smabify

Hey Rob, I hear ya on the hamster wheel! I often wish I knew what God's plan is, but so far, there's only radio static. No words of wisdom, just saying I hear ya! Lots of hugs too Sarah

"I want to go home. I'm so tired. Name her Leanne. " He asked permission, and settled on our daughters name. She was born 10 weeks later.

Way too many to name... Unchained melody by the righteous brothers was the last to make me cry, though everybody hurts (REM) is up there. Fare thee well love (Rankin family), the dance (Garth brooks) fix you (coldplay), always on my mind (Willie nelson) and many many more. Not to mention all the songs from musicals that could be on this list

As brokenhearted said, newbies are so very welcome! Ive never been to a bago myself, and so am kind of lost on this organization thing, but if pep and optimism can get us through, I'm your girl!

Children are very welcome! I have two small chicklets who come with me everywhere, so bring on the kids!

We do the $5 dinner series. Once or twice a month, I spend a few hours cooking, which, I'll admit, can be a pain. However, the reward is that I have a huge stash of ready made meals in the freezer. Usually, I do two plans at once, and alternate - every other night is a crackpot meal. I can post the link to the site once I'm off my phone! P.s. as someone who loves to cook, I'm always up for new recipes!

So since we're not doing surgery this summer, I was wondering which more people can attend? July 25th or September 26th? July usually includes some summer weather here, so we could do beach / campfires / Niagara falls (inc. Gambling and shopping, for those interested), and a lot more! Right now, looking for interest and availability 😀

On the day of the funeral, my uncle pipes up "if you had only tried _________ (name of experimental medical " treatment " here), he would have lived. I meant to tell you sooner, but I've been busy " I still have trouble talking with him now, almost 3 years later. My mom, a few months later "you knew he could die. You knew the family you married into". Thanks, mom. Many people, after finding out DD had same genetic condition as DH died from and would need surgery " don't worry, you've seen it before." And my absolute favorite: day of funeral, distant relative "are you going to keep the kid? Really? What about the fetus? That one too? Huh" he deserved a well placed kick in the shins.

OK - So maybe a little bit ahead of myself here, but I'm the person that would sit in a box for her whole life and never come out. I'm thinking Saturday, September 26th looks like a lovely day to have a bago! I'm thinking we can keep it Falls - Centered, as there is lots to do, and several choices for eating. If there is enough interest, we could make it a weekend thing (Friday to Monday?) with wine tasting, a show and a fun night out for the feature events. Any interest? Will that date work for anyone?

If I hear a take on "you're young, you'll find a new guy soon" I'm honestly going to scream! Guess what - I've been doing this alone for almost three years now, and look! We're doing ok. Don't NEED a man. Would it be nice to have someone else make the coffee once in a while? For sure! Besides, it's just not that easy. I have two small kids with severe medical issues. No man wants to take that on. And, the big one, when the hell am I supposed to meet this new guy? Between doctors appointments? Or maybe he'll randomly knock on my door, we'll dance until midnight and he'll marry me only of the shoe fits? (Ive always wondered at the Cinderella story - what were you doing while you were dancing if you didn't even tell each other your names?) Anyway, thanks for the vent session.

anyone up?

Is there any interest in a southern Ontario bago mid September? Our 2 weeks of summer may be over, but we do have a lovely fall here There are lovely wineries, a world George Bernard Shaw Festival (for the cultured geeks like me), and, of course Niagara Falls! Details to be determined, just asking about interest levels.

no bagos for me. Us southern ontarians can't seem to get it together to do a bago, unless it's the organized group one that costs hundreds of dollars that people like me can't afford. Oh well, virtual world will do for now.

Forgive the rant here. I'm just steaming mad right now. My four year old is a real terror lately. She's having nightmares at night, so is exhausted during the day. When I put her down for quiet time, she starts destroying things. Tearing books apart, everything out of her dresser, pillow stuffing is every where. I took everything out of her room. All that's left is a bed. So what does the kid do? She opens up her ileostomy bag and spills poop all over her floor. Is it legal to tie her hands together? Anyone want to buy her? I'm telling you - it's a matter of time before she takes her bed apart.

Pink Floyd has several songs (US & Them has TWO sax solos) Gerry Rafferty (sp?) Baker Street The Revels - Comanche (song from Pulp Fiction) David Bowie - Modern Love Rolling Stones - Slave Stooges - Fun House Bob Seger - Old Time Rock and Roll (check out Jimmy Fallon ) Billy Joel - Just the way you are Lou Reed - Walk on the Wild Side Or you can just google it! And how did I forget? Supertramp the Logical Song! Happy musicing!

