new to the cancer journey

starbuxgirl · January 2014

Hi! My husband was diagnosed last year with stage 4 colon cancer. We are young (early 30's) and it is a rare aggressive form of colon cancer. We have 3 young kids. I am writing because I have always been the more practical one in the marriage, while he is more optimistic, assuming everything wil just work out and tends to go with the flow. We are 6 months into treatment, initial chemo/radiation, surgery, now in cycle 4 out of 12 for chemo. I am frustrated b/c he keeps saying he's going to beat this, and I really hope he does, but I also feel like we need to talk about some of the reality of what happens if he doesn't. What happens if this is an ongoing fight for years? He wants to act like we'll be done in May and never have to think about cancer again, and I just don't think that's realistic. If he doesn't survive, I am the one left to pick up the pieces. He gets upset at me, accusing me of being negative. Am I crazy for wanting to talk about the practical stuff too?

Ladylacy · January 2014

Men

Men what can I say. Mine has been fighting cancer since the late summer of 2010. He is terminal and has refused further treatment but I can't get him to talk to me about anything. As caregivers it is just as hard on us watching and dealing with our loved ones with this horrible thing called cancer. You are both young with small children, we are retired with grown children, grandchildren and great-grandchildren so there is a difference.

Your husband only wants to fight and think positive and believe me there is nothing wrong with that. That is good for him, so many just give up and do absolutely nothing. When he is ready to talk about it, and he may never be, then be ready to listen. Until then just take care of yourself because you are just as important and your mental as well as physical health is important.

As hard as it is, just don't push him. Stage 4 can be beat and people do it and survive for years while others with stage 2 dont' survive. Just keep positive.

Wishing you and your husband the best -- Sharon

mr steve · January 2014

Star

I lost my wife to cancer, and it was a 4 year fight. I too was worried about the end, but we waited until she desided no more treatments. Then we sat down and talked. I don't know if you want to do the same but being positive helps to keep a better mood in the house. I hope that you all are done with this in May and we never hear from you again. Keep positive until you have reason not to be. Please come and vent anytime.

Steve

geotina · January 2014

Starbuxgirl

It is way too early in your husband's cancer journey to have these conversations. See what happens when May rolls around. Right now he needs to stay positive. You need to stay positive. Many Stage IV colon cancer patients do not succomb to the disease for a long time. There are many Stage IV's on the colon cancer board who have lived with this disease for more than 4-5 years. Thinking treatments, etc. will be over in May is not realistic right now. Yes, my husband died from colon cancer but when diagnosed in 3/09 with advanced Stage IV, everyone thought he would not see Christmas, but he did, for 3 1/2 years and he worked for 3 of those years. Don't give up hope and please, don't take your husband's hope away he just may be one of the ones that does beat this disease.

Take care - Tina

atma9 · January 2014

similar situation

Dear starbuxgirl,

my husband has been fighting a rare stage 4 cancer for 4 years of almost continuous treatment. we have two young boys - who were babies when he was diagnosed. the elephant in the room for us too always is what will happen if he can't fight this anymore. when we first started dealing with this, all I could do was cry and envision being a widow and raising my boys all by myself. this is still the horrible fear we live with every second of every day and every moment is made bittersweet with the thought that it might be our last together. every christmas i silently hope we have another, every birthday I hope that he's in the pictures next year. we learned early that dwelling on the worst case scenarios robbed us of the present - and that's all we really have.

there's nothing wrong with wanting to discuss the practical things - but realize that you don't know anything about the future and trying to prepare for it may not be worth the emotional stress. Cancer has taught me, a strict type A personality who had it all planned out, that we don't and can't control anything except for how we deal with things that happen to us. your spouse is dealing with what he has to go through by staying positive and focusing on beating this. he needs you to be on that same page.

i understand that your way of dealing with things might be to have plans and discuss possibly negative outcomes - but the time for that will be evident and doesn't need to be now.

