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Don't tell me

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

It is the middle of the night and I am at John Hopkins. It is dark and I am typing on my apple computer. My beautiful sister is resting in her bed from the surgery. It went well: the cyst is drained the reservoir is in place and she is neurologically intact. Emotionally, well that is another story.

This whole ordeal makes no sense to me. I have so much anger and so much sadness. I also have so much love for my sister.

There are few things that I know people tell me because they try to console me, but it just sounds so horribly wrong. I usually smile and nod and say thank you. But to you guys, I can tell the truth and speak my mind:

1) The Cancer made you appreciate life to the fullest. NOT TRUE. Kat and I appreciated life to the fullest before the diagnosis. We travelled, we loved our family, did tons of hobbies like horsebackriding, skiing, figure skating, playing the piano. We had dinner parties. We knew how lucky we were. Never took it for granted. I am a physician, so I see death all the time. I was living in the present.

Now, we can't travel, we can't ski, we are terrified.

2) What does not kill you will make you stronger. The stupiest thing I EVER heard. Kat and I were -and still are- strong women. She is a PhD astrophysicist, a natural born leader, able to lecture in international conferences at the age of 28 years old. On the other hand, cancer can kill you.

3) Everything happens for a reason: RIDICULOUS. Misery happens for a reason? The tsunami? The Hollocaust? The child sexually abused?

4) How are you? OK, I can't really fault people for that. They are being nice. My answer is usually: depends on the hour. It is not I have good days and bad days. I have good hours and bad hours.

goodnight to all,

J.

Fiona and Brad
Posts: 8
Joined: Oct 2011

Hi J, I know what you mean and agree with you entirely. I think people come up with these saying because they don't know what else to say. Let's face it we'd be shocked if a visitor of friend said "so is this going to kill you or what?' or God forbid they said " I'm soooo glad this didn't happened to me"> All things other people think in thier minds but are too afraid to say or don't want to say because they don't want to upset you further so they stick with the tried and true saying like the ones you mentioned. My son was dx at 8yrs old with an Oligodendroglioma Brain Tumour and even though he is now 13 I worry every day when this beast will rear it's ugly head again. Other people don't understand because other people haven't been through this gut wrenching hell. They think they know how they'd feel but they don't, I know I never had a clue how much this would consume my every waking moment. My life and my son's life will never be the same and I envy those who will never have to suffer through anything like this with their children. I long for the day when I can feel genuinely happy again and light hearted.....all just a faint memory now. All we can do is carry on and realise that people care but don't know how to react as they have never been in the same situation. They visit and don't drift away so that is the important thing to remember here. try to keep strong for your sister, it's a hard ask but worth every heart aching minute for someone you love. Good luck and I wish your sister a fast recovery.
Fiona and Brad

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi J:

I am sorry for your sister's health and your pain. I have also had a hard day. My daughter had her infusion and got sick right away. Now she is sleeping, which leaves me to my thoughts, just like you. "Why did this happen to her?" "How could this happen to her?" "Can she survive this?" "Can I survive her suffering like this?" "How will our family survive this?"
It is such a loss of a beautiful, thriving life even if we beat the cancer, their lives, our lives are forever changed.
The only answer I have for myself is to pray and give it to God, which I have been doing all day and I will continue until I go to sleep tonight. I wish Kat good health. I am sure that all of the love you are giving Kat is helping her. God Bless you both. Keep fighting. Keep pushing. Keep hoping. Pray.
Love, Edna

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Julia.

I'm so glad to hear that Kat's surgery went well. It's so good to be at a great hospital, with great doctors, and to be young and able to heal well. Now I hope and believe that the rest of Kat's recovery from radiation will go smoothly.

I was so impressed to read that Kat was working on her dissertation while she was finishing up her radiation treatments. David didn't do that well when he was doing radiation. Near the end of his treatments, he said that talking and even thinking seemed to take more energy than he had, and it wasn't worth the effort to him. And he's a pretty strong fighter too. He slept a lot during the fifth and sixth weeks of treatment.

Yeah, we've heard our share of comments that were not exactly helpful. We try hard to overlook them because we think that the comments are coming from people who are just as helpless as we are, who are just stumbling around, trying to bring comfort to us and to let us know that they care and that they love us. I can overlook a lot when it's coming from people who have proven that they care…..and to be honest, I am afraid that in the past, I have said some pretty dumb stuff too. I guess I'm learning a lesson the hard way….

