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Well, I am here

heisenberg
Posts: 14
Joined: Feb 2016

I was diagnosed Feb 4. I posted here at the end of February, and now I am posting again. 

I'm about to go through my fifth major chemo treatment this Thursday. It's become routine, unfortunately. 

By far the hardest part of this has been the emotional turmoil I have felt. It is so very difficult to get up every day, go to work, and interact with "normal," healthy people. For the first two months after the diagnosis, I had terrible, nightmarish anxiety every day. 

Emotionally, things are beginning to even out a bit now. I had a great day yesterday and today is okay, not great but not terrible. I have been sleeping heavily for the first time in months, these past few days. 

I see a social worker every week who more or less acts as a therapist. She tells me what we go through in the first couple/few months is reaction to TRAUMA. I hadn't thought of it before, but getting a cancer diagnosis is indeed a trauma-inducing experience, a true traumatic event. Hence, there are all the sorts of symptoms one should figure people with trauma suffer from. 

Since discovering how trauma might apply to me, I have been doing some web investigation about it. These sites describe what I am experienced/have experienced, emotionally, spot on:

http://www.helpguide.org/articles/ptsd-trauma/emotional-and-psychological-trauma.htm

http://www.psychguides.com/guides/trauma-symptoms-causes-and-effects/

Notice how in the second article anxiety is listed as a major symptom of trauma. This was certainly the case for me!

Another thing that my social worker told me, and which seems to be true in my case and may be true in may cases of trauma, is that when we are given bad news such as a cancer diagnosis, and slip into trauma, we tend to dig up all sorts of other traumatic events from deep in our past and relive them again. It's somehow the subconscious trying to make sense of this new thing. That again was very much the case with me. I have dug up so many events in my past, my childhood, that I'd long suppressed. (My childhood was not that happy, with an alcoholic father.)

It's not good to dwell on those memories.

The good news is that the subconscious adjusts and after a time, the trauma starts to recede. I am noticing that I am at that stage, now. You begin to accept the fact that you have cancer and begin to emerge from The Daze. 

A permanent colostomy bag is in my future. Though the surgery is months away, I am having difficulty fitting this in with my current conception of myself. My identity is going to have to change, if I am to accept this--which I will. Identity-changing is difficult and painful, however. They say that the best thing to do is concentrate on the present. Which is probably very wise advice.

Anyway, I am rambling, but I wanted to type up a bit about what I am experiencing in case others can find some comfort in similarities. It's helpful to know that you are not alone. 

One source of outlet for my nervous energy: I am writing a book about my experience. I have six or seven chapters so far. I am not sure anyone would want to read it, but it gives me some comfort to type it all up. 

Thanks for reading. I wish that the burdens placed upon you are light. That's not always the case, but then again, it's a wish--more like a prayer.

 

 

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I'm sorry you're going through such emotional turmoil. I think the experience is similar for everyone but we come out of it in different ways. Like any other negative event it gets easier with time. My thoughts have changed about some things in the two plus years I've been dealing with this. At first all I could foucs on was the shock. After going to a seminar on cancer in preparation for the treatments and surgery I had a hard time getting past learning how prevalent it is. I started looking at everyone with the frame of mind of 'are you next'? Or is it you? After learning that it's almost 47% of people I'd do quick calculations in my head when I was with a group. Six of us, okay, me and two others, hmm, which ones...

One of the first things that I had to deal with was having an illeostomy. I came home form the hospital and my husband was te one that changed it the first time while I stood there sobbing. I changed it the next time and I've been doing it for just over two years now. There have been times and even some recent ones where I've cried and called myself a freak for the bag and the scars and the other little issues that keep my from being 'normal'. But last year I started thinking that I don't hate the bag anymore. Previous to being diagnosed with cancer I'd spent my whole adult life dealing with IBS. I knew where every bathroom was in every public place. I had to change plans based on what kind of mood my bowels were in that day. I'd be driving home or to somewhere and could barely make it there and would be in terrible, nauseating pain until I could get to the bathroom. I was embarassed by smells and noises I'd created. That was my normal then. Now my normal is just havng the bag fill up quicker than is handy at times. But I eat what I want and never have to worry about being late for something because I'm stuck in the bathroom or suffering because I'm somewhere I have to be and my stomach is cramped up. So it's a different normal. My close friend who has terrible IBS says she wishes her doctor would give her a bag. So I've gone from loathing it and what it represents to being glad to have it. 

For the first year and a half or so when people would start to cpmplain about something and then say something like 'oh, look who I'm talking to, I shouldn't be whining' I'd say 'me having cancer doesn't diminish the things that happen to you, don't worry about it'. But over the last year or so I've changed my feelings. Now I feel like 'really, poor you, I wish that was my biggest problem. Because, guess what, I have those everyday little annoyances just the same as you do but I also have this on top of it. So enough with the whining, it's called life.'

Anyway, cancer usually just makes me angry, not sad. But I certainly do have my moments of sadness. I wish it was a being of some kind that could be tortured and shamed and killed. All I know is that we will have something to help us at some point without damaging us at the same time and I think it will be while I'm still around. Until then, f**k cancer. Go back to whatever hell you came from and leave us all alone.

What helps me when I'm feeling really down and like the battle is too much is driving my car and listening to AC/DC. :)

Jan

  

heisenberg
Posts: 14
Joined: Feb 2016

I have been listening when people say how they've adjusted to an ostomy bag, as you did, and I guess I will too. There is not much choice in the matter, of course. Thank you for telling me about your experience. 

I have an experience similar what you describe, now when I see people out and about. As I look at people in a group or on the street, I wonder what kind of ailment will someday inflict them. I think, "well, that one is going to get diabetes" or "That one I think is going to have a heart attack," depending on superficial things I see about them like their weight or whatever. And if I see someone smoking I think "My God, if you knew what I know, you would quit like yesterday." (Of course, I know it is not so easy to quit.) Young people are like in a totally different class, though, because they are so new and there is so little to go on as to what they will suffer from some day. It is a strange kind of observation that I am doing, not one I think is really healthy, and I will be glad when the impulse to do so goes away, which I assume it will.

Cancer, and I assume any serious illness, destroys one's sense of invulnerability. You're suddenly forced to face a future that is not comfortably indefinite and distant like healthy people view theirs. The thing is that everyone is in the same boat, we are all palliative cases in the end, it's just that some of us are forced by circumstances to be reminded of that fact constantly, which makes all the difference in the world in the mindset between the healthy and the ill. 

I had a funny kind of metaphor leap into my mind this morning, as I lay in bed . . . I'm on a rocket, so to speak, flying through space with a bunch of other people. For most of my life I was in the back of the rocket with the others, not knowing or caring where the rocket was flying to or through, just kind of secure in the knowledge that we were going somewhere all together.

Now I have suddenly been transported to the very tip of the rocket, in the command console or whatever, and I suddenly realize that--it's not entirely certain where the rocket is headed. It's all strange and new out there, and we're breaking into new space every moment. There's no map. There's no one at the helm. There's just going forward. And so we plunge ahead, with us few "enlightened" ones in the command console and a whole lot of very blithe and naive people in the back.

 

 

phuckcancer
Posts: 63
Joined: Apr 2016

@heis - I am so very sorry you are heaving to deal with this and my heart goes out to you, especially when the anxiety hits. It is like a drowning feeling and I know that is scary.

 

I sm sending (((hugs))) and wishes for you , for strength and peace and calmness :)

 

heisenberg
Posts: 14
Joined: Feb 2016

Thank you, it is very kind of you to reach out and empathize. I greatly appreciate it. May your burdens be bearable.

vtspa6
Posts: 172
Joined: Aug 2015

I have noticed a huge personality change in my husband since being diagnosed.  He is very depressed, hateful at times, and has said he would like to end it all.  Cancer, Neorothopy and lightheadeness has him down.  I just try to be there for him and am the receiving end of some of his 'eposodes'.  I will say it does get to me and will be visiting my sister soon to get away.  It will be nice for a small break in this cancer life.

heisenberg
Posts: 14
Joined: Feb 2016

Maybe your husband can get some anti-depressants, if he's willing. How long since the diagnosis? 

vtspa6
Posts: 172
Joined: Aug 2015

He was diagnosed July 2015.  They changed his chemo from folfox w/avastin to folfori (sp?) last treatment he had.  So I am hoping that will get rid of the neorothopy and his attitude to life will change.

fingerprinto
Posts: 11
Joined: Apr 2016

I was so thankful in the hospital when they told me I was going to have emergency colostomy surgery.  The pain of constipation for months finally was being relieved.  I was hoping not to have this surgery but the relief was well worth it.  I have had the "bag" now since late January.  It has taken some time getting used to having it but I like to humor myself and friends and let them know that I can do things like: poop while in line at the bank or while grocery shopping.  I also like to point out the fact that I can multi task in ways they can't.  My colostomy is meant to be temporary but it is looking more like it is going to be permanent.  A bag is better than being dead!  I havenot gotten back on the judo mat with the "bag" but I do have hopes of one day palying judo again with or without.

I have been reading up on"training" an ostomy and perhaps that too may be an option for you.  An ostomy is a real life saver!

heisenberg
Posts: 14
Joined: Feb 2016

I'm not looking forward to the bag at all, but like you said, it's a life saver. I got reasons to continue living--kids, wife.

beaumontdave's picture
beaumontdave
Posts: 1069
Joined: Aug 2013

Who said "We're all going to die, but noone believes it."? It's oddly true. It's hard to live a full life focussed on the end of it, but a serious diagnosis forces us to try to do that, live reasonably well, while being forced to constantly measure our proximity to the end of life. That is a traumatic thing, for most humans, at first, and ongoing if the news turns negative [while the scarey term is "positive"]. This has made me see irony everywhere, but I still find joy in things. Today is my youngest's 21st B-day, and in 5 minutes, we hit the road to Vegas, soooooooooooooooooo later.....................................Dave

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