Mothers with school aged children
Comments
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Left foot- totally get that we hate that cancer is ever present in our kids lives. My sons teacher just found out he needs back surgery for a compressed disc. My son pipes up and tells him about my titanium vertebra. His teacher told him I am one tough woman. Funny how our kids see this stuff. I will be thinking of you from this corner. Have a safe surgery.0 -
leftfoot--augh! Freaking frackin stupid cancer! I am so sorry (and mad) about your progression! Hopefully removing that original tumor does the trick. Glad it won't get you, but that doesn't make it any easier. I think you are right by going to the people in the school. They spend more time with the kids during the week than parents do. They will keep a look out and probably give some extra special hugs. I do a lot of faking things around my kids. The things we do to try to keep their world as normal as possible. Sending lots of love, hugs, and healing vibes your way.
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dear leftfootim so sorry you are going thru this .I will keep you in my prayers . and thoughts
love chris
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Leftfoot, you are in my thoughts.
I just returned from a vacation with my kids in Mexico. It rained and the food was bad. BUT, it was awesome. 4 days of uninterrupted time to spend reconnecting and making memories. No electronics to distract, no friends to trump time with mom. We talked, played cards, laughed, ate, drank, and it was perfect. I purposefully scheduled this trip without my husband too. When we are together it tends to be us and them and a different dynamic. If you haven't done anything like this, I highly recommend!
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leftfoot, I am so sorry that you and your family are having to go through this.
There are times when all this cancer rubbish is so surreal . It's like this can't possibly be happening to me. Then I realise that it's happening to my loved ones too. It's happening to my 12 year old . In the beginning when I was just dx with Stage 4 , I thought of writing letters to my family, especially my son. Then I decided that I will not reach from beyond the grave and upset him every significant birthday or occasion (just my opinion) I will spend as much time and make as many wonderful memories as possible. Besides , for me it's kinda like giving up and that scares me.
Hang in there and make sure you rest and get your strength back. I'll be thinking about you .
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Hi All!
I just hopped on this thread. What beautiful children! And families. I've read through the posts and was wondering how everyone is doing? I'm here with my little one who is running a fever and has a nasty sore throat and cough. Hate that we can't snuggle!! And my 19 yr. old will be home soon to help take care of things. Have a blessed day!
~Mtmom
(8, 16, 19, 29 year olds...love them all!)
Edit: Okay, I feel stupid...and a fine example of chemo brain...I thought there was only one page on this thread! Read that and wondered how everyone was doing. Duh! Okay, I've found all the pages and am catching up right now. So sorry!!
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Well I have the "worst" mom of the year award. I forgot to pick my my dd 12 at bb practice tonight. To be fair to me, I had assigned this responsibility to my oldest dd. Well oldest dd has been late twice, which made dd 12 mad. And oldest daughter just got a job so I didn't even think about her not being able to pick up dd 12 anymore. Sigh, and it is only the 2nd week of bb! So lots of tears, stomping feet and yes, she has a reason to be mad but not disrespectful. Unfortunately she is one who does not get over things quickly, and can hold a "mad" for a long time. (Gee, I wonder where she gets that) lol!
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we have all been there starbrightlyshines. I actually got my 12 year old a phone so that he can text or phone me when something gets screwed up. I have to rely on lots of others for help these days and this makes me feel better. never thought I woudl get him a phone so fast but find that my peace of mind is so much better now.
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just in case some of you missed it on the main stage 4 page, our annie62 is in hospice. Let's give that momma some love and support!
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I read Annie62 post I am beside myself so upset about that. I hate this disease so much it destroys lives and when little kids are involved it is more complicated. When I read her post I have not stopped crying. So sad...
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Hi there mamas. I just made a new post about children heading off to college so if any of you have some advice or sympathy or whoops of cheer (lol not me) to add I would love to hear it!
