Topic: My best friend, my husband

On July 3 2007 I lost my best friend, my husband. It still feels like he's away somewhere and is coming home soon. I still expect him to call me on my cell phone to ask where I am and when I'm coming home. I miss him so very much. We had so much yet to do.
On Nov.13 we were diagnosed with this horrendous disease and given 1 year to live. We were inoperable at this stage. We went home and as my daughter Michelle informed this post about how we started him on all organic produce, no dairy, no meat and all different supplements as well as Taheebo Tea. We were doing so well that the afternoon before his placement of a port a cath we went for our appt. with our oncologist. He was so amazed at well my husband looked and felt and how good his blood works were that he said it would be a sin to start him on chemo. The oncologist wanted a surgical second opinion.
So off we went to see a LIVER SPECIALIST and HEAD OF SURGERY at TORONTO GENERAL HOSPITAL good old DR BRICE TAYLOR and his team of worshippers.
We were tested and informed that we were now a good candidate for surgery. They started by placing a external drain to see if everything was working on the other side of his bile duct and his liver. Infection time- 10 days in hospital. Then the Dr. telling us that he would be operating on May 1 2007. The LIVER SPECIALIST told us that 3/4 of his liver that was ATROPHIED ( meaning it was a dead liver) would be removed and the good bile duct and portal vein would be reconnected to his bowel and he would get another 5 years to live. My husband was so excited.
On May 1 2007 my husband walked into the hospital on his own power. He was still talking, walking, eating and still running his own business.
When the surgeon came out within an hour of taking my husband into surgery I knew something was wrong.
Dr. Taylor the LIVER SPECIALIST informed me that my husband had CIRROSIS of the liver (meaning it was a living liver with scar tissue) and another tumour under the first one. He also informed me that if they would have cut into a cirroded liver he would have bled to death, so they just closed him up.
After 12 days in hospital, where my husband DID NOT EAT or move around very much and was delusional, they told me he could go home and live a life of quality.
We left the hospital in a wheelchair, with my husbands stomach completely bloated with fluid and his ankles twice their size.
QUALITY OF LIFE- my husband slowly deteriated in front of our eyes. We tried feeding him baby food and shakes to try to keep up his strength. He never again asked my daughter how business was or barely spoke in a manner that we could fully understand.
We had to take him to the hospital once again because he had difficulty breathing. Here they drained his belly and kept him monitored for a week and when I questioned his inability to speak they did a brain ct to see if he had a tumour. It came back clear. So they sent me home to let him die.
We continued to try everything in our power to bring him back eg: chinese herbalist, naturapathic Dr. with 3 hr intravenous remedies. It was all too much for him. We were given 3 separate death dates as his body started to give up, but he kept fighting until the early morning of July 3.
My best friend was a 6'4" tall strong healthy 230 lb. man of incredible stature. He was a funny, warm, loving man.
In a split second on Nov. 13 our lives changed.
ON JULY 3 THE LOVE OF MY LIFE PASSED AWAY AT A MERE 100 lbs. He basically starved to death and no medical personal would help us.
He passed away at home with my daughter, granddaughter and myself with him.
To end this, if you have things you want to do with your loved one DO IT TODAY, DON'T WAIT, BECAUSE AS I SAID BEFORE IT TAKES A SPLIT SECOND FOR YOUR LIFE TO CHANGE. HUG THEM, KISS THEM, HOLD THEM AND ALWAYS LET THEM KNOW HOW SPECIAL THEY ARE TO YOU.

Re: My best friend, my husband

I am so SO sorry that you have lost your man, and so SO sorry that you all had to suffer so much in the process. It made me very very sad to read all this, as I remember when you first came to this site, and how positive you and your family were.
Much love to you all, and huge HUGE hugs, all the way from England.

Re: My best friend, my husband

To the Mack Family- it is so heart wrenching to hear another member has lost the battle and so sorry to hear your experience with the medical community was so horrible.  My heart goes out to you and I want to thank you for being part of the CC site and sharing your story.  Hold on to your memories and know how important your support was to your loved one.
Patrice

Re: My best friend, my husband

I am so sorry for your loss.  Reading your story was so similar to Sam's - we had so much hope.  I could not believe after about an hour into the surgery when the doctor came out and told us just about the same thing that you heard.  They wanted permission to perform radio frequency ablation which I consented to knowing that it was only to buy him some time and it did - about 20 more months.  In the end I also watched a beautiful body deteriorate before my eyes and he literally starved to death.
It will be one year this Friday, August 10th.  This journey you are about to travel is very hard.  Please e-mail me if I can help you in any way.  I can recommend some very good books and I will also cry with you.  Please know that I understand your pain.  May God give you peace and strength; I don't know what I would do if I didn't have Faith that I will live through this and I will see Sam again.  God Bless
Betty Johnson

