My family's reaction to my cancer...?

Question

I found out I have ovarian cancer last year. Although my family visited me in the hospital and I recovered at my mother's home, no one mentions it. They don't ask me about my follow up tests, how I feel, my emotional state etc. If I bring it up there's an uncomfortable, silent moment until someone changes the subject. I understand it's them hiding in their comfort zone but I would have loved to have someone hold me when I was crying and screaming from fear. I feel that I have to have polite face on to keep them comfortable. My oncologist went back to Philly and I really feel alone now. Has anyone had this happen?
When you have family should you have to find strangers to relate?
My cancer is in remission so I guess you can't have everything right?
lonely in the middle

the answers here make me realize that strangers can reach you. I'm touched and honored that you share you sorrow and pain with me to help. It's helped to release some tears and see that blessings are big and small.
Thank you.
Karen

Answer 1

Karen, sorry to hear about your family's reaction to your illness. It is good that you are in remission. I am terminally ill. After my diagnosis, I found out quickly that there are two kinds of people - those that accept my fate and still think I am worthy of their love and friendship, and those who choose to live in their own happy little world and not say anything. You know, the kind of people who believe "out of sight, out of mind." I don't think it is a matter of caring or not caring, simply a selfish reaction to someone else's struggles.

You see it all the time when people look the other way when they walk by the homeless, or avoid eye contact with someone in a wheel chair. I hate to admit it, but before my diagnosis, I was just like that. I didn't have time for other people's problems. My diagnosis was a rude awakening - not that I was going to die. It showed me that I was not nearly as compassionate as I thought I was. I now will drop a few coins in the homeless guy's hand, actually talk to someone in a wheelchair, and really care about other people. It is too bad it took me 50 years to figure it out. Your family will come around. They act like they don't care, but they do. Deep down, all of us really care. We just don't like to admit it.

I am sorry you feel so alone. Please find a support group locally. There are a lot of survivors out there who would love to give you a hug and a shoulder to cry on. Just hang in there and enjoy every last minute you have. Don't worry about other people. The simple act of reaching out to strangers in this forum has shown you just how terrific people really can be. I have been amazed at the kindness of strangers. It gives me hope that we can leave this world in a little better shape than we found it. Good luck to you and know that people care. Keep fighting the good fight.

Answer 2

I've been on both sides, and it can be as hard watching someone you love going through cancer as it is having it yourself.

People are so uninformed about cancer, and it's such an emotive and scary word that most people don't know how to handle the situation. I know I didn't before I had cancer. And after I was diagnosed I found the most valuable support came from other people with cancer I talked to on online cancer support sites. I didn't know them, but they knew what I was going through. A few people I met in this way have become dear friends.

I love my family dearly, and I know they meant and mean well, but when I was diagnosed the main reaction I got (from friends too) was 'You'll be fine'. I beg anyone reading this who's dealing with someone with cancer, never say this unless you know it's true - which you don't.

Now that I'm in remission I find people think it's all over and I'm better, and I find myself colluding with this by being cheerful whenever the subject comes up so that they don't worry. Again, only those online friends understand the fear we live with, the knowledge that it can come back anytime, that every ache or pain, however small, could be a sign the cancer is on the move again. I don't think about it all the time, and less as time goes by, but it's always there.

I don't know what the answer is; but yes, it can be a lonely place to be

Answer 3

Every patient that I've talked to has said that you really find out who your friends are when you have cancer, and your best friends are the ones who just act normally around you.
Unfortunately, it is human nature when something happens to someone to hide in our shell and not approach the subject because we don't know how to. It isn't that people mean to be insensitive, its just that they don't know what to say or how to act and are afraid of saying the wrong thing and upsetting you. If I were you, I would outright tell your family how you feel. Tell them that they're making you feel worse and that there is no need to act any differently around you because you're still the same person you were before. I know this sounds morbid, but I've had many patients say that making a joke lightens the mood and shows people that you're still the same person. Either way, you're right: everybody, no matter who they are, deserves someone to be there to hold their hand and lend a shoulder to cry on when you go through something like cancer. You shouldn't have to turn to complete strangers when you've got a family right there.

Answer 4

You are right. They aren't handling it and they are hiding from their feelings. What about being very direct about what you need from them? Many people fear a lot of emotion thinking they will lose control and won't be able to get it back. I remember feeling that way. The other thing to consider is seeing if there is a support group in your area. I noticed that after a month or so people went back to business as usual when I was still feeling very needy. It helped me a lot. Even though your cancer is in remission, it is a question mark all the time. Take care of yourself.

