Disconnected...

midoubi

Recently I feel disconnected from the rest of the world.

From my job, from my friends, from my husband, from anything else.
I think I am having my post-cancer treatments depression, again.
Why do I have to be undergoing infusion; throwing up; getting burn by radiation to receive attentions?
People are over with "my" cancer. They have moved on. But I am not.
No one want to talk or hear about my cancer anymore.
You are done. You are cured. You are being paranoid. They said.
I made some new friends. But as soon as I started talking about my cancer, they disappeared.
So I guess I can only talk about having fun and happiness, huh?

I am trying to make people understand why I am having a hard time to adjust to the normal life.
In order for them to understand, I have to bring up my cancer experiences. (It is sickening, but I have to admit, I want more love and attentions when I tell people I have had cancer.)
Then they gave me this "I am so sorry" look.
Then they say, but you are all good now.
Then if you want to talk more, they start to get bored.

I am in a weird psychological state. I feel neglected. I feel ignored.

I am annoyed.

Thanksfully I still have this place to come to. Only you ladies here know what I am talking about.

Love,
Sylvia

Valsul

Sylvia

I am so sorry that you are going through this depression. I think we have all found that once we are through with all of this most people expect us to react like we had a broken arm or something like that and can jsut bounce back.

There are three things which I have resolved to do which have helped me.

1 I don't speak about my cancer to anyone, but I will answer their questions. Then I ask about them and what's happening with them

2 I go to a counsellor and just talk to her. It's her job, so I consider that she can get all the rough stuff instead of family and friends.

3 Come to these boards where I can find my bc sisters who have all been through what I have and when I feel down someone is there who can lift me out of the doldrums.

I think the first thing you do is to get some counselling or therapy organised. That way you don't frighten off your "friends." It's a big deal to us, but after a while I guess it's just a bore to other people who haven't had the extremes of fear, angst and painful tx.

Sending you a big hug (((Sylvia)))

VickiTN

Sylvia,
Do you attend a local breast cancer support group? I've found that support groups can be immensely helpful.

Like Valerie, for the most part, I've stopped talking about my bc with anyone, except for survivor friends that I know. Because unless someone's been diagnosed with cancer, they really don't get it - and, there's no amount of explaining or talking about it to them that will get them to understand how it feels.

Something else that I'm doing that I believe is helping me is that I am pouring myself into volunteer programs. I'm the Survivor Chairperson for this year's Komen Race for the Cure in Memphis. And, I'm working with my surgeon to develop a volunteer support program at his office. I've found that volunteering in ways to help survivors and/or raise money to help find a cure for bc, is helping me to channel all my negative energy (worrying/anxiety, etc.) into something positive - and, working full time as well, it seems I don't have as much time to worry anymore!

But, I do know where you're coming from right now....I bounce back and forth with my ability to "move beyond", but, so far, this volunteer approach is working for me.

I'm sending prayers up for you and praying that you'll find peace and comfort. And, of course, you'll ALWAYS find love and support here!
hugs,
vicki

threadbear

Dear Sylvia,

I am so sorry that you are going through all of this. I had many moments of this earlier this year, and also wondered if my family really understood all of this. The truth is they don't until they have to deal with it themselves. That's why I come here almost every day. It makes me feel less alone.

After I hit my one year anniversary in May, I decided that I could have been either stage 4 or dead by now, so from here on out, it's all gravy. Other survivors know how I feel, but when I am asked, it's always " I HAD breast cancer- I'm now in remission! I'm a Survivor!"

I still occasionally have a day or two that I feel scared, but I just wait until it passes. Doing charity work has also helped me. I sew knit hats to donate to the chemo clinic, got involved with the Relay For Life, and am planning to donate a quilt for breast cancer research.

I hope you find your "new" peace soon! We all know how you are feeling!

Laura

Anonymous

Sylvia...I too have periods like that and have found that trying to force myself to snap out of it only makes it worse. You're doing the right thing by venting here. Just keeping a little busy and focusing on helping others is pretty helpful to me in my effort to get out of my own head for awhile. And knowing that "this too shall pass" keeps me hopeful.

Marin

wallan

Sylvia...


I understand how you feel. I too feel the same way about wanting people to be more compassionate about my state of mind.
Because, well, I am still dealing with cancer. Everyone else is not. My family and friends don't want to hear about it. They have moved on. They don't get that I still am dealing with it all. And I wish they would be more compassionate. I really do. But they don't get it.

