Doctors in family not helpful, is this normal?

GingerMay · September 2016

Wow, does anyone have doctors in your family who offer any wisdom or insight beyond what your doctor provides? In my experience, the answer is NO and I wonder if they purposely take a hands-off approach?

The situation is my husband got his diagnosis two weeks ago. His sister and brother-in-law are both oncologists at a highly regarded hospital a few hours away. The first person my husband called after getting the diagnosis from his doctor was his oncologist-sister. He took his phone outside and spent 30 minutes talking to her. He did not tell me what they discussed. However, he said a few days later that his sister did not know of anyone she would recommend to him even though her hospital is ranked higher than the one we have locally. He said "she thinks our hospital here is OK, so I guess I'll just stay here." Is it odd that his sister would not put in any effort to get him into a higher-tanked hospital?

When the test result first showed a "shadow", that they wanted to investigate, his sister told him that it could be nothing. It turned out to be a tumor. Her statement seemed wrong. Is it odd that his sister would not inform him of any liklihood that "shadows" are usually tumors?

The doctor in the family does not seem to offer anything that non-medically trained people do.

My in-laws both died of cancer, and it was her as the oncologist in the family who communicated status to the family, and accompanied them to doctor appointments. Her communications were very general, and I was actually shocked when they passed. I realized even with all of her "help", they both died shortly after diagnosis. Shouldn't she have been able to warn the family of what should have been a very obvious terminal condition?

I asked her husband, who is also an oncologist, about the in-laws medical conditions. He laughed and said "Oh, so they don't tell you anything either". He said his wife (my husband's sister) did not share any medical details with him regarding the condition of her parents. I would think she would have wanted some dialog with her husband to at least share thoughts on treatment of her parents.

I really wonder about this sister of my husband's with her oncology specialty. Is she not knowledgeable? Or, is she "playing dumb" because she is unwilling to get involved?

Any ideas or similar experience from anyone?

Noellesmom · September 2016

Actually

I think this is fairly typical. There is some kind of code that prohibits them from treating their own family members.

Her lack of sympathy, though, is sad. Was she always this way?

GingerMay · September 2016

Noellesmom said:
Actually
I think this is fairly typical. There is some kind of code that prohibits them from treating their own family members.

Her lack of sympathy, though, is sad. Was she always this way?

Just seems inappropriate

Yes, she has always been that way. Lack of sympathy. Not being "tuned in" to others emotions.

When her father passed away (my father-in-law), she had his gold teeth removed, then sold them for money. I heard of people doing this who needed money, but she is a doctor and nobody needed the $300. To me, it showed a complete lack of respect for his remains.

During a conversation recently on whether someone should purchase a house where there had been a bloody murder she replied "Yes, I would buy it as long as they cleaned it up."

I think she is missing a moral compass. I've never been able to be close to her ...

Noellesmom · September 2016

What?

Pulled his teeth? Here that is considered desecrating a corpse.

You've lived your lives without her empathy. I wouldn't trust her, anyway.

GingerMay · September 2016

Noellesmom said:
What?
Pulled his teeth? Here that is considered desecrating a corpse.

You've lived your lives without her empathy. I wouldn't trust her, anyway.

Thanks again, Noellesmom

Just taking a moment to thank you again for your responses to my posts. I find myself browsing through these discussion blogs most of the time these days, looking for information, looking for solace.

My husband had his surgery. It was more involved than I thought. I browsed websites for info and thought I was prepared. My husband said he knew it would be awful, and he had no alternative so he kind of blocked it out. When the surgeon gave us the details, I felt like it was a punch in the gut. I told him I was proud of his courage and that I loved him, and off he went.

His sister (who is an oncologist) showed up in the waiting room. My mother was there to keep me company during the procedure, but my SIL showing up was a surprise. I thought she should have called me just as a courtesy. I hugged her, and told her it was nice to see her. She proceeded to take a seat across the room from my mother and I, and paged through a magazine the whole time. I cried while my mother told me things like "we'll get the best doctors on this" and "I know it's hard, but people find strength when they need to." His sister remained un-involved in the conversation, never offered any medical insight and never offered any emotional reassurance.

When the surgeon came out and said the surgery went well, his sister listened, then went home. If his sister did not talk to me, did not see her brother after surgery, and did not have any questions for the surgeon, why was she there? She wasn't there for me or her brother, then what was she doing there?

My husband's parents died a few years ago, so his "family" only consists of 2 sisters now. Unfortunately, they have shown to me that they are clueless at interpersonal relations. I could give examples that go on and on, this is just one instance.

I know my husband wants them in his life, so I say nothing. This is not about me, not about his sisters, not about my family either. I focus on his needs.

In the days of his ongoing recovery, I take on all the day-to-day tasks from him that I can.... make his follow up appointments because I know he's too tired to talk on the phone, deal with household chores, get the cars repaired, pay bills, do laundry, take out garbage, check his temperature in the night, help him get dressed, clean the house, still send out birthday cards to friends, keep up the normal stuff.

For the people undergoing treatment, bless you and may the heavens give you strength. For the caretakers, bless you too. It has changed my life in many ways. Walking through the hospital, sometimes now I just smile at people as I pass them. It lets them know they're not invisible and sometimes that is enough to get someone through the day.

