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Emotional Aspects Dealing with the Diagnosis: Disaster Counselling Support for Care Givers Post Traumatic Stress Syndrome How to Tell the Children End-of-Life Issues ******************************************* Dealing with the Diagnosis: Disaster Counselling Hi Paula, Your post brings back memories--memories of that initial shock, disbelief, being knocked to the floor... As for whether or not to give up...the answer depends on one person to the next...a few people manage an amazing mind set---finding peace with their own mortality and impending death, and yet at the same time, fighting like hell to stay alive. I myself have never been able to find this state of mind, but I understand the benefit of it--it covers all the bases, so to speak. I was so terrified right after my diagnosis, that I had the dry heaves every morning. I tried telling myself that dying was okay. If you can believe this is true, then you can stop wasting energy in raw fear, and channel that energy towards treatments. Marina %%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%% Disaster Mental Health: Dealing with the Aftereffects of Terrorism at: http://www.ncptsd.org/disaster.html Site from the National Center for Post Traumatic Stress Syndrome, discusses reactions to traumatic incidents, and much more. Good site. CancerNet URLs for Coping with Cancer http://cancernet.nci.nih.gov/coping.html http://cancernet.nci.nih.gov/coping.html#toc4 Disaster Counseling Resources at: http://www.redcross.org/ The American Red Cross provides these disaster counseling resources to help you and your family cope with the tragedies of September 11. However, the diagnosis of cancer in the family is as disastrous to the family as the September 11 tragedies were to the nation. Resources include: http://www.redcross.org/services/disaster/keepsafe/childtrauma.html Helping Young Children Cope with Trauma, http://www.redcross.org/services/disaster/keepsafe/transportation.html Guide For Families Affected By Transportation Disasters, http://www.redcross.org/services/disaster/keepsafe/terror.html Why Do I Feel Like This? http://www.redcross.org/services/disaster/keepsafe/badthings.html When Bad Things Happen. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Anger I completely understand the bitterness, rage, and fury brought about by terminal LMS. I can walk into my kitchen right now, and see some relatively new cabinet doors with cracks in them. One evening in January 2000, I stood in my kitchen and slammed those doors shut, good and hard, many many times. My husband just stood nearby and watched...they were his new cabinet doors...that he had acquired for our house. I was so absolutely frustrated...and I can remember rivers of hot emotion pouring out of my body as I slammed those cabinet doors. I had been pounded with chemotherapy, slashed by surgeons, and yet nothing had stopped my cancer. I wanted to be in that elusive club of the healthy, which was something that was so effortless to my husband and others. And all he could say to me was that life is unfair. I was bitter towards my doctors... I resented them... they were the messengers of grim news... and did nothing for me. And to the LMS list, I vented my despair, fury, and rage. And you guys politely listened. Thank you. And now a widower has vented his despair and depression to us. He doesn't really care that GIST patients, who once had the worst prognosis, now have Gleevec. He doesn't really care that we must view LMS as chronic condition. He needs some kind words, and some encouragement. Is there a way he can redirect the energy of his grief into something positive...perhaps some volunteer work for cancer related causes...visit hospice patients or something? Send your ideas, send him a cyberhug. This is what the LMS list is all about. Marina Dear Marina, You are absolutely correct. Everyone on this list, whether patient or loving family member, has gone through a terrible anger stage. We have all vented and we still have days that aren't so good. BUT... This widower is special. He has been harboring anger for 2 years and I am quite worried about him. We are ALL pulling for him to get through this. Some will do it through words of sympathy and some will do it by helping him move on out of this anger stage...even if it is words that don't appear as sympathetic... I for one had a hard time dealing with my anger and did the smart thing by seeking professional help. It was the best thing I ever did. I am much more relaxed and not as "depressed" or angry. I had even reached the point of having vicious panic attacks and am now on Paxil. This was something I had to seek on my own... and as caring as people are on the list... it was a job they weren't inclined to deal with. But the support from the list is one you will find nowhere else... that I do know... Many hugs and prayers J %%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%% This was a note from Dr. Demetri to the ACOR LMS List in September 2000. "Periods of depression are normal, expected, and common among people fighting any sort of cancer, and sarcoma is no different. First is to give yourself some room to accept that this is a normal reaction to a very difficult situation. Sometimes, just by giving oneself a break that way allows the feelings to pass and to move into a "next level" of spirit that transcends depression. Second, if the feelings are not moving on, there is great value in finding a skilled counsellor who can assist with both consideration of counselling as well as pharmacology - in other words, using words and using newer antidepressant drug therapies. These can change people's lives, and depression is a truly under-recognized and under-reported complication of all sorts of cancers. Finally, some element of hopefulness can still be useful, to recognize that important new research strides are occurring in labs and medical centers around the world, and to realize that staying "in the game" is a reasonable goal. There has never, ever, ever been a more promising time in human history in the fight against sarcomas than right now. We have a plethora of biologic information to translate into new therapies. Work is proceeding on many fronts at truly remarkable speed. We can all only hope, but hope is a reasonable thing to do in this environment of technology, speed of information