The Colon Club

Mrs. Ziggy,

I finally took the time to go back and read all of your posts from Day 1. Wow, your sharing of all the good and the bad is both heartwarming and heartbreaking at times but I'm grateful that you are able to chronicle the difficult journey. I follow NHMike's journey too, everyone on this forum has so much to offer from their own experiences as well as information about trials and supplements.

I laughed when you wrote about all of this being above your pay grade. I'm with you on that, I feel like I need to go back to school!

Praying for your husband and so many others on here for successful treatment and improved quality of life. I'm glad we all have each other to celebrate the good days and support each other on the rough ones. Take good care of yourself because you have much to live for and I know you want to continue to be there for Mr. Ziggy.

Hugs and good vibes on their way to both of you ❤️

Shana

Hi Mrs Z! Did you all go to the hospital today to get Mr Z checked out?

We went up for FOLOX+A, first treatment since Dec 26. Sort of glad to be back into the routine. New scheduling system causing problems for us (a 3 hour wait between Dr and infusion? no thanks) but perhaps they will get it worked out.

Robino, if all goes well we are headed to Fort Lauderdale in 10 days: please order some extra warm weather for us. The OX really makes DH cold.

Hugs to all,

M

mhf1986 wrote:Hi Mrs Z! Did you all go to the hospital today to get Mr Z checked out?

We went up for FOLOX+A, first treatment since Dec 26. Sort of glad to be back into the routine. New scheduling system causing problems for us (a 3 hour wait between Dr and infusion? no thanks) but perhaps they will get it worked out.

Robino, if all goes well we are headed to Fort Lauderdale in 10 days: please order some extra warm weather for us. The OX really makes DH cold.

Hugs to all,

M

The weather will be grand!!!! Your husband is going to enjoy the warmth.

Fort Lauderdale is about 1 1/2 hour south of me. I think we are done with any of that chilly weather we experienced this winter.

Hi all,
I don’t know what to say, but I know you’ve all been very supportive and kind to me and Mr Ziggy. I wish I had better news to report. Today Mr Ziggy is getting stents put in his ureters due to some kidney stones and disease blockage. Hopefully they can he’s still a bit weak. He has absolutely no pain at all thank God. Never has had pain, just weakness and nausea. The stents will hopefully help with that. No blockages in intestines, but inflammation where they reconnected his small and large colon. So eating is a problem, can’t put feeding tube in.

So the nurse at Sloan called me Monday. Nothing is stopping his particular disease and he can’t physically handle more treatment. Sloan and local hospital recommend hospice now. And recommending in patient at that. The nurse called again from Sloan (on speaker phone) and told both Mr Ziggy and I. As kind and compassionate as she was, shouldn’t the doctor have done that? I don’t know how I feel about that. Of course we are both sad, but I’m not surprised. I want to wish only the best for all of you! You are all great people and I hope and pray you all continue to do well and enjoy life! God bless

Zig2017 wrote:Hi all,
I don’t know what to say, but I know you’ve all been very supportive and kind to me and Mr Ziggy. I wish I had better news to report. Today Mr Ziggy is getting stents put in his ureters due to some kidney stones and disease blockage. Hopefully they can he’s still a bit weak. He has absolutely no pain at all thank God. Never has had pain, just weakness and nausea. The stents will hopefully help with that. No blockages in intestines, but inflammation where they reconnected his small and large colon. So eating is a problem, can’t put feeding tube in.

So the nurse at Sloan called me Monday. Nothing is stopping his particular disease and he can’t physically handle more treatment. Sloan and local hospital recommend hospice now. And recommending in patient at that. The nurse called again from Sloan (on speaker phone) and told both Mr Ziggy and I. As kind and compassionate as she was, shouldn’t the doctor have done that? I don’t know how I feel about that. Of course we are both sad, but I’m not surprised. I want to wish only the best for all of you! You are all great people and I hope and pray you all continue to do well and enjoy life! God bless

Mrs. Ziggy

I am so saddened at your news. I truly hoped for a much better outcome. You have been (as had Mr. Ziggy) so brave and so supportive in fighting this damned disease. I am sincerely thankful he is in no pain.

My heart is breaking for you. Hugs and love from afar.

Zig2017 wrote:Hi all,
I don’t know what to say, but I know you’ve all been very supportive and kind to me and Mr Ziggy. I wish I had better news to report. Today Mr Ziggy is getting stents put in his ureters due to some kidney stones and disease blockage. Hopefully they can he’s still a bit weak. He has absolutely no pain at all thank God. Never has had pain, just weakness and nausea. The stents will hopefully help with that. No blockages in intestines, but inflammation where they reconnected his small and large colon. So eating is a problem, can’t put feeding tube in.

So the nurse at Sloan called me Monday. Nothing is stopping his particular disease and he can’t physically handle more treatment. Sloan and local hospital recommend hospice now. And recommending in patient at that. The nurse called again from Sloan (on speaker phone) and told both Mr Ziggy and I. As kind and compassionate as she was, shouldn’t the doctor have done that? I don’t know how I feel about that. Of course we are both sad, but I’m not surprised. I want to wish only the best for all of you! You are all great people and I hope and pray you all continue to do well and enjoy life! God bless

Mrs. Ziggy,

I don't have the words to adequately express my sadness at your news. MSK is considered foremost in cancer care and it's mind boggling that your husband's cancer has been so aggressive.

