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My husband won't ask questions

Ellsie
Posts: 6
Joined: May 2011

I have read many postings on here and this is my first communication to anyone. My husband was diagnosed with colon cancer in January of this year. A severe stomach ache brought him to the ER and from there it was a colonoscopy to surgery within a week. My husband has never gone to a doctor for 18 years. he refused to have checkups at all. Surgery went very well and the oncologist was very hopeful that he was cancer free, until, they found spots on his lungs. No liver problems though. we found out after a wedge resection that the colon cancer had moved. He has now had 3 treatments, 5 FU, leucovorin, oxaliplatin and Avastin. Only side effects, a sensitivity to holding cold objects, but other than that he is feeling great!
He does not ask questions to the Doctor. If the doctor says his bloodwork is fine, then that is all Hubby hears. I go to all chemo sessions and almost all appointments.
I have asked the tough questions on the phone with the Doctor and know we are looking at stage lV. I truly believe that my husband has no idea of the extent of the disease.
I feel that his optimistic and calm reaction to all of this may be a very healthy way to deal with it. The power of positive thinking and all that...
Here is my question to any of you that have "been there". Should I continue to go along with my husband's extraordinary calm approach to this disease and assume that this is the way he wants it to be? Do I assume that he either doesn't want to know the "not very helpful" prognosis?
I am trying to be as supportive as I possibly can but knowing the whole picture scares me. Am I correct in thinking that IF this starts to worsen, that Hubby will know and deal with it then??
Would you want to be told?
Any feedback would be quite helpful
Ellsie

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Elise,

Hmm...that's a tough one. I think it's good that hubby is feeling/acting positive about it all- I'm sure that's his way of dealing with it. There does have to be a fine line between being positive and not burying his head in the sand, though. I don't think that you should spell out any statistics to him, though- first of all, most of the listed statistics on the internet are outdated. Also, if he doesn't like to talk about things, it probably means he can only handle so much information at a time & not too much more. I'm glad you go to the doctor's appts w/ him- otherwise you probably wouldn't get much information out of your hubby. Keep going and do ask questions of the onc and other specialists. Maybe try to talk to your husband and see if he thinks going to a cancer support group could be helpful to him. If not, I wouldn't push it. Trying to force someone to deal with things in a way you would deal with them yourself is never going to be easy and probably won't work. My own husband and I deal with things quite differently as well and I have found after many years of trying (sigh and smile), that it doesn't work!
Just keep being there for your hubby and occasionally ask him about how he's feeling, dealing with it all, etc. You may find that at times he'll be willing to let his guard down and will share some deeper feelings on it all. Just listen and be there for him.

Hugs,
Lisa

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

First, welcome to the board and you've got alot of good questions.

Just so you have an idea of who I am - I'm a Stage IV who has had 3 cancer recurrences and have been actively fighting for 7-years.

Myself, I am heavily involved with my own treatment plan and work with the doctors, outline the plan, ask the questions etc. It's my life, so I want and need to be involved.

Now, onto your situation. Your husband's "calm reaction" may be akin to an ostrich putting his head in the sand. He simply may just want to hear what he wants to hear. Simon & Garfunkel wrote a song with the lyrics, "A man hears what he wants to hear and disregards the rest." This could be the case for him. It may be so overwhelming that this is his way of dealing with everything right now. Some of us (man or woman) are good at it while others are not. They do what the doctors tell them without thinking about it.

As a Stage IV, the situation is very serious. I would encourage you to continue going to chemo with him as a precaution. If anything comes up, you could be there to alert the nursing staff. And I would also encourage you to go his doctor's appointments. This would give you a better idea of where you are really at - and it appears to me that you are really his "advocate" as wel as caregiver, so knowing all of the facts, while difficult for you, just might be beneficial in saving his life.

All of this is so new to you both. It's sort of a blur right now. I'm sure he does not get what Stage IV means to him right now. He is probably thinking this will all just go away and I'll just do these things and it will be behind me. Perhaps over time, he will get really dialed into his situation and begin to take a more active involvement in his treatment, his prognosis, and the results that he is given regarding treatments and scan tests, bloodwork etc.etc.

