Anyone else need to vent about this??

[Patti B]

I had been feeling bad over the weekend about some stuff and thought about starting this subject but after talking on-line to a wonderful new friend that I have met through this forum (Christine) I felt much better. But in the last few days I have read several comments from other people who are sharing my thoughts so I thought I would start this as a new post.

Is it just me or after a while, do our loved ones and friends seem to just "forget" that we are sick. When I started this journey 14 months ago, my friends and family rallied behind me and I was blown away with their caring and some of the things they were willing to do for me. People on my son's swim team sent me food every night for two months when I was too tired and sick from the inital chemos. It was wonderful and please know that no matter what, I will NEVER forget their kindnesses and genurousities to my family and me.

But now, it seems as if so many people have either "gone away" or act as if there is nothing wrong with me. My husband and I got into a fight this weekend - I always have to remind him over and over and over about everything. He did his usual forgetting this weekend and tried to just gently tell him that he needs to set up some kind of a system, notes, whatever, because the time may come when I will not be in good enough shape to remind him of everything that needs to be done. He blew up at me and said that I was using my cancer to make him feel bad!! He expects too much of me, I think, sometimes (I am stage 4) and thinks I am still the "superwoman" I was before all this happened. Then my sister calls me and I was telling her that my having to take blood pressure meds is not a big deal to me what with my other medical problems. She says to me "what medical problems"......hello - cancer. Then my neighbor gets mad at me because she wanted me to babysit her 7 year old boy Monday while she goes to work who is SICK....flu, maybe, maybe strep throat. Of course I tell her no, I have chemo next week and don't need to have it cancelled because I am sick and she gets MAD!! Now my family is calling me asking me what time am I planning to have Thanksgiving this year. Not - do you feel up to it this year and what can we do to help - just what time should we be there??

My really good friends are still my really good friends but I feel like others have just disappeared. Its almost like, well, we were there to help in the beginning cause we thought she was going to die but she didn't so.......

Am I the only one who feels like this?? I hope I do not sound like a whiny person but it does hurt sometimes. My sister lives 5 minutes away and I am waiting (for 14 months now) for her to say I am going to the grocery store, can I pick up anything for you?? And everyone knows that my husband is a long-distance truck driver who is only home 1 1/2 days per week.

Is it because we don't look or act like we have cancer?? I know I don't "look" the part and certainly don't feel like I am sick - but isn't that the point - to enjoy your family and friends while you can? Do we have to be bed-ridden and wasting away for people to take the time for a phone call??

Or is it just me??

Would love to hear how others feel about this!

Prayers to you all.

[nyka69]

Forgive me if you only wanted to hear from survivors. But my guilt is driving me to respond.

I have a sister that has been living with cancer for 2 years. We are very different, so we aren't very close...BUT SHE'S MY SISTER! She doesn't like to talk about her health. She doesn't like to accept offers of help. She's been very independent. She takes care of her household, her children, and works as much as possible, despite numerous surgeries, rounds of radiation, and chemo.

Despite what I've been through with my husband...yeah, sometimes I forget what she's facing. And it makes me feel terrible.

What she does ask for is opportunities to spend time together. And I'm forever blowing her off. What the he** is wrong with me???!!!

Patti, THANK YOU FOR STARTING THIS POST! In writing this out, I see the error of my ways.

I'm sorry you are going through this with your family, but you have helped mine.

Signed,

Guilty As Charged

[Patti B]

Dear Nyka-

No, I did not just want to hear from survivors - maybe caregivers and friends of survivors can give me some insight into how they feel and in turn make me better understand where my family and friends are coming from.

You must be a special person to be able to write the post you did - not everyone could do that. Your honesty is wonderful!!

[MsC1210]

Dear Patti

You and I have discussed this topic and I just want to add to what I already said. You are AMAZING! The things you are doing for Nick and for Joe and yourself are nothing short of incredible.

As I mentioned to you, and I will share it in brief here as well... Sometimes we as caregivers just get so overwhelmed with cancer that we need a break. When we take that break there is often times such a sense of guilt that goes along with it. I think in our heart and soul we just want so much for you to be well again that we turn off that part of our brain that knows how sick you are. A defense mechanism of sorts....

Now, come on, let's get dessert! lol

Hugs

Christine

[LolasDaughter]

Hi Patti,

I just had to thank you for what is probably a wise warning to me (and my family) as we are just starting on this journey with Mom. We are still in the 'overwhelmed with help from everyone' stage. Which is great, don't get me wrong. But what a wise reminder to be mindful of as we get further along and help from others may change.

Hugs to you at yet another stage in the journey,

Nicole

[Welthy]

Patti,

I've pm'd you.

Hugs,

Welthy

[Connie B]

Patti, having gone through lung surgery and now heart surgeries over the last 4 years, I can relate to what your saying.

What I disliked was when friends or family would say they were going to do something for me, and then never did.

My first open heart surgey my girlfriend who lived 2 miles from me and has been my friend for over 40 years, said she was going to make a hotdish and bring it over one night. SO that night my hubby who had just gone back to work that day after taking good care of me for over a week as I recovered didn't cook dinner that night. Well, low and behold my friend didn't bring dinner over either. I had a LOT of false promises and that was hard for me.

