Coping

Hi,

My brother who is 42 was diagnosed with Stage 4 Lung cancer. I think he is doing better than the doctors expect. But I can't get them to give me time frames. Right now he has to get shots because his platlet level is low. Is That common - or is it a sign that things are getting worse. He had some cancer cells in the brain and they said that they had shrunk "big time" my brother is excited about that. The doctor said that he had a mass on his adrenal gland, the PA said it was on his kidney. NOthing has been said about how bad this is - it may be being contained and maybe not. I just wish I had more definitive answers.

I'm worried cause I let my brother move in with me and my daughter, we were the only ones with a house big enough. My daughter is 16 and I'm worried about all the stress this is giving her.

I don't know what to do to help her cope. She wouldn't want to go to a support group even if we had one in our town. And I don't think we do.

Any suggestions?

Grace

Grace, First let me say what a great thing you are doing letting your brother live with you as your support and love will help him cope with this awful disease. Yes it will be difficult on you and your daughter so make sure she is out having fun with her friends and doing things 16 yr old girls like to do so that she can live as normal of a life as possible that goes for you too as a caregiver you need to include some "ME TIME" for yourself. The life lessons one learns from this experience are not all bad. I take it your brother is on chemo right now? With Chemo it is normal for platlets to drop as well as WBC's and they have to get them back up in order for the next chemo to be given on time. They can not really give you time frames as cancer varies so much with each person so learn to appreciate each day as it happens.Chemo can be difficult so just let your brother know how much you love him and that you are there for him. My 81 yr old mom is a 1 year survivor of NSCLC stage IV and after chemo went on Tarceva and has had a great past 7 months even going back to work 2 days a week! If you did not know her and the short hair did not make you think Chemo patient you would not have known she is even sick right now. She has had some growth in a few liver mets on a May CT and CEA went from 20 in May to 70 in June so tomorrow she goes for a CT to see what and if anything is growing right now if it is the fight will take a new turn. I live 120 miles away but because I work 3-12 hour shifts a week and have been doing it on weekends I spent the weekdays at her house when she was on Chemo and do not regret a moment of it. When she stared felling better I started going less often as I know she does not want to feel that I am giving up my life for her so this way she feels that she is not a burden . If she goes back on Chemo I will be there but will also be thankful for the wondeful 7 months the tarceva has given us and the break it has given me . I did not get to the point where I resented being a caregiver. Hang in there and I hope your brother has the same attitude as my 81 yr old mom who says she is not going to let the cancer win without a fight! My thoughts and prayers go out to you, your daughter and you brother. You are a good sister. JanMarie

Grace,
i think you should advise your daughter to
1. Enjoy life as a 16 yr old like the previous email said. Our councillors advised us to carry on our lives as normal as possible. I went to work every day, and only took off time to take my mom to hospital. The councillors say that the living mustn't stop living. Your brother will feel guilty if he takes away any of your daughter's teenage years. Furthermore, your daughter must also not feel guilty for living because death is a part of life.
2. Your daughter mustn't stress about her uncle. Most cancer patients become stronger in spirit and I am sure your brother wouldn't want to feel a burden.
3. Your daughter must use this time create good memories with her uncle. Uncle's are great, especially your brother who is only 42, because they are normally the best family members to relate to teenagers.
4. If you sent your brother elsewhere, wouldn't you always regret "not offering the best you can do for him", and this may lead to resentment against your daughter because she was too "selfish" to allow you to care for your brother. YOur daughter needs to understand the caring of your brother is something you want to do, something that is very important to you.
5. Here are the words that I asked the minister read at my mom's funeral. Words that you may adapt when you think of your brother:

You were never a burden, only a privilege.
A privilege that allowed me to return the love and caring with which you raised me.
A privilege to ensure that you were granted your wish of being able to die without pain, at home and not alone.
A privilege to say each day, I love You.
A privilege to be able to say Good Bye.
A privilege to call you my Mother.
Grace, God Bless
Alison

I am new to the site as of yesterday and tonightI was reading so many messages from different readers. I am the care giver for my 70 year old mother, who in May '05 was diagnosed with NSCLC stage IV and was only able to have 3 rounds of chemo, due to the fact that her white count would always drop when it was time for her next treatment. She still wasn't feeling better so after her 3rd treatment, her dr started her on Traceva on July 05. Did your mother ever have problems with a productive cough? Mom had to stop the drug for two days and then get back on it as well as taking a different inhaler. I been reading differt message but no one every mentions having such a bad cough.

I sure hope we have good luck on this drug, if we can get the cough under control she can live a normal life, but it really wears her down.

Thanks

Kathy

Kathy, Sorry to hear that your mom is having problems with a productive cough. My mom did not have problems with a cough while on Tarceva. The only time she had a bad cough and it was non productive was when she had pleural effussions and with the 3rd one of those they did a pleurodesis and that fixed that problem. Does your mom have lung disease such as COPD or asthma? My mom does not but I know people that did as well as having cancer and they did cough alot.The only side effect my mom had with the Tarceva was the rash and even it was tolerable and she just looked like she had acne, while others claimed the rash was very itchy. People respond to the drugs in so many different ways. My mom did stop taking the Tarceva after 7 months due to increase size in 2 liver mets and has had 2 rounds of Alimta since then. She has about 5 days of fatigue starting day 3 but then bounces right back and has continued living a normal life, including working two mornings a week which is pretty good for an 81 yr old.She amazes me every day as she has tolerated everything so well up to this point. If you have read alot of the posts you can see people with cancer all vary alot in how they respond to treatments and even to the cancer in general. It is a rough road for all in the family so just try to keep life as normal as possible.Fill each day with love and good memories and don't forget nutrition... the doctors do yet it is very important in controlling cancer. The book Beating cancer with Nutrition by Patrick Quillin is excellent. My mom is now a 14 month survivor of stage IV NSCLC and if you met her on the street you would not have a clue that she has cancer.When you need to vent come to this or another website and do so as people reading your posts do understand what you are dealing with as it is a wild emotional roller coaster ride that is for sure. My biggest advice is never be afraid to question the doctors either as we have all learned they do not have all the answers and sticking to what they call the stage IV NSCLC protocols may not always be in your best interests so learn as much as you can and be your mom's advocate. Best wishes to you and your mom, I will add her to my prayer list. Jan

I understand what your going through because 5 months ago we found out my mother has stage 4 non-small cell lung cancer.My mother had to under go brain surgery and recieve chemo.It is unbelieveable how hard this is to go through. At some point in the I wanted to die because the stress gets to be too much for me.It feels like I have no control over my emontions anymore and I need help on how to cope with it!