Knowing that the end is near must be quite scary, as they say, "ignorance is bliss." Yet, you do know and the thing is that you aren't in pain right now, so if I was you, I would live it up. Nothing is off limits (I am not suggesting anything illegal), but really why deprive yourself, have an insanely amazing piece of cake, buy that bottle of wine you always thought was too expensive and drink it from the bottle, throw an "I'm dying party" I mean if your friends can't seem to pull themselves together-lighten the mood and force them to come over, I know I am being irreverent, but I wouldn't want to die to a slow death march. You get what we all want-to know we died doing everything that we put on a bucket list-however most of us make a list and than make excuses about how things are too expensive, how we don't have enough time, blah, blah. Do the things you always wanted and then when it is time to go, I hope you leave this world with a huge grin on your face.

Hugs-
CK

Thanks Ckarma for you words of wisdom. Knowing about when is something I would rather not know as it feels like a dark cloud hoovering overhead, so to me it's more of a curse. Having a party as you said only lasts till the hangover sets in as I've been there on that one. I've done everything on my RL bucket list and there is nothing else I want to do or accomplish. I hope that someone who shares this curse with me will have some insight and suggestions. But I do appreciate your input and suggestions very much. My only hope is to be strong and leave with dignity and to have set an example for others as to how to leave this world.

Hello Fredflies. I'm so sorry about your diagnosis. My fiancee had colon cancer for 4 years. He passed away almost 2 years ago.
If I can offer you any support, answer any questions, pray with you, or just listen to you, please let me know.
I know what you mean about the dark cloud hanging over your head. With my fiancee, I didn't know 'if' he was going to pass away. Every day for 4 years was ups and downs; a roller coaster I never asked to ride. When I did realize he was going to pass away, it was the most horrible feeling I've ever experienced.
He ended up in a coma and it was up to myself and his mother to decide on a 'directive' and we agreed on the 'do not resuscitate' order. The hospital kept him on pain relief until the end so that he could pass peacefully.
I understand about friends not coming by to visit. I know it's difficult and lonely. It's just because it's too heart-breaking for them.
I gathered from your posting that you're worried about being in a coma indefinitely. Is there some way you can wear a medical-alert bracelet or necklace with your medical details on it? That way if you end up in an emergency room, they'll know what is happening to you.
Email back if you'd like. My heart goes out to you. I have had a cancer scare myself and maybe my experience with my fiancee can be of some help to you. Hope to hear from you. God Bless!
Lakota

By the time we realize things it's often to late, we all take too much for granted and ignore the things that are going on around us. I realized that life was too short when I was put in a coma this last time and how much of a burden that I have become to others as the tough choices and worries are put on their shoulders and not mine. I remember feeling the most pain that I have ever had and then no pain at all for what was only a few seconds for me but it was 36 hours for those to watch and hope that my pain would subside. Being put in a coma from surgery is about 3 hrs of time taken away, but to be put in a coma for 36 hours is a lot of time to be taken away when you have a short amount left anyway. So yes coma is probably the biggest issue I have as all the other issues I have addressed and accepted by me. I have told those close to me to let me go without hesitation as I am ready, but it is still their choice to let me go when the time comes. I hate that the decision has to be made by anyone as that is something they have to live with for the rest of their days. Thanks SufferinLakota for your post and being observant of my issues, and yes you will be hearing from me. God does bless us all in so many different ways.

