December 26, 2009 at 7:32 pm #33904saracitaMember
Thanks for everyone’s messages, wow! What an outpour of love, support, and understanding. I am overwhelmed with gratitude for you all out there.
Darla-I am so sorry about your husband. I know about your story and have been reading your posts for a long time now. Thank you for the encouragement to keep going as you have done.
Teresa “Tanoland”- Hi, I hate to hear about the suffering of your sister, as well. I am so sorry for all that you and your family have been through, and still go through.
Dear Lainy, I have also been reading your posts for about a year now. You are amazing. Thank you for posting that poem for me. It is very beautiful and sad and rings true. You are right, it is a terrible feeling to try to reconfigure your life. My life was about taking care of John, and the further out I get the farther away I feel from him. He hated the way our lives changed, and I know he was ready for it to be over– yet I still long to care and fight for him. Thank you for being so present on this board and to everyone who unfortunately ends up here.
Julia “lalupes” Thank you for your message. I am very sorry for what you are going through with your sister. I wish your family the very greatest blessings.
Janet “magic” You’re right on about feeling like being trapped on a doomed bus. I have felt that I have been in a real nightmare from which I would never wake. It is awful isn’t it? I am so sorry for your husband. You and your family are surviving and that gives me hope.
Gerry “hollandg” Thank you as well for your message. I know the feeling of wanting to help, with no words to go… Thank you for being present to my pain. I do not know your story but hope to learn it. As for everyone on this forum, I wish the best for you.
Dear Teresa, I know about your son Alan, I am so sorry for you loss. Over the months that I have been on this forum, I drew many similarities between your son and John. John was very athletic, healthy, energetic. He climbed Mt. Kilimanjaro and played many sports. We always hoped that youth and strength would pull him through. During his illness, it was so painful for him to think of all that he would never do again. And terrible for us to feel his sadness as well. I have watched the struggle of John’s mom and dad, and I can see that the loss of a child to cancer is unlike anything else. I am so sorry. Thank you for helping me in my journey, as well. You, like John’s mom, must be an amazing woman to have endured so much.
Dear Pauline, Thank you for your love and support. In small ways I find myself behaving in a way John may have, or saying something I think he might have said. He had a very distinctive sense of humor, and was always incredibly sure of himself when making decisions. I find myself enacting some of these things in my life from time to time (normally I am very indecisive). I like the way that it feels when it seems John is coming out in me. I don’t know what I believe as far as spirits and life after death and all of that. My mind has been busy at work thinking about it for so long, now. I do think that we carry our loved ones on with us in our lives, through our behavior, treatment of others, and the contributions we give back.
It was great to experience his love. Our love grew greater and greater as he was sicker and sicker. My heart grew so wide, but ached so much.
Karen, thank you
Dear Joyce “jclegg” Thank you for writing to me about how you are dealing with the loss of Butch. I look forward to being where you are, where the pain has eased up at last. I wish you and your family the very best wishes for this new year.December 26, 2009 at 12:42 am #33903jcleggMember
On this Christmas Day I would like to say something comforting, and I find it difficult because it IS so tragic to lose someone so young and full of life. You have shown a remarkable understanding, far beyond your years. My Husband Butch passed away in October of 2008, and I still found this Christmas very difficult. However, I CAN say that those terrible memories have faded away somewhat, and now when I think about Butch, I think of the good times – and there were a lot of them – and I can tell you that life DOES get easier – not good, but – better than it was this last year. The pain will ease up, and your life will go on. Please come and visit us here whenever you feel lonely, and I hope that you have many friends and family around you for a support system. I don’t think I could have endured this w/o that loving support, and the help of the wonderful, caring people on this board.
Joyce C.December 25, 2009 at 2:13 pm #33902karenParticipant
This has made you wise beyond your years. The compassion that emanates from you is so moving. May the Light of Grace bless you and comfort you.December 24, 2009 at 6:53 pm #33901paulineMember
I feel your sadness and share your sense of despair. Life is so cruel and cc is such a terrible disease. John was so young and had so much to live for. None of it makes any sense. When my husband and soul mate, Anthony, died nearly 17 months ago, I felt completely traumatised and tormented by what had happened to him, by all the pain and suffering he endured. Everything you say makes complete sense to me and I can relate to it all. One thing that helps me slightly is to know that Anthony’s mental and physical suffering is over. He always said to me that he thought it would be worse for me because I would have to carry on on my own. With this terrible disease you endure so much together and you suffer together. Sometimes I just wish he was back with me, even with the illness, and that we were still together trying to get through it as best we could but I know that is selfish and I couldn’t bear to think of him suffering any more.
