Mothers with school aged children
Comments
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Thanks Romansma for your post. Good advice I think.
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thanks for the feedback for camp kesem. I am sitting here drinking my stuff waiting for my port to be accessed to get my ct scan. I have not been nervous at all...until I walked in the building! Dang it! All will be well.
Star--I have not started journals yet. I keep putting it off. I really need to get it started. Especially for my 3 yr old. My 10 yr old, I wrote a lot in his baby book and a journal when her was one...blah. Makes it too real.
Love hearing from you ladies. All of your experiences and advice is so helpful.
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Thanks so much for the review of Camp Kesem. I've been looking into the one closest to us and trying to decide if it would be a good fit for my kids or not. Your experience helps!
I haven't started journals yet either, for the same reason -- it makes it too real. I've bought them and they sit on the shelf, staring me in the face each day, but I'm just not ready to do it. I just hope that I don't leave it so long that I *can't* do it...
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Romansma,
I always appreciate your words of wisdom and experience. You must have a very close and strong relationship with you son for him to be able to speak to you so frankly like that. I have tried to have these kinds of conversations with my kids (20 and 16) but they have not come to me and initiated anything as emotional as that. I think they are worried about upsetting me but I would rather they be open and frank. Thanks also for the heads up about the scene in that movie.
Hugs, Susan
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So glad I found this thread. Newly dx Stage IV and am so worried about my boys 7 & 8. When I went through this before they were 2.5 and 3.5. Too young to understand. It's diff this time. So so incredibly sad today.
V
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Well mammas, we are into our second week of school and the house seems awfully quiet. I am not used to it, and I am not as productive as when everyone is home. Even my fun projects that sounded so appealing when I bought things and planned them aren't capturing my attention. The internet is sucking up too much of my time, or the TV, or.....I seem to find many excuses.
Susan, I have been a believer in just answering their questions honestly. But my children for the most part don't talk about it (except in the two instances above, lol!) So for now that is what I am going with.
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V-worrying about our children is the one of the hardest things about this. What I have found in the almost 2 years of living with this is that kids are incredibly resilient. Once they kind of figure out what is going on, how you are doing, and how it will effect them, things can kind of run along even if you are still a jumble of emotions. It is so incredibly sad, so much so that I have a really hard time when I start thinking about it too much. The Social worker at the hospital just gave me a book about journaling with stage IV cancer. I have only begun to read it, but I think the premise is that it can be incredibly therapeutic and healing. I don't think it is for the kind of journaling one might do to leave memories behind for loved ones. So I may give it a try. I can't seem to open the journals I have bought to write in for my children, but since I can think of this as a therapeutic tool it might help. Especially since I don't really have anyone I can really pour out my feelings too. Looking at my friendships while I have a lot of friends, I don't really have one I feel like I can sit down over coffee and really have a heart to heart talk. And it would be too taxing to do with family memebers, I don't want to put that on them. So maybe my thoughts and emotions on a blank page that I can destroy later might be a good thing. Food for thought anyway.
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Star, I totally agree with what you are saying. You can PM me if you want to talk, we all need to vent sometimes. When I was first dx with IV I started thinking about what I should leave behind for my girls and a journal about my journey just didn't seem right. However, It is very therapeutic to write about what I'm going through so I started blogging. For my kids, I started a Cook Book
As they say; there's no better way to somebody's heart than through their stomach...I'm writing down my own recipes of the meals and cookies that I know they love and I'm also adding recipes from my mother and mother-in-law (whom are both already gone). As I'm writing I remember moments we have had at dinner time so I write them down too. Eventually, I'm going to go to the Snap-Fish website and have it all put into a photo book. I have not told them what I am doing so they think I'm a little weird when I take pictures of them at the dinner table and of the food we're eating but I'm certain it will be appreciated one day:) I would love to hear about other things you ladies are doing to leave something of yourself behind....Love and Blessings to all, Karin
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Awesome idea, Tilda. Thank you for sharing!
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just wanted to update re: scans--still stable! Doc even moved my scans out to 6 months! Sept 14th is my 2 yr cancerversary.
Star--I am currently sitting on my butt, watching tv, and on internet...looking at the mess of toys in front of me and a sink full of dishes...blah. I also have an unfinished bathroom upstairs that needs to be painted...no motivation...why? I have no idea.
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Good news, Kjones! Happy for you!
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Great news Kjones! The housework can wait! You need to celebrate!
