CancerCompass message board discussion started by robinlbr on 1/8/2008 http://www.cancercompass.com/message-board/message/all,19523,0.htm Sat, 06 Sep 2008 00:00:00 GMT Sat, 06 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My name is Robin. Although I am technically new to the board, I have been lurking for a couple of months.  Just not knowing what to say. My husband Donnie was diagnosed October 9th 2007 with Stage 4 esophageal cancer.  It is in the base of his esophagus and in some lymph nodes. We were told chemo is his only option.  You know, get your affairs in order all that good stuff. They make it sound so easy.  He has been taking chemo a while now and the last scan was good, the tumor is shrinking.  He is 43 years old and is in good health other wise.  The reason I am writing is for emotional support from other caregivers.  Do you feel alone as I do?  You know I am blessed with some great friends. Some I think don't come around as much cause they don't know what to say, but I have some that are here every time I need them. Is it crazy to say I have never felt more alone in my life?  Yes my friends are here and are great support but when they go home, their family is still in tact.  Their life is still"normal".  I feel even though this affects them, they just don't get it.  I tend to write to deal with my emotions so I am going to post the last thing that I wrote.  One of my friends told me that other people going thru what we are would relate. I hope you all know how I have followed you and even though I haven't said it out loud on the board, I pray for all of you. God BlessHere is what I wrote."Somebody Stop the World"Somebody stop the world,I want to go back. I want to go back ,Before cancerTurned our world upside down. I want to go back this wasn’t supposed to happen to us, not to you . I want to go back ,To our carefree daysAnd future plans. I want to go back before doctors and chemo and losing your hair I want to go back,When you were so strong ,You seemed invincible  I want to go back, When I didn’t cry every dayfor fear of losing you. I want to go back ,To where people didn’t avoid meBecause they don’t know what to say. I want to go back ,To when we still had forever And weren’t living on borrowed time. I want to go back ,To a point in my lifeI wasn’t so angry with God. It wasn’t that long ago,Though it seems like forever Somebody stop the world,I want to go back…………………   robinlbr Tue, 08 Jan 2008 00:00:00 GMT Robin,You have a gift of expression.  Seems that you are able to express things that I wish I could.  Yes I do feel that I am all alone even though I have friends and family that I know care deeply and would do anything but they really do not understand.  I have had the same experience of people avoiding me because they did not know what to say but I can't hold that against them because I have done the same in the past.   This terrible disease has taught me much and one thing is to never avoid someone in a bad situation.   Thank you Robin for your words, please keep writing.Ginny ginnyx7 Wed, 09 Jan 2008 00:00:00 GMT Ginny, thank you so much for your kind words. It is difficult for people to truly understand how you are feeeling and what you are going thru when they haven't experienced it themselves.  writing helps me express the rollercoaster of emotions that I go thru daily.  I always feel like I have to be the strong one for EVERYONE.  of course for my husband, the kids but even for my friends and family because they are all affected by this.  I tend to keep stuff in so much, I am afraid I am going to eventually just explode.  Writing helps with that. It helps me to get my fears and feelings out and that is the best thing that I have been able to do since I don't feel like I can just let it all out to anyone around me.Sometimes just writing down what you are feeling and then just tearing it up and throwing it away helps.  It just doesn't get rid of that feeling. you know the one I am talking about.  Being in a room full of people and more lonely than you have ever been in your life. Robin  robinlbr Wed, 09 Jan 2008 00:00:00 GMT Wow, you have said exactly how I have been feeling since my husband was diagnosed in August with stage 4 esophagul cancer also. He had a stent put in and it slipped twice and finally had to be removed from his stomach. He has been doing chemo, cisplatin and irrinotican and it helped to shrink the tumorso he can eat. The first round of it caused severe diarrea. They tried him on a taxel combo but the 2nd time he got it,he had a bad reaction when it first started and they had to call the nurses to give him an injectiion to counteract it. He started back to the first chemo again along with some shot to help with the diarrea and it has helped. He also has it in his lymph nodes and in his liver it has metastisized. We have three kids, 24 20 and 15 and I know what you are feeling.It is so hard to be brave all of the time. Most people cannot understand how to keep your life normal while playing the waiting game. I have to keep working as bills still have to get paid and the kids still have to go to school and work too. Our lives