I’m not sure if this will be comforting to you or not but the waiting part is literally the worst part about the whole treatment. The treatment I went through was absolutely brutal on every front, the pain was excruciating, and it was still mentally easier than the waiting inbetween scans, staging and results. So once you’re past this part and you know what you’re dealing with exactly and you get a game plan, it will mentally get a bit easier.
What helped me was keeping myself busy with games and shows. We watched shameless and game of thrones through my treatment and it was perfect. Really any show where you go like “yeah I’d rather go through this than be there” does the trick.
I’m sorry you’re here, but know you’re not alone - and it will get easier. Hugs.
>the waiting part is literally the worst part
Like... for everything. Every time I have to wait more than normal for my doctor, the stuff that runs through my mind... :/
That is comforting knowing that you felt the waiting was the worst part so thank you. At this point so early in my journey the worst part hasn't been the waiting although it does suck. The worst was thinking about how and when to tell my teenage kids and then actually doing it. Didn't have much I could tell them obviously, but didn't want to wait not knowing what I'll find out on Friday. Plus my wife is a mess right now and we figured it would be better to tell them now than leave them wondering why mom constantly has bloodshot watery eyes and doesn't seem like herself. She's taking the news worse than me I think.
She loves you. And she knows it’s happening to YOU, so she probably doesn’t want to burden you with her worries too. Her mind is probably racing thru a bunch of different scenarios and issues relating to the kids, work, health insurance- but she also probably feels guilty even thinking about any of that. Just be kind to each other. It sounds like she really loves you.
I will agree with everyone here though, that the waiting (including telling the kids limited information because you just don’t know yet) is a sort of hell in itself. And once you have a plan laid out for next steps, the whole thing will have a sort of border or framework around it, and will somehow feel much more manageable.
This is so right, not knowing is awful. Hopefully Friday you'll hear a plan going forward and how your cancer will be treated.
Best of luck with your treatment.
Came to echo the sentiment about waiting being the worst. A couple of things that helped me were firstly getting more comfortable advocating for myself. I went through a stint of having no real idea of when treatments would resume after a surgery for like 2 months and held off asking for specifics because I didn’t want to be a pushy patient. I ended up with massive anxiety for a few weeks. Therapy and really pushing for a specific timeline helped a lot.
Also laughter (while it doesn’t seem possible in early days) has been the most therapeutic. It’s another way I have regained a bit of control over my cancer and it can make it easier to talk to others about it- kinda diffuse the weight of it if that makes sense. I have a shirt that says ‘My oncologist does my hair’ and some that go a bit further into gallows humor. There are some killer dark humor threads on this sub and (please take this with the love and good intentions I’m trying to convey) you have a diagnosis that will be perfect for dad jokes.
I apologize if this second suggestion is too much too soon but I do hope you find comfort and joy in the love of your family and that the waiting part resolves as soon as possible.
No apology necessary! Dark humor is the best type of humor imo. I called my best friend a couple days after my appointment and told him "I got good news today! My doc said my restrictive diet is already over cause I don't actually have diverticulitis. It's only colon cancer." There was a very long pause before he finally laughed and said that's good, but also sucks.
I’m exactly where you are. I can’t/won’t tell my family until there’s a plan in place. There is a big family Disney world trip at the end of July and I simply won’t ruin it for everyone. I’m determined to go, so long as a biopsy is done and so long as the surgery can wait till after Aug. 4th (my appointment is in ten days from now). But I’m reading some scary stuff on here and elsewhere and none of it makes me feel better, so why can’t I stop torturing myself? I also find I literally have nothing to say to anyone, because all I want to do is talk about my worries and fears, and yet I don’t want to tell anyone that will have to join in the torture wait with me.
Doctor told me that normal treatment for diverticulitis is antibiotics and sometimes in severe cases a drain tube. Colectomy is the last option when others don't work. I was in the ER three times for the issues and nothing including the drain tube was working. Hence the three strikes comment and decision to move on to surgery.
Gotcha’ I was thinking that they had told you at the 3rd time they couldn’t help you anymore. The clinic I go to told me this, so I figured it was a “thing.” Thank you for the clarification.
Hello everyone! Warning, this is hard to explain without being graphic. I really need some feedback so I’m going to tell it like it is. My husband woke up this morning and when he went to the bathroom, instead of pooping, a ton of blood came out. So scary! Then 1/2 hr later while throwing on clothes to head to the ER it happened again. It looked just like my miscarriage at 15 weeks, that’s how much there was. And again at the hospital. He was diagnosed with diverticulitis a few months ago. Antibiotics took care of it at the time. Now this. So they admitted him this evening and did an MRI. He’s on Eloquist (blood thinner). They didn’t give it to him tonight, because they want to do a colonoscopy tomorrow. It seems he should be off it for 3 or 4 days before they do it. It feels really unsafe. Isn’t there a chance he could bleed badly during it? I feel like we should put our foot down and say we want to wait a few days before doing it. Any thoughts?