Hi Fredflies. I just found this post after I replied to your other message.
I think I may have a small glimpse of how you feel; When I first got fibromyalgia, I would sleep as if I were in a coma for up to 15 hours at a time. When I woke up, I'd find out that people had tried to wake me up, were yelling at me, etc. It really 'shook me' to find out that this was going on. My mother was furious at me for not waking up. I guess she thought it was a game or something, but I really had no control over it. One night I fell asleep and woke up 15 hours later wearing my pajamas. Turned out my fiancee had dressed me and put me to bed. But the fact that I had no control over these mini-comas, really gave me a lot of anxiety. They finally stopped after several months. I'm sure that's really nothing compared to losing 36 hours and knowing that your family was sitting there with you.
I'm sorry you feel like a burden to your family. I sure they don't see it like that. And you would do the same for them if they were sick, sitting at their bed side.
If you have a 'directive' saying that you don't want to be resuscitated and also giving the doctors instructions to take you off life support at a certain point, won't that eliminate the need for your family to make any decisions? I was just wondering how that works. My fiancee thought he was going to be Super Man and live forever, so he never made a will or signed any papers with a directive, which left the decision up to me. I'm still not totally comfortable with the decision I made and I am kind of angry that he never thought ahead to fill out those papers. I just wondered if that might take any decision-making off of your family.
I hope your pain is minimal today. Talk soon.
Lakota :)

To what CKarma had said reminds me of a quote: “When you were born you were crying and everyone else was smiling. Live your life so at the end, your're the one who is smiling and everyone else is crying.”
~Ralph Waldo Emerson~

Fredflies...Non Hogdkins Lymphoma group is quite active...It is not the same disease but we are good at compassion and support, several people are also going thru thu 5 stages of grief. I would try there for more people to talk to! Good luck!

Thanks Rascall for the tip. I'm to the point that I can't search anymore. My last days here I need to spend searching for happy times and being with happy thoughts and being with the famly. I've been selfish enough thinking of my problems and how to cope that my family needs that spare time that I have to spend with them. For whom ever reads this take care and thanks for the support...I'll see you on the other side.

I will say a prayer that you find peace and comfort.

hello

i am so sorry that u have to suffer alone and worry about the family life goes on and all the impact u have had on lives whilst u have been here is a legacy of love and happiness
this time last year i lost my beloved sis in law to the dreaded cancer right up to the end she was more worried about all of us than herself

a year on i still feel the loss but can see how she has impacted on the rest of us her daughter is very much like her in the younger days the grandbabies have uncanny traits that are hers and she is never far from my thoughts
im still sad but know that i will see her again when its my turn and to be honest its a relief to know that she is no longer suffering not that i could say that for a long time every extra day was precious and one i wouldnt have missed no matter what untill she was taken b
so my thoughts and heart go out to u and i know that no matter what your family will be fine eventually to continue is hard but it does get easier
so godbless
love always D

domestic I don't feel I have suffered alone as family and friends watch out for me and pray constantly, so I know they suffer as well. I have read countless stories like yours of the ones left behind, and it saddens me to no end that they are the ones who suffer as well. I say that only because I will be in a better place soon and they will be here alone after I'm gone. I have made amends with God as that is all I can do, I have taken his hand and he is leading me down the path that has no signs. I trust I will arrive at my destination and I will be fine. I feel blessed that I was spared the agony of surgeries and treatments, I so feel the pain of those who have. My pain is very severe at times and when it gets to a nonrelinquishing point I feel the pain of those who suffer the most and that makes me want to fight for them and take on their pain so they can suffer less. I wish I could do that. I wish for answers for them, I wish their pain onto me, I wish I could do more for those who are at their side. My prayers are with you all as your paryers are with me. Take Care and God bless those around us.

It is because of SufferinLakota that I post this as she has supported me and we have corresponded ever since her first posting here. I was hesitant and I still am. She said I should Pay It Forward.

So here is what I can pay: I had a nurse friend tell me I should find an herb that would help with my pain as the prescribed pain killers and patches didn't work well at times and was overkill at other times. I searched and was lead from one herb to another. One herb all of a sudden popped up and I was obsessed with finding out more about it. The more I read the more I knew it was the herb for me.

