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Hi Nancy,
What a sweet note. Thank you for posting. I’m so sorry that you and your husband are even facing this. I’m so glad for the two of you that you have your time together. I can surely understand why typing that note made you cry. It’s making me cry too.
It’s wonderful you have had your 43 years together, and met when you were kids. I can only imagine all the growing up you did together, and wonderful times, and learning how to be a couple together. My husband and I had that also, and I was so looking forward to being old together.
The two of you are blessed to have one another. Taking care of my husband was an exhausting, chaotic time, but a time that I treasure so much. It was a sacred blessing to be with him.
I know this is very hard, but I can’t help believe that your memories of now will later be reassuring because of the conversations you’ve been able to have.
Like you, I believe I’ll join God in heaven too, and the fact John is there already makes me look forward to being there.
I’m wishing you all the best, and peace and comfort for your husband. Please continue to let us know how you are doing. I send a warm embrace to you and your husband from the depths of my heart.
MargaretDear Michele,
I so admire the loving care that you are giving your husband. When I read your description of his current state, it reminded me of the weeks and days before my husband, John, 58, made his passage. Just as you described, I was scared and it felt chaotic and I was exhausted from no sleep, and a zombie, and feeling terror. I’m not sure there’s any other way to feel at such a time as this, but realize that you are giving your all to your dear beloved husband. If it’s possible to hush your fear, try to do so in order to soak up the closeness that you can have at this time with your dear husband.
I would make one suggestion if you haven’t already done it — make a quick phone video of your husband saying a few special words to you and to your children, and of you saying some special words to him. My husband and I did this as he was nearing the end and I was so glad that we did — I watch it often and will always cherish it.
Michele, the others who have posted are so right — if you want visitors kept to a minimum, do so. This is your time to be with your husband, and you will cherish it when you look back and know that you were with him on his journey without the distractions of people wanting to “visit” or “keep you company.”
You may not feel that what you are doing is adequate or enough — it is! You are at his side and loving him. Right now enjoy looking into his eyes and being with him.
I have two young children also, 16 and 13. It sounds as though you are handling things very well, so speak only encouraging words to yourself.
I am wishing you much strength and love, and know that your long-distance family is thinking of you and keeping you and your dear family close to our hearts at this time.
And yes, our rabbit seemed to know more about what was going on than we did.
Much love to you,
MargaretLinda,
I’m so sorry about your husband. My husband also maintained until the end that he would return to work. And, like you, I didn’t dispute what he said. For our situation it was the right thing to do and I wouldn’t have done differently. It would have broken my husband’s heart to think that he was losing his career. There was no reason for him to confront that, along with everything else he was having to face.
I send you heartfelt wishes for strength and comfort in the time ahead of you.
As I’ve said to others, if you think it’s right for you and your husband, a quick video made with your phone of the two of you expressing your love for one another may become a cherished item in the years to come. It has for me.
Take care, Margaret
Hi Linda,
I’m so sorry. I only recently traveled the road you are on. My husband was 58.
Other posters have given you good advice and words of friendship and comfort and I cannot add much to that other than to say that my thoughts and prayers go out to you and your husband.
If your husband is able to talk, please do make a quick video with your cell phone or iPod of the two of you saying “I love you” to one another. You will cherish having his kind words to you, and yours to him, later.
I wish I’d asked my husband what sign I could look for from him once he was gone. Questions like that I wasn’t even thinking to ask as we dealt with the practical emergencies before us, but I wish I had.
Our community is wrapping its arms around you and your husband.
MargaretMary,
Your note touches me. I lost my husband Oct. 24 and your heartfelt message reminds me so much of how I feel about John and my life without him. It’s also encouraging to hear from another widow what it might be like in a couple years. Honestly it’s hard for me to believe “it’ll get better” from people who have never traveled this path, so I appreciate that you’re sharing your experience and feelings.
Thank you and I wish you all the best on this path and in your life.Margaret
Dear Lynn, I’m so sorry. It’s beautiful that you were with him during his struggle and that you were there caring for him. I cherish the time that I had with my husband as he fought cc for two months.
Thank you for sharing with us the beautiful exchange the two of you experienced with the Fairy on your tshirt. That is a lovely moment to cherish forever and says so much about your beautiful relationship with this wonderful man.