So, it can be a lonely journey. I agree with the other ladies. You need to speak to a counsellor or join a support group and come here and talk about it. Don't even bother your 'non-cancer' friends anymore. They will never get it until or unless they too have cancer.

HUGS
Wendy A

Toronto

Call me cynical, but I say they aren't going to understand, explaining to them is like trying to explain blue to the colour blind. Counselors are good, they've heard it all before, or if they haven't they're at least interested. Support groups are good, everyone there is in the same boat - I haven't done one on this round but it was great on my first BC. On-line groups are good too, perhaps the best because you can speak (write) when you want to and people can reply at their leisure.

One thing that hasn't been mentioned is journaling. I kept a computer diary for a while and that was decidedly therapeutic. I could swear and rant to my heart's content. I could complain about my husband's lack of care, my kids, my friends - OOHHH I had a good time. When you have a real head of mad on it's better than here because you don't have to hold back.

There will be normal for you again, maybe not the normal you had - but a state of equilibrium.

Take care

roseg

Marin is right that you can't force yourself to feel better. It takes time.

But try to get out. I found that my interests shifted. I quit doing things that I was doing, but my heart wasn't really in it anymore. Cancer was a good excuse to get rid of those things.

Three years later I find that I have some new interests, and life is seeming much better.

Shirlann

Hi sister, almost all of us have Post Traumatic Stress Syndrome, to one extent or the other. You feel like you are behind a glass wall and everyone else is laughing, eating, dancing and you can't join them. It is horrible and most of us have this to some extent.

Cancer just does not go away like the flu. Especially when we always have the sword of recurrence hanging over our head. Families are notoriously bad at helping. They think if they are cheerful and off-hand, you will "snap out of it". Doesn't work that way.

Your body and mind have been deeply insulted and scared. Both parts of you have been through the wringer. They will decide, not you, not reason, and certainly not other people, when you can enjoy life and laugh again. When the two of them get good and ready.

We all like to think we are intelligent, logical, sane. We all like to think we can control our emotions, feelings, etc. And, usually, we can. So we are spoiled. When something this catastophic occurs, we say, "Okay, I accept this, it is hard, but I can do it". True, but your mind and body have ideas of their own that you cannot control.

So, if you are not already trying anti-depressants, try them, they are a huge help. If you are on one, up the dose.

In a year or two, you will get your confidence back and will gradually regain the upper hand on this. It just takes time.

Come here and post often, this is the place where others have walked the walk. No one else has a clue.

Gentle hugs, Shirlann

nosurrender

Dear Sylvia,
I believe we all feel that from time to time. That is why this place is such a God send. We are among fellow survivors who just KNOW what we are enduring and all our fears and pain.

If the people in your everyday life don't "get it" then come here. We will understand even before you say what is on your mind.

With this sisterhood behind you, the outside world understanding doesn't seem as important.

Hugs to you my sister.

g

rumoret

Sylvia,

I am here writing because I feel like you do. My family is back to their regular routine......ignoring their own medical problems. I think my breast cancer dx took my sisters and nieces through the wringer. It questioned their own existence........since I could get Breast Cancer......now they could possibly get it. I only hope they are not avoiding me because of the Breast Cancer. One thing that they all have changed doing was calling me to discuss the latest drama in their lives. As we say in our family, "SAME OLD SH#T OR SOS."

So I am thinking that getting on with their lives is a good example for me to follow........I need to get on with mine. This August 17th will be the one year anniversary of my last TAC treatment in 2006. I am trying to cut back on my Ativan (slowly) and this week I have had less aching in hips and back.......so my attitude is improving. I come to these boards to respond to sisters like you and to just read the latest news or humor. I don't belong to any support group.......but at times I wish I had more women to talk to locally.

So I understand how you feel about trying to make people understand why you're having a hard time to adjust to the normal life. My husband knows my deepest fears and he is the one I share with the most. My mother who was dx in 1999 also understands....but I try not to discuss breast cancer with her much because she is really in good spirits and is busy living her life...she is 77 years young. So here I am daily checking out breastcancer.org.

Love,
Terry

Fitztwins

After a good year after 'active' treatment (not counting herceptin). I was consumed. Consumed with fear. I would surface and then I would have an ache or pain and it would surface.