So what do we do without the love that filled and defined our lives? How do we deal with the emptiness and the loneliness that is so over powering? I can’t say I have any answers but I try to find some strength from Anthony’s love and from his brave and generous approach to people and to life. I try, therefore, to lead a life that makes a positive contribution. I am taking very small steps and think I fail miserably most of the time but I will keep trying. I still want Anthony to be proud of me!
You are so young and have endured so much pain, whilst having experienced a great love at the same time. I hope you have a lot of support around you from people who love you and that little by little you will begin to see a way forward that makes sense for you. John will always be with you in your heart as Anthony is with me. We can still get strength from their love and from all the memories we have of our lives together. It is wonderful to have experienced such love, even though it is so hard to cope without it.
I am thinking of you. Please come here and tell us how you are feeling. We really understand and want to help you in any way possible.
PaulineDecember 24, 2009 at 10:35 am #33900teresaMember
What an incredible journey for someone so young.
You are not alone.
Here is where you can come anytime to put any words that spill out.
My journey was much shorter than yours and John’s but very much in the same vein. My son Alan when diagnosed was helping his friends to build a climbing wall as the one at the university had been closed down. He was so fit and healthy. I peeked through the bathroom door one day when he was having a bath and saw him looking in our large mirror, I could see the shock in his face.
You and John’s parents will survive and each day will blurr into each other.
Time will have no meaning for a long long time. One day in the distant future you will become to realise that life has changed all of you forever. The pain will ease but oh so slowly.
After a very long time I decided to start a book, very simple at first.
My first thing was to copy and paste a lot of the very very special messages that people on this board had posted for Me and Alan. I too copied the poem from Lainy and was so grateful for that. Everyone on here is so magnificent in our times of grief.
Even today, 3 years on and especially as it is christmas time my heart still breakes for the loss of my son.
I weep for you and John and his parents too. all my love to you all.
Alans momDecember 24, 2009 at 2:11 am #33899hollandgMember
Words fails us when we wish to express our feelings to people we have never met and live in another part of the world.
For what its worth……..you are in our thoughts and prayers as you seek to fill the void left by the passing of John.
Look after yourself………..GerryDecember 24, 2009 at 12:05 am #33898magicParticipant
Dear Sarah,I always read Johns blog and I felt very moved and upset at the idea of a man of his age suffering so much.He retained his sharp wit but as a nurse I knew he did not have long.Everybodys circumstances differ but really you just have to take it all one day at a time but get all the help you need,medical,counselling,medication if needed.
My husband died 11months ago in his 50s and we had 3 sons,the youngest still at school.He died about 3 months after diagnosis.I thought we would all be destroyed by it,it was like being on a bus wanting to get off but not able to.I still feel suprised sometimes that we have survived this year but we have and you will too with help JanetDecember 23, 2009 at 10:26 pm #33897lalupesParticipant
I joined the family fairly recently & never knew John, but I’ve read about him & have heard him spoken of with so much love. I am so, so sorry for the pain you’ve been through, are still going through & will go through as you deal with his loss. I feel privileged to have had the opportunity to read your post & to have been allowed to do what I can to help. I wish there were more I can do – but I’m here, along with your other CC family members, & I’m thinking of you & sending all my very best wishes to you.
Please talk as much & as often as you want. We’re with you.
Julia xxDecember 23, 2009 at 8:35 pm #33896lainyParticipant
Oh, that makes me feel good, thank you Darla.December 23, 2009 at 7:35 pm #33895darlaParticipant
I copied that poem the last time you posted it and read it every morning. It does help to put things in perspective and starts my day on a more positive note. Thanks for posting it again. I hope it will be helpful to you too Sarah.
DarlaDecember 23, 2009 at 6:54 pm #33894lainyParticipant
Dearest Sarah. I can only imagine the sadness you feel but I am also imagining John watching your torment and feeling so sad about you as well. I know for sure he was amazed and grateful at how you helped him through the nightmare of a journey he traveled, but like you say he would not have had it any other way either. I always feel that a part of the grief is the emptiness of no one to tend to anymore, to sit by each day, it is a tremendous void physically and mentally. If I may suggest seeing a grief counselor I would.
Sometimes we need a little nudge. I also believe that when you are feeling better you will be more open to recognizing signs that John is around you. I am enclosing a poem that I just love and hope it will help you also. Please stay in touch with us and let us know how you are doing.
You can shed tears that he is gone,
Or you can smile because he lived,
You can close your eyes and pray that he will come back,
Or you can open your eyes and see all that he has left.
