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I don't know what to do

Roxanne_
Posts: 5
Joined: Apr 2009

I am new to this sort of thing. I guess I am just reaching out. There has to be someone else out there like me. My sister has cancer. She is just getting prepped for chemo. A portacath?? The lingo is all so new for me I am not sure if I have it right or not. My sister is 1,000 miles away. I was there after her sugery and being there helped me becuase it is so hard for her to commnicate her situation I was right there and knew what was going on. She doesn't like to talk so you can't just call her, you can but she probably won't answer. So I e-mail her. Some days she e-mails a lot sometimes not much.Most of the time I try and talk about things other then the cancer. But, sometimes that is hard for me because I need to know what is happening. I don't want her to think that I am avoiding her cancer. I try to let her take the lead in the e-mails but I usually get 1 sentance from her to work with.Our mom lives in the same town that I do. This is hard too. More for mom who said to me today "You can't imagen what it's like to have your child going through this." What do I say to that? No I can't imagen. Nor can I imagen what my sister is going through. How do I pull this all together and be there for my mom, my dad, my sister, her husband, her kids. I don't know how to do it cause I can't imagen! I don't know what to do. I'm the baby of the family! I feel so selfish writing about how hard it is for me. I just want some help to do the right things, say the right things and be the sister that my sister needs even though I am 1,000 miles away. I want to be the daughter my parents need that is just blocks away. Someone help me please.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I am assuming from your post that you are young, relatively speaking. Why? Because as we get older we tend to get crustier, we tend to develop shells that allow us to worry less about what others think of us, including, believe it or not, our own parents (that is, to be sure, the hardest one).

The point is that you need to quit worrying about what others think. You need to be yourself, you need to provide support for your sister in the best way that YOU can. And when mom says "You can't imagine...", simply respond, with courtesy, "No, mom, but you can't imagine what it is like to be her sister."

Not to be confrontational, and your mom is right: Most of us parents would trade places with any of our children in this situation. But you did not cause this, you cannot cure this. You can only help.

Help your sister. Help your mom. They both need help. They both need emotional support, for sure. Give it.

Do not think that you should ignore your own needs. Take care of yourself, too. Do not be miserable, and do not have a pity party. But try to think from your mom's perspective on occasion, to understand what she is thinking and feeling; she would feel the same way if it was you.

In addition, please remember that this is not the end of the world for your sister. This is called the Cancer SURVIVORS Network for a reason. Let your mom know, and your sister, too, when you can, that cancer does not equal death.

Best wishes to your sister and her family, and good luck with your struggle in this regard.

You will be fine, if you will only be yourself.

Take care,

Joe

Roxanne_
Posts: 5
Joined: Apr 2009

I like that phrase "Get Crusty" Thank you for your words of wisedom. After reading through what you wrote numerous times getting it to sink in I have come to another situation...quilt how do you control the guilt? A year ago to the day that we found out my sisters stage of cancer and what was going to happen was the 1 year anniversary of my surgery and the good news followed 2 hrs after my surgery was complete that I did NOT have cancer. She went in with the same symptoms I had. She had the same sugery I did. I was fine! My mother keeps a journel and April 21st 2008 said "Today was a joyous day." She told me that for 2009 it said "Bad day". I don't get it. Maybe the guilt is part of the pity party? I do need to get rid of that! I am driving my husband crazy I think. So my question is "How do you stop being miserable? How do you stop the pity party. Will this guilty feeling end?"
I will do my best with mom. I do feel awful for her. At least I have been to my sisters since this began she hasn't. I know it is eatting her up inside. The only thing keeping her from going is that we are leaving it up to my sister when and if she wants us there. So by waitting mom is honering my sisters wishes.

green50
Posts: 318
Joined: Feb 2008

I am sorry to hear your sister has cancer. Maybe chemo will cure her. It has cured approximately 20 people I know. Yes I have cancer and even tho I am not cured I have been taking chemo off and on for 7 years. Everyone responds differently to treatments. I have ovarian cancer. As soon as people hear the word cancer they think its a death sentence. Joe is right, it is not. Of course its a terrible disease but you have to be positive and supporting to your sister telling her there are many who not only survived but have been cured. Tell mom you love her and will give the best support you can. I myself didnt mind people asking questions or talking about my cancer. Yea you get tired of talking about it sometimes because you don't want it to rule your life. Keep as positive as you can because like any disease it may be cured or controlled. My Mom said the other day "you will beat
this" as if someone above had said it. There is always and I mean always hope. Have faith and try to be positive. And because one person doesnt have disease and another does does not mean you should feel guilty. You did not give it to her. I hope you can work thru this and like I said maybe she will be cured. And yes Get Crusty. When my motherinlaw started crying I said why are you crying she said because you have cancer I said so... you have emphazema that doesnt meant were going to die. We are both still here 7 years later. hmm And remember tell your sister about this site and even your Mom, there are a lot of supportive people with good advice as Joe has given you.
Prayers and Hugs
Sandy

