melaniemom back again

[melaniem]

i changed my username to melaniem, because melaniemom was causing some confusion. my name is melanie, but that name was taken, so i put mom at the end of it but i think it implied that i was melanie's mom?.

anyway....

thanks to all who posted. i have tried other support sites for lc and have not been successful, so this morning after the kids left for school, i decided to check back here and to my surprise found 16 posts!!! tears stung my eyes. what incredible support you all are, and i've only posted once. i wrote yesterday that cancer is a scary place, it is also very lonely. i'm sure many of you can relate to this, i thought my phone would be ringing off the wall or people would come by, but that's not the case. i have stacks and stacks of get-well cards and people have said 'if you need anything let me know', but my phone is quiet. Actually i'm surprised by the people who HAVE called and more shocked by the people who have NOT. cancer brings out the best and worst in people.

Yeah, the chest tube really sucks. the dr. acted like a real jerk when i asked him about HOW they take it out. he said 'everyone is always worried about the pain, and then they always say it wasn't as bad as they thought it would be'. i don't believe him for a minute. this thing has been in now for 2 weeks and will remain for at least another week, i'm sure skin is beginning to adhere to it, common sense says it's gonna hurt like h#ll when they pull it. what i'm more worried about it is the fact that i still have an air leak, he mentioned going back in hospital to do bronchoscopy that would possibly allow him to manually fix it w/some sort of glue. wow, as if the bronchoscopy i already had wasn't enough fun, i may get to do it again. lucky me. really, i know, that's small beans compared to the surgery i just had, but still, i hate the thought of hospitals, tubes, iv's, etc. ya'll know where i'm coming from. let's just pray it heals itself this week.

my kids' ages are--17, 16, 12 and 10. the first 3 are girls and my son is our caboose. my husband and i started young, right out of high school, so people are always shocked that i have daughters their age. all i ever wanted was to be a mom, and God blessed me with 4. my kids are absolutely my life, so it was quite shock to be diagnosed w/cancer, it's my daughter's senior year-we're supposed to be out visiting colleges right now, and my next daughter turns 16 on saturday and she has to wait for a car now because of the financial strain this has put on us and she is trying so hard to be 'grown-up' about it when i know deep down she is so disappointed. she has been counting down to her birthday since 138 days ago, she writes it on her bathroom mirror and it breaks my heart. My little ones are kind-of 'at each other all the time' (more than the usual sibling bickering) and i know it's because their little lives have been turned upside-down. things feel so uneasy. I, like anyone else's Mom, am the rock in our family. everyone is struggling because mom is sick and can't do everything for everybody. it's quite an adjustment. i know many of you know exactly what i am saying and i just thank you for letting me vent. it feels good to be able to say these things to people who understand, not sympathize, but actually understand!!!!

I'll stop now, but one more question. where do i post now since i have introduced myself? do ya'll post on any particular subject more than others?

thanks, xoxoxo

[Donna G]

We would have figured it out! Thanks for telling us some more about you and the girls and the "caboose". It takes so much to run a house and raise 4 kids, yes even the oldest is still being raised. YOu must be exausted. If your friends have said "How may I help" call them , ask for dinner, rides for the kids, errands. Most people just don't know what you need. Perhaps they think you just need rest and want to leave you alone to get it. IN school they ought to teach "How to help those who are sick" or How to help those who are in overload" but since they don't , just ask. MOst of our friends would really like to do something. Let us know how you are doing. Donna G

[Ry]

Hey Melanie,

I am glad to see you back. I enjoyed reading your post. I am a mom of 3 still at home so I can relate! I also experienced what you are finding out about the people you can count on and the people you can't. It is hard to ask people for help. I really appreciated the folks that just told me what they were going to do, like what night is good to bring dinner, etc.

Hang in there. To answer your question on where to post, you can decide by the subject of the post. If you can't decide where to stick it, post in General. Glad to have you here.

Rochelle

[luvmydog2]

I'll stop now, but one more question. where do i post now since i have introduced myself? do ya'll post on any particular subject more than others?

You can post where the subject fits...example...Just For Laughs....NSCLC etc. Most post usually go under GENERAL especially if it covers a lot of subjects. Either way you are sure to get a response. Some people go into only one area but others like myself read all the posts. We also have a Chat area so feel free to chat with us. It is usually Tuesday and Friday nights but you can chat anytime you feel the need too and/or can find someone there. Again...Welcome.

[mhutch1366]

Welcome back, Melanie.

I hope we can provide some of the understanding and company you're looking for.

It does get better, at time, but it can be quite the roller coaster.

I had 8 bronchoscopies in the hospital before I got home.

I understand you not wanting to 'volunteer'.

Hang in there, and chin up! The tube will be out before you know it.

