Mothers with school aged children
Comments
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Thanks Patty, I think I get it now
I think I need to have my photos on the "cloud" or skydrive but I can figure that out, or find some on my computer. Hopefully I will post soon. Also, I have a thread on progression and rads, do you have any experience with radiation for progression? I have a apt in about 4 hours to discuss with my onc. My gut feeling has changed from rads only (which was my idea) to switching meds. So I am interested in hearing what he has to say.0 -
star--how was the appt?
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star - how did the appt go? What did you decide to do re: tx?
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Welcome cj - your kids are very cute!!!
Star bright - I loved your post about how you handle it all, especially being stage 4. Most of the time I'm ok but sometimes I get really discouraged. Your post came at the right time.
Patty- you are my hero! Please keep posting. I am so happy you are feeling good after all the hospital adventures.
Everybody else - warm hugs!!!!
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Thank you for asking how my appt. went. I am basically undecided, I updated my post with all the details. I have an appt with a RO to discuss radiation to the one area in the spine next week. I will ask if he feels if it something that needs to be treated or if it will help with the pain. MY MO felt we should think about switching to A/A combo since it is possible Femara is failing since the spot on my spine has been there for 7 months and is slightly larger (SUV change from2 to 3). There are no other visiable mets on the PET, but I do have pain in my spine, ribs, and lower abdomen. All places where I originally had mets so I find pain is unreliable to use as a marker for whether or not there is progression.
But I have a busy month ahead with one daughter graduating from high school, we had planned a big party and I have a lot of cleaning and yardwork to do. So we put off a decision about the med change until the end of the month. Now I am thinking I would like to enjoy the summer without worrying about new SE from a new treatment. So unless my tumor markers jump dramatically or I have a huge change in pain/symptoms, I may wait until the ends of summer before I decide on a change. The only drawback is the thought that I could be giving the cancer a chance to spread to other organs so that is still something I have to consider.
In the meantime, it is a beautiful day. I have family coming from out of town this weekend so I need to get myself organized. I also need to do some serious grocery shopping because I have really slacked off in the cooking dept the last few months. So I am going to get up and try not to think about cancer!
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Just popping in to say Happy Mother's Day weekend to all of you! What do you have planned?It is a beautiful spring day here. I was supposed to have my parents, bother and his family, sister and her family all come for the weekend. It is kind of a tradition for them all to come here. But one by one things have come up (prom, school functions, the flu) and now I am not sure if any of them are coming. It is sad, but in a way maybe it is better. I still battle with my energy levels everyday, especially if I take any pain pills because they suck any and all motivation out of me. I am just into peace and quiet lately
but I don't want to isolate myself so I try to fake feeling good and just hope it all works out. And it usually does. What is the saying "fake it till you make it". That seems to fit me right now.I am still undecided about what to do with med change and radiation. I think my pain has increased, but that might just be me acknowledging it instead of trying to pretend there was nothing there. The mind is a powerful force! (so is denial, lol!)
I hope you all have fun plans in the making!
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starrbrightlyshines, sorry to hear about your predicament with treatment and whether to change. Have you thought about adding Ibrance to Femara as sort of a middle ground?
To all on this thread, Happy Mother's Day to all you mamas! This one is extra special for me since it is my first official Mother's Day. For the last few years, I have been waiting patiently until I could celebrate this day as a mother. Now I am finally in the "club"!
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happy Mother's Day to all of you. Make memories & remember you're the best moms ever x
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have a wonderful Mother's Day!!!
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happy Mother's Day. Yet another year I get to celebrate. Hallelujah
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Happy Mothers day all!0 -
Moms, I really love the photos you post of you with your kids. It's nice to connect names with faces. You and your children are beautiful, and I don't feel as lonely, knowing there are others moms with the same fears, challenges, joys and milestones.
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Hi ladies,
I have posted a few times, but not lately. But, I read your posts all the time.
I am curious how many of you are doing videos, writing letters or something else for your kids. I have 7 & 8 yr old boys and think I need to start doing something like this while I still feel good enough to do so. But, I just can't bring myself to do it. I guess I kind of feel like doing this means I have given up. Stage IV is such a mental twisted mind game, as you all know. Anyway, I am curious about what others are doing.
Thanks for being here ladies-sorry we are all here, but at least there is a place where others understand.
V
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Iamstronger-I have bought several journals but never started them. I just can't make myself do it. Same thing with organizing old photos or finally putting together the baby and school albums. I hope to get to a point where it isn't quite so emotionally painful, and then I will be able to do it. But not right now.
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I'm with you two. I can't do it. I have organized their stuff as far as what I have kept if their drawings etc. for my son, I made a box of his father and mine's pics, letters. We are divorced so I wanted him to know about our relationship before. He was only 3 when we divorced. My mom used to work at hallmark and she gave me two of those recordable books. I've done one, but not the other. I have had two journals beside my bed for two years now...can't do it. I feel like I will know when to get my rear in gear. For now, I'll spend my time playing!