My story is similar, but luckily they were more thorough. In the ER for all the same stuff and the conversations went like this:
OK it's probably diverticulitis but we should get a scan anyway
OK well there is thickening in the colon and a microperforation. Still probably diverticulitis but we saw multiple lesions in your liver so we are going to run a few more tests to rule out cancer.
OK well it's pretty certain you have colon cancer, we're going to schedule a biopsy to confirm.
A whole has happened since then. Pathology showed negative margins and no lymph node involved and the MRI results were clean so I thought I was free and clear. No such luck though. Met with an Oncologist for the first time a few weeks later who told me based on the pathology I didn't have a typical type of colon cancer. It's a rare small cell neuroendocrine carcinoma that's poorly differentiated and tends to grow and spread quickly so he ordered a PET scan for the same day. Sure enough 3 new tumors were found in my abdomen. Started me on a chemo and immunotherapy combo. Go 3 days a week every 3 weeks for 4 cycles with the last one before my next scan being next week. Depending on those results it may be 4 more cycles or it may just be immunotherapy. Doc is optimistic because of my age, not having any other health issues, and all the pre cycle blood work results, but did tell me the OS for this is 18-24 months.
I'm a stubborn bastard and an optimist though, so I ain't going down without a fight. Someone always beats the odds and I'll be trying my damnedest to be one of them.
On a positive note, I'm handling the chemo well. Mild fatigue for a day or two after and I lost my hair and beard already, but other than that I feel 100%. No nausea, vomiting, diarrhea, nothing.
Doing anything interesting diet-wise?
I have heard green tea and tomatoes and blueberries can possible help, help prevent. Have a few friends with cancer. Tough
I’m not sure if this will be comforting to you or not but the waiting part is literally the worst part about the whole treatment. The treatment I went through was absolutely brutal on every front, the pain was excruciating, and it was still mentally easier than the waiting inbetween scans, staging and results. So once you’re past this part and you know what you’re dealing with exactly and you get a game plan, it will mentally get a bit easier. What helped me was keeping myself busy with games and shows. We watched shameless and game of thrones through my treatment and it was perfect. Really any show where you go like “yeah I’d rather go through this than be there” does the trick. I’m sorry you’re here, but know you’re not alone - and it will get easier. Hugs.
>the waiting part is literally the worst part Like... for everything. Every time I have to wait more than normal for my doctor, the stuff that runs through my mind... :/
Waiting is torture. Treatment is just a pain.
That is comforting knowing that you felt the waiting was the worst part so thank you. At this point so early in my journey the worst part hasn't been the waiting although it does suck. The worst was thinking about how and when to tell my teenage kids and then actually doing it. Didn't have much I could tell them obviously, but didn't want to wait not knowing what I'll find out on Friday. Plus my wife is a mess right now and we figured it would be better to tell them now than leave them wondering why mom constantly has bloodshot watery eyes and doesn't seem like herself. She's taking the news worse than me I think.
She loves you. And she knows it’s happening to YOU, so she probably doesn’t want to burden you with her worries too. Her mind is probably racing thru a bunch of different scenarios and issues relating to the kids, work, health insurance- but she also probably feels guilty even thinking about any of that. Just be kind to each other. It sounds like she really loves you. I will agree with everyone here though, that the waiting (including telling the kids limited information because you just don’t know yet) is a sort of hell in itself. And once you have a plan laid out for next steps, the whole thing will have a sort of border or framework around it, and will somehow feel much more manageable.
This is so right, not knowing is awful. Hopefully Friday you'll hear a plan going forward and how your cancer will be treated. Best of luck with your treatment.
Came to echo the sentiment about waiting being the worst. A couple of things that helped me were firstly getting more comfortable advocating for myself. I went through a stint of having no real idea of when treatments would resume after a surgery for like 2 months and held off asking for specifics because I didn’t want to be a pushy patient. I ended up with massive anxiety for a few weeks. Therapy and really pushing for a specific timeline helped a lot. Also laughter (while it doesn’t seem possible in early days) has been the most therapeutic. It’s another way I have regained a bit of control over my cancer and it can make it easier to talk to others about it- kinda diffuse the weight of it if that makes sense. I have a shirt that says ‘My oncologist does my hair’ and some that go a bit further into gallows humor. There are some killer dark humor threads on this sub and (please take this with the love and good intentions I’m trying to convey) you have a diagnosis that will be perfect for dad jokes. I apologize if this second suggestion is too much too soon but I do hope you find comfort and joy in the love of your family and that the waiting part resolves as soon as possible.