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wahoo Kjones, fantastic news! Xx
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Rose- I think it's great you talked to him. My son saw that movie too, my youngest (5yr) but didn't say anything. He did ask me last night if I still had cancer. I told him my cancer was being defeated by the meds kinda like a loser in a boxing match. He said I was just pretending and cancer isn't a fighter like a boxer! So bah to me for not being literal!! lol!!
I know he worries. He is the kind of kid who laughs and hides his feelings. He doesn't like uncomfortable situations. We did talk "normal" about my situation and I hope he understands for now mommy is OK.
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As a mom to 9 year old and 18 year I have to say it is so unfair for our children to see all the crap we go through. These disease really destroys lives especially of our children to watch there mother struggle and pretend everything is ok. I just read somewhere two little girls lost there mom to this disease they must be as young as 4 and maybe 6. How screwed up is that. This little girls need there moms. Most of these children are not fine they grow up without moms with different types of issues. I am just anger right know at cancer. My whole thing my son has Mother's Day in school all kids make special things to moms and the moms come to school and and enjoy time with there kids. How will my son feel if I am not there and all the other moms are there. Who is he suppose to make a gift for if I am not there. I am sure there are other schools that do similar things. I just know it would really screw me up. I am more scared about my boys than anything else i want them to have as normal life's as possible and cancer makes it impossible. We need a cure or more and better medicine to keep us here as long as possible to get our kids to adult hood. Maybe I am just rambling but I am so tired of all this I need a Xanax.
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Stella-yes, it is so unfair to our children and all those who have lost parents. It is heartbreaking and I don't have anything to say other than I feel the same way. All I can do is try to live each day in the moment as much as possible and not look too far ahead. But I do think having a support network of family helps, I try as often as possible to remind my children how many people they have in their lives who love them. It's all just so sad, and I don't have anything to help any of us feel better.
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Good afternoon mamas, I hope you are all having a nice Fall day.
I thought I had a busy day ahead, DS had a JV football game I was excited to go to. So I went to the grocery store, put a dinner in the crock pot and planned on picking up little DS and heading out to the game. Well I got an email saying the game was cancelled! Oh well, at least we have dinner out of the way.
My middle school daughter is home with the first cold of the year. And of course MSNBC has an article about a bad respitory virus going around..........I don't need anything else to fuel the anxiety fire if you know what I mean!
I am just checking in, you all are such a good support for me. I have stopped reading most posts here or other fourms because I get too depressed. But I have children, and I don't want to let this crappy disease keep me from making the most of my time with them. That is what keeps me going. Whatever it takes! Hugs to all of you.
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Hi, ladies,
I don't post on this thread very often, but I thought I would share something with you.
I was a semi-professional genealogist years ago and still love researching ancestors, etc. Tonight I was looking for a birth certificate of some far off ancestor, and I came across a bunch of stuff I'd forgotten about. My dad's dad died of leukemia about 10 years before I was born, and I only heard great things about him from my dad. But aside from some pictures and his death certificate, he was just a name to me growing up.
But all that changed when his childhood best friend sent me some stuff a few years back. In among that stuff was a letter my grandfather wrote to him when he was 16...from France, where he had lied about his age in order to serve in WWI.
That letter is the only window into my grandfather's personality that I have. I have treasured not only the cool information he provides (he was a bugler and got regularly pelted with shoes when he played to wake everyone up!) but also it showed me what this stranger was like when he was a teenager, facing far more dangerous situations than I had ever dreamed.
My point is, for all of you who, like me, haven't started the diary/journal/scrapbook/letters for our kids, let yourselves off the hook a bit. Those of you with older kids will not forget you, and those of you with younger kids, there are plenty of things you can do that won't sound like "This is the Last Message from your dearly departed mother..." Just writing down your thoughts in general, not even about cancer, but what you think of your wacky cousin Hortense, or how much you hate pistachios, or how grateful you are that you live in a warm climate...ANYTHING will be treasured by your kids. The most fascinating details for them will be the most mundane ones. Having a child say, "Oh, THAT'S where I get that habit from!" or "I love that TV show, too!" creates a bond between you and your child that death cannot break.
Anyway, I thought I would share that. Sure, in my mind I will have written a letter for all my family members, my own eulogy, letters to people who annoyed me in life (so I'm not the most pure-hearted person all the time, so sue me), and I'll have all the important papers, passwords, etc. all nicely filed...will that actually happen? I have no idea. But I do know that my family members know how much I love them and that, while no amount of letters, videos, etc. would ever be enough for them, at least they will have an idea of who I was and what kind of person I was.
