icbn
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Look on the bright side. For the first time in my life everybody tells me I look good.
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Connie's thread on venting inspired me to finally look up some articles I read in my Onc's office months ago, about this issue. The first link is to the main article. It's a great article but a little long and sometimes dry.
I recommend reading the side bar article I copied below the link, "Losing One's Right to Complain".
It hits the nail right on the head.
So come on Survivors stand up and Complain. It's our right.
http://www.curetoday.com/backissues/v5n ... index.html
Losing One’s Right to Complain
By Cary Vera-Garcia
As Americans, we have the right to life, liberty and the pursuit of happiness. I would like to add that, despite being diagnosed with advanced ovarian cancer, I also have my sacred right to complain.
A Cancer survivor is expected to always be positive, cheerful and optimistic. If you verbalize any physical complaint whatsoever or fail to have a sunny outlook, you are usually scolded severely by family and friends. Apparently, once you have cancer, you must be so ecstatic about simply being alive that you no longer have the right to say anything negative.
Once you have cancer, bad days must become a thing of the past. Receive a cancer diagnosis and you may never scowl again. If you have hair that is thinning because of chemo, you are told that your hair is beautiful as it is. If you are plumped up with steroids, you are told that you look great with those nice, pink cheeks. You are constantly reminded that you look good, so it must mean that cancer is gone.
You are told that if you remain positive, you will be cured. It doesn’t matter what the doctors tell you. If you have faith, you will be cured. The people that tell you how you should act and feel are the same people that complain about headaches, toothaches, body aches and bad hair days. They have the right to complain because they don’t have a life-threatening illness. They have the luxury of worrying about the little things. I have news for non-cancer survivors—there are a lot of positive cancer patients residing six feet under.
Despite having cancer, I have not suddenly become superhuman. Many of the treatments for cancer feel worse than the disease. I have the right to say that the treatments are difficult to handle. Cancer treatments are expensive and it is normal for me to complain about my finances. I am entitled to feel upset just like anyone else. I am not obligated to act more positive or happier than I actually feel just because I have cancer.
My complaints do not mean that I have given up. They do not mean I will not continue taking treatments. Complaining allows me to vent and work through my feelings. If my family and friends feel uncomfortable being around a person who is honest about her feelings, then I suggest they don’t hang around a cancer survivor. Cancer is difficult enough and I don’t have the time or inclination to put on an act.
Cancer is a lonely disease. If someone wants to help a cancer survivor, they should just listen. While many people are quick to tell me everything will be fine, few people are willing to let me talk about death, fear about treatment and how cancer has changed my life.
If you have rolled your eyes as you listened to your friends admonish you on your less-than-stellar cancer survivor behavior, tell them to be real friends. Tell them to be quiet and listen. Tell them to withhold their judgment on how you should act until they have been diagnosed with a life-threatening disease. Or hand them this essay and walk away. My life is no less precious or lived less well just because I complain.
Negative Thinking Not Necessarily Depression
By Elizabeth Whittington
Studies show that nearly a quarter of cancer patients will have symptoms of depression or an anxiety disorder during treatment. Feelings of anger or sadness about their cancer and the changes it brings are normal and not considered depression.
When diagnosing depression in cancer patients, physicians place more emphasis on symptoms such as loss of pleasure, hope and self-worth that last for more than two weeks instead of symptoms that can also be caused by cancer and its treatments, including fatigue, weight loss and lethargy. Patients should notify their doctor if they experience other signs of depression, which can include indecisiveness, reduced concen-tration, guilt, slowed thinking, and in severe cases, a belief that life is no longer worth living.
Sadness, on the other hand, is a normal component of adjusting and not evidence of depression, says David Kissane, MD, a psychologist at Memorial Sloan-Kettering Cancer Center and former president of the International Psycho-Oncology Society. “While sadness is one of many factors that can predispose people to depression, the two mental states are clearly different,” says Dr. Kissane. “Bereaved people, for instance, can still laugh at a joke and enjoy activities during the day. Depressed people lose this ability.”
Anger, irritability, sense of unfairness, uncertainty and shock are all human and appropriate responses to a cancer diagnosis, and may actually help patients cope. A small study on how different types of negative thinking affect quality of life showed that expressing anger was associated with lower rates of depression and a higher quality of life, while fear and anxiety had the opposite result. Feelings of sadness had no effect.
