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confidence and cancer

johnsfo's picture
johnsfo
Posts: 47
Joined: Oct 2009

I’ve just been reading Kathryn’s Caring Bridge website, and Kathryn, I’m so sorry to read about how hard a time you’ve been having. It all sounds frightening, frustrating, and just plain bad. In one of your journal entries from the week, you wrote: “I lost confidence in my ability to deal with battling cancer, and couldn't deal with anything. It was my worst day since I first knew my battle was beginning.” That sums up my experiences this week, and I’m opening a new thread to see how others have experienced sudden loss of confidence in their ability to deal with cancer and what they’ve done about it.

I too have had the hardest week since I was diagnosed over 2 years ago. I don’t know exactly what brought it on. I’ve been confident and so on top of things from the start – always able to take even really bad news, really bad pain, really depleting treatments and keep my head up, take it in stride, and just focus my imagination on ideas, moments, experiences that give me psychic energy and sustenance. Always able to act well with others, not complaining, not demanding, keeping my sense of humor and pleasure in their company. Always able to keep myself engaged with creative projects, projecting my will and my intentions into the future. And then suddenly this week I couldn’t do it anymore.

I started a new chemo regimen on Monday, irenotecan and 5FU pumped, and it whalloped me. I woke up Tuesday in the most total malaise I’ve had, feeling like I’d had food poisoning, disgusted by food, too weak to get out of bed, listless, hopeless. That came on the heels of such quickly declining abilities in the last month or two, including recovering from a colostomy and having my pain return from the sacral tumor. The pain came back so fast – within a week – and more ferocious than ever, so bad that I spend most of my time in bed because lying down is the only posture that gives me some relief and because I have more than tripled the dose of pain meds and now I always feel tired. With the quick return of pain I’ve also spent most of my days in medical offices and clinics (really, 22 appts., tests, procedures this month).

Somehow, with all of that I just woke up on Tuesday and felt just as Kathryn describes, like I’d lost my confidence to deal with this disease anymore. Horrible emotions that I’d not felt before came forward: feeling ashamed for being sick, as if it were my fault and ashamed to need so much help from others; afraid of how I will deal with ongoing pain and afraid that I won’t be able to continue to be able to take care of myself financially and physically; really so much more palpably aware of death and the sadness that makes me feel for the loss of so many people and things I love.

I’m feeling better – wouldn’t be able to post this if I weren’t – but it’s been a really terrible experience, and I’m posting just to hear how others may have experienced sudden and temporary depression, sudden loss of confidence, and how they have dealt with it. For me, part of feeling better is just having the chemo malaise begin to lift, but more important, I think, has been Adrian’s ability to offer perspectives that brought me back to my center – to show me that I have acted consistently with integrity to my beliefs, that I have always found the strength to get through the worst of the disease, and that I continue to have love and support as I go through this horrible disease.

Maybe a bit of a ramble, here, but please join in if you feel moved.

Best to you all,

John

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Great to see you here in person. Glad you are feeling better.

I have had similar temporary periods of depression. Sometimes an overwhelming sense of forboding and despair. They are debilitating when they strike. But thankfully, for me, they do pass. I can't imagine what it must be like for people who live with chronic depression. The fact that they come on so suddenly and leave, almost without a trace, makes me think they are largely drug induced. It can be like night and day for me.

Recently I have seen my "Integrated Cancer Care" Doctor who has recommended a Chinese medicine herbal supplement for chemo support. I had a similar supplement a few years ago and found it helpful. I'll send you the info in a PM. Between that and getting my sleep pattern fixed I'm doing pretty well right now.

What a blessing to have a life-partner like Adrian who can be with you at the lowest and help you to see the light of day again. I give thanks for Pam, she does this for me too.

It is so strange to see your bright and smiling picture beside your note describing malaise and depression. Maybe we should have a set of pictures showing different ranges of wellness that we can use when appropriate. :) :)

It's been pretty quiet around here lately. You haven't missed much. It's nice to see you back and I hope you are able to enjoy the rest of this cycle in good spirits and with some bodily wellness. I imagine the garden is calling!

