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Living with cancer is the name of our newsletter and the blog. However, only you know what it's like to live with cancer — and everyone's experience is different.
This week, I'd like to explore your quality of life concerns. Quality of life can be defined in so many ways. Your quality of life can be significantly affected by pain, fatigue and other symptoms of cancer and treatment side effects. Stress, family issues and financial concerns can also impact quality of life.
Researchers study cancer patients frequently to understand quality of life while going through cancer treatment. However, we're also aware that quality of life is affected long after the treatment is over. It's not uncommon to hear that people are struggling with fatigue, pain and stress for years after cancer treatment has been completed.
What's your quality of life? What makes a difference for you? Here are a few thoughts:
Feel free to add your thoughts to the discussion. What's most important for your quality of life?
Follow me on Twitter @SherylNess1. Join the discussion at #livingwithcancer.
Sheryl M. Ness, R.N.
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You mentioned peripheral neuropathy...my breast cancer treatment called for two rounds of chemo (12 weeks each)followed by surgery and then radiation.
My chemo team had me start taking 100mg of vitamin B6 every day from the beginning, even though the second round of chemo is the one that causes peripheral neuropathy. I am now a little over halfway thru the second round and neuropathy has not been a problem yet!
I love my chemo team!!
An interesting discussion is worth comment. I think that you should write extra on this topic, it won't be a taboo topic but generally individuals are not enough to speak on such topics. To the next. Cheers
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I am researching quality of life in cancer patients during and after treatment for a FNP program project. Do you have resources on where I can find actual statistics of the number of cancer patients that experience a decrease in quality of life during and after treatment?
I finished treatment for stage 3 rectal cancer about 12 weeks ago. I recovered much of my energy. My feet and hands have healed and my brain fog is lifting. I still have very irregular bowel habits and hope I can get some sort of predictability in this department. I'm trying probiotics, fiber, anything to get the random diarrhea and gas under control! Whenever I feel angry or sorry for myself, I remember my loved ones I have lost to cancer and think how beautiful it is to be alive.
It made me feel good to hear from all of you. My lifef has never been the same and probably won,t. I had stage 4 non-hodgkins 2 different kinds along with a lot of other life threatening conditions. People think since you look good on the outside that nothing is wrong, it,s over there is no more pain or worry. That could not be farther from the truth. Without God I would have not made it or still would,t make it has me here I have to be here for a reason to help someone or do something even though I can,t do much. I have become unreliable because I never know when I will get bad again and can,t do anything. I am in remission but the pain is almost as severe as it was before. I try and keep a positive attitude and with God,s help most times I do.
Could you expand on the newer treatments for partial neuropathy ,, Please..... Thank you
In December 2012, my husband started chemo for multiple myeloma and was doing very well. In March w/addition of Revlimid he started going downhill fast. He has lost ~ 70 lb, has chronic diarrhea, low potassium (despite K supplement), very low blood pressures (despite meds to raise it), can't eat - everything goes straight through, needs IV hydration every 3-4 days. He is so weak, has no muscle strength and has severe peripheral neuropathy in lower legs and feet. He has been off all chemo for 7 weeks and there is no improvement. Doctors are all puzzled as to what is happening. A colonoscopy, CAT scan, swallowing study were normal and except for potassium his chemistries are in normal range. Has anybody ever heard of these symptoms and what could be going on with him? We are running out of questions to ask the doctors and I feel he may be running out of time.
Emma has melanoma and was supposed to already be gone. Tumors are all over her body, yet with radation she looks good while the tumors continue to grow. Dr says any day...
I am in the middle of strong chemo for stage 3 ovarian cancer. I had just come home from Sri Lanka and India and looked so healthy that people were saying to me "you can't have cancer, you look too healthy".
My attitude is "I have cancer but cancer doesn't have me". If my life changes dramatically after my chemo ends, I will look back on the good time I had before cancer and do as many of the things I love to do after cancer treatment. Ovarian cancer has a low cure rate, but the remission rate has gone up. I will take remission even though I am likely to have a return of the cancer down the road.
I'm finding living with cancer (bowel) difficult, and I can't find the support I need. At present one of my concerns is depression.
I am in my third year of treatment for multipy meloma. with several chemo's I am now on a pill I take at home. My prognosise is bleak but someone once told me believe in the diagnostis but not in the prognosise! Never give up there is also hope.
