Monday, June 08, 2009

Struggling When Friends Disappear

Nancy's post: Struggling

When I was 14 years old my 6 foot 3 inch father suddenly started dropping considerable weight. He eventually dropped to 85 lbs and was eventually diagnosed with anorexia nervosa. It was a terribly complex situation as little was known about the disease at the time. Basically it felt like he was committing a slow suicide. I was in high school at the time and for me one of the ways to cope with the stress was to throw myself into my school work. It was one of the few things I could "control" and kept my mind from dwelling on the pain of the situation. In those 4 years there was only one class in which I did not get a 4.0.

In my early twenties the same week I was diagnosed with cervical cancer my father died alone in the parking lot of a hospital, not strong enough to make it inside. He basically starved to death. Again I found myself struggling with depression and found that my coping mechanism was to spend extra hours at work. I was evaluating software at the time for a major corporation. I ended up meeting and marrying the consultant on the project, my husband of 21 years.

Upon returning to work after a 4 week medical leave after the removal of my GIST I was asked to interview for a significant promotion; a job I began the same week I started Gleevec and just a few weeks before they found the second mass on my duodenum. Again, I find myself returning to my "workaholic" coping mode. In the fall when I took a week long vacation I found it hard to enjoy myself as I had too much time to reflect on the diagnosis, and the new issues, the side effects etc.

Bottom line, it seems clear that my psychological coping mechanism seems to be to throw myself into school, work, etc. It has really not been a bad strategy although I can't say consciously chosen. The thing of it now is that the gleevec exhausts me, so by the time I reach the weekend I'm exhausted and not able to do much more than a few loads of laundry, pay the bills, and go to church. Clearly my friends do not seem to understand.

I think they're even rather mad at me. Two of the three friends in my book club don't want to talk about GIST or cancer or acknowledge what is happening in my life. Another dear friend of 20 years, a pastor, hasn't called in months. The only friend who has shown no sign of judging me, who lets me say whatever is on my mind and heart without discomfort or criticism is the friend who lost her brother to cancer 2 years ago and her husband to leukemia 1 year ago.

I suppose I'm baring my soul to the hundreds (?) who may be reading this email. So I beg you to be kind if you choose to reply as I'm feeling rather vulnerable. But I'm struggling with scolding myself for not being a better friend to these people -- after all friendship involves a two-sided relationship -- and shouldn't I be able to muster the strength and understanding to reach them where they are instead of expecting them to come with me on this journey. Still, these last 6 months have become such a defining part of my life at the moment that it seems "fake" to try to "pretend" that nothing has changed.

Something really big has changed in my life, and while they want to believe that
everything is okay, and while I really am doing quite well, the truth of the matter is that in the morning on the way to work each and every day I cry, wiping the tears dry when I walk across the parking lot. And while I think I look normal and much of the time can act normally, the truth of the matter is that I can't go out on Saturday night with the girls because the gleevec has made me nauseated, exhausted, and I'm struggling with muscle cramps. The truth of the matter is that I care about them a alot and I feel really bad that somehow this distance seems to have crept between us.

Maybe if I was stronger I could do this differently. But I'm just me, doing the best job at living one day at a time, one moment at a time, in search of all the hope that I can find. Clearly I'm coping in a way that has worked well for me over these last 46 years.

But if I can't muster up the strength to find a different way of doing this will I be left with any friends?

So do I bare my soul and send this on, or do I play it safe and hit the delete
button????? Really I'm just being terribly honest and venting a bit. In the chance that there is someone else out there who is a bit like me and might take some comfort from my honesty.... I'll hit the send button. For the rest of you, thanks for indulging me by letting me share my struggle.




Dear Nancy,

IT is funny the way family and friends react to GIST sometimes. When I was first diagnosed in 2005 everyone including strangers offered tons of support. It was rather overwhelming. But, in a short time it all changed. To me it seemed that because I wasn't stuck in a hospital bed somewhere and because I wasn't going bald due to chemotherapy that everyone seemed to forget that I had Cancer.

GIST was like an invisible disease to me. Because on the outside I seemed to be holding it together. On the outside there was no evidence of disease. It was like when they heard I simply took a pill and the tumors would shrink that they forgot all about me. I became extremely depressed and even had others say "why does she sleep all the time doesn't she realize how lucky she is to still be here?" I would even have to yell at my husband "I do have a life threatening illness or did you forget?"

