not sure of my role

7 Posts | Page(s): 1 

not sure of my role

by kak123 on Sat Sep 29, 2018 09:26 PM

Quote | Reply

My husband had a kidney removed in 11/17. a few months later he was diagnosed with inoperable stage 4 base of tongue cancer with mets to nodes with suspicious nodes in lungs. He had chemo and radiation which treated but did not cure. He was never told that he would be cured. Pet scan post treatment showed lung nodes are now masses. He will go for a biopsy next week with results the following week. I go with him to all appointments and sit quietly and ask no questions. He really does not want to know about the poor prognosis. I feel like I am playing some sort of sick game with the Drs. At home there is no discussion of the cancer.....he gets upset and I don't want to do that. I feel trapped in my head, not sure what direction to go in and when. I need to know the truth so I can deal with reality and not my husbands denial. Is it OK to be frank with the doctor at his resuslts visit to ask the real questions? I feel like if I do and my husband does not want to hear the real answers that it would be cruel. I welcome all points of view...thanks

RE: not sure of my role

by jeanssister on Sat Sep 29, 2018 11:03 PM

Quote | Reply

First, I'm sorry you're going through this. Feeling like you have no voice in something that is really a team effort is difficult, and maybe unnecessary(?)

One option is to make sure your husband signs off (literally) on you being able to talk to the doctor outside of when your husband is present. This is a common thing, and allows you more information than you might otherwise gain, plus the chance to speak one-on-one and ask questions. 

I go with my sister to her appointments at Duke University once every two months.  I fly in from Denver, and she drives in from South Carolina. There, I'm able to ask questions and give the doctor my point of view on how my sister--who has a grade 4 brain tumor (Glioblastoma)--is getting along, what she (my sister) might need; I ask lots of questions. At Duke's Brain Tumor Center, they don't talk about "how long." They approach treatment at the place where you are at any given moment, and ways to provide something that might work better if necessary. Or so that's been our experience. 

I don't mean to sound like your husband's feelings don't matter, but I do want you to know you DO matter, too. You are the one helping him get through this. You are the one who may eventually be his caregiver. You should not suffer in silence alone. It is okay to speak up, even in his presence. You don't have to ask the doc about life expectancy in front of your husband, but you can get lots of answers. Life expectancy is a statistical guess, btw, not a hard and fast rule.

Usually a nurse is your best friend. Develop a relationship with his oncology nurse. 

I have been reading lots about great things for treating lung cancer. Ask your doctor what studies are going on and how your husband might be able to take part in one. You can also look yourself at clinicaltrials.org . I always ask for a copy of any test results, including scans, biopsies and MRIs. Then I head straight to the internet and look things up. Through my local librarie, I can get access to great medical journals. I don't understand everything I read, but I gain some knowledge so I can ask the doctor better-informed questions.

I wish you the best!  Beth

RE: not sure of my role

by Loves2Fly on Sun Sep 30, 2018 01:38 AM

Quote | Reply

I am sorry you are having to deal with this.

My husband doesn't want to know all the details, and he is not up to some of them, but for my own mental health, I do need to know what is coming. For me, it helps me know what to ask as well as be able to be strong form him.

Great advice from jeanssister. 

Having POA for healthcare is really important. It lets you get copies of tests, etc. I get copies of it all, since even in this electronic world, one place can't seem to get records from another. A friend faced difficulty when her husband was unconcious, and she was not able to get his medical records to the treating Dr. as soon as she could, as the other Dr. refused to release them to her without his permission - although how they expected him to give it in a coma, she never was able to get out of them. After many critical hours, and phone calls Dr to Dr, they finally gave them to her.

I take a spiral notebook, and write down everything the Dr. tells us. Like jeanssister, I look things up when I get home. I write my questions as well.

Nurses and Dr. assistants can be a lot of help. Usually you can get their phone or email, and let them know that while HE doesn't want to know, you do, and how can you communicate easily. SOmetimes the nurse will take him out for "weight" or something simple, giving you a few minutes with the Dr. Our Dr. will give me a "look" when he is going to tell me something sort of "veiled" and then ask me if I "understand". I also ask questions that are carefully worded and he knows to listen for them. I usually start with "Dr. ___ I have a question....." and he knows to look beyond it. He and I had a discussion very early on in treatment and so we communicate well.