As for your question, "Would you want to be told?" Well, I always did and still do. The way that we attack cancer is to wrap our minds around the reality of this disease, both good and bad, and by doing this, we take a stand against cancer...and by being involved we take some of the control that cancer tries to take away from us. I believe in the "whole truth and nothing but the truth." Running from or pretending that things are ok can get you into trouble. Things with cancer can change so suddenly and so you have to stay on top of this at all times.

This is a great resource for information and support, so I'm glad you are here. We'll walk with you and help you through this as much as we can. There's alot of information overload, so we won't go there today, but just post your questions and one of many will do their best to help you. We've all been there, many of us are Stage IV's and know the ins and outs and the tricks of the trade, so don't be embarassed by asking anything - afterall, this is very new and your journey is already under way.

Just take it one day at a time and for now, watch out for him, he's going to need you now, even if he does not think he does.

All the best and keep in touch!

-Craig

Ellsie
Posts: 6
Joined: May 2011

Thank you for your answers and support! I am so glad I came onto this site. The one appointment that my husband goes to on his own is the "week after treatment" blood work appointment. the hospital is 30 minutes away and he leaves work, runs into town gets the blood work done and leaves 15 minutes or so later. He says that it doesn't make sense for me to go, and is quite firm on that. In the meantime I have no idea of what they are looking at in the blood work or its results, except so far the doctor has said everything looks "great".
I think they look at white blood cell count but not sure. Since my husband is comfortable not knowing all the details, would it be good for me to ask the doctor exactly what the blood work shows?
can you tell me what they look at the blood for?
Laurie

GaryinUK
Posts: 63
Joined: Feb 2011

Ellsie

My partner is now stage v and aged 33years, we are 21months down the line from first dx.

From the first appointment with the Oncologist he has been the same,no questions, he almost goes into a trance, so I ask them, nothing that would set him off further just enough to understand what was said.

The oncologist asks him if he has any questions and I reply.

Does he want to know every little detail, no he doesn't, I have asked him , he says will it get rid of cancer knowing, no it wont.

Do I know what might happen later, no, I have ideas of what might, but no one has said it and as many on here will tell you, nothing is definite.

Support, be his ears and mouth, don't frighten him, go to every appt, every chemo, scan etc, not only because regardless of what he says, he wants you there and I would never trust people not to say something that he mis-interprets.

During a bad clinical trial experience, a doctor started getting ahead of himself and using words that can be worrying. Whilst my partner was having a scan, I was berating the doctor about his communication skills.

Mental strength is important, anyone giving opinions, medically trained or otherwise needs to remember this, some people with cancer 'give up', you will not find those on here though, they give up because someone has told them they are going to die in 3,6, 12 months.
Who are they to say this, fight the fight, they are more wrong than right.

I hope this has helped.

Regards
Gary

Ellsie
Posts: 6
Joined: May 2011

Thank you! I actually wish I hadn't asked what the prognosis was and what stage he was at. My husband is unaware of either of these answers. I think when the doctor said it was stage four ( which i had deduced from research )and 2-3 years.... it was the most terrifying moment for me. Much worse than the initial diagnosis of CANCER. I do not want him to be afraid, or have the thoughts that I have. the ones when we are sitting at the dinner table and our high school aged daughter talks about getting married someday. I smile and chat but at those" bad moments" later I think, what if he isn't there? Thoughts like those are breaking my heart. I have to push those thoughts away, quickly.
I haven't told anyone what the doctor said regarding this "reality"
Our son, living many miles away doesn't have any idea of this prognosis, because part of me says that "the reality" from the doctors is not set in stone,and are educated guesses based on other people's results, but if I know that possibility is there, would our son ( actually my step son ) hate me if I don't tell him. I mean, IF there is a chance that there are only a few years left, and he could have moved home to be around his dad and by not telling him, he chose to remain living far away....
I know my mother in law would worry herself to the grave, literally. She has health issues and is a HUGE worrier. I guess that this is my current inner struggle. Your thoughts on my keeping the negative future possibilities a secret? Are they in fact a "reality" that anyone needs to know, especially if my husband has chosen not to know this himself?
Won't we have a point when my husband and I would both see the actually reality and then communicate it, if he wants to? And 2-3 years is a lot of time to work with, right?

