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Your Friends and Family Cope (or Don't) With Your GIST Diagnosis

You have been diagnosed with GIST and now it is time to tell your friends and family. How you do this, what you say and how much you tell others is very personal. Some are comfortable telling all and some are more private. However, once you put your situation out there, the reactions of both family and friends can vary widely. Some people are supportive and "gather the wagons" around you, others that you thought were really close to you might "run for the hills". There could be anything inbetween the two extremes. On top of being diagnosed with GIST, you are now left to cope with their reactions.... good or bad.


Marina wrote:

You are dealing with the sociology of disease. Your disease affects other people, and how they react to you will affect your self esteem, your own coping. Be prepared that your ability to cope with your diagnosis maybe stronger and healthier than those around you. Some folks in your life may vanish or become scarce after word gets out. They are running from their own fears, and not you per se.

""Any advice on telling all friends and family of your situation?""

My husband informed other folks. I was simply so embarrassed that I had cancer. I think you just tell them. You can emphasize that GIST is a highly treatable disease these days with targeted cancer therapy. Surgery alone might be curative, but there are no guarantees for that for any GIST patient even if the tumor seems small. If the disease returns, you will have to take a KIT Inhibitor (targeted cancer therapy) as a chronic medication just like a diabetic has to take insulin. These drugs are generally tolerable, and you can lead a normal quality of life.


BOTTOM LINE is that your cancer (which was a complete biological accident and nothing your brought on yourself) is now causing a great deal of stress, pain, sadness, and uncertainty in the lives of your family who love you, but may have coping problems themselves. Cancer represents a lack of control from your body. It becomes a small step to adopt a mindset that cancer represents a lack of control in personality or life style of the person who became afflicted with cancer.

People who have not yet had cancer themselves harbor a deep hope and superstition that they won't get cancer...that the key is to behave in a responsible or pious way..to be in control......healthy lifestyle, positive thinking attitude, live straight and narrow, exercise, stay out of debt, go to church, don't curse or swear, and give to charity...etc. The reality is that there is nothing a person can do to reduce his chances of getting many forms of cancer. But the thought that a person has NO CONTROL over getting many forms of cancer is overwhelming or even unbearable if you are healthy and trying to stay that way. So it is an easy step to blame the victim who gets the disease...You must have done something wrong...

Your cancer brings a LACK OF CONTROL into the lives of your family. This lack of control was imposed upon them, they may feel as though they had their own "ducks in a row"--lived well and worked hard-- but now they have to deal with your cancer. Shame on you for messing up the order and stability that they had worked so hard to maintain for themselves. To counteract your lack of control, they attempt to control ridiculous regimentation on the cancer patient...all with the goals of restoring control....they become the food police, the thought police, the exercise police, the theme is to restore control to you...you must have done something wrong in the first place.

Shame on you for not being in control. Did you not eat enough veggies? Did you indulge yourself in too much negative thinking, eating too many red M&Ms? God forbid, don't you know better than to drink lemonade----If I have to face your cancer, then the least you can do is don't drink the lemonade...don't you have any self control??? IF you behave better so that you can regain control of your body, then your illness won't affect me so much.

This subject was recently brought to the forefromt when a GSI member wrote the following post to the list and asked for input from other members. Her post and some of the answers follow:


REBECA:

I was wondering what everyone's experience has been regarding their friends' reaction to their diagnosis and treatment. I have several lifelong friends (i.e. we've been friends since childhood) who I feel have not shown the care and concern I expected after my diagnosis. It's almost as if they are ignoring the issue. I think what bothers me the most is that they do not recognize what a miracle drug Gleevec is. I find I no longer wish to continue the relationship with these people even though I have known them for 40+ years.

MY QUESTION TO ALL OF YOU IS: - am I being unreasonable? Should I just accept that this is their way of coping with their own mortality?

Your input will be appreciated.


MARINA:

""Should I just accept that this is their way of coping with their own mortality?""

I think above is the answer. It's them, not you. It's a common situation.

Maintaining life long friendship is more important in the long run. First of all, they may eventually experience an empathetic awareness transformation regarding how their coping style hasn't been helpful to you. Second, GIST itself may become less important to you after many years of Gleevec success.


We have seen this with friends as well as family, if they don't walk in your shoes, then they have no clue. It hurts sometimes, but that is why we have this list, so we can talk with others that actually understand the disease.