Roxanne_
Posts: 5
Joined: Apr 2009

Is that the right terminology??? Anyway, they put that in my sister yesterday. I got a call from my brother-in-law telling me everything went fine. She was in a lot of pain but they were on their way home. I took that as good news. After I got home my mom called and asked me if I had been told about the feeding tube. What? I didn't know anything about a feeding tube?? It turns out that when they gave the paperwork to my brother-in-law to sign off for the procedure there was something that he didn't understand so he asked. Here they had that they were going to incert a feeding tube also. There had been no mention of a feeding tube. THey gave them the wrong paperwork...screwed up with someone elses procedure! DO you know how many people just sign those things and trust in the medical proffesionals that everything is correct?? Now, maybe this is not that big of a deal but now it worries me what else could get screwed up! I also hate it that I only got part of the infomation! I live so very close to the Mayo Clinic I wish she was here!

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Roxanne. One of the first things many of us learned while dealing with cancer was that we had to look out for ourselves. Be it paperwork, medication doses, diets and even where they were going to stick the next needle into us. And knowledge about the type of cancer and treatments available is a must. Many of us spent hours researching our treatments so we knew the proper questions to ask Oncologists. Your sister and brother in-law should never be afraid to ask questions about anything at anytime. Now lets move on to the support part. Its awesome that your brother in-law and mother called you. That alone shows that they know you care about what is happening. It would be a good idea to thank them for including you and not leaving you on edge wondering what is going on. Your sister is going through a very emotional time right now and might not be talking much to anyone. Its never a bad idea to send a card, flowers or a personal letter telling your sister how you feel about her. I still have letters that my children wrote 6 years ago as they mean so much to me. Calling is ok even if you only get to talk to your brother in-law. At least your sister will know you called. If your sister worked and can't work now a gift card might come in handy. Cancer costs a pile of money for anyone even with good insurance. Most cancer patients need costly special diets to rebuild their bodies after treatments. Even sending them a phone card so they are not spending money calling you will help. Just making an effort to help in any way means alot. Many of us had friends and relatives disappear completly during our cancer. We soon found out who would step up to the plate when we needed help. Best wishes and prayers. Slickwilly

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

'Survivor guilt' is a common phrase in the cancer community and, I am sure, elsewhere. It typically refers to cancer survivors who have cleared the ultimate hurdle and been declared cancer-free or NED (No Evidence of Disease). I had not, myself, considered a case such as your own, where you were cleared with no cancer at all.

To state the obvious, it is not your fault that you did not have cancer and that your sister does. You know that on an intellectual level, clearly, but are having difficulty with it emotionally. If the guilt is debilitating, I would advise therapy of some sort. At the least, I would have a talk with my sister, express my feelings of guilt, and then listen to her say what I have just told you in the above: you have nothing to do with her having cancer.

Being free of cancer is taken for granted until the fear enters our lives directly. You have had that fear, have experienced it first-hand, and so you have an inkling of what your sister is going through. You should be very happy that you do not have cancer and that you are strong and healthy and able to provide support for your sister in this time of need for her.

Be positive!

Best wishes to sis and her entire family.

Take care,

Joe

green50
Posts: 318
Joined: Feb 2008

I have a port and am I glad I do. The mistake they made on the other well yea your sister and brother in law need to ask questions. I hope she is with an oncologist that is good. That would be great if she could go to the Mayo but there are so many good cancer centers and drs out there. Sometimes People will have to investigate who they are with. My gyno/onco was one of the best and he referred me to a cancer center closer so I didnt have to travel so far and those drs were excellent. I still see him once in a while since he is a female specialist and I am glad. Your brother in law just needs to ask. And yes they have counselors for families everywhere and it maybe what you need. God Bless you and your family and I pray she only has to go thru this for a very short time. I also pray you will make it thru too. My sister lives 1000 miles away too and I talk to her often and she tells me how she has the whole church praying for me and my friends on the cancer network. She wants to take a cruise with me. Hmm well maybe in a canoe neither one can afford and maybe after I am done with chemo LOL Again God Bless and keep us posted
Prayers and Hugs
Sandy

Roxanne_
Posts: 5
Joined: Apr 2009

You have NO IDEA how much all of you have helped me! I am so glad I found this site. THANK YOU SO MUCH! And please know that all of you are on my prayer list....I pray a lot! I think I have found my angels. I am absorbing everything all of you a sharing with me. Today was another bad day...I think. I got an e-mail from my sister. Two lines "Got a call from chemo nurse, heart may not be strong enough for drugs may have to use different drugs." Okay, is this normal??? Does this happen often? She has to go in for an EKG next Monday and they have moved out her first chemo treatment several days. I am trying to get some answers from someone...anyone but it just doesn't happen fast enough for me. If this is something that the Drs come across frequently I need to know or if this is rare and a BIG deal I want to know that too. I have tried researching but everything comes across vague. Or I get frustrated trying to find what I want to know.
Sandy...rent a canoe and go for a "cruise" with your sister. Think of the laughs you will have! I am going to look into some kind of theropy that really can't hurt. Although you all have been great too!
Thank you all! Bless you!
Roxanne

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