cancer mom support groups and try to be normal, like the old normal.  It's not possible.  I still don't sleep at night and now the weight gain and binge eating is coming back.  I am having panic attacks ( I think)

     

    I feel like I am crazy sometimes,  but when I go out in public I feel so different than the rest of the entire population.  I wish I could just scream at people to stop being so petty! I envy their innocence, normalness, and happiness.  Then I just turn around and lysol everything as I try to avoid everyone for fear of germs.

     

    I savor every moment with my kids and am grateful for every second I get to hug and snuggle them yet at the same time I just feel so uuhh like I just want to sit at not do anything at all.  I'm home all day and my house it still a wreck!  There been days where I haven't showered or brushed my teeth and I realized it's 5pm and I just pissed away the day.  The only thing I do do everyday is make sure my kids are fed and medications are administered.

     

    I never understood really what everyone meant on here about crying in the shower.   I've always looked forward to maintenance, to being off treatment, to being 15 years off treatment, etc.  But about a month ago it hit me that I will never ever get to be that semi-sane person I once was.  I will always worry now.  Every ache, every bruise, every fever, etc. I will be up freaking out even when my kids are in their 30's!!  I went in the shower and I cried.  I really sobbed and cried at the loss of the carefree person I will never get to be again.

     

    I think you might just be depressed, I think I might be depressed with some anxiety issues too.  The good thing is at least depression is treatable.    Damn cancer! I freaking hate it!!

  • Re: CK Parents Lost the Charm
    tlblmom Registered Users
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    Hi,

    Oh yes, it's changed so much.I suppose I will never be the same. I am often very scared. My son coughed last night and I was suddenly sure that he had relapsed, even though there was no cough at diagnosis. I was so grateful to have him examined today. He is on a chemo hold due to low ANC, but otherwise, supposedly fine. I guess I am just jittery....all the time. I feel like I am from another planet, visiting this Earth, seeing these other Earthlings from a distance. Sometimes I hear people say "I just had the WORST day - traffic, work, allergies...." and I think "you have no idea". It isn't a mean thought, just a statement of fact, that my ordinary existence is completely different from theirs. I suppose this is what they call "Post Traumatic Stress SYndrome". In my case, I have two other children, and I simply cannot completely check-out emotionally. They need me too. In some ways, they return me to this planet, where it is very difficult to choose between an ice cream treat and a doughnut treat when I take them out for goodies. Yes, a difficult choicethat they must think so carefully about because it is IMPORTANT and it must be discussed in great detail, and I should care, and I will it, and I listen to his sweet words, and  then I do care, but only because it is my little boy and he is endearing and so precious to me - but I still don't care so much about that lady's bad traffic day.

  • Re: CK Parents Lost the Charm
    greeney Registered Users
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    You know we are 4 years off treatment....daughter 6 y/o ALL now 12 y/o....We had a pretty rough trot of it with a systemic fungal infection thrown into the mix, this caused us to be inmates for the first 12 mths of her treatment. The hospital was hours away so my daughter & I endured long seperation periods from my husband, her dad, my other kids, her siblings, it was tough, I felt very alone most of the time, I was shattered but couldn't possibly acknowledge it as I couldn't afford to crumble. My husband was supportive in his role of keeping the home front running at that time, but upon us finally coming home I did feel a sense of abandonment, I didn't have his shoulder to cry on, like I had done the really hard yards with our daughter while his role seemed much easier, less emotionally draining, not witnessing the everday painful struggles as I did, the daily anxiety. I felt he had a certain detachment from the situation that i didn't have the luxury of having for just 1 day, but I kept it to myself and soldiered on because we still had 2 years of treatment to endure, I again couldn't possibly acknowledge it through fear of crumbling, I had to keep that auto pilot button on. I began to allocate more medical responsibility to my husband, I wanted him to see and feel the same pain as I, it was only then that he began to relate to me and we became a team again.

     

    Firstly, I couldn't wait to enter into LTM as the past 12mths had been an absolute nightmare, eventually we did...I didn't feel any different......secondly, both my husband and I couldn't wait until the end of treatment, then we were there.....we didn't feel any different, we didn't even feel like celebrating, we were so tired, but we did for our daughter. So here we were finally, IT'S OVER, or so we thought, we didn't realise we would be flooded with fear & uncertainty once again..... we couldn't wait until the first 2 years of remission had passed, then we were there...we started to feel slightly relieved but not much different.

     

    Now we are 4 years remission, we get on with life and do as others do, our kids are growing nicely, they have a maturity that other children lack, there lives are busy as is ours, we all live, but there is this void in our lives and it's our void that no one else can even begin to identify with, we don't want it to be that way but it's there no matter how normal we appear externally, and we realise there is no escaping it. Our life is like the square peg trying to fit the round hole....we will never fit, childhood cancer took us to another level, a deeper level of thinking that others don't understand and we don't even try to help them understand, we trust us and we all lack trust in others, but we don't show that openly as to others we are the picture of normalcy......it's our families closely held secret.

     

    We have very bright and fairly wonderful lives with just the normal everday family dealings, but the day childhood cancer struck (and constant reminders) a certain spark was smuthered.... never to return again.

     

    Best to all

    Jenn

  • Re: CK Parents Lost the Charm
    Puddintate Registered Users
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    I couldn't agree with this post more!!!  Abigail too is our only living child (our son passed away 11 years ago) and she is truly our world.  I have become so angry and somewhat bitter since her diagnosis.  I am angry at all she has to endure medically, emotionally, socially, you name it!  I am also angry that we as her parents have been given the very difficult job of watching her suffer, be afraid, be lonely, etc...it is heartwrenching to say the least!

     

    LIfe is different for me now.  I know the pain and grief of losing a child because of losing our son Caleb in July of 2000.  The pain that comes from the loss of a child is like no other.  It is one of the darkest and most difficult places to live in day after day.  I think that is why I am so afraid of losing Abbey...I know what it will feel like if it happens and I do NOT want anything to do with that kind of grief again!!! I don't think I could survive it a second time, I really don't. 

     

    I wish I could get to a place where I was able to enjoy something in life.  Right now, I am just thankful when I am able to get a few hours of sleep each night because then I don't have to think about Leukemia and what Abbey is experiencing or the continual fear of relapse.  I still wake up and the first thought in my head is about Abbey and her disease...I hate that too!  I have not found any peace since she was diagnosed and I don't find much joy in anything right now.  I am usually a glass "half-empty" person anyway, so I know my personality doesn't help much.  I used to love my job (I'm a special ed. teacher), but now my heart and mind are with Abbey and I would rather be with her than with my students.  I am the sole insurance person in our family so me not working is not an option, unfortunately.  I think it's natural to want to be with her and not at work, but I used to find such joy in what I did with my students and now I am just so afraid that Abbey won't survive this and I am not spending every minute with her now while I can (see...glass half-empty person here...).

     

    I wanted to thank you for sharing your feelings regarding losing the "charm" of life.  I think many of us feel this and hope it will return one day...sooner than later!

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