I am sorry ahead of time but I am so frustrated right now. My husband and I are 28 and 29 and a lot of our friends are that or younger. Some seem to not be growing up and taking care of their personal issues. While we take care of our daughter Morgan (two and a half) we watch friends of ours (or people we know) just whine about everything their child does or what is wrong in their life. I know that I should be sympathetic but when I hear " My kid is sick and has a cold, I feel so horrible for them." I go really???? You want to see sick??? I know that you don't want to hold your super skinny child while they are throwing up like the exorcist, end up covered in their chemo puke, have to clean everything up only for it to happen again the minute you are done. Then watch them try to throw up but there is nothing left in their skinny body, they are shaking, they are as bald as can be and the next day they get more of the poison that is making them so sick!!!
Also, we have friends complaining about making enough money. Money.... you really want to go there??? Cancer treatment is expensive and before our new health care bill went through my daughter went over her lifetime max!!! REALLY??? AND I can't go back to work full time because she needs the care.
I just want to scream but I know that people never believe that anything really bad will ever happen to them. I am frustrated and the only place I can get it out is here so SORRY!
You came to a right place.
On this journey, I've found that a few of my friends are really there for me, but others simply cannot be. In some cases, I think the concept of a truly sick child with cancer is too much for them. The very thought of it overwhelms them, or it simply doesn't compute. It is so beyond the world they live in, they cannot comprehend it and it's as if we are speaking Martian. And frankly, to me, it's as if they are speaking a foreign language back to me. They are in their own kind of denial. So they say weird things like "we are so upset because our pet has cancer...." really? your pet? how sad. The thing is, a year ago, I would have said it with heartfelt sympathy. I'm sure having a beloved family pet that is ill is tough,especially on the kids, but today I have more important things on my mind and the thought that your sick dog is in any way comparable to our situation is.....insulting. Or, about my son's difficulty walking due to neuropathy "I had trouble walking when I was a kid, so I know what you mean, but I'm fine now and he will be too." No, I don't think you know what I mean and gee, I wish it were that simple and I will feel lucky if he gets to grow up and luckier still if he is still able to walk. Mostly, I think people mean well, and I try to look past their words to see that well-meaning part shine through, but some days, I'm especially down in the dumps and their words hurt, they don't help. So, when that happens to you, just write a letter like this,....."Calling all Martians!" and somebody here will hear you.
I wonder...if I say to someone who is truly well meaning and is overwhelming me, maybe if I said "I'm sorry I can't have this conversation right now. I'm so anxious about our own situation that this is stressful for me. Could we talk about......fill in the blank." I wonder how that would work? I tried it with my Mom, and it pretty much worked, but she's a pretty safe person to try it out on because I'm 100% sure she's on my side. I've never tried it on anyone else, and I'm not sure how well I'd take it if they got mad. Well, it's a thought.
You have all my prayers for peace and strength.
I understand how you feel. I never want anyone to go through this. But after seeing your child fight for their life, all of lifes other problems just seem like nothing. One of my daughter's tried out for cheerleader. She did not make it and was fine with it. But there were 40-50 other girls crying like life was over. I had a hard time, not saying you are healthy just be happy.
I am a 30 year old mother of a CK and have had thoughts like this as well. I completely understand how you feel!! I get tired of hearing the day to day whining of some people I know as well. I have friends that act like the world is ending because their kid has diarrhea.
But...My opinion may not be welcome or popular, but here goes. I realized it is somewhat MY problem that I feel this way. Of course those things are what bother them because that is their reality. Cancer is not. Those things got me really upset before leukemia was in the picture. And praise God that cancer is not their reality. They can't possibly relate and their view of what is important or devastating is different from ours because there life experience is different. Try not to be so hard on them or on yourself. Pray they will never know the experiences and fear that we know. The view of what is really important in life changes when something changes your life you know? Let yourself be angry at them, but try not to hold it against them in the long run.
That being said. We are all here for you and never apologize for venting here!
I totally agree with you. I try really hard not to let it bother me. And sometimes it even makes me laugh (if I'm in the right mood). But there have been a few times that I have wanted to throttle someone on the spot. I think one of the worst places is Facebook, because everyone posts the most mundane ridiculous things. One of my friends wrote the other, "worst day ever, spilled my coffee on my new shirt." It took every ounce of self control not to write back. I had to remind myself you can't take something back if it is written. It happened to be one of the first days in the hospital when we weren't sure what was going on. It was our first hospitalization since diagnosis, so it was scary for us. He was in for a 6 day stay for a neutropenic fever that he had trouble breaking. My own brother who was out of town at the time, made this comment to my mom and I am having a hard time wanting to speak to him again. He asked my mom how things were going. And she told him they were pretty terrible when he was gone. His comment was "terrible? well everythings fine now and Gavin's home so what's so terrible?" He has been back two days and yet to call. But, I try to remind myself most people haven't had to worry whether or not their child will grow up. And, the the things that seem little to us are big to them. I also have started to see that a lot of people see leukemia as a no big deal cancer. I wish they knew he reality. Most people think saying, "let me know if you need anything" is being supportive. I take comfort in the small group of amazing people who have been there every single step of the way and genuinely help and care. I hope you have at least some close family and friends who are supportive and helpful.