We are deep in the middle of the school crud. Everyone has been sick except dh, which is a blessing because otherwise I don't think we would have survived. My ds 15yo has been on three rounds of antibiotics and is finally well. Being a teenage boy, not much slowed him down. On the other hand, dd 12yo doesn't really like school and has missed 2 weeks due to a viral cough/cold (probably the same) and just went back to school yesterday. Last night she started vomiting and is now home sick again. My ds 7 yo is still home sick with the cough/cold. Thank goodness it is a small school, and we are up to date on homework. The school said many kids are sick, I am not really worried about the school part, I just feel like we are never going to get well.
I finally made an apt with my dentist last week for a tooth that has been bothering me off and on for a long time. It was never really bad so as you all know, it's easy to put off something like that when we all have monthly onc visits, scans etc. Well I ended up needing a root canal, and while I was there they redid an old one that bothered me. This was all last week. I thought I was doing pretty good but it really knocked me on my butt for the next few days.
My emotions are so up and down. I haven't been able to go to yoga since the kids have been sick, so my back has really been bothering me. Of course there is an area in my back that my onc is watching for whenever my back hurts my mind goes into worry mode. It is a subconscious thing, sometimes I don't even realize it until I notice how anxious I am. I did get to go for a massage which helped tremendously. And he thought it was a muscle thing not coming from my spine. We can hope.
So I am spilling it all to you wonderful ladies, because while I do have friends in real life, I don't have anyone to talk to like this that would really get it. A few weeks ago, I pulled out all my pictures to organize since my dd 18yo is graduating this year. And then I got sick. So there is a huge mess in our downstairs family room that confronts me each time I walk into it. I am tempted to shove it all back into boxes. I literally cannot make myself sit down and do it.
I hope you are all well surviving winter. It is sunny here today so I keep reminding myself we will get through this and hopefully have better days ahead.
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starbrightlyshines- I love Walla Walla. Love the little bakery downtown. It snowed in Spokane valley today. March is such a weird month.0 -
I'm a single mom of a 5 year old daughter & my biggest fear is missing out on her life & she is my greatest motivation to get to NED. It is so hard trying to explain things to her without frightening her. Life has changed dramatically in 3 months - my mom has moved in with us to help out (a good thing) & my hair has fallen out, I have very little energy for outdoor play, the topic of siblings came up & I had to explain that I wont be able to have any more children (hormone treatment plan is at least 5 years at the moment & I don't intend to start trying for No. 2 at age 48!). Thankfully I am surrounded by the most wonderful friends & family who entertain & distract her & her school has been so supportive.
I'm keeping a diary & she will have that to read one day, but I'm far too positive about my prognosis now to start writing letters to her. The only way I know to keep any fear out of her mind is to keep it out of my mind.
Here's wishing us all many many more years with our precious children.
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Karz- sounds like you have a great support system. I'm hitting my fourth cancerversary. Its very doable. My oldest had just turned 7 at my diagnosis. Next week he turns 11. Our kids learn coping strategies that will benefit them for a lifetime. Nice to meet you.0 -
thanks Fujimama, good to meet you too :-)
So glad to have found this community & expand my support.
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Fujimama-Are you talking about Merchants? I am trying to think of which bakery it could be. Oh, it must be Walla Walla bread Co. They are good. We used to love to go to Merchants but they closed several years ago. Its nice to know you are four years out. I am a little over 2 but I still feel like most days are a struggle. And any extra little thing depletes my energy and pushes me over the edge emotionally. I am not dealing well with this winter, colds, flu, children graduating from college....:) I do hope they learn extra coping skills like you mentioned. Most of the time I feel like they are getting ripped off.Karz-the diary is a beautiful idea. I have bought several journals, but I never managed to get them started. It is so nice your mother was able to move in with you. My mother stayed with us for several months when I was first diagnosed and really helped all of us. I think it gave the kids a sense of consistency.
Hoping you all have a day full of sunshine like we have here.
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welcome all. This thread kinda fizzled but would love to have urging strong again.
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How are you feeling Patty?