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thanks raro! That is such a neat story about your grandfather! It's true...our kids will love and cherish whatever it is we leave to them. Hugs to all you fine women!
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Wow Raro, that is so true! And it does take the pressure off. I often feel like since I have this "time" living with this illness that I need to have all the things done that you mentioned....letters written, papers, passwords etc. But my sentimental side takes over and I become an emotional mess. It is important just to be present daily, and be there for them. What gets done, gets done, and hopefully the memories made will be prominent in their minds.
Tilda-I love the cookbook idea. Even just writing down my simple recipes (like my chicken soup) might be really cool. I am the person with one million fun projects to do.........it's just the actual "doing" that I find hard to do!
Well this afternoon I have my regular monthy Dr. appt. I wonder if I will ever get to a place where I don't dread this monthly visit? It's like I wait in fear to hear what my tumor markers are, and then hopefully breathe a sigh of relief only to repeat the process a month later.
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I had been making a cook book for my kids for years, before I was diagnosed. I put in their favorite recipes. Perhaps it would be nice to add some stories about some of them. Things like "I remember when you were little and we used to make these biscuits....". I thought it would be nice to add pictures too. It's so easy to make electronic books and then you can always print more if you want. I don't want to do "when I'm gone" letters. Those are too sad for me to write and I think they would be too sad for them to read. I remember reading about someone who did a letter for every year after she died and her kids grew to dread having to open each one. I can totally understand that. My kids are 16 and 20 so I don't worry that they won't remember me. It's not so important me that I leave them a lot of stuff that they would have to worry about losing or damaging. If they can think of me when they make my biscuit recipe, that would be great!
starbrightlyshines, let us know how your appointment went.
Hugs, Susan
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Raro - loved the story about grandpa bugler being belted with shoes!
I was never a journaler and I'm terrible about organizing photos, scrapbooks, babybooks. Don't do 'em. As I slow down I hope I get better about the pics at least.
My recent progression was pretty severe but my #'s are all still pretty normal except for white counts which are low due to cumulative chemos.
I've always hoped I'd be a curve breaker and make it through college or most of college, but now I'm hoping to make it through middle school (4 yrs). High school would be awesome. I'm aiming high and living like I'll be here but I so worry about my little one. She is having some social struggles and I worry about her having someone to help her through those tough times. DH is great but this is not his strong point. I keep reminding her that having a wide circle of friends with some being the closest is a good way to be because at this age your friendships can often change and maintaining a wider social circle makes those changes easier to weather. I suspect she's trying to hard with certain kids and driving them away. I know its part of learning in life but one year after a 2 yr bestie dropped her she really had an awful year trying re-establish herself with new friends. Thank goodness for moving up to middle school which helped with meeting new folks. Her best friend for a while was a boy but she really wants a best friend whose a girl.
Sigh.
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I had a reply started and I don't know what happened but it vanished
I'll be back to redo. For some reason my family thinks they are hungry, lol!
My Dr visit was a mix. Good tumor markers, but my last PET in July has "some areas of concern" and he want to schedule another one asap. Of course he tells me not to worry! But I am feeling good, no GI problems which is where my cancer left me in such bad shape when it was diagnosed. So I won't worry.....not much as I can control anyway!
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Susan-I thought about writing letters for every birthday to come, or even for big events like graduations etc. I never thought about them dreading to open them, but now that you say that, I could see how that could really be the case. I love the idea of the cookbook because it would contain happy memories. And food can convey warm, happy feelings so recipes and photos would be great. I think concentrating on the living now and making memories is so important, and it lets me off the hook when the guilt of too many photos on the computer, and baby books unfinished, seems to taunt me! Even doing an electronic book for a school year, vacations, or holidays would be great. And I get so stuck in "it has to be perfect" or done for every year. Nonsense! They will be happy with whatever we do, or the memories they have.
Annie-How old is your daughter? I have a 6th grader, and it is a hard time for kids. But friends can be so important and I think it is great that you are talking about friendship with her now. Our school is small, and her class has a very small number of girls so a lot of the difficulty is due to that aspect. And one of her best friends at school is a boy also!
I know a woman who has had stage IV for 19 years now, and they have been good, busy years. I almost think part of what keeps her going is her zest for travel, learning, volunteering, and friends. She has been an inspiration to me, and I think if it can happen for her it can happen for us to have many good years ahead!
