“My” Story

I have found this blogging experience, sharing my journal online to bsuch a wonderful experience.

What I have gained as an individual from this whole experience just has to out weigh anything I may have delivered, it just has to.

I want to at least try to share the wonders of this experience with others. I realize not every one has a blog of their own in which to share their story. So many are going through so much, endure so much and doing it alone.

Some may be separated by distance or circumstances from loved ones and forced in that way to deal with it “alone”. Others may be literally surrounded by loved ones but are still dealing with it, “alone”. Possibly feeling the need to put on a brave face for those loved ones. But while doing that are keeping so much bottled up inside. There are times I know, when you can be in a room full of people full of loved ones and you can experience the loneliest feelings of all. This whole dying business can be the lonelist time of all. It is the only thing in this life time that we will ultimeatley face alone.

There is the saying which is so true. “Knowledge, without experience is only information”. I hope this will become a meeting spot for all that have the information and are in the midst of the experience.

No one has to face this alone, irregardless of your definition of alone. There are infact many of us sharing your experience and can relate to any feelings you may have. No one has to face this in any sense of the word, I am here many are here. Please share what you care to and know in doing so, we will understand.

Advertisements

56 Responses to “My” Story

  1. Alejandro Valdes says:

    Alejandro Valdes Says:
    January 23, 2009 at 12:55 pm edit

    I am 38 years old, single, no kids and dying of male breast cancer that has spread to my organs. I don’t know if I’ll make it through the year. I’m so sad that I will not be able to realize many of my dreams. I haven’t told anybody in my family of my illness because my mother was sick for over 2 years before she passed and many people in my family were put through a lot, including myself. I don’t want anybody to feel sorry for me, and I don’t want anybody to go through any pain because of my situation. I’ve accepted the fact that I will not be around for long, but I’m terrified of suffering. Although I am surrounded by people, I always feel alone. I often find confort in the hopes that god does really exist, and that there is something in store after I leave this world. I know everyone is dying, but I would have preffered not to know it was coming. I thank god for everything in my life and appreciate every breath. Many people dont have the privelege to live the life i’ve lived. Like somebody said in a previous comment, children die everyday. But after all of this , I battle fear and lonliness on a consistent basis.

    Dear Alejandro, I am sorry it has taken me a couple 0f days to respond to your comment, life sometimes seems to get in the way of my computer time.
    It did take courage for you to post the comment you did and I am honored that you would chose to share this with me.
    To say you are in a tough spot is such and understatement. I wish I had some magic words that I could say to at least ease your burden. I am not sure there are any such words.
    You are carrying one of the heaviest burdens a person can carry in this life time. It is as you say both a scary and a lonely time. It is lonely because there really is no one else that can truly relate to what you are going through. In many ways it is such a personal and private thing, that we must deal with and come to terms with on our own.
    But, even as I say that I know for myself the burden was eased tremendously by sharing it with my loved ones. Did I share it with them to cause them extra worry or grief, of course not. I shared with the hope that it would also give them extra time to prepare for what is coming. I would like to be able to say this was a truly noble deed on my part, but it wasn’t. I also knew that through them I would gain much support as I continue on this journey. It is an individual choice for you to make and I can only tell you what was best for me, which was indeed sharing this information. It has been a win/win situation, if you can call something like this a win/win. We have been able to provide mutual support going both ways. I know the grief my family will face and I am trying to ease that for them, or at least prepare them in anyway I can.
    I suppose my burden has been greatly eased as in my own mind I have no doubt about God, Heaven and what awaits both you and I, in fact what awaits everyone. I have longer than you to get “used” to the idea I suppose and I do not fear dying.
    I though am like you in have some fear of the physical process. I am told I have a high pain tolerance, well I don’t think so.
    I hope you don’t mind but I am going to email you directly. I do hope to hear back from you
    Bill

    • Dana Hansen says:

      Greetings,
      My name is Dr. Dana Hansen and I am faculty at Kent State University, College of Nursing. You may view my faculty website page at http://www.kent.edu/nursing/facstaff/bio/~dhansen1/.
      We are contacting you because my research team and I are interested in learning about the family caregiver’s experience with reading their loved one’s illness blog. If you have a caregiver that is interested in this study, please forward this information to them.
      I was inspired for this research during my sister-in-laws journey through breast cancer. She created a blog and after interacting on that blog I began to wonder what the experience of reading the blog was like for my brother-her caregiver. After consideration, we are conducting a research study that investigates the caregiver’s experience reading a blog written by a person with a life-limiting illness and are inviting you to participate. A nominal onetime payment of $50.00 will be sent to the participant once the interview is complete.
      Below are details of the study. You can also find out more by going to our study website: https://nursing.kent.edu/caretaker.
      Family caregivers are eligible to participate in the study if:
      • Both you and your loved one are 18 years or older
      • The family caregiver must participate in the blog by responding to the blog or reading the blog
      Procedure and Time Commitment:
      The family caregiver should go to our website where they can click on an icon labeled “participate in study” and will be asked to leave their contact information. I will then contact them to review the procedures of the study and determine if they are interested. If they are not, they can decline to participate. If the family caregiver agrees to participate, they will complete a consent form and we will determine a time to conduct a 1-2 hour interview where we will ask questions about their experience as a caregiver interacting with their loved one on an illness blog. Participation is voluntary and participants may withdraw from the study at any time without penalty or loss of benefits to which they are otherwise entitled.
      Thank you for your time and consideration in posting an invitation to our study on your website,
      Dr. Dana Hansen
      Dana Hansen RN, PhD
      Assistant Professor
      Kent State University, College of Nursing
      113 Henderson Hall, P. O. Box 5190, Kent, OH 44242

  2. erstwhile says:

    If I were your family, I would want to know your situation. To share the fear, pain and unknown with you. I would not want you to keep this from me. I would try to benefit you in a way only family can. Just my thought on the fact that you have not told your family.
    I respect your choice, but I had an opinion to share.

  3. Niobium says:

    Alejandro- Tell your family. If not for yourself, for them. Don’t leave them in the dark, regretting a lost opportunity to let you know how much they care for you. Sometimes, it is a situation like this that allows people to open up in ways that they want to, but otherwise do not know how. I think you’ll find great comfort once you stop carrying the weight of the situation alone. Everyone goes through a lot in life. Don’t let the past experiences that your family has endured prevent you from receiving their support and love. You are missing out on blessings more than you can comprehend.

    Peace to you!

    • matt says:

      i am a 22 yo male dying i told my family and no one knew what to say or how to act they werent there to talk they were in denial even my closest friends just didnt want to talk about it they were no support this is something you deal with on your own theyre not dying you are and the sooner you accept what is going on and what is to come the sooner you can start to feel at ease and like your ready to go and you start to be thankful for the life you lived and how you impacted people
      the one big thing that haunted me for forever was all the bad things i had done in my life and wondering if god would forgive me when i couldnt even forgive me

  4. Denise says:

    My sister and I were not told that our father was dying. We found out after he died that he and his wife had known for months in advance. This experinece left my sister and me angry and sad. We felt like we have been cheated out of an opportunity for some meaning ful last moments and a chance to give our love to him (by whatever we could do for him) one last time. We have forgiven our father and step-mother but have learned a lesson about sharing with people who love you. I know my father wasn’t trying to be selfish or exclude us, but that was how it felt. I love him for wanting to be strong for us to the very end but I wished he hadn’t done it that way.

    Hi Denise, I am sorry to hear of the passing of your father. I am glad you can appreciate your father was not being selfish, nor was he trying to exclude from his life. If anything I am sure he was trying to spare you the grief and pain. I suppose a better way to but it would be to spare you the pain until the time came when it was inevitable. I am sure his motives were based on love.
    Having said that, though I can certainly understand your feelings. I imagine it feels like being deprived of a “special” time with him.
    Love is what counts in the end. You know of his love for you as I am sure he knew of yours for him.
    With the loss of a loved one the pain and grief can seem unbearable at times. We each deal with it in our own way. My prayers are with you as you find your way.
    I do thank you for sharing your story with me.
    Bill

  5. Johnna says:

    Searching for comfort I came across this site via an engine search.

