The Best Holiday Advice

I stole this from Journeying Before Breast Cancer and I think it is the best holiday advice I have ever seen:

Doctor Search

Dana Farber Cancer Institute just released this list of what to look for in an oncologist. I just think that they are things we should look for in all doctors. I have ditched doctors who didn't have all these: Communication - why have a doctor who doesn't talk to you. Specific expertise - I wouldn't want a dermatologist to treat my rheumatoid arthritis but I would want them to remove funky looking moles. I would also want my oncologist to specialize in breast cancer. Willingness to collaborate - this is exactly why I am getting a new pain management doctor: he won't let his patients talk to someone else and then go back to him - meaning no second opinions if you are his patient. Access to new technologies - if my doctor is not using the newest technologies to treat me, I don't want them. I had a gastroenterologist in the mid 1980s. At that time he was the head of the department. I went back to him around 2009 and he was still writing paper notes, and only looking at his hand written notes.  Emphasis on personalized treatment - I am not a number. I am an individual. I have a million (or so) ailments and I want a doctor to take all of those into account. Focus on the whole person - please don't just treat my breast cancer but look at the rest of me and suggest things that will benefit my entire body and think about my emotions and mental state. Someone with your style - actually, someone who will adapt to my style. I know how much information I want to hear and will ask you questions. I expect educated answers and references to where I can find additional information. A good team on their side - its not just an individual doctor that treats you. You have to deal with everyone from the person who calls you to make an appointment to the nurse who checks your vitals when you get there and answers questions when the doctor isn't available in person.  This is a good list to review and consider when looking at any doctor.

Women Doctors Are Better

It took a study but the truth is out, women doctors are better than men.

I have always preferred women doctors. I just assumed it was because my pediatrician was a woman. The first dentist I went to was a woman - I have these vague memories of going to see her in her Boston office and getting erasers shaped like animals afterwards. If I get a choice, I usually prefer a woman doctor. Currently I have women doctors for: primary care, oncologist, endocrinologist, dentist, periodontist, therapist, meds therapist, rheumatologist, eye doctor....

"People treated by a female had a 4 percent lower relative risk of dying and 5 percent lower relative risk of being admitted to the hospital again in the following month.

To explain the discrepancy, the researchers point to past studies that have shown female physicians are more likely to provide preventive care and psychosocial counseling. Female doctors are also more likely to adhere to clinical guidelines."

I think the biggest part of this is the level of compassion I receive from these medical professionals. 

I think women are more compassionate as a rule and this compassion is also less likely to come from male doctors. Preventive care and counseling are very important. Clinical guidelines may or may not be as perfect as the article goes on to add:

"...adherence to clinical guidelines “does not always equate with quality or value of care.”

But the point is there. 

Back in the old days, women were not allowed to be doctors. But the times have change, go find a woman doctor and get better care.

Loneliness and Isolation

I find our new house provides lots of loneliness and isolation. I knew it when we moved out here and I stopped working that my life would be very different. But I don't think I realized how different until now.

Last winter and spring I was busy getting settled into our new house - and painting about half the rooms in the house. Then I was busy gardening and being outside. Then it was craft show season. Now not so much. I'm not going to finish painting the house until after the holidays but that only takes up so much of my time.

Our neighborhood is full of people who work. The woman on one side is home with two small children to keep her busy. The woman on the other side is retired and never seems to be home. I have taken time to get to know her but I don't think we have that much in common.

Most of my friends work full time or nearly full time so they aren't available during the week, or they are not very local and a good drive away.

My Christmas presents are all purchased. I have to put a few more in tissue in gift bags. I am waiting for a couple last things. I have one idea of one thing to make and that's it.

I love my husband but he isn't here all day long. He works full time and then comes home and does his own thing. This is important because he needs time to relax. When he's not here, he's busy, even if I am not. So I can't expect him to focus on me the second he walks in the door until we go to bed at night. I can't count on him to fill my time when he is home. But the real problem is when he is at work anyway.

Yesterday I was at the gym and then came home and was then home for the day. The cats are not much for conversation. So its just me and and bad TV all day long.

