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A while back, we had a discussion about grief and dealing with a terminal diagnosis. Many of you shared your perspectives on having a terminal diagnosis, the grieving process or the death of someone you love. It seems like another discussion on preparing for death might also be important.
Unfortunately, the word "cancer" can bring unwanted fear and anger — emotions that either you or those around you might experience. We all know that we will die some day. It's just that the exact circumstances (when, where and how) are unknown. However, rather than deal with this idea with fear, why not treat this as a time to think about living and dying with the idea of compassion and kindness for yourself and your family.
It's true that most people don't want to discuss dying, but if you're interested in finding some peace for yourself, you might consider a couple of these ideas:
My wish for this discussion is to give you the freedom to reflect on the idea and talk with others about what you need.
Sheryl M. Ness, R.N.
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Last November I was told I would live 1-4 years with an emphasis on getting me through the first year. I had wondered why I was so ill but pushed myself just as hard as before. My doctors were kind, compassionate and concerned--there is nothing to be done. The only three people who knew were all there when my body crashed and I ended up in the critical care unit. I told no one until I adjusted and secure with how I felt and what I needed. I told my family 2 months later. Each had a unique reaction. This is when I felt lost. I was fine, now how do I help them?! I'm still me! Truthfully only two things have changed. I cleaned my office for one. And I'm learning to deal with my fiance's fear and grief. Reading your posts is helping me to help them. Although I know none of you, your experiences and important to me and I am sharing the lessons with my own loved ones. Thank you for sharing.
I have lost three beautiful souls to breast cancer. But, I found joy and peace in the Lord.
Breast Cancer: A Wife?s Brave Journey
Finding Peace in the Storms by Yinka Vidal, published April 2013, by Lara Publications, 245 pages, Ebook, ISBN # 978-0964-081857, available at Amazon, Barnes and Noble, $8.99.
The Story Behind the Book: In 1976, while I was in college, I received very devastating news that my most favorite aunt had died of breast cancer. For many years, I was silently agonizing over this unexpected death of this wonderful woman I loved so much. I could not discuss the emotional pain with anybody. Years later my aunt?s daughter died of the same disease. My emotional pain I had kept secret for year reignited. I refused to discuss the issue with anybody in the family. Even in 2013 when I mentioned my aunt?s name to my senior brother, he asked me why I never mentioned her name over the years. He was unaware that I was secretly burdened by her death for so many years, hidden in the depth of my soul. Early in 2013, my hidden emotional pain not only resurfaced but reignited when I was confronted with a church member who was battling the same illness. This time, I was not running. I have to fight the fear this illness has inflicted in my soul over the years. These events motivated me to write this book. In the process, I learn to face the fear of dying with grace, and to destroy its emotional poison!
God bless all of you. How can I be a strength to my precious friend who has stage 4 liver cancer? She has had breast, colon and lung cancer also. After 8 years walking through this with her, I am honestly at a loss on lifting her up. Today I am speechless.
How doI cope with my wifes death just recently
This morning I woke from my sleep to pray. It was not for me to know you but to feel your cry in my heart. Know you are never alone and I asked the Lord to give you the peace that surpasses all understanding. For you have not recieved the spirit of fear but of love, peace and a sound mind. I will keep you all of you in my prayers and lift you up in Church today. This is the day the Lord has made I will speak life unto your body and you must also. It is difficult to go by the what is seen but know that what is seen is only temporal and what is not seen is eternal. So from the top of your heads to the bottom of your feet I ask my Father to restore and renew your mind, body and soul. Live and speak life unto your body as I have he finds favor in all of you and loves you.
I was first diagnosed with Stage III Breast Cancer in April of 2006. I had the radical mastectomy, chemo, radiation and a total hysterectomy. I just celebrated my five year mark. But now, my doctors have found a suspicious lesion on my spine. I went for a PET/CT Scan and it lit up - hot spot. It's grown 2 1/2 times the original size in the past 6 months. I tried the CT Guided Needle Biopsy with inconclusive results. Now I have to have a surgical biopsy. I am so scared that I don't know what to do with myself. I'm trying to put on that I'm fine with it when I'm not sure whether I really am or not. I feel so alone and am hesitant to talk with my family/friends about my fears because they are so afraid and remember how adversely my treatment affected my body. I don't know. I guess I'm rambling. Found this blog and felt that maybe just ranting a bit might help. I feel for each and every one of you. I thank you for sharing your stories, fears, thoughts and hopes. It means a lot to me and, I'm sure, to others in our same positions. You are all in MY prayers and I hope you will hold me in yours as well. God Bless and Godspeed.
Dear No name given, I am so sorry that you lost your husband to Progressive Multifocal Leukoencephalopathy after going through his lung transplant. You both have endured more than anyone expects to have to endure in life. While this condition is rare, I thought I would share one resource that may be helpful. The National Organization for Rare Disorders (NORD) has a website (www.rarediseases.org) with a connection to patient and family networking wupport and resources. I hope that this connection might help you to find others who have gone through a similar experience.
My husband didn't die from cancer. He died because he contracted Progressive Multifocal Leukoencephalopathy after a double lung transplant here at Mayo in Rochester. His death was just a few days after his one year anniversary and one day after his 62nd birthday ... on April 28th, 2011.
I blame no one. His Doctors and nurses were incredibly caring. I accept that it was the path we were given and that his death was a blessing for him
What's hard for me is that there has been very little after support. And, PML is so exceedingly rare that there's no one I can talk to. I haven't even been able to find anyone online despite searching CarePages and CaringBridge. It's just too rare. We learned to hate that word *rare*. So much of what happened to him after the transplant was *rare*.
I am good friends with the wife of another lung transplant patient who also died. She lives far away but we keep in touch by phone and e-mail and our Carepages and Caringbridge pages. We're support for each other and I'm greatful! But I wish there was someone I could talk to about PML. It's a horrid virus that destroys the brain ... taking speech and movement and balance and eventually the ability to swallow. It makes communication over the last months almost impossible so all those wonderful suggestions on how to make the last period as good and peaceful as possible were a waste for us. We did our best though. He was incredibly expressive with his eyes right up until he went into a coma.
January 28, 2012
Shortly before Thanksgiving, my father was diagnosed with stage 4 melanoma. On December 12, after an unsuccessful series of radiation treatments, he told his oncologist he would NOT undergo chemo. In just these 2 weeks he has slid quickly.
Even with hospice support, we feel so lost. He is agitated and delirious. He obsesses about money and what everything costs. (Yes, money is tight. It is a travesty that in America, senior citizens must die worrying about expenses of health/death care! But, that is another topic.)
We don't know how to help him be calm. This is NOT the quiet, sad but serene passing that we imagine from movies and pictures. I'm sorry for venting but appreciate the forum.
What we fear most is the unknown, but it does not have to be that way. I was diagnosed 11-18-11 with advanced (stage 4) cancer of the tongue. The tumor is/was so large it prevented me from eating solid foods unless going through a blender first. The best thing I did was deal with the “death” issue up front. It was a very real possibility, because they could not find the cause of my throat closing up even to the point liquids were becoming difficult to swallow. A CT scan finally revealed a very large mass and the subsequent biopsy confirmed cancer. The Dr’s at Loma Linda said “the tumor is too large for surgery” and could do nothing for me. Also I was told “if you respond well to chemo, it will be your only option”. It put me in a place that death needed to be considered. Yes it is scary, but loses its power when you deal with it up front. You actually need something bigger than yourself, bigger than death to overcome the fear. Do you believe in God? There are many gods, but only the Creator can hold death in His hand. Are you in His hand as well? If you are, then you are safe and know a Peace that makes no sense. It is not about religion, it’s about relationships. In the beginning He created a relationship with man and woman, not a church. Your relationship to Him and others around you is most important. His Presence is in the Love you share back and forth with people. That is His design. Truthfully seek Him and discover the Peace that awaits you.
Was just diagnosed with advanced renal cell carcinoma spread to lymph nodes in my chest and abdomen. This diagnosis came from investigation on why I was so anemic. Alot of tests that were negative and then iron infusions did not work, so doctor had me have a CAT scan, which found the large mass on my kidney. I really had no symptoms except the tiredness from the low iron. They can't tell me how long I have had this or even a prognosis. They want me to take a chemo oral drug called Votrient. My mind has been spinning on whether to do treatment or not. I don't feel like I have cancer. I only feel it in my mind at this point. Alot to deal with and my mind is spinning with what I should do. I am currently waiting for preauth for the drug thru my insurance. If the copay is high I cannot afford it. My husband's hours at work this year were way down and we are already struggling. i don't want to burden my family with more bills and then what if it doesn't work. I am going crazy thinking about this and knowing what to do. I am scared of the side effects of the drug as I don't want to be a burden and financially I need to work. Isn't it sad that in the US people worry about how much a medicine will cost (at least I do) instead of worrying about if it will prolong my life. I am not afraid of dying, I just worry about my husband, kids and sisters and brother more than I do myself. I am so glad I found this website so I can at least express my feelings.
I feel alone in this process. My 19 year old brother is dying with a malignant pheochromocytoma. He was diagnosed in March 2011, and the prognosis was not good. He chose early on to not do chemo, which according to doctors, would prolong his life. His actions made me angry, I felt like he quit, he didn't love us enough to fight for his family. I saw him get well, and them he chose to not be seen by doctors anymore, or to talk to anyone. WTH, I thought. " You are only 19, you can do this!" Then Mom and Dad began to ask him daily to eat, to drink, to take medication, to not give up, to try, and to live. I saw him and his body say no, I'm tired, I'm scared, I don't want to hear it, I'm in pain, I hate this, stop. He is in his final days, everyday he gets worse and looks worse. Today I listen to him, but I feel like nobody else does. I pray for him to find peace, he doesn't talk or want to share anything, why? I don't know, maybe because nobody wants to accept the prognosis. Mom and dad are wanting him to eat, drink, to take medication, to try, to live. Stop! I want to yell, but I can't everyone would hate me. I am alone on this one. His our baby brother (we are 6 total), I get it, but why? Hospice doesn't help when we refuse it. My parents feel guilty talking about it, it means we've lost hope, but we havent. I wish they just listened to him, "no more food, I'm sleepy, I'm tired, I don't want to hear it." I don't now exactly what he wants, but I'm here...I
I would just like to say that everyone of you are in my prayers. I have not been diagnosed with cancer but my grandpa was today. i know nothing about it other than it's in his liver. i have never been close to anyone with cancer so this is all new to me. In a weird way, i feel guilty for being healthy and some of you below are not. WHY?? I am a christian and i understand "God has a plan", but why would he plan for people to develop such a disease? And why do people who are healthy eaters, non-smokers/drinkers get it when people who live so unhealthy don't? these are questions that i'm sure we all have that we will never get answers for. I just want you all to know that some of us non-cancer (Yet) folks really are touched by you and are praying for your recovery. i don't care if it depresses your family or not...you tell them you are talking about it because you NEED to. they should be quiet and listen. ALSo, we are all living in "limbo". None of us know what our prognosis is. A stage 4 cancer patient could outlive me. GOD BLESS all of you. i love you.
I've lost my husband and my daughter within 4 mo's of each other and its something I just can't seem to get over. I miss them both very much and her husband is having a hard time to. Just would like for everyone to pray for me, as I know God answers prayer because he has answered a lot of mine. I just can't seem to let things go. Love in Christ, Ilene
It is the middle of the night and I am online because someone I know is dying and I am dedicated to be as available and present for him as I can possibly be and so have been looking for some wise words to guide me. I am a part of the family and friends group, the ones who are confronted by our own mortality and the anticipation of the loss of our loved one which in combination is almost unconfrontable at times. All your comments are such a gift. I move from entry to entry fighting back tears and in awe of your honesty and in so many cases the extraordinary courage and love your comments represent. I am a stranger to each of you, but your sharing has touched me deeply and if there is any message I take from all this it is that the facing of the end or the possible end of one's life need not be a spiral down into an endless abyss and that the gift of the living is to be fully present for those in the process of passing ahead of us. Elizabeth, thank you for your words "DO NOT THINK OF DEATH AS A PREDATOR IN THE NIGHT IN A GHOSTLY BLACK SHROUD; BUT A HEAVENLY ANGEL WHO WILL PICK YOU UP GENTLY AND CARRY YOU OVER TO ANOTHER WORLD WITHOUT PAIN AND SORROW." My father died of cancer when he was 54. I was holding his hand when he passed and that was exactly what it felt like. An angel had gently lifted him and carried him away and I knew, in the end, he was not afraid. Thank you all and I hold all of you in my heart. Your words are the gift of guidance I was looking
Please, please families and friends, talk about it. I see all to often when you deny the existence of any disease process only to regret it later when your loved one is gone. It will help you and it will help them. Make peace now. For those who love Country Music, I suggest you listen to the words of the song by Tim McGraw, "Live Like You Were Dying". Please note that the first word is "live". My love and prayers to all of you.
Elizabeth, you are a precious soul! Your words are beautiful. Blessings to you. :)
A YEAR AFTER LOSING MY SON TO KIDNEY CANCER IN 2009, I WAS DIAGOSED WITH PANCREATIC CANCER AND GIVEN (WITOUT TREATMENT) OPTIMISTICALLY SIX MONTHS TO LIVE. AFTER SEEING THE SUFFERING THT HE ENDURED I ASK FOR PEOPLE TO PRAY FOR ME TO HAVE AN EASY PASSAGE, THAT I WAS NOT LOOKING FOR LONGEVITY. I FELT AT PEACE AND READY TO GO. I WILL SAY THAT I AM 77 AND FULL OF LIVE AND ENERGY BEYOND MY YEARS. I DID TAKE 30 RADIATION TREATMENTS AND THE CANCER IS NOW "STABLE" AND IT IS AUGUST. I DO NOT DREAD DEATH. I DO RESENT THIS UGLY PARASITE THAT IS WAITING TO TAKE MY LIFE..AND I DO DREAD THE PROSPECT OF THE PAIN I SAW MY MOTHER, SISTER, COUSIN AND SON GO THROUGH. SO FAR , I HAVEN,T EXPERIENCED ANY SYMPTOMS OF THE DISEASE AS I FOUND OUT ABOUT IT QUITE BY ACCIDENT. I UNDERSTAND THT MANY PEOPLE ARE NOT DIAGNOISED WITH IT UNTIL JUST A FEW WEEKS BEFORE DEATH. I DO THANK GOD DAILY FOR THIS TIME OF BEING WITH MY FAMILY. A BEAUTIFUL TIME. THE GRASS HAS NEVER BEEN GREENER, THE SKY BLUER OR THE FLOWERS MORE VIBRANT. I WILL PRAY FOR ALL OF YOU. I DO NOT NEED TO KNOW YOUR NAME AS GOD KNOWS WHO YOU ARE!!!!DO NOT THINK OF DEATH AS A PREDATOR IN THE NIGHT IN A GHOSTLY BLACK SHROUD; BUT A HEAVENLY ANGEL WHO WILL PICK YOU UP GENTLY AND CARRY YOU OVER TO ANOTHER WORLD WITHOUT PAIN AND SORROW. BLESS YOU ALL.
For Julie, Do not be afraid to obtain a second opinion. I did after another specialist of mine said I should get one. I initially had an oncologist that would not even call me after my case went before a tumor board after my cancer kept progressing. My phone call inquiring about the conclusion of the board was not returned. I stopped in her office and she was too busy to talk to me for a minute. I was then told by a receptionist the next day on the phone that I needed a biopsy in my neck. I obtained a second opinion and transferred my case to a well known and respected oncologist at a leading medical facility. He said the spot on my neck area was likely only sinus drainage (It was). He proceeded with other treatment for me. He has called me at home 3-4 times during the last few years when he felt he needed to discuss some findings with me. Nurses do not always know the whole story. Trust your gut on this one. I am here today because I switched oncologists. I have received palliative care. It does not necessarily mean you are terminal. It is a means to alleviate suffering and pain from the cancer. It can be used on people who have a chance of recovery as well as on those who are terminal. It has helped me immensely. Good luck!
After reading your post i agree it is a time to make request.And try to finish up,ya right.He has been crying ever since the doc told him.I can't even speak of it to him myself.It's been 3weeks now,since the biopsy.We are still trying to get his pet scan done.His sugar was to high last week and this week too.Now we wait till next Friday.Isn't this time vital? Shouldn't the hospital do something to help him get his diabetes under control for this test?
my father was recently diagnosed with lung cancer.I always expected when someone was diagnosed with something so severe.The doc would naturally give us some direction.Who to talk to!We are in this alone!I don't want to seem stupid or crazy,but now what?just sit back and watch him die!I'm searching the internet now for answers.
As I was searching for information online I happened upon this discussion. I so appreciate reading everyones comments and experiences, however difficult they may have been to write. My father (70 years old) was recently diagnosed with B Cell ALL (acute leukemia). Our family is really struggling to know how to deal with the prognosis and understand some mixed messages from the doctors and nurses. It is the worst roller coaster of emotions and information that I've ever experienced. Just yesterday a nurse gave my father completely conflicting information from what the doctor and referred to the next stage being palliative care - we had no idea that this was the next step. They ended a round of treatment after only 4 weeks just when things seemed to be going in the right direction. The nurse then called back quite apologetically after several other calls with the doctor's office. Navigating the information and recommendations vs. individual opinions is extremely difficult and if only they knew what this did to our family yesterday. For those of you that have expressed difficulty with the watching and waiting - it makes me realize our family is experiencing something that unfortunately many others do too. This is all great advice to live by each day.
Great advice to live by even for those who aren't ill.
Live everyday to the fullest.
Hello to everyone, especially those who have written since my entry on June 30th. Each of us has a right to good care from our oncologists, however, I do not know why some of them have gone into this speciality because so many lack the understanding and empathy and patience that cancer patients need. I think it is okay to check with your cancer friends if there is anything the person would like to talk about, and if they "don't know", how about "how are you doing dealing with all this?" Then it opens a door for them to discuss what might be on their mind. I find myself many times a day "turning my situation over to God", and if needed, saying a prayer to release it.
I do try to seek out friends to be able to talk with if I feel lonely, and that seems to help. I have easy listening music on often, and go to sleep listening to a quiet, calming CD. The "wait and watch" of my kind of cancer is very frustrating, but I know that in reality, I have no control over it. I try to make each day count. I have often sat down and written notes to friends if I feel lonely, because that helps me feel "connected" to someone in my life. I also appear "just fine" and like "nothing is wrong with me" and even looking younger than my years. I don't believe any of the "judgemental" people who make negative comments could ever know how any of us feel; you don't unless you get thrown into the cancer diagnosis; G
Hello Everyone. My Brother was diagnosed with a rare type of Colon Cancer two years ago. Later this month He will have a small tumor (metastecized)removed from his right lung. Two years ago, I found it very difficult to communicate with Him. I didn't want to bring up the Disease, to make him worry more, or have him 'revisit' his difficulties, all over again with me. And maybe, I didn't want to have to deal with the problem.
It is still difficult for me to talk to him. I am deployed overseas, and truthfully its hard for me to even get to a phone to talk to my sick Brother, or anyone for that matter. I'm glad I bought this laptop, prior to my trip overseas. Thank you for reading.
It has been a privilege to read all of your comments. Thank you so much for sharing your feelings and ideas. You have inspired me.
Carole, I hope you can find another oncologist. That doctor had no right to treat you that way. In my eyes, it amounts to verbal abuse. Only you can know how a drug or anything else is affecting your quality of life. My sister is currently suffering bone pain from a drug similar to tamoxifin. A friend quit it because she could not live with the pain. An empathetic physician would try to find you help of whatever sort you need to continue the drug and respect your decision to quit if there is no way around it. A good doctor would not deny you other tests and treatments because your wishes were contrary to his/hers. Hang in there
I read all of teh comments and feel as if you are wroting my story. I share problems with so many of you ....so why do we all say we feel alone? I know teh waiting for the recurrence is a huge part of it for me.And heaven forbid I bring up dying!!!! I also have survived much longer than expected and right now I look and feel pretty good.It is probably my imagination but I can alnost hear people thinking " She must not have been that sick! " I FEEL GUILY FOR STILL BEING ALIVE!!
i wish we coudl all get together one day a week and open up and share our feeling on death most groups talk only about the surving, the hope and how to live with Cancer.
I have stage 3 breast cancer. One year past removed breast and lymph nodes. Could not take Tamoxaphen for the five years recommended due to bad side effects. Cancer Dr refused to do a Pet Scan since and I quote" Since you won't take the medication you have low regard for you life and I see no need to order it". Some Cancer Drs are not kind and don't listen to what the patient says. I don't know if it has spread or not. Just live each day and enjoy it as best I can.
I thought I would post a couple of book resources for planning a memorial service, since Arianna had this question, and others may find this helpful. Take a look at Remembering Well by Sarah York, or Celebrating a Life: Planning Memorial Services and Other Creative Remembrances by Faith Moore, 2009.
I can relate to Laurie's comment about friends and family not wanting to talk about your death. I was told over a year ago that I was terminal. I then responded unexpectedly to some palliative radiation tx.. I have been told my cancer is likely to return. However, I have also had more than one Dr. tell me that God is keeping me here. I really do believe that I just might make it, and have felt that way all through this long process. I was pretty much at peace with my pending death last year since I have a strong faith even though I'm not a church goer. I planned my memorial service. Financial affairs are in order. I have told friends and family I love them and what they mean to me. I took some trips. So why am I having a more difficult time now when my prognosis is somewhat questionnable. The not knowing is part of it. The other day I realized it's ultimately because I don't want to hurt and cause more grief to my family and friends. I also feel my life is a bit in limbo. I'm not well enough to work yet I'm a bit restless. I do activities but limited. I am thankful for every day yet uncertainty of the future is always in the back of my mind. Living day to day helps the most. I just get off tract at times.
It's really helpful to read other people's thoughts on this subject and to know that I'm not alone in the way I feel. I have bilateral breast cancer and lymph node involvement and I know my prognosis is poor but family and friends refuse to discuss it. I feel I have to live in denial, never mentioning it for fear of upsetting them and they think I'm being negative when I try to discuss the things I want to put in place I think I'm being practicl and realistic but i'm in a very lonely place right now (I live alone)as no one seems to understand what I need.
It is wonderful to read all the comments; I experience a family who doesn't even ask how I am doing, but I do have lots of friends, thank God. I do have pre-planning done.
I have stage four small cell lymphocytic lymphoma (in bone marrow), diagnosed in June, 2009. I had Rituxin in September, 2010, and then fell experiencing a communited fracture of radial head of my dominant hand, requiring open reduction and placement of locking plate and screws. I blamed Rituxin for weakening bones.
Since then I changed oncologists again (have had five now.) Really don't trust any of the oncologists I've had, including a second opionion in a major city.
I am checked monthly, however, I question the validity of that now, as it feeds into my anxiety.
I have a pretty good relationship with God, and am "Ready" when He wants me but would like to die quickly. (I am concerned about the declining stage.)
My blood work always looks okay, and doctor can't feel lymph nodes, but they were only found with radiological exams anyway.
I am concerned that after getting the disease "under control" in Sept., 2010, that this "watch and wait" idea is just going to let it go "full blast" again.
Does anyone out there have SLL (which is actually like CLL (leukemia, rather than mine, which displays in lymph nodes.)????
Would love to hear from you and see how you cope with "watch and wait".
I turn it over to God the best I can, do volunteer work, and go to prayer
Back in 2004 my wife aged 34 developed stage 4 breast Cancer, but afraid to reveal to me that had a problem. Living in Indonesia many people say that they have a cure which we know is not true, after having the full treatment and 4 relapses developed liver cancer then lung cancer died in 2008. I knew two years before her death that only had a short time to live, I also suspect that my wife knew, but we never discussed it. She kept positive through a difficult and allways looked foreward to visiting the specialists for treatment. Aftwer a CTY scan in July 2008 and advised that no more treatment was available took the news calmly. It was then that the family were advised just how serious the situation was. She died 4 days after the CT scan at home. I was calm aS i was expecting it, just when did not know. How did I keep sane during the period of treatment from 2004 to 2008, I took up cycling and would daily go for my exercise about 15 KM. One cannot stay 24/7 with a cancer patient otherwise would go insane knowing that you cannot do anything to bring back full health.. I would recommend to any person who has to care for a cancer patient, find something that you enjoy doing and do it, if you become emotional then you are no use to anybody, and your own health will suffer, depression, weight loss and lack of sleep being just3 things that will happen.
I have stage 4 Prostate cancer, Had luprin shots for 2 years, and for the past 3 years have had a Vantis implant, once a year. i spend at least 3 hours a day exersizing, walking, bike riding and lifting. i am 73 and feel very good. You have to work at it.
I am a Chinese doctor, I was lucky to read this article and to be enlighten deeply. In China, breast cancer research is still very backward as very little government investment in this area. my blog is http://www.breast-cancer-patients.com. I would like to further exchange with you.
I have the same problem as most of my friends and family try to shut me down immediately when I bring up anything to do with my death.They most common comment is "don't be so negative I must have hope"
I do not consider being practical neg.I have already lived almost 16 months longer than my FORMER oncologist said I would!! BUT
,,, I know I am going to die..short of a miracle it will be within the year. But right now I fell great I spend as much time as I can with those close to me and PREPARE has become my middle name lol
I am doing the DVDs and have gifts bought. I have started to clear out my house of "stuff" sort pictures creating albums for my children. Sadly i do have to do it alone.
What a gift it would be to be doing this with my family. Smiles, laughter and tears would be shared not kept hidden away. Don't they know how exhausting it can be to have to ALWAYS be on?
This is the most phenomenal post. I want to thank every posting for printing their feelings. The idea of the cd disc is great. I plan on trying that to show others that I am not in denial, I have only accepted whatever outcome is due. Hopefully my family will accept the fact that I am at peace.
Would you kindly offer a referral of one or more books on planning a memorial service - not a funeral.
Thank you ever so much.
At times I think we (anyone afflicted with a terminal diagnosis) are chosen ...live mindfully. At times to curse the disease but then forgive ourselves for being human. Now is the time to listen to ones self, accept the wisdom of others and let the rest go. The moments of clarity and acceptance are so peaceful, indescribable actually...enjoy your day everyone. This blog has become a support tool for many of us. Thanks Mayo Clinic people!
It has been so helpful and inspirational for me to read all these comments at a time when I am feeling very negative about my prognosis. Although one knows all these things, it is wonderful to read about people putting them into practice and the peace it brings them. I will do the same now. Thank you all and bless you.
CA gives one real chance to reflect about the life. The false ego which has taken over and fills our mind with incessant past thoughts won't allow us to know what we really are. Unless we let go of our attachments and find the illusion created by ego thru inner reflection and mindfulness, we won't know our real Self which is all Bliss and Peace. One has to die to the past every moment. Then Death of this body will not be a Problem.
Thank You All for your input and also letter from TLC. I have Multiple Myeloma also. It is terminal I was told when I was diagnosed Feb.2010 and was on Chemo thru Aug.2010. Now I am in remission and hopefully for a long while my Oncologist hopes but I am always fearful when I go for my monthly checkup that it is back. I have tried to stay positive and enjoy my life as I am feeling pretty good. I am able to do gardening and shopping and my house work which I enjoy and travel. I have told my Hubby my final wishes but I can see sometimes He doesn't want to hear about it. I understand as it is very hard on him. All our children are married and We do everything together.I also would like to make the time and write down some letters to my Grandkids and other close family members to have after I am gone. I thank God everyday that I am still here and trying to enjoy my life each day. God Bless All of you.
Bless you, EJ, for so poignently expressing what others feel.
My husband was diagnosed with lung cancer October 2010. After successful chemo his cancer came back within months with brain mets. We have exhausted options and now have to decide wether to continue searching new options or call Hospice. His oncology in our local small town said to stop treatment. It's a very hard decision to make. Any words of wisdom out there?
Thank you Sheryl & Mayo Clinic for providing this space. I wish I had a face to face support group but none exist where I live. My diagnosis is Colon CA and I have no evidence of disease after 2.5 years. My younger brother who just turned 50 is battling multiple myeloma and just had a bone marrow transplant. Because I am a hospice nurse I asked him to complete something called "Five Wishes" which is a document that allows all people to talk about what they want, what is important, it asks very good questions and helped me ask the hard questions about CPR, hospice care, how should we help his little girl who is 10 etc. At first he really struggled to deal with these issues but after we talked and he wrote things out he was very at peace with what might happen. I was very thankful because I did not want to decide for him, I just want to be his voice if needed. I recommend this tool to all of you, you can get it google "Five Wishes".
As a hospice nurse I have always felt that patients know, accept, plan but it is very hard for family to be at the same place. Being a patient myself I can understand this because I know what I have experienced and that I think about dying when I go for checkups and think, well they might find something, it could come back. I have mentally planned my memorial service, I have planned to write my kids and grandkids letters for the future, my brother is trying to write a card to his daughter for all her birthdays, also a weddin
I was diagnosed with stage IIIc ovarian cancer last Nov (2010). Chemo did its job, but I know what my odds are for recurrence. I'll be 52 in a couple of weeks and don't feel like I've lived my life completely, but have accepted I might not live as long as I want to. My husband gets very quiet whenever I try to discuss a future where I'm not here. I don't want to die before I'm 60, 70, etc., but the likelihood is there. I worry how he will handle life in my absence. I want to leave my daughters with a parent who will not mourn but rather celebrate our life together and help them cope.
This is a question for "Tom" who posted a comment at 11:15 a.m. I had a similar diagnosis of stage 4 prostate cancer in January. It would be helpful for me to know if you are getting Lupron injections and, if so, how that is working. Those injections seem to be working for me. I'm getting conflicting information regarding how much time we may have before our prostate cancer becomes really severe. I'm not in a support group but probably should be. JON
Thank you for participating in this blog where everyone can learn from each other. Even if you don't have much time or stamina, you can get the help of a friend or family member to tell the story of your life with photos. I have done this for myself, my husband and every member of my family that I have known. Only you can do this for yourself as you would like the story told. Put the photos together in order from birth until death. These photos can be put on a DVD, or CD with music of your choice if desired. They can be shown on a home computer or at a church or funeral home service. Or they can just be given to family members and friends who would like to have this memory of you. I have made videos for many friends, of their parents who have passed. But my own is ready to be copied and/or shown when my time finally ends. This has helped pass the time and is so appreciated by others. It can be your final gift to those who love you.
Life is terminal. I've lived with some potentially deadly diseases for all of my 71 years. I'm surviving breast cancer right now. Thank God: my Doctor's have been good, my support system is good, & I focus on life because that's what we have as long as we have it. Tomorrow is a dream, yesterday is a memory, what we have is today. I want my todays to be the best todays I can possibly make them. God & living in today, gives me peace.
Thank you everyone and especially to you Sheryl for letting people speak.
I am 64 and have stage 4 breast cancer. I was diagnosed on May 2, 2009 and my husband 71 left me because of it and married a young woman 37 immediately after the divorce. I'm not only coping with the cancer but also the divorce. My living trust and will are completed and I feel very relieved because of it. I participate in charity work for breast cancer and the food bank. I feel very healthy and want to give to others while I can. This newsletter is very helpful to myself and my family. I appreciate the myths about cancer. Thank you so very much.
I have accepted my diagnosis. As grim as the prognosis is I feel like I am giving cancer a good fight! My family can't help but worry and it helps us all that they are near. I feel like my role is also in helping them accept the inevitable.
Nothing about dying is easy but the same could be said about life. Someday I will decide when I will be stopping chemo - it will be my decision, I have completed my living will and discussed funeral arrangements. At 45 years of age I feel like the best way I can support my family is by helping make those tough decisions.
I'm not ready to die, I'm just prepared.
I was diagnosed with Stage 4 Prostate Cancer last Fall (Oct 2010). I attend "Man-To-Man" an American Cancer Society Prostate Cancer support group meeting monthly.
The last meeting in June, I presented to all of the men (and some wofes attending) the things I had learned in my Estate Planning. The seminar went very well. What I said to start the discussion was: "Everybody Dies - Everybody! and as some wise man said - "No One Gets Out of Life Alive".
At the end of the seminar I left the room that we use and there was a wife standing in the hall. I said something like "What did you think about my presentation". She said "Don't Talk To Me!!" and she rushed down the hall. My wife tried to comfort her but she just kept going.
A day or two one of the other members called her husband to apologize for me. I was concerned that I had upset her. Her husband said that she was in max denial, not only about her husband's Prostate Cancer but her own mortality. Her husband said that she would not even discuss a Living Will which was one of the topics in my seminar.
It was the first time for me to confront directly the disbelief and denial in some people when faced with the fact that a loved one is going to die. Of course since an estimated 60% of the American population does not even have a Will, it would seem that a LOT of Americans are NOT planning to die.
I find that very sad.
When I was diagnosed in Sept. 2009 with Inflammatory Breast Cancer and Invasive Ductal Carcinoma, one insensitive breast surgeon referred me to Hospice without even recommending I see an oncologist. Fortunately, I did, had 4 chemo treatments (no surgery or raditation) and was prescribed Arimidex and I'm still here! In the meantime, I've had time to finalize my trust, will, POA, etc. as well as make my creamation/memorial service plans. Cancer gives one time to plan, whereas a heart attack doesn't. I am fortunate to have these months. I've changed my dietary habits, incorporated more alkaline foods and less acidic ones, avoided sugar, soy products, pork and beef. Inflammatory breast cancer is supposed to be very fast acting, and I realize my situation isn't typical. I'm 70, I don't obcess about dying, but focus on living by visiting friends, taking trips, keeping folks up to date on my blood tests/doc visits, and not fearing the end. I DO wonder how it will be...will I be in severe pain, will I have tumors growing out of my body, etc., but I have confidence that the docs will make me as comfortable as possible...no heroic treatments, just comfort care. My husband and family will do all they can, so what more can a woman ask?
I was diagnosed with carcinoma two years ago.I was 45 at the time. I'm cancer free now. The article has made me reflect "on the act of dying".Preparing ourselves for death can't be easy or even natural (yet if we look at ancient civilizations they did exactly that).Considering that we are used to make plans for the future is planning or preparing for our death a contradiction? I believe it isn't.But I would want to concentrate on that very moment "of preparation" rather then think back of life has been.
I have accepted my diagnosis and will deal with it but it is difficult when my husband and family refuse to accept or even talk about any part of it.
Perhaps a hospice worker can help
I went through the same thing your daughter appears to be going through when my mother was dying of cancer. My "rock" who always was there for me in my life was going away; I grieved while she was still alive. I never saw her shed a tear or express anything about death. It is so difficult to accept the fact that your loving parent will no longer be.
I seem to be okay w/my Stage 4 diagnosis. I am 74 and have lived a full life. The difficulty is getting others to accept this reality. My daughter is in total denial and thinks I will outlive her. This brings unwelcome stress.
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