MICHAEL:

When I was first diagnosed, I got a lot of reactions voicing great concern and asking (some presuming) whether there was a cure and how long it would take. These, of course, were questions that I also wanted answers to. I could only say, "I don't really know. I have been told I've got a maximum of 8 years to live." Factual, although, 6 1/2 years on, given that I feel well, live life to the full, I will be surprised if the 8 years prediction (by a non-gist specialist) turns out to be true. Of course, I hope to experience that surprise in heaven, although I do not wish to be presumptuous on that point!

I did a lot of research on the internet. This was 2004 and the news did not look even as good as 8 years. It looked as if ALL gisters died after 5 years max. I did not relay this to any but the closest people, as I did not want to upset them! And, of course, that gloomy prognosis turned out to be wrong, I'm glad to say.

I just answer the questions that people ask, as exactly as I can. However, there are two sides, at least, to gist. One is that I do not want it to be the single big issue that defines my life. The things that define my life are my family, my Catholic faith, my hobbies and my favorite football team. Gist is a late and unwelcome intruder. If a burglar broke into my house, he would be unlikely to become as important a part of my life as the aforementioned. As far as I am concerned, gist is an illness - it is just one that I cannot get rid of. Of course, it makes demands on my attention and requires me to visit hospital for scans every three months but I refuse absolutely to let it take over. On more than one occasion, particularly when about to have surgery in 2005, I have offered it, in humility, to my Lord and Savior, for him to take care of it.

Friends, even those close to me, have a very different perspective. My life might be "distorted" by having to deal with gist but my friends' lives are not. When I meet them, gist is not uppermost on their minds. What is are the things that I really care about - my family, faith etc. More often than not, I talk to my closest friend about how the team that we both support is doing. We sometimes stroll into questions of faith (he is an avowed atheist), as well as the health of our respective mothers. Only just before and after scans are due does gist enter the conversation. It is not because it is the "elephant in the room" that no-one wants to talk about. It is because, as far as I am concerned, there are simply more interesting things in life than gist. If I deteriorate, things might be different. That has not happened - yet.

In my experience, everyone cares. But they do not necessarily know how to talk about it. They perhaps think that they would be devastated to be diagnosed with cancer. I have more than once been asked whether I was devastated. The truth is, "Not really." Why? Because I have always felt that the doctors were giving me the best available treatment and being basically honest. I have also had a great faith that Jesus would not call me to be with him in heaven until the appropriate time - and that he would decide that time, quite independently of whether or not I had any illness. We humans might revise our life expectancy on the basis of illness but our Lord does not.

So, to answer your specific question: you are not being unreasonable, to want to talk about your illness with your friends. They may be reticent about "reminding" you that you are ill, and thus hesitant about raising the subject. It may or may not be their way of coping with their own mortality. It could be something else. Anything is possible in the infinitely complex matter of human relationships.

Another thing to bear in mind: you may well be one who takes a great interest in your friends' illnesses - but not everyone is made in the same way as you. I am sure that your friends are interested - but, as I indicate above, a bit unsure of how to approach the subject. Take the bull by the horns. Next time you are with someone whom you consider to be one of your closest friends, tell them how worried you are about your illness. You might be surprised to learn that they were only waiting for you to give them this opportunity to talk to you about it.

Gist is full of surprises. Had I taken much notice of internet wisdom in 2004, I'd be surprised still to be around now. Those few years ago, there was only Glivec and Sutent. Other drugs were on the horizon. Now even more treatments are on the horizon. This, of course, gives rise to another surprise: this is a rare disease but the drugs companies are spending millions researching treatments. And, of course, the best surprise on my journey with gist was discovering the existence of excellent forums like this one, where there is no limit on my ability to share the trials, tribulations and triumphs of my journey with gist.

Trials, tribulations and triumphs: could this mean "try, try, try"?

Another thought: until you ARE diagnosed with cancer, you don't realise how you will react. Very often, we expect people to react in a certain way and we are surprised, disappointed or even angry if they react in a way we did not expect.

Life with gist is bad enough, without having to live up to a host of expectations, some of which we impose upon ourselves. "Must keep positive; must be brave; must not cry; must accept all offers of sympathy; must be grateful for all offers of "anything we can do..."; must cope; must not forget to take my pills; must carry on as if nothing has happened; etc etc. It is enough to drive even the most patient person insane!

So, let us have fewer "expectations of perfection" from one another, whether or not the person concerned has gist or anything else. It seems to me that so much human conflict arises because of misunderstandings or people not reacting in "the" way they're "supposed" to. So, go easy on one another. It's never worth losing a friend over a misunderstanding.


