Mothers with school aged children
Comments
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Virginia, even though you wrote that post for someone else it was exactly what I, and I'm sure a lot of sisters, needed to hear. And although I now have tears running down my face, thank you!!
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I'm glad I had the words this time, Kelly. It will be your turn to be strong for me one day. That's how it seems to work here!
Virginia
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Many, many thanks Virginia for those words I needed to hear. As you said, I have been here before and I found a way to go on, and I will continue to find that way. I know you understand, that's why I came here for support. I have tried to find support in different ways, but mbc patients differ from other advanced cancer patients because often we have many treatments available to us. So we are looking at running a marathon, not a sprint. That has been hard for me. Other cancer patients have the hope that their treatment will end, we know we will always be on some type of med. The rollercoaster never stops. The anxiety might lie sleeping for a while, but every test and Dr visit or just a random thought can wake it up again. I just haven't been able to find anyone who can really relate to what it is like to have mbc and be a parent. The other mbc patients I know in real life have older children, out of the home. They can't remember the days when everyone still relied on mom to make sure dinner was on the table, or at least food in the refrig. Or try to keep track of everyone's summer activities and jobs. I want my kids to remember having a mom who was there for them, so I try to make life as normal as possible. In a way that is good, it helps keep me present in the moment. And I love that I can come here and have instant understanding. I will reread your post Virginia, thank you for your words. I feel like they came straight from your heart
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Starbright, My words did come straight from my heart. I guess it's easier to see things clearly and understand the truth when we're helping someone else. I wrote those words for you but I knew exactly what to say because I have been right where you are and those are the words I have come to understand I need to hear myself sometimes But like I said, it's easier to express them to you when trying to help you! So when I show up here one day looking for support, you'll know what to say. Sisters, in a big circle, holding each other up.
Virginia
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Virginia - well said
So my ds's have divided to go to church camp for the first time and I decided to let them. My oldest ds left this am and will be back Friday. We have never ever been apart that long. He has been having a very hard time dealing with cancer and seeing me in so much pain. He had been nearly impossible to pry him from my side. He has missed a lot of fun activities because he is scared to leave me. He is very shy also. So I am hoping he will get there, get relaxed and have a blast. It's time he focuses on having fun, laughing and smiling. He has put ona brave face about going but as the departure date grew closer his fear has started to show. Dh and I have pushed him to go anyway. Dh took him to church this am for departure. I was afraid if I went I would cry and then ds would cry and want to stay home - I probably would have let him.
Youngest ds goes next week but he is very outgoing. Not worried about him at all.
It is hard for all parents to let go I'm sure. Any suggestions? An adult we know well from church will be at camp all week and he said ds can call us in his cell phone or we can call him anytime we want. They just left 2 hours ago and are not even at camp yet but I am struggling not to call and check on him. Trying not to call at all and just let him call us if necessary. I did write a note encouraging him and put in in his backpack to be found later and also got him a new friendship like bracelet so he can have a little reminder of home.
I guess that is enough rambling. Time to cut the apron strings - I guess :-(.
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Patty-my 14 yo ds left yesterday for church camp. He has never gone before and I was worried about him too. He has never been gone longer than an overnight trip, and this camp is several hours away. But he is going with 2 friends, and he was excited to go. I haven't discussed my recent issue with Femara which may be failing. All he know is that I take meds, and I go to the Dr once a month. And he doesn't ask questions so I leave it at that. It is hard to let them go, but I think the experience is so good for them provided they are ready for it (or think they are).But just not having his presence in the house is noticeable, I miss him already. I think it's hard for most parents to let go, and since we have cancer that is always another layer of emotion we have to deal with.
I hope our son's are both having a great week, and I hope you will feel better about it as time goes on.
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PP & WW,
Letting our kids take off for camp was always difficult for me. I think I cried from missing them more than the other way round. My youngest ds (16 now) never wanted to go. He agreed to go one year, had a blast, didn't want to go again. I think letters are the answer. I wouldn't encourage phone calls...hearing a voice, particularly a crying one, just makes it too difficult. Cheerful letters from home help so much. My daughter has been a Camp Counselor for 5+ years. She always said that the cheerful letters which said "I can't wait to see you and hear all the fun things you are doing & learning!" were perfect.
We have five kids, ranging from 27-16. Since my dx I have found, over & over, that they need a kind of permission to live their lives and have fun even in the midst of Stage IV. One way to give them permission is to model that behavior yourselves. Mention in a letter that you took the chance of an empty nest to go see a movie that they wouldn't have liked or something. Or maybe even help them be glad they are away by telling them how much Dad misses them doing their chores!
As hard as it is to believe, you will make it through these weeks. Having them home, scratched, sunburned and bug-bitten will come faster than you know!!
Giving you a squeeze of support!
Virginia
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sweet thanks ladies. I am doing much better today lol. Back to extremely happy he is having a blast and getting away from this cancer crap for awhile. An adult staff person from our church texted me pics last night showing how much fun they were having. Yea !!!! Hoping your ds is having fun as well, star.
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what fun stuff are you ladies doing with your kiddos this summer? This must be my year of free vacations...so I'm taking full advantage of it! We will be going to Kure beach (nc) for a week with my husbands family and then the next day we will drive down to Hilton head (sc) for a week with my family! I have had increasing back pain for the last 3 weeks, so I have increased my pain meds. I have felt great otherwise. I'm hoping I can keep it up through vacation!!! I have an MRI tomorrow to check out the back pain...I'm sure it's nothing and they will have no answers. Oh well.
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Kjones, we'll be thinking of you as you get ready for the MRI. "Nothing" is relative for us! I have found that being stingy with pain meds while on a long car ride doesn't help at all (unless you're driving!). Go easy on yourself! Then soak up all the calm & blessings the ocean has to offer! The heat from the sun, the sound of the surf, the smell of sun screen, salt air & sweaty kids!! Such a healing place, the beach! I hope being with your family is a good thing! Let us know how the MRI goes.
Virginia
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@Kjones - Heading to Hilton Head with my family tomorrow....YAY! So looking forward to the sun, sand and surf! Glad that Hurricane/Tropical Storm Arthur has made his way through. Love and blessings to all of you and your families! Happy 4th!
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have fun!!! So glad Arthur will not be a factor! Tell hhi I'll be there soon
oh and my friend gave me a few recommendations for places to eat...let me see if I can find them.0 -
The Old Oyster Factory is our all time favorite. Crazy Crab in Harbor Town is good as well as Chart (Quarter Deck) House at the lighthouse.
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Kjones, I just wanted to check in and see how the MRI went. I'm always so anxious around my regular test times! I hope it went well for you and that, as you hoped, it was all "nothing!"
Hope you're having a Happy 🇺🇸4th complete with 💥fireworks❗️
Virginia
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no news yet. Thanks for checking on me! Fireworks were so awesome...our neighborhood put on their own show in our park. Pretty neat sitting in our driveway with friends watching the show. I'll let y'all know when I hear something. My onc did increase my pain meds so that was nice. Loves!
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Virginia,
I loved your advice and fully concur with everything you wrote. I never lied to my boys, but they don't need the uglies yet that is for sure.
Living in the moment and enjoying every sporting event they are in, or school event, or family event is truly the gift we can give our families. I try not to attend events thinking, what if this is my last. Because it serves no one.
Hang in there ladies, we must live in the moment for our children....make the best memories while we are with them. Isn't that how all parents should live?
Janis
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Virginia,
I loved your advice and fully concur with everything you wrote. I never lied to my boys, but they don't need the uglies yet that is for sure.
Living in the moment and enjoying every sporting event they are in, or school event, or family event is truly the gift we can give our families. I try not to attend events thinking, what if this is my last. Because it serves no one.
Hang in there ladies, we must live in the moment for our children....make the best memories while we are with them. Isn't that how all parents should live?
Janis
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This is such a great thread. Wanted to share our seven and half years of living with cancer. I agree with we have the here and now and that is what is most important.
My kids today. Grateful for every day with them.
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My kids when I was first diagnosed.
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My oncologist just texted me. One of my tumor markers is up. Scans were already set for a few weeks from now. I can hardly look at my kids. So scared. I know if I have to change meds there are more out there. It is just the thought of having to cross one of my list makes me feel like one of my 9 lives is used up so to speak. Hoping for the best but obviously seeing the worst. Ugh
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leftfoodforward, don't worry about tumor markers. They don't always tell the whole story. The scans give the best picture and even that isn't perfect. Focus on you, now and how you feel today.
I hope everyone is having a great summer with your kids.
Kjones I hope you took lots of driving breaks on your vacay so you could stretch and move about. I sat in a car for 5 hours on the way to the beach (Hurricane Arthur made it impossible to stop) and was so sore the next day!
My 16-year-old brought up a F math grade in school to a B, and finished his Soph year with a 3.0 average. He passed his driving test & got his license, and got a job at a local grocery store, all in a week's time. He starts tomorrow. And Aug 1 we are moving to a townhouse much closer to his school and his friends. The landlord is even allowing my son to choose his own paint color for his room. I realize my son is growing up, and our time together hanging out will be reduced as he becomes more involved with work and socializing. I'm thankful for every moment I have with him.
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Kjones-I hope you are having a great time on your vacations! There is nothing like the ocean, sand and sun to make us live in the moment! I hope your MRI went well also It is really hard to from test result to test result. The waiting can be so wearing on us, I still don't know how one lives like this, but I guess we just get by moment to moment.
leftfoot-my markers were up at my last visit so I have a PET scan scheduled for later this week. I have been feeling well on Femara so I am going to be really upset if I have to change meds. I think my Dr mentioned the A/A combo and even though I haven't looked up the side effects, I know from what some people have posted and a friend has mentioned, that the side effects are much more debilitating than what I have. Once I found Lyrica helped with the joint pain, I have been doing really well for the past few months. Unfortunately, this cancer is in my GI tract and bones, so it could be flaring up again and I may not feel it yet. I have a new computer and I have no idea why it changed fonts. I feel so old when I can't keep track of new technology!
Tara-I think it just changes as they get older. They kind of flow in and out of the house like the tide! And somehow if you are available to listen when they actually feel like talking, it is possible to still have a close relationship!
I am trying to be calm about the PET scan, but I feel like am quickly running out of treatment options. I could use some good thoughts and prayers sent my way,
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you got it star!
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praying for you star
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Praying, too, star--let us know how it goes!
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STARBRIGHT you are not quickly running out of treatment options. Many more to try. You can look around here and easily find women who has NO luck with several treatments but are now doing well. There's one for you out there.
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I had decided not to tell my kids who were 19,17 and 15 that I was stage 4 until I got a better handle on it myself. I thought I'd wait a month or two and see how I responded to Xeloda. Unfortunately I had an extreme reaction to it and was hospitalised not expected to last the week, I was paralysed and couldn't speak. Someone else had to do the "talk" and they were all in shock when they were brought to see me for what they thought was the last time.
Although the story had a happy ending I have always felt bad that I hadn't better prepared them before hand.
This is my daughter. 16 years old and my rock.
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shazakelly, your daughter is beautiful. We all have all kind of secrets it's more to protect them. I am 2 years into my disease and my kids only know what they need to know. I want them to have normal childhoods I don't want to take it away from them. When time comes and I know it's time I will prepare them. I would not be able to live with myself if my kids constantly worried about me.
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I need to vent a little. Sorry, it is a stressful month for me.
This is my month of various tests. So far I have had a swallow test which resulted in a need for an upper endoscopy. Evidently the Xeloda I have been on has caused so much reflux and heart burn that I now have scar tissure in my esophogas which is causing trouble swollowng. While I am having the upper GI checked they are going to do my lower GI as well. Two procedures in one day. fun times.
I also have my brain MRI to check for more brain mets or to ensure that I have no new ones.
I also have my CT of my chest and abdomen.
I think that is it. I will be glowing by the time I am done with all of these.
Oh and I had blood drawn for genetic testing.
and My tumor markers were up with my routine eveyr 3 week blood draw.
Doing all of this while taking care of my 4 kids all day has been a bit challenging. I am fearful of what these scans will reveal as the tumor marker is up. Really hoping I don't have to have another chat with my kids about my cancer. I have been stable for 18 months and am very hopeful that I continue to be stable.
I apprecaite the outlet, as I know you understand the stress that I am under.
I love all the photos of your children and stories of their lives. Keep sharing.
This is me and my bunch on the gondal in Cairns Australia
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leftfoot,
Beautiful kids! Thanks so much for sharing. So sorry to hear about all of the procedures. I had an eye procedure yesterday and can't go outside for 48 hours. To the doctors, things like that are an afterthought. Each time I've had an eye procedure I've asked them, what's the downside? They always say there isn't really any but each time I am out of commission for several days which is a big deal to me. Sitting in the house all day really effects my health and my mood. Anything involving an IV really gets me down because I hate IVs. Getting blood drawn, each of these things while not huge as a stand alone procedure really weigh on us in total. Guess there's not much we can do but tolerate it but some doctors need a lesson on what it's like to walk a mile in our shoes.
Hugs, Susan
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susaninSF/
Thank you. I hope you have an uncomplicated recovery from your latest eye surgery.
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