    My mother, whom I have been out of contact with for several years had a massive heart attack about a month ago. This was an emotional process for me, not just in the fact that she had a heart attack but all those other emotions/pain as well.
    Though my mother was having medical heart surgery and I was undergoing spiritual heart surgery.
    Through God’s grace I made the 850 mile trip to visit my mother in the hospital and am so glad that I did. I did not want her to leave this world without knowing that I loved her no matter what. It was a wonderful visit for her and I both.

    Today she is still in the hospital and the ventilator was removed at her request. I’m having a very hard time as to if I should try to make another trip to see her. I’m still 850 miles away and it’s so hard not being there with/for her. I spoke with her on the phone last night and it was so hard to hold back the tears. She was able to say things to me that she couldn’t say when I was there and vice versa. I think we were both hoping for the best and thinking we’d see each other again soon and start a new relationship. We are not promised tomorrow.

    Last night on the phone she told me she loved me and she was sorry for all the things she had done. I told her it was water under the bridge and that I was sorry to. She was not able to say much, as she is very weak. My heart is so broken.
    Last night I stayed up looking through old photographs of times we shared. I laughed and cried for hours through them all.
    I want so much to ask her how she feels or where she stands in her faith, as I am a Christian and I don’t want to say goodbye to her…I want to say until I see you again, in heaven. At the same time, I don’t want to cause her any stress.

    The doctors say she may live an hour at this point, or two weeks, it’s uncertain but her heart is very very weak.

    I will speak with her again on the phone tonight and want so much to comfort her but am at a loss for words. I pray God will give them to me.

    Hi Johnna, You are in such a painful place, My heart truly goes out to you, your mother and your entire family. All are in my prayers.
    I am so very glad you had the opportunity to reconnect with your mother prior to her passing. I am sure that has meant the world to both of you. I can only imagine that it has lightened her load as she nears the end. I wish I had some words to share that would lessen the pain for all but at a time like this, I just really don’t think there are any.
    You are a Christian, turn to God, lean on Him and your beliefs for support. I do not believe we truly have to ever say good bye to anyone in our lives. We all will have the opportunity to be reunited on other side. Saying see you later in my mind is perfectly acceptable.
    Should you make that difficult trip again? There is no real right or wrong answer to this, it all depends on how you feel in your heart. Looking forward into the future, will you feel better within your heart knowing you made every effort to see her for the last time, will you regret it if you don’t?
    A 850 mile trip is difficult and expensive, no doubt about that. I don’t know your circumstances and it could be virtually impossible to make it. If that is the case, don’t fret about it. Instead turn your energy to love on the telephone. You said it yourself, there are times when it is easier it seems to say things on the phone than it is in person. Share your love, let nothing go unsaid.
    I thank you for sharing your feelings as you have and ask that you please continue to do so.
    You are in my thoughts, my mind and prayers.
    Bill

  6. Sarah Jordan says:

    Johnna,
    It is so hard to lose a parent. I’ve lost both of mine long ago, and now my children are losing me as I die of lung cancer. From the parent’s point of view, I can tell you that the only thing that matters to me is the expression of love from my family. It turns out in the end that the only thing that matters is love…whether it comes from a visit or a phone call.
    God’s peace to you,
    Sarah

  7. planetcity1 says:

    Johnna:

    Bill & Sarah have spoken wisely.

    If you speak to your Mom again, tell her you love her without conditions.

    [Since she asked for the vent to be removed, I would say she has already made
    her peace with God and is fully ready to jouney home.]

    My thoughts and prayers are with you at this most difficult time…

  8. Morgan Ott says:

    Alejandro Valdes-
    I can understand your decision and might have done so myself. No matter what others say, stay strong to your own self and the world can be yours. When I say stay strong I mean strong not stubborn. And remember that when it all comes to it, we will always be alone, no matter how many touch our lives. Good luck to you and all your family.

    P.S. I would love to hear about your experiences.

  9. johnny says:

    i have approxiamately 2-3 weeks to live. I would like to publish my thoughts, feelings and experience. I do not want compensation or compassion. Just a lending air. Where is the best place to write?

    Hi Johnny. I am sorry to hear of your medical condition, you are in my prayers.
    I would be honored to have you share any thought or feelings you may wish to right here on this blog. Leave a comment or comments just as you did now. I am sure many will be interested in reading what you have to say. You will also I am sure gain a lot of loving support from the many readers.
    I do hope to hear from you
    Bill

    • planetcity1 says:

      Johnny:
      You can post here as Bill has suggested, and a large number of people will view those posts. Or you can create your own blog, if you want your posts on a personal site.

      Thank you for your willingness to publish your thoughts and feelings.

  10. Morgan Ott says:

    Johnna-
    Im am sorry to hear about your mother. I hope that you can learn to forgive her and allow her peace. Remember: Life can lead to Heavon or Hell but Love can lead to eternal bliss and joy.

  11. elleica says:

    Reading the post and the comments here, I have discovered one of the great purposes and advantages that blogs give. Indeed blogs become a reason to air out the most intimate emotions and ideas one may have – ideas or thoughts that are sometimes to difficult to share with the people around us.

    My perspective in life and in blogging has indeed widen because of what I’ve encountered in this blog.

    I hope that amidst the sufferings that we encounter, we somehow find the comfort that I know is There.

  12. joseph jares says:

    Hi,Iam saddened and yet have a clear understanding
    of your fates as well as my own.I used to clean up
    Radiation contamanated debries from the Marschall I
    slands “Enewetok Atoll” caused by early atomic bomb
    experiments.Although i am a relatively young man at
    50 years of age.I am not as alarmed or surprized as one would think.I have know for quite sometime as to
    the futuristic outcome and inherit risks involved.I
    hope in faith and wish all comfort in the time ahead
    for others i can not speak, as for my self i am scared
    and curious at the same time of the great unknown but
    in faith i step forward to my destiny.
    Former Soldier
    Father Friend
    Son and I
    Ty for
    sharing
    time…

    Hello Joseph, I thank you for sharing as you have. I welcome you, I ask you to return often and share more of your journey.
    Bill

    • planetcity1 says:

      Thank you for sharing a bit of your story.

      ((((((( joseph)))))))

      I hope you feel welcome here and will post again.

    • Lynda says:

      Hi Joey,
      You have touched many lives in yr life.
      Many people do care about u and will help u through this.
      (((((((((joey))))))
      love, Lynda

      hi Lynda, thank you for stopping by and leaving the loving message for Joey. All messages are always welcome

  13. Jo Hart says:

    Joseph, in my thoughts and prayers you will be.

  14. Lynda says:

    Joey,
    I just want u to know, that even though we are many miles apart, I am still here for u. Feel free to talk to me anytime.
    ((((Joey))))
    love, lynda

