Hello, new here

mozzer
mozzer Member Posts: 5
edited March 2014 in Colorectal Cancer #1
Hi I am not sure if I am in the right place to post this. I have never used a forum like this really. But here goes anyay...

I have just spent 16 months taking care of my 44 year old husband who was suffering from colorectal carcinoma. As you may have noticed, I wrote ''was'' . Sadly he just passed away and I am really not sure where I go from here.

I am left with three children, one is 18 months. He was 3 months when we found out so you can imagine the shock. My husband was given ''weeks'' to live back in feb 2003, yet defied them all by surviving as long as he did - although that's no real comfort.

He had to live with knowing that he had no chance of surgery whatsoever and that chemotherapy was unlikely to have any significant effect. However, he was put on seven courses of Capecitabine (Xeloda), which I think may have helped although the side effects were very depleting on him and lasted weeks and weeks, even though he was told they would wane after about three weeks.

Anyhow, I guess there is a slight positive here in that yes he did live way longer than expected and that can only be put down to his strong will to live and desire to 'carry on' .

Even a week before he died, he was still driving...

I must also say that aromatherapy seemed to have been hugely beneficial to him - physically, spiritually and mentally and this was the only 'complementary therapy' he considered.

Thanks all for reading this, I just needed to off-load it somewhere.

Good luck to everyone else suffering this atrocious disease, I pray that one day soon we will have it licked once and for all - nobody should suffer like this.

If I can help anyone in any way, I'd be glad to and if anyone can point me in the direction of support for carers, I'd be grateful. Thanks .

Comments

  • jana11
    jana11 Member Posts: 705
    #2
    Hi.. all I can tell you is how incredibly sorry I am for your loss. Take pleasure in your children. Your husband lives through you and your family.

    I personally am a cancer victim. I feel horrible for my husband who remains a great strength for me. You husband would be so proud of you for coming here for help!! I live in Houston and know there are several support groups for caregivers locally. Ask a social worker at the hospital if they know of any groups, or other caregivers who have suffered loss and start a group. Talk to your husbands oncologist/nurses and find out if they know of others nearby. I think human touch is so important during times of grief. I also believe there are other discussion boards at this site, but you are welcome here anytime.

    My heart goes out to you. Keep us posted. love, jana
  • Fitlisa
    Fitlisa Member Posts: 99
    #3
    I am so terribly sorry for your loss. I can only try to understand your grief. Take comfort in the knowledge that you were there for your husband when, I do know this, he would have needed you more than at any other time in his life.

    I am a survivor, not a caregiver but I realize more and more each day the profound effect this beast has on those of us surviving it as well as those who care for us.

    My thoughts are with you and your family,

    Lisa
  • jsabol
    jsabol Member Posts: 1,145 Member
    #4
    I am also so sorry for your loss. What a journey this disease takes us on. Wishing you comfort and strength in the time ahead. Judy
  • mopar
    mopar Member Posts: 1,972 Member
    #5
    Welcome to this site. But I am sorry that such a terrible thing brings you here. But you have definitely come to the right place. I am an ovarian cancer survivor but now a caregiver to my mother who has colon cancer which has spread to the liver and lungs. We have a long road ahead of us, but I am hopeful and still have a strong faith. I encourage you to keep in touch for support here. And as Jana recommended, seek out a local support group. Other than that, please check out the Chat Room on this site. It's very informal, but VERY helpful. I will pray for you and your children. Your husband definitely lives on in all of you. Talk about him to your children. Especially the youngest ones so they will never forget. Keep photos around, and don't be afraid to talk about him. They will see your love for him lives on and he will always hold a special place in their hearts. God Bless you and talk to you soon I hope!
    Monika
  • ipetrou
    ipetrou Member Posts: 33
    #6
    so sorry. check out the wellness community - i'm not sure where you live but maybe they have something local. http://www.thewellnesscommunity.org/default.asp
    you should also see if the hospital through which your husband was treated has social workers for you to speak with and ask his doctor for support groups. best to you and your children.
  • mozzer
    mozzer Member Posts: 5
    #7
    ipetrou said:

    so sorry. check out the wellness community - i'm not sure where you live but maybe they have something local. http://www.thewellnesscommunity.org/default.asp
    you should also see if the hospital through which your husband was treated has social workers for you to speak with and ask his doctor for support groups. best to you and your children.