As I have posted before I was about on my last leg sort of speak, I was dying and there was nothing anyone could do. No surgery, medicine, or radiation was going to help. I discovered that people and there illnesses are unique in my search for an answer to my situation. Why some can tolerate one thing while others can't, made me search and read between the lines in my research for myself. Case studies and clinical trial studies caught most of my attention. I dissected the results and sorted things out. I learned how those studies were conducted and the criteria for them as well. I took key words and researched those as well. I spent countless hours looking in the right place after spending countless hours in the wrong place. The information is out there for us all to find, the key is not to give up hope, keep the faith and open your eyes and mind to what is in front of you. In my case I discovered a possible cure for my brain tumor.

With the help of my nurse friend and SufferinLakota I confided in them exclusively, while my family knew nothing as to what I was up to. I felt if it didn't work I had nothing to loose and by telling my family it would give them hope that could hurt them if it failed to work. As flawed as that sounds that is what I did until I finally had to tell them and the doctor what I had done. I finally told my family a few day before the office visit. If I had to do over again I would involve everyone, as each person has their own perspective on things. Having a doctor who is knowledgeable in herbs and who will guide you is essential, as I found out the hard way.

I had an appointment with the neurologist and he was going to be doing an MRI and a Cat scan to see where I was at. 2 1/2 weeks ago my daily pain of 2-3 dropped to a 0. That was going to be hard to explain to the doctor.

I started treating myself Dec 23rd, my wife’s birthday as it symbolized an on going gift to her. The first batch of herb pills came from our local well known national herb store as I was waiting for an online order shipment. I knew it would be after Christmas and I needed to get started sooner than that as my pain would soon be consuming me in a short while. The local herb in my opinion was far inferior to the online herb as it seemed to kick in and I could tell a difference.

My pain returned and as I went on the Fentanyl patches and Oxy at the same time, the herb as I found out was reacting to the medicines effectiveness. I found myself at a crossroads, take the herb and endure pain and keep the treatment going or stop the herb and let the meds work and get pain relief and start over. I chose to keep taking the 10 pills per day herb and endure the pain. What I had found was that the herb in the studies rendered effectiveness after 4-6 weeks of taking it with one exception and that was in a week’s time.

I was committed and I had faith in what I was doing. I prayed, bitched, moaned and groaned and I suffered thru the pain. I questioned the herb’s effectiveness, I wondered if I was delusional, and I wondered at times if I was having a placebo effect. I also cried on my two friends e-mail shoulders a lot. The pain began subsiding over another week’s time. The herb finally kicked in 2 1/2 weeks ago and I have been pain free ever since. The doctor said the edema was gone and the inoperable tumor had shrunk 2 percent. He asked if I had been taking anything like herbs and I told him what I have told you here. He said he had followed the clinical trial of the herb and thought it needed to be given a chance in studies. He also said it wasn't a magic pill and that it won't work for everyone. He said with no edema and the fact the tumor may have shrunk that I should be ok.

My friends and family thought I was brave to have gone through with what I believed in. I was desperate and desperate people do unconventional things at times. If I can do this with two friends and God's help you can do it as well. The herb I am referring to is called H-15 or Boswellia Serrata. The amount of ingredient I found that works for me is 10 pills per day and that is based on the ingredients of the pill itself. I will take this dosage until the doctor says not to or if it proves not to be helping.

With everything we take there are risks, it is those risks that we choose to take or ignore. I am only sharing this as and aid for encouragement for someone to search out their own answers. As with everything, something’s work for some, while others it doesn’t. I do think people and doctors underestimate the power of certain herbs. I am reminded of the many people who suffered due to Polio when there was an easy treatment and cure available which was under researched and funded. A massive dose of vitamin C was all that was needed. “But worse than that is the shield of silence obscuring a humble small town physician who cured polio victims in the late 1940s and early 1950s using mega-dosages of vitamin C. His name was Frederick Robert Klenner, MD.”
http://www.naturalnews.com/035696_polio_vitamin_C_history.html

What I did in retrospect in my opinion was stupid, reckless and totally unconventional to say the least. However this is what I did and I wanted to share my experience. I do not recommend treating yourself as I did, but I do recommend taking charge of your destiny and research a solution.

God bless you all and keep the faith.