Be well... Rob; in Vancouver

lcarper2
Posts: 638
Joined: Dec 2009

I to get those feelings of just geing sick of being tired I am lucky that my onc has said I am cancer free and only have to do chemo till April , but the depression stills lingers I am 62 and a very brittle diabetic 4 shots a day and 25oo mg of oral medication to try to keep it under control my legs are all but gone and now the weather here in Oklahoma is so bad I hate to think I may need to go outside. I never expected to be a cancer patient/suvivor but here I am. My husband has been a big help he helps me up if I fall and has cared for me very well a good partner is always good to have but when the big C hits it is almost life or death and I don't know how I would have gone through this alone I would have been dead by now the feeling of guilt are very bad at times but you just have to get through. I hope you will fight as we all have to do and get along very well please keep us posted on how you are doing...

Be Well...Louann

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

I'm 28 years old and I'm stage iv. I've had 4 rounds of FOLFOX and been hospitalized 3 out of the 4 times. I wonder daily why put up with all this pain, sickness and suffering. To me I feel that this is not a quality life and wonder how I can continue. My onc told me chemo for the rest of my life and I fear that I can't do it. Then I realize the other option won't be easy either :) Its easy to let our emotions get the better of ourselves and eat away our confidence but that's when I turn to you guys and realize that I'm not alone in this battle. This board picks me up when I feel I can no longer stand on my own. Thank you guys for awhile I thought I was the only one who felt this way I guess we all have our moments. I'm just glad to have a place where we can share our stories.

lcarper2
Posts: 638
Joined: Dec 2009

Maybe I am getting old , but why would you have to have chemo the rest of your life??? If the treatment works and you are NED than you would only have to take it if it comes back and all of us face that but to say REST OF YOUR LIFE is kinda out there unless you have very bad case of cancer and there are alot of folks on here who have just that ,but please don't give up the positive thinking will get you through we will help in anyway we can you have to be a fighter in the battle of cancer vs us...

eric38's picture
eric38
Posts: 588
Joined: May 2009

I am 39 and in the same boat. I thought I was young for a colon cancer patient. It`s a tough thing to deal with at any age but it`s unfortunate that you have to deal with it at such a young age. One positive thing is that youth is on your side and your body is probably stronger than most people who have to do this. My doctor told me chemo for life too but I am currently in remission and after the next 3 treatments he is going to stop the chemo as he puts it " for a while." Translated he is going to give me a break but start treating me again when it comes back because he believes it`s inevitable that it will return since I am stage 4. I`m sorry you are having such a hard time with chemo but if they can get you in remission or in a position where the cancer is controllable I`m pretty sure they will put you on a lighter regimen. Some people only have to be on avastin for maintenance which supposedly does not cause very many symptoms. I am on but with other drugs so I can`t tell if it`s causing me any symptoms because of the other drugs. Hopefully you will get some lengthy breaks too like I am getting. Along the way my doctor has given me some short breaks. The longest one being a little over a month. He said he didn`t think it would effect the outcome any so maybe that is an option later on.

Eric

papajedi's picture
papajedi
Posts: 110
Joined: Oct 2009

There are many who have had dire announcements over them by onc's and it has NOT come out that way. Chemo is NOT always forever, just ask scouty her on this site. You are your own best advocate. The odds don;t dictate to everyone and you are VERY young and strong. !! You have a family to raise in the future so get in there and kick some butt !!

Annabelle41415's picture
Annabelle41415
Posts: 5951
Joined: Feb 2009

So sorry that you are struggling. Depression is a common factor and if someone says they haven't gotten depressed they are lying. Confidence is a part of depression. Every day it creeps into my head, with a huge amount of tests coming due in April, my head reels with trying to comprehend what has happened to me and how my life has totally changed. You have been through so much with all these appointments and tests, you have my full support because it has been so soon after your colostomy. Hoping that you are feeling better soon. You are always thought of often. Still love that heart that Adrian made with the semi-colon - think of that all the time.

Kim

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

John,

I understand what you went through in a very real way. Your words brought it back in a flood of emotions. Mainly, the feeling that I'm truly not alone.

John said, "Horrible emotions that I’d not felt before came forward: feeling ashamed for being sick, as if it were my fault and ashamed to need so much help from others; afraid of how I will deal with ongoing pain and afraid that I won’t be able to continue to be able to take care of myself financially and physically; really so much more palpably aware of death and the sadness that makes me feel for the loss of so many people and things I love."

This portion especially touched me. It describes how I felt almost exactly. I woke up one day after being in bed or the hospital for 2 1/2 months, feeling helpless, worthless, of no value to society. Fear gripped me like never before in my life; the loss of hope. I told my husband that if my onc suggested chemo I would refuse all treatment. That lasted for 2 days. I couldn't stand the look in my husband’s eyes: fear, sadness, helplessness....he just doesn't deserve that.

