Peeking Into Research

We have medical and scientific research going on around us all the time. We have the freedom of the press people demanding instant access to the research. There are some who are concerned about it in that opposing factions are demanding this access into research so they can come up with ways to block or slow it.

The Union of Concerned Scientists is even concerned about interference into the "deliberate nature of science research". Scientists learn about something new and have to digest and discuss it and research it further without interference to learn its impact.

"These scientists, the group says, are increasingly being harassed by ideological foes who seek to unearth documents that would derail or sully their work with evidence of bias."

My concerns have long been based in the media who seem to insist on hyping tiny developments in research, particularly cancer research, to be the biggest breakthrough since sliced bread. While I appreciate First Amendment rights for freedom of information and I do not think that anything but the truth should be published. I think we need to learn the whole story when the research is completed before being subjected to media hype.

If a clinical trial was based on FOUR people, as I blogged about last year, it is NOT newsworthy. Or if its a preliminary breakthrough which was not the goal of the study, why are you telling us this? And if you are only looking for a reason to derail someone else's work, why don't you wait until they are done (unless you truly have a scientific reason, not a personal agenda) to tell us about it. Research takes time and is not going to be ready for the evening news, until it is complete.

This holds true for all types of research. Time is a requirement of research. And even with the internet and open access an expectation, we need to allow the research to be completed before airing it. This also is the case for clinical trials and FDA approvals. 

Okay, this is a pet peeve of mine.

Explaining Cancer Afterwards

Life after cancer can be very different than before it. Forget all that 'new normal' crap, I'm talking about how to tell new people in your life about your cancer history. This includes dating post cancer, just making new friends, and even new employers.

After a cancer diagnosis, you move to 'cancerland' and are basically stuck there for the rest of your life. As life goes on you meet new people as do non-cancer people. But the difference is when, and if, you tell them about your medical history and cancer.

Let's tackle these one by one. First of all when you get a new job after cancer, you should never tell your new employer about your cancer even if you get a new diagnosis. They do not need to know. You are not legally required to tell them. If you have medical appointments, they do not need to know why. You can always say something like 'I have an issue that needs to be dealt with'. And if you need chemo or radiation again which will require frequent absences you can just say you have a medical condition that may require alterations in your schedule for a while.

It is your decision if you want to share your medical issues with your employer and, if you do, it will be held against you at some point. No matter that there are anti-discrimination laws, you will be discriminated against. You will become a 'sick person' in someone's mind and will blatantly or subtly become the subject of discriminatory practices. Miss out on a promotion etc because you may not be able to grow with the position or could miss too much work because of your medical issues. So keep your mouth shut.

New friends? That's different. When you feel comfortable in the relationship you can tell them about your cancer if you want. It depends on how open a person you are. And how you think they might react. Some people (because they are idiots) head for the hills at the word cancer, others will wrap you in a protective blanket and try to baby you, and others may try to drive you crazy with their attempts to make you a healthy person by following their misguided attempts to force you to alter your life to that of a grain, eating raw vegan who runs marathons (or anything you are not - I am not against vegans I am just not a vegan and don't want to, nor do I want to run a marathon). Note: none of these people are your friends. The people who are your friends will treat you the same as they did before they knew about your medical history.

Dating? Same deal. I was first diagnosed with thyroid cancer before my freshman and sophomore years. My father called the dean because I was late coming back after summer break because of my surgery. I told a few friends and it was somewhat a known fact while I was in school but I didn't discuss it much. But I did date and tried to be a normal college student as much as possible and didn't let my cancer distract me from normal college student activities such as parties, football games, bar hopping, cramming for exams, staying up really late, and binge watching old movies on Saturdays with a group of friends.

But later on when I was out in the real world, dating was different. Should I tell that hot new guy or not? Eventually I learned that there was no reason to share my cancer history until the relationship got serious. Basically, if they were close enough to me to see the medications I took daily, realized I took more than the average human being, and asked me why I needed them, that might be a good place to start. 

I had roommates for years that I never told about my medical history because I just didn't consider it their business. Some boyfriends I told, some I didn't. If it was a short term relationship that wasn't going anywhere, why bother? If a relationship was getting serious, it could become shared information. But it really didn't rush to share the information. Maybe I am a fairly private person but I never have found a reason to rush to share the information, unless I was is at a cancer focused organization or something. 

I guess what I am saying is that there is no reason to share your medical history if you don't want to. People don't need to know the specifics unless you want them to. 

If you are diagnosed with cancer, it is your choice to share or not. Society has become more open about cancer than in the 1980s when I was first diagnosed, but it doesn't mean you have to tell anyone you don't want to. (But feel free to tell the cop who pulls you over for speeding on the way to your cancer support group. I had a friend did and got out of a ticket.)

Not sharing your medical news

I had dinner with an old friend last night, as well has her husband, and some of my family. I hadn't seen her in a few years just because both of our lives have taken us in different directions.

In talking, she shared that she had gone through a second breast cancer diagnosis last summer. And she had decided not to tell everyone about it. She told some people but not many more about her diagnosis, decision process, surgery and treatment. Why? Because she didn't want to and she decided there really wasn't a need for it. So she didn't.

I completely agreed with her decision and fully support it. Why? Because its what she was comfortable with. With any medical diagnosis, it is completely the patient's choice on how to handle it. (I mean unless there is an issue of lack of mental capacity.)

Seriously, the absolute worst thing that can happen to a patient if other people decide to share their diagnosis publicly. Imagine that you get a diagnosis and it ends up as the front page of your local newspaper? (This must happen to celebrities with the National Enquirer, and similar publications, all the time.) Or, you go to a theater and have the emcee start with a spotlight on you and the announcement, 'let's welcome Caroline and her newest cancer diagnosis'. That would really suck.

This is where HIPAA laws are important. It doesn't matter if you are the patient's friend or family member, its not your news to share so shut up! HIPAA laws should also apply to friends and family.

Talking and working out

Yesterday afternoon at the gym, I got to talking to two other women (this is a common occurrence to stop and chat) on the topic of getting into shape/staying in shape while dealing with ailments. One woman is just done with chemotherapy again for chronic recurrent ovarian cancer and is new to the gym. The other woman has osteoarthritis among other problems and has belonged for five years or so.

The woman with ovarian is trying to get back in shape so she can go on a three week vacation to Turkey and Spain. She said it is quite difficult quite understandably to get some muscle tone again. I shared that I had been diagnosed with RA and fibromyalgia since joining the gym plus two cancer diagnoses as well. They both said they were impressed by what I could do in my workout. I said I thought I was in better shape at my diagnosis because I had already been going there regularly.

So the discussion quickly turned to the important of working out before a life changing diagnosis and after the diagnosis. All of us agreed going to the gym was important and helped us greatly. The third woman with osteoarthritis had  had a lot of back pain before working out. Her improved muscle tone had helped her a lot and helped get rid of a lot of pain.

Then the conversation came to the benefits of swimming. All of us agreed we could not be paid enough to swim laps. One woman dog paddles, the other woman had her face pushed in the water by an instructor as a child and never learned to swim. I just hate swimming laps. So all of us agree the gym is  a great way to get in shape but you won't catch us in the pool.

So while talking and working out, I learned a bit about others and how we can all agree on different things.

PS this is a lame post today. I know it.