I have BAC lung cancer ex in oct 2010 and given 3-6 months. I am still here on chemo (Alimta) every 3 weeks. I have no pain but a cough sometimes w/phlegm but recently without. I attribute my quality of live to quite vigorous exercise 3xweek. Weights for arms legs. 200+ sit-ups mixed with elements of Tai Chi and yoga. Daily swim and walks. All on oxygen 24/7 level 2 which gives me oxy sat levels of 92-95. Morale is good, I travel, love life, every day is a gift. I don't see myself with a terminal disease. Carpe diem ! Would love to hear from other BAC sufferers and what they do to say as fit as possible. Thanks
Well, here I am again. Third bout with breast cancer. There is a great decrease in quality of life. A few being less socialization due to fatique, Less get togethers with family, do not feel like cooking or eating, I am doing less at church, and not to embarrass anyone but what about sex. I feel guilty about all of them but just do not have the energy to be excited about. Of course, there are many more decreases in daily activities. I am not just sitting but I am not enjoying the way I used to do because it is such an effort. I used to call on the nursing home folks, volunteer in the hospital auxillary but I am no longer dependable. Those are real losses of quality of life. I do not mean to be negative just telling it the way it is. Yet people look at me and say if we did not know you had cancer we would never know. How does one answer that. I feel it is expected of me to wear a smile all the time.Pain is present almost every day. I have pain pills to take but I do not want to get addicted so infrequently take them. Yet, quality of life is what I have and make of it. Apparently, this is my life now and I must learn to overcome my losses and replace them with something else like calling the people, cook simple meals, read a book. Hope you are all handling it better than I am. God Bless
I just completed a year of treatment for mesothelioma. I have made a good recovery from surgery, radiation and chemotherapy. Realistically I know I will never be the same and have the energy level I once had. When I completed radiation and gave myself a month to feel better, I joined a local Y. I take part in all activities offered to the senior population. I resumed the practice of yoga and recently Feldenkrais as well. I started doing I Rest meditation for relaxation. I have gone on some nice trips since joining. When I am there I can purchase a nutritious lunch which I eat wit with others. This Y fulfills my physical, social and mental needs.
all in one place. For this I am very grateful. I know mesothelioma is not curable and has a poor prognosis but I am trying to enjoy and add quality to whatever viable life remains for me.
"Life is God's banquet. Taste every bite!"
Been living with breast cancer for 20 years, have been on & off various chemos for many of those years. Have exercised, eaten well, tried all the " healthy alternative " things over the years but the fatigue has never lifted. Now that I'm stage 4 & it has metastasized all over, I said " screw it ". I now take 10 mg. of adderall daily and it's wonderful. I finally have energy to do the things I love & spend time with friends before my time runs out. I am sharing this info. with the hope that it may be of help to someone else.
For me all life is precious, I do not have a "quality of life measurement" I want to live as long as I can no matter how painful
linda,your reactions are like mine. Cancer changes your body and your worldview. There is no pill for that and people do not get that. Cancer is a 'mind disease'.
It's really confusing when you don't have a bunch of time but you feel fine. Very confusing to others.......and to myself as well.
I agree with all of you and wish you all well ..my family does not understand ...and as a physician people think that for me then things should be easier ...and I was the most disappointed by the lack of support from my physicians ..and I told them that hoping that they will better understand their patients ...
I have the same problem with family members. I have Carcinoid Syndrome, it is a chronic cancer. I am getting my symptoms treated only. Since I look ok on the outside, they think that nothing is wrong with me.
I am post two years from chemo and seven years from diagnosis. I think my biggest stress is finacial and health insurance. Health care should be an afforable right, to everyone, not just those that are healthy. I am hoping that the health care exchange will be something that is finally sensible for someone like me!
I think that the family doesn't understand how, even after "treatment" is over, the cancer patient is just that, a cancer patient, for the rest of their lives. Now that I am a 3rd time "cancer patient", I have learned a different strategy. Before, I had a "woe is me" attitude and suffered from horrible depression. A few years back I was finally prescribed anti-depresents. After I recently completed 1 year of chemo, along with major surgery, for stage 4 ovarian cancer, I wanted to "cleanse my system", stop all the drugs. Well, I did, and it was a bad idea. I do not take "happy pills" (as people referred to them as) but it prevents me from spiraling out of control, focusing ONLY on my cancer and the weak statistics for myself. I am back to being "normal" and live life as I can. Yes, I suffer from fatigue & stress, but I live my life on MY schedule.......I read a lot, clean when I feel like it, am not afraid to say NO if I am not up to it......I also have a journal book, it is my release without whining to anyone else. My sense of humor is back, the journal was bought at the zoo, made of recycled panda poo.............so it is my book of Sh@#$y thoughts! Stress relief!
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