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Many of you who have written to this blog over the past few months are dealing with the cancer stigma, the negative aspects of a cancer diagnosis. Some words that you have used are "isolated," "lonely," "shunned," "weary" and "abandoned."
Some of you have mentioned losing the support of family, friends and co-workers during the experience. It seems that we are at a critical point in time between the days when the word "cancer" was not used in everyday conversation, to a future day when the word is followed by support, love and care. I have hope that with additional education, science and technology; the cancer stigma will be no more.
Some ideas that might help you as you talk with others and deal with the aspects of a diagnosis of cancer.
Today, there are so many ways to communicate news and progress between family and friends. Social media tools such as Caring Bridge, blogs (such as this one), and online support groups are also helpful. Please feel free to share your thoughts on how to positively deal with the stigma of cancer.
Sheryl M. Ness, R.N.
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Update to my August 5, 2014 post: Still no regrets. Every time I am tempted to tell someone, I pull myself up, rein it in, forget about it. No matter what the pink people say and do, there IS a stigma and once the cat is out of the bag it will not be put back in.
It is probably not for everyone, but I have no regrets yet for having informed very few people about my breast cancer. It was stage 1A, so it was easy to pass things off as just surgery and recovery. My husband and some old friends who live on the other side of the continent know. That's it, except for medical people. Yes, sometimes it gets lonely and feels isolating, but almost certainly not as much so as if I had told everyone in sight and had to put up with their shocking reactions as described here and elsewhere. Very glad I kept my mouth shut, and every day I reinforce that decision by continuing to keep it shut. Period. End of story.
I was diagnosed with grade 2 meningioma in January 2009, had a cranioctomy in Feb 2009, which left me with no mobility to my left arm and leg. I have since started walking again but with a terrible limp (or drag would be a better word). I know my limitations may be worth a stare or three but I've had to come to terms with the fact that I get more attention than I want or am comfortable with. My counterattack= "PUT ON A HAPPY FACE!" A new top with matching head scarf, some mascara and lip gloss and I can handle the stares. Bring it on!
Debby, I felt compelled to write you. My husband was diagnosed in June with stage 4 colon cancer. We are anxiously waited to see results of scan next week. First and foremost, we are Saved. Second we must fight. Saturday my husband will be 53 and we plan many more! You will be in my prayers Debby!
debby it sounds like your husban has the same kind of canncer that i have. I just turned 71 and last year found i have stadge 4 cancer. collen to the liver.
first i had a resection of the collen takeing out the primery tumer. then ten shots of chemo. they left the liver tumer in to see if the chemo would schrink the tumer which it did. then i went to jackson memorial in miami and a great sergen Dr levi went in and took out half my liver. it was in a bad place and i had to find the head of the sergical dept. which Dr LEVI is. he teaches at miami u and after sergery i wake up serounded by his 4th year med students.
its almost a year i still have the port but i feel fine. I gained back the weight i lost from the chemo. my sister found some pot for my nas. it worked better then the pills they gave me.i visit my oncol every three weeks for blood work. i dont think at my age i would go through the treatment again.
life is short and i do today everything i like.
thank God obama care has not started yet. go republican and repeal his med bill
Bruce, I was a therapist at one point. I started a support group one time by placing an announcement in the local paper. First find a place like a community center, church, or cancer org. that will let you use their facility. I also lead several groups while working on a psyche unit. Each group is different because of the individuals in the group. Some flow better than others. If leading the group first ask what the members want to discuss. Try to have a topic each meeting. A meeting every 3-4 weeks is probably best. Encourage people to express themselves only if comfortable in doing so. Even though difficult topics were discussed I always tried to bring out some positives and point out positive things that people were doing. (You don't need to be a therapist to do this). Pointing out positives can help others improve coping skills. Try not to let people be negative all of the time. Asking people to rotate bringing a treat might help break the ice so to speak. I always tried to emphasize that the group was the member's, not mine. Good luck with your endeavor! There is research that states that people who have participated in support groups fare better with their cancer. I do believe that support from other's really helps at a difficult time in one's life.
I am wondering if Deb found information with her husband's colon cancer. I am a colorectal cancer survivor and although every situation is unique in its own way there are similarities under the BIG C heading. I don't have a support group anywhere near where I live so I would consider even starting a group. I'd like to talk to someone who has taken a group from ground zero so as to have an idea what to expect.