I have heard this same thing from other lung cancer survivors. I use to be an ALCASE PHONE BUDDY and I honestly heard this same story over and over again.

I think you and I could chat for hours on this one. I'll PM you my number.

((((((((((((((((PATTI)))))))))))))))

[J.C.]

Patti,

You are right, as soon as somebody

looks healthy all promises made are

forgotten, could be a way to learn

what real friendship is about.

We had to clear the deck of those

''friends'' years ago, but luck was

there and we met better people that

took their place.

We put a sign with

QUARANTINE

on the door,

the phone never stopped, those friends

that had forgotten us were calling to

find what was wrong.......

we just told them they were the ones that

put us in QUARANTINE because they had

left us high and dried with their empty

promises........

Hard to understand but that is life

when you are sick and have the look

of health on your face.

You will meet new people and be better

of than you were.

Wishing you the help and understanding

you need.

Hugs

Jackie

[recce101]

"J.C." ...Hard to understand but that is life when you are sick and have the look of health on your face.

I think that's the basic reason. Most of us respond quickly and with great generosity when a friend or relative suddenly encouters a family emergency or health crisis, but when it appears that they're doing "okay" we tend to turn our attention to the next thing or person in need. We never seem to have the time or resources to meet every need we see and have to set priorities, often imperfectly.

Now the people who make definite promises and don't follow through, or can't accept that someone on chemo can't take care of their sick child even when it's been explained to them -- they're in a different category entirely and I won't go there at all.

A complicating factor is that we tend to put our best face on for others, possibly with the exception of immediate family. There are many motivations for this -- our realization that others with far worse infirmities than ours are active and even cheerful, our desire to appear strong and worthy of respect, our need to be a positive example for others just starting on this path, the knowledge that positive expectations and a good attitude are themselves therapeutic, and many others, all valid and commendable.

So if we're in the "good face" stage, what can we do? [This is generic, not custom designed for Patti B or me or anyone else.] (1) One thing, difficult for many, is to be assertive and clear about what we can and cannot (meaning "will and will not") do. Friends will graciously accept your explanation, and those who resist can be crossed off your list of friends, at least for now. (2) Try to repay, somehow, to some degree, those who were most supportive in the early weeks. Do something within your capabilities, something a bit original, something that shows you've been thinking of them. (3) Don't wait for others to call, make the call. Express an interest in the other person, ask how they and their family have been doing. When the conversation gets around to you, be candid about your condition, your side effects, what may be next in store for you, in a matter-of-fact way without dwelling on it and without displaying a hint of self-pity. Some people will truly be blown away by this! As you're talking they'll think about their own problems, realize yours are much worse but that you're handling them well, and the proverbial light bulb will go off.

Well, the Tarceva Kid has to make his one sun-baked outing for the day, this one to Wal-Mart. Aloha,

Ned

[teriw]

Your story made me feel really sad. I think a lot of it is being human, and that yes, people do actually forget on some level. I think with your husband it might be more of a denial thing. Perhaps with your family too. I'm sure I had that with Bill, and I know other people in our life did. They (your family) probably can't even deal with the possibilities. (By the way, I'm not saying that makes it okay at all.)

I think you're probably always "the strong one," and people will always see you as that. You'll have to remind them when you're not so strong and need their help. And you'll probably have to be the one to bring up sensitive topics.

Your neighbor with the babysitting thing -- okay, she needs a bucket of ice water over her head to wake her up.

But I'm thinking maybe order pizza for Thanksgiving -- that might give them a hint!

[tjrasMOM]

Patti -

I had just read your response to me about my mom in the Family and Caregiver's forum and liked what you said. After I read posts there, I came over here...I've never read posts on this forum before. Today was my first time. I started reading your post (not knowing it was the same "Patti" who responded to my post) and got tears in my eyes. I felt an instant connection with your post because I wonder about this all the time with my mom. Everyone was so concerned and helpful at the beginning. And to be fair, they still are. But whenever I realize that she's taking herself alone to many appointments, I realize that her fear has NOT changed. She still has cancer....and even though she is not suffering from the infection, shortness of breath and vomitting she had at the beginning, she still has cancer and still must think about it every day. If I don't call her for 1-2 days or stop by when I go grocery shopping (we now live 5 blocks from each other), I feel so guilty. I feel that every minute of every day is precious.

My mom's first cousin had prostate cancer a few years ago and this summer he told me something that always rings in my head. No matter how much people do for her, help her, love her and support her....she is still all alone in her thoughts. She is the only one who is scared and who has the cancer. No one can understand what she is feeling. His message was that no matter how much I love her, I don't know how she feels every day....and that we all just need to respect and appreciate that while trying to support her.

But I thank you for your post because you have confirmed my "wondering" thoughts.

I will remember to never forget.

[Jyoung20]

Okay Patti,

You and I are on the exact same page here. I can totally relate to what you are saying. Have you ever read, "Crazy Sexy Cancer". If not you should take a peak. Cause Kris Carr is the first person I know to address these issues in print. It is a very good book. This really helped me to relate to alot of the survivor-emotion issues.

