The Leukemia & Lymphoma Society - Fighting Blood Cancers
7 Replies Latest reply: May 26, 2012 2:51 PM by sweetpeas_mom RSS

Dealing

Isha206 Registered Users
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And then there will be days like this. It's 3am and I am wide awake Hard day, since the day my daughter was diagnosed I've tried to keep a chin up but the world feels different after her diagnosis.It's  meaner insensitive malevolent lonely or that's the dark side of leukemia and Life. Back to work and while everyone says the right words I sense their "waiting and watching" I am the same person but under a microscope, waiting  for me to crack and so I can be pushed into part time . When I called my supervisor and told him I was coming back to work I was told I was not ready!! Then my colleagues made a plan and  took on themselves to enquire and work out how I can go part time because I need to care for my sick child and then also get a second job to help me pay bills .The same colleague who told me about my daughter's diagnosis " it s sad but you have hope it's horrible for x whose child is special needs" while I cant imagine comparing the plight of any parent with any child with a medical illness .Back at  work but its strange how  people watch me but very few make eye contact .I walk by hushed whispers, people avoiding eye contact . I hardly talk about my child or  her treatment I don't bring it up just get the job done efficently it's hard to mention what she's going through or what's happening  when it's all  so easily dismissed and minimized because well leukemia has a good prognosis and "children are resilient" so it's no big deal. I don't expect my colleagues or people who work with me to put ther lives on hold for my situation I expect it and I do my share but through FMLA I have to take time off I dont know I m afraid if she gets sick or has to be hospitalized it's going to give some people the ammo they need to push me parttime. If I could afford it I d start buying lottry tickets but lol Im so down on my luck any luck there is pelase rub onto my baby.

  • Re: Dealing
    robbieh Registered Users
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    Sorry you're having such a bad day/night.  People at work can be such inept idiots when it comes to issues with children.  It makes them uncomfortable and they just say stupid things.  Only explanation I have for it.  I had to chuckle at the part about x's child who has special needs.  My daughter with cancer has Down syndrome and I have got to tell you that there is no comparison between the two...Her DS is just part of who she is and contributes to her unique little personality, quirks, and the way she goes through life.  Unless the special needs diagnosis is life threatening like cancer they are not nearly the same.

     

    I am fortunate and was not working prior to her cancer diagnosis and not trying to work or worrying about working.  But when she was born I worked up to the day she was born and came back after my 8 weeks leave, and people acted so weird about her birth.  Way different than they had after the birth of my first child 3 years earlier who was "normal."  Ha.  Now that she's 17 sometimes I wonder, LOL.

     

    I have no answers for you but just know I'm thinking about you and your child and don't let people at work get to you!

  • Re: Dealing
    abslater Registered Users
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    Sorry to hear about your tough day ...we all have those terrible days....and I agree - most people are outright idiots. I'm lucky to work from home, and find that I don't discuss my daughters health situation with anyone - its much easier being virtual. I do find that there are neighbors who I've known for 10 years, who conveniently look the other way when they see me out walking, or in the grocery store ...but I've come to terms with the fact that some people just don't have the depth or ability to handle things like this -- hopefully life won't come along and slap them in the face to wake them up - I wouldn't wish this on anyone - even the clueless parents, because our children are innocent. Make sure you look into medicade and all state run, or federal programs. My hours have been reduced to part time, and it's a blessing, I don't know how I could have made it through the year otherwise. We have been fortunate with our healthcare coverage and medicade - we've just cut back in other ways so that part time is ok. Maybe there is a way you can make part time work ....you deserve less pressure ....hang in there ...and you know whats important, so ignore those idiots ...and take a deep breath... b

    • Re: Dealing
      josefsdad Registered Users
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      The heck with them. Yeah I know much easier said than done. Most of them will never get it. My son is almost done with treatment and I have missed very few days, aside from initial dx. Choosing to come to work in the am after spending a sleepless night at the hospital. For me it makes things seem better if I can work - plus I dont want to use sick days if I can help it because maybe I will really need them in the future. I know this is much tougher with only one parent being able to take time off.

       

      I have noticed that my work colleagues cannot really comprehend that he is still doing chemo, that has good days and bad days, and that we have know idea if he is cured. See they just want an answer to know if he is ok or not because who knew chemo could be so long. As far as the comparisons to other issues it is really a silly game but I guess we all play it but only some people express it. When people ask me for his prognosis hinting they want a number I just tell them it is pretty good but we don't get to keep 85% of him - it is 0 or 100%.

       

      For me I just can't keep it all in and I think over time it has helped at work. I do not talk about it too much but if I miss a day or leave early to go to clinic appointment I will tell them yes Josef has chemo at the hospital today. Over time my closest work colleauges have come to understand at least this part better.