Howdy - For all of you bloggers, here is what I live by each and everyday....ATTITUDE IS EVERYTHING and
"We are each a gift from god, what we give back to god is our gift to him"......FAITH*HOPE*LOVE
Surround yourselves with POSITIVE things, people and tasks, remember, anything that depletes you of strength and energy, is less than you are giving to yourself and a healthy body mind and spirit will prevail with good.
So many wonderful people out there and I commend you all for your stories and support and inspiration you choose to share with one's that read or comment on this site. As Phil says, talk, talk, talk....yes we all need to be heard in one form or another and some people just choose NOT to even listen or really "care" as to your feelings, because they just don't care ( or are dumbfounded as to how and what to say and would rather push you away)...but it's the one's that do care that can offer support, stories, humor and an over abundance of love and laughter to help us all thru our "bumps" in the road.
Erma Bombeck, Chicken Soup for the Soul and anything funny will immediately pick your spirits up....and laughter truly is the best medicine! :-)
We each only have one life, earthly, there are no rewinds, no playbacks and no re-do's...but we learn from what we have done to improve our now and future lives!
Dorothy, I as well have had on going surgeries with post reconstruction and like you am close in age. Diagnosed in 2006 and now 4 years later I'm still not finished. A major problem with first hospital and thier plastic surgeons, my advice, look around, educate yourself with what is available, on-line, references and pictures, doctor's background and PUSH them to show you the results. Each individual is different and if you have a doctor that is truly interested in YOU as a patient and person to get you back on your feet and on with your life, that's the person, also look at the facility, location, care and concern as well as impecible surroundings tells you you will be well cared for. You will not just be a number to them.
I am researching now, after a dbl mastmy, major radiation and chemo, expanders, I'm on my second set of implants, a tram flap that failed, an infection from the last hospital, and now needing a replacement for my right breast (where infection was and spread to my breastbone area, as well as tram site), and to think I was told a simple breast implant surgery could be done initially, and was, but not correctly, hence why the plastic surgeon was let go from that hospital. My last option because I have now ran out of areas to take blood supply from, is my dortisimuss area, below right shoulder blade.
All of the above could have been prevented however I was undergoing a divorce at the time, running my own business & complete turmoil then.
I was diagnosed with Pancreatic Cancer. And had surgery at Mayo in Rochester. My advise to others is to go right away to a good Doctor because an early
exam is very important. Do not wait..
If you are suffering from cancer, or recovering from the effects of treatment, it can be very helpful to join a support group. But what if you can't find a suitable group? Start one yourself! That's even more effective. The hospital treating you, or where you were treated, can probably arrange to put other patients in touch with you, and there is your group! One of the best breast cancer support groups in the south of France was started by a friend of mine who was finding it difficult to recover, mentally and physically, from a radical mastectomy, and I made the suggestion through her daughter: "Start your own support group". Within about a month it was started, and she was well on the way to improvement. I helped by constructing and hosting a website for her; have a look at www.ensemble-c-tout.org. Incidentally, the "c" actually represents "the big C" - Cancer.
I just read the last few posts. I think having a strong faith and trusting in God is what helps the most. All through this I have known that God is with me. I try to find quiet places to meditate such as by a lake or garden. How can one not believe when one looks at nature. I feel that I am still supposed to be here for some reason. I may never find out specifically why but know it is in the plan. I hope for peace for all of you in your challenges. The lesson I have been learning over the last year and a half is to truly appreciate the people in my life and gifts that I have been given. I believe we are all here to help each other out in some way.
My husband has had cancer surgery 6 times. In 2004 he was diagnosed with prostrate cancer .In getting ready to have the surgery they found caranoid cancer of the lower lobe and renal cancer. The problem was what to operate on first. They finally decided to do the kidney and prostrate first. This was a 9 hour surgery. After six weeks he had his lower lobe removed. In 2007 they found bladder cancer and removed it. A year later another one and today he has to have surgery again for another bladder tumor. This man has had 4 primary cancer and never complains. He has a postive attitude and has handed this over to God. I being his care taker find it a honor to be his nurse and helper. I try to educate myself as much and possible. We both strive to be kind to all especially our Medical Doctors. We are retired military and use the base hospitals in San Antonio and have nothing but good to say about the treatments we have received. My best friend is going thru Lung cancer and has small cell. She has good and bad days. She rides her horses and has fun with her grandchildren. Like somone said all of us our ternimal. Make the best of this life with kindness and thankful hearts so when you leave this mere time here on earth you will go to a better place.
Hopeful, I don't know what my husband would do if he was dealing with your treatment. I had stage 0 non-invasive cancer, and I didn't have to have any kind of treatment after my double mastectomy. Its the reconstruction that is giving me all the problems. Infections and taking the extenders in and out. Its been seven months and I'm still sitting at the begining. Maybe surgery again in two months.