I went on like that for nearly 4 years. Until last month. I wound up in the hospital for 8 days. I had become resistant to the Gleevec and by the time we realized it, the tumors had grown, and once again I look 5 months pregnant. They have taken my insides completely over. Until my Doctor did some research and found out about Sutent, everyone including myself thought my time had come.

Yet once again I have taken the pill and seem to forget once again. This time I have no problem telling everyone, I might be feeling well, and looking well, but I still have a long battle ahead of me. I just might be dealing with this the rest of my life.

I think you should let your friends read the email you posted often times people don't know how to react or what to do or say when a loved one has cancer. My best friend needed a push from my husband, she was afraid to be around me cause she was having such a tough time dealing with it she didn't want that to show in front of me.

Speak up and if the behavior doesn't change well.......the good news is in times like these you find out who your real friends are, Since my diagnosis I have left some "friends" behind and learned that some I considered acquaintances were actually very good friends. Not sure if any of this helped at all...but I certainly hope so. I would love to be your friend.

(I, too, lost my mom to cervical cancer when I was just 20 yrs. old.)



Get this book and read it!!!

"At the Will of the Body, Reflections on Illness" by Arthur Frank.

It is one of the very best books about the sociology/cultural impact of major illness. There is more than psychological coping, there is sociological coping.
Illness is shunned in our society...If you act well, then by gosh to those around are as good as well...and they don't have to deal with the stress that your illness causes them...



When the chips are down it's time to see how your friends respond. Then on the other hand maybe their denial is their way of coping. Everyone copes his or her own way. My husband who is sick thinks if you don't think about it and don't talk about it then it goes away. I know in his heart he knows better but he doesn't communicate about things that are scary to him. He won't even really ask the doctor any questions. I don't think he wants to hear the answers. I think it
annoys him when I question the Doctor, but I ask away. LOL.

So give your friends a little leeway.........they may just love you so much they can't focus on cancer. And this group is new to me but seems to very good shoulder to vent or cry on.

I also think the point made about "only" taking a pill is true. I know people who ask me about my husband when I say he takes 2 pills a day give me the look. Like he's not really sick. And he seldom looks sick. He helps me to and from the car and I'm gimping along and he looks like the caregiver. People think I'm nuts I think. But he is sick and you all know it. It doesn't have to show. Even our own daughter who lives in the same house had a problem with it until recently when she saw him in his pj's and robe at 4 pm and wondered why he wasn't dressed and he just shrugged and said I had no place to go......then she came to me in tears and said "is Dad worse? Until then I think she was in denial.

Chemo is scary.........but taking a pill is nothing to these people.


Dear Nancy,

I feel just the same as you do. Nobody understands that taking that little pill, isn't the easiest thing in the world. My tumor was discovered in May 2008. I had surgery over the summer to resects it, along with a hysterectomy for safe measure. During the time right before and after my surgery everyone offered help whether it was driving my kids to school and activities, or bringing a meal over to the house, I too was overwhelmed by the graciousness of everyone. I have a friend that I've known since high school. We were like sisters. Do you know that my so called best friend never once came out to see me when I was in the hospital, or afterwards when I was home recovering all summer long.

Yes, she called to see how I was doing the first week I was home. But not once came to the house. Maybe she couldn't deal with my diagnosis. I don't know. We finally met up with each other during our annual "Parents' Weekend Out" in October.

Gleevec was still fairly new to me and I just couldn't party with all the other parents that came that weekend until the wee hours in the morning. Ten o'clock I went to bed. She didn't understand why I went to bed so early and took it personally that I was mad at her. My husband had to explain how my life changed and that I'm very tired and need extra sleep. I am still NED, but live with Gleevec. Nobody understands my tiredness, loss for words, confusion, or even change in diet. Because I look healthy, and have no tumors, everyone thinks that I'm fine.

This week, a lot of people got a good dose of the "No, I'm not fine" attitude. My daughter who is 12 years old, became sick in October. The doctor diagnosed her with mononucleosis. So for a couple months, all she did was go to school, eat dinner, do homework and go to bed. After Christmas Break, she started getting sick again. I thought it was mono coming back. Mysterious fevers and tiredness plagued her little body off and on accompanied with rosy cheeks. I took her back to the doctor and they ran a battery of blood tests on her. To make a long story short, they're thinking she may have Lupus. Her ANA was 640 and normal was supposed to be 80. Talk about the world crashing down it came. I have been a blubbering mess since I found out on Thursday. I'm trying to keep my composure around her because I don't want to alarm her. I figure I'll tell her when we're on our way to the Rheumatologist's office ( whenever they decide to call me back to make an appointment).

