Topic: This evil disease

I have already posted a message tonight to " Fairydrop "Charlene as I felt her pain for her husband John's passing.  I don't go on this forum often as  my partner Mark usually hogs the computer and I would rather sit and watch soaps than spend my evening typing away, however tonight as my Mark is in hospital yet again having his 3rd and 4th stent inserted in his liver and small bowel, I find myself lonely and wanting to talk to people who understand. 

Mark and I have lived with this awful condition for 3 years now and we are growing tired of it.  We are still young and only in our 40's and have 3 children between us, (2 mine and 1 his ) and all we want is to be able to have a normal life together and enjoy the simple things in life.....share a meal together , a drink together ....be intimate together ... be a family...  If anyone out there is going to preach to me and tell me there's a god and that it will all be alright, don't bother, because I'm an atheist and if there was a god Mark wouldn't be leaving me and those who love him in the near future....

L xxx

Re: This evil disease

Lorna,

The only suggestion I have is what a  number of people have suggested to me. That is to read The Tibetan Book of Living and Dying. I can't say it will help as I have just started it.

The Tibetan culture has ingrained the understanding of death and preparation for it into its culture.  Everyone I know (some cancer survivors, others who have lost their partners) who has what I consider to be a healthy understanding and outlook on loss, grief, death etc, all say this is the book that brought them understanding, peace and acceptance.

Hope this helps.

Re: This evil disease

Lorna,

You are right, this is a cruel and unfair disease that steals even little joys, like breakfast. My mom became very weak very quickly so it was like a rug was pulled out from under her. One morning I heard her moving around in the kitchen, she was trying to cook breakfast, that's all she wanted, to cook breakfast like she had done thousands of times before and she couldn't do it, she was too weak. She didn't want to run marathons, she just wanted to be able to walk to the bathroom. It's not really that much to ask for.

People thought this disease was unfair to my mother, who was 66, but when I visited this board and read people's stories, I knew we were lucky, that she could have been taken from us much sooner. I remember when I learned Mark Clements story I got a whole different perspective, he was in his 30s and his wife was about to give birth to another child when he was diagnosed. My sister was newly pregnant when my mom was diagnosed and I remember thinking I could not fathom her having the baby and losing her husband, and my mother would not have been able to fathom it either.

I don't consider myself an atheist but I don't look to religion to explain suffering. I don't think suffering has a purpose though I do think it can inspire acts of human benevolence and betterment of the human condition. I experience this betterment every time I visit this board and I hope you get some comfort from it as well.

Patty

Re: This evil disease

Lorna,
This is a terrible, soul eating disease. It leaves pain in its wake. We all want the same things you do. And sometimes there is no answer or reason why things happen and the unfairness of it all can suck out what there is left of the good.

Sometimes I cry in the shower when I am alone and it is ok. I am 34 and I know that the odds are I will never have children, that I will not live to take care of my parents when they need me and when I realise that all those plans I made will come to nothing. I get guilty when I think that I am stealing the best years of my husbands life and possibly robbing him of the chance to have children. It is unfair and extremely tiring.

Yet, this was the hand I have been dealt. If I dwell on things too long I get so angry and bitter...usually about why did I get THIS cancer, when it seems like almost every other one has better odds. But this is my life. This is my husbands life. I cant choose my path, but he can choose his and he is right next to me. What is my hand? I dont know. But I do know that Hans, my family and I need to find a way to talk about how we feel and what is in our heads. I dont know if I have 3 months, 3 years, or 30 but I do know that I dont want to focus on statistics or the unfairness.

We all understand.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: This evil disease

Lorna,

I am so sorry that you & Mark have to live like this. This cancer is so cruel, unfair and painful to all who have had to deal with it. Living with it is so very hard. My husband passed away Sept. 2 only 7 weeks after his first symptoms. He was positively diagnoised with CC only 1 week before he passed away, so we only lived with it for that short time, however, I will have to live with it for the rest of my life.  I felt cheated, like I wish we had had more time, as it went so fast & we didn't really have time to think or do anything. Hearing stories like your's makes me wonder which is harder to deal with.  Going through everything that you &  Mark are has got to be terribly hard on all of you. Atleast in our situation, Jim & I only dealt with it for 7 weeks & now he is no longer suffering or in pain which is some comfort to me. Watching him get sicker & weaker every day was so very hard. But losing him so quickly was and is hard for me to accept.  Jim was 62 and I felt that was too young.  40's is way too young! It is so unfair!

I guess there is no right or wrong, good or bad, we just have to take it all as it comes at us & deal with it one day at a time. Try to stay strong. I will be thinking of you & wishing for the best for all of you.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.