just want someone to listen

32 Posts | Page(s): 1 2 3 4  Next 

just want someone to listen

by overtime on Mon Oct 23, 2017 04:04 AM

Quote | Reply

My husband was diagnosed with rectal cancer in Nov. of 2016. He had what is called a Tems procedure and the cancer is apparently gone, but he developed cancer in the colon which has since metastasized to the liver and lymph nodes. It is a stage 1V and he was given 2 and a half years to live. He had surgery to remove his secum and is on his 9th chemo treatment. It has been a roller coaster ride for both of us, and all this is so new to us. So much to learn. He was in the hospital for most of the first 4 treatments with infections, severe diaherra, severe vomiting and severe pain. He had to visit his family doctor a few times and he feels that the doctor has changed towards him. He feels the doctor doesn't check him out and says, "The cancer is doing that" and the doctor is not the same towards him. He feels that his oncologist is negative as well. When he told her about a month ago, after the tumors shrunk in his liver and colon that he is going to beat this, she repeated all the statistics about the cancer survival and didn't have a positive word for him. We see her again after his tenth treatment and a cat scan. 

For me as a caregiver, I had to take long-term disability from work and I have been feeling so isolated and abandoned from my co-workers. We are both so emotional and do a lot of crying. My husband tries to help out around the house, but I know he is always so tired. He worries so much about me. We both have so much stress right now and wondering about the future. I am hoping I can just vent my frustrations to this forum and have someone who is going through this also to respond. 

RE: just want someone to listen

by imyaya on Wed Oct 25, 2017 02:24 PM

Quote | Reply

Dear Overtime-  I am listening. Please do something for yourself. Maybe you could go back to work part time just to get away.  Don't let his cancer suck the life out of you.  People on this forum are so good and thoughtful.  Just wanted you to know I care. Gigi

RE: just want someone to listen

by millerbetsyj on Thu Oct 26, 2017 03:56 PM

Quote | Reply

So sorry.  Been there.  There's so much written about the cancer "journey" (how about instead of "journey" we call it what it is--a prolonged stare at hell)?  But not so much written about the raw, enduring STRESS of it.  At a time when I wanted to be the strongest, most positive, loving wife in the world, I was a complete mess and our marriage--so strong before that we had been called "peanut butter and jelly"--was never so STRESSED.  

One thing that does help a lot is having a supportive medical team, and you don't have that.  Find another.  Get copies of all the records, and cds of all the scans, surf online and find another oncologic team.

Another thing that helped ("bigly" as our president says) was caringbridge.org , which is a website you set up to share whatever information you want to with your friends and family--all at one time, instead of answering their same questions over and over every time they call/visit/ask.  I found that repetition to be utterly draining, esp when no good news for weeks or months on end.  You post there and ask everybody to please just check the site; they can also respond, which is a real boost.  Before he eventually passed, we had over 24,000 hits to the site and hundreds of kind words, offers, prayers, thoughts.

And the "take care of yourself" advice sounds trite but it's true.  Decide what your worst chores are and figure out ways to delegate them:  if you can't afford a housecleaner once a week, hire one monthly.  If you absolutely hate cleaning your bathrooms, ask one of the many friends or family who constantly ask what they can do to help to come a couple times a month and do it.  If youu can't bear sitting next to him during chemo, ask a friend (or minister?) to set up a schedule so he has company (assuming he wants it) that isn't you.  While he's at chemo, go get a pedicure.  There are lots of ways to make what you're going through easier, but none that will make it easy.

Thinking of you,

Betsy

RE: just want someone to listen

by Possibilities on Thu Oct 26, 2017 04:27 PM

Quote | Reply

Hi Overtime,  I agree with the other posters.  First, find some new doctors!!!  Your husband is going through the most devastating time in his life and needs support from his medical team.  If he's not getting that, definitely time to move on!  There are some really, really good doctors out there so no reason to stay with the ones you have.  His doctor's attitudes can make all the difference.

Second, pay attention to the message about taking care of yourself!!  Your attitude will also have a big effect on your husband and if you're not taking care of yourself, you can't help him.  Do NOT feel guilty about doing things for yourself and enjoying life!!!  That will help him feel better about everything, believe it or not.  He will respond to your energy and vice versa and it becomes a downward spiral unless you put the brakes on.  Make everyday count for something.  He's still here right now!  Maybe he will beat this, maybe not, but don't spend the time "dying", live!!!!  Make lunch dates with your friends and family; don't isolate yourself.  Your husband doesn't need you there 24/7 and could probably use a break as well.  Does he have any friends that could come visit while you're out?  Does he have things to keep himself occupied?  Crafts?  Puzzles?  Games?  Hobbies?  Yes, there's days when I just want to lay in bed too but even then I'll surround myself with good books and magazines.  Find something to be happy and grateful about each and every day.  

I read a statistic that said cancer patients on antidepressants actually live longer than those not on them.  Whether or not there is any truth to that, I don't know, but this might be something that both of you should look into.  It's not about feeling drugged, it's about finding a way to cope with the situation and still live a good life.  I went on an antidepressant after the first year of non-stop crying and it has done wonders for my life.  I actually have a life now!

There are many, many stories out there about miracles happening and cancer disappearing even after the doctors told them there was nothing they could do.  Everyone is different.  Live your lives to the fullest no matter how much time you do or don't have left!!!  Best wishes!!!!!