I know that to other people they don't understand and no one ever believes their child may not grow up but it is still hard. Yes i bite my tongue all of the time but recently I let it go and got the reaction of "HOLY COW!!"
Someone I know mentioned how the cure rates for ALL are awesome and that todays science in the medical field is wonderful. While I agreed with them about the science, I let it go on the cure rates and statistics. I was like sure everywhere you see awesome success rates and stories.... but have you ever noticed it is all of the different kinds of ALL lumped together. T Cell ALL is in that statistical number and never seperated. My daughters type of T Cell ALL was compared to a higher risk AML. Not a good feeling. Unfortunatly people only believe what they see and read, and that is not always correct.
Then another day I had someone say that leukemia is better than having a tumor somewhere and I lost it. Excuse me??? In a way, sometimes crazy way, I feel as if a tumor would be easier to deal with. they can remove a tumor. Leukemia is everywhere that blood is because it is a blood cancer. They just had no idea and it broke my heart. I try so hard not to be angy at people but when my emotions are high I really should just stay in doors and not talk to anyone. It is hard. I guess I am still angry and there is no one to angry at.
Don't be sorry about venting here. Until people are affected by something they just don't get it. Your friends are young and will accumulate life experience. We are 50 so a lot of our friends have been through health issues with their parents, their spouse, friends or child by now. I don't think people mean any harm; they just don't know any better. I have no patience for people whining about little things in life, but quite honestly I didn't have patience for that pre-cancer either! My daughter has Down syndrome, so I already experienced stupid statements out of people's mouths. Right now my pet peeve is parents moaning about empty nest syndrome. Really? I can't wait for my 16 year old daughter to get out of the house and turn human, and if my 12 year old daughter lives to be old enough to move out of the house AND is capable of living semi-independently I will be so happy for her to achieve something other people take for granted. And the whole money griping is just inevitable. Everyone's situation is different and everyone has different priorities for money. Unless you've had a major medical condition for someone close to you it is hard to comprehend how much treatment costs. I could get onto a soapbox about people thinking not everyone needs health insurance but I won't. Feel free to vent here and sending good thoughts and prayers your way.
I am sorry that you have had to deal with some insensitive folk. I haven't had to deal with too much of this, so maybe it is accurate to say that older people, whose peers are more likely to have encountered life-changing medical issues and tragedy, are less likely to say something ridiculous.
However, there is a thread for the awful things people have heard:
I'm not sure if this will help. Sometimes it is necessary to be deaf. Sometimes it is necessary to be thankful that the other person has NOT encountered an equivalent health challenge, and bless their ignorance.
You can always come here and complain, in detail. Leukemia is just not fair. You have every right to be angry and frustrated etc.
Some comment is rightly made....facebook is lousy place to go back to....One of your friend will write I am out of town and missed my anniversary........And 25 of your 80 friends will feel sorry about it.....Big deal...Here in 7 months we never found time to live a single happy moment....
Facebook gives you so much pain looking at your 80 friends complaining daily for nothing...They are enoying life....God bless them....
Sarah, I am very sorry you are having to deal with this horrible situation! But I can tell you this, age makes no difference in people saying really stupid things. It is all about life experience. That is what builds compassion and empathy. I have young friends who have said dumb things and I have "not so young" friends who have said dumb things. In the beginning it was really hard for me to deal with the comments. I would just cry and be mad. Sometimes I would say something back. But now, 3 months off treatment, I can laugh and be so thankful that my life has so much clarity now. I can see what is important to me and I can feel sorry for those that still take the little stuff so badly. I do still simpathize with any parent who has a sick child, no matter the extent, because I remember being there. I remember Austin getting fevers as a baby and feeling very scared. So I try to remember that and think that while it isn't cancer or chemo, it is a kid not feeling well. And that is never fun. So, go easy on yourself for now. Once things calm down a bit, it will get easier to laugh at. And by the way, we are the same ages, 28 and 29. Austin is 11 though. We had him in highschool!
Yeah this is a big one. I think I am more surprised by the people that don't even try to understand. It is as if they can't even bother to think how they would feel if it was their child.
The disconnected speech about ALL statistics - that one really gets me as they have no idea that the reasons these numbers have gone up is due to the current limits of toxicity being pumped into our children. Plus - numbers....really? I mean yeah I need my kid to get through so I am glad he has good "odds" but we are not rolling dice here. It is one pill, one dex pulse, one hospital stay at a time. And the heck with the numbers because I need them all to get through -- all of our children.