I guess I should add my story as well, especially since I started the thread. DH was diagnosed with MEN2B, a syndrome that attacks the endocrine system, at age 7. By that time, it was too late. He had medullary thyroid cancer. By the time we were dating, at age 20, it was clear it had metastasized, but we weren't sure where it was. He went through several neck dissections, taking out cancerous lymph nodes. The surgeries were horrible, but also effective at keeping the cancer manageable. We were told that although there were likely to be many more surgeries needed, his quality of life wouldn't be affected overly much, and that he could live to 60 or 70 years old. After our first daughter was born, he never felt very well. He was constantly fatigued and said he felt "funky" (I rubbed off on him for that language!). More tests were ordered, and they found a pheo located on his left adrenal gland. Operation in December 2011. We came home from the hospital christmas eve. He never really recovered. Sure, he was up and about a little bit, but found everything to be a ton of effort. He would go in to work (as a landscaper), and be sleeping in the office. Throwing up out of the door of his truck. He made every effort, but couldn't seem to get better. In late January, his bowels decided to stop moving. They just quit. Another surgery and a bunch of drugs made them go again, but that was kind of the beginning of the end. March 21 saw us back in the cancer hospital for more tests. This time, a mass was found in his liver. They admitted him to hospital to biopsy it, and results came back that this was the thyroid cancer we had been watching for. Another surgery was just not realistic - there were so many nodules in various parts of the body (spine, pancreas, lungs, gallbladder, intestines...) that if they started taking things out, they would never stop. There was a promising new drug just come onto market which would possibly shrink the tumors, but it was going to take a while to get it. On Friday, April 13th, we were sent home from the hospital to wait for the drug. While we were at home, things went downhill quickly. Organs started shutting down. Pain was unbelievable. He were given a pain pump which would give him constant morphine, however he had to drag the stupid thing everywhere. I lost count of the times I would tell him not to take the lamp out of the bedroom, because in his confusion, he would think the lamp was the pump. I was on call 24/7, doing everything for him. I was also caring for a 16 month old girl with gut issues who was not sleeping through the night, and 7 months pregnant. To say it was horrible was an understatement. He turned yellow from liver failure. His kidneys were shutting down. His blood work showed a lack of several vitamins and minerals his body was just not producing anymore. He had trouble getting oxygen into his lungs. But we got the call. The drug was coming in! We expected it to be available in a week. May 10. However, this was a version of a chemo drug. With failing organs, was it even worth it to try? I refused to make any decisions until I had to cough up the money for the drug. We had a week. On May 9, it became clear that the drug wouldn't work. Organs were shutting down, toes were becoming black. Technically, Colin shouldn't have been alive anymore. The next night, we had our final conversation. He said that he was tired, and he wanted to go home. He wanted it to be over, he wanted to die. I kissed him, and told him he had done well, and it was time for him to rest. We talked of the baby, and decided on her name. We said our final I love yous, and then he fell asleep. A nurse was staying the night at our home, for I had finally broken. I slept in the spare bed, for I was exhausted. But that night did not go well. Colin was walking to the bathroom, though all indications were that he should not have even been able to walk. He refused help, wanting his dignity to the end. The nurse had to almost carry him back to his bed, with him fighting her every step of the way. It was his one last fight. By the time I woke up, he had surrendered. He was in a coma. I spent most of the day laying beside him, holding him. The nurse came by many times that day, sure he would be gone. Also sure that I probably wouldn't call, since it was not an emergency. And then, at 8:20 in the evening of May 11, 2012, he was gone. He went peacefully, in my arms. I loved him. Forever and for always. Even if he left me with a 16 month old, 7 months pregnant. My girls both inherited MEN2B from their dad. I am terrified that this will happen again, even though they have each had their thyroid out. PS - sorry this is so long. I guess I really needed to get it out.

I did, @brokenheart2. They come 2-3 times a week, but for something like this, they can only order supplies for 8-10 weeks. Not sure why, but that's the rules :-(

I have an odd question. Has anyone done a fundraiser for anything? If so, what did you do and how did it work? Was it a lot to plan ahead of time? Background: my daughter now has an ileostomy, after a long long long bout with constipation. I find it odd, but the supplies are not covered here (I live in Canada), and they are very expensive! I'm not working, and no insurance company will take her on as it is a preexisting condition which caused the bag. There is no way to afford this on my own. Before it is suggested, I'm not willing to do a "go fund me" thing. I think it would be tacky and a bit melodramatic to set one up for myself. Widowhood sucks. I hate being a charity case.

I just want to say "thanks" and encourage you in any way that I can doing this! I am upset that I cannot offer my time to help you, however with all the care that my dear chicklet needs at this time, it's just not possible for me Thank you for reaching out though!

Hi everyone, I'm wondering how many other cancer wids there are out there? I know that there are many of us, and that we all have a unique experience, but I just wanted to get a feel as to how many there are. I don't belong in the suicide threads, because, well, not suicide, and I'm not quite sure I belong in the caretaking thread because it wasn't really a long time, in perspective. Really just confirming I'm not alone! I don't like to be "unique" all the time, you know? (Even if I do sing at the top of my lungs throughout Walmart while my 2 year old tells me to shush)

Sometimes, the best cheerleaders are not the ones with the pom poms yelling "Rah Rah you can do this, you're so strong (words I absolutely HATE), you have been doing this, blah blah blah". Most of the time, the BEST cheerleaders are the ones who look you in the eye and say "yeah, it is hard. It really sucks. Vent away." They do not judge, they do not try to solve everything. They do not remind you how good you have it or how wonderful life is. They listen, they give you a hug, maybe they pray simply, then they go away. To me, that's what a real cheerleader does.

I understand that the original founders have moved on, but I think that maybe they could have handled it better. If this was truly a decision made over time, I think that there could have been some warning as to what was happening. Even a few days to get a message out there and for us left in the trenches to band together. I have to agree with @brokenheart2 and @stargazer74 - it seems very cold and arrogant to me. It is very true that something needed to be done, moderators were needed and things needed to be passed along and changed. I am thankful to Jess and Justin for getting the site up so quickly! I just wish that it could have been better notice. As Mrs. Dan pointed out so eloquently, we have already been through trauma. We don't need our lifeline taken away as well as our spouse.