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hi Iamstronger
I like you am not ready to do videos or journals. But I have talked with a wonan who runs an agency called "Through my eyes". and she helps people make videos. She was very kind.This is something I would like to do but I known. I will need some help when it is time. The following is their web address.(thrumyeyes.org).
good luck
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Do not do this thing and not think about it at all I'm like any mother do not know the date of her death .... there are children one of their parents died, either by accident or heart disease, or suddenly and continued life .... why we needed sadness and we are alive and sorrow for our children if we die .............Excuse me for my use translation program
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I can't do it either. I keep thinking I'll be around as long as I can and then when I die my son needs to move on. I lost my father when I was 29 and it still hurts (I'm 46 now) but you learn to live with it and fill up your life with other people. That's what I would want my son to do. Move on and have other people in his life (his father, grandparents, aunts and uncles, cousins, friends) that would make him happy. And not suffer while he's looking at pictures or videos of me. What good would it do to anyone? Sorry if it sounds cynical but I'm all for minimizing suffering.
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I think some people that have very young children that will have no memories of their mother, may want to tell her child thru a video or journal about herself. Her childhood, family stories, how the parents met, about the pregnancy, birth, early memories, maybe even some hopes the mom wants to share about the future. I personally don't think doing a video etc would make it more painful or increase suffering. Death is death. It's a part of life. For me, I just want my kiddos to remember me...not that I plan on going anywhere anytime soon! To each their own.
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I just take family photos and attend events like any other mother. My aunt who was overweight refused to be in pictures for many years. That's been hard on my cousin to not have any pictures. Me, I don't care, bald, bloated, long hair, fat, skinny or covered in purple. I just participate.0 -
Thanks all! Super helpful and glad to know I'm not the only one struggling with this and organizing all my pictures-starbrightly. I was 2 years behind with my pics before my Stage IV dx. Pictures have always been a hard one for me too. Now, it is REALLY hard...
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I can't do it either. I don't want to do a card or video for every holiday because I have read often esp boys come to dread that on each holiday. But i certainly want a long letter about me and them and dh and our lives and how I love them. And prob a card for really big events. Ex hs grad, marriage , first child. Certainly want to get the photos off the computer and phones but it hurts to much. I keep thinking later when it's closer. But what happens if happens so quickly I can't. I have read that also. Hmmm denial land is not so bad.
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Iamstronger, I agree that in a sense, I feel like I am giving up if I make something now. Also, if I do last a long time, a video now may not be relevant by the time I go. At the same time, I would want to be remembered looking "healthy" if at all possible. I might scramble into gear of things take a turn.
Fujimama, I was laughing when I read your post about being in pics whether bald, bloated, etc. You will have no regrets. You rock!
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I was talking to a metastatic friend who was very upset that she lost a card written to her by her grandmother. Physical objects are so easy to lose. I don't want my kids worrying about losing some kind of object that I made for them before dying. They are pretty scatterbrained and lose things all the time (keys, wallets, etc.). I think a lot depends on how old your kids are. My kids are 21 and 17 so they don't need a card or video to remember me. I tell them all the time how much I love them and show it by my actions. That is what's most important to me. To write that down in a card would just be redundant. If I had really young kids, my attitude would be very different. I tend to agree with lbgal's approach in general that I want them to move forward in their lives and not dwell too much on the past. What's important is that they're happy, not that they think about me all the time or have some kind of a shrine to me. I feel the same way about my husband. I hope he will fall in love again and find someone to spend the rest of his life with. I don't want him pining away for me and being sad and depressed. Whenever he suggests something I don't want to do, like live on a boat, I say "You can do that with your second wife!" :-)
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SusaninSF, does you husband get upset when you joke about the second wife? I am curious because it would be easy for me to joke like that but would be hard for my husband to hear.
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He doesn't get upset. He usually laughs. I do it so often. He says he's uninterested in bothering to get married again. I hope he will meet someone else to spend the rest of his life with after I'm gone. I even have a candidate or two in mind... I have not been the best wife. Hoping he will have better luck the second time around. ;-)
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Susan-
I feel the same way! I haven't been the best wife. I have started to joke about second wife now too. I hope the next one is a little kinder to him than I have been. But he hasn't been the best husband all the time either. He's doing pretty well right now though.
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I attended an Inheritance of Hope retreat, and they created a video for me, of things I want to say to my teenage son. It was hard to get through it without crying. I'm grateful I have that. Well, I have it somewhere ... I can't even keep up with that!
I can't even back up my iPhone photos without crying with happiness and sadness at all I've done. There's just no way I could leave cards or scrapbooks for my son or anyone. At least, not now. It would not be beneficial to me, to do those things now.
On the husband front, my sweet husband and I joke in a horribly tasteless way about necrophilia and my husband keeping my dead body around for pleasure. It makes me LMAO (I'm giggling now) and keeps us sane.
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Rhonda--glad you two have a sense of humor about it. If you don't laugh, you cry!?
My son turned 11 yesterday! We had a family party for him at the river on Saturday. He had a blast! Caught some fish. It was one of my favorite days in a long time!
Then Sunday and Monday and even today he acts like a butt! Which I know he isn't. He is super sweet...so I'm hoping he's just tired and gets over it.
Love my cole man! So glad I'm here and doing well to enjoy it!
Y'all have any big plans for the summer with the kiddos?
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KJones- our son's are close in age. My oldest turned 11 in March. He's been a butt lately too. I know some of it is end of the year worries. He's my planner and is very worried about going to middle school next year. He also has been very busy. Recipe for cranky. We've got camping plans this summer. We also have major 4th of July fireworks 🎆 this year.
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