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oh no it was merchants. I had no idea they closed. We haven't been down there much since we moved to Spokane.0 -
My mom has been here for the past 10 weeks helping out but her trip home (2 hours flight) has been booked for the end of the month after we see how I respond to Taxol. Onc has promised it will be easier to cope with than the cytoxan & ellence. Dreading it though, even with her help I have to make such an effort to have the energy for my little girl.
I can see I'm going to have to manage my evenings a lot better & make sure school & work lunches & bags are packed else we'll never get out the house in time! I just seem to move so much more slowly.
My little girl is wonderful & such a help when I need her to be, but it does make me angry - its not fair that a 5 year old should have to make allowances for a mom who can't do what she should be able to.
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Romansma - feeling a little stronger today. My legs seem to be able to carry me without help. Set upright most all day yesterday but way early to bed. Sitting up this morning got a couple hours. It will get better.
How are you feeling ?
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Happy to hear you are getting stronger. I'm having an off day with side effects today. Not sure if it's the Ibrance, new pain meds, or maybe I'm just sick. I think I've been over doing it and need to rest more. So hars, too many things I want to do.
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welcome Karz and mommaray. Sorry you are here, but hoping we can all stick together and offer support.
I recently have had really bad fatigue. My almost 4 yr old said--mommy can you play with me today or do you need to rest? Breaks my heart.
She will be 4 next Friday--first day of spring!! So excited! I truly believe with my whole heart that God gave me Cora to help me through the bad times. She brings me so much joy and laughter! She is hilarious! The bad thing is she knows she's funny...so we are working on not laughing at her all the time.
My son will be 11 in may. He just finished youth league basketball. For the first time ever his team was undefeated! He was so proud. And I think he is finally starting to understand the game. I am going to be his coach next year. I might as well. And then I won't have to bite my lip at all the stupid things his coach says and does! They got lucky and had very good players on their team. I do keep my mouth shut in front of my son because I don't want to undermine authority. Cole is a different kid. He can be shy and quiet which can come across as rude. He has come a long way! He is the brains of the family. Seriously has an iq about 15 points higher than mine. What I'm most impressed with is how he keeps up with everything going between 3 houses--mine, his dad's, and grandparents. He keeps up with all his school work, organized! I hope that continues. He has all a's at this midterm. He is so sweet. He's my cuddle buddy! And for the most part he is super sweet to his sister!
I'm also planning a little surprise party for my hubby...turning the big 40! I hope it all comes together.
You all have such a special place in my heart. Prayers to you and yours!
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Kjones I understand so well - I feel so guilty about being too tired to play but by the end of the day I sometimes just want to curl up & cry I'm so exhausted. So difficult to find a balance.
The beautiful soul of my daughter lights up my life though, can't imagine living without her or being gone from her life. Trying to appreciate every moment while maintaining as normal a life for her as possible.
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Hello ladies
I'm new on this thread but have been reading here now and then. I landed here now because I was looking for fatigue handling. I have a 7 yo and I'm sop tire call the time. Poor little guy he already learned I'm too tired to play so he doesn't even ask anymore. He just comes and hangs out in bed with me when he plays on the iPad. Breaks my heart. How do you all handle it?
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hey lbgal--sorry you are here. I don't have any good answers about fatigue. It's my biggest struggle. I am going to see a psychiatric np to have a med eval and see if my depression meds can be increased but also I am going to ask about Ritalin. I have heard of cancer patients using it for more energy. I need it!!
Another thought that crossed my mind when reading your post--I think back to my childhood, which was near perfection, and my parents really didn't play with me very much. And that didn't seem weird to me at the time. They were/are great parents. But nowadays, parents seem to always play with their kids. I do or did or I try to. But I also think it's ok for them to play by themselves. IMO. I just get a weird feeling about all the pressure there seems to be around this issue. I think doing something special every now and then is more meaningful. My favorite times with my kids are when we are laying in bed talking and cuddling and reading books. That is when I feel closest to them.
