Life After (warning, this is pretty raw)

[KatoKiller]

WARNING: This is not a happy, sunshiney, positive outlook sort of post. If you are easily offended, then look away

That being said, I'm finding that I'm having a really hard time some days, even though I'm doing the NED dance. There are literally times when people have said to me recently, "you're alive, you lived through this, and you should be grateful" that I have thought, am I? Am I really lucky if this is what the new normal is like? (Yes, I have talked to my shrink about this).

I was talking with some friends at book club last night, and telling them that there's all sorts of information out there about what NHL is, and tips for chemo and life during chemo and diagnosis and staging and all of that.

The thing is, there's not a lot of information out there about life after you get the "all clear" and that's the part I'm having the hardest time with. When the crisis is over and all the celebrating is done, and everyone thinks you're going to go back to normal.

The thing is, you're not "normal" anymore. Everything has changed: your world view, your support system, your body, your mind, and of course, the worry that it might come back.

This is the information I want to read. I want to hear other people's stories about the year after being given the "all clear", about the years that follow that.

Do we ever quit worrying? Do we come to terms with our loss (our former "normal" self)? How do we handle all of those "bargains with God" that we made? How do we get over feeling like we're being self-indulgent by doing nice things for ourselves?

I read little blurbs here and there, people saying things like, "I wouldn't change having had cancer for the world" and I think to myself, "oh hell, I would in a hearbeat." I also have heard of people who say, "Cancer got me involved in giving back" or things of that nature. Well, I'm not real civic minded. Cancer didn't change that about me. It didn't make me all super greatful and it didn't really bring me closer to God.

I hear people say, "everything happens for a reason" or "there's a lesson in this" and to that I want to scream bullshit because I don't believe that for a minute. I was a good person before cancer, and very happy and appreciative. I didn't need a freakin' lesson, or something to remind me how wonderful my life was.

I'm angry now, and I feel robbed and completely pissed at the universe. And this is the stuff I want to read about and hear about. Not all of the Suzie sunshine crap that's out there. I want to hear the raw, ugly reality of what this is, and what it does to our lives.

I would love to hear discussion about this. I don't WANT to look at the bright side right now. I did that all through treatment. I was positive, and upbeat, and fought my ass off. Now I'm tired dammit and I want to moan and groan and bitch and greive the life I had before.

I want to know that I'm not alone in being as pissed off and angry as I am.

[connie0812]

Please know that you are not alone Jaye.

Personally I think when we hear the words you are in remission they should be followed with "oh by the way you may be a mess emotionally for awhile". We are not prepared for what I have deemed the "aftermath". We're not prepared and neither is the medical field. This is also one of the reasons I'm not posting much right now, I'm a mess and am struggling everyday to make it better.

I wish I could give you some magic answer, that this aftermath crap would just magically disappear but so far it hasn't. I'm in therapy, taking trazadone (for anxiety, pain and sleeplessness) and am working hard at getting past all this crap. I'm actually considering doing "step work" (12 steps used in AA & NA) to see if I can somehow find a new normal and some balance in dealing with the fear and anger.

Just please know that you are NOT alone and that time passes with the hope that it will get better.

You're in my thoughts and prayers.

[KatoKiller]

Connie,
How is the Trazadone working? I was on it back in college (I'm clinically depressed since the age of 13, it doesn't help this crap). My therapist is sending me to a Psychiatrist next week so that we can figure out a way to medicate me along with my therapy.

Her theory is that the prednisone has messed with my already messed up brain chemistry and my old anti-depressant (Celexa) isn't going to do it for me anymore.

I'm so glad to hear I'm not alone in this. I've been seeing my therapist weekly, taking my Xanax as needed and writing like a fool.

I know that we will get through this, I just wish that there was more information about it out there.

[Ferniek]

I have never been told I have NED, but I did hear the words remission once. I did not know what to do with myself. There was an empty feeling in my body where the fight once lived. I did not know how to handle it so I ignored feeling good. I did not do all the things I said I would if I felt better. All those bargains I made I just did not keep. If God has a score card I am in trouble. Sure I was going to eat good food, find friends and fill my empty life. It did not happen. I ate whatever I wanted to, how did I know if it was going to last or not. I lost friends because they thought I was fine and they were tired of cancer. My empty life grew more empty with my separation. This new normal is not what I bargined for and I want some peace.

I really think you are grieving just like with a death. I think you have to go through the stages. I wished there was a pill to get thru the anger. I do not think you are raw, just being real. I think many of us have these moments. I know I just don't want to show the really dark times because I think I do not want to be the one that brings others down. But this side is part of the damn disease. The part of getting well. You need time. I know another saying that time heals all. But I think that it is right, at least I want to believe that.

I agree with you "I wouldn't change having had cancer for the world" and I think to myself, "oh hell, I would in a hearbeat." I would in a heartbeat if the cancer hadn't hurt the heartbeats also. You are not alone I just don't have the energy to be angry as much as I want to. I can't live whatever years I have being as down as I want to be. Cancer has taken alot from all of us, even if it was easier for some. I just do not want to give it any more.

