Hi… here for hope, positivity, and tips

I know how shocked you both must be at the diagnosis, unfortunately this disease seems to be popping up in younger and younger folks.

First of all, not hubby's fault that it is at stage 4 and should have been checked sooner.  Many folks have little to no symptoms and end up with the same diagnosis.  Some colon cancers spread faster than others.

Now, as to daily living.  Find a time and place where you can be alone to cry, shout, express your feelings.  If you don't you may find yourself unable to help hubby as you want to do.  Caregivers have a real rough road and need to take care of themselves too.

Next, stay away from the internet searches on statistics.  They are meaningless.  Not only are they done from patients years ago, but they also can't predict the outcome for a single person.  Each person reacts differently to treatments and the disease itself...one of the reasons it is so hard to prevent.

Great that you are going with hubby to appointments.  You might also want to keep written record of any issues, questions that you want to bring up in the appointments.

Ask the oncologist if there is a way to contact him or his staff after hours...just in case something comes up...fever, excess nausea, redness around port...whatever.

The side effects of chemo are cumulative, so watch for changes as the weeks go by.  There are many meds to help with the side effects.  There is also the possibility of changing the dosage if needed, or in dropping one of the chemo drugs.

My sister's onc said she could have whatever she wanted to eat...in order to keep up weight...the Oxy will make it difficult to have cold things and may cause cold from even the fridge uncomfortable for his hands...so make sure he has some gloves handy...order a clip for on the fridge door from Amazon...lol.

Keep coming back and the folks here will do their best to help you and hubby navigate this new world.

Hugs,

Marie who loves kitties

Hi Val I have a similar story In March I was having what I thought was a heart attack turns out it was my Gallbladder I had a scan at that time and they found a large tumor in my colon Had surgery on April 24th to remove my gallbladder apendix and the colectomy for the tumor and 32 lymph nodes 18 of which showed cancerous cells so at that time stage 3 diagnosis got my port placed in May had a full PET scan in June it showed that it had pread to my lungs upgraded to stage 4,  3 nodules the biggest is 6 cm they increased in size since the first scan and one that wasn't seen on fisrt scan in March. I turned 57 on the 28th of June I currently weigh 180 lbs I have completed 2 infusions of Folfox 6 and so far the worst side effect that I have is the neuropathy in my hands. I will be starting a new chemo for the lungs not sure yet what I have a chemo teach coming up Friday on the 5th they will explain the treatments. I currently go every other week I'm there for 4-6 hours then take the pump home for 48hours then back for 1-2 hours for the pump to be removed. I'm very optimistic that I will beat this I have 2 young daughters that I plan on walking down the Isle some day my oldest just graduated from college youngest is a sophmore in High school. I hope your husband has the minimal side effects as we are all different. Good Luck prayers sent for you and your family.

So far So Good

Nicktacoma

Welcome and I'm sorry for what brings you here. Our cancer centre provided a book with things divided into areas for things like keeping track of doctor's numbers and appointments and all kinds of things. I wish I could remember but I was in denial and didnt use it. I wish I had. You could make your own book, though. I wasn't organized and didn't write things down like what my initial stage was besides 3, no letters after that. I was told once but didn't write it down. My brother was diagnosed with cancer after I was (dofferent cancer) and he was meticulous. I thought it was such a good idea. 

I'm now stage four with mets to both lungs, my liver and back in my colon. Despite that I expect to live another 5 plus years at least. They found a chemo that works for me to keep the cancer at a certain level and so I'm onmaintenance chemo for life. It'll likely never be gone but I can live with it. There are several people on here who had stage 4 and are doing fine or very well, some are NED (no evicdence of disease). So anything is possible.

The thing is it's such a shock and it will take time to come to terms with the life change you two are facing. I was diagnosed over 5 years ago and still haven't fully accepted it. It just doesn't seem right to me or real. I suspect that the reason for the medical professionals you've encountered feeling sad for you, which is not something they ought to be showing, is because of the fight they know is coming up, not necessarily because they think he's at death's door. It's going to be tough. Your husband is going to go through some real crap and that's the truth. We all respond to treatment in differing ways so nobody can say what it will be like for him but it goes without saying that it's not going to be fun. But it's doable. And when I get through another setback I feel empowered. People will say 'I don't know how you do it, your'e so strong' and they're absolutely right. I never woukd have thought I could do the things I have, I was scared of needles before this. But when you walk through this fire and come out the other side and know you did it, it's empowering. 

I'm glad you found this board. You'll get some great information from people who have been there while your oncologist won't have the time to tell you everything or even know what it's like to live with it. And nobody can understand like we do.

Jan

I know how lost you must feel. We have all been there. I will be honest with you... In the following weeks it's going to be tough. This sh1t is not easy. You have to gather your strength and be brave and be ready to fight.

No one is going to take care but you. Get the best team working... Oncologist, surgeon, whatever you need. Get second opinions. Push for care. Start a relationship with your team of doctors. Get them in invested in solving this problem.

Remember we are here to listen when it gets hard. Sending you love and strength to face this.

K