    Hi again. Thanks so much for your kind replies. I have only just figured out how to reply! I'm still really stunned and can't grasp the enormity of the situation. But i don't wnt to dwell on it as you guys are in a far worse situation that me.
    I hope you all take care, I'll check out the info you have already put to me and keep looking for more :-). If I can help any of you, don't hesitate.
    Take care all and god bless x
  • Unknown
    Unknown
    #8
    Welcome to this site although I too, like so many others, am so sorry for the circumstances that led you to us. But glad you found us. I am caregiver to my husband Bert who was diagnosed one year ago this month at stage III. I cannot even imagine the pain and sorrow you must be going through right now and I greatly admire your strength and courage for wanting to help others. I pray each and every day that my husband and many others survive this demon that has been unleashed, and so far, so good for many of us.

    There are some support groups on the internet for widows and widowers of cancer victims. I recently read of one in a cancer newsletter that I receive. But believe me when I say that I think I speak for the group that you are more than welcome here and having dealt with this disease hands on for a long time yourself as caregiver to your husband, any insight, assistance, words of comfort that you can provide here will be greatly appreciated.

    I wish for you that the memories of all the good times that you spent with your husband will see you through the difficult times ahead and every day when you look at your children, know that he is there with you...in them, and in his spirit that surrounds you all with his love.

    Many big hugs,
    Monika
  • allsmiles
    allsmiles Member Posts: 25
    #9
    Dear Mozzer,
    I can't tell you how I cried when I read your message. My husband is 47 and has had a recurrence of rectal cancer while on chemo. We went to Duke Univ and were told that we could try the new chemo drugs and he could undergo a total pelvic exeneration. He has opted not to do either as he felt that for his aggressive cancer chemo is not the answer. The surgery would be so major he is not sure he would survive. We have two small boys ages 8 and 10. This has been a year long battle with chemo/radiation, surgery and follow-up chemo. He has not tolerated any of the above treatments very well and has gone from a vibrant 175 pound man to a l24 pound man. The tumor is still contained in the pelvic cavity but causing problems (he just had a colon by-pass because he couldn't eat).
    All we want is a chance to try an alternative therapy but everyday I wonder if he will be able to take more. I know you loved your husband and my heart grieves for your loss. I realize every day is a struggle for my love as the pain increases and the energy level decreases.
    Thanks for letting me share my situation. I am grateful however that I can take care of him and he is surrounded by his family.
    Grace
  • Unknown
    Unknown
    #10
    allsmiles said:

    Dear Mozzer,
    I can't tell you how I cried when I read your message. My husband is 47 and has had a recurrence of rectal cancer while on chemo. We went to Duke Univ and were told that we could try the new chemo drugs and he could undergo a total pelvic exeneration. He has opted not to do either as he felt that for his aggressive cancer chemo is not the answer. The surgery would be so major he is not sure he would survive. We have two small boys ages 8 and 10. This has been a year long battle with chemo/radiation, surgery and follow-up chemo. He has not tolerated any of the above treatments very well and has gone from a vibrant 175 pound man to a l24 pound man. The tumor is still contained in the pelvic cavity but causing problems (he just had a colon by-pass because he couldn't eat).
    All we want is a chance to try an alternative therapy but everyday I wonder if he will be able to take more. I know you loved your husband and my heart grieves for your loss. I realize every day is a struggle for my love as the pain increases and the energy level decreases.
    Thanks for letting me share my situation. I am grateful however that I can take care of him and he is surrounded by his family.
    Grace

    Grace, your story also touched my heart...very strongly. While my own husband is doing very, very well, there was a time when I wasn't so sure that he would and quite honestly, I was frantic. Just thinking back on those days makes me very anxious and scared...so scared and so very, very sad.

    I thank God for his blessings every single day and just wanted you to know that if you need someone to talk to, I am here.

    Monika in Los Angeles....write me if you want.

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