My best friend of 24 years and I hardly speak, she said that I was too judgemental cause I didn't want to go and party like a rock star with her e4very night. Certain members of the family would tell me to quit pulling the cancer card... I tell them that if they get cancer (and I pray they don't) that they can pull their cancer card too... You should try pulling it, it does come in handy sometimes especially when insensitive neighbors want you to baby sit their sick child. Hello!! I have cancer!!!

Hang in there girl and keep your spunk!!!

Attitude is everything!!!

God Bless!!

Jamie

[fight]

Patti,

I think you hit on a very important topic. I too see myself in your post. In the beginning the phone rang off the hook and people wanted to do anything they could to help. Recently one of the mother's at my childrens school said to me "I'm so glad that the cancer thing is behind you. You went through so much." I wanted to say "Hello!" I still have cancer." I don't remember what my response was but I remember being shocked. I think people automatically assumed that when my hair grew back in that the cancer must be gone. I guess I've realized that no one can really understand this unless they or someone close to them have been through it? Cancer is such a tight rope act. I try not to let the insensitive comments bother me. Just the other day a fellow mom from my daughter's pre-school came up to me and asked me about my cancer because she had just heard about it (my daughter just started pre-school this year). She wanted to know what kind and when I told her my story she cried and said "your children need you." And then she asked if there was anything that she could do for me. There are so many angels I have met along the way in this journey. They completely overshadow the insensitive people that I have encountered.

Take Care,

Rachel

[Kasey]

Isn't it great that HERE we all get it!!!! I have many stories....too many to tell. Maybe just part of one. Four of my oldest and dearest (I thought) friends would NEVER ask how I was, how my chemo and/or radiation was coming along. NO mention of cancer at all. BUT were quite judgmental when I didn't go to the theater with them or out to breakfast, lunch, or dinner....whatever they were doing. This was early on when I was given only a few short months to live. One actually said there was no reason to not go out to eat. Of course, due to radiation I COULDN'T eat......but she didn't want to hear any part of that! One comment was I only would talk about cancer. HELLO.........I'm supposed to check out in 2-3 months. Yes, I will talk about cancer.

At any rate, I am doing okay now with good checkups and I don't mention it at all anymore to these girls. I call them my 'fun' friends. As long as I am just like before (or act as if I am), having fun, doing all the fun things we all used to do ~ we are good friends. Little do they realize that I am not at all like I used to be ~ probably none of you are either. But I guess it makes it easier for them to believe we are all the same. I'm not sure they even notice, or if they do they don't seem to care or be concerned enough to ask. Others who were not long or close friends stepped right up and really were more supportive than I ever could imagine. We really learn some difficult life lessons as we travel this path, don't we? I'm glad there's opportuities like this to just get some of it off our chests.

Thanks.

Kasey

[Don M]

Hmmm...now that you mention it, I guess I have noticed a cooling down as it were. After all, it has been 4 years and I guess it is kind of old news to my siblings now. The last update I sent out to them did not engender much response, while my previous updates did. It does not bother me much though. My spouse and children continue to be supportive as always and when people in my area ask me how I am doing, I tell them am still alive.

You know, I just remembered that I had a coughing fit in my front yard the other day and my nearest neighbor called me up to make sure I was ok…pretty cool, eh? I live in a rural area and cannot see my neighbors’ houses. I must have bee coughing really loud.

[ursol]

Patti,

I guess I have been pretty lucky so far as the only one insensitive person in my life has been the same way from day one to the present so I just decided not to spend any time with that person and only have to see that person when it is a family requirement. I've basically cut her off.

Everyone else in my life, friends, co-workers and family continue to offer to help although as in the beginning I take limited help as it is good for me to stay independent. My best helper besides my mom is my Aunt who comes over several mornings a week and helps me round my kids out of the house and off to school or grandma's. I don't know what I would do without her and she never seems tired of helping so I try to buy her nice gifts when I can to show how much I appreciate what she is doing. (she also makes my beds and straightens up while she's over).

One thing I have done is insure I am always clear with people. I have no problem telling people, "I'm sorry but my counts could be low so I prefer you don't come over with your sick children". I don't wallow in self pity but I do not let people forget that I have advanced lung cancer and am in treatment now and probably forever and if they want to hang out with me then they should get used to it.

Hugs

Lilly

[daggiesmom]

Yes, cancer does wake you up as far as friendships go. It made me very aware of who are "friends" and who are "acquaintences." Many people see a person who was sick a long time ago (5 years) and figure I have beat this thing. I pray I have although my oncologist has never come out and said "you're cured." I have many medical emergencies in those five years and people who I thought would step up to help me and my husband never did. I was, and still am, very hurt by this. I try not to dwell on this, but, sometimes I do feel betrayed. My husband has been my true friend. Had he not been around, I really don't know what would have happened to me. I think many people have a fear that this could happen to them and that I remind them of this. So if they forget about it, that threat to them goes away. Makes me very sad sometimes.

Joanie