Thursday, August 13, 2009

PTSD and me





I've been having a difficult time with post traumatic stress since the end of chemo. I am avoiding the hospital like the fucking plague. Who knows, the black death could very well be lurking the halls of Kaiser somewhere. Best to stay home, right? Wrong, I know I know.

I can't read the archives of this blog; it's far too painful. I don't even remember writing half of it. The words literally make my stomach turn. I have nightmares, insomnia, et al. I can't be in any sort of sterile medical environment without breaking out in a cold sweat. Whilst having my teeth cleaned recently I had a mini panic attack because the dentist's chair reminded me of the chemo recliner I befriended during treatment. Blarg. Barf. Ick.

My point, I suppose, besides bitching, is that cancer doesn't end once you're in remission. It becomes a terrifying part of you, kind of like how Tom Selleck and his moustache have become one single entity. It haunts your dreams. I could go on.

Have you had any experiences with PTSD since cancer? I'd like for this blog to become a forum to help those going through something similar, so please comment!

"...Slowly, slowly the wound to the soul begins to make itself felt, like a bruise, which only slowly deepens its terrible ache, till it fills all the psyche. And when we think we have recovered and forgotten, it is then that the terrible after-effects have to be encountered at their worst."-D.H. Lawrence

18 comments:

Lauren said...

I'm still in treatment, but my little brother has a lot of little things. There are certain things that he craved or used a lot of during chemo that make him throw up now (canned green beans, whole milk, and crest mouth wash amongst other things...) and he also gets really stressed out at the smell of rubbing alcohol... He also doesn't remember most of his treatments (probably a defense mechanism for the stress)

i hope it gets better for you. i don't want to trivialize anything, but if it's any consolation, your hair looks adorable! i can't wait to get to that point...

kaylin marie said...

please, trivialize away, I think it's the only way we can get through these things :)

Sandi said...

oh yes. It will never leave me. It will never go away. I think though oddly my pregnancy during it all kind of helped me. People freak out hearing I was pregnant and wondering how I dealt with it all but the chemo ended only a few weeks before her birth. I thought of her. I concentrated on her and refused to dwell on me. I had to get better for her. And you know I will always be scared of it coming back or the treatments causing other cancers but you might find it odd I decided to go into Oncology. I am in Nursing school and I after all I went through I decided I could do it. Someone has to right? I hate going to the doc. I hate being the patient but I can take care of those that need it. And one day I will.

Jen Gray said...

Yeah, totally.

Just being in the same neighborhood as the Cancer Center where I received my chemo makes me nauseated. There are certain foods I still can't eat.

I had a secondary cancer scare last month and hardly slept at all during the times of all the testing and referrals.

It's weird being so (relatively--I'm older than you are) young, but being so aware of death and dying and illness. I feel marked and changed, and not really in a good way. More in an increased anxiety kind of a way.
.

Kris said...

I think about it all the time. Every corner I turn brings a refreshed memory of something that happened to me a year ago. It's weird. For instance, right now, I'm at work. I'm sitting across from an office where almost exactly one year ago I was curled up in pain on the floor in the dark trying to figure out what was wrong with me and scared to go to the doctor. I don't go into that office very much.

It's little things, too--TV shows that were on while I was in treatment, bands I was listening to in my room (Fleet Foxes, Mogwai). Those things will set me off on a chain of pinpointed memories that I would rather forget instead of calling up in excruciating detail.

Brian H. Rogers said...

Hi - saw your blog mentioned in the Newsweek article.

PTSD - sort of. I'm 8 years out now (was 22 at the time). The first year or so I was mostly a hypochondriac. Any new ailment I had never experienced before - my mind automatically went straight to cancer. Certain smells & sounds had associative power & would make me nauseous. No Doubt's song "Hey Baby" was popular that year & I heard it entirely too much during chemo, so I still change the radio station if it comes on. Whether this is more the chemo or the merits of the song, who knows.

For the next several years, nightmares & anxiety, never directly about the cancer. I suppressed most of what I felt about the experience, which caught up with me around year 5.

But, yes. It stays with you. Some of it gets better over time. It's been long enough now that I've forgotten the physical sensation of chemo that if I were to have a recurrence, I'd willfully go through it again.

The only constant lesson I've learned is not to forcefeed the need to feel healed.

POD said...

I don't have too much trouble with PTSD. Like I've said in the past, Living is the best revenge. Get on with it and act as if nothing is wrong, nothing's coming back, no boogie man. Otherwise all you have is fear and that is no way to live. Fear is the same as cancer. It invades and destroys and makes what life you have unlivable and unmanageable.

On the other hand, my husband who died of colon cancer in 2001 had to stop smoking pot because it reminded him of chemo. He couldn't even drive toward the town where his onc was because he'd start to get sick to his stomach. Then he died.

Don't let fear ruin what life you have.

biffm said...

I had a year of remission and now (as of two months ago), it's back. You are right...you still think about it a lot when in remission, but now that I have it again, I can say that I think about it more when it's current!

diminished said...

PTSD-check! It's still really early for you so give yourself time to work your way back without being overwhelmed-PTSD has a way of catching up to you after you've officially started to descend from shock.

I completely broke, was given mini-press and Remeron (for PTSD), suddenly didn't even feel safe driving and threw them away. Tried Prozac-the worst idea ever for me but for some they like it, made me feel utter rage. Valium got me through the diagnosis and radiation beautifully but it works too well, and can't be taken regularly. Zoloft made me feel like I'd just taken a sleeping pill, and doctors won't make a regular prescription for it because you aren't supposed to continue it month after month. Course you are in S.F. - you could get a medical card, but I didn't say that. I'd go for oil capsules, nightime formula.:-)

Lately I stopped my Bikram Yoga, hiking, surfing, and other activities I found to be extremely helpful. I feel my fears and frustrations rushing back and have frozen up a bit. The way out is to jump right back into the fire.

Keep active and busy if you can. Do things that you know are healthy for you- exercise, good eats, your work. I built an herb garden these last two summers and feel enormous benefit from taking care of it, harvesting fresh eats, learning to dry and cook with the herbs, making teas, etc. I wouldn't recommed drinking as much red wine as I do, but a glass or two at night might also help calm you.

peace out kiddo,
jump in! ;-)

Miss Melanoma said...

This post-treatment life is quite the business. I was shocked when I couldn't just "get back to my life." I didn't understand when people said, "it changes everything," until it had changed everything. Some of my friends have made their life more meaning after treatment. I look back and think I was happier before, but I also admit shit now that I wouldn't have before. I guess, now, 5 years after my diagnosis, I'm getting to the point where a recurrence doesn't constantly scare me, but it's always there. I want to be like my friends and make that a good thing. Everyday I think I am moving that way in micromillimeters. For now, I am just happy to be here today. And I'm happy that people like you can understand that! We all heal at our own pace, and, as bad as it sucks, where you are right now might be a part of the healing. You are doing awesome, believe it or not. Try to just be patient with your pain. You have endured so much!

Anastasia said...

Hi Kaylin!
First of all, I want to say, I love and admire your creativity. Absolutely BeautifuL...like YOU! I can imagine why you wouldn't want to look back right now. At the same time though, perhaps you could see it as an accomplishment!? Look at what you have been through and what you are! A dynamic, powerful, adaptable, force of Nature and Spirit! Look what life threw at you and what you made of it! I think you are beautiful! But I already said that. Cancer does suck! No doubt about that. I have what should be my last chemo tomorrow and some radiation to look forward to. I am also a youngin' though not as young as you- I was 24 when I was diagnosed with Hodgkin's. I do have worries and uncertainties about the future....but I'm not there yet. So....I guess all I can say is I feel for you, girlfriend, and fellow life traveller! Thank you for sharing and good luck in all your endeavors! I hope the PSTD becomes increasingly manageable. :) wish I lived in CA and could get this "medical card" they speak of....;)

Abby said...

I definitely have experience with PTSD. Certain scents, like Purell hand sanitizer or the smell of really bad coffee in a tiny elevator, definitely bring back bad memories. I also can't eat certain foods. Even four years later, I can no longer eat stuffed grape leaves. Certain other foods that I ate while getting chemo though, like Cheerios and cashews, I can eat, possibly because they're more normal foods. I also get panic attacks. I was diagnosed when I was 15, and I used to get panic attacks late at night especially, when I was trying to sleep, and I'd have to go in and get my parents in order to calm down enough to sleep. It made going away to summer camps and even starting college difficult. I get them less frequently now, but certain things still make me really anxious. Itching, particularly in unusual areas like my feet or hands, causes me to freak out because I had terrible itching (waking up with blood scratches all over my body) as a symptom of my Hodgkins before I was diagnosed.

There are lots of other panicky situations. They decrease as time passes, though. That's not much consolation now, but the time passes more quickly than you'd think. Things get fuzzy, as others have said, but that's okay, because when they become clearer, as they sometimes do, it's a lot more painful. Some days you won't think about it at all, and other days you'll think about it a lot, which can be good because it's a part of your identity now. It's changed the way you think and the way you view the world. I know it sucks for now, and some of it will always suck (I'm assuming, I'm not to the always point yet), but it does get better. I find it really helps someone else who's had cancer that you can just talk to, not always about cancer, but someone you know you can go to when you feel shitty and they'll understand. You aren't alone!

Sean said...

This too shall pass...