Lovekitties's picture
Lovekitties
Posts: 3320
Joined: Jan 2010

I am glad you found us and hope you will find it helpful to spend time with us.

You know your husband best. In your time together when difficult things have come up has he responded this way or has he been a take charge kind of person? You mention that he has not gone to doctors for a long time. Is there something in his or his family history that has made him avoid doctors?

I think you need to talk with hubby, not about his diagnosis directly, but about how you want to interact on his behalf with the medical personnel. Let him know that you want to be able to ask questions at his appointments with him present and see what he says. If he objects to being present, then you know he is just not wanting to know the details. Some people feel that the doctors are paid well to deal with their illness and therefore don't need to question them.

It might also be helpful for you to seek out a counselor who deals specifically with cancer patients and their families.

The main thing to remember is that there is hope. We have folks here who were given minimal time and were inoperable only to astound the doctors and make vast improvements, have surgery and live well. Anything is possible.

Wishing you and hubby the best possible outcome.

Marie who loves kitties

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

He needs you to help advocate for him. My wife and I would go over questions or issues a coupe of days before every Onc visit. Then we had a list of questions to ask. If I forgot to ask, she would ask the Onc.

Best Always, mike

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Of course minimal information is necessary but beside that I never wanted to know about prognosis or others, l just ask him ,are we doing fine , lasbs are fine? and that's all I want to know! Belive me if he does not want to now more, just live him ,to much information in this disease may be devasting for the patient!.
at least has been my policy lad two years and worked for me any way that's only my opinion as a patient,may be I'm wrong!.
Hugs!

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

My husband is also Stage IV, we have been at this for more than 2 years. At first, he didn't ask much. As long as things were looking good, treatment was working, labs were good, he was ok. As his caregiver and advocate it will be your job to do research, look up the drugs and their side effects, come on here with any questions, and I do mean any questions whatsoever, go to doctor visits and chemo when you can. By doing this if any side effects do pop up you will be able to tell him, yes, lots of people experience that, it takes the stress off.

Your husband may know a lot more than you think he does but doesn't want to stress you out talking about it too much. Both of you know what you are looking at.

As an example some people after a CT or PET get a copy of it and bring it home and view it on their computer. My George has no interest in doing that. Visually looking at the cancer really stresses him out and upsets him badly. So, we go over the results with the oncologist and PA and take it from there.

Take care - Tina

mukamom's picture
mukamom
Posts: 402
Joined: Oct 2010

My husband is the same way....he thinks whatever the doc says goes and he deals with it. I want to know everything, so I know what we are looking at and then I kind of give the info to him in small doses. And it takes awhile for the "new" to sink in. He is 2.5 years into this stage iv, and I guess it took most of the first 2 years for it to register that this will probably never go away. And he is handling that very well.

Take care

Angela

luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

Hi Ellise,
My husband, Jimmy is the same. He doesn't ask and I really don't think he wants to know a whole lot. I am a ct tech, so he leaves all of the medical jargen up to me. I do all of the research and web surfing on the subject. I even suggested that he registers w/either this board or the colon club and he has no interest in it. He did ask me once to show him his ct scan but I told him I would rather his onc show it to him. To tell you the truth I was glad when he never mentioned it again. At the last Dr's visit, one of my comments initiated the onc to ask if we wanted figures and stats on Jimmy's disease. I abruptly said "no" and that was the end of the discussion.

You will see that there are a lot of stage IV long term survivors on this board, so I think hearing the statistics is just not necessary. If your husband isn't asking any questions I think you would be best to just go with that for now and get as much information as you can for yourself.

One more point, as I stated earlier, I am a ct tech so I work in a hospital and the medical community can be very pessimistic, the oncology dept seems to see more of the bottle 1/2 full, but x-ray and lab people always seen to look at the dark side. I never realised that until Jimmy got sick. I told my colleagues once that it is sad that I have to go to oncology to get cheered up - haha. But my point is be as positive as you can and if your husband is feeling good and is positive go with that too and don't let this damn disease run or ruin your life.