Thank you for sharing your journey with us and I still hope that there is more time and treatment options out there. You are both so brave, I'm glad that he's not in physical pain, that is a blessing. Please let us know how you are doing, we are always here to lend an ear and support.

Many hugs from afar,

Shana

Thank you Shanna and Robin. I appreciate it. Today was a little tough butt he’s doing ok. The hospice I called couldn’t have been more lovely. My friends dad had them and said they were wonderful. I feel he will be in good hands during the day. I love him and he told me he adored me today! That made my day! Also I actually enjoy taking care of him and being useful. And he isn’t keen on other people around him except nurses and doctors. They bring comfort too. God definitely calmed my heart today. Love you guys!

MHF 3 hour wait between doc and treatment? Are you going in earlier? We would sometimes have labs at 7:30, then sometimes ekg or something and consult with doc then treatment. Those were usually long days. Even just labs and treatment took a few hours waiting around and such. Yeah it’s good being on a routine!

Mrs. Z, Sending you hugs and prayers. Am at a loss for words. Well, I will say do what feels right for you and for him, that's all that matters.

As far as scheduling goes, DH has blood work on Friday or Saturday, maybe Monday, at a local lab; results are ready either the day before treatment or the morning of. We usually leave the house at 6:30 to see the Dr at 8, followed by treatment at 9:15, done by 1:30. This new scheduling protocol only allows for a certain number of patients per nurse at a time which means fewer appointments. The Dr only allows treatment to be booked for the next time once DH has started the current day. By the time I got to the scheduler to get his March 6 treatment booked, the only slot available was 11:45. I don't know if it's staffing cuts or what. I talked to the scheduler again today and she kept saying it's the new computer program. I fussed at the head lady yesterday. But I also found out some Dr's allow for more future scheduling so that's what I've asked for. We'll see...

Please take care,
M

MHF with everything you have going on I feel bad for you that there’s stress with scheduling. It’s required that he gets it at the day/time needed. I know we spoke to the RN assigned to Mr Ziggy and his doctor about scheduling later appointments in his case. I also got a little persistent when I got push back about rescheduling times but sometimes these guys feel poorly and the early hour rush is hard on them. Maybe try that route. It worked for us, don’t feel like a pest to them. It’s on them to get you in when needed and the times needed. Sending all my love to you today! xoxo

Mrs. Ziggy - I just read this whole thread. My fear is that my husband is just a few months behind Mr. Ziggy. He just had the ureteral stents put in a week ago. He has small pleural effusion, and now bone mets. They had him start FOLFIRI+Avastin on Wednesday after FOLFIRI+Erbitux failed. He's in a lot of pain right now and also sleeps a lot. I've accepted the fact that I will lose him, but I'm so afraid of what lies between now and then. I don't want him to suffer for a long time. I want our children to remember their daddy strong and smiling. But like you said...no matter what, God is still good. I will be praying for you and Mr. Ziggy.

Dear one,
I can’t imagine what you’re going through right now. I know it is so hard thinking about losing a life partner, and it must be even harder with children. My heart hurts for you but there is still hope and time if they are treating him. Your hubby sounds like a very strong man. The treatments aren’t easy I know. Please try to surround yourself with supportive family and friends and I hope you have someone close to share things on a spiritual level. Whether that be minister, rabbi, etc. I also think speaking openly and honestly with hubby as he goes through treatment is vital. Most of all love on him a lot. I wrote a long post here yesterday on the status of my husband’s journey, but it apparently didn’t post. My sincere love and prayers go out to you, and I’m hoping your family is trying to keep things as normal a routine as possible for the kids. I also learned if someone wants to help with kids, house, groceries and whatever, let them. They sincerely want to express love and want to help. All my love, Mrs Ziggy

Mrs. Zig, my deepest condolences to you. Prayers, thoughts, hugs, more prayers too.

M

Mrs. Ziggy,

Your husband passing has hit me harder than any of the others for some reason. That was so fast! My heart hurts for you. I can't seem to stop crying.

May you be blessed with the knowledge that he deeply loves you.

Oh GOD I hate this disease.

All my love to you.

Thank you sweetheart. I know he’s in a better place and waited to get home to his wife and kitty. It was a privilege taking care of him as he deserved love and care at his end of life. He deserved only the best. Today the sun is shining and even though it is chaotic right now, these are earthly things and will get sorted out. Main thing is we are here and will carry on each day. God has been so good through all of this and every time something happened, someone came along side of me to help. And believe me I’m completely alone in unchartered waters. But I have a good captain! I’m grateful for the years I knew and loved my husband but I know it was time for him to go. He could have suffered pain and a long illness time, he did not. Never had pain at all. Just nausea and that was controlled. I’ve grown to love you Robin and all and will continue to come on here because I care about ups and downs and successes! Live every moment and go do everything you enjoy doing, now. That’s what I tell people regardless of health status. Love, Mrs Ziggy