That is not a good combination. I need more to fill my time and interact with other people - other than the gym and doctor appointments. Basically I need a life. A new life.

So that is my focus. My first experience with this kind of isolation was during breast cancer treatment. I was home and I bored. My husband was at work and it went on for months. I was lonely and isolated. Any other time I was home for extended periods of time I was healing from something and got better. Now its just me.

I have options I can turn into Suzy Homemaker but that's really not me. I hate housecleaning. I have been cooking more (but that's not good for my waistline). I could get healthy - but we know that's not going to happen. 

My health is the huge limitation in my life. Physically I can't do much more than I do now. That is my problem. 

The problem is I know what my problem is but haven't quite figured out how to fix it. This week my calendar is pretty empty except medical appointments and the gym. Next week we will have house guests for several days. The week after - I need a plan. I need friends to get together with. I need projects to do. I need to figure out how to get out of the house and do things (within my limitations).

Peer Support

When first diagnosed with breast cancer, I started going to support groups. And I was very appreciative of what I learned from the other women in them. I also found support in online communities which helped me even more. You go to your support group weekly but the online groups were available 24/7.

I can't tell you how much I learned at my support groups that helped me understand my treatment protocol, what to ask my doctor, and more. The peer support was very different from what I learned from my doctor. In some ways it was less invasive but more personal than my oncologist and his team.

Now a hospital is using a peer support group to help promote communication across different groups and to help reduce differences in rates of screening and survival, particularly in Latina/Hispanic women as this hospital is in New Mexico.

I think this is one of those 'doh' moments that someone should have thought of sooner. There are many other peer support networks out there. But to have one at a hospital to help improve the physical and emotional health of those with breast cancer, is amazing.

I hope many other hospitals try this type of activity for those with breast cancer or other ailments where there are disparities.

Don't Go Quietly

Somewhere out there is a birthday/friendship card about the friend you want is not the one who will bail you out of jail but the one who is sitting there with you in jail talking about how much fun you had. I want to be the instigator who got us arrested for something like 'public embarrassment' and I have a couple of friends who would be sitting in jail with me.

I have two old friends who might be sitting in jail with me (you know who you are - don't deny it). One is a friend from college and one is someone who I started working with in the mid-1980s - you know who you are!

Back in 1981 I was told I had thyroid cancer and I should take it easy for the rest of my life, get plenty of rest, eat right, blah, blah, blah. I then thought about it and decided I would not play in traffic but I wasn't going to stay home and do nothing. (Hence, 10 Club Med vacations by myself but that's another story.) I have also done a lot of other travel, adventures, and finally some medical mis-adventures.

But I have also learned to cultivate a list of heroes, of people who I admire who have not gone quietly. Just last week, I learned about another person who did not go quietly. That is how I want to go. I'm still working on the details.

Do not go gentle into that good night
Dylan Thomas, 1914 - 1953

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

Doctors Should Speak Clearly

I really dislike a lot of doctor speak. They say things like 'with your medical history we need to be sure' or 'that really needs more research before we can tell if it would be right for you'. Then they try to add explanations about things that include the words 'that's a possibility' or 'we could consider that'.

What exactly does the word 'consider' mean? I had never really thought about that until I read this blog post that was mentioned on Facebook and then I got really irritated. If a doctor says they will 'consider' a potential treatment protocol? Does that mean they want to go look something up about it or they want to prolong my agony? Why can't they just say there's a new option for you that looks pretty good.

I think doctors get trained so much (and have to keep potential malpractice suits in mind) that they hesitate to speak directly about anything. They feel the need to insert all the fine print you see in a print ad for a medication to cover all the potential side effects or 'adverse reactions' into their words. Can't they just drop the doctor speak and talk clearly to a patient.

Its just you and your doctor sitting in an exam room or their office, and they have to speak in circles so there is no chance you could ever sue them for anything. Its unfortunate that some people feel the need to sue too quickly and even more unfortunate that some doctors abuse their power and some patients suffer as a result. The rest of us patients pay the price for that in the resulting doctor speak.

I think if doctors spoke clearly to their patients and talked to us like a person instead of as a potential lawsuit? And if they didn't use the words like 'consider' or 'possibility', wouldn't we all be better off?