God Bless you and your family,

Jan

Ellsie
Posts: 6
Joined: May 2011

Thanks for the advice. I'll just keep him company through this journey and be there for him.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Good for both patient and caregiver:
A Survivor’s Guide to Managing the Emotions of Cancer Diagnosis, Treatment

We all react differently, and there are stages of emotions that
devour us at times.

You need as much help as your spouse/partner does with coping
and adjusting to the new life. Take your time, and savor every moment.

Best wishes,

John

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

As a cancer patient, I was like your husband. I was never so arrogant as to think I could second guess my oncologist or surgeon, so what was the point in going into details? I was going to go with whatever my doctors recommended, anyway. I never wanted to know my prognosis -- what would be the point? My attitude was, let the doctors do their thing (they're the experts), I'll get on with my life as best I can, and que sera, sera.

--Greg

Ellsie
Posts: 6
Joined: May 2011

Sounds like you are quite like him! Thanks for sharing that with me. I won't worry so much now. My husband simply says. " it is, what it is "
I guess that is how he wants to deal with this, and i will honor that.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"husband simply says. " it is, what it is "
I guess that is how he wants to deal with this, and i will honor that."

That's fine, but not making out a will, or deciding on burial, or
cremation, and services.... Or making sure there's enough insurance
to sustain life for -you- after he's gone, etc etc... are things that
should be taken care of -now-, not "if/when it happens".

I prepared for the worst, and hoped for the best. Each day
that passes, doesn't pass without a minute or three of concern
about my future, or lack thereof. I'm a procrastinator from birth,
and I can't manage to change my desire to put off 'till tomorrow,
what I put off yesterday... However, I make the attempt.

So do yourself a favor, and grab the reins; get copies of tests
and procedures. Feel free to see another specialist, taking those
copies with you, and get other opinions. It's not just his life,
it's your life also. You have the need, and the right, to know
what's what, and some sort of a prognosis.

Sure, some of us have outlived the initial prognosis, but don't
forget that a prognosis is made assuming that conditions will
remain the same; change the "conditions", and the prognosis
may no longer be valid. A stage 4 colon cancer diagnosis is
usually a 2-3 year time frame. I was diagnosed as a "3c or 4"
back in 2006. I decided to take the 3c (hey, I had a choice?).

I have been told last January, that I had been a 4 since 2006.

Well... so what? I treated the 3c by my prognosis of 2-3 years,
and did what I could to insure my wife won't suffer needlessly
with unpaid balances, or a pile of papers to sort through.

We bought my wife a new car, so she wouldn't have to be concerned
about me not being around to fix the old car. We sold our house
and bought a house where she felt she would be most comfortable,
and I restored it to the way we both wanted it.

I paid off bills, our home is free and clear, the car is paid for,
insurance is up to date..... so all those things are taken care of.
Not only did we prepare for the worst, but we're enjoying our new
life more now, without all the usual stuff we always put aside 'till
later..

My parents had taken the initiative to pay in advance for cremation
for each of them. When the time came for my mother, things
went smoothly for my father. When my father went, there was
very little (if any) things for me to do; all papers were in order,
no pending bills, the funeral home came, took his body for
cremation the day he died, without me even calling or being
there. (He lived in Ma., I lived in Fl)

I haven't bought a contract for cremation as yet, but your situation
was a good wake-up call for me.

If your OM refuses to face the odds, you'll have to face them yourself
and prepare for it. If he lives 'till 128 years old, bully good for him!
You will enjoy the years even more, not having to be bothered with worries
about getting things done.

So do it. If you've taken the time to make sure you can make
decisions for him when he is unable, and signed the forms that allow
you access to all his medical records, go get 'em; Do it for yourself,
and you'll be doing him a major favor, too.

It sounds like he's scared butt-less and is in denial; that's one of
those "emotional stages" we go through. If he can't muster up
the strength, he's no less a man, he's just in shock. We all handle
things differently, and apparently, you are doing a bit better so far.
So while you still have the strength, get things done.

It's really that important. Cancer kills, and the statistics have
not changed in over forty years. Face that; do yourself a favor,
and face the facts. Once you face it head-on, you can move
ahead, making sensible plans and decisions. And when he
outlives his prognosis, you'll be even more thrilled that everything
was taken care of in advance.

You'll do fine...

I'm wishing the best of the best for you both.

John

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