Grieve, kick the hell out of something. But keeping moving forward slowly, hell girl you deserve it. I do understand. I wished I had great words of wisdom and could say them proper, but that is the great part of this forum others can. I know there is support here.

[connie0812]

The trazadone has helped. I fought taking it for months Jaye. What it's really helped with is my anxiety.....that was out of control. So is my fear about relapse, but it helps keep it at bay. I only realized recently how angry I am....it sucks as you well know. What the hell are we supposed to do with the fear and anger????

At this point my conclusion is DRUGS!!! I know that won't sit well with some, but at this point finding someway to deal with all of this is imparative and only taking it is a temporary fix, but it does help. I'm also sleeping better, but still have pain everyday all day long.

December 12th when I found out I was in remission I left the doctor's office and our car was hit by a gasonline tanker truck and pushed down the hwy sideways for about 200 yards. It added to my fear and my mortality slapped me in the face once again. The end result has been a horrible fear of driving. This makes it real tough to go to support meetings. I do push myself.......

What I find the most frustrating is the contridiction of it all. Being forever grateful that I am alive, feeling like I should be doing something meaningful with my life and living with constant fear that every ache and pain is leading back to cancer. IT JUST TOTALLY SUCKS

[susy6655]

I feel just like you do, I have tried to research things out there to help with the new normal and frankly I come up empty most of the time. There is a book and I think it's called "Dancing in Limbo" and it's about people who face life after cancer and the fears of it returning......I plan on getting it.....I also thought about starting my own local support group for people in the "New Normal" ....it would be nice to be around people that are on the same "Page" as me..... also being single I have found it hard to date.....men seem scared to want to commit to someone that could possibly relapse... ...I just feel stuck.... I do understand how you feel...

Hugs!

[KatoKiller]

I know EXACTLY what you are talking about Connie. My one caveat is that I'm not super scared of it coming back. I know that my chances of that happening are slim, according to statistics. But then, I'm a firm believer that we can manipulate stats to make them say whatever we want them to so what does that help really

I'm just so glad to hear the Trazadone is working for you. My therapist talked a little about Cymbalta to me because I am having a lot of pain in my hands and feet. I'm a little nervous about it though, a friend of mine's mom is on it and having a really rough time.

[Judy_smile37]

Hi Jaye,

This is incredibly normal. When I enlisted my psych at dx time, she warned me about it. She said after chemo, people start to deal with the emotional toll it has taken. Up until that time you are just trying to get through the chemo. I also joined my support group at that time. They said it was very very common for people to join after the big battle and when you get to the emotional battle.

Let me tell you. You do start to develop skills to handle it. It does get easier with time. Just like the chemo, you will get through this.

((((HUGS)))),
Judy

[KatoKiller]

Where did y'all find your support groups?

[belcanto]

Oh wow.

At some point or another, I have said or thought every single thing you have expressed here. Sometimes I still do, even after more than 11 years.

This is how I see it:

- During treatment, you are entirely focused on getting through treatment, dealing with the side effects and getting through each day. There is not a lot of time or emotional energy to process what it all means. Often it doesn't hit you until later, when it starts to sink in.

- There is a certain amount of pressure to be upbeat and optimistic. To some extent, we place this pressure on ourselves; no one wants to be a whiner. To some extent it is placed on us by other people, who want to see us happy and who maybe don't like to face the raw emotions that come with having cancer. Over time, this pressure can really build up, and I'm not sure it's emotionally healthy for us.

- I think very few oncology programs really prepare people for making the transition from treatment to what comes after. Too often it is vague and sugar-coated. Hard words such as "anger" and "depression" and "grief" are often avoided, and the rawness of what we feel can take us by surprise. Often we are forced to bottle it up, and when it finally explodes, it's a little frightening.

Eventually it does get better. You get to a point where you begin to integrate the cancer experience into the rest of your life. It gradually stops consuming your entire being. You begin to accept both the sunlight and the dark side and recognize they are two aspects of the same thing. I can't tell you how long this takes. It's different for everyone; it just takes as long as it takes.

I thought I was in control during cancer. I thought I was handling everything just fine, including a nasty medical error that the onc handled like a total horse's patoot. I wasn't gonna let anything faze me. Well, three months after completing radiation therapy, I completely lost it. I was screaming and crying and throwing things, and probably scared the heck out of my cats. I don't know what happened; I think I just exploded from holding it all in for so long.

I can't say it was a turning point. I continued to feel bad for a long time and I still have moments of anger and anxiety and all the rest of it. I think that's OK. This is an intense experience and we can't help but be changed by it.

How you change is up to you. But I think you have taken an important first step: You're not afraid to acknowledge the dark side and talk about the anger and grief you feel. You're starting to integrate all the pieces, and I know that some day you will be a whole person again - scarred and dented but still a whole, wonderful, beautiful person.