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Ibgal- I'm sorry you had join us, but glad you found us. I'm on Ritalin and that helps me. I also have a 7yo. I also have a 10 and 4. They are used to my low energy. I try to schedule things according to my energy patterns. When my energy is good in the morning I volunteer at the school. I've recently started the older two on horse lessons. I go and watch and they have a great time. I do lessons at a different time so I can be there for them. My little guy does lots of pad time on my bed on bad days. It is what it is.0 -
lbgal-fatigue is probably one of my biggest problem as well. I just don't have the energy to keep up with things. I have a 7 yo son, he was 4 when I was diagnosed. He has learned that I just can't do things with him anymore, like skiing or even jumping on his new trampoline. It makes me nervous because I had so many bone mets that I am careful about what I do. He doesn't ask me to play much anymore, but like you, he comes up to my room and hangs out playing or watching Netflix on my tablet. He probably watches way too much TV, but having older siblings and not having other kids around to play with there isn't much to do. He has gotten used to having days where I am up and around, and days when I am in bed. It isn't the way I would like it to be, but I guess we just make the best of what we are given. The important thing is that we are here, we are involved in their lives, and they know they are loved. I remind myself of this all the time and that is how I get through it.
Kjones-I have tried Ritalin. I asked for it because I had a couple of times driving long distances where I was so tired I thought I wouldn't make it home. But for me it produces instant anxiety so I haven't used it much because I battle anxiety anyway. But I did take a half a pill last weekend and tolerated it ok so I might try it again sometime. I agree with what you said about playing with our children, looking back my parents never played with us either so that does make me feel better! I do think there is so much pressure on parents, so many of my children's friends are involved in activity after activity. I have already had to say no to my 7 yo on a few things because I have to pace myself. And having older siblings, we are busy enough with their sports. But he did soccer and bb this year, so it's not really like he is missing out. I love our cuddle time, whether it is on the couch or in my bed. I just love the fact that he is happy with life, and doesn't think about cancer or worry about it as much as my older children do. Good luck with the surprise party, what a great idea!
Fujimama-I also try to schedule around my energy, or rather try to schedule my energy around their activities, lol! So morning I try to rest because once school is out it's dinner, homework, etc. Even so, evenings are hard, even when I haven't done much during the day. My goal is to make life as normal as possible, for as long as possible. But like my daughter's teacher told me "there is no such thing as a normal family", so I try to not feel guilty. I try to volunteer at school and drive on field trips. I used to be the parent that was always there. Now I just do it as much as possible and tell myself they will just remember that I was there, not how often.
Katz-I can tell how much your daughter means to you, it's more important that we are there than it is what we do.
This winter has been hard on us. The kids have been sick and we seem to just be passing things back and forth between us so someone is always sick. There has been a lot of tension in the house, my oldest daughter is home from college with mono/lyme disease and is taking some time off. We keep getting passed off from dr to dr and no real answers. My 18 yo is looking at colleges, and none are close to home. I keep getting colds and they knock me out, the stress doesn't help and I know it's not good for my body to be so stressed. I haven't been able to go to yoga like usual, so my joints seem to ache more than usual which just puts my mind into the "it must be cancer" mode. Its just been harder than usual, and I am feeling trapped. I've tried to reach out to a couple of people that know what my family is going through but they don't really get it I guess because I am not getting much response. Being told I am "inspirational" isn't going to help me when I feel like I can't handle anything else. But asking me out for coffee or even a follow up call or text would really help. I think we just live in a world where most people are so busy that they can't see much outside of their own lives.
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Starbrightlyshines you're right - cuddle time is the best & doesn't require much energy :-) Getting lots of reading done with my little one.
Good luck with your teens!
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Happy Dance. Scans this week showed reduction in all tumors. I had five measurable BC tumors in my lungs and my right lung had ground glass. Now only three measurable tumors all half the size and no ground glass. Kadcyla is working. Liver isn't happy, but isn't getting worse. I'll take it.0