  15. PLEASE FORGIVE ME AHEAD OF TIME FOR WHAT I AM ABOUT TO SAY IF THIS HURTS ANYONES FEELINGS BUT IT MUST BE SAID…………….
    LOOK DEEP WITHIN YOURSELF AS YOUR LAST DAYS ON THIS EARTH ARE COMING TO A CLOSE, LOOK AT IT AS YOU AND ONLY YOU HAVE TOUCH MANY SOULS WHILE YOU ARE HERE. DO NOT BE COLD WITHIN YOURSELF TO NOT LET THOSE THAT LOVE YOU, CARE FOR YOU, AND HAVE BEEN THERE FOR YOU IN ON WHAT IS HAPPENING TO YOU. IT IS LOVE THAT CAN HELP TURN THE PAIN AWAY, THE LONELY FEELINGS YOUR GOING THROUGH,AND THE FOREVER FEELINGS OF HELPLESSNESS THAT SURROUND YOU. YOUR LOVE ONES WILL BE HERE THIS LIFE, IN THE AFTER LIFE, AND THE NEXT LIFE. YOUR SOULS ARE CONNECTED TOGETHER AND YOUR SOUL DEPENDS ON THEM AS MUCH AS THERE SOULS DEPEND ON YOU. DO NOT LET THEM DOWN…..BRING YOUR LOVE TO ITS FULLEST POWER IN THE DAYS TO COME, IT IS YOU THAT CAN TEACH THE REST OF THIS WORLD ABOUT UNCONDITIONAL LOVE FOR ALL LIVING THINGS AS YOU WALK THE LINE TOWARDS THE BEST WORLD TO COME. SURE SORROW, SADNESS, AND LOSING YOU WILL EFFECT YOUR FAMILY BUT THEY DESERVE TO BE TOLD THE TRUTH. YOU MIGHT LEARN SOMETHING MORE ABOUT THEM THAN YOU COULD IMAGINE. IF THIS UPSETS ANYONE I AM SORRY BUT AT TIMES THERE MUST BE THE ONE PERSON THAT WILL NOT LET YOU HAVE THE PITTY. YOU HAVE TO LOOK AT ALL THINGS FROM A POSITIVE ASPECT IN ORDER FOR YOUR TRUE LOVE TO SHINE. REMEMBER ONE THING AS I CLOSE………WITHOUT YOU THE WORLD WOULD NOT BE A BETTER PLACE, WITHOUT YOUR LOVE PEOPLE CANNOT BELONG, WITHOUT YOUR HOPE PEOPLE COULD NOT SEE,WITHOUT YOUR DEATH PEOPLE WOULD NOT UNDERSTAND. WITHOUT YOUR TEACHING WE ALL BECOME THE SAND…..MY LOVE FROM MY SOUL ENCOURAGES YOU TO DO THE RIGHT THING WITH YOUR FAMILY AS THIS DAY GOES FORTH…….NOW IT IS UP TO YOU!

    Hi PURPLE HATTER. our thoughts are most definitely in line. Everything you have said is part of the message I have in my own rambling way been trying to make though out this journal. I thank you for sharing these thoughts and hope you will continue to do so.
    Thanks again.
    Bill

  16. Lynda says:

    Dear Purple hatter,
    True but honest words.
    I believe people should be around those with a postitive attitude. It is difficult to see someone u care about very much go through this. A man I know and care about is dying of cancer, his high spirits keep me motivated to treat him as a good close friend and not to have pity on him. Don’t get me wrong, I hate what he is going through , I just let him know daily I am here for him, across the miles, whenever he needs to talk.
    ((((((((joey)))))) , this is for u.
    LOVE, Lynda

    Hi Lynda you are going through a very difficult time, please keep that loving positive attitude. Also please feel free to return here at any time to share what ever or even to just vent if that is what you need to do at the time.
    You are in my heart and prayers.
    Bill

  17. LYNDA, YOUR VERY RIGHT IT IS HARD TO WATCH A LOVE ONE GO THROUGH ANY DEATH SENTENCE. I AM GOING TO GO OUT ON A LIMB HERE………
    I WATCHED A STEP FATHER SLOWLY DIE OF LIVER FAILURE BUT IT IS WHAT HE TAUGHT ME ABOUT LIFE THAT IS EVERLASTING………THE CIRCLE OF LIFE AND DEATH WE ALL WALK IS IMPORTANT FOR TRUE BEING.OUR SOULS ARE HERE TO LEARN, TO TEACH, TO FULFILL A GREATER GOOD. WE LEARN FROM DEATH TO CHARISH WHAT WE HAVE AS A BEING NOT WHAT WE CAN OWN. IF WE COULD ALL LEARN TO LIVE LIFE AS THIS DAY IS ALL THAT MATTERS, TO TOUCH SOULS AS SOULS, AND LEAVE THE WORLDLY STUFF BEHIND WE WOULD SURELY GROW AS BEINGS. TO UNDERSTAND DEATH IS TO UNDERSTAND LIFE. IT IS LOVE THAT MATTERS BEYOND ALL ELSE, IF YOU ARE DYING IT IS LOVE FOR WHAT YOU HAVE AT THIS VERY SECOND THAT COUNTS…THE TIME THAT IS LEFT..EACH SECOND HAS A MEANING, EACH BREATH IS A GLORY, EACH FEELING OF TOUCHING IS CONFORTING, TO LOVE FOR THAT ONE SECOND IS MORE POWERFUL THAN LIFE ITSELF FOR THAT COMES FROM THE EVERLASTING SOUL WHICH LIVES ON.

    Hi PURPLE HATTER, I thank you for leaving this comment. What you have said hits to the very core of everything I believe in. Very well said I do hope to hear more from you.
    Bill

  18. Esther says:

    I’m so touched by all the support and wisdom of so many of you.I started a blog as a way to lesson the every day stress. Then one day I learned my own sister was strickened with advance stage – cirhosis of the liver. I found my self coming back often to my blog, sometimes not knowing what I might write, but then one day I realized it doesn’t matter what we write. It’s more about how it eases the stress, loneliness, pain or the fear of the unknown that is to come. All I know is, it helps me.

    I’m glad there are other wonderful blogs out there to help me understand. All your posts and messages here, are Helping me understand more what my sister must be feeling, thinking and enduring each and everyday. Her and I have been on this journey from the beginning, qnd I will be with her in the end if that is God’s will. (if you’d like to, you can read more about our story in my blog under, About).

    PurpleHatter, I love what you wrote:

    “If you are dying, it is love for what you have at this very second that counts…The time that is left…each second has a meaning, each breath is a glory, each feeling of touching is conforting, to love for that one second is more powerful than life itself, for that comes from the everlasting soul which lives on.”

    Said, beautifully!
    Esther

  19. Hello Bill

    I would like to start off by telling you that my heart and prayers are with you. I cannot imagine what you are going through but know that you will always live in the hearts of those whom you’ve touched (including my own).

    My dear friend who is a mother of three young children has breast cancer, and her biggest concern about passing on, is that her children will grow up without her, not knowing who she was as a person. She wanted to leave them a sense of herself, her love, her faith and her memories. She found a website called myheartwill.com which has enabled her to do just that.
    She’s been able preserve, protect and pass on her legacy as a daughter, wife and mother. Moreover, it’s been such great therapy for her, it’s given her a sense of peace knowing that her family will forever have a place to look upon her, even when she is no longer by their side. She’s even recorded messages for everyone so that her voice is remembered as well.

    I know that you have already left this legacy of yours through your blog, but if you perhaps wanted to leave something more private for your family’s eyes only, this might warm your heart.

    You are in my prayers my friend, as all are others who are going through this difficult time, their family and friends.

    God bless!

  20. Joy says:

    My mother has been fighting cancer for 2 years now. The cancer started in her bowl and is now in her liver and lungs…and is growing.

    When i am at work i am fine. But as soon as i get home and see her my heart begins to ach and i feel like i am dying inside slowly.

    People always say that i am brave, but really i am not. I am sick of the uncertainty .. of fearing the worst after each CT scan . Of watching my mother in pain!

    Its not fair. You have a mother for a reason. To take care of you, to guide you through your life, to feel the joys and sadness with u. To love you just the way you are.

    Its been 2 years of her fighting and she is tierd. I cherish everything about her- they way she smells, the way she smiles, the way she hugs me when she thinks i am sleeping. To think that someday i will begin to forget the way she looks or the way she speaks is unbearable for me.

    I dont know how anyone who has written on this blog is coping with actually loosing someone when i can not even cope with the possibility of loosing my mother.

    I am scared, that sometimes i lay awake next to her while she sleeps, listening to her breathing.. taking in the sound of her lifes breath. To not hear that sound anymore will kill me.

    I am 22 years old and have an older sister who is now married and is not there anymore. I have a younger sister who keeps to herself and a younger brother who does not understand.

    Last night my mum asked if she could sleep in my bed. As she lay next to me she said that she was not scared of dying if that was what God had in store for her. She said that she was scared to leave my younger sister and brother behind when they are still so young. She told me that if anything happens to take care of them first always. I promised her that i would and that she need not worry.

    It took everything i had not to cry as she spoke- but as she feel asleep- i stayed awake listening to her breathing.

    Fear can destroy you.

    Cancer will kill you.

    But faith will cure you!

    … i am strong for my mum. She will never know how i feel about her cancer. She thinks that i am strong and for her i am. I will fight with her for as long as God gives her. And everyday i will thank God and pray for just one more day.