These boards were my life line. Someone said, you can't worry away the picnic of life thinking that it is going to rain. We need to enjoy the day. The life we have.

And I do, 20lbs later I do!! I refuse to waste my life. If I have 2 years or 20 left, I am going to arrive in style and worn out!

I am not a pollyanna or trying to blow sunshine up anyone's rear. I am 2.5 years out of diagnosis. I have seen sisters lose the good fight on this board. I bet everyone of them would say "enjoy your good days". Worry and fear is what tears down the quality of life.

Hang in there!

Janis
by the way, I was diagnosed Stage IIIC.

Chattypatti

Keep coming to these boards whenever you need to. We truly know how your feel. Everyone has given a lot of great advice so please hang in there. Some days it hurts to think about it, but good days happen. I found journaling to be very helpful. If I wrote it down, I stopped thinking about it and felt better. Do whatever makes you feel better and forget about how others think of your cancer. ((((HUGS))))
Patti

SWANKETTEGAL

That is the word I have been trying to come up with when trying to explain how I am feeling.............it has come on gradually but it definitely is there............I think I was really doing pretty well but my last visit with the onc my tumor marker had gone up quite a bit, although still in normal range so I have to have it recheck this Mon.....of course, I have gone over every scenario in my mind and to be truthful I am just sick and tired of it all. I know that is how most of you feel at times so that is some comfort but I would love to wave a magic wand and my life be okay again. I do try to make the best of each day and find all the joy I can get and give in it.......
It is a lonely journey though...............

Jorf

Sorry to hear you're having a hard time but this is certainly a good place to come about it.

I have a therapist and a couple of good friends I can talk about it with if I need to.

What I'm finding is that it isn't so much the cancer itself that's influencing me but how it's affected my life, the changes that I've made since then. I can talk to anyone about those and not bring up the word "cancer" that might make someone uncomfortable. I'll sometimes say, if I need to to make the context fit, "after last year" and they know what I mean without having the emotionally laden word. And because, for me, it's not so much the cancer that freaks me out as the extent to which the treatment influenced and changed my life.

Do find a therapist or a support group or one person you can say "cancer" to.

jorf

Anonymous

OK, this might illustrate a bit of what we're talking about here...I was in the break room at work yesterday, discussing trying to increase water intake with a co-worker. I said that I was just beginning to like the taste again after having found it so repugnant during chemo (bringing up the cancer topic ya know). She turned around and walked away......I swear!

Marin

hopeful1

I am almost 2 years out, and reading these posts has been a source of comfort for me. I have been feeling the same way and just couldn't understand why.

Shirlann - your post especially hit home with me. Thank you for your insight.

I had a strange thing happen to me last night. A male friend of mine lost a bet and had to shave his head. When he took off his hat - I actually had a wave of naseau come over me! I have seen many bald heads in the past few years - but for some reason, that one took me right back to my chemo days. I was almost in tears and I had to walk away. I felt silly sharing my feelings last night. It feels good to share them here.

rumoret

And then today on Good Morning America......a beautiful story about couple who are definately in love. They live in Washington State...along the ocean, retired....life looked great. Then the husband found out he had ALS and his loving wife still by his side taking care of him. Then she decided to run an ad on Craigs List, and asked people to bring the world to him. Hundreds of people brought a part of their lives into his house to share with him. I CRIED AT THE BEAUTY OF THIS COUPLE, HUSBAND COULD ONLY BLINK HIS EYES, BUT HE UNDERSTANDS EVERYTHING.

Wow......I was so inspired but this couple and his COURAGEOUS battle. I have a lot to be thankful for TODAY.....and I better start enjoying TODAY......because that is all we are guaranteed.

Love,
Terry

Shirlann

Oh how lovely, Terry, and we all thought we had it the worst. That dang ALS is so awful. Happens young, no cure or even any treatment and worst of all, your mind is 100%!

But they must both feel so loved and blessed, what a wonderful community.

Hugs, Shirlann

midoubi

Thank you so much my dear sisters. Your kind words brought me to tears. Thanks for letting me feel I am not alone.

The strange thing is, the first year after I finished treatments, the last thing I wanted to talk about is cancer. I desperately want to feel normal. Honestly for a long time, I didn't even want to come here. I was in self-denial. I wanted to pretend nothing has happened. And now 1 year out, I want people to "remember" I have had cancer. What's up with that?! LOL

I have registered for both Race for the Cure and 2007 Dallas/Ft. Worth Breast Cancer 3-Day. I haven't really started doing fundraising and training. I should start getting into that to keep myself busy!!