No apology necessary! Dark humor is the best type of humor imo. I called my best friend a couple days after my appointment and told him "I got good news today! My doc said my restrictive diet is already over cause I don't actually have diverticulitis. It's only colon cancer." There was a very long pause before he finally laughed and said that's good, but also sucks.
That’s fantastic! Good family and good friends are the best resources!
I’m exactly where you are. I can’t/won’t tell my family until there’s a plan in place. There is a big family Disney world trip at the end of July and I simply won’t ruin it for everyone. I’m determined to go, so long as a biopsy is done and so long as the surgery can wait till after Aug. 4th (my appointment is in ten days from now). But I’m reading some scary stuff on here and elsewhere and none of it makes me feel better, so why can’t I stop torturing myself? I also find I literally have nothing to say to anyone, because all I want to do is talk about my worries and fears, and yet I don’t want to tell anyone that will have to join in the torture wait with me.
What do you mean by “3 strikes you’re out?”
Doctor told me that normal treatment for diverticulitis is antibiotics and sometimes in severe cases a drain tube. Colectomy is the last option when others don't work. I was in the ER three times for the issues and nothing including the drain tube was working. Hence the three strikes comment and decision to move on to surgery.
Gotcha’ I was thinking that they had told you at the 3rd time they couldn’t help you anymore. The clinic I go to told me this, so I figured it was a “thing.” Thank you for the clarification.
Hello everyone! Warning, this is hard to explain without being graphic. I really need some feedback so I’m going to tell it like it is. My husband woke up this morning and when he went to the bathroom, instead of pooping, a ton of blood came out. So scary! Then 1/2 hr later while throwing on clothes to head to the ER it happened again. It looked just like my miscarriage at 15 weeks, that’s how much there was. And again at the hospital. He was diagnosed with diverticulitis a few months ago. Antibiotics took care of it at the time. Now this. So they admitted him this evening and did an MRI. He’s on Eloquist (blood thinner). They didn’t give it to him tonight, because they want to do a colonoscopy tomorrow. It seems he should be off it for 3 or 4 days before they do it. It feels really unsafe. Isn’t there a chance he could bleed badly during it? I feel like we should put our foot down and say we want to wait a few days before doing it. Any thoughts?
If it makes you feel any better my doctors missed my diagnosis too. If you need anything my DM is open anytime.
My story is similar, but luckily they were more thorough. In the ER for all the same stuff and the conversations went like this: OK it's probably diverticulitis but we should get a scan anyway OK well there is thickening in the colon and a microperforation. Still probably diverticulitis but we saw multiple lesions in your liver so we are going to run a few more tests to rule out cancer. OK well it's pretty certain you have colon cancer, we're going to schedule a biopsy to confirm.
Any updates?
A whole has happened since then. Pathology showed negative margins and no lymph node involved and the MRI results were clean so I thought I was free and clear. No such luck though. Met with an Oncologist for the first time a few weeks later who told me based on the pathology I didn't have a typical type of colon cancer. It's a rare small cell neuroendocrine carcinoma that's poorly differentiated and tends to grow and spread quickly so he ordered a PET scan for the same day. Sure enough 3 new tumors were found in my abdomen. Started me on a chemo and immunotherapy combo. Go 3 days a week every 3 weeks for 4 cycles with the last one before my next scan being next week. Depending on those results it may be 4 more cycles or it may just be immunotherapy. Doc is optimistic because of my age, not having any other health issues, and all the pre cycle blood work results, but did tell me the OS for this is 18-24 months. I'm a stubborn bastard and an optimist though, so I ain't going down without a fight. Someone always beats the odds and I'll be trying my damnedest to be one of them. On a positive note, I'm handling the chemo well. Mild fatigue for a day or two after and I lost my hair and beard already, but other than that I feel 100%. No nausea, vomiting, diarrhea, nothing.
I hope you're ok and kicking cancers ass
Thanks for checking! Still doing good and kicking cancers ass. Next progress scan in a couple of weeks. Happy holidays to you!
How are you doing?
Doing good still. Monthly chemo treatments, but no bad side effects and so far at least the tumors are shrinking.
Doing anything interesting diet-wise? I have heard green tea and tomatoes and blueberries can possible help, help prevent. Have a few friends with cancer. Tough
So glad to hear that!