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I'm still here ladies, just checking in.
I went to a support group at the cancer center, I almost think it makes me feel worse though and now I am in kind of a funk. But then it doesn't take much these days, I am so up and down.
What does make you feel good? I like having my family all home in the afternoon and weekends, but then I am in often stressed and trying to keep up. But when I'm home alone I get anxious and my mind starts going over various health related scenarios so I don't really find it peaceful to be home alone.
This thread has become so quiet, I could really use some company so please feel free to chime in at any time.
I just found some chocolate covered espresso beans, I think that might be a worthy distraction
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I enjoy the evenings with my family. Some days, I sleep all afternoon so that I'll have the energy just to make it through dinner, homework and maybe a movie or game with them before bedtime. Weekends are tough. I try so hard to be "on" and with them, that usually Monday morning after they all leave finds me huddled and crying in my bed too exhausted to function at all. And if I do take a break for a nap or whatever on the weekend, then I feel guilty for not using my time to be with them.
What makes me feel good? Hearing my kids laugh. No matter how bad I think things are, I know it must be all okay when I hear my kids laughing together.
It's a little thing, but I'll take it!I hope you're enjoying your chocolate beans!
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Hi Kebab-thank you for the reply! I was feeling so alone this afternoon. After I posted on here I went to fb and it was big reality check. Two families, one that I know and one in our community had tragic things happen over the last few days. It was a reminder that we all suffer, life is full of suffering and it is just a part of being human. I may not like the suffering which has befallen me, but if it weren't cancer it could just as easily be something like that which effected those two families. (I could provide details but I think you have enough on your plate) and their lives were changed in an instant. What we deal with is longer lasting, and having children provides us with so much joy......and so much worry. So for me, that fb visit reminded me to find joy in the daily things, a cuddle from my son, laughter from my children, enjoying the sunlight on these beautiful Fall days. Living in the moment and leaving tomorrow to take care of itself. A daily struggle to live in the moment, it doesn't come natural for me! I am much more of a planner. While most people would see me as a laid back, relaxed person, I have a side of myself which is constantly planning and looking ahead. I have had to redirect it to learn to appreciate the moment instead of planning the next step.
Last school year I did a lot of sleeping during the day also. This year I have more energy, maybe from the Femara, who knows but I will take it. I agree with trying so hard to be "on" all the time. I try so hard to pretend things are as normal as possible for my children's sakes. If I nap I usually tell them I have a headache. Or I will give myself a needed break and watch Netfilx in my room afterschool while they are watching TV or doing homework. I find the weekends easier since my husband is home. But I try to maintain the normal level of activity.....which means going to kids soccer games, football games, etc. And I also end up exhausted on Mondays. Are you still doing chemo? Because the fatigue from that is so awful. Has your Dr mentioned Affinator/Aromison combo? I think my MO said that would be my next step. I have a PET scan repeat on Thursday so we will see what comes of that. I am happy on Femara, I have figured out the side effects and I really don't want to have to switch treatments. Thanks for talking to me, I needed it today
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I needed a chat today too, so how great that we found each other here!
I guess I'm lucky in that I don't have many people in my circle who are going through real tragedies like you describe. I feel the same way as you, often -- if it wasn't cancer for me, it could just as easily be something equally bad, or worse! I try my best to just be thankful for each day and live life as much as I can.
I'm currently doing carboplatin/Taxol on a 3-week cycle. The first week is brutal on me, but the 2nd 2 weeks aren't so bad. I have scans on Monday and Tuesday next week so I'll find out the week after if I'll be staying on this regimen or not. I'll keep fingers firmly crossed that your scans are good and you can stay on Femara a nice long while!
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I am constantly reminded that things could be worse because a good friend of mine's son has a rare form of bone cancer. His chemo is so strong he has to be hospitalized each time he does it. He also had to have his leg amputated from above the knee. He's only 21. It is much easier to be sick yourself than to see your child sick.
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starbrightly and Kbeb- I can feel your pain, worries, wishes, and everything else. I can relate to not wanting too much time along but then when everyone is home it's overwhelming. My boys started soccer and football. (5yrs & 7yrs) I have been up and out every day at 4 till 730-800 and it wears me out. I normally sleep all day to have the energy to keep up and be a happy mom for them. I just wanna cry right now! I am relieved that you all feel so similar to myself. I love my children. I want them to have the best of me.
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