transfer, and compassionate care. I hope this helps in some way. There is only so much I can truly do from a distance, but I hope these words give you some solace. Hang in there! We are all thinking of you. George Demetri, MD %%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%% Marina's Rules for Dealing with the Ill Patient Hi Webmeister, I was once in Carmine's position. Here are some things that I remember for myself. At least for myself, much of this was applicable whether in hospice or under treatment. Unless I asked for someone's opinion, I greatly resented people who felt it was their duty to interpret my prognosis for me. Allow Carmine to Pollyanna his situation, as along as he receives forthright information about his condition. Let him enjoy a little bit of delusion. In his heart, he will know the real score provided he has received the facts. Sometimes, we turn our frustrations against the messenger who brings us bad news. You don't need to be the messenger. Second, keep the scale of his world small. This refers to time as well as physical space. Do not plan things like going pumpkin picking. He can't go to a pumpkin field, and the reminder will only make him feel greater hurt. Minimize birthdays and holidays. These activities are for well people--activities that mark the passing of a year. Very ill people don't necessarily have a year, and they don't need holidays to encourage them ruminate about the past or grieve about the future they don't have. Make his bedroom or hospital room his universe...keep activities or discussions completely oriented to the present and his physical ability. Third, give him permission to die. Yes, this is very important. It will give him peace of mind. Reassure him that the family loves him, that the family will find happiness in the future even if he can't be there (extremely important), and that the family releases him to follow his destiny with death. Sounds grim, but done properly, it eases some worries of the very ill individual. Fourth, make use of narcotics, tranquilizers, etc. If he wants to be stoned, asleep, and unaware, then let him have that luxury of escape. Fifth, the children. My children made me feel much worse. I was better off not seeing them. Sounds like bad parenting, but now that I am better, it is evident hat my children were not emotionally damaged from the separation. Sixth, well-intentioned people can say the most thoughtless things. A couple of doctors referred to 'my short life.' I didn't need that comment. I heard dozens of times, even from my hospice nurse, "I can't imagine how you must feel." There is no more effective way to make a cancer patient feel isolated than to say, "I can't imagine how you must feel." Seventh, religion may help, even if you don't feel religious. I'm not particularly religious, but during my worst months some well meaning Baptist folks adopted me as their mission. The brought me their interpretation of the universe. And although I didn't believe it, I still found their message held a level of comfort. They spoke about finding tranquility and salvation by simply having faith in God at that moment--from my hospice bed. The rest of my life did not matter in the eyes of God. The idea was peace of mind for my weary soul. Lastly, thalidomide slowed my tumor growth. It is also a pleasant sedative. I'm not necessarily recommending it, but I felt that I should pass my experience along. Marina %%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%% Support for Care Givers Caretaking has its own pressures. Caretakers need emotional support as well as time off. Consultation with a psychologist or cancer counsellor or other skilled and knowledgeable person can help caretakers find the ways to help their loved one, and cope with that burden more easily, as well as deal with their own feelings about the situation. There are often chat groups or therapy groups that are limited to caretakers only. ~~~~~~~~~~~~~~~ Disaster Mental Health: Dealing with the Aftereffects of Terrorism at: http://www.ncptsd.org/disaster.html Site from the National Center for Post Traumatic Stress Syndrome also provides information about caretaker stress and several ways it can present itself. *********************************************** Post Traumatic Stress Disorder Disaster Mental Health at: http://www.ncptsd.org/disaster.html This is the site of the National Center for Post Traumatic Stress Disorder. People with serious illnesses often develop PTSD. Because of the effect of PTSD on the quality of life, it should be treated. It is recommended that Primary Care Providers ask the following 4 questions of their patients whom they wish to screen for Post Traumatic Stress Disorder. Primary Care PTSD Screen In your life, have you ever had any experience that was so frightening, horrible, or upsetting that, in the past month, you... 1. Have had nightmares about it or thought about it when you did not want to? YES NO 2. Tried hard not to think about it or went out of your way to avoid situations that reminded you of it? YES NO 3. Were constantly on guard, watchful, or easily startled? YES NO 4. Felt numb or detached from others, activities, or your surroundings? YES NO ________________________________________________________________ Current research suggests that the results of the PC-PTSD should be considered "positive" if a patient answers "yes" to any two items or the single hyper-arousal item. Treatment for Post Traumatic Stress Syndrome is psychotherapy or skilled counselling, with medication as necessary for comfort, until the condition remits. ************************** How to tell the Children How to tell children about personal disasters is not very different than telling them about public ones. The person telling them about the situation must have their own feelings under control, and be calm and reasonable and comforting. Listen carefully to any questions or worries. Honesty is the best policy. "I don't know, but I will be here, and we will manage together" is also an acceptable answer. The September 11 disaster in New York resulted in many psychological counselling sites being publicized. Here are some of them. ~~~~~~~~~~~~~~~ Resources for Kids with a parent with Cancer http://www.kidskonnected.org/ Disaster Counseling Resources at: http://www.redcross.org/ The American Red Cross provides these disaster counseling resources to help you and your family cope with the tragedies of September 11. However, the diagnosis of cancer in the family is as disastrous to the family as the September 11 tragedies were to the nation. Resources include: http://www.redcross.org/services/disaster/keepsafe/childtrauma.html Helping Young Children Cope with Trauma, http://www.redcross.org/services/disaster/keepsafe/transportation.html Guide For Families Affected By Transportation Disasters, http://www.redcross.org/services/disaster/keepsafe/terror.html Why Do I Feel Like This? http://www.redcross.org/services/disaster/keepsafe/badthings.html When Bad Things Happen. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~` http://www.misterrogers.org/families/ Just sent this on to my cousin whose 12-year-old son saw people jumping from the Twin Towers and body parts in the street and my cousin is worried about the lasting effects of this... ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Disaster Mental Health: Dealing with the Aftereffects of Terrorism at: http://www.ncptsd.org/disaster.html Site from the National Center for Post Traumatic Stress Syndrome provides information ~~~~~~~~~~~~~~~~~~~~~~~~~~~ How to Talk to Children About War at: http://abcnews.go.com/sections/living/DailyNews/WTC_childrenwar011001.html When explaining the details of war to a child, experts say, parents should be careful to not a make the child anxious or worried. Be Calm, Listen, Tell the Truth, Say Experts. This feature by ABC News offers further information. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Coping with a National Tragedy at: http://www.nasponline.org/NEAT/crisis_0911.html In response to the shocking terrorist attacks on sites in the United States on September 11, the National Association of School Psychologists has placed information that can help all adults who love and care about children on their website. This information provides ways to help children begin the healing process resulting from this senseless act of violence. ~~~~~~~~~~~~~~~~ >From Dr. Koop Site: http://www.drkoop.com/ Explaining the Horror to Your Children Experts Say Limit Details of the Disaster, but Be Honest ~~~~~~~~~~~~~~~~~~~~ compiled doctordee December 2001 **************************** End of Life Issues End of Life Issues http://cancernet.nci.nih.gov/coping.html#toc5 Death and Dying http://www.death-dying.com/ Resources for Kids with a parent with Cancer http://www.kidskonnected.org/ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Marina's Rules for Dealing with the Terminally Ill Patient Hi Webmeister, I was once in Carmine's position. Here are some things that I remember for myself. At least for myself, much of this was applicable whether in hospice or under treatment. Unless I asked for someone's opinion, I greatly resented people who felt it was their duty to interpret my prognosis for me. Allow Carmine to Pollyanna his situation, as along as he receives forthright information about his condition. Let him enjoy a little bit of delusion. In his heart, he will know the real score provided he has received the facts. Sometimes, we turn our frustrations against the messenger who brings us bad news. You don't need to be the messenger. Second, keep the scale of his world small. This refers to time as well as physical space. Do not plan things like going pumpkin picking. He can't go to a pumpkin field, and the reminder will only make him feel greater hurt. Minimize birthdays and holidays. These activities are for well people--activities that mark the passing of a year. Very ill people don't necessarily have a year, and they don't need holidays to encourage them ruminate about the past or grieve about the future they don't have. Make his bedroom or hospital room his universe...keep activities or discussions completely oriented to the present and his physical ability. Third, give him permission to die. Yes, this is very important. It will give him peace of mind. Reassure him that the family loves him, that the family will find happiness in the future even if he can't be there (extremely important), and that the family releases him to follow his destiny with death. Sounds grim, but done properly, it eases some worries of the very ill individual. Fourth, make use of narcotics, tranquilizers, etc. If he wants to be stoned, asleep, and unaware, then let him have that luxury of escape. Fifth, the children. My children made me feel much worse. I was better off not seeing them. Sounds like bad parenting, but now that I am better, it is evident hat my children were not emotionally damaged from the separation. Sixth, well-intentioned people can say the most thoughtless things. A couple of doctors referred to 'my short life.' I didn't need that comment. I heard dozens of times, even from my hospice nurse, "I can't imagine how you must feel." There is no more effective way to make a cancer patient feel isolated than to say, "I can't imagine how you must feel." Seventh, religion may help, even if you don't feel religious. I'm not particularly religious, but during my worst months some well meaning Baptist folks adopted me as their mission. The brought me their interpretation of the universe. And although I didn't believe it, I still found their message held a level of comfort. They spoke about finding tranquility and salvation by simply having faith in God at that moment--from my hospice bed. The rest of my life did not matter in the eyes of God. The idea was peace of mind for my weary soul. Lastly, thalidomide slowed my tumor growth. It is also a pleasant sedative. I'm not necessarily recommending it, but I felt that I should pass my experience along. Marina %%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%% Compiled by doctordee December 2001 The information on this site might very well be inaccurate, should be relied upon only for general information, is never intended to be medical advice, and is not a substitute for consulting your own physician. Any listing of services or people is not complete, and is NOT a recommendation or guarantee.

The information on this site is not a substitute for professional medical advice. You should not use this information to diagnose or treat a health problem or disease without consulting with your doctor. Please consult your doctor with any questions or concerns you may have regarding your condition. Copyright © 2001-2007 LMSWEBSITE