Re: My best friend, my husband

Dear Macks,
  I am unbelievably sorry for your loss and ordeal. I have been worried that something was wrong as we had not heard from you in such a long time. This is a horrible disease and it is so hard to understand why more people are not able to be helped. It really does seem like it is pure luck as far as your treatment is concerned and your outcome. I'm sorry that you had such a bad experience with the medical community and I guess I am grateful that we seem to have been very lucky to have found DRs. and a facility that have really helped my husband. It could have gone much differently at any time though just as your husband did and I am grateful for every minute and day he is with us. Please know that our hearts and prayers are with you and your family. We will all take your advice and live every day to te fullest! I pray that you will find peace and comfort in time. God Bless. Mary

Re: My best friend, my husband

Dear Macks,
I am so so very sorry and my heart goes out to you in your time of grief. I know words cannot express how devastated you are, so please know you have our sympathy and love and try to hang in there. Your husband was a beautiful man and all who knew him were blessed.
Peace to you and your loved ones,
Joyce

Re: My best friend, my husband

Hya all I too am here crying with grief and rage as I have read and also now reading your story. I feel so much of your pain and loss.
How do these things happen so quickly, with all of our worldly knowledge.
Your experience of cc is so much like ours but we were given no hope from the first day of pain that Alan had. Misdiagnosis by our own doctor, sent home from a dyspepsia clinic just 48 hours before I took him myself as an emergency to the hospital etc. etc.
I feel now that having listened to Alan one thing he said was, when I am gone tell everyone you meet my story and to do something different at least once a year if not every day. I am happy and rich beyond belief. (meaning his friends and family)
I hope you hold on and keep safe your precious memories, these will sustain you during this terrible time and for ever and ever love and light alans mom

U.K.Member

Re: My best friend, my husband

Dear Mack Family,   My sincere condolence to you all.  I am so sorry for your loss. 
God Bless you all !   
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: My best friend, my husband

I feel your pain.  I just lost my best friend, fishing buddy, ex husband to bile duct cancer just over a week ago.  I took care of him for the past 4 months.  His health went down so fast after 5 chemo treatments.  Our son and i had to put him in hospice and 3 days later, he died.  We are still in shock.  Never in my life have i ever seen such an aggressive cancer.  It's horrible.  My heart goes out to you and your family.
Stephie1965@hotmail.com

Re: My best friend, my husband

I'd like to Thank everyone for their deep condolences and my go back to everyone that has also lost a loved one.
It will be 7 months Feb. 3, 08 that I lost my love, my life. It feels so very empty and lonely without him. It seems like everyone just thinks our lives go back to normal and that I should be fine. I'm tired of telling everyone that I am fine, I"M NOT FINE. I feel so lost and angry at the world. I'm afraid of letting people know how sad I feel. I need him back in my life. Frank was such a good man and my hand of support for all my daily things. I still reach for the phone when I have a bad day or if something good or funny happens. We use to talk on the phone as least 4-6 times a day.
I miss his voice, I miss his strong hands, I miss his laughter and his smile.
Am I not healing fast enough or does everyone feel this way.

Re: My best friend, my husband

I could write a book about how much I agree with you, how the pain and grief don't go away and everyone just goes on with their lives as if your loved one never existed. I'm approaching the 1 year anniversary of my mother's death and I'm definitely NOT okay, but no one wants to know about it. It helps to talk to someone who has gone through a similar experience - but even then, they may handle everything differently.  I'm still angry in my grief and when well-meaning people try to console me, I automatically figure out if they've had an important person in their lives die. If you haven't been through this PERSONALLY, I want to say, please be quiet about it, as no one can understand the depth of feeling. I guess you could say the same to ME, though - I haven't lost a spouse but a mother, and it seems the spouse loss leaves the most traumatic and long-lasting grief in most cases.

Anyway, my heart goes out to you-- everyone grieves in their own way and if it takes you 15 years, then that's normal for YOU.  If a support group would help you, then you should do it (I couldn't stand it myself) - or any type of counseling or just a good friend who will listen and not say all the dumb things people say. Or antidepressants. Or meditation, biofeedback, etc. Some people just don't "bounce back" from a lifetime of loving someone, and if that's crazy, well then I guess I'm nuts. The worst is when people say "She wouldn't have wanted you to grieve for her like this." Heck, yeah, my mother would hope that I would grieve at least a bit! And since when did I ever do what she wanted me to do, anyway?

End of rant! Sorry you're hurting so

Joyce

12 (edited by Sara Sun, 20 Jan 2008 21:41:34)

Re: My best friend, my husband

You know, my sister passed away from a car accident the day before my 17th birthday.  I spent my senior year of high school in a complete daze, and left for college right after the 1-year anniversary of my sister's death.  I struggled greatly during my freshman year in college, and towards the end I finally started seeing a counselor.  I had mentioned during counseling how hard of a time I had been having with my undergraduate advisor, who basically disregarded me as being female and stupid rather than listening to what I was trying to tell him about my grief.  My counselor finally called my undergraduate advisor, and tried to explain to him the grieving process.  The reality was that the cold man was in complete shock and disbelief that I was still grieving almost 2 years after my sister had passed away.  He actually told my counselor that I was milking the death, and I should have been over it by 6-12 months.  ????  Seriously, there are freakin' idiots out there that just don't understand how difficult it is to lose someone important to you - how the loss shakes you to your core and can completely dibilitate you.  All I can say is that these people are completely unfeeling individuals, or they are lucky individuals that have never lost anyone of significance in their lives.  I always pray that it's the latter.