we were told my husband had only 6 - 9 months to live and four years later he is still fighting. I wont say life is easy. I won't lie to you and tell you that I stopped worrying or being scared. Our life has changed dramatically and as caregiver/wife/mother/homeschooler (we can't risk the germs of regular school with his immune system being on daily chemo) things are difficult sometimes. However, we're still together and I know how lucky we are for that. SO, my advice to you is to put the "practical" thoughts aside - you will be able to deal with all of those issues when you have to. FOCUS now ONLY on what you absolutely have to - take it minute by minute and take care of yourself, enjoy your children, take lots of photos, treat yourselves whenever and however you can. This doesn't mean that you have to live in denial or pretend your family isn't going through something terribly difficult - it just means you deal with the present as best you can and let the future unfold how it may. never give up - on your husband or on yourself. it's ok to have breakdowns, some days will be horrendous, others will be alright, but through it all just do your best and it will always be enough.

Take care -and hang in there. having small kids and a spouse with cancer is really difficult - but you can do it.

Chelsea71 · January 2014

Hi Starbuxgirl. My husband,

Hi Starbuxgirl. My husband, Steve, passed away five months ago from MCRC. I do think you need to have those practical conversations and put things in place for your peace of mind as well as your husbands. I think everyone should have those talks, cancer or no cancer. We just never know what life is going to throw at us and we need to be prepared. Especially where young children are involved. I certainly understand your anxiety. I am the type of person who prefers to deal with reality and be prepared for the worse case scenario. Having said that, hope is what kept Steve and I going thoughout his illness, right up until almost the end of his life. We approached his illness like a chronic disease and our goal was to manage it as such for as long as possible. If he started to feel discouraged, I would remind him of all the different treatment options that are now available and also of the new ones on the horizon. We adopted a one day at a time approach towards life. As a caregiver I tried not to think ahead. I would become panicky if I dwelled too much on the future and all of the what if's. Steve was quite good at living his life and forgetting about cancer. He could compartmentalize the disease and deal with it only when he needed to. At times I thought he might be in denial but yet it seemed to help him. Now that he's gone I really hope that he was in denial. It brings me comfort to think that perhaps he spent his last years thinking that maybe he would grow old. Steve's situation was not your average. He developed some unusual complications. Throughout his illness I always dreaded the day when we would be forced to accept that he had run out of options. The day we decided to stop treatment was not what I expected. I think the decision came as a relief to Steve. He was just so tired. The day he died he told me that he thought the whole experience was much harder emotionally on me than it was on him. I would agree. It's very hard to watch a loved one suffer. Such a very helpless feeling. Towards the end of his life I remember thinking that this was the hardest thing I would ever experience. I was wrong. Moving forward without him has been just as hard. I miss him terribly and long for the days we were together.

My advice is to let him go with the flow as long as possible. Take a positive approach. When you're upset, overwhelmed and needing emotional support, turn to all your new friends here at CSN.

Remember to look after your own health. You have to stay strong as you have so many people relying on you. Feel free to rely on us.