    Joy

    Hi Joy, I am very moved and touched by your comments. My heart and prayers go out to you and your family.
    I am honored that you would take the time to share such painful and personal thoughts.
    Your comment has affected me deeply, I am struggling to come up with a more adequate response. I will have more to say shortly.
    Bill

    • planetcity1 says:

      Joy:
      Thank you for your heartfelt post. The truth is, is after a loss of a loved one, you do much of the same thing you are doing now — you get up, put one foot in front
      of the other, and keep moving forward. Some days are easy, some days are not. Your Mum, however, will be there for you, not physically, of course, but most definitely in spirit, because love, like you have with her, is forever.

      You are stronger than you know.

      PC, thank you for responding to Joy with your wonderful words. I am working on a response but am struggling to find the words.

  21. Joy says:

    Bill,

    Today i did not cry.

    After i posted my story i felt like a weight was lifted- perhaps because i have not spoken about my thouhts and feelings to anyone close to me. I decided to write on your blog because after reading everyones blogs i believe that to express our pain to people who we dont know and who are in similiar situations is easier than those that know us.

    I now know that my mothers cancer has changed me. I did not notice it really till my best friend told me 2 days ago the following:

    ” you need to talk to me or to someone. You have changed. Your always angry and you hardly smile. You lash out at me when your upset and i will never say anything because i understand why you are doing this. It upsets me but i love you and am feeling what you are not able to express.I love your mum like crazy-so i understand what you feel. But you need to stop thinking. Stop focusing on what might happen and focus on what is happening otherwise your going to let your life pass you bye. I am here for you everyday. You need to focus on the good times with her- not the bad. Remember only the good times spent with your family. Life is always changing, things will always happen either good or bad- but they all happen for a reason.”

    When i heard this i cried so hard that my heart began to hurt. I cried and she held me whilst whispering I am sorry and i love you so much. And for the first time i reached out to another person and released every bit of emotion and thoughts. She listened and cried with me. And that was what i needed.

    We walked out of my room and my mum saw our puffy eyes and asked what was the matter. I told her we watched a sad movie- but i think she sensed something as she came and slept with me that night. The same night she told me she was not scared of dying.

    I am struggiling to handle the possibility of loosing my mum. To wake up and not see her, to come home and not hear her. Its got to be the most hardest thing knowing that a loved one will die- however not knowing when is even harder. Everyday i am scared. You need your mother. I want her so bad to be there through all my experiences as a woman. I dont want to get married or have kids without her there along side me. I am sometimes jealous that my sister has experienced this.

    This is life. Fear and uncertainty of when you die.
    It must mean that we do take advantage of the happy times we spend with our loved ones. Now those happy times do not seem enough. If this is greedy than i am a greedy person.

    Before i go to bed i pray to god. I think he might be unhappy with what i say. I ask why he has to take her out of all people. She has lead a hard life. Just before mum got cancer we went bankrupt. Lost our houses and my grandmother and granfather died. So much pain in 2 years. It cuts me up deeply that she has had such a bad life. Always struggling- and for what? To die at an early age. Is that life.

    Then i question god and ask why bad things happen to good people. There are people out there who do bad things and who always seem to get what they want. People say that everyone has a time and place.

    Yes, now i can see that my friend is right. I am angry. But how else am i to feel.

    Bill- cant imagine what you are going through. It must be hard for you- but your words to everyones comments shows how strong you are.

    PLANET CITY 1;

    Thankyou for your reply. You see i understand that i will need to get up and put one foot in front of the other because i have 2 younger siblings to take care of. I am from here in not going to think of what is going to happen in future.I am going to focus on now and what i can do to make life enjoyable for my family. I love my mum and can see that she will do anything for me. She is a strong woman. The doctors told her that she only had couple months to live but it has been 2 years- so you see, i have faith. I believe that happiness in her life is the cure for prolonging the enevetable.

    People worship celebs for acting or singing. I worship and idolise my mum for her strength, her motivation and her love.

    She is gods gift to me and my family. Without her i would not have turned out the way i am today. So i am greatful for the 22 years i have spent with her and for the many more i hope will come.

    Life is a precious gift indeed. But it can easily be stolen from us.

    Joy

    hi Joy, I am so very glad you returned to share more with us. I was in the midst of writing a response to your previous message when I noticed this second comment from you.I will finish it off and have it up as todays post.
    I am indeed happy to hear you felt a sense of relief or something after your last sharing. I understand what you are saying when you say that it is often easier to really open up and share with people you don’t know but are in similar situations. I am glad you found my blog. Please know you are always welcome to share what ever you wish and it will be received in a non judgemental supportive way. Here we have evolved into a community of loving supportive friends and you are welcome to join with us.
    I am so glad you had that conversation with your friend, glad that you have that friend there for you. It is so good to let out all those feelings and emotions, bottling them up can only cause them to surface in ways we don’t want. (the anger you spoke of). I am off to finish my post although reading this second comment of yours some of it you have already taken care of.
    Know you are in the hearts and prayers of many. Please check back in an hour or so I will have my post up for you. I trust you received my email.
    PS. Joy, I did my todays post based on your messages. Please check it out and let me know what you think
    Bill

    • Mel says:

      ((((((((((( Joy ))))))))))))

      Ironically I’m finding your story today–on a day when I’ve spent some time being sad over growing up without a mom in my life. I understand your envy of your sister. Few memories of my mother are truly mine. Most are stolen from stories my sister has shared with me–I was 5 when my mother died.

      On the flip side, I now have a daughter a bit older than you, who grew up slipping into my bedroom at night to curl up next to me–wanting to snuggle in every warm moment she could while she watched me struggle with cancer and then leukemia. She was the ‘responsible child’–very much like you with the brave face, taking care of everything she could in hopes of lightening my burdens. Forever trying to keep things and herself ‘together’–somehow feeling that was her job in the midst of the storms. She’s told me in part, it’s what kept her sane. It was a very difficult time with very difficult circumstances–for her, for me…..for her younger brother whom she protected and tried to parent when I was incapable.

      I’m graced to still be here…..and by all ‘rights’ I should not be. I’ve been gifted remissions that were against all odds.

      Even still my daughter lives with fear–today she and I are able to talk about it.
      There was a time she wouldn’t let herself do that…not with me. But there were friends, much like the one who held you and cried with you….and they gave her permission to just ‘be where she was and to feel all she felt’. As much as I urged her to do that with me, she couldn’t let herself. I understand that today and I understood that then.

      Just as your mom understands….cuz she does.

      Yaknow–as life put difficulties in our path so did it strengthen and fortify something in me and in her….and between the two of us. I hear and feel that same stength in what you shared here–there’s something between yourself and your mother that won’t/cannot be taken from you–it will/can only be fortified and strengthened.
      You’re a wisened and loving 22 year old who’s become all that she is because of the joys and struggles in her life….because of the joyously wonderful people G-d’s made efforts to put in your path. I’m grateful for those people–and I’m grateful for the arrangements for me to find this here, today….now.

      Today is a very important day. I’ll trust that you spent it loving frequently, laughing and seeing/ feeling the love that’s being sent to you from the uncanniest of places.

      (((((((((((( Joy )))))))))))))

  22. Joy says:

    Bill,

    Thankyou for your post. Your comments have effected me deeply.

    … Reading back my first post is very emotional and written at a point where i had yet again received bad news.

    As you put it- there is nothing really i can do for her but try to help in all other ways possible.

    In the begining i really believed that God was punishing us for something we have done. But now, i think that everyone has a time and place. That everyone is tested. That the most important thing that now i constantly remember is that i could have had regrets if anything had happened to her suddenly- like a car accident. But knowing she is ill has allowed me to prepare and to cross off any regrets that i have. Now i have no regrets. I have ensured that if something was to happen she knows exactly how much i love her and appreciate her.

    I think what is eating away at me is seeing her suffering. My heart breaks in a million pieces each time i go with her to see her doctor. When we get there she is hopeful and positive. Then out comes the CT scan report along with the doctors comments and the pain i see in her eyes at that momment is undescribable. And if i saw the pain ust the one time i would be able to get past it. But every couple of months i see the same reaction. The same sad eyes, the same glisten of tears that she tries not to let fall in front of me. Its shattering her hopes slowly… Sure it is hard- but for her it is even harder. I understand this very much. She wants to see her children grow up. To become all they can be.