Keeping a gratitude journal, performing acts of kindness or regular contact with other people, such as in a support group, can boost patients’ moods and perhaps help other symptoms. Research shows patients with a support system in place have less anxiety and depression. And although studies say support groups do not prolong life, they may improve quality of life.
Often patients need to talk out their fears and feel validated. Dr. Kissane advises friends and family to listen. “Acknowledge how distressing it is and be there for them.”
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Still kicking.
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Usro,
Your initial diagnosis sounds exactly like mine. The only difference was the docs decided to pretend the several enlarged lymph nodes were not cancerous so they could justify removing my left lung and the tumor right away.
I'm telling you this to say I know exactly how you feel. That numb feeling and unsure future.
The thing I have learned is this is not an end. It is a process. Uncomfortable at times, but all of it is doable. You are young and I bet tough. You can get through this to love and raise those kids just as before.
Good luck. You are in out prayers.
Bill
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Terri you will always be with us.
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Cindi can breathe...Yay.
Glad to hear you are doing better.
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With my tumor removed along with my left lung and the one remaining Lymph Node (2 others w/cancer cells were removed with lung) shrinking I hope to soon be cancer free. I hope.
My question is about adjuvant chemo. Does this help prevent Mets? Is it advisable?
This is the question I tried to ask my Onc that somehow insulted his professionalism. So since he's gone I thought I'd ask my Buddies here.
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Thanks everybody. Like I said, the best thing to come of this is the fellowship from here.
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I agree it was and is great news. I hate to sound unappreciative. My problem is the irony that when I finally get some good news it is sullied by the Onc's blow up.
The best thing to have come out of this day is the great fellowship here. Thanks LC Gang.
Bill
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I got a written copy of my PET scan Monday and the official word from my Onc today. The report stated that the SUV of the Lymph Node has decreased from 12.0 to 6.5. Its size remains at 2cm.
I assumed this meant I'd be in for more Chemo or Radiation.
The Onc said no. It was great news. My Radiation stopped on 3/6 and the PET on 3/31. The Lymph Node will continue to decline. He is very pleased. I made a mistake and said, "When I first saw the report I thought it was bad news. I thought the node would be fried."
The Onc said I am Brusk and confrontational. He said I may not be aware of it but I am. I'm definitely not aware of it because I've never had any disagreement with his findings or anything else. If I ask a question its because I don't understand. But I ask to learn not to question his diagnosis or prognosis.
Then he said that he's the expert whose been doing this for 30 years and I'd just have to trust him.
This has blown my mind. I have always enjoyed this guy. I never questioned any decisions he's made, everything has been fairly straight forward. Just the basics for LC treatment. I had and have no agenda except to listen.
For the last month of radiation and its afterglow of fatigue I have been trying to "get my affairs in order" to do all I can for my wife in my absence just in case. It has been an uphill battle that has made me feel worthless. His comments have leveled me to a grade below that now.
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Its like the doctor that told a patient, "Did you know some experts say that smoking causes LC?"
I asked him, "Did you know that rubbing my nose in it cause broken teeth."
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One of the great insults to veterans was when the General Counsel of the VA decided that people who picked up their addiction during their service (cigarettes were provided free in C-Rations and sold below mfg costs on base) they should be service connected if they developed LC. They announced this and immediately received over 8000 claims.
In doing a cost analysis the Congress decided that they could not cover the disability payments to Veterans with LC AND pay for the upcoming Transportation Bill of 1991.
In an attached rider to the Transportation Act of 91 the congress added that no cigarette related disabilities would be considered by the VA.
Many highways are paved with the lungs of Veterans.
Do check into the VA Pension for non-service connected disabilities. Also if he was ever exposed in the military to know carcinogens, nuclear tests etc. Exposure to Agent Orange is considered ipso facto reason to service connect LC. So are the human guinea pigs made to watch nuclear explosions.
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Just like the chemo dries out the skin sometimes it can also dry put the mucous membranes to such an extent they develop ischemic areas. A lot of us have had trouble with nose bleeds. Mine ooze constantly until the chemo stopped. I also had blood in my stools. The colonoscopy showed the ischemia. This is essentially a dry spot or area of a thinned out wall in the intestine.