(If the doctor is kind, he'll give you a big premedication for pain before he pulls out the tube. Mine did. Nice nice guy!! )

[mhutch1366]

ooops!!

XOXOXOXOX

Prayers always

MaryAnn

[TAnn]

Melanie,

I'm so glad you found us. Welcome. Boy oh boy can I relate to so much of what you had to say. First of all, let me tell you that I had a catheter put into my pleural cavity in order to drain the pleural effusion at home. I had the tube in about 5 1/2 weeks. It was terribly painful to have put in and was terribly painful while it was in, but my doctors gave me a local anesthetic and also something to "relax" me so I actually did not feel anything when they removed the tube. I was so glad to have that darn thing out! Make sure to ask the dr. for something to relax you, it WILL help.

I know what you mean about the reaction from friends and relatives. I experienced the same thing. I was totally surprised by the people who actually did step up and offer help, comfort and support and those that did not. Like Ry said, it is so hard to have to "ask" for help. It was truly a blessing from those that said, "I'm sending over dinner tomorrow night". Not, "Let me know if I can do anything". Also, my only son was 17 when I was diagnosed. He had to go through a really tough time, and his senior year I was unable to be involved at all due to chemo. His world was totally turned upside down, I felt horrible that we couldn't do anything special for his 18th birthday, but once again I was sick from chemo.

Anyway, please know that we are here for you and glad to hear that your surgery was a success. I look forward to your updates.

TAnn

[Snowflake]

Hey, Melanie! Don't worry about not being able to do everything for everybody - you never really could, it was all smoke and mirrors. With less stress in your life you could keep all the balls in the air longer...

Just decide what's important (tears and fears) and what's not (dust and cobwebs) and go from there...

Maybe the 16 y/o can save up for a car? The college girl may be able to tag along with a friend to common schools and you could do the driving to another one to offset that need to be part of it all...

The two who are bickering...lessee, my ONE is a 12 y/o boy and I discovered today that bad hair days aren't just a female phenomenon Ahhhh...puberty. I'm guessing it may be picking up on stress in the household BUT caused by hormones, too...and a his/hers thing at that! OUCH!

Just work on "atmosphere" at your home, talk things out with the kids on their individual levels and have a family plan. If the kids divvied up some of the "Mom Chores", you'd have more time to help with homework, etc. (and conserve your energy).

It's do-able, you just need a plan!

Take care,

Becky

[Snowflake]

I HATE it when I double-post and look blonde...

[Don Wood]

Hi, Melanie! Thanks for sharing your family. My brother also married young and he and his wife had three girls and then a boy. I think you are right that the sibling thing intensifies when cancer is in the family. My "kids" are 37-44 and that dynamic has definitely intensified in our family. We have to keep reminding ourselves because what we expect is for them to understand what their mom and I are going through and to make things easier. But, that doesn't always happen, does it?

Yes, I am glad you renamed yourself because I was one who kept thinking you were Melanie's mom. Thanks for doing that clarification for us. Let us hear more. Don

[ellakc2]

Hey Melaniem,

Actually my chest tubes did not hurt coming out. Some people they do.

My dad had cancer and his were painful coming out. So I was prepared

for the worse, but my daughters(married) were more flipped out than I

was. So you never know. The kids will adjust. Kids are amasing. The

16 yr. will probably be the worse(from experience) teenagers are very

self absorbed. Take care and hang in there. Post anytime we've all been

where you are now. Hopefully it will all be up hill now.

[cindi o'h]

Hi Melanie--Momma

You sure do have your hands full...goodness.

But you know somehow everything will work out....somehow.

It always does.

Those kids are pretty lucky to have you for their mom.

Hang in there and do the best you can and that is good enough.

Glad you are here.

cindi o'h

[ellakc2]

cindio'h,

How the heck did you get through 8 wks. of radiation? I had 22 days

and it was awlful. It's been 10 months since mine and I still have pain.

Probably from scar tissue though. I also had carbopatinum/taxol and

tolerated it well. It seems alot of people due. Thank God. Take care of

yourself and good luck.

[Justakid]

Melanie-

I know what you mean, I just started with surgery on 06/01/04.

You asked about the chest tube....I didn't believe the Dr. when he said it wouldn't hurt, I knew he was lieing to me! I only had mine 4 days (but had it twice because of two sugeries), he had me lay on my opposite side and hold onto the bed rail, take a deep breath and when I started to exhale he pulled it out. In anticipation of the pain, I screamed, the Dr. almost lost it, then I said, that wasn't too bad. He laughed. You gotta keep these guys on their toes and paying attention. It felt funny but it did not hurt. Seems to me that you may have some skin growth but also seems that they would have to trim any of that away before they removed the tube.