Love and blessings,
Cindy

connsteele
Posts: 232
Joined: May 2011

I can relate to what you're saying. What we heard so much upon our son's diagnosis is: "Let me know if there is anything I can do." This from people three states away. I wondered how sincere those words were. But then we actually took some of them up on their offers and they all did respond: asked one person to check on our house (we had to stay with our son in Virginia for the first 3 1/2 months after his dx and surgery/radiation), another to get our mail and send us all the first class, and another to cut our grass. We even had several people show up when we came home to help us unload David's stuff into the storage unit and our house. It was hard asking for help, but I truly think that it made them feel good about being a help.

Having cancer, especially brain cancer, SUCKS!!! Have you read the book, "When Bad Things Happen to Good People"? I read that 26 years ago when our son was dx with his first brain tumor (medulloblastoma). Sometimes we want to find a reason for why this stuff happens, but I've come to realize that there is no reason. Bad stuff just happens and we'll just have to play the hand we've been dealt the best way we can.

Good thoughts and prayers that life settles down for both you and Kat and that you can resume doing those things that have brought you joy.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I am glad the surgery went well for Kat and she appears to be doing well physically.

As for emotionally? Well.....for me......the cancer DID wake me up to the fact that we are mortal, that we are all given a certain amount of time and that we really shouldn't take that for granted. I was guilty of doing just that. Not anymore. My husband and children say that I have awakened them up to what is important in life as well.

Perseverance through pain. I read that while I was in the hospital in January and February of this year. I was searching for Bible verses to help me make sense of why I kept having set-backs. Perseverance. While I don't necessarily believe the hype of "that which does not kill you makes you stronger", I do believe that we do have the ability to grow and learn from our obstacles we all face.

I do believe that things happen for a reason. I also believe that it is not my will but God's will that needs to be done. Everytime I try to "drive the bus" or take control, I run the bus off into the ditch. But I have learned that if I but accept and not try to understand, I save myself a whole lot of grief. That's not to say that I stick my head in the sand, because I don't. But I have realized over the last 17 years (fighting this beast that long) that sometimes there are no answers, no matter how hard we try to find them. I have become stronger than even I thought was possible and gone through things I never imagined I had the strength for.

I agree with your final statement. I hate it when people ask me how I am doing because they all want the same cursory answer: FINE. It tends to make them feel better. My true friends, the really close ones, look at me after that response and say "no, really, how are you". They get it.

Cancer SUCKS. Doesn't matter what type, grade, location, size, etc. that you have, it still sucks. It knows no creed, gender, religion, race, etc. It crosses all boundaries, whether you are well-off or dirt poor. And it still sucks!!! And it doesn't seem fair. But I would rather have my brain cancer than anyone elses type of cancer because at least I know what I am dealing with. I know how to do the dance and ultimately, the cancer won't win. It can't follow me to the grave or beyond. And for that, I Praise God every single day He lets me wake up and breathe.

Hang in there sweetheart. I'm pulling for you and for Kat. I know you can both do this, even if it does not always seem so.

Sending prayers and hugs your way!
Teresa

sadinholland
Posts: 226
Joined: Apr 2011

Well said Teresa! People mean well. They don't really now what to say, I mean what can you say to someone that is going through this really? Nothing makes it all better except to know that it is in God's hands and even though we don't feel it's true when we are going through our tough times dealing with illness,etc God really doesn't put more on us than we can bear. I sometimes feel I'm losing it, thinking about the tumor and cancer all the time. Repeat the Serenity prayer over and over again for strength. I will, as always, be praying.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Im glad that things went well. Praying for your sister.
I too have had my fill of the stupid things people say.If one more person asks me if Im all better now, Im going to screem. I lost my sister 10 days ago how on earth am I going to be all better now...

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

You continue to be in my thoughts and prayers during this difficult time.

When well-meaning, but clueless people, asked me how I was doing after I lost someone so very near and dear to me, I looked at them and said "As well as can be expected under the circumstances, thank you." Sometimes I said it through gritted teeth and a smile because all they want to hear is "fine". It makes them feel better.

Words are all I have and "I'm sorry for your loss" doesn't seem adequate at a time like this, but you are in my thoughts and prayers.

Hang in there sweetheart! Many of us really do care!

Hugs,
Teresa

rocket baby's picture
rocket baby
Posts: 22
Joined: Sep 2010

Glad that the surgery went well, I will keep your sister in my prayers and also 4thelove, my prayers are for you too while you are dealing with such profound grief. People just don't know what to say. Honestly, I'd rather just have them give me a hug than to say anything. This is such an ugly disease, this cancer. It sucks and it's not fair. It has changed my life and it will never be the same.....just different I guess.

I usually post on the lung cancer page which is what my husband is battling, but I'm here because he has had some hearing problems and I worry that he has brain mets. All of you stay well.

((((((HUGS)))))))
Michele

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