Love and hugs to you, MargaretHi to all of you who have replied. You are all such wonderful, loving and caring people. It brings me to tears to read the messages.
Thanks to those of you who are diagnosed with cc. You are very sharing that you reach out to me. Strangely, this disease hit my husband so hard and fast, I don’t think he even actually knew the official name of it, or if he did, he hadn’t had any practice saying it, nor did I. My husband also had a very bad case of ascites — another word I don’t think he knew, nor I. I’ve only this week begun to read about it.
As I may have mentioned, I’m now trying to read these forums to figure out what happened to John (I don’t think it’s right for me to claim his battle as my own — my wonderful husband is the one who paid the ultimate price and was so courageous and brave through all of it. My challenge through this has been a different one.)
Cathy, the PTSD has been an enlightening comment — I hadn’t thought of it that way. But I think it’s absolutely true. I’m happy for your success in battling cc!
Also, Clare, I definitely don’t think your comment to get help with the medical records is patronizing. When I read the forum messages and see how much knowledge all of you have about your cc or that of your loved one, I’m just amazed and very impressed. My husband and I didn’t know any of this, and he was a very intelligent, well-read person.
Darla, Lainy and Marion thank you too. And Mary I am thinking of you with your husband’s recent diagnosis and your young sons. I’m asking God to wrap his arms around your family.
When I was so in shock trying to help my husband and not even knowing who I was or what was happening, I tried to tell myself that my hands were those of Christ’s — I just let him take over my body and use it for the loving care of my husband. Some days that was the only way I could function. I know I must sound crazy. But that’s the way it was.
One question about a common theme that I see in these posts — cc is a roller coaster. Why is that? I can honestly say that’s how it was for our family. I told my sister one day that every day brought a fresh round of chaos. Do other cancers not behave this way? Is this unique to cc?
Again, thank you for your love and caring. You are in my prayers!
Must go and help my 12-year-old who has a cold. ~
Margaret
I am a believer, and am counting on that helping me rise above this tragedy.
Like you, I also believe in little miracles sent by my husband. He was a photographer and a writer, first in the newspaper business and then in public relations, and always talked about getting the light right whenever he took a photo.
To my amazement, I’ve had some interesting and funny encounters with light since John departed this world. I think that has been his ironic and funny way of encouraging me to have faith and carry on.
Please do email me. I find it so beautiful that you have received so many visits from your husband. I’m trying to talk to my children about this. So I’d love to hear about your experience.
Thank you!
Margaret
Hi Darla,
Thank you for your reply. I didn’t expect to hear from someone so quickly, especially someone whose experience was just like ours. (Hospice was in our home for a little more than 24 hours).
I thank you for writing the reply and sharing your experience, which also brought me to tears. Perhaps I’ll request the medical records, but take my time reading them or not worry about it for years to come, or maybe never. I can see how it would be terribly painful.
I appreciate your labeling this situation “traumatic” because it does feel as though our family was hit by a bomb, and, like you, sometimes I wake up and think that surely it didn’t even happen. Yet the world keeps turning just as it was before John died, just not the same for me or him. Like you said, I know I have been changed forever.
I was so encouraged to learn that there is an organization like this, for two reasons: John’s battle with this cancer was amazingly similar to that of others, which is helping me understand what happened; and the fact there is a concerted effort to gain information about this cancer so people can fight it more effectively.
Thank you again and I do plan to keep reading the forum, and hopefully some day I can add information that will be helpful. I’m glad, for example, that there is some effort to improve the palliative care, so I may have some comments to make to that discussion.
Thank you again!
Margaret
Lainy, I have ready your comforting and helpful replies to others and have admired your generosity of spirit. In reading your reply to my post, it was overwhelming in its kindness. I appreciated the poem, which I will keep close, as it’s just what I need to hear right now and probably for a long time to come.
It brought me to tears, of course. Well, convulsive sobbing actually, as that’s still where I’m at.
The poem touched me because with John’s speedy departure and the shock that we were both in, we really didn’t get to say goodbye. It was as if we didn’t even know what was happening to us. I am only now coming to my senses, I think.
Thank you Lainy,
Margaret