I have a 13 and 7yr old. It is so hard, I completely understand.

What is your treatment plan? Whats next radiation and chemo?

Let me know if you want to talk!

[kimmek]

Hi Melanie

Welcome to our humble abode, this is the most uplifting place i have ever found, and although I do not post everyday, i do come and read everyday. It is the first thing I do to start my day off. It makes the days so much better.

As far as where to post, just where ever the topic most fits, I tend to use general most often as I dont really know sometimes either.

I am so glad you have found this site, and please know that now you and your family are in my prayers, and if you ever need a friend, I along with many many others are here.

God bless

Kim

[tnmynatt]

Melanie,

Welcome! I could relate to so much of what you said that it's comforting in a way. Donna is right in what she said--your phone is silent because people don't know what to do--they don't want to disturb you while you are healing, they are scared about what to say, etc. You will need to ask people specifically for what you need. That's the one thing I had to learn with my husband's illness. You have to ask. Once you ask, you will probably be overwhelmed with response. Then it may get real quiet again. So you have to ask again. It is a learning experience for everyone. But, most of your good friends and family really DO want to help.

I am praying for your lung to close up and heal up quickly. I am praying for your family to calm down and adjust. Do you have a Wellness Community in your area? It is great for patients and their families to have someone to talk to about the cancer and their feelings, etc. I highly recommend it. Take care.

[tess]

Its weird how people don't know that they need to call or come over. They don't realize how much it means to the person with cancer that other people come and see them and visit or just call and say Hi. They don't want to see it. My husband wanted friends to visit him, but a lot of them didn't come once. He had cancer for a year and still some didn't come, call or write, until after he died. What are they thinking? Some people are to self centered and don't want to deal with it I guess. Its a shame, and so sad for the person who has cancer and NEEDS other people. I wish people would get a clue........

[ellakc2]

Hi Tess,

Ditto I agree w/ you 100%. Until you get sick do you realize how

self centered people are. During my illness that was one thing that really puzzled me. People had some of the weirdess excuses of why they didn't visit. But the one I heard the most was, I didn't want to wake you. What made them think I was sleeping all the time? And for six months?? (Actually I didn't, and wished I could of.)

And you do have to ask, which is hard. I even had to ask my family for

help. Who and how did they thought things got cleaned, cooked etc. Espically directly home from surgery.(I live alone.) The maid fairy. Hopefully those same people never get sick, they will fine out there's no

no such thing as fairies.(haha)

[stand4hope]

Hi Melanie and WELCOME!

I don't remember if I said hello on your first post, but even if I did, I'll say it again. I was impressed listening to your story about your 4 beautiful children. What a blessing for you. I'm sorry you are having to deal with this horrible disease, and especially with such a big responsibility of 4 kids.

Once again, WELCOME, and please post often and let us know how you're doing.

God bless you,

Peggy

[Lisa O]

Hi Melanie,

I am so sorry to hear of all you are going through. I can really relate! I have a daughter in her senior year as well! My youngest ( puts on a very brave front... but I know she does worry at times. It has gotten better with time though and I am sure that it will in your situation also. I am always willing to "talk" and you can use the PM button at the bottom to start a more personal conversation any time you choose.

You can post in the general forum for just about any topic. Also browse the menus... we have all kinds of forums to keep you busy and sometimes to keep your mind off of cancer... like "Just for Laughs". Welcome.

[SJAS]

Hi Melanie,

That "glue" they are talking about is probably part of a procedure called pleurodesis. My husband had it and the good news is that it didn't hurt a bit and has been very successful for him. (Actually it's not a glue, but sometimes a talc which irritates the lining and causes the lung to heal and fuses the two surfaces together.) There are lots of places to post as you've seen. I tend to just get to NSCLC and General, because my time is limited, so I hope to see you there.

[KatieB]

Hi melanie,

I'm not in your shoes, but like everyone here, cancer turned our family upside-down too. There are alot of folks here who have first hand knowledge of what youre going thru and others, like me, who know how your loved ones feel right now.

I hope you stick around here. This is really a great group of folks who really really care.

Looking forward to getting to know you.

Prayers for you and your family~

[paddy]

I think I am a little late here as usual.

I know just what you mean when you say how you were shocked at those who did'nt come by or phone. This is what happened with us. There were some good friends who stayed by us, some people who ran a mile in the other direction and some who we didn't even know who have been constantly concerned and helpful. When my husband had a stroke a few weeks back, my two neighbours were here in the "flick of a lambs tail" to help and comfort us.

Paddy

[tess]

Thank Goodness for kind neighbors, there aren't too many of those around anymore. Sorry Paddy that you guys feel so alone sometimes too. People just don't realize how much a kind word or gesture can be.