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No surgery.....feeling lost

refusetolose's picture
refusetolose
Posts: 10
Joined: Jan 2014

We just met with a surgeon yesterday. He said that since Mike is responding so well to chemotherapy that they will not be doing surgery at this time. I am thrilled about this, but Mike is mad becasue he wanted them to go in there and just cut the tumor out of him. He is getting so angry with me. I try and be supportive, but he tells me "I am the one going through this, not you." It is really hard to not rake any of this personally. I know this is not him, because he never gets this angry. He is a calm, loving, easy going person. I do not know how to help him right now. He is just so frustrated and so angry right now. But he does not like when I give him his space either. I am just lost. I do not know what I can do to help him.

jen2012
Posts: 1189
Joined: Aug 2012

My husband was diagnosed in August 2012, had chemo Sept through March and then surgery in April. Surgeon said that he had a hard time finding where the tumor was because he had such a good response to chemo. I think waiting, if the chemo is working, makes sense because they have less to cut out.

I get the moods! My husband is the same way and it is very difficult. We can understand why, but when you are exhausted from caregiving around the clock and then getting snapped at, it's not easy! Try to gently explain how you feel when he does that. I'm sure he's terrified , angry, depressed ...it just comes out on the one closest to him. The steroid hes probably getting during chemo doesn't help and if he's on any pain killers , that will contribute too. Are you able to talk to his doctor? If so, suggest he/she talk to him about an anti depressant if he's not already taking one.

Stay strong...this is a great place to come and vent to those who understand.

danker
Posts: 731
Joined: Apr 2012

You can always get a second opinion!!! When I was unhappy with my oncologist, I fired him and got a new onc that I love.  You can too!!!

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I think it is better to do the chemo first,then the surgery,then there is less to cut out.I did chemo first for my liver tumor,and it shrank down to almost nothing so there was less to cut out.That made for a quicker recovery.He is probably feeling depressed when he thinks of the stats,I know I did.But everyone has to learn that everyone is different.He just has to realize that as long as he fights,he has a good chance.Good luck.

Trubrit's picture
Trubrit
Posts: 1345
Joined: Jan 2013

One thing I didn't know before my surgery was that when they cut the tumor out, the cancer cells can escape into the abdomen and attack other organs.  They only like to cut them out when they are going to cause real problems. When they hit them with chemo and shrink them down, then cut them out, the less chance of the cancer spreading. 

That might help Mike a bit. 

But as stated above, you can always get a second opinoin. Or, go back in and ask the pros and cons of doing surgery before or after. Arm yourselves with tons of questions (I'm sure you probably are). 

annalexandria's picture
annalexandria
Posts: 2184
Joined: Oct 2011

and it's one that most docs don't really discuss or prepare patients and caregivers for properly, imo.

There is just so much turmoil and fear, and it's hard to share it with other people.

I know it's a long shot...but would he be willing to talk to a counselor?  There was a social worker attached to my doctor's office who was really helpful.  She gave me a lot of practical tips for coping.  And it might help you too as a caregiver to talk with someone who has experience with cancer.  You could check with your husband's doctor to see if they offer something like that.

Another possibility to consider is the role the chemo itself and the meds given for side effects may be affecting him.  If he's on steroids, for example, those can cause significant mood problems.

How much longer does he have to do chemo?  Hopefully he has a clear end date to look forward to.

And as others have said, he can certainly get a 2nd opinion.  I would suggest talking to a colorectal surgeon if you can.  Being proactive in this way, whether it confirms the oncologist's opinion or not, might make your husband feel a little more in control of the situation...being utterly out of control as we are when we get cancer is scary stuff for most of us.

Hang in there, and keep us posted!

Hugs to you both~AA

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

I wanted to add a little something that I found helpful when my husband was on his cancer journey.  

I discovered early on that no matter how compassionate or loving I was ... what your husband stated is right and is important ... the fact is ... he is the one going through this, not you. In my opinion, that is a distinctly lonely and isolating journey even with a supportive loved one by their side. What you are seeing is your calm husband dealing with cancer and yes, it makes him angry, frustrated, scared and it may make him feel that often.

What I started doing was having a time, I chose once a day, when I would sit with my husband and give him the rock.  Before, you think I am nuts let me explain that the rock was just a smooth stone that we used for family discussions. Whoever had the rock could speak and not be interrupted.  So, once a day I would take the rock to my husband, give it to him, and tell him that for as long as he wished he could have the rock without giving it back to me. He could speak about whatever was on his mind, however dark or angry, without interruption or without me trying to provide solutions for everything. During this time I let myself absorb his feelings and then I could release them afterward.  This is starting to sound very new-agey and that is not really my point ... I guess my point is that the one that does not have cancer does have a tremendous responsibility, in my opinion, to not expect too much as we cannot possibly know what it feels like.

Sometimes, I think as caregivers we try to make everything better.  But, the fact is you can't make everything better ... but you can listen, just simply be present, listen, and do not judge as there is simply no right way to go through this.

The other thing I tried to bear in mind was the idea that oft times when folks behave the worst, is when they need us the most. It is a bit like walking between raindrops, I know.  Of course, you do not have to accept cruelty in anyway directed at you.  The goal is to always try to redirect it to the cancer.

Having been where you are ... I wish you courage and strength.

Peace. ~ Cynthia

Trubrit's picture
Trubrit
Posts: 1345
Joined: Jan 2013

What a truly inspirrational post. 

Thank you, Cynthia.

janderson1964
Posts: 1535
Joined: Oct 2011

Excellent post Cynthia. You described my feelings as a survivor exactly. It can be really lonely even around the ones closest to you. I think you must have been an awesome and understanding caregiver to your husband. However I also realize that caregivers have thier own uniqui fears and feeling of isolation that survivors dont experience. I have seen that helpless look of pain in my wifes face far too many times. It is just heartbreaking for me. Far too often the survivor gets all the attention from friends and family while the caregiver gets neglected.

Phil64's picture
Phil64
Posts: 421
Joined: Apr 2012

After a lot of reading I have done (I'm Stage IV), my impression is that surgery is preferred over chemo when trying to eliminate cancer. If this were me I would get a second oppininon.  Also, I am only sharing my oppinion, based on my reading. I'm not a medical doctor by any means.

And sorry about the snappy / grumpy part of cancer.  I know my wife would tell you I've had many grumpy moments since my diagnosis. As you know it is challenging to deal with cancer...  Maybe that is why we are called patients?  Because you need to be paitient with us? :-)

Love and Light to you.

Phil

refusetolose's picture
refusetolose
Posts: 10
Joined: Jan 2014

Thank you for the words of encouragement and support. Mike actually handles the chemo very well. He does not get sick from it, unless he eats pizza, which is the only thing that has made him get sick. He does not take any medications, besides dextamethasone as prescribed after chemo. It just breaks my heart when he gets angry and frustrated because that is not in his nature. I know not to take anything personally when he is angry because he is fighting. As for the surgery, the oncologist, surgeon, and radiologist all agreed that because the chemo is working so well, and because Mike tolerates it so well, they do not want to stop it to prepare his body for surgery and for the recovery time. They think that it could do more harm than good because he has a few spots on the pelvic bone that may be cancer. When they go in and do surgery they want to make sure they get it all and with those questionable spots on the bone they know they will not be able to. So, right now chemo is our treatment plan. We have no end date to look forward to. We are apart of a study, so chemo is scheduled 8 weeks at a time and then a rescan. This next scan is in March and will mark 6 months of treatment. We are hoping to have some sort of game plan then.

annalexandria's picture
annalexandria
Posts: 2184
Joined: Oct 2011

that's tough.  I really think it will help if you are given more details on this in March.  Again, it's that being out of control feeling that I think is hard for many of us.  And dexamethasone is a steroid, and duplicates the hormones released by the adrenal gland (the "fight or flight" stuff").  So although that is probably not the only issue here, I suspect it could be part of it.  You aren't the first person on these forums to mention some pretty drastic personality changes (and not in a positive direction either) while on that medication.

Hugs to you both~AA

Nana b's picture
Nana b
Posts: 2777
Joined: May 2009

I would want the surgery and so would my ONC.   The surgeon didn't want to do my liver resection because he couldn't see the tumor   He actually did scans to try and fine a tumor and maybe ease his kind. I don't know but he found one and when he cut the liver he couldn't find the third met so he took out 10% more! when he opened it up the tumor was there. 

 

I would demand  surgery knowing what I know now.  It's in writing, the best bet for recovery and a CURE (even if that means remission (wait and see) is to cut it out. 

 

Just saying...

magillilnb's picture
magillilnb
Posts: 37
Joined: Feb 2014

The importance of having a doctor that you respect and trust cannot be denied.  It's easier to heal when you feel you have allies. I know your husband probably won't want to hear this, but attitude can play a big part in his healing. It's important to stay positive and upbeat and view yourself as a warrior fighting a battle against cancer. You must stay strong. There is a lot of evidence that the mind plays a big part in healing. If all his energy is spent being frustrated and angry, it may be inhibiting his natural response to heal himself. You might want to get Bill Moyers book, Healing and The Mind.  If your husband likes to write, you might suggest he do that to get his feelings out. I have been writing a blog, http://realnittygrittyprettyboyrhoid.blogspot.com/ and it's really helped me. I get good feedback from readers and that helps me, too. Living with cancer is not easy, but it's easier if you're kind to yourself and others and fight the real enemy, cancer. 

geotina's picture
geotina
Posts: 2047
Joined: Oct 2009

we sometimes get the brunt of the anger, but thats okay, we are tough and can take it.  If Mike starts getting to you this is what worked with George.  I would give him a kiss on the head/forehead, say something like I was going to check laundry, and he can yell his frustrations when I get back or at anytime for I know it is just the cancer talking.   Believe it or not it worked and he would open up a conversation or just say he was sorry.  But really, it is the fear of the unknown, the chemo racing thru their bodies, the medications, frustration all caused by cancer that is talking and you are there so you get the frustration.   It is ok, you will get through it.  You can also try just looking him in the eye, giving him a big sloppy kiss and saying those words that mean so very much, "I love you and I'm not going anywhere".   That can be the best medicine in the world.

Hang in there - Tina

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