I originally tried to avoid responding to this because this is likely the most surprising and saddening aspect of the entire proccess for me. Josef has had 8-10 short 2-3 day stays in the hospital since induction and the lack of response from some friends and even family was stunning. Or when he is on dex and feeling miserable and people will come over and not even bother to engage him but instead wander around our house talking about nonsense - Hello, if you want to help great, if not please leave because I cannot entertain you while my kid is feeling awful. Fortunately most people do not do this and when they engage him while he is feeling bad it makes all the difference. Maybe some people think our kids get used to being sick and feeling like crap?
Sort of leaves you speechless when they tell you about a cough or sore throat a few days later - I mean what can you say. I just keep my mouth shut. Maybe this occurs partly because we always try to stay positive for Josef and the family and friends who are concerned? From my disjointed and rambling response I guess it is clear this has been a frustrating issue for us as well.
You are not alone that is for sure -
People seem to experience emotional fatigue and either don't see, or don't want to see, that we do too but we don't have a choice to disengage or not. We are pushing 3 years (Aug. 17) of treatment and we won't go OT 'till Jan. 2014 so I can only imagine how much worse our relationships with so many real world folks is going to get. Joey's been in the hospital 2 weeks tomorrow and I can count the numbers of visits we've had on 1 hand. Honestly, I'm starting to change from a highly social person to one who is either here at Children's or at home because I'm sick to death of hearing excuses about why people don't visit or even send a card. If you have time to think up an excuse, you had time to send a text message at least. I'm done with making excuses for people and looking the other way. Fortunately, we have decided to change Joey's school and the new community has already embraced him. 2 Moms brought down 5 boys yesterday to play PS3 and eat pizza. That's more than his old school community, or our neighbors, have done for him in the last 2 1/2 years.
Sarah, the "good cancer" myth continues even in the world of pediatric cancer. A leukemia diagnosis is referred to as a "blessing" on the 46Mommas page by a Mom whose child was diagnosed with neuroblastoma and later died. I have full sympathy for her loss, but I did contact them (the group contact person, not the particular Mom) and ask them to please consider changing the post as they are perpetuating a myth that certainly does not reflect our reality. I got back a very kind and sincere seeming answer assuring me that the group agreed that educating the public is one of their key goals and the post would be changed. A month later, it's still there.
good cancer. I'm not sure how anyone can even put thos two words in a sentence. it makes my head spin. How can anyone think 2-4 years of chemotherapy be "good"
I guess for the first time I'm glad to be older! At least we have friendswho have kids now, and who could try to imagine what we were going through, at least at first. The problem I think now, is that people see us out and about, and figure we're good. No worries. Right now, I'm so tired, I don't even care!
If you lived near us we could be good friends!! My husband and I are both 26, half our friends (ok more than half) don't even have kids, or are just now having new born babies, they don't understand what children mean to parents in the first place, let alone what a sick child means. I see the same things you do.. "I'm having a horrible day, no lunch break and I broke a nail" really? Or the ones who do have kids and take the time to email me after their child had a 5 hour er visit for an ear infection, because now they "get it" and when in reallity they still don't. I almost feel insulted that they even compare such expierences. But, I do realize they are trying...and I also realize I don't want them to understand, because if they did they would be in our shoes, thats the only real way to "get it"
We all just see life from a totally different perspective than everyone else now that cancers touched us. I deff think its tougher to find the empathetic support system when your young parents though. 20 somethings tend to be rather self absorbed if they haven't decided its time to grow up yet.
Sarah - You are not alone in what you are going through. Most of us have experienced it and know what you're fealing, so no need to say Sorry to us..... Yes, we get it and you have are absolutely in your righte to vent here.......Yes, you do feel cheated..... Cancer makes you feel robbed of that childhood period that others are experiencing. Even after my daughter being in OT, I still feel somewhat in the same way as you do when I see parents (including relatives) make a big deal about their kids minor illness. However, remember that you've met many friends (in virtual world definitely and hopefully in real world too) who completely get it and are always there to give you a helping hand. I am grateful that I found many such friends in this journey.
Take care and God Bless,
I have to admit I have felt that way, too. And I am always comforted and impressed by this discussion board where parents are going through similar and unique things. Everyone is supportive and respectful.
I have also been on the other end, though. Sometimes I complain about steroid week, inpatient stays, the length of treatment and late effects. But I know so many children who have passed away or who are disabled (from treatment, autism, birth defects, accidents, etc.) to the point of being completely dependent on someone for the rest of their lives and realize that I can deal with what I've got and I'm glad we have a good prognosis. Even so, I post the updates. I definitely don't want them to be offensive, though, and hope that other parents realize that. I also know it can change any minute... I still do complain once in a while about stupid things that don't deserve much attention - but mostly in a funny way! And I do feel bad when my older son gets strep or a flu - although my sympathies are often tempered by trying to keep him from spreading germs to my ck!
So, I guess it is all relative. In any case, I'm incredibly grateful for the support I get here and on sites like FB.