At the end of it all, it took me a little over 2 years, and a lot of therapy, to walk through the grieving process after my sister passed.  It took me about 1.5 years, and a bunch more therapy, after losing my friend, Kelly, to cholangio.  It's a tough road, and it cannot be rushed.  I don't know how long it will take you to start laughing when you remember your dear husband, (or your dear mother, jmoneypenny) rather than break down in tears.  But the day is out there somewhere, and you will get there.  Hang in there and know that so many in this community are walking the same road and are here for you.  I'm so happy that you stopped back by...

30-something caregiver

Re: My best friend, my husband

Dear Mack Family - I read your most recent post and felt the need to respond because your feelings are almost identical to mine.  It will be 11 months on February 5 that I lost the love of my life, my best friend, my precious husband of 40 years to cc.  He, too, was my world and I worry because instead of feeling better, I'm feeling worse.  It is getting so much harder to live without him. I don't know if I was still numb, or in denial these past 10 months, but I feel the loss so much more now.  I, too, have a hard time with people who don't understand how I'm feeling.  I, too, am tired of saying "I'm fine," because I know that's what they want to hear.  They don't want to hear the truth--I'm not fine, I still cry every night and my life feels like it's falling apart.  I'm so lonely.  I miss him so much that it's a physical hurt.  Like you, I want him back.  I don't want to do this anymore.  I need him here.   He held me together, he loved me like no one else ever will, he made me feel beautiful and gave me the confidence to do things I never thought I could, he was my cheerleader, he was who I turned to when I felt alone, or sad, or happy, or just needed someone to talk to.  He understood me like no one else and accepted me unconditionally.  We loved spending time together and always looked forward to being with each other.  We, too, called each other at least 4-5 times a day--on the way to work, during work, on the way home from work.  Sometimes it was just to hear each others voices and say I love you.   We loved raising our kids together and adored our grandchildren.  We talked about growing old together.   We would talk about how we couldn't imagine a life without each other.  How do you get over 40 years and losing a person that was such a part of you?  No one understands and it seems they want to forget he even existed.  I don't think they're unkind or unfeeling....they just don't understand the depth of our loss.  Everything has changed.  Our family will never be the same--we come together but it feels so sad and so strange not to have him with us.   He was the hub of our family.  After 10 months, I still find myself saying out loud, over and over, "I can't believe you're gone, I can't believe you're not here."  I keep reading and hearing that it will get easier with time, but for some it must take a lot longer.  I feel torn because I don't want to feel the pain anymore and I want it to stop, yet I feel sad thinking that one day it won't hurt so much.  I know that sounds strange.  Like Betty Johnson, I know that we will one day be together again and it does bring comfort.  But, selfishly I guess, I want him in my world NOW, since I don't know a world without him.  I know and I'm sorry that this hasn't helped you much.  But I hope it makes you feel better knowing that it's normal and okay to feel the grief for as long as you want, and that others are going through it, too.  I pray for peace and understanding for us all.

Love and prayers,

Juanita

Re: My best friend, my husband

Hi,

My heart goes out to you in sympathy and understanding of your pain.  I lost my Dear Dad on January 13th of 2007 and the pain never does go away. It changes, but it is always there... a scar on your heart reminding you of what you had and what you lost.  My Dad was 69; my parents were married for 44 years and knew each other for 50.  So much of how you feel is also how my mother feels and experiencing that first hand, I can empathize with your pain.

The world can be uncaring. I have intentionally withdrawn from individuals who are cold to our situation and have grativated to those who show kindness and support.  Unfortunately those are few and far between.  Death is scary. Although we live in a "modern" age, people are afraid to speak of death.  This fear becomes even more exaccerbated if the illness is rare or aggressive. I believe that there are still those who feel that if they ignore it, they or their family members will not be touched. Whether conscious or subconscious, that self preservation that exists when you have not gone through a loss that depletes you of self, and has you live for another and their survival, well... that state of being is not conducive to genuine care.

I do hope that you can find peace of mind and heart. For me, it has come in small doses only when I find myself focusing on my Dad's life and not on his leaving. I have also been trying to do things, random acts of kindness, donations to charities, volunteering, in honour of my Dad... sort of spreading good in his memory and that has helped me tremendously.

My thoughts and prayers are with you,
Missing U

Re: My best friend, my husband

Juanita, My husband best friend passed on January 18, 2008.  The pain for me is so fresh. Your story is exactly how I feel.  We would have been married for 36 years on January 22.  I can't see myself a year from now still without him but I must.  Thank you for being so honest about how you feel. It helps to know I'm not alone in my feelings.
Missing U, Thank you for the advise about focusing on my husband's life and not of his leaving and trying to do things in honour of his life. I don't want his life to be in vain. I want everyone to know how this dreaded disease doesn't continue to control my husband's and my life. I will grieve and be depressed for along time but I will not give in mentally to the disease that took my husband from me. I trust God will bring me thru this. Cathy