    If there was a sign or even a single piece of news that was good then maybe just maybe her hope will not falter.

    My brother and sister are feeling the same thing i am feeling. I am there for them. They do not bother my mum with any requests anymore. My younger sister is studying and working. She does not like to go out- which i worry about sometimes but have to many things on my plate to actually take care of at this point. My brother is my child as my mum puts it. I have raised him even before my mother fell ill. She worked and i would raise him. I must say i am so very proud of the way he turned out. He is extremely smart and takes on responsibilites that i do not even ask of him. He does not understand my mothers cancer very well or so i thought unil today. Today i walked into his room and went to use his computer. His favorite section was filled with information on cancer. My heart sank when i saw this as part of me does not want him to know the extent of her cancer. To protect him i guess i do not want him to feel what i am feeling. But that is probably selfish as it might be harder for him to deal with if something happens later on. He must think that i am not being honest with him about everything as whenever he has asked i do not tell him the truth. To him her scans are fine and nothing is increasing- it is stable.

    I would never dream of expressing my feelings to my sisters or brother. I know i am the strong one. If i were to breakdown in front of them i dont know what that would do to them and have no intention of finding out. My friends are my strength and keep me going.

    I am a very happy person. If you see me you can not tell that anything is wrong. But then there are those few momments when i am alone that i release my pain. I feel and have noticed that if i am happy around my mum and sisters and brothers they to are happy. My goal since my mums cancer is to not let her think about it as much as possible which is hard as i think about it ever day.

    Its amazing how we take out loved ones for granted and as soon as we find out they are sick we learn to appreciate them more. I think that life is about our struggles and that we are tested by God. To show him that we have faith in his descisions.

    I have taken up alot of your space, which i hope you dont mind. Everyone faces hardships in life but we just dont realise it.

    Thankyou so much for your kind words- you are a very amazing person.

    ***Mel***

    (Thanking you for sharing your experience with me)

    Your post has given me strength and restored my faith once again.

    It seems your daughter must have been feeling the same way i feel. However she should be greatful that you are still alive- you have been given another chance at life.
    You must have gone through hell with your illnesses. But you are extremely luck person ! Your story has effected me very much. I am so happy by what you have overcome as it makes me more positive.

    When you write of your daughter i feel you are writing about myself. She must have felt exactly as i am feeling. I think mainly it is fear of you or my mother not being around to support us in life. I would give anything for my mum to be in remission. I would give anything to be able to confide in her and tell her how i am feeling but as your daughter also felt i would never dream of doing this. You might not realise it now- but it would kill you to hear what really we are feeling. And to know that your kids are suffering as a result of your suffering would damage more than just mentally but emotionally. I would not want my mother to feel like she can not cry to me, or show me her pain. I would rather see it and feel it because it is reality. However, the begining was awful. Especially after surgery. I was 20 years old at this stage and waking up at 1 in the morning and finding your mum vomiting while she was sleeping is not something i want to relive again. Her fever had reached 40, and driving to the emergency ward was the most frightening thing i have ever experienced. I dont know how many red lights i ran and would do it again if need be. She stayed in hospital for 1 week the doctors fearing that the nemonia would kill her. Mind you she had her chemo on at this stage and i begged them to take her chemo out but they would not.

    Your story has me feeling secure- if that makes any sense. That you have overcome makes me smile. You had a long journey-and i pray that this is over for you.

    My mum is sick today. I do not have any emotion regarding this matter anymore as it is like now i am immune to the word. A part of everyday life.

    You said that the stuggles are strengthing us. This is true. I am stronger than i ever thought i could or would be.

    Joy

    Joy, I thank you so much honoring us by sharing your thoughts and feelings. My prayers go to you and your family. Through you selfless act of sharing as you are in this so difficult time you are inspiring others, helping others, myself included. You are giving me a clearer in sight into what it is my own family is enduing and I thank you.
    One point, my friend. In your comment you apologize for “taking up so much space”. You are always welcome here and welcome to take as much space as you want or need.
    I have always believed such situations are much harder on the families. You have opened my eyes to exactly how much harder. I thank you, may God bless you and your entire family
    Bill

    • Mel says:

      The daughter tells me she is stronger than she ever wanted to be. She’s an awesome person–gifted and loving. Reading you, is like hearing her. She tells the same tales and had many of the same answers you described.

      I know that ‘shattering of hope’ that came with every test, every appointment. I managed to take myself most times–I refused to let my children be a part of that process for that very reason. It would take me days to wrap my head around talking any of it, if I talked any of it at all. And I didn’t give a lot of information–much like the decision you made with your brother, I wanted to keep a sense of ‘normalcy’ for everyone around me….shield them from the painful information that seemed neverending. They were kiddos–I wanted them to BE kiddos. And there was a bit of me that needed them ignorant to the facts. It was all I could do to keep myself together while I tried to do whatever was in front of me. I didn’t want the realities to become huge–overpowering the ‘living’ day I was in. I think it was my way of protecting what little ‘hope’ I could muster.

      There’s still that fear that niggles at me, every blood test, every physician’s visit, every outward sign that might be an indication of the diseases’ return. I’ve tried very hard to keep it contained to the day of the results–though I’d be lying to say I’m a master at doing that. I do have worries. The daughter worries.
      Today–because of the nature of our relationship and the circumstances, she can tell me and ask about it. But she also tells me there’s this ‘steeling of herself’ that happens….preparing herself for doing the disease all over again, playing time forward to what life will look like without a mother in it.

      We still live with it–it still leaves it’s mark. We each deal with it in the best way we know how–neither of us do it perfectly. But we do the best we can.

      I know you’re doing the best that you can. You are an amazing young woman–and just like the daughter, you’ve done the best you can do to this moment in time. I’m proud for the strength you’ve found and the courage that’s found you–they’re very difficult circumstances to contend with and you’re doing the very best you can….staying open to doing it differently as the circumstances avail themself to you. I’m clear the love grows stronger and the need for ridding yourself of any regrets has been a good plan for you. It frees you up to simply love. And you do that well.

      Thank you.
      As Esther noted, your sharing helped ME. I love my daughter with my heart and soul….my whole being. This year she gifted me with a granddaughter–a gift that I never, in the dreams that I dared not dream, thought I’d be given.

      Hope was an illusive thing… And while I have remission today, it was the experience of having to walk through all that that give me a very FULL knowledge of what “living in today, one day at a time” really, truly means.
      “And the greatest of these is LOVE” is the best lesson I can share with anyone–cuz it’s true.
      And you, dearheart–are loving very very VERY well.

      *HUGE hugs*
      I do hope you continue to grace us with your presence–you’ve made my day….and that’s a wonderful gift to give.

      Blessings and continued prayers for you and yours.
      And I do mean that.

    • Mel says:

      *thinking of you and sending prayers*

  23. Esther says:

    Joy, you have touched my heart so deeply! Your words have helped me understand what my youngest daughter must be thinking or feelings (or my other children). We want so desperately to be strong for them, and never realize how strong they’re being for US! Thank you for giving me a peek into their soul.

    You are an amazing young woman!

    Take Care
    Esther H.

  24. Joy says:

    ***MEL***

    I read your post – 2 days ago.

    I read it over and over again. Trying to reply- but had no words for you.

    (SIGHING)

    Your a amazing person. What you have overcome is unbelievable. It brings hope to others- to me!

    I thought that each day it would get easier. But its not.

    In the morning i wake up and its so easy, but as the day progresses it gets harder and harder. The smile you see in the morning slowly begins to feel heavy and eventually disappears. By the evening i am in that place again. Stuck between fear and uncertainty.

    Before i could not do anything about this. The past two days when i have gotten home, i have re-read your blog and its a little easier.

    Today was my brothers birthday 🙂

    He asked me to take him to the movies yesterday. But i was busy. All day at work today his dissapointed face nagged at me. I can not refuse him anything. I took him today for his birthday and all my sisters decided to come.