Your heart can be empty because you can’t see him
Or you can be full of the love that you shared,
You can turn your back on tomorrow and live yesterday,
Or you can be happy for tomorrow because of yesterday.
You can remember him and only that he is gone
Or you can cherish his memory and let it live on,
You can cry and close your mind, be empty and turn your back,
Or you can do what he would want:
Smile, open your eyes, love and go onDecember 23, 2009 at 5:34 pm #33893tanolandMember
Wow Sarah! That is identical to what I went through and what my sister went through. From being diagnosed to dying within a year. The suffering. I was by her side every single day and night until the end. And my family is still grieving terribly. We are a very close family and it was our first loss. She suffered throughout the entire time and she was so scared to die.
I’m so sorry you are so sad. Before my sister got sick and died…I could never relate to anyone who had lost someone they loved. Unfortunately I can now. I can physically feel your pain and I am so sad for you.
I am sad for all of us:(
TeresaDecember 23, 2009 at 5:33 pm #33892darlaParticipant
I am so sorry for the pain, sadness and suffering you are enduring, but I do know it well. After almost 45 years together I lost the love of my life, my soul mate to this disease 16 months ago. I feel like a part of me has gone with him. It changes you forever. Try to remember the good times and that he will be with you forever in your heart and those memories. Every day is a challenge, but I try to take it one day at a time. Sometimes it is one moment at a time. I don’t think any of it ever really goes away, but we just learn to live with it all and try to go on. I keep coming back here because the understanding, caring and support are amazing. I hope you will come back too. It does help and I also find that trying to help others dealing with this disease also seems to help me. It makes me feel that at least something positive is coming from all of this.
Take care of yourself now Sarah. Know that I am thinking of you as we all travel this lonely road of grieving.
Love & Hugs,
DarlaDecember 23, 2009 at 5:09 pm #3016saracitaMember
This is the first time I have posted on this part of the forum. Before, it was resource-seeking, and fight! fight! fight! It breaks my heart where I am today. I just got up from trying to nap, but started to cry instead. I think I need to do something else instead, maybe see if I can get this story out of me.
I am 24. My boyfriend died about 2 1/2 months ago. He was 30. For the previous 10 months before his death. I was at his side almost every day. He was diagnosed while we were living in France together, we were to get married in the next year or so. We were as in love as anyone can be.
After his diagnosis and return to the US, I moved in with his family in NJ. My family is in GA. It was so hard. There was so much suffering. In John’s case, there was no hope, no cure, just the understanding that each day was precious– most days were not precious as he endured so much pain, so much sadness, so much disappointment.
The treatments were a nightmare, and he hated to look at himself and the way cancer changed his appearance. He once told me that he hated being himself. How horrible. Someone that had always been so confident and even slightly arrogant for his entire life. It seems as though we spent nearly every other week in the hospital for about 10 months. Me and his mom, together, trying to help our John. Utterly, unspeakably heartbroken, at every turn. There were moments where all I could do was lay on the floor. As though life were leaving my body as well. I wonder, looking back, how could I endure so much suffering? How could he? How could his mother and father? I am sure that we had angels by our side, there was something stronger than human will walking us through that tremendous pain.
It was a cruel nightmare that lasted almost a year. I lived facing his death for so long, that his actual death felt almost like a release from the hell. For a short while. A day maybe. And then like all of you, anticipatory grief became real grief. It went from numbness to reality, to deep and dark despair. Deeper and darker than I knew was possible. During his illness there was so much panic, fear, nervousness… the treatments, the fevers, the ER, the tubes, the oxygen tank, the pain, all the physical changes, what did this mean? What could that mean? What would happen if the doctors couldn’t do this or that for him?
And then it was over.
Now I am left with so many horrendous memories, what feels like a lifetime of pain, bottled up and condensed into one nauseous, depleted body. Still, the worst part, is remembering his sadness. How horribly disappointed in what had befallen himself and his loved ones. How terribly heartbroken he was. The night he cried out to me, “I don’t want to die!” I will never, never forget it.
I feel as though my heart and soul have been so transformed by suffering, that I can’t see straight. I feel as though I dealt with so much pain before his death, that I have no more reserves to handle the loss. Is it possible to run out of your coping mechanisms? Your ability to deal? I guess that I will find out, maybe one day I will be able to answer that question myself. Today I don’t know the answer but have to just believe that it is no- just keep going.
I continue to hope for the best, knowing that this will stay with me forever. Even though it is sadness I talk of, I can honestly say that I wouldn’t have it any other way, because its all I have left that keeps him around. One day I hope that sadness turns into a state of profound remembrance, that will guide me and help me heal. It is oh so hard.
I know you all understand me, thank you for being there.
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