It took me 2 1/2 years of constant treatment, heavy-duty torture type treatment sometimes, to get to this point. It isn't pretty. I just couldn't take anymore. Of course my onc knew that and we avoided chemo for awhile. My attitude adjusted and I was myself again.

This was very scary because I'm known for my positive attitude and perseverance. We're all human with real human failings. I can't be positive all the time (and I'm not) and I can't avoid that walk of fear that we all must face one day.

Thank you for your post. You have a wonderful way with words.

All my best,

Kimby

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

You have been on my mind. I don't post so much anymore, but I do read almost everyday to see how people are doing, and finally the last couple of days my fingers were inspired to take flight and hop back into the mix here. I pray for you and others here daily, and I'm grateful that you have someone so kind and wonderful like Adrian to share your life with and to help you cope with cancer.

I have read your post several times and I have so much to say to you. Right now though, it is getting late in the Florida Keys and I'm goofing on cold and cough medicine. I think I may have blown my last bit of wisdom into my Kleenex, so I want to meditate on your post for awhile. Perhaps it's the pink haze of Benedryl, but I'm sensing something between the lines....maybe not so much depression, but more weariness? In any case, I want you to know I'm thinking of you, praying for you, sending all the good thoughts I can muster to the Universe to lift you up with blessings of renewal and strength, and for the boundless love you have in your life to shore you up in your times of weary.

To everything there is a season - perhaps this is your time for a season of rest, to renew your spirit and recharge your energy sources.

I will write more tomorrow...until then, rest easy with the knowledge you are deeply loved and you have many friends who wish you all manners of wellness...

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

I feel your pain man! I woke up or at least tried too today. Last night and this morning were hard for me. I just had this terrible feeling of dread and doom. My wife went to her mom's with my boy and I was all alone. I just laid there. 2 years I've been dealing with this. What sucks is that it's a 24 hour a day, 7 day a week struggle, no off time, no delays, no breaks. I never know when I'm gonna be in the hospital. My wife got offered a truly kick *** job. She can't take it because who knows when I'm gonna be in the hospital for a month or so or worse dead.
Then things got a little better. There is some really good snow on the ground. I took a hot shower, sat in front of the fire place. I went for a ride on the 4 wheeler. I enjoyed the day for about an hour. I got back into the groove of things. I allowed myself to be down for the first time. I don't feel bad for feeling down. I've earned a little depression. I thought about all those********** on xanax, zoloft, prozac, lithium, or whatever, whose only cause for depression is that their order was screwed up at Mcdonalds. We've come to feel beat down the honest way. Now, my little intermission is over and the game is back on. Get back in there and mix it up when you feel it's right. You know you can do it.

PhillieG's picture
PhillieG
Posts: 4882
Joined: May 2005

What you post is very common I think with the majority of us. You have been at this a while and I'm pretty sure that you thought you'd be done with treatments by now but you're not. That has happened to me many times and now I have accepted that I will most likely stay in treatment forever. I have dealt with depression pretty much since day one and I take meds for it and it's helped me. I'm not saying you have to go on meds but it could be something worth looking into. There are days when I need that extra boost. I wish I could summon it up at will but I can't. I had to go back on a heavier dose of chemo a few months ago and it's hit me hard too. I can not work though it anymore, I need to take 3 work days off then it's about 2 more days before I feel how my "normal" is. I have however, managed to work throughout the 6 years of non-stop chemo I have been on since my dx in 2004.

This stuff, the "cure" is wicked nasty stuff. Do not feel that you are the only one who feels like it's hard to go on. Hang in there.
-phil

johnsfo's picture
johnsfo
Posts: 47
Joined: Oct 2009

Thanks, everyone, for your generosity, your insights, for just being here. All of your posts help a lot.

I was talking with Adrian last night and we agreed that one of our strengths in dealing with this disease is our honesty with each other. When one of us is having a hard time, we just say so. We don't pretend and we work it out together. We've each let ourselves hit the ground, gone to really dark and frightening emotional and psychic spaces, and we've found our own strengths by doing so and found (knew it all along and are reminded) that we are each steadfastly and powerfully there for the other.

I could write so much more -- about how I've gained empathy for those with chronic depression (even though I write "empathy," it's hard to imagine going through days, weeks, months, a lifetime feeling like I did early last week); questions, Phil, about how you manage to continue to work through the symptoms and treatments (I've been on leave since March, and I am certain I could not have performed my job well); and so much more in this thread, but those are new topics.