    We sang for his birthday as he cut his cake, and he kind of sneaked a peak at my mum to see her mood. She was laughing and smiling and so he smiled back- it was as though he was unsure if he wanted to smile if she was not. Isnt that ridiculous. Seeing that broke me. The lights were off and only the candles illuminated the room- but i was watching-because i know. I did the same thing on my birthday two weeks ago and the same thing on my mums birthay 3 weeks ago. But this is what it does. Its fear. Its knowing that fear and what it does. Its with us at every single momment of every single day.

    Your still living in fear and you have succeeded against your illnesses.

    I am worried because i have alot of pain and anger in me. I have written about some of it- but not all. I fear that if i do- that if i say it or write it, i will destroy my sanity.

    Fear will never leave us alone. Now i am uncertain as to whether it is my friend or my enemy.

    ***Esther***
    I am glad that i have helped you to understand how your children might feel- best of luck with everythinhg.

    Joy

    • Maria says:

      This is for Joy..

      God has not given us a spirit of fear.. But of sound Mind… We have faced losing our son 5 times. it got to the point that i thought God was playing with us..
      My Son has a heart condition.. he was diagnosed when he was 2 years old.. it was a small hole at first in the aortic vavle..it slowing began to deteriorate .
      and he went into heart failer… it was the hardst to watch…his doctor had released him and told us to take him home.. that he would make him confortable but he had six months to live… I went numb all over . I could not believe that this was happening… We thought it was just a tummy ache… for month our little boy kept complaining about a tummy ache.. and we took him to the doctor severy times.. But the doctor missed diagnosed him.. since than he has had many surgerys and has servived them all.. the last heart surgery was 2 years ago..he is doing so well he has spent a life time in the hospital and continues to go every month for check ups.. he is now 23 years old…and living his life to the fullest .
      he tells me … Mom where is your faith!
      Even though my faith is in God Almighty.. I am still a mom that worries about him..there are limitations on the things he can do..he graduated with a 4.0 in o7..in a wheel chair because his heart was weak .
      we did not know that soon he would have massive
      bleeding during surgery.. his arteries burst and he was bleed to death.. they could not stop the blood.. the surgeons were pumping blood in him so fast .. and he was loosing even faster.. they was no blood to the brain and no blood to the lower part of his body…he was in bad shape according to the doctors.. when they told us that he had been bleeding for 8 hours … We were in shock all we could do was hold on to each other and pray and trust God for our son…as we walked out into the waiting room there were wall to wall family and friends and our Pastors .
      We began to pray and with in an hour the blood stop and he was stable condition.. as the weeks followed his recovery was hard .. But he recovered and he is a walking miracle of God… because as his blood left his body.. The Blood of JesuS coverd his..And he is alive today because of Him.. so if you are facing sickness in your body.. dont give up ask God to help you… Thanks Maria Larragoitiy

  25. Mel says:

    (((((((((((( Joy )))))))))))))

    One of my greatest joys today is that you’ve allowed yourself to return here to let people share with you–seriously. It’s a tough journey, company along the way is a good thing.

    Belated birthday greetings to your brother–and to you and your mother.
    I know how uncertain the days get–and the mood barometer that we had going on here. Children scrambling to figure out what was ‘appropriate’ based on how mom was feeling (physically and emotionally). I really tried to be a good actress and most times I succeeded–somedays the energy just wasn’t there and it was too ugly. (I thought I deserved an Oscar for my performance–the girl would ask for the ‘Best Supporting Actress’ one, I’m sure) I’m sure you’re aware of that acting that goes on and the coverups we all try hard to do. The daughter was all too ‘tuned in’ to that–she was such a good ‘caretaker’. Still is, truth be told……

    It took the girl (aka the daughter) quite some time to be able to talk with me about this stuff–she feared if she did, she’d be ‘tempting fate’ and opening up pandora’s box. Mostly, like you, she was scared if she stated talking and let herself ‘feel everything she felt’ that she’d start crying and never stop. I know that ‘barely holding on so don’t PUSH me to talk about that stuff cuz I’ll lose it’ panic. I don’t know about others, but I do know that with the constant flip flopping of hope and emotions, waiting from one test to another–living on that constant edge, it really did feel like I was on the verge of losing it all the time. I was grateful other people were the confidants for the girl–relieved she was dumping some of it… at least ‘enough’ that she could function and still have some degree of ‘normalcy’ in her life.

    She has a notebook (or twenty) of writings/scribblings/drawings she did during that period of time in her life. Putting a pen to paper helped her have a release that she really needed then. I don’t know if that’s an option you feel safe executing, it was a good thing for her to just get stuff out of her head so she could move on to do whatever got put in front of her that day (a coping tool she watched me use plenty of times, let me assure you).

    I’d say to you the same thing I said to the girl “In your own time, if it’s right for you–when it’s right for you…” I’d also say….Fear isn’t an all bad thing–there are good fears, ones that keep you from leaving a candle burning in an empty house. And then there’s the F.E.A.R. (F.alse E.vidence A.ppearing R.eal) fear that we need help sifting through cuz it’s based on things that just aren’t true, ones we need to trudge through freaking scared to come to an understanding of what’s REALLY true. (an itty bitty spider isn’t going to crawl up your nose and into your brain, really…LOL…until the girl told me that was her F.E.A.R. she ran around screaming every time she saw one, NO foolin’!) Part of my job and the job of the people who care about me/my kiddos is to help us face our fears and see which is which. That’s just what people who care about each other DO for each other, yaknow?

    Anyway.. *laughing* I’m going on and on and I don’t mean to do that. But I do mean to make sure you know that you’re not alone–cuz it’s a tough journey to do even with the company of others who’ll support you. There’s so many twists and turns to contend with–a place to be heard, a safe place to just say what’s true for you….is a good thing for everyone, yaknow?

    You take care–and please..stick around. Here’s a ‘good’ place to just ‘be where you are’, yaknow?

    Oh–and by the way…last year the daughter was diagnosed with a cancer we didn’t figure on.
    It was the hyper vigilance based on her mother’s health history which led to the early detection, diagnosis, treatment and consequent remission she’s been given today.

    We’re all very, VERY blessed/graced to have what we have today.
    I thought you could use the rest of the story–just for knowledge that despite the storm feeling ugly and awful there’s been so many, many gifts that have come from it.

    ((((((((((((( Joy ))))))))))))))

    Blessings to you and yours–and, of course Happy Christmas to you all.

  26. Afia says:

    Hello Bill,
    I have read so many stories, and I am so touched by each one and your own. I so need some advice from you and comments from anyone else please.

    I am in love with a man who has lymphatic cancer. It was discovered too late. And now, he has made the decision not to take any medication, as the side effects greatly inhibit him in so many ways. Drs cannot say how long for sure – maybe a few years, maybe 5 max.
    He is my best friend. We were not together when he was diagnosed. I was married, but i was actually in love with him. But, at the time, he was with someone else. I have since split up with my husband and divorced last year. I was grief stricken when i found out about his cancer 2 years ago, but was not able to be there for him, as my husband was very jealous of him.

    Now, we have realised our true feelings for eachother, but he is very reluctant to be with me, as I have children.

  27. Afia says:

    i want to be with him. I want to be there for him. I wish to share every moment with him. my children are aged 11 and 13. I don’t know how this will effect them, or if I should just leave things alone and not have a relationship with him. In my heart I know that I have always loved him so deeply. His illness has made me see how important he is to me.

    He has gone abroad to travel for a while. And I am so glad he is doing that for himself. When he returns I want to be with him. But just as a friend or to have a meaningful loving relationship with him? Maybe even marriage?

    love and peace to you all

    Afia xxxx

  28. enreal says:

    Be strong and may your voice continue to carry on the wings of the angels that surround you every moment… be as strong as your spirit. blessings

  29. Afia says:

    🙂 Thank you for your kind wishes…..really appreciate that.

    I asked God, to give me what is best for me. I want and need to surrender my own will. Thats hard to do….sometimes we want something, we struggle and fight for it, and it feels like the right thing to do. I want to yield, and just let go now….it is my wish to be with the one i love, with or without the cancer, makes no difference to me….

    Peace and blessings to you.