RE: just want someone to listen

by colleen01 on Thu Oct 26, 2017 07:51 PM

Quote | Reply

Hi overtime. This is the first time posting for me as I had so much trouble joining . I wanted to respond though as my husband and I feel the same way. I know we shouldn't be crying and boo-hooing but what we are facing is pretty much inevitable. I'm not writing the whole story now but he was diagnosed Nov of 16 with stage 4 colon cancer with mets to the abdomen and lungs. Usually it goes to the liver which our Dr said is better as they can cut tumors and the liver will regenerate. My husband has a colostomy bag, hardest thing he has ever dealt with. It's broken open and many other issues. Hes had about 22 treatments so far and is getting more and more tired, but when they cut back he developed 6 new nodules in his lungs. We really have almost no support, crappy extended unloving families(siblings and so on) we have 4 adult children who do call and such. Our neighbors all keep to themselves and we stopped going to church a while ago. Still the people know and they could call and offer support but they don't. My husband literally broke down crying the other night that 'no one calls' and he can't understand it. Really sad and difficult as we know what we are facing. We pray, and read and try to do the best we can. I have CML leukemia which was diagnosed 3 yrs. ago. It's under control with daily chemo pills but I get so tired. One day at a time. I know God cares, just little things after I cry out to Him for help, He shows me He is there and loves us and is guiding us as we plead for Him to.  My father is 92 in the hospital so I'm going in all directions and am ready to lose my mind. I can't even handle our 4 yr old golden retriever any longer. She is so demanding and hyper and picking up poop as you know your husband is dying is the last thing on earth I want to do. Maybe we can talk . I live near Pgh,Pa. Are you allowed to tell that?

RE: just want someone to listen

by phils1950 on Fri Oct 27, 2017 12:20 AM

Quote | Reply

I totally understand where you are coming from.  My 47 year old son passed away in August from recurrent colon cancer that had metastisized to his liver and lungs.  His chemo was working well for one year and then just quit working.  His oncologist started a new chemo drug and he did radiation therapy to try to shrink the tumor in his lung.  Needless to say it didn't work.  However our oncologist, family doctor were very supportive and listened to him and did try their best to help him.  Our problem was with the pulmonary doctors and anyone else involved in his care.  Pulmonary doctors from the very beginning would tell him we will keep you as comfortable as we can. When you encounter these doctors and their attitudes it just makes you wonder why they chose this profession.  It is difficult enough to get through a day let alone deal with these attitudes.  I am also a stage 4 colon cancer person and I am dealing with a brain damaged husband who requires 24 hr care.  I do this by myself as I don't feel anyone can care for him better than me.  I hope you can find a doctor more suitable to your needs and can meet those needs satisfactorily for you.  

RE: just want someone to listen

by overtime on Fri Oct 27, 2017 01:30 AM

Quote | Reply

Betsy

So sorry for your loss. May you be able to find solace in the days to come and to find acceptance and love.

Thanks for the encouraging words and ideas. We live in a remote northern area and have to drive over five hours to see a specialist so it is not that easy to switch doctors. What a neat idea about the caring bridge. I'm wondering if that is worldwide or just in the US? Yes, the repetition of calls truly takes the good out of oneself. I have a large family and so does my husband. 

Take care

RE: just want someone to listen

by overtime on Fri Oct 27, 2017 01:42 AM

Quote | Reply

Possibilities

I will start taking advice from those posts. I am not one to ask for help or even accept it when offered, but last week a grandparent I met from the school where I work called and asked how I was doing. She asked if I liked soup and I said yes. She said, "Great, I made one and will bring it over to you." I can't believe I accepted it and it was so delicious and I didn't have to cook. 

I am glad that you mentioned about my husband responding to my energy. Lately, I have been so angry, that sometimes I am scared of who or what I am becoming. I snap at everyone and I am terribly irritable. I was never like that and my husband is dumbfounded with it all. 

He has friends who visit at times, but where most of them live in camps outside of our little town, he doesn't see them often. When he is well enough he will go for a coffee for about an hour. That gives both of us a break. He makes walking sticks that keep him busy, but he can't sit or stand for long periods of time because of the pain he is in. Again, his doctor is hesitant of checking where the pain is coming from. He has started to take cannabis oil which seems to calm him a little. He tries to stay so positive and he is so good to everyone. I strongly believe that a miracle will come for us. 

Thanks

Overtime

RE: just want someone to listen

by overtime on Fri Oct 27, 2017 02:13 AM

Quote | Reply

phils1950

I am so overwhelmed with your loss of your son and for you and your husband. I feel so blessed and honored that you shared this with me. I hurt for your pain right now. You must be a strong woman and if there really is a heaven, I have no doubt that there will be a place lathered in gold waiting for you. I just wrote a beautiful song for my husband, I am just working on the music for it. I think it has helped me feel a bit better. How are you able to keep up with all you do? Do you have support or respite? 

I will sing the Strong Woman Song for you. Please continue to write.

RE: just want someone to listen

by lou285 on Fri Oct 27, 2017 04:19 AM

Quote | Reply

This is the best place to vent. The trouble with people not coming anymore is they just dont know how to handle it and what to talk about instead of just being themselves. 

My husband is now dealing with his second cancer. First was stage 4 kidney with 6 months to live, now 6 yrs later he has a soft tissue sarcoma. Waiting on his radiation to start next week.

All positive here, its the only way to be. I am my husbands carer also.

32 Posts | Page(s): 1 2 3 4  Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.