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Posted

My heart is torn into pieces. I go out to work/class and put on a smile and laugh and I'm the same person that everybody knows me as. But I can't escape what I feel when I'm alone at home.

I just left my mother about 3 days ago, and the mother that I love is not the same.

She's going through WBR and Temodar. She's also on anti-seizure and anti-inflammatroy medication. She is in a constant state of fogginess. She sleeps every other hour of the day. Is this normal? I used to talk on the phone with my mom for hours, now it's good if she can manage 10 minutes before she falls asleep on the phone. I'm at a loss. I don't know how I would manage without her. She means everything to me. She is the one that has told me since I was a child that I could be or do anything that I wanted to be or do. Oh God, why does this happen? I just don't understand. She was doing so well, and then suddenly so awful.

She doesn't talk to me about death, but I know she thinks about it. She talks to my father, and I in turn listen to him and his feelings. It hurts so much when you see your father cry. When you see him have to go out and try to find side-by-side burial plots because that's what she has asked him to do. I tried my hardest when I was home not to break down in front of her, so most of my crying was done in the shower. I tried my hardest to help my sister plan her wedding. And it hurts when my little sister prays that my mom will live to see at least one of her children get married.

I found photos of me and my mom when I was little and I put them on my fridge. I just want to see her smiling as she was in the photos. Sometimes I feel like I'm just torturing myself. If I could take the cancer for her, I would.

I'm so sorry for the rant, but I just needed to get this out.

By the way, I'm just wondering what kind of outcome/side effects people have had with Temodar. Please let me know.

Thanks,

Minnie

Posted

i'm so sorry to hear about your mom. i read your post, and i can totally relate to some of the things you said. my mom, too, is having wbr and is on dexamethasone (a steroid). she is sleeping a lot more these days too, even though a little less than three weeks ago she was much more active. from everything i have read and heard from other's experiences, radiation can really knock you out, and the recovery process can be slow too. it's hard because it really is a day by day process. i don't know much about temodar, but you may want to do a general search on this site (it's at the upper right hand corner of the webpage), and i'm sure you can get some info from others. if it is anything like the steroid my mom's taking, i have heard that it can also make you really tired, irritable, hungry, not hungry, etc. i figure that by getting lots of rest, it can help both of our mom's right now. i know that it's really hard. and as for seeing your father cry. it only proves how much he loves her, and that bond is so special. my dad too has had his moments...if i ever had any doubt in my mind about how much he loves my mom, those moments definitely proved me wrong. how lucky are we to have parents like that though, especially after seeing so many of my friends' parents divorced? i'm sure that your mom loves you and is really grateful for all the support that you are giving her. if you need to cry, cry. if only my shower walls could talk...i know how you feel. my brother too just got recently married, so i was helping him out with all of those plans. it was such a special moment when my mom and dad walked down the aisle after the wedding...more people applauded for them than my brother and his new bride! as for being willing to take your mom's cancer...wow, i have said that to myself so many times before. but than i think about how hard that would be on my mom and dad...it's just so hard no matter what. you may want to talk to your mom's onco about how tired your mom is too. he may have something that can help her. i'm sorry that i don't have any real advice. i just wanted to let you know, minnie, that i'm right next to you with this. if you need to vent, vent. you can always pm too. i'm sure that i'll have many more moments in which i'll be venting, so we can definitely take turns! take care.

God bless,

mj

Posted

Minnie,

I'd like to offer you a bit of hope. When Steve went through WBR, he was not the same either during the treatment. Of all the horrible procedures he has endured, including chest tube, chemo and other radiation, WBR presented the biggest challenge. Recovery after it has been slow, but IT IS HAPPENING! WBR can totally knock you off your feet. Can you hook your mom up with someone who's gone through it? I introduced Steve to a man at work who went through it 3 1/2 years ago, and Steve kept mentioning him when things got rough. If you'd like Steve to offer some encouragement to your mom, just PM me.

Good luck!

Posted

The thing that popped in to my mind is that your Mom is literally fighting for her life, that has to be exhausting. She needs ever bit of strength that she can muster to fight the disease.....if that means sleeping a lot, then so be it. Savor those ten minutes and make sure you say the things to her that will bring her strength and peace....even if it's just "Mom, things are going fine for me, don't worry.".....Moms worry about us no matter what.

As for you, guess what.....life is not the same. That's okay and it's okay to let people know. The fear is the worst at night when it's quiet....I don't know a way around that....you just have to push your way through it.

As for talking about death, if your Mother is comfortable with it, try to be....read some books. I read "Dying Well" and it changed my entire perspective. It is NOT giving up to accept that death is a possibility.....it's a possibility for every one of us.

I'm sorry, Minnie.....do something nice for yourself....seriously, something stupid...buy a stuffed animal to hug at night, a decadent coffee at Starbucks, NEW SHOES....you have to take care of "little" Minnie while your Mom is sick!!

Posted

Minnie...

I have no experience with WBR or Temodar (but I do face some PCI in a couple of months). Mostly I just wanted to pop in to say, that I hope being able to express your feelings here and find support for them...will be of some help to you.

I know how hard it is to watch your mother suffer...change from the mom you've always counted on and WANT to remain the same forever. But deep in all of us, we know things cannot remain the same forever....and when our parents are taken ill...it's SO hard to watch...so devastating to have to deal with all the changes.

The one comment that MJ made that really hit home for me, is that radiation causes fatigue....and radiation to the brain, from what I understand, causes the most severe fatigue. The amount your mother is sleeping may well be how her body NEEDS to cope for a while...but once radiation is over....she should (slowly, perhaps) regain some of her energy.

I wish I could wave a magic wand for you and make it all go away. It's not easy being distant either...and believe me, I can relate. When my mother was battling colon cancer for 2+ years....I lived 3,000 miles away from her! I made nine trips out to see her in that time, and stayed for 3 months one time!!

Just keep letting your mom know what she means to you. Cherish those 10 minute talks.....and when she needs to sleep, be assured she is taking care of her body's needs by resting or sleeping. She needs to devote her energies to fighting this beast AND to helping her body recover from the effects of treatment.

I have to say...thus far, I've tolerated chemo and radiation very well...with some mild fatigue and only a wee bit of nausea. But both my sons have told me they don't want me worrying about ANYTHING but getting well. They've told me to be selfish and focus on myself! In other words, if they get a check for their birthdays, in a card....that's fine. I don't need to feel I have to go out and shop as I've done in the past. :wink:

Encourage your mom to take care of herself too. And just keep loving her, and doing what you can do to make yourself feel better too! The photos on your fridge were a great idea! I pulled out old photos of my mom as a little girl and framed them. Those made me feel better, when I couldn't be with her. Or...I found photos of the two of us together before she got sick and put those out.

This is doubly hard for you, in that you're dealing with your dad's emotions too....but it's important that he have an outlet. Perhaps, though, if you want to talk to your mom more openly about death...your dad might encourage mom to do that! Possible? I know with my mom, she sort of had her head in the sand for a while...so I had to wait her out. She finally came to realistic grips with her situation...and from that point on, we had some wonderful talks....where some of that "tough stuff" was discussed.

You might try to open a dialogue with your mom...and see if she'll pick up on your lead. If she does not...she may not quite be ready to discuss her death with her child...and you might have to wait a bit longer. But again, maybe your dad can talk to her and make her see that it's a conversation that might be beneficial to both of you.

Wishing you the best. Come here and vent any time you want...this is a great place for it. Will be keeping you and your family in my prayers...hoping things improve for your mom when treatment ends. Do keep us posted....ok?

Posted

Thanks so much for the words of encouragement.

I must say that I have not tried to get my mother to talk to me about the possibility of death. Maybe I'm the one with my head in the sand right now. I was reading a pamphlet that her onc gave me and one of the suggestions for the families of cancer patients was to treat them as normally as possible. So, that's what I try to do. Maybe that in itself is denial. I don't know.

My sister and I went to a local cancer center, not where my mother is receiving treatment, and picked up some info for cancer support groups. We gave them to her. She said thanks, but nothing else. I did notice that she had posted a few on the fridge. At least she didn't throw them all away. My father even told her that he would go with her to the one for cancer patients and their families. We'll see what happens. As much as I can feel for her, care for her, love her, I can not understand the feelings that she is feeling. I want her to be able to talk to people that do.

And yes, the feelings get worse at night. I'm single and so most of the time I'm alone at night. It is sometimes so overwhelming. My eyes are puffy this morning from crying so much last night. The things I put myself through. The thoughts that creep into my head, especially the what ifs. What if I want to share something with my mom and she's not here. What if I finally get married and she's not here. She always said she was going to dance all night at my wedding ... even if she was 90 years old. It's a running joke with her as I have broken off one engagement and have not had a serious relationship in years. I think of how she would make a wonderful grandmother and how that opportunity might not be a reality for her. I could go on and on.

I am thankful and blessed that I still have both my parents, and they are still together. That my dad loves my mom very much. I can't possibly imagine what he feels. He himself is not well, but he does whatever it takes to take her to treatment, do the grocery shopping and bills, and he even cooks for her every single day. We did have a moment of laughter when I told my dad while I was home that I didn't even know he knew how to cook! When I was a child, he never cooked. There was never meals cooked every day of the week. I told them I was jealous and just needed to move back home so I could enjoy dinner everyday. They both laughed. It was nice to see them laugh again. Don't get me wrong, our family has had it's dysfunctional moments through the years, but I can see, at least we knew we were sometimes dysfunctional. :D

Oh well, thanks again. I'll be heading home one more time before my sister's wedding. Though it will only be for a weekend. I hope to see my mother doing a little better.

I must go, and get ready for class. Thanks again for letting me vent.

Minnie

Posted

Minnie -

In the words of our dear wise Snowflake, you would probably benefit from some counseling to help you work through your feelings and fears. What you are going through is horrible, but what your Mother is going through is worse.

When my Mom's cancer came back, I was soooo overwhelmed because the prognosis wasn't very good (esp since she is a one-lunger), I cried EVERY time I took a shower. Things have calmed down and she is responding to her current treatment but I still have the fears and doubts, while my Mom is totally at peace with what the future may or may not bring. I myself will be starting counseling in the next couple of weeks. I probably needed it earlier this year but I still need to have a non-friend/non-family member to talk to - so that I don't hold back my true feelings. Paige is right, you also need to remember to take care of yourself - even if it is something small.

Best of luck to you and your Mother...it is hard to watch Mom's go through this since they have always been the comforter! If you would like to talk or just need to someone to listen to you, please feel free to pm or e-mail me.

I will thinking and praying for you and your family.

Much Love,

Amy

Posted

Minnie

I'm so sorry that you are having to deal with this! I'm sorry that any of us have to deal with it. I can relate to those hopeless and helpless feelings. My Dad has LC. It is so overwhelming at times. I wish I could magically fix this for you.........but I can't. I want to fix my Dad.......I want to cure him.........I can't. All I know to do is love him to pieces and be there for him when he needs me. I'm rambling here..........just wanted you to know that you are not alone in your feelings.

In my thoughts and prayers~~~

Angie

P.S. There is a post in the Newcomer's Forum that you might draw some srength from. It is posted at the top as a "sticky". It is "advice for the newcomer" or something like that. It was posted by Snowflake. The post was originally a response to one of my posts when I was feeling so scared and helpless. She later went back and copied and pasted her response for all the newcomers. Maybe part or all of it will help you. It certainly did me. (Love ya' for that Snowflake)

Posted

Minnie,

I lost my husband to lung cancer,

I also had cancer in 1999 and at that time

we discussed all that was needed, in case

one went before the other.

He fought all he could and WANTED to live

everyday to the fullest, without talk about

death, only told me no hospital at the end,

so he died at home with me..

Some people live for everyday, fighting all they

can, and have no time or strength for talking

about that fearful future, so a smile and a hug

are better when you run out of words.

Good luck,

J.C.

Posted

Minnie,

My heart goes out to you and your parents. I know how bad I felt when my own parents had cancer. They were both very courageous about it. Hope they can keep your Mom as comfortable as possible. Prayers for all of you!

Sharon

Posted

Hi, Minnie! My heart goes out to you. This is a very hard time, as we here all know. Don't need to apologize for expressing your feelings. It is good for you, and we understand. Keep us posted on yourself and your mom. Don

Posted

Minnie -

I wish I knew the words to "make it all better". Unfortunately I don't. I can understand everything you are feeling though as I am feeling the same right now about my Daddy. I too think about the past and the future ALOT. One thing that I believe strongly in is that when Daddy is no longer with me in the physical world he will always be with me spiritually. I believe that with every ounce of my being, so that helps me throught alittle bit. I have also been making a BIG effort to take things one day at a time. I try not to project about what could happen tomorrow - only try to concentrate on the day at hand. It makes life more manageable. You are in my prayers as is your Mom. Love, Sharon

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