New to Group. Stage IV looking for support

You are definitely and sadly not alone in your journey.  There are many in life and many here on the forum who are Stage IV and fighting to live each day. 

Most of us are not as young as you are. My heart goes out to you, being a young mother. Being a mother myself, I remember too many nights of weeping at the thought of leaving my two boys, even though they are both adults. 

I'm in a little different situation as you are, being NED.... well, I hope. I get my scan and blood work results on the 13th.....

How do I cope? I decided early on that if I was going to die (you know its all about thinking you are going to die, when you are first diagnosed) then I was going to do my best to LIVE until I died. I decided that I would LOVE life. I live in a remote and small Nevada communtiy; not much opportunity to travel, so I found myself a wonderful little canyon and I have made it mine (in my head). I go there as much as I can because it rejuvinates me. In my humble opinion, it keeps me alive. 

I believe it is important to find something that you absolutely love and enojoy it. Of course, you have to take your age and responsibilities into perspective. I'm old, so I can up and out whenever I want. Being a young mother, no doubt working as well, you have commitmnets that you have to take into account.  But, even with that, you can find something that brings you joy. 

The bad thoughts will come, so you have to roll with them, but not for long. I made a goal to weep and worry for 10 minutes a day and then I made myself get past that by using guided meditation, meditation. 

Find what works for you personally.  

Life is about living. 

I look forward to getting to know you. 

TRU

Dear Icymoonstone.

 If you would be interested in reading my story "How I Beat Stage Four Colon Cancer" just go to my page

blessed39 and click on blog and my story will come up. I don't give medical advice, just what worked for me. God bless

blessed39

There are many survivors on this forum, and reading their stories has been very helpful to me.  I was diagnosed at stage 4 last year, and have been very lucky to have good results from the chemo I recieved with very few complications. 

It sounds like you have had good results too.  The doctors and researchers are always developing new treatments, so maybe they will find a way to cure us. 

I sympathize with you worrying about your daughter.  I have 4 children, 3 are adults, my youngest is 15 years old.  It has been hard on him, and I worry about what happens to him if I die before he graduates.  He has always been so close to me, being the baby of the family.  I have encouraged him to stay busy and enjoy his highschool years as much as he can.  It is fun for me watching him in his activities.  He loves choir and theatre.  He is growing up so fast, and will be traveling with his theater group to New  York City next month, and to Scotland this summer.  I didn't want him going to Scotland, but it is in his heart to travel the world, just as I have wanted to do throughout my life.  I don't want to hold him back, he is so full of life - I want him to enjoy everything as he would if I were not sick.   

I also enjoy time with the rest of my family, especially my grandchildren.  My granddaughter has spent the night with me this week because she has a new baby sister who gets all the attention at home.  She has really brought joy to my life!   I got really lonely being home alone all day recovering from my liver ablation the last couple of weeks.   I live in North Dakota, and we have another cold spell, so it is not very pleasant to go places when the temps fall below zero.  I am lucky to have such a sweet granddaughter who likes to spend time with me.  She wants to bake this afternoon, so I better get on that before the day is gone.

I heard the same dismal prospects as you last year - 6-18 months, maybe 3 years if you are lucky.....

My doctors now say they expect that I will live for many more years.  That is my hope and prayer - that I have MANY years of life ahead of me! 

Good luck to you in your treatments! 

Joan

Hi Icy, I was not initially diagnosed with stage four but now have mets so in my mind that's stage four. For some reason they don't change the diagnosis from the initial one. The anemai sound rough. I've also been struggling with fatigue and being cold and have pretty much kept myself at home so far this winter unless I haveto go to work. And at work I have a little heater sitting by me or I'm so cold. My onc said it's from metabolism changes. Apparently it's also why I don't lose weight. I'm about 35 pounds heavier than I should be but hardly eat and have no appetite and it doesn't make any sense. Stupid cancer, it affects so many other areas besides the original one.

Try to read what you find on the internet with a skeptical eye. Much of it is old information, dramatically written, or not even true at all. There are some really great people on here who have done their research and have good information. And much of it is pretty positive. I'm not great at doing research so I count on the people who are good at it. Other mebers on here are also a good source. It's much better to hear it from someone who has experienced something than your doctor who only draws from their pateints and likely didn't have the time to hear the whole story if they were told it and many patients dont tell them everything.

There is always hope. There are new ideas coming up all the time and people are working on it daily. I just read yesterday that the university of Calgary has just identified a protein that is responsible for metastasizing cancer cells from the original tumour. This L-plastin spreads cancer cells and they've found a molecule within it that they say can be switched off using an inhibitor peptide. They think it will be useful in preventing the spread of a number of cancers including colon.

I agree with you about the stories and movies where someone has cancer. I think they see it as the ultimate sad story and so its easy to use. I get all 'oh yeah, of course they have cancer' in my head when I see this. I wish they could come up with something new to use. I remember when my mom was diagnosed with pancreatic cancer. A couple of nights later I was reading a Steven King book and that exact cancer was mentioned and the character was thinking 'well, at least that's a quick one'. It was like a punch in the gut. I'd been trying to tell myself that my mom was going to beat it. 

And, yeah, I get annoyed with all the breats cancer stuff. Every cancer needs to be represented but I get sick of the pink crap. Sure, boobs are sexier than bums when it comes to cancer, but there are plenty of other cancers out there! I will sometimes joke that I never thought I'd have anything in common with Farrah Fawcett but now I do. Our cancer colour is royal blue. So the first year after I was diagnosed I got a deep blue betta fish, a Siamese fighting fish. I kind of feel like he's my little totem. 

Anyway, welcome to the board and I'm sorry you have the need to be here but I'm glad you found it. There are really good people on here and several with stage four who've been around for a long time. You may never get to say your beat your cancer, you might have to live with it. I so wanted to beat mine but recently realized that living with it is what my life is going to be and I've had to accept that that's okay. As long as they can stay on top of it and I'm still around at least I have that. My life will never be the same as it was but that's my new normal and it's okay. I used to be a person who couldn't sit still, I had to always be busy and always getting things done. I could never understand people who sit around watching TV and being lazy. Now I'm one of them. I am learning to accept it but it's hard. I kept thinking that one of these days I'll get some energy and start working out and get myself healthy again and it's not going to happen. I try not to dwell on it. The worst part is that I'm often too tired and weak to feel comfortable to ride my horse. I've had him for fifteen years. I don't like not wanting to go out and ride or even to just visit him many days. It makes me angry at myself and sad that one of my greatest joys has been affected. He came to visit me at the hospital when I was in the ICU after my blood clot/stroke/cardiac arrests which I get into the details of but my daughter brought him to see me. How cool is that?

Jan