Noellesmom · September 2016

It does change one's perspective

Don't forget to take care of yourself, Ginger. Others will help take care of your husband (oncologist staff) but you need to take care of yourself.

Your SIL - I have no idea why she showed up. Don't spend any energy trying too figure it out. Glad your mom was with you.

Hugs, Ginger.

zx10guy · October 2016

Ginger,

Ginger,

To give you another data point, my brother is a PA. When I was first diagnosed, it happened during the Christmas holiday. My brother was still going to school at the time for his PA but on break. He was wonderful during that time. Went to all of my appointments, asked questions. Looked at my scans and spent a lot of time with me when I was at home, at the hospital when I had surgery, and afterwards. He had to cut back his time with me when his school started back up and I understood that. Fast forward a few years. He's a PA now and I had a recent issue where cancer was rearing its ugly head again. My CEA tests were highly abnormal. I asked if he would look at my CT and PET scans along with some pictures I had of my colonoscopy. He sounded on the phone like I was really bothering him. He reluctantly agreed to have me over after changing his work schedule around. I told him if it's too much of a headache for him to not bother. I just wanted another opinion as my oncologist was being too positive about this being not a big deal. We met he looked at my scans, took a picture of my colonoscopy pictures, and gave his opinion. He said he would show the colonoscopy picture to one of his colleagues more versed with GI issues than he. I never heard any follow up. Granted my brother and I were never really close but how he was reacting when I first was diagnosed gave me some hope things have changed. Well I guess things are back to the way they were before my initial diagnosis. It's been about 2 months since my recent surgery. Other than a visit at my home the day I was discharged, I haven't heard from him since.

And I want to say another thing. You're being a really great caregiver and wife. Your husband is very lucky. I wish I had a little bit of that support you're providing him. My wife before she was actually my wife during my initial diagnosis was pretty good with being a caregiver to me. With the recent situation, I've been left to fend for myself for the most part.

GingerMay · October 2016

zx10guy said:
Ginger,
Ginger,

To give you another data point, my brother is a PA. When I was first diagnosed, it happened during the Christmas holiday. My brother was still going to school at the time for his PA but on break. He was wonderful during that time. Went to all of my appointments, asked questions. Looked at my scans and spent a lot of time with me when I was at home, at the hospital when I had surgery, and afterwards. He had to cut back his time with me when his school started back up and I understood that. Fast forward a few years. He's a PA now and I had a recent issue where cancer was rearing its ugly head again. My CEA tests were highly abnormal. I asked if he would look at my CT and PET scans along with some pictures I had of my colonoscopy. He sounded on the phone like I was really bothering him. He reluctantly agreed to have me over after changing his work schedule around. I told him if it's too much of a headache for him to not bother. I just wanted another opinion as my oncologist was being too positive about this being not a big deal. We met he looked at my scans, took a picture of my colonoscopy pictures, and gave his opinion. He said he would show the colonoscopy picture to one of his colleagues more versed with GI issues than he. I never heard any follow up. Granted my brother and I were never really close but how he was reacting when I first was diagnosed gave me some hope things have changed. Well I guess things are back to the way they were before my initial diagnosis. It's been about 2 months since my recent surgery. Other than a visit at my home the day I was discharged, I haven't heard from him since.

And I want to say another thing. You're being a really great caregiver and wife. Your husband is very lucky. I wish I had a little bit of that support you're providing him. My wife before she was actually my wife during my initial diagnosis was pretty good with being a caregiver to me. With the recent situation, I've been left to fend for myself for the most part.

Thanks, I guess it's not ususual

So I guess it's not unusual for medical professionals in the family to stay somewhat removed.

What I've concluded is that regardless of what the doctor in my husband's family says it comes down to the doctor's opinion that is treating him and what the test results have shown. That is what has proven to be accurate. That is what provides me with a point of clarity during a time that is "foggy" and emotional. Personally, I don't think my husband's sister has added any medical value or enhanced his outcome, but rather she is an emotional crutch which he is leaning on very heavily. (And she seems to love it. She does not talk to me at all, and I am sure she gets an ego boost feeling like her little brother looks up to her and is seeking her wisdom. I do not believe such praise is deserved, but I try not to focus on her.)

Anyway, I hope you are doing OK. If I'm reading between the lines correctly, things sound optimistic for you. Please take care of yourself physically, mentally and emotionally as much as you can.

Thanks also for saying that you think I'm doing good things as a caregiver and wife. That is really what I wanted when all this began for him. As time goes on however, I'm finding it harder. It is not that I'm unwilling to do these things, but he is cutting me out of dialog about his condition and is getting argumentative over things he never would have before. I've been letting it roll off my back, but I couldn't take it anymore yesterday and I told him I always thought the 2 of us could do anything together, but now he is treating me with such little regard that it leaves me cold. He just shrugged and walked out of the room. It makes me sad how some people have support around them and brush it aside, while others want it and don't have it.

Thanks for reading my post and thanks for replying. Please take care and know that I'm sending positive vibes your way.

Doctors in family not helpful, is this normal?

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