It's bad enough that I have to live with the fear of getting tumors for the rest of my life, but here's my daughter who may have a chronic illness that will be around for the rest of her life. Yo top my week off, today I was driving home from Walmart (we live in a small country town) and had a spinout on the road and landed halfway in a ditch on the side of a farm road. I had to call my neighbors to come pull me out. Then I tried to bake them a cake this afternoon to say thank you for their help, and when I tried inverting the cake onto a plate, the whole thing broke apart into pieces...and so did I.

Where are my so called friends? Even my husband is out skiing with my son and the Boy Scouts. Some days you just feel like crawling in a hole and covering yourself up. I think I will start a journal. I'll write down all the things that upset me and make me angry. Maybe that will help me to cope with life's ups and downs.

Thanks for sharing your story Nancy.

You're not alone.


Dear Nancy,
I too lost a number of "friends" after my recurrence, including someone who I thought loved me and I could trust. It's times like these that we find out who are real friends are. Instead of expecting you to go out with them on a Friday or Saturday night they should be offering to come round to your place to watch movies and chat. You are going through enough without having to try and fit into their ideas of how you should living.

You need to take care of yourself first at the moment a true friend will understand that. I hope I haven't upset or offended you I'm just saying what I believe to be true in my mind.
Peace, Love and Happiness


Dear Nancy,

I'm glad you hit the send button....
It's good to vent, we all need it, and should allow ourselves opportunities to vent..otherwise things build up and get too overwhelming...

Today was a day like that for me... several things have happened in the past few weeks, and I have been trying "to keep the lid on.".....

Last week we got hit by a hit and run driver, ...Today we were at a red light and got rear-ended again!!.. I totally lost it, and am angry and down.. I dialed 911 and totally lost it, started crying and carrying on... I totally overreacted.. (I wasn't proud of myself !)

Thank God we weren't hurt either time.. I'm angry that we have to deal with paying a $500 deductible for last weeks' hit and run damage caused by a jerk who sped away too fast for us to get an identifying plate , -- Today's damage ,we hope, was minimal, (need to get it checked underneath..)

It was just the unexpected jolt of getting hit again today, on top of everything else that has happened in between last week and this week... that pushed my buttons, and set off my emotional state to just shatter... all my anger, and fears just overtook me..--

As I said, I'm never like that, I'm the glue in my family, I'm the problem solver, the rock... but you know rock cracked and all my jagged edges were sticking out.... my rock needs polishing sometimes, and I needed consoling, and understanding ...and wasn't getting that need filled... I felt like getting on a plane and running away..

I'm usually pretty strong, and can deal with a multitude of things and handle them pretty well...I'm usually the strong one in my family, and no one expects me to lose it... but I am not superwoman... today superwoman cracked! I allowed myself to empty out...and feel some relief from all the pressure that built up...

It sure did feel good to cry and get it out of my system... it didn't change anything, but somehow I felt better after that cry.!!

I have found though, as you said, sometimes we sense that family and friends don't like to really listen to ongoing details of what's going on with what's happening with GIST...our fears and worries compel us to want to talk about it...we need reassurance and hope...

I don't think it's that they don't care, I just really think they don't truly understand ... they're uncomfortable, they don't know what to do to make us feel better, and I think in their own way, sometimes they are trying to change the subject to help us divert our energy & thoughts to more positive things... (which isn't such a bad idea, it's just I resist it sometimes.. even though I know it's good for me..that's my fear working in overdrive!)

There are times we really need someone to just listen, and show some concern and understanding... we need our big black hole filled... and are disappointed if the one we think might help doesn't come through for us...

I know most times no one can do anything for me, they can't change what's happening, I just need to be heard and have my feelings and fears acknowledged..having a sounding board really does help...

There have been occasions that I just walk around the house talking to my mother (who died in 94!) and just venting to her that I'm pissed off, angry, scared, whatever, --that I need help and don't know what to do, --- for me doing that helps me just to verbalize what's going on and get it all out of my system.. it's a safe thing to do in the privacy of my home.. (of course I only do that when I'm totally alone, otherwise people would think I'm totally nuts!!) I don't do that too often, but when I do it sure helps me empty out totally.

Marie's advice sounds reasonable to let your friends know how you're feeling.. -- our family and friends can't read our minds... sometimes we just have to let them know we're vulnerable and need them, and tell them exactly what we need...