  30. Natalya says:

    Dear Bill,

    My name is Natalya and I run a website in the UK for anyone affected by a high grade brain tumour. Firstly let me say I have been reading your blog for a while now and find your posts very thought provoking.

    I wanted to contact you to see if you would be ok with me listing your blog in our blog buddies section? You can view it here http://www.btbuddies.org.uk/blog-buddies.html

    Take care.

    Natalya

    Hi Natalya, I visited your site and found it to be ecxellent. I would be honored to included on your buddies section.

  31. Nic says:

    Bill I want to thank you for this blog. When I was 26 (am 33 now; this was in 2003) I was diagnosed with a lung disease that often proves terminal, as a result of a genetic disorder I was born with. At the time – the expectancy was 5-10 years.
    Before that, though I know issues could always come I had relatively few problems, except for waiting for that shoe to drop. Then it did and it didn’t seem so bad at first, but the last few years have been very difficult. I almost died twice, had numerous surgeries and of course now have to manage not just one but two chronic illnesses. I do my best but sometimes its rough. I keep my game face on but lately I have been so tired that I have been doing some very silent grieving over my situation which is probably healthy all considering. I just want to say that after 5 minutes of reading your blog I felt relieved — like somebody gets it. It doesn’t even matter if it’s days, months, years, only someone who walks this walk can truly understand — lord love the ones who try out of love and respect. I want to thank you for this. Helps me make sense of my emotions and why out of the blue sometimes the reality hits even though I was reconciled some time ago. Maybe I’ll start my own private blog because writing always helped me, but maybe in the face of everything it was just too painful. But maybe now is the time to let it out even if only for my own eyes and understanding.
    In the meantime I will continue to follow your blog.
    Bless you for being so open. Its not easy to put all this private pain and emotion out there for others, but those of us facing similar situations respect and appreciate it very much.

    I thank you for your kind words and for sharing a part of your story with us. This is a difficult topic for so many to talk about or even think about. By being open, sharing thoughts and feelings we can provide, I hope, a better understanding and mutual support. I invite you to continue to share.

  32. pattiredd says:

    Hi to everyone here – especially you Nic (you are the latest response to Bill’s blog here)…and so much of what you have written is so heartfelt and sad, I feel compelled to write my feelings.

    First, I think Bill’s blog has such meaning and openness and I’m grateful that he is here for so many people to read and contemplate.

    Each of us are on our “one way street” in different ways in so many scary ways too. Blogging for me has been a healthy way to deal with my feelings. You’re so right – our emotions just bust out of “the blue,” and sometimes we just don’t know what to do with it all!

    Fear. Anger. All sorts of feelings just wash over us as we deal with the personal anquish and this weird and wild journey of the end of our lives.

    Yesterday, for instance, I was in the waiting room of my doctor, and realized that I had missed my dosage of tincture of opium…she was sitting quietly with me at the moment. I pulled out my bottle and syringe, and as I took it, another patient came into the waiting room, and overheard my doctor say, “don’t forget to take the opium you need because you will start into withdrawals, and we can’t have you go through that.” The male patient who walked in looked wide-eyed at us, and my doctor turned around, and said to him, “now, now…don’t get too excited! This is not a usual drug that is prescribed!” I’m sure she talked to him later privately about the situation to calm his mind down a little….

    Today I laugh to myself quietly about it.

    We, who are going through terminal disease have a lot of very strange experiences – real life, and in our faces. Blogging about these experiences is a great thing!

    This is about all of us. This is a reality that each of us will face one way or another. Some of have the time to “reconcile,” and others don’t have but a second to realize the end is there. Which is better? Oh, who the hell knows?! Just know that we are not all alone. We can befriend each other and know that we are not alone – – we have millions and billions of people rowing in the same waters. Keep the faith! Keeping smiling! And, make a mess now and again…that’s life; a mess sometimes! 🙂 Cheers and best wishes. Patti http://www.pattiredd.com

    Thanks Bill for your blow. YOU ROCK!

  33. Ruthie says:

    Hi! Just found your blog “by chance” and thought I would quickly introduce myself. I, too, have CHF…was diagnosed in 1996. I’m proof that, with the meds and exercise (if possible) and rest and proper diet, one can live quite a while with CHF…not the proverbial 5 years and you’re done idea any more. I also have a spinal cord injury that causes pain 24/7. Add that to severe arthritis and you find me totally disabled and in a wheelchair. But I am vertical so I am happy.

    I am nearly 60 years old, have one son and 1 and 8/9 grandchildren (2nd one is due the end of August), and am truly blessed. While life is hard and full of pain and meds and constant attention to detail, it’s also full and busy and traumatic and difficult and fulfilling and exciting and boring and And AND….. Am looking forward to reading more of your blog.

  34. matt says:

    i am 22 yo and are dying the doctors have told me theres nothing they can do cause what i have is very rare and happens to such few people that there has been much research done into it i have felt alone and distant from evryone now for awhile no one has been there for me to talk too and i have been dealing with this on my own i told my family and close friends what is going on and they seem to be in denial or like distant cause i guess they dont know what to say to me my ma keeps on trying to be positive and telling me things of encoragement to keep fighting but im really starting to think whats the purpose of trying to fight off the inevitable ive been having trouble with dealing with all my life regrets and bad things i have done to people and myself and ive been trying to feel at peace and certain days i feel like i am ready and others i still have this feeling of sorrow and anxiety its just that i am so young and havent been able to do much with my life and knowing i dont have much time left all the things i never got to do cause i put off thinking i would have a full life made me resentful and angry at myself there are things i want to say to people before i go but i am afraid of what there reactions might be so i keep to myself i wana tell the girl i love that i love her still and wish nothing but the best fro her and that she was my closest and best friend i ever had and not having her by my side now is hurting me but i dont want her to know i dont wana put her through any emotional distress if she still cares
    i am just looking for an answer of what to do and how to go about things i know i am pretty much on my own emotionally no one can feel what i am going through i just need to know how to get closure with evrybody

    Hi Matt, welcome to the blog. I thank you for taking the time for leave your comment. Well, I hear you buddy and I really can relate to so much of what you are saying. Now more than ever in the past to I understand how the feelings of loneliness can make your situation so very much more difficult to deal with In that regard know you have found a group here that will be more than happy to support you in anyway we can.
    Do you mind sharing a little about what illness it is that you have. The doctors have told you there is no treatment but what else have they told you?
    I know it can be very difficult for family and friends to be around the ill. It is not that they don’t want to help and comfort, so often it is just they don’t know what to say. For each person the situation is different as to how to get the closure you are seeking. I am not a doctor, not a man of the clergy or any sort of therapyst. I am just a guy sharing my thoughts and feelings based on my own experiences.
    I have much I could share with you. Today my energy level is just zero, I will try to get an email out to your tomorrow or the next day. Hope to hear more from you here on the blog
    Bill

    • matt says:

      i have a brain injury and during the trauma my pituitary gland was damaged and now has thrown off my entire endocrine sysytem i am not producing essential hormones to live and i was being given synthetic ones for a while with steroids but i stopped responding to treatment and hormone levels are so low now my normal body functions are starting to mess up and fail i am going to several neuroendocrinolgists and they are all saying the same thing it took me weeks after getting out of the hospital to find doctors to evaluate or even take on my case

      • Bliss Bong says:

        I am young, 24, and I have a problem with my hormones too, I’m deadly tired all time, and my family has to do everything for me. I can’t walk or keep down food. I am depressed and cry all the time.

        I will think of you, I hope you will be ok. My problem isn’t as serious as yours, but I have put my affairs in order (will, final wishes, giving away clothes), I find that helps me psychologically. I am trying to see if I can find a good counselor to cope. Maybe one might be beneficial. I know it’s hard to prepare to die at our age……it’s hard because we never had the chance to do lots of things (career, start a family, travel). I am trying to take up meditation to calm myself if/when “my time comes”.

        Death is such a taboo in our society, hardly anyone sees anyone die or talks about it. But everyone does. There is so much focus on living or extending life in our culture, that we look the other way and ignore dying. It is up to us sometimes to find our own way to cope. Maybe that’s why your family and friends have been distant. They don’t know how to respond.