have to keep going on even if the cancer is going to take him from us. He is frustrated by losing  control over his own life and not being able to help us in our future.most support groups are for surviving cancer and how to get on with your life after cancer. How about some help for us who are are losing the battle-cancer patients and their families? Other than hospice for the end, there is not anything out there that I have found.It is great to hear from someone who is just as upset and confused as I am.We are just trying to live each day as normal as possible and deal with the problems one day at a time. My aunt tells me not to worry about tomorrow as we have not made it through today! Have faith that God will not give us more than we can handle. good luck with your husband and I will say a prayer for strength for both of you as you both need it. Laura  LAURAANDMIKE Thu, 10 Jan 2008 00:00:00 GMT Laura, Wow. I can relate to you so much. It is so hard.  Waiting for cancer to take them? Waiting for them to be cured? Waiting for that miracle?  I pray every day that he will be cured.  But if it does do away, we will never be the same, we will always be waiting on that other shoe to drop. It is a horrible horrible disease and I am sometimes so angry with God but I still hold on to my faith.  I would like to share with you what I wrote today.  Please understand my writings are only a way to help me deal with what I am feeling.  Lately I have been feeling so isolated from my friends and extended family and so alone in all of this being the strong one for everyone else.  My husband hasn't read any of my writings, I don't want him to worry about me. We deal with every day the best way we know how and as normal as possible . But you know, my husband is so worried about our future and providing for us. I wish he would focus more on himself.  Well anyway, here is what I wrote todayWhat they don’t see……. They sayYou are so strong They see medoing what I have to for my family They see meput on a brave face They don’t seeHow many tears I cry They don’t seeMe fall apart daily They don’t seeThe terror in my heart They don’t seeHow much my life has changed They don’t seeHow this has changed me They don’t seeThe loneliness that I feel They don’t seeHow their avoidance hurts me They don’t seeFear in their children’s eyes They don’t seeBecause their life is still intact They don’t seeBecause they still don’t appreciate what they have They don’t seeHow scared I am They don’t seeBecause they don’t look They don’t seeBecause they don’t want to see They don’t seeBecause they don’t ask They don’t seeHow much it hurts meThat they don’t see      robinlbr Thu, 10 Jan 2008 00:00:00 GMT Hello Robin,I wanted to say many thanks for your inspirational peoms.  I know these are from your heart.  My husband is going for his procedure tonight to find out if the disease is spreading.  I have only lived with the primary news for a month and found your poems today.  I do wish things could go back to before the news of my husbands colon cancer. I spent my time doing my son's home school and did not have time for friends.  You are lucky to have made a few and bless you for sharing.  Not many people in this world do share to the extent you have with your gift.I was going to put on a brave face and not have any fear since we leave for the hospital in one hour.  I feel my heart and have tears again because of you.  I feel better with my real emotions. Thank you and I also want to send my prayers to you today.  pears Mon, 21 Jan 2008 00:00:00 GMT RobinYou are very sweet.  I will start a journal in my cancer folder which is full of news and events.  You are completely right about holding emotions.  I do not want to get sick myself.  I have one request for you, My husband worries about the future also, but I give him pretty cards.  Even though the vote of the house is that it is a little silly  to make cards.  It brings a smile to his face.So the suggestion from me is to show your husband one of your poems.  He will love it.  I feel like I made a cyber friend today.  Bless you for your prayer. pears Mon, 21 Jan 2008 00:00:00 GMT Thank you all for this wonderful comforting thread.It certainly is an emotional rollercoaster. The heart stopping, paralysing catastrophic yet noncomprehensible, insensible words "you have Cancer".The world stops dead in your tracks. Questions, tears, disbelief, and an overwhelming sense of who will look after my family, have I left an impressinable legacy?The phone rings frequently, each time zinging adrenalin, breath holding aprehension dreading the next result. Or trying to explain to others.Well wishers visit, flowers, cards. Comforting those who are upset. Using humor, setting projects for others to do to focus energy positively.Preparing, silently your affairs. Checking collections of children's years of saved school work, letters, cards. Writing memoirs. Praying. Appearing strong. One day at a time, one task a day.Entering a fearful world of treatments with all the side effects. Trying to get my head around "I have to get really sick, over a length of time, in order to get better, when I