Hopefully it and your WBC will be corrected soon. You will be in our prayers.[/b]
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Ry, weird as it sounds the slip and clay dust at one time contained asbestos. My mom spoke with me about it this evening.
Maybe. But kilns could easily have been lined with it.
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I can identify with your husband and others who have voiced their concerns on what to do next.
I see that as a good thing, however, because it means we believe we will survive. Now we just need to make survival worth it.
I think we can begin that journey by recognizing while we may have lung cancer, the disease does not define who we are. The life we lead does.
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Consider me one of the many providing you with, "...lots of prayers".
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Thanks guys. You are the best.
Throat is tolerable, but still uncomfortable. Just wrestling with finances and such. Just when I think I might make it the good ole IRS pops up and wife's insurance jumps nearly $200 per month. New day new battle.
I don't have the luxury to worry about lung cancer.
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Thanks for all the tips. They have been helpful.
I'm afraid I'm a true pig. I gobble food then swallow with a groan, then gobble more food in spite of the pain. Somebody please stop me.
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Rick, give Katie our regards.
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You guys rule. I love this place.
I didn't know if Magic Mouthwash was a generic term or specific. IT is apparently specific. My Rad Onc gave me a prescription for it today. She ( BTW the rumors were true, she is cute) gave a list of ingredients and the pharmacists mixed it. Fortunately he had the Bats ears and Newt eyes in stock.
I also remembered someone mentioning Carafate before and could not bring up in my Chemo Brain memory banks what it was. Thanks for being there with the answer.
Luvmydog, what is the GI Cocktail?
Yesterday it felt like I was ripping my throat apart when I swallowed, after the Magic mouthwash it just feels like I'm rubbing it raw. Is that level of improvement about what everyone else experienced?
Again, thanks to all for your kind replies. It's good to be home with all of you.
Bill
BTW
My wife and I traveled to Madisonville, Ky to see my new Grandson this last weekend. I am one happy camper. Life is good.
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Only 2 weeks into radiation and my throat already feels like I'm trying to swallow cactus wrapped in sandpaper. I don't know if it's the rad or a sore throat, it is high up in my throat. I figured it would be more under the breastbone.
What is that Magic Mouthwash stuff called. Any other treatments for the throat?
Thanks,
Bill
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I'm sorry your Mom is having so much pain. Some [people, myself included, do not get much pain relief from opiates or narcotics. Aspirin, Tylenol and Ibuprofin actually do more to give me pain relief than does morphine.
As far as carbs and sugars, this is from our own Ask the Experts:
"As to the statement that sugar feed cancer cells - of course they do. But they also feed normal cells too. You can't really change conditions enough to deprive cancer cells of these things without depriving your other cells as well.
This will probably bring a storm of protest but there really isn't any good evidence that the composition of the sugars in your diet makes any difference. I know there are lots of people who make claims to the contrary and talk a lot about the different kinds of sugars and their chemical composition. But basically the body just converts any sugar into whatever kind of sugar it needs at that particular moment. If there is no straight sugar in your diet, then the body just extracts the sugar from the foods you do eat and converts into the different types.
Eat a healthy, well-balanced diet and you should be fine. "
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Hollyanne I am so sorry to hear about your mother. I know she was at least fortunate enough to have a wonderful and supportive daughter. I am sure you brought her great joy to her life.
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You guys are tops. I didn't want to hang around if my being here reminded anyone of the "drama". Sounds like the Irish talking about the "troubles".
I miss all of you too much to stay away though.
Radiation is no problem yet. As I've learned from all of you the side effects won't occur until 2-3 weeks.
Survivors Fears
in LC SURVIVORS
Posted
My greatest fear is for those I leave behind not being cared for financially. I spend my time trying to insure their future provisions.
My personal fear is that my pulmonary capacicty will not get any better than now. I keep pushing myself to do more and more. I can't cut my yard (push mower) without stopping a couple of times gasping and struggling to breathe. My yard is not that big either.
As one exercises the body responds and becomes stronger. Then the exercise gets easier and easier. But, like with the grass cutting, everything is getting harder with more SOB. To me this means I'm working against my body.
Does this change?