Michael responds:

Got it in one, - like many people, she has all the right responses to problems that you can see. It is almost as if us gisters have an obligation to look ill, in order to get recognition that we are, indeed, ill. How many of us, when we respond well to the treatment, get gasps of disbelief when we say we have cancer?

My wife does not roll her eyes when she sees me on this forum. She just makes comments about the amount of time I spend on the computer, particularly when she wants to use it! She IS worried, she DOES come to most of my appointments (she only does not if she really can't).

We are all different. Vive la difference!



JOHN:

I ran into the same thing with many friends. They really didn't say anything when the learned of my diagnosis. I talked to some of them and most said they didn't know what to say so they said nothing. Now into my 11th year I just don't worry about that kind of stuff. Really not important in the grand scheme of things. Just keep up the hope and keep taking the drugs and enjoy what you have. We really don't get anymore than that!


DEBBIE:

When it's all said and done, they are still your friends. Everyone copes differently. It's hard but we have to accept where people are and how they deal with it. It may be it brings up painful memories for them to speak of cancer, or a fear that they have of the disease. You never know what someone else is dealing with. Some people have cancer, and never tell anyone except very close friends. As stated before, they don't want to be defined by a disease. I have some who don't know what to say and have taken the viewpoint, that if I want to discuss it, then I will bring it up. They may be waiting for you to bring it up in discussion. Give yourself some time.

On the other hand, I found I pulled back when first diagnosed. I "un- friended" (is that a real word?) lots of people on face book. Because I didn't want to answer a million questions every time I logged in, and didn't think people I hadn't seen in years had any business knowing my very personal business. Now, after 8 months into it, I am picking up those friendships again. Friendships are precious, don't discard, what you really do treasure. You cannot control how people respond and deal with their own fears. There must be something wonderful about them, or they would not have been your friends for so long. Give it some time. Give yourself some time.

  • Live Life - not cancer*

ANNE:

Just read through all the replies to your post. I agree with everyone who said that longtime friendships are precious and suggest that you give your friends time to adjust. Someone said something about how GIST does not define his life and that's what my husband has been determined to be like. So it's pretty easy for us to be around our friends....he updates them on where he stands, what his most recent scans were like, etc. None of our friends had ever even heard of GIST before his diagnosis, so he sees it as his "mission" to raise their awareness of the disease, of the research, of what targeted therapy means, of the fact that he is living with cancer, that his life is good, etc. So many people think of cancer as being a death sentence and it is refreshing to talk to so many GISTers who are living with the disease and enjoying their life. Share that with your friends and it may alleviate some of their fear of how to talk to you.

Hope what I said made sense.....wish you luck!


MARTHA:

I have had the same reaction to "cancer", not so much from lifelong friends but from casual friends. I decided I have to do what is best for me. If a friendship drags me down I put it on the back burner for now and concentrate on the ones that are best for me. I figure it's a matter of survival. It still hurts my feelings sometimes, ESP when it's friends who didn't hesitate to call on me when they were in need. I truly believe negative relationships can drag you down. It's still so hard -- hope you find a solution you can live with. This is the pits, isn't it?


BEV:


I pretty much agree with everything already said.

Back when we were getting GSI together, I started an interim site called "Friends" for about 80 of us who wanted a place that wasn't constantly asking for medical information or money or censoring posts or beholding to pharma companies for salaries and perks. Anyway, it was set up more as a message board, and we would have "threads" of topics.

A favorite and incredible topic we had there was called something like "Worst Things People Have Done or Said since we were diagnosed."

Oh man, that thread ended up making us laugh so hard, as almost all of us "topped" one another with shocking or thoughtless things friends, family, or acquaintances had said or done. Our personal horror stories ceased being quite so hurtful when shared and laughed about (and really, some were so mean or hurtful you just HAD to laugh when they were pulled into the light of day and shared!)

As we shared, the heavy burden of carrying around those various hurts lifted. They weren't in the dark corners of our minds anymore, they were out there and it became more of a "the emperor has no clothes!" than private pains and disappointments.

We also learned a lot. The most important thing we decided was that people, no matter how many wonderful qualities they might have, can be weird about death and severe illness that might lead to death. They just say outrageous thing, or avoid the issue entirely because they really have no idea how to help, and don't want to "hurt" by saying the wrong thing. Some were just not that nice, and our illness brought that into clear focus. Most were simply clueless and scared and either clammed up or blurted out exactly the WRONG things, but not out of lack of caring, perhaps out of caring too much.