I tend to take POD's (see above) path throgh this. We all have days where everything reminds us of a time we would rather not remember, atleast not daily. But it will pass, you do the best you can to claw back some control, whatever that may be and you get on with things.

If there is anything I can do to help I am here for you. Even if its just to vent your frustrations, I can take it. Or, since I'm in the neighborhood we could think of something that we've never done before, visit someplace new...that way we create new memories, a step forwards rather than a thought back.

And don't worry, all things will pass if you let them.
~Sean from planet cancer

Valerie said...

diminished's post ^above^ is pretty awesome. I haven't had cancer, but going to the desert (came home Oct 2005)messed with my memories! Right after I got back I felt so un-me, very distracted and scrambling for normalcy...which used to be the vacuum of Afghanistan. Years later I was driving at work and had a full-on flashback scenario (dust triggered it!)- creepiest feeling but realized quickly it's not real. Smells of blood, 3rd world body funk, and burnt tissues set me back in time. Also can't watch or hear injured service members. Too many memories stayed back in the "fear" trigger of my brain- EMDR helped work through harder memories of the patients I worked with. It's nice to have a visual distraction while thinking about nasty things. Talk talk talk it out of you. Let it go whenever you want. Love you.

Kate Burton said...

I'm a 3 1/2 year breast cancer survivor and PTSD is remarkably common. There's even research that is showing it's worse the younger you are diagnosed.

I don't know if it will ever go away. I go to follow up appointments on Xanax. My GP tried to get me to give up my Xanax prescription and I told him that it's like asking me to give up oxygen. I don't use it every day but if I have an appointment it's the only way for me to go.

The fear of recurrence comes and goes. It's really high when I'm due for a follow up scan or when someone famous is diagnosed and cancer is all over the media.

I think you are doing the best possible thing you can and that's talking about it. I didn't blog during treatment because I was cool then, it was after that I didn't know what to do with. Hang in there, we're all with you!

Meenu said...

man I cried so much last night. the tears kept coming and snippets of thoughts on how scary the surgeries, treatments, scans and complications were. and how the heck this could have happened to me. you would think I would have comprehended that by now.

it's been 9 months for me since diagnosis and the speed boat ride through all the craziness of slash and burn to three hospitalizations in April for the doctor induced medication overdose. I had my post treatment follow up at sloan-kettering two weeks ago and since then I have worried more about recurrence.

knowing the facts of my tumor size having been large and the amount of vascular invasion with the stats and timelines laid out by the oncologist. and now is the time I am supposed to be back to life as my tumor markers are undetectable even as I deal with major fatigue, pain and heart wiggly fainty spells.

I have been looking up psychological resources and haven't found anything champion yet. I am trying to deal with the medical debt I currently have before adding more for a therapist. I did find a harbinger workbook on stress management for cancer patients and will start reading that this week.

reading this post I can say I feel you. I stayed home today and watched rented videos with swollen eyes, giving myself the day to just be. watching grey's anatomy is probably not helping but I did it anyway. : )
but yeah there has got to be more resources online and around in dealing with this and I am going to keep looking till I find them.
Much Love,
Meenu
http://www.lightstalkers.org/meenu
http://myplanet.planetcancer.org/profile/Courage

Mr. Friendly said...

It took me almost 8 years to muster up the courage to go back into the chemotherapy wing at my hospital. I remember every corner and every turn. The smell still makes me feel like vomiting. Its been 13 years since my chemo ended and I am still suffering the mental effects of my experience.

I avoid all doctors and hospitals when I can.

Anonymous said...

I know this is from a while ago, but I just found it (gotta love google) and I'm hoping you can give me some insight. My husband had leukaemia when he was 6-8 years old and spent a lot of time in hospital, not really understanding about his illness but knowing that his parents were leaving him at this bad place where he had horrible things done to him. After all the treatment his family treated it like something in the past, that was over and didn't need to be spoken about. So he's been suppressing all the memories and feelings for close to 20 years, but struggling with anxiety issues, trust issues, separation anxiety, depression, lack of confidence etc from his late teens. Its only in the last few years that he's started talking about it and processing the experience, and this comes and goes over long periods of time. Right now he's in a really low place where he says he can only see the world as being a dark place of destruction, and he desperately feels like he has to control everything in order to save himself from being sucked into this dark place, where he will be separated from everyone he loves. And he feels like this is inevitable. He's terrified of hurting someone he loves of killing himself, but he has feelings that it might be the only option, the only way to take ultimate control and escape the dark despair. I wouldn't say he is suicidal, more that he is afraid to find that suicide is the only option left to him. It hurts so much to see him going through this and I don't know how to help him or what to do. Is this just something he needs to keep talking through, keep making sense of? Keep crying? Will it pass? Will he get to a point one day where he has processed all the suppressed feelings and come out the other side to see the world as a good place to be? And how can I help him? What should we be doing to help this process?