Answer 5

It is the end of the world. You need your family to support you!!! I know cancer is a terrible disease and people dont deal with it well at all. I'm glad your cancer is in remission. You must still be young? I'm not sure what advice i can give you. My mum was diagnosed in May this year with a very aggressive and rare kidney cancer. she pasted away Sept 7 after only a 4 month battle. I miss her terribly. I know its a different situation but i too find people awkward around me, sometimes i just want to speak about Mum, even the happy times but people just change the conversation. And that hurts because i dont want people to forget about her because it is too painful. It hurts more when people dont talk about her cos it feels like they dont care. Contact me if you like we can be lonely together!!!! xx

Answer 6

I wish my family would leave the topic of my cancer alone. It is what it is. I am currently in remission, but chances are I will relapse again. I get so sick of having everyone ask this and ask that. I dont want to talk about it. I live about 300 miles from my parents and stuff, so they dont often get to come to my apts and stuff. Then they dont agree with my treatment choices or my life choices. My aunt that does live in my area, comes and goes so often from being interested to not being interested its so hard to talk to her. And my cousin is just completly terrified, both his grandparents died of cancer. Hes so scared that I am dieing he wont come around much. My mom is convinced I need to drop everything and get preg, which I am not even healthy enough to try right now, much less do I have the money for donor eggs and in vitro.

It is a lonely road whether everyone is doting on you or not. Be grateful that you know they care.

Answer 7

Wow its been 8 years. I came across this question and saw all the wonderful answers from awesome people. The cancer came back, the bladder cancer, then to my lungs. But chemo took care of it. My son took me to chemo, my father called or texted each day, my older brother visits me and calls more. Not all family dealt with it but there's love. I forgave and moved on. Learned this is no right way to handle this situation.
Hope everyone is doing well, handling life well and are blessed. Thank you.

Answer 8

Well I can't say much but don't feel bad about the way people treat you I had larynx cancer in 1998 had a laryngectomy operation in 2000 and I thought I had a lot of friends but they all disappeared even my family won't have anything to do with me but I've learned to live with it I figure its their lose. I can't talk but I live in the country retired and doing what I always wanted to do when I retired raising goats & chickens and enjoying life too bad my 5 brothers & 7 sisters are all missing out because I would love to share the good life with them. At least I can clap my hands and my dogs and goats come running glad to see me The best friends I have! All I can say is just don't feel sorry for yourself just get out and live life the way you want too. Most people just want to feel sorry for you and they don't really give a damn...

Answer 9

We handled this situation by being totally upfront, painfully honest, and providing everyone updated information with our online journal (caringbridge). We felt that it is lack of information and education about current cancer treatment(most people are still in the dark ages of 10-15 years ago about treatment). Our honesty has allowed the community, friends, and relatives access to what it is like for a normal, formally healthy teenager and family members to encounter, process, and live with a life threatening illness. I take every opportunity to educate as I can even if it is extremely painful. People need to know that you live with anxiety and fear, they need to know about rare diseases that affect healthy people. they need to know that cancer is worth the research, that people are surviving but at great cost to emotional health and finances. No one needs pity who is fighting cancer . . what we need is support that we are doing every thing humanly possible to stop this rotten disease.

I understand that you feel alone, but I am going to suggest that you start an online blog or journal about your current situation. Be honest with your feelings, even if you write it down and than erase it this will be cathargic . . keep a daily or weekly journal and give out the address of your site. Make sure you give the address to family, friends, neighbors, co-workers, and also make sure you have a support group of people who have your type of cancer. My son has a rare cancer and we have a core group of supporters who visit online and leave messages, we communicate through email, and online message boards. This too was critical because you can compare treatments, experiences, financial and educational information, doctors, facilities, holistic or naturopathic information, and anything related to cancer.

Stay strong and consider joing a few online groups . . you might find them very supportive of what you are going through.

ACOR : Email Support Group Lists
http://www.acor.org/

Cancer Care
http://www.cancercare.org/

Caringbridge Journals
http://www.caringbridge.org/

Carepages
http://www.carepages.com/

Good luck to you. You are not alone.

Answer 10

I'm so sorry sweetie, but you know, when I had my endometrial cancer, MEN did NOT know what to say. First, you know, they know NoTHING about the female body. But really, I think no one wants to be caught saying something stupid! Just know that they LOVE you. No matter what they say or don't say. You are LOVED by your family. And it is that very reason that nothing is said! It is sooo hard to know WHAT to say. Eveyone wishes they had these magic, beautiful words to make everything perfect for you, but no one does.
I'm soo glad you are in remission... you are so LUCKY! Lucky you caught it early enough to do something about!
I think the worst thing for me was being wheeled out of the hospital and knowing that there were women back there that were NOT going home, or if they were, they were going home to die! Survivors guilt they called it. We are so lucky!
You e mail me anytime! [e-mail]. wendy..