One of my friends had a full-out breakdown with my diagnosis and after my surgery, became cruel and cold to me while I struggled to recover. She had recently gone through a horrifying experience with the love of her life and fiance, being his primary care-giver as he slowly and painfully died from Kidney cancer. My surgery following just a year later was just too much. It took two years, and a lot of eventually talking to save our relationship. Was it worth it? YES! YES! YES!

We are back on track and I love her to death. We have since talked it all out, and she is there for me in every way now. Timing.

Some friends can handle this stuff, some can't. Some need time, or have other issues which make it hard for them to cope, such as a parent dying long ago from cancer, and your diagnosis brings up all of that pain and terror.

My best advice is to just give them all a break, or benefit of doubt, and to compartmentalize your friendships a bit. Talk here, or to those who are able to give you what you need as far as the cancer side of your life. Let the others fill up all of the other things that make up who you are, and be kind to them, understanding that their inability to be there for you in the way you want probably has nothing at all to do with YOU, and everything in the world to do with THEM and their own fears or concerns about how to act or their own feelings about vulnerability.

They probably want to do the right thing, but quite simply, have no clue how to do it, or at least not right now. With time? They may really surprise you.


Deborah:

Boy, if one more person who does not have cancer tells me, "just one day at a time" or "just this moment", I am going to scream.


L:


In terms of being supported by spouses and others: my spouse has been terrific! Always there for me. But even he is not always able to respond emotionally when I am hit by fear or worry. During my first cancer experience my elder brother and my best friend from high school were very present and supportive. But my next younger sister, to whom I had always been close, never called, sent a card or acknowledged my struggles. She has been more supportive with the other two cancers, however. I think my being the first one in this generation to have cancer scared her.


Gail:


I have also noticed our small circle of friends has kind of dwindled. It seems we have more in common with someone we just met who has had cancer than our oldest friends. Another cancer traveler knows what it's like. One thing about GIST that's different from other cancers is it's never over... and friends who have never had cancer touch their lives don't understand. We are different now, part of a different group. It's almost expected that you lose your hair, feel tired and sick for a while... and then it's OVER. With GIST it's NEVER OVER and nobody understands. We have had so many friends say "well when you HAD cancer", or "you look just fine",or they just don't believe you. They kind of roll their eyes as they glaze over when you tell them about Gleevec and C-kit and all the science of GIST. Yes we are in a special club folks...



Sam on Parents:

The thing is I am not accepting of it, far from it, it occupies almost all of my thoughts (aside from when the children upstairs are screaming and pitching tantrums and running around like little banshees...) My parental situation has been bothering me for many years.

I have tried to talk to them (parents), but they turn it around and make it like I am the one that is attacking them because they really feel that they have done nothing wrong - so I end up feeling worse because I am not getting the support from them that I want and I feel bad because after such a talk they get angry with me for accusing them of doing things that they claim they never did. It has always been them against me. No matter what, my father would forever take my mothers side even if she was telling me what a horrible person I was . He would not ask what happened, he would just automatically gang up.

Over the last say 8 years or so, my mother "forgets" everything I tell her..... important not important she just forgets it, saying that she has too much going on to remember what is going on in my life. That is very hurtful, I understand she has stuff going on but I am her only daughter (her only kid for that matter). It is not ideal that I am not talking to them I know that, but I have tried reaching out to them at every other angle I can think of and it usually ends up that I get hurt and it takes me days to get over it. I have been depressed because of it. In the past that has not deterred me from being there for them, but it has really become a one way street and I am alone.


K:

Concerning your mom - just a quick thought - have you tried talking to your mom about her fears concerning your disease? The way she is acting sounds to me like she is scared to death for you and afraid to talk about it. If you ask her head-on about her fears, the dam may break, giving you an excellent chance to have the emotional conversation you both need.


Lynne:

With my four sons, who are ages 19 to 24, I do think its denial and I'm protecting them for now but we don't keep anything from them. Fortunately, all my scans have been good so far so its been great to share that. They always seemed relieved with the news. I do know they worry and tell them if they need to talk, I'm here and I'm okay to talk about it. Funny, one time when my older boys (24 year old twins) and I talked they told me there fear was how their father would survive if I died. They assured me they would be that sad I died but would be very concerned for their father!!!! I thought that was so sweet.


Martha:

When I was young, with small kids, I reached a point in my life where something had to give. My family that I came from had me feeling torn and guilty and insignificant, and I spent every waking minute and all my conscious thoughts wishing that they could be like other families instead of self-absorbed and demanding. My feelings were always hurt, I was depressed, I was mad as hell, and I was so obsessed with it all that I was alienating my husband and my closest friends.