Sometimes these boards are also helpful as other that have gone through the same type of cancers can help you or point you in the right direction on research or medical journal quality items. Still, watch out for the quacks. :-)

I also had a dear friend that I could talk to about the hard stuff. I wrote things in a journal, and just putting it down on paper (or computer as it were) helped me deal with all of it. I kept files on each thing as it came up and used them as references. That really helped me when I felt trapped in my head with all the things hitting.

It is possible to have a discussion with your husband to say, "I understand you don't want or need this info, but I do, so I can be better to help you. I won't bring things up unless you ask me."? Mine was ok with that, but I am sure there are many that might not be.

I found this site that I found helpful for researching various things. https://www.ncbi.nlm.nih.gov/pubmed Use the search feature on whatever you are looking for. I usually focus on terms the doctor uses.

RE: not sure of my role

by genemyers on Sun Sep 30, 2018 05:38 AM

Quote | Reply

The CancerCare foundation is a non-profit that provides free phone counseling and community referrals to help caregivers like you. They can give you free one on one support from a master’s level social worker. They can also refer you to supporting services in your local area depending on what your needs are.   

CancerCare 

800-813-HOPE (4673)

https://www.cancercare.org/tagged/caregiving

RE: not sure of my role

by Sdurnell on Thu Oct 04, 2018 05:41 PM

Quote | Reply

Kak,

I suggest that you go to the head and neck section of this site for more information.  Those of us who've had experience with this cancer (some as patietns, others as caregivers) can speak with some authority about what we've experienced.  Of course we are not medical experts, but we can answer some of your questions.

Other than that you can perhaps get your husband to sign a waiver allowing the doctors to talk to you about this cancer. This way you can know and he does not have to.  I understand your difficult position, but I also know that if it were me I'd want to know.  This option might put some extra burden on you, but it also might help you cope.

Has anyone talked to you about immunotherapy drugs, like Keytruda and Opdivo?  They only work in a minority of patients, but for some they are very effective.

Wishing you both all the best,

Susan

RE: not sure of my role

by kak123 on Thu Oct 04, 2018 06:23 PM

Quote | Reply
What a wonderful support site this is. I appreciate all responses to my husbands very complex issues. There are so many Drs. involved and additionally the remaining kidney is not functioning well so treatment choices are limited. Thank you for the support

RE: not sure of my role

by bobss396 on Fri Oct 05, 2018 04:22 PM

Quote | Reply

My late wife Barbara took a head in the sand approach to her pancreatic cancer. She was a good enough patient, went along with anything her doctors or oncologist suggested.

But she did not want anyone outside of her doctors giving her medical advice, which I understood and ran interference when people tried that on her. She didn't want me looking up anything when I suggested alternative treatments. Her dad was a doc-wanna-be and I had to cut him off at the knees a few times.

She didn't want to discuss her cancer, no what-if discussions ever. There was a lot we should have talked about but never did. Fortunately we had our ducks in a row, although I should have known more about our banking up front, but I was able to get a handle on it after she passed.

I had total access to anything medical information, POA and in charge of her HC proxy to see her wishes were carried out.

So what to do? I made sure she got to her appointments, had her medicines, I cooked, cleaned and on days I was working, made sure someone was home with her and had food for them.

For a long time she was able to make her own health-care decisions, the day came about a month before she died where she was no longer able to do that. So at that point I was glad I had been paying attention all along. If you have a loved one in a facility, hospital or otherwise, seek out a social worker if you need some assistance, they have seen it all.

Don't forget to take care of yourself and prepare mentally for the inevitable if it goes that far. She had taken our wills out and also our life insurance policies, so they were readily available when I needed them. It is a lot to process mentally and all you can do is make the best decisions possible, if there is close family, get them to help if they can. 

7 Posts | Page(s): 1 
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.