Thanks for all of your suggestions and support. I cannot express enough how much you ladies mean to me!!

By the way, the consellor you guys mentioned, is it like a psychiatrist?

iodine

Not really a psychiatrist, but a psychologist or social worker who provide talk therapy. Most of us find these the most helpful. Many psychiatrists don't offer a lot of talk therapy, but a lot of medical care instead.

midoubi

Hi Dotti,

Thanks. But where can I find a psychologist or therapist? I talked to one when I was in college at the student health center. But I don't know where can I get one. Do I need to go see a doctor or something?

roseg

A referral is good, if you know anyone who has had problems and seen someone. If you have any friends who are "in the business" you could ask them. Someone who is a therapist, nurse, social worker. You minister might have some suggestions as well.

I'd had my son to the therapist that my HMO provides and found that to be impossible because you couldn't get an appointment at a predictable/regular time. I put up with that because he was on ADD meds and it was convient to get the scripts from them even if the therapy wasn't so useful (he was difficult I think any therapy wouldn't have been useful!).

When I went looking for one for myself I decided I wanted to be able to see the person at lunchtime near my work. I picked up a local funky kind of newspaper and went through the professional listings in the back until I found someone who had a Ph.d and an office near my work.

She worked out really well for me, and it turns out we both belong to the YMCA.

Anonymous

Sylvia...We have a counselor (masters-trained only) as part of our oncological team at my breast center, but since we're also university-affiliated and have a medical school with plenty of faculty, a full array of counseling and psychological services is available to patients who want a PhD-prepared or MD professional. Can you ask for a referral from your oncologist or find someone at the university hospital in Austin?

Marin

iodine

Or you can seek a clinical social worker in private practice. Your primary care doc, plastic surgeon, surgeon, breast surgeon, onc. breast clinic, any should be able to refer you to several names and you can choose one. If your personalities "fit", meaning you feel comfortable with that counselor, good.
I feel that a person should commit to 6 sessions with a counselor unless they are not comfortable with them. Then they should move to another one just like they would to another doc they were not comfortable with. I also think that a good counselor can ans. whether they think you can consider long or short term therapy after a few visits.

roseg

I've never heard anybody say "6 sessions" but I think that's a good idea.

I attended a bc support group at my hospital, which I thought was pretty useless, but I did stick it out 6 meetings.

LizFL

I don't think people realize how much the cancer and treatment becomes a part of our lives. We go through a lot of fear, trauma, pain and the myriad of other side effects, losing our hair, etc. For me it took almost a year out of my life and another 6 months or so to recover from the fatigue and just general worn down feeling. I don't know how you are expected to just ignore that period of your life.

When we are on the road to recovery, people just don't want to hear the "C" word....I find myself referring to "when I was ill"...like I had a very bad cold or something. It is much easier to discuss my feelings with someone who has been through it...because they understand. I went on anti-depressants after finishing treatment and they have helped a lot.

Liz

Valsul

Marin,

That is a perfect example of why we come here. I can't understand why she had to walk off on you that way - but perhaps she is afraid to think in those terms. Despite the news coverage of the success of treating cancer over the years there are still some people who are so afraid that they won't even stay and listen when you are celebrating a small step back on the road to "normal."

Big hug - we would never walk away.

Anonymous

You're so sweet, Valerie. Women like you are why I'm still here!

Marin

wakebrat7

Sylvia:

I totally know what you mean. Nobody wants to talk about it with me anymore. They act like I'm whining, living in the past, etc.

Nobody will ever truly understand what we go through even years after treatment. The psychological trauma will stay with us for years. The fear will stay with us for years.

I have a breast cancer buddy who went through treatment when I did and you know what, I thank God for her. She is the only one who still lets me whine and complain. Oh, and of course, this site, it really saved my life and I'm still coming here and venting till this day.

I have two friends who are dying from cancer right now and you know what, I could sit there and listen to them for hours. They love me, because they feel that I am the only one who truly understands them. It feels good.

Hang in there. People are so ignorant and totally clueless. Unless you've gone through something like this, they will truly and fully never get the picture.

Lillie