After reading every self-help book I could devour, I came to the realization that this family I came from was very dysfunctional. And through that time of painful realization and growth, I learned two important lessons that changed my life. First I had to accept that I could not change any one else nor could I change or control their behavior -- all I could control was my reaction to their behavior. And second, it was up to me to "stop the cycle" and take great care to see to it I wasn't perpetuating the only kind of family behavior I'd ever known with own husband and kids. I shed a lot of tears and at times felt like my heart would break, but I grew to accept that it just "was what it was". I guess it's similar to my cancer diagnosis -- once I got over all the initial emotions, I had to accept that "it is what it is." Only then could I get on with my life in spite of cancer and side effects from Gleevec.

I'm sorry your family doesn't give you what you need and want so desperately. But I hope you can learn to find that support and unconditional love you are looking for elsewhere. Everyone loses. but you can find a way survive and thrive. Good luck in your journey!


George:

"It is almost as if us gisters have an obligation to look ill" You are certainly correct about that Michael. It is almost as if I have some kind of obligation to others to look frail, fragile, and pale and all those other things. I can't even begin to count the number of times someone has said to me, "You certainly look good." My response to them is usually, "I only wish and pray I felt as good as you say I look." Do I have some kind of responsibility to others to appear to them as they think a cancer patient ought to look? Most certainly not! In fact just recently someone who knows how much I am struggling to gain weight told me that I look like I am gaining weight because I have a "belly." Well my friends, the "belly" is due to the tumor load and nothing else. It is because there are so darn many tumors in there and nothing else. The only response I can give them for that is the surgeon said that when he opened me up he found more cancer in my "belly" than he had ever seen in a person before. Most certainly I am going to have the appearance of having a "belly." I am truly happy as long as that "belly" does not get any larger. Then perhaps the weight will start spreading through my body as it should.



A friend with another Sarcoma (not GIST) vents the same feelings:

Just because I look good :), am able to walk & talk doesn't mean that I am not seriously sick. I wish I could get this across to everyone! Some people think when they look at me.... like well you don't look sick. I didn't know that cancer or any other illness had a LOOK. Some days are good ones for me but others might not be. I am doing my best to stay positive but at the same time there are constant reminders internally that makes me aware of just how sick I really am.


George:

Rich had said, "I accept it and don't get snotty. At least not yet,"

That is something I find hanging over me each day. I do not waste a lot of time on it but I do have the concern that one day my countenance is going to be down and someone who means nothing but well for me will say something on the nature of how good I look and I will reply in such a way that I will have to make some amends for my reaction. The way it goes for me it will most likely be someone who has been in my life for some time and has not said one ill word toward me.

The day before yesterday I was not too nice to my 92-year old mother. It was the day after I got out of the hospital and I just did not feel well at all. There are a lot of well-meaning people in my life who make me nuts about eating. When I feel like eating, I will eat. However I get nagged and nagged about eating. Unfortunately on a day I felt pretty rotten my mother started in on me about eating right after she walked in the door. Usually with her, and some others, after I apologize I get the line about how people care for me and are only trying to help me. It just does not sit right with me.

One thing I can say of a certainty is that life with GIST can certainly be a complicated matter. The social aspects of it are often more difficult for me than the health aspects. All I can say is that I have to watch my mouth and wherever necessary to get right with the Lord first and then to get right with whomever I have offended with my mouth.


L has added:

I have found myself in a similar place, recently. Though I have not gone through the physical challenges that you have faced and so many other GISTers, I have still found myself questioning the very existence of my life. My sister passed away, this year, in April. It was because of her death (long story) that the doctors detected my GIST only 2 months after she passed. 4 months after her death, I was in the operating room. 6 months after her death, I started gleevec. In the meantime, we have a special needs child (of our 3 children) that requires ongoing care...parents who are in need of a great deal of care...and side effects that make it all difficult to cope. And I cannot apologize for being in a place where even God is outside of my glass dome. I only have room for me, here. I come and go, as required...but, for now, no one else is allowed inside. It's all that I can do to get through one day. Funny, but when people ask how I am doing...I give the typical "fine"...occasionally I just let go and tell them how I really feel...doesn't seem to be something they are interested in hearing. I can see their demeanor change into "why did I have to ask." But just as I allow joy and happiness into my life, I have to allow grief and sadness...they are a part of my life, too! I have no apologies...just want understanding!