darla

Hi Margaret,

WOW! I thought I was reading my own post from 5 years ago. Your situation sounds so much like ours with just a few small variations. Jim had just turned 62 and we never even got to the point of hospice as he died the day I was setting it up. I found this site a few days after he passed and have been here ever since. Other than that, your post could have been mine. Our journey was also a short 2 months from active and healthy to gone and I felt much like you and had many of the same questions. I also felt the need to go through all the medical records, but I must tell you that it was very hard and brought back so much and more of what we went through that I don’t think I ever got through the whole thing. The pages are all still sitting on the shelves in the closet. I still try to read through some of it from time to time.

I can tell you that you have found the right place to be. I learned so much and got so much comfort from all the wonderful loving, caring people on this site and hopefully have also helped a few along the way. I’m hoping you will stay with us as I’m sure you will benefit from being here. Here we have all been there and many are dealing with this disease now. We all understand and we all care more than anyone else who has not experienced anything even close to this ever could.

Going through something this traumatic changes you and is a lot to handle, but although you could never tell me back then that I would be OK, I can tell you this. You will survive. Your life will never be the same, but you will be OK. It took me a long time to get to this point and I still have days I wake up wondering if this all really happened and how I have survived, but it is true that we are never given more than we can handle and that we are stronger than we ever thought we could be.

It takes time, and these are early days for you, but as time goes on try to remember all the good things about your life together and although the rest never really goes away, it will fade some and you will be able to take some comfort in remembering the life you once had.

Just take it one day at a time. There will be a whole lot of emotional ups & downs and many set backs, but just keep on taking it as it comes, even if it is just one minute at a time.

Know that I am thinking of you and hoping you are doing OK. Take care and keep coming back.

Lots of Love & Hugs,

Darla

Thinking of you and dad.

Hi Chuck (Dukenukem) love that.

At first I hesitated to reply to this post as my husband passed away 5 years ago from this disease and you don’t need to hear that. The good news is that I have seen so many advances in the treatment of CC in the past 5 years that I am hoping for you to do well.

My situation is so much like yours. He was 62 and I have two sons and a daughter-in-law, but also no grandchildren. In his case it just was found way too late and he never even had any treatment options at that point. He died less than 2 months after his first time in ER when they had no idea what was going on. I guess the good news is he didn’t suffer long, but that is no consolation. When I start feeling sorry for myself and saying why me? Why us? I try to tell myself to snap out of it and think about those who have it worse than me. Doesn’t always work, but I do try.

I totally agree with you that it is not always about me and hopefully I can do some good here and help someone else. I’m sure you will too, but there are days that it needs to be all about you, too.

Unfortunately, I have no answers for you as to treatments or hospice as we never even got that far.

Just wanted to let you know I understand your feelings and hope for the best for you and your family.

You have come to the right place as there are a lot of caring people here who are more than willing to listen and try to help in any way they can.

Love & Hugs,
Darla

I just put Burzynski into search and got several postings. It confirmed what I was recalling. They don’t sound good. As Percy & Lainy have said, buyer beware.

Hi Linda,

That is good news. Glad to hear it. Keep thinking outside the box. Never hurts and as you have proven, sometimes it can help. Hope things continue to improve and we see more posts like this. Take care.

Love & Hugs,
Darla

Dear Desiree,

I am so glad that you have a friend to go with you to Paris in January for help & support. Hopefully once you are back and have her things around you it will be of some comfort to you. I have a close friend who lost her husband 3 months after Jim passed away. We are always there to help and support each other. I hear your pain and know & understand it. Stay strong, take care and keep coming here and sharing your feelings. It really does help.

Love & Hugs,
Darla

Hi Janet,

Thanks for sharing your story with us. Happy to hear things are going well for you concerning your illness. You sound like you have a great attitude and I’m glad you found this board although sorry you have a need for it. So glad you were able to meet some of our members in person. You won’t find a more caring understand bunch anywhere. Glad you are here. I think you already know that you will get a lot of, kindness, understanding and support here. I also think you will be a great help to others. Welcome aboard.

Love & Hugs,
Darla

I too am glad you are no longer considering CTCA. I held back at first, but now that Kris put it out there. I too know of no one here who has gone there and have not heard anything good about them. They are for profit and I have been told from people who have checked them out that they don’t take anyone whose insurance doesn’t cover or can’t afford to pay. They also like to take cases that will make their statistics look good. I do not know any of this from personal experience, but from others who have.

You are in good hands with our dear Lainy. I do hope you two can get together. Since your brother lives near by and the hospitals and doctors in that area are highly recommended I’m thinking it is a good choice.

Take care and best of luck to you on your journey.

Love & Hugs,
Darla