Rob wrote that his periodic depressions have come and gone suddenly -- as has this one for me. Now I just feel like a lucky man to have Adrian as my partner and to have friends that include all of you.

John

papajedi's picture
papajedi
Posts: 110
Joined: Oct 2009

Gave me wicked mood swings, it was very hard. We lift you.......:)

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

John,
I was having leg pain from the chemo/rad. I went into deep "we're talking get the gun" depression. Found out it was because I was taking Aleve for the pain. The doc had me taking a double dose of over the counter so I was getting the prescripion dose. When I quit taking it the depression went away the next day. My Humana nurse looked it up for me and it is one of the side effects Aleve can give you. I just went back to percocet and got stoned.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I'm stubborn. I'm normally very tough. I'm "in control" and don't like it when I feel loss of that. Through another rough ordeal earlier in my life, I learned to say the Serenity Prayer daily - and often more than that. (This is NOT meant to get anything going on any religion thread - but just to point out that I needed help accepting what I can and can't change, and the wisdom to know the difference.) It did help me.

Well, this new battle, and somehow I haven't quite been able to accept the "loss of control" again. I expect me to be the one that always has it together. My friends and family expect that I always have it together. That is just the way I am. I'm working on it though.

Like everyone else, I deserve to have my bad days too. It is scary getting through those days. We've earned them. Even when live is going really well for people, everyone has their bad days. Now take the craziness that we live with and sometimes get beaten down with day after day, and how can anyone be expected to be a "rock" 100% of the time?

We need to give ourselves permission to not be in control - to be scared - to whine - stomp our feet - or curl in a ball, and not participate in the world for a day or two. We don't always have to be strong for everyone else. We don't always have to be strong for ourselves. Some days it is our turn to let others be the strong ones. I don't see any way to get through it all without letting it out. And I have a very hard time believing anyone that says they are always positive, and never have doubts, and never have a bad day. We all have a breaking point. If we didn't, we wouldn't be human.

I think most of us don't talk about it much, because we have a need to try and stay as strong and positive as we can if we are to have hope to succeed in our battles. And we don't want to bring anyone else down. We know they have that need too.

And somehow it is taboo to think or talk about dieing and death, but it is the one thing that is certain - if you have life, some day you die. So how are we to be prepared when that time comes if we aren't allowed to talk about it or think about it? We need to do it.

I'm blessed that my husband has done so well through this, and continues to support me. And ever since one day several months ago, when I explained that while I'm "positive" most of the time, I deserved my moments of whatever I am feeling, even if I'm not being 100% positive, he gets it. I don't get the lecture about needing to stay strong and positive anymore. On the rare ocassions when I have a really bad time, he just holds me and tells me how much he loves me. No super pep talks, no guilt trips that I should be trying harder or complaining less. Just love. And we both know my bad day(s) will pass, and I'll be recharged and back in there fighting again.

I have tried to keep my children from seeing me at my worst, but I think they also need to know that sometimes life gets really hard. And sometimes that means being totally overwhelmed. But that in the end, you can still get through it, no matter what comes your way. This week the hard part was knowing my oldest daughter who has been staying to help me was leaving and worried about me. I wanted her to be able to leave feeling good about things - feeling that I'd be fine and through all this soon, and that she'd done way more than could ever be expected to help out. But instead she had to leave after a big scare, and seeing me not doing so well. At least last night we had all the kids here for dinner together and I sat at the dinner table and ate with everyone. I pushed myself to have a "normal" night even though I was not in any shape for that. I wanted to give her the gift of leaving with no guilt - no worry. She gave me such a gift by staying with me for 4 months. I'm not so old that I don't remember those days - ready to be out in the world experiencing everything possible in life, having fun. I know I would have done the same for my mother, given the same circumstances, but I also know the big sacrifice she made.

Today is a weepy day for me. And I'm not normally a weepy person. But I'm still coming down weaning off steroids, my angel is off on her next adventure - moving to Australia today - and I'm confused and scared about what to do for the rest of my chemo treatments. But I'm doing WAY better than I was a few days ago. And I'll continue to get stronger. And at some point I'm sure I'll have another really bad day or days, but I'll get through.

Sorry - I'm really in rambling mode today - and the brain is still under chemo/steroid fog...

papajedi's picture
papajedi
Posts: 110
Joined: Oct 2009

It's good for the soul :)

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