       

      Please forgive me if I gave too much advice as a guy I always want to fix everything and not as good at the listening/reflecting part. Yes, cancer sucks and when it is your kid it sucks 10x more. Hope your days ahead are better.

       

      Jon

  • Re: Dealing
    Gabbiesmom Registered Users
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    I think having a kid with cancer isn't something that anyone can explain to anyone else ever. Unless your there with it, you just can't get it. Its why I keep coming back here back here!  I know you all get it! 

     

    The other day a girl in Gabbie's clinic about 6 mo behind her in treatment relapsed, and I cried, but in secret, because I knew no one would get it why I would cry about someone elses kid. It just hit to close to home.

     

     

    Hugs to you!  And hand on and in!

  • Re: Dealing
    VendettaSRB Registered Users
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    Maybe it's silly for me to post here, since I'm only 17 and am still(well not now) going to school. Since I was diagnosed with ALL, I didn't tell any of my friends. At first I wanted to share it with someone, but I realised that the only thing the truth can get me, is a lot of pitty. And that's the stuff I hate the most. This way they just think I'm sick with something that's not so naive, but not so serious as cancer. And I feel good. I had my share of support from my family, and without them it would be impossible to cope with this.

    And by choosing not to tell my friends, I get to talk to them as I used to talk before, they haven't changed at all, and I feel their honest support, without the "fear and pitty" part when they say "Hey how are you, when are we going to hang out again"?

     

    But at the end of the day, child friends, and adult friends are a lot different, so I don't know how my post here can relate.

    • Re: Dealing
      abslater Registered Users
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      HI again...it's not silly for you to post here at all --- its actually really important that you do. My honest thoughts are that you should tell your friends....

       

      What I will tell you from experience is that one of the good things about facing things like this, is that you can find out who your true friends are quite quickly ....some friends will stay with you on this fight ...some friends will really disappoint you, and will fade away. But I don't believe that you should hide this from anyone, it's too big and you need the true friends to understand. You have nothing to hide - and to have their real honest support you may want to let them in on what's going on in your life.

       

      My daughter is 13, and she didn't want to tell anyone at first either ...but almost everyone knows now, and really, I promise, it's not a big pity party. The great thing about kids, and teens, is that teens are more real than most adults -- it's the other parents and people my age that have the whole pity thing going on --- her friends are totally normal to her ....sure at first they gave her gifts, there were some tears and worrying and they didn't really understand - but they asked questions, and we answered them -etc - but now, they just hang out like they always did - but they understand if she's tired, or has had enough - they just get it - and they support her. Also, oddly enough, when she started telling friends, they had their stories too, of other friends, or relatives that had ALL, etc - it wasn't as foreign to them as we imagined, and it helped make her realize, she wasn't the only one to walk this walk.

       

      Anyway, I think that you need your friends around you during this ....you don't need to hide or do this alone ....I know we're oceans apart ...but you can always reach out here, I'll keep an eye on you   or at least have an open ear and an open mind to listen if you need to talk ....b

    • Re: Dealing
      sweetpeas_mom Registered Users
      Currently Being Moderated

      Hi Vendetta,

       

      Some people act weird when they learn that someone they know has cancer.  Those people won't really know what it means- some kinds of cancer don't have effective treatments, and then they would feel pity or sadness at the bad news.  Some cancers like leukemia do have effective treatments, but the person getting the news will not know that at all, and probably be scared for you.  A lot of scared people get quiet, or disappear, and some say really stupid things.  So, somebody needs to help them understand what's going on.  Not emotional, just the facts of treatment:  you have about 6 more weeks of chemo, then you'll be rebuilding your strength, but still have some lighter treatment for awhile.  Many kids with treatment are participating in school and getting back to sports during this time.  The doctors will be keeping an eye on you, but you should not be treated like you will break.

       

      I don't know what adults at your school or teams may know about your treatment.  The cross country (running) coach was a great support person for my daughter, both in his messages to her, but also in that he helped the other runners on the team know how to support her without feeling awkward.   Perhaps your mom or dad would be a good person to take this message to a coach that you trust?    Maybe give that adult a little time to understand the information, and then pass it on.  Sports teams, of course, are dedicated to improve skills to succeed at the sport, but I hope they are also about building team spirit. 

       

      I don't know if any of these comments will help.  If not, can you imagine this:  a friend of yours has a disease that is making him sick for a while.  He doesn't want pity, and he doesn't want to be treated like glass.  He could ride bike a little, check out some new music, watch sports (are you watching the Giro d'Italia?  The last stage should be great!   or what ever you like to to).  How would you help that friend?  You might have a few questions, you'd want to know what would work for them, and then you'd just do what ever you could to help your friend.

       

      Cheryl

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