      • Bliss Bong says:

        Oh by the way, you should tell her you love her. I am experiencing the same issue of people telling me to “stay positive”. People always are saying WHEN you get better, but I’m afraid deep down it’s BS. I’m going in a while and I can feel it. There is a hope of recovery, but I’m not one to delude myself. Some people might say you’re negative, ignore them. Now is the time to cut loose anyone who isn’t loving to you. I have a friend who I thought would support me, but they’ve proven to be much more interested in getting with other girls and partying, so I cut him loose.

        I’m telling you society really doesn’t know how to deal with death. Somebody didn’t die of a bad attitude, they died because their body hates them. There are things you can do to improve quality of life, and you should investigate them. I’m on all kinds of anxiety pills and pain killers, don’t let people tell you that you’re using it some kind of a crutch. Some people might say that you’re exaggerating and you’re going to come out of it fine. It hurts when you know that’s not true. People can be dumb. Ignore them, because you are dying. Time is short, you need to find who will be there for you and who won’t. It sucks but some people who are fairweather friends won’t cut it. We probably aren’t going to live to see the next decade, so why waste our time?

        Instead concentrate on your mom (who will get around..I hope) and your family and your valuable friends. My greatest wish is to travel to see Italy and then die in peace, surrounded by family and friends. Get educated and learn your options. Some people are douches and will not help you. Life is too short to worry about them, if they won’t help, somebody will, and it might as well be you. Keep us posted on the happenings Matt.

  35. Bliss Bong says:

    I am 24 and I have just been diagnosed with a serious illness, there is a chance of recovery, but many people have died from my condition. I am afraid of dying, and I am reading this to prepare myself. I written my will. I feel so old sometimes, I wish I had traveled more. If I recover I will. I used to take things like walking to the store for granted. Thanks for writing this.

  36. matt says:

    thank you everyone for the support it really i am actually going for all sorts of hormone testing chemicals the only hormone they were able to really stabilize in my body with steroids im not as tired as i used to be all the time i ve shown improvement ive been getting hyperbaric treatments for my brain injury its another test treatment its supposed to help improve brain function and help the brain recover i started living alot healthier life i only healthy no more snacks for the last month i ve been in the psychiatric center cause i had a metal break down from the constant stress today is my first day out they gave me a whoe bunch of percription drugs for anxiety and a mood stabilizer to help with the stress and it somewhat working i went to therapy there every day and i had so much suppressed feellings that were boiling over the first couple sessions i just cried then i started to move past things and learned to cope with them i actually have started to bond with my family on a whole new level and i ve learned who my real friends are a couple people stayed close and have been there for and i a do plan on traveling this summer and i am gunna got to marijuana education college and learn to grow my own weed and apparently jersey has already legalized it for medical purposes and there for farmes to grow in jersey so i am gunna do what i love and enjoy travel the only thing that i cant seem to get over is my legacy dying no kids after me and i wouldnt wanna get a girl pregnant just so to have a kid and then die and it will have no idea anything about me and leave the mother to raise the kid i really have found alot help with coping was religion i hope the best for all of you for you may find your peace as how i have found mine over the last month

  37. matt says:

    i feel like my time is coming soon its just this feel like your heart is dying i wana leave with n regrets but i cant seem to come up with the courage to tell someone how much i relly love them and wonder if they still love me i want the best for her but i also want her part of my life as long as im here but knowing that i am gunna go soon and
    then putting all of that ache on someone i dont know what i would do there is a letter to be give to her after i die lettng her know evrything but i just cant seem to come up with the courage to tell her i am normally very bold when it comes to girls and if i like a girl or are intrested theyll know right off the bat but i actaully love this girl we dated for ahile and weve been broken up now for quite sometime and she has already started seeing someone else so i am just gunna have to live wit the heart ache idk what to do

  38. Dorothy says:

    I have been scanning the internet to find,,wow in saying that i don’t even know what i expected to find,,i would say answers but then i am not sure of the questions to ask,,,I have been told in july that my lifemate of 15 yrs had 6 to 9 months to live, he was diagnosed with non sugical non curative esophageal cancer with mets to the liver and a few lymph nodes,,i am past the “ok this is really happening” stage,we’re into our 5th round of chemo. i just know i was reading your blog and got the feeling this person knows the answers to questions i need to ask,again i don’t know what to ask i just know i was compelled to write.your blog has helped me so much thank you.

    I could not find an email to write this

    Hi Dorothy, I am sorry I don’t get to the computer every day and it has taken me such a while to respond to you comment. My heart and prayers go out to you. I so wish I had some magic words or advice to offer that would ease your burden. If there are any such words i just do not know them. What your are going through is one of the hardest imaginable times. It is like I cabn feel your pain in your writing, it is heart breaking and understandable. Watching a loved one go through so much and having to helplessly stand by wanting so badly to help but knowthing there really there is nothing you can do. For your jpartner your mere presence is a huge comfort.
    For you my friend all I can suggest is take it one day at a time. Face down the challenges that will face you. But while dong this be kind to yourself. Our greiving/hurting begins long before a loved one may pass. You need some time for yourself.
    You need loving support turn to and lean on family members, your church, friends even those here on the blog. I am but one person but there are many that follow the blog that will support you in. Feel free to leave any messages or comments you may feel you want or need to. You are going through such a range of emotions know you are welcome here to rant, vent, cry or what ever.
    I will be getting an email off to your latter today. Please keep in mind I am not a doctor, nor a man of the clergy. I am just a man sitting in his basement in Winnipeg. I share my thoughts based on my experiences as I go through this whole process myself.
    You are in heart, thougts and prayers
    Bill

  39. jason says:

    I stumbled upon your blog via personalblogs.org. I’m not suffering any similar ordeal, but I always carry the very tangible possibility that I could. In light of positivity, at least you have some foreknowledge that your time will come eventually and that you can prepare yourself best as you can. I’ve known persons who were great people that died prematurely and at very young ages (one 17, another 33). Still, I believe faith can move mountains. So grasp that and know you’re in God’s hands now.
    Hi Jason and welcome to the blog. You are right, what better place could I be than in God’s hands. For myself that is my only prayer request. I had never heard of personalblogs.org. I went over and checked it out and there I am.
    Bill

  40. Sherilyn Prost says:

    I am dying and I am blessed to have the opportunity to know the peace and serenity of God’s love! I lay here one day flowing into the other and the pain is there but seems distant… I’m not on medication for it..but know from past experience that what I’m feeling is far better than any medication could help.

    I have experience a transition from my life as reviewing everything yet it’s almost as if it is a picture glance or highlight reel of someone else.. I do remember how stressful some of them were and the feeling they would never end but they appear instantaneous and distant. What once seemed so monumental is truly irrelevant.. and I am OK almost blissful, as though I am untethered and gliding in a surreal world…I really have to focus to come down and go eat or bathe..I praise God for another moment of peace and the love with my doggie. Only when I awaken from my own screaming do I really know that my physical body is in pain. Have any of you transition into or out of this state??

    Hi Sherilyn, welcome to my blog. I thank you for sharing your so touching and heart felt story. It is comforting to know God is with you as you make this part of our physical earthly journey.it is wonderful that you have reached and can maintain that blissful state. I am so very sorry to hear of the pain you are experiencing. For me pain is a game changer. I so admire your attitude and courage through all of this.
    I can only speak from my own experience. I seem to at times attain that state of bliss but lacking your strength and courage I often loose it when the heavier pain comes on. I seem to be dragged mentally back into the reality of my body at the time. That pain is a game changer for me.
    I too am having flashbacks, memories of times and events in the past just seem to pop into my head. Some like you of how I over reacted making mountains out of mole hills. I caused myself so much needless stress. I have many “forgotten” memories coming from deep inside. Like you I see the world and life differently. Now I see there were times I see differently now. When I now rehash certain times it is more with feeling of empathy for the feelings of others my actions affected.
    I find myself seeking outside distractions in dealing with these times to temporarily refocus, distract my thinking.
    I call these “down” times my episodes. Once I get past them I can more easily refocus. I am not sure if I reach the blissful state you speak of, more a state of peace and contentment.
    I thank you for sharing and do hope you will continue to share with us going forward.
    Bill

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: