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• May 6, 2013 4:00 p.m.

  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.

  - Katie

• November 4, 2012 4:03 a.m.

  How doI cope with my wifes death just recently

  - Harvey gorlick

• July 29, 2012 5:59 a.m.

  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.

  - L. Herandez

• July 28, 2012 4:08 a.m.

  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.

  - Rea

• February 14, 2012 10:46 a.m.

  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.

  - Sheryl

• February 13, 2012 12:18 p.m.

  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.

  - No name given

• January 28, 2012 11:03 a.m.

  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. Laurie

  - Laura

• December 29, 2011 10:05 a.m.

  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.

  - Greg

• November 12, 2011 7:00 p.m.

  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.

  - Laurie

• November 7, 2011 9:28 a.m.

  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

  - AG

• November 2, 2011 5:15 p.m.

  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.

  - Heather

• October 29, 2011 7:36 a.m.

  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

  - Grace

• October 1, 2011 5:33 a.m.

  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

  - Dana

• September 19, 2011 9:00 p.m.

  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.

  - Lori

• August 29, 2011 9:52 a.m.

  Elizabeth, you are a precious soul! Your words are beautiful. Blessings to you. :)

  - Danny

• August 11, 2011 1:08 p.m.

  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.

  - ELIZABETH

• August 7, 2011 12:39 p.m.

  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!

  - Gail

• July 31, 2011 2:20 a.m.

  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?

  - dottie

• July 31, 2011 2:11 a.m.

  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.

  - dottie

• July 28, 2011 10:15 a.m.

  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.

  - Julie

• July 13, 2011 5:42 p.m.

  Hello. Great advice to live by even for those who aren't ill. Live everyday to the fullest. Godspeed

  - Optima2012

• July 11, 2011 1:55 p.m.

  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

  - Judy

• July 10, 2011 9:07 a.m.

  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. -David

  - David

• July 8, 2011 5:58 a.m.

  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

  - Kathleen

• July 7, 2011 8:06 p.m.

  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.

  - Erin