Chelsea

meltibbs · February 2014

Beginnings of Cancer Journey

Starbuxgirl,

I am in a boat much similar to yours. I am 39 years old and my husband is 41 years old. We have a 5 year old daughter and a 7 year old son. We have been together for almost 12 years and married for 9 of those years. My husband was diagnosed with Stage 4 Colon Cancer in August 2013 at the age of 40. He had been having many stomach issues throughout the summer. He now has tumors on his brain, liver (which is 80% diseased), spine, and stomach. He had surgery in September 2013 to remove the tumor in the colon after it grew outside the colon wall and caused an abscess which caused an infection in his body. He started chemotherapy in October 2013. He will now also be getting radiation on a tumor in his spine that is now causing him pain. Our entire world has changed. My husband worked full time and I worked part time on nights and weekends prior to this diagnosis. I had to stop working in September to stay home to care for my kids and my husband. My husband went from being an energetic person, a runner, and a very involved father to a person who does not get out of the house at all and is either sitting or lying down all day long. He has lost 50 pounds and is weak. He has a hard time eating much due to constipation issues due to the surgery and chemotherapy. Friends and family were very involved in the first month or so, but have dwindled. I am thankful for the few close friends who come around or call on a weekly basis. The few people in my husband's family who are local call and check in, but aren't really involved in helping with the daily responsibilities. My family lives 5 hours away and can not be here to help. My husband sleeps in a separate room now due to needing his own sleeping space. He has bad insomnia as well and can not go up and down stairs easily at this time due to brain tumors. I feel like I have lost a huge part of my life, my world already. I have become a single parent. I now maintain taking care of the house in every way. I miss my husband so much. I feel so helpless for him sometimes as I know that he feels that he has lost control of everything in his world and his life. I am angry that he has to experience this process of dying. I feel for my children as I know that they often feel the loss of a father already too. It is such a lonely road, lonely process for all of us. Looking for continued strength and some hope through this painful process...

Melissa

grandmafay · February 2014

i lost my husband to colon cancer following a six year battle. i am older, and my children are grown. I still have some understanding of what you are going through. Our greatest fear when we hear cancer is losing the most important person in our life. We can't imagine going on without him/her in our life. Staying positive is one thing, but we want to face reality, too. None of us lives forever. Being sure that our affairs are always in the best order possible just makes sense. right now may not be the best time to remind your husband of that, though. He is still dealing with his diagnosis and treatment. Also, he may be right. Maybe everything will look good in May. I hope so. Now may be the time to just support him. New treatments are coming out. People are surviving longer with state 4 dx. some are beating the odds and the cancer. in May, when this round of treatment comes to an end, suggest that you talk about your "affairs." Tell him you didn't want to lose him and that this scare has made you more aware that you can't control the future. That scary things can happen. These discussions are hard in the best of circumstances. None of us wants to think about our own mortality. We also don't want to leave things up to questions. I felt really guilty carrying my husband's advanced directive, medical power of attorney and DNR around with me, but I wanted to be sure I could have his wishes followed if necessary. My only real advice right now is to hold on. Try not to let the worries for the future ruin the now. Not easy. Don't forget to take care of yourself, too. Come here when you need support. Fay

Buzzy2008 · March 2014

In a similar boat

I am in a similar situation. You are absolutely not wrong in wanting/needing to talk about those types of things. My husband is 37 and was diagnosed with a stage IV BRAF mutated form of colon cancer with a large amount of mets in his liver this past November. He is self-employed and let's just say his book keeping skills are not great. So I am faced with the prospect of dealing with this mess if he can't take care of it (or at least part of it) before he gets too sick to do so. (Which is fast-approaching, I'm afraid) Long story short, the latest CT scan revealed new mets in his bones (spine) and possibly his lung in spite of shrinkage in the liver so they stopped the treatment. Now we are faced with the possibility of "no more options" unless they can get his bili down to 1.5. It is at 14 right now. This is a very aggressive cancer and without treatment the dr has given a prognosis of about 2 months at best. I've been holding it together pretty well thus far but the possibility of losing him is becoming very real very fast. It's hard to stay positive when you know the odds are stacked against him. You want to be the cheerleader so your husband doesn't give up. And yet you know the inevitable is coming. AND you feel bad bringing up the "the business side of things". How can he think about that when he's facing his mortality straight in the face? I don't know about you but I feel bad thinking about life after him. That's when I lose it. (and it's usually when I'm alone. I let very few people see me cry) I think of all the things he won't be here for. Just something as simple as knowing he won't be there when I get home from work or that he won't be around to watch the next season of our favorite tv show sets me off. It's those little things you take for granted that you know you will probably miss the most. IT SUCKS!!! (Sorry to end on such a negative note)

new to the cancer journey

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