I have found when I sincerely ask to be heard, and feel like I can't take it anymore, and reach out and let it be known that I'm in that state of mind..and need to talk and be just listened to ...with no expectations ... it helps soften the situation.. and I'm granted some uninterrupted time to vent... I just have got to remember to be humble enough to ask,-- and not demand it... It does work better than me saying something negative which turns off whoever I'm wanting to listen to me... and not put them on the defensive...

I'd say wear your heart on your sleeve and give them a chance to try and show some understanding and help lift you's worth the chance.. don't keep all that bottled up inside you...

Good luck to you,... hang in there...I'm rooting for you....


Dear Nancy,

I cannot say that I can truly understand what you are feeling or what you are going through. So far, my personal health has been blessed. My father was recently diagnosed with GIST in December 2008. I want to tell you to be strong, but also to be honest with yourself and your friends and to never be afraid to ask for a little help. I very much appreciate you sharing your story.

I signed up on the GIST support group the day I found out my father had GIST. Since that time, I have listened to the advice given, read about individual experiences and learned an invaluable amount of information. I shared what I learned with my Dad, and I was able to communicate knowledgeably with his doctors. A few weeks ago, my Dad requested that I not ask so many questions and just respect his decisions. He has been losing blood. I had wanted him to follow-up with a GIST specialist and he wanted to wait and see how his body does in the next few weeks. In any case, to
make a long story short,.. I have respected his request and have pulled myself out of his "medical arena". My dad and I talk every few days, but not so much about his health. He says he is doing okay and I leave it at that.

In these past few weeks, I haven't been reading too many of the GIST support mails. However, your email caught my eye. It opened my eyes in that maybe my Dad is not entirely okay with everything. Maybe he just wants us not to worry about him?? I think it may be hard for him to admit he may feel lost or vulnerable at times. I think maybe it may be hard for him to ask for help and maybe even hard for him to receive help. After reading your email,.. I think that I'm going to be a little more observant in my visits with my Dad and be sure that he knows I am here whenever he needs me, at all times of the day.

Back to your situation,... maybe your friends/family think you are okay because of the way you present yourself (i.e.., like life is okay, you are strong & doing well)?? Maybe your friends feel like you don't want to talk about your cancer? One of my golden rules in life that I try to follow,.. never make assumptions. Life is too short to waste your time trying to figure out how someone is thinking or feeling. Assumptions make life cloudy and unclear. It is hard to make an assumption on how someone feels without coming out and asking them directly. You may be making some assumptions on your friends feelings and they may be doing the same about you.

My advice to you is to just come out and talk to your friends,... tell them you need a listening ear, a shoulder to lean on. If they are true friends (which I'm sure they are),.. then they will be there for you. It is okay to ask for help. On the other side,.. you should always know that you do have the inner strength to pull you through the tough times.

Well,.. that is my two cents. As a distant, unknown friend,.. my prayers our with you, your friends and your family. I wish you the strength to reach out your hand for help as you continue to walk forward in life. May you always feel the love and support of your family and dear friends. I appreciate your honesty,.. it has shed a little light in my little world.

Thank you and take care,
Jennifer from MI



Dear Nancy,

Thank you so much for opening this topic. As you can see, you are certainly not alone!

You have had some really good advice here, so I won't repeat it, even though much of it is what I would have said myself. I will just add a few other thoughts for you.

Some people are just hopeless are illness, and it really doesn't have that much to do with you. They don't know WHAT to say, so they avoid putting themselves in the position of saying anything at all. Avoiding you, or avoiding the subject...both are just tools for their own issues with illness, or loss, or being frightened. So, as hard as it may be to hear of understand, much less do, try not to take their inabilities personally.

Some have issues with cancer themselves, they lost a mother to it when they were young, or cared for someone they loved who died of it, or even had to shoulder work for a disliked co-worker who talked of nothing else for months, and still harbor resentments that additionally make them feel guilty for even feeling pissed that they missed their child's awards ceremony because of CANCER.

You just never know.

I didn't lose any friends, but my best friend of over 40 years had a breakdown about my cancer, as she had spent the previous year caring for her fiance, and he died a horrible death from renal cancer. It just wiped her out, and she shut down. Of course, part of my understood most of this, but it still hurt like hell and added months of stress to me. I realized that even though I was sick (at the time I was going through a lot with GIST, and thought it had recurred, etc.) that I needed to pull it together, realize that it wasn't all about me, and forgive a LOT of really shocking behavior from her.