feel really well."I too have given each of my family lots of little cards, but timing is crucial. each one handles the situation so differently. It's hard. Yet it makes you appreciate each day. Thankful for another day together. Not wasting a day. One of the hardest things is holding back from all the household things as my daughters and husband learn how to run the show. Emotions run high, volatility bubbling, erupting. Quiet gut wrenching tears, comforting, sharing thoughts and good times.Feeling so sad inside that there won't be more.Thanks for sharing and understanding. IT makes the journey more supportive, giving strength to do the best I can to be a 'healthy survivor', or stay as well as possible during my journey.Kiwi"Fear is a Reaction, Courage is a decision" Kiwi H Fri, 25 Jan 2008 00:00:00 GMT Hello Kiwi HBless you for your encouraging words also.  I enjoyed the statement Fear is a Reaction.  Courage is a decision.  You have a good out look. I view you as a healthy survivor. Yet, I can almost sense your pain in your writting.  I can relate to the area of feeling sad about not having more, this hits home with me.  I decided to take a walk after a very severe storm which at the time was only drizzling rain.  It was a wonderful walk seeing tiny birds nestling back into the trees and how green the pine trees had become.  The new white snow glistened on the ground.  I had only a mile to walk but each step felt wonderful. Pear pears Fri, 25 Jan 2008 00:00:00 GMT hi RobinIm new to the board too! and came here looking for emotional support from people such as me who are going thru what everyone else is going thru, seeing a loved one battling with this disease.My husband is 40 .our kids are small and He is my whole life. I continue to trust in the Lord and know he will take me through that ever comes. I just have to trust and have faith and hope the treatment he takes works.I hope we too can go back to our normal lives. I too smile and carry on, and give support to the whole family. But how long will I go on showing I can do this? Will there be a breaking point for me.I came here looking for support so I can stand strong for my husband and kids.I too feel lonely, I cannot talk to friends anymore. I have nothing to say. no one will understand what we are going through. Our normal world turned upside down. All our plans hopes are in the water.. seems its slowly drifting away..I have to work and support the family. My husband continues to go to work but I dont know for how long he will be able to. I will keep all of you in my prayers, and at the same time draw strength from all of you.   Darryl Sat, 26 Jan 2008 00:00:00 GMT It is a painful journey.Due to the nature of my disease and stage of diagnosis, I have heard 'palliative and pain management from the beginning.While remaining positive, focusing my energy on doing teh best I can, facing each treatment challenges this.Today I learnt that my surgery may be extensive. My tumour is bulky and this will mean that 'other organs will be sacrificed'. For some reason loosing almost  all of my 'female anatomy down below' is extremely tough to face. I was prepared for the stoma and how this would alter things until I learnt how to handle it all. But hearing that I may also loose much more is tough. 2 years ago I had a large lumpectomy on my breast which shocked me with how ill prepared I was for the emotional outcome of this."Courage is the art of being the only one who knows you're scared to death" Kiwi H Sat, 26 Jan 2008 00:00:00 GMT Robin, Kiwi, Pears Laura, Ginny:It is not easy facing your own mortality or those of your loved ones.  I was an oncology nurse for Gynecology and yes the removal of all your organs it a traumatic experience.I also am a survivor of end stage Multiple Myeloma ,another 'incurable cancer'..I share you pain and your sorrow. I understand your fear and your courage. to those that have young children and have to fight through the monetary probems is bad enough.The dreaded words "you have cancer" never applied to me HA!!! Anyway today I will say a prayer for you all..So much suffering and so much agony but there is hope and while we live it lives.  I was one of the fortunate ones to have been in remission, which is unheard of for my condition.  I chose to be positive (I was somewhat confused at the time)  I also chose natural healing as there was no other option for me.  I would like to add some tips here for the patients and caregivers to help you all.Diet is extremely important.  IT seems hard but no sugar.  (Giving cancer patients sugar is like giving them gasoline for a fire) I know main stream medicine does not agree with this but it is true.  Also stay away from dairy as much as possible.  Eggs are good light protein. Heavy Whipping cream can be watered down to use as milk. More easily digested. Eat foods that are nourishing and light. For t hose with the swallowing problems use soups, and puree's.  Add the heavy whipping cream.  If the throat can stand it add tumeric. It is an anti cancer agent. Another thing to add is 500 mgs CoQ10 caps daily, Artemisinin , and epicor.  all of these are over the counter natural supplements that do not interact negatively with chemo. This helps build the immune system.  Bio feedback or meditation 30 mintues a day seeing your cancer cells being killed off and replaced with healthy ones. Lots of vegetables but light on the fruit. Juice carrot, celery, 1 apple and spinach twice daily. Nutrient heavy and easy to swallow.  Swansons vitamins carry most of these items an they are inexpensive. I found a yahoo group who uses Artemisinin to cure their dogs cancer.  Google it. I was fortunate to have friends bring me the nurtrition I needed and a husband who could juice daily. If any of you would like information post or send me a private reply.May God bless you and your families.  MMS On 1/26/2008 Kiwi H wrote:It is a painful journey.Due to the nature of my disease and stage of diagnosis, I have heard 'palliative and pain management from the beginning.While remaining positive, focusing my energy on doing teh best I can, facing each treatment challenges this.Today I learnt that my surgery may be extensive. My tumour is bulky and this will mean that 'other organs will be sacrificed'. For some reason loosing almost  all of my 'female anatomy down below' is extremely tough to face. I was prepared for the stoma and how this would alter things until I learnt how to handle it all. But hearing that I may also loose much more is tough. 2 years ago I had a large lumpectomy on my breast which shocked me with how ill prepared I was for the emotional outcome of this."Courage is the art of being the only one who knows you're scared to death"  mmsurvivor Sat, 26 Jan 2008 00:00:00 GMT  On 1/25/2008 Kiwi H wrote:Thank you all for this wonderful comforting thread.It certainly is an emotional rollercoaster. The heart stopping, paralysing catastrophic yet noncomprehensible, insensible words "you have Cancer".The world stops dead in your tracks. Questions, tears, disbelief, and an overwhelming sense of who will look after my family, have I left an impressinable legacy?The phone rings frequently, each time zinging adrenalin, breath holding aprehension dreading the next result. Or trying to explain to others.Well wishers visit, flowers, cards. Comforting those who are upset. Using humor, setting projects for others to do to focus energy positively.Preparing, silently your affairs. Checking collections of children's years of saved school work, letters, cards. Writing memoirs. Praying. Appearing strong. One day at a time, one task a day.Entering a fearful world of treatments with all the side effects. Trying to get my head around "I have to get really sick, over a length of time, in order to get better, when I feel really well."I too have given each of my family lots of little cards, but timing is crucial. each one handles the situation so differently. It's hard. Yet it makes you appreciate each day. Thankful for another day together. Not wasting a day. One of the hardest things is holding back from all the household things as my daughters and husband learn how to run the show. Emotions run high, volatility bubbling, erupting. Quiet gut wrenching tears, comforting, sharing thoughts and good times.Feeling so sad inside that there won't be more.Thanks for sharing and understanding. IT makes the journey more supportive, giving strength to do the best I can to be a 'healthy survivor', or stay as well as possible during my journey.Kiwi"Fear is a Reaction, Courage is a decision" Your post touched me soo much.  I cannot even fathom how hard this must be for you. I know how hard it is being a spouse .  Stay strong and let your family take care of you so you can beat this dreaded beast of a disease and get well again. God Bless you , I will keep you in my prayers. Robin  robinlbr Tue, 29 Jan 2008 00:00:00 GMT  On 1/26/2008 Darryl wrote:hi RobinIm new to the board too! and came here looking for emotional support from people such as me who are going thru what everyone else is going thru, seeing a loved one battling with this disease.My husband is 40 .our kids are small and He is my whole life. I continue to trust in the Lord and know he will take me through that ever comes. I just have to trust and have faith and hope the treatment he takes works.I hope we too can go back to our normal lives. I too smile and carry on, and give support to the whole family. But how long will I go on showing I can do this? Will there be a breaking point for me.I came here looking for support so I can stand strong for my husband and kids.I too feel lonely, I cannot talk to friends anymore. I have nothing to say. no one will understand what we are going through. Our normal world turned upside down. All our plans hopes are in the water.. seems its slowly drifting away..I have to work and support the family. My husband continues to go to work but I dont know for how long he will be able to. I will keep all of you in my prayers, and at the same time draw strength from all of you.  It sounds as we are in the same situation.  You are right, as hard as they try, our friends will never understand . I hope you continue to come here as WE understand.  I will be praying for you. Robin  robinlbr Tue, 29 Jan 2008 00:00:00 GMT