Maybe someday my husband will face all of this and we can get on with our lives.
Hopefull I will be praying for you, I know God has really been there for me and without him I would not be able to handle this mess with my husband. I carry a card with me all the time, even in surgery that is Isaiah 41:10. Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. God bless you
I am a 49 year old that was diagnosed with breast cancer and underwent bilateral mastectomies, one prophylactically, chemo and radiation with treatment completed approximately a year ago. I am about to start the journey of reconstruction, and have been told despite the radiation that I am a good candidate for implants. I have read previous writers comment's, with people having ongoing problems post reconstuctive surgery, what are they and do you have any recommendations?
Also, at the time of diagnosis I was not in a relationship. I read of the difficulties that spouses have with a partner undergoing treatment, is there anyone that can comment on "getting involved" after breast cancer, recommendations and approaching the topic.
we just found out my husband has stage 4 colon cancer. It has spread to his liver and limphnods. The only one good thing that come out of this is we were both saved Tuesday. and that makes it a little more bearable. Does anyone have any suggestions on how to handle it from now on? He had the port put in today and Chemo starts Tuesday. Someone help please.
Such openness from so many special people. The sharing is appreciated. I see strength in all of you. I noticed Linda's comment about her husband. Has anyone else had issues with their spouse? My husband has been depressed. He lost 30 lbs., close to what I lost with my cancer treatment. He often goes off by himself and reads a book at a time when I would like to share more time with him. I know it is his way to deal with my poor prognosis and stress of all of this. Sometimes people pull back because they are having a difficult time with their own emotions. We open up at times which helps. Here lately, he's been doing a bit better. He refuses to take an anti-depressant that was prescribed for him. I am trying to live for each day. If I think of how it would be in his shoes I can understand his grief. I always say that ultimately it is all up to God. After extensive chemo my PET scans for lymphoma only showed continued progression. A planned stem cell transplant was cancelled due to my poor response. I then had radiation which has helped me alot but the cancer is still present. I was told the rad. likely won't take care of it totally. I read the comment about employment. I have not worked in over one year. I worked for the govt. which is a good employer. In my job I was exposed to other employer situations where people were "let go" of their jobs because of their cancer even though it was not stated why to the person (concerns of insurance issues
Thank you TLC, I went to my plastic surgeon this morning and he told me the same thing. I need to make a appointment with my Dr and ask her all the questions I have. There is just so much. I have had so many problems with my reconstruction that I just hadn't thought about going to my Dr. But hopefully it will all be over in the next few months.
Work didn't come up in too many of the comments already made so I will add some thoughts there. I was daignosed with IDC breast cancer last year, and took some days off here and there through surgery, radiation and chemo. I was able to work at home during chemo and by all accounts of the medical staff I sailed through chemo and made a quick recovery to strength (not to normal but to strength). When I showed up back in the office with my new size 2 business suit and wig, that's when the discrimination began. I was constantly being asked if I was OK, and within three weeks I was forced onto a FMLA leave to "go finish getting better" because I was "distracting to the rest of the staff" and now they have fired me. My performance never faltered during my illness. I very much feel that cancer didn't change me, it changed them. Nice philosophy but I am frustrated and angry at their attitude and want to suggest that the bosses divorce and financial issues are far more distrscting than my cancer! Thanks for letting me vent.
My husband got diagnosis of Breast Cancer in April of this year at Stage 1 , they seemed to have gotton it
all , but having a hard time dealing with it.....they say it's rare that men get breast cancer and he would really like to talk to some other guy that may be going through the same thing, so if there's anyone out there that can help him please let me know, I would greatly appreciate it !!!! He is going through 6 chemo treatments........... Thank You so much
I think the thing that helped me the most was to live in the moment but also keep working on the things I had started when diagnosed. I had dreamed of going back to school for close to 10 years and the fall I started back I was diagnosed. Some family and friends tried to tell me to quit but I just knew that if I gave my dreams up then the cancer won so I kept going even though it was really hard.
Though there have been times when I don't think that anyone who has not been on this journey could understand how I feel, I try to embrace my emotions, feel them, cry or get mad or whatever seems right, and then remember to think of all I have to be thankful for. I also have been seeing a counselor who is my safe person that I can tell it all to. It has helped. I also have been absolutely consistent with my different kinds of exercise; physical, emotional, and spiritual.
Linda- you need to set an appointment with your doctor and ask for a written plan for the next 5 years so you know what to expect. You deserve and have the right to know this.