Today, we have worked it out, and that long friendship survived.

With others? I just talk quite frankly, when it comes up, I treat it with about the same level of being comfortable that I would mentioning that I have split ends, or talk about their twins throwing a baseball through a neighbors window. I don't adjust, I don't only talk of cancer, but I think my frank acceptance of being a cancer patient had slowly helped my friends "get comfortable" with it.

I treat is as if it is just part of me. It's NOT all of me, but I sure won't hide it or tiptoe.

I have done this from the beginning, and it seemed to work out pretty well, even though I certainly sensed the discomfort of some in the beginning. I would get a hushed " ARE you doing?" and reply and then move on, and after a while, once they realized that I didn't expect them to "fix" it, or always cheer me up, or say the right thing, they began to me more at ease talking to me.

Did some say hurtful or stupid things at times? Of course! I let it go. I knew it was hard for them to find their footing with this new danger to them, the danger or caring too much and losing someone. They were (and occasionally still ARE) awkward, and I had to get a tougher skin while they learned to cope.

Marina recommended a good book for you. Another, and their is an excerpt on our website is, THE TYRANNY OF POSITIVE THINKING. That one may help you cope with those who feel cancer is a state of mind and if you just fill yourself with positive thoughts or eat correctly then you would be all better.

All of that said? There are friends, and then their are friends. Some, you may have to let go. Some may be worth your time and effort of helping them learn to exist in this new world, no longer just the two of you, but this third wheel you are forced to bring along, Cancer.

It doesn't seem fair that with all you have to cope with, you also have to cope with friends' inability to cope. As my old boyfriend used to say, "life's not fair." Hold out a hand and help them muddle through it. If you are too tired, just SAY that, "Sorry, this chemo is such a bore, I am exhausted by 10 PM, but I am usually great around noon! Want to have lunch next week when I am actually, you know, awake?"

Laughter really helps. Forgiveness and understanding help more.

Meanwhile, you now have a whole group of people you don't have to explain yourself too, so vent here, while you teach the friends worth teaching in your non-cyber life that you are not made of glass, but still need a bit of TLC sometimes.

Some people also find a counselor to be a great help. It's a person who is just on your side, always, and who can listen to all kinds of things without being hurt or upset, and even help guide you with insights about yourself, and others, and how this whole thing can be a pain in the wazoo, but still coped with.

Some people find in-person support groups to be a help too, shared issues in person. (Frankly, the whole idea of that gives me the willies, but for some it's wonderful.)

Welcome to GSI.
Hang in there, you will get through this.



I've just finished reading your posting, along with those of all who replied to it. I am really glad that you brought up this subject.

Selfishly, it makes me think of how my husband is handling his disease. He is a really easy-going person who never over-reacts, always thinks positively. Among his siblings, he has always been known as being amazingly good-natured. So naturally, none of them are surprised by how he appears to be handling having GIST. He has a very positive outlook, figures he will handle things as they occur --- no reason to worry about "what might happen." And yet, your email makes me wonder what really goes on in his own mind.........thoughts he does not share, even with me.

From his initial diagnosis three years ago, he has been upfront with our friends and family and very willing to tell them how he is doing. Luckily, he has not had a tough time with Gleevec so he usually feels quite well. Our friends have been really supportive — I even think it makes them feel good to be able to talk to Bob about his disease.

You know how you have different friends? --- Some are friends with whom you enjoy common interests? Some are friends who have known you for years? Some are friends because they are work colleagues? --- And some are friends with whom you can share most anything? This listserve has many people who will fit into that last category — new friends...... me among them!

I'll be thinking of you today, wishing you a good day!

In one way or another we all get surprises. Divorce and YOUR dog puking on THEIR carpet are a few more tests. What it comes down to, for me, is family / friends to be honestly empathetic. Don't have to say anything in words. Cancer is not contagious. You will live longer than many of "THEM". Have a hot chocolate and read/write a few more posts, take a breath and look somewhere else; even from well meaning but clumsy people. Your and my nerves don't have the endless capacity to endure it.


I am a new GIST member for the past couple of weeks and this is my first encounter reading about your "life with GIST". I merely want to say, that you have truly hit the ball out of the part on this one.

I was inspired by your words and appreciate the encouragement you have rendered. For the past 13 months, I too, have felt rather abandoned by close friends, business associates, even some family members and thought I was the leper.

Comforted by your thoughts,



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