I finished my radiation treatment in April and went back in July for my next shot and blood work. My PSA score was 0.12 much better then 147.2. My body has accepted the hormone shot and I`m in remission. I`m just dealing with the fatigue and hot flashing. As long as I wake up that`s a GREAT day. I go back in November for my next set of testing and blood work. Wish me luck. I do talk about my condition to family, co-workers and friends.I feel that this gives me confidence that people do care and support you. I`m 45 and had a rating of 10, the doctors said this was very aggressive and they could not do surgery.I`m working full time and keep on trying to keep that positive attitude at all times, its hard at times. You think about your wife and kids and life in general. Talk, talk, talk, that is the best thing to do. I hope everybody the best here and I`ll PRAY for you all..Phil
I had dcis non invasive cancer with double mastectomy in Feb. I have two problems, 1st my husband has changed so much, he was once a very affectionate person and since my surgery does not come close. He says its because he is affraid he will hurt me, but I have been healed for months. We are living a totally different life.
2nd, I feel kind of lost, my Dr's have not explained to me if there is anything or test each year to keep on top of all of this. Not sure what to do.
Nancy - Thanks for the title of this book. It sounds to be helpful and just what I need right now.
Do other folks feel as me that, having cancer, you seem to be a little bolder with voicing your opinion at times?
Having cancer certainly gives new meaning to 'future' and truly enjoying each day. What surprised me most is a few of my dearest friends no longer talk with me like we did "BC" (before cancer). I take the lead with many folks, including my friends, keeping conversation light and retain my sense of humor and sense of optimism.
I also tire of always seeming to talk about my cancer - since we live with it 24/7 - so it helps to talk to people about what's going on with them; that helps them cope with you as well.
Having cancer forces you into a new normal, and, frankly, I like the person I have become. But I don't embrace the outcome. Find an inner peace.
I have lived through non hodgins lymphoma and was cdeclared cancer free.
Shortly after that declaration I had an annual physical including PSA. the long and short of that was I am now diagnosed with Prostate cancer for which I am now receiving treatment.
My first reaction after finding out I had another cancer when one was declared gone was an incredible anger because I was so looking foreward the the cure after five years.
I had to share that anger and somehow befriend this new one. Being open and sharing good knowledge with others is so helpful. I had to learn that I am in control of my own life and get on with that life. Life is good. When stuff happens somehow we have to plow through it in a daily positive outlook about life, a life which is in my control.
So now I am at peace with this cancer business and I keep it in its place and deal with it when I have to. Otherwise life goes on as usual. Good knowledge and trust in the team that looks after you is so important. Life is too precious to let cancer take over.
there are so many myths and stories going around about cancer. Good information is healing for all.
You have to just go on living. After all, Everyone is terminal. None of us know when we'll die. My latest stress is the surgeon telling me that the cancer in my neck is dead, but I CAN STILL SEE IT AND FEEL IT! He left it a bit up in the air, and now we're playing a waiting game, so I'm sort of in between doctors and don't know what's going on right now. I need a new prescription for my happy pills, but as I'm not really seeing a specific doc right now, Who do I ask? Not a big deal, just another grain of sand on the camel's back. My heart goes out to you, Hopeful, I wish you peace of mind.
I agree that those around you take their cue from how you accept and deal with your diagnosis. A book that was a great help to me when I was first diagnosed 3 years ago is titled Help Me Live: 20 things people with cancer want you to know by Lori Hope. The author is a cancer survivor herself. Nancy
Living with the stigma of a cancer diagnosis can be a challenge until you learn to accept the diagnosis yourself. Does this make sense? People will often bombard you at first. Some others stay away not knowing what to say or out of their own fears. I found that by being open about my disease it has allowed others to feel more comfortable and to treat me more normally. I also found that by asking people about their lives (positive and negative) it has helped to allow a more normal discourse. Joking also helps others know you are not depressed all of the time. Certain friends are better than others to tell the hard parts to. I have been open with my nieces and nephews about what I am experiencing without being overly specific. I also told them what I am thankful for. I think that when they saw me go out in their kayak (even though I could not paddle far) I set a good example. Try to live as normally as possible so you are not just thought of as a "cancer" patient. I found that wearing a wig also helped. Most of all letting others into your life at a difficult time helps most of all. It helps all of us get past the stigmas. (P.S. This advice is coming from someone who has been told they are terminal. However, I am in somehwat of a remission currently. I tell people I am terminal. It allows them to share with me time and precious moments. The stigma goes away if we learn to accept where we are at in life).
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