Beeswax and Helping

If you want to be a good friend during a medical crisis, ask how you can help. Don't say, 'how can I help?' Ask 'Do you need anything from the grocery store? I'm going later today.' Mow their lawn. Pick up their kids from school. All those things. Anything you can do.

However, its 'none of your beeswax' on what exactly their health issues are so:

1. Do not interrogate them daily on what's the latest from their doctor 
2. Do not tell the world every little detail you interrogated out of them. Its not your story to tell.
3. Do not tell them your cousin's hairdresser's uncle's neighbor's son had the same thing and their treatment was what your friend has and they died in the end. Or conversely, their treatment was different and must be better because they lived another two years.

So remember, do not interrogate, its not your beeswax to share, and any other treatment anyone else had is irrelevant.

But go mow their lawn.....

A Post for Every Oncology Medical Practitioner

I have often spoke about how nurses, doctors and other medical practitioners just don't ''get it' because they have never been through it themselves. They also don't understand what they do not understand, because they haven't been there.It has been my greatest desire to have medical practitioners who have had the ailment they are treating. Especially oncology medical practitioners.

An oncology nurse recently wrote an apology letter to all her patients. She had not 'gotten it' in all her dealings with patients in her care. Now she knows what she did not get because she has now been diagnosed with a stage III colon cancer. This unfortunate diagnosis now helps her in her dealings with patients. Her letter begins with the paragraphs below. But please go read the entire letter yourself.

"Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.

I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it."

Once you read the letter, please share it with your medical professionals. We can help educate our medical providers and perhaps this would help them understand our side.

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.

The other half of having cancer

I have touched upon this before but the other half of having cancer, or any ailment, is the impact on the patient's partner or spouse. Somehow that gets skipped. The spouse sometimes becomes the silent partner without support in a cancer journey.

I know dozens of people with cancer and other ailments - either in person or online - and each handle it differently.

Since we got married eight years ago, I have had five surgeries, numerous procedures, and other medical adventures and been diagnosed with breast cancer, rheumatoid arthritis, and fibromyalgia as well as degenerating disks, gall stones, and I can't remember everything else.

My husband comes with me on all important doctor appointments - he is allowed to see everything but a pelvic exam and the scale when it shows my weight. (The first has never been an issue and the second he is always told to turn away or close his eyes and the nurses write it down without saying a thing.)

I wanted him at the 'bad' appointments because I wanted support from him and also felt that he should be involved as they were going to have a lot of impact on our lives so he should be able to hear whats going on and ask his own questions.

Even now that my doctor appointments are not dealing with cancer treatment, I still call him immediately after every one to share any news about my health.

When he had his own cancer issues a few years ago, I went with him on all his appointments to hear what the doctor has to say and make sure his questions got answered. I needed to be involved so I could support him as best I could.

But then I have friends who go to all their cancer appointments by themselves and chose not to involve any family members in their treatment. I have friends who drove themselves to all their chemo infusions. I always needed a nap after mine and wasn't sure I could drive myself home.

I know there is a line between sucking up all their time and no one wants to go to as many doctor appointments as I have (a minimum of 50/year - really) but sometimes I think you need the support.

Studies have shown that husbands feel isolated when their wives have breast cancer - they don't get the support they need. A cancer diagnosis is not a one person adventure, it involves the patients family as well.

Doctors are happy to include spouses in medical discussions. I think a spouse who is involved will feel less isolation as they become part of the cancer journey as opposed to a bystander.

Once Burned, Twice Shy

When you tell someone you have cancer, you can rightfully expect anywhere in a range of emotions. Anywhere from, 'oh, that's too bad, my uncle died of it'; taking a step back 'I am late for an appointment''; or, the ever thoughtful, 'how long do you have?' Occasionally you get a nice person who recognizes that you have just been giving a life changing diagnosis and treats you normally and says something like 'can I help you at all?'

 After dealing with that for a few decades, you can understand I can be a bit reluctant to bring up new ailments, like rheumatoid arthritis and fibromyalgia. But tentatively I have talked about it. I have had quite a range of responses. From a rather outspoken co-worker 'ow, that's a bad one'. From others at the gym 'and you are still here working out, that's great'. Or from friends 'when will it get better?'

In other words, I am pleasantly surprised at the positive responses. I think somewhere inside, I was expecting the people to react the same as they would to a cancer diagnosis. Because it was a big change in my life, similar to a cancer diagnosis.

With the long weekend I allowed myself some downtime where I could contemplate while knitting and watching the cat snore (that's the height of my multi-tasking abilities these days). This gave me time to think about the differences between the two words: cancer and rheumatoid.

Both are life altering. Both leave you changed forever. So why does one have to make people run away?

Another government report

There was a big interagency report released this week on breast cancer. This was the result of a requirement by a 2004 Act of Congress requiring Health and Human Services (and the creation of an alphabet soup agency - IBCERCC) to review "the current state of breast cancer and the environment research and make recommendations for eliminating any knowledge gaps in this area."

You can read more detail about the report, a summary of its findings, and the report itself (and the Act of Congress) here. If you google it, you can find oodles of information on it - critiquing the report, praising it, and summarizing it. Here's one article on it and another one.

My biggest take away, I have not read the report only the summary articles, is this (I can have an opinion even though I only read the Cliff notes version). :

"What’s needed is better coordination among researchers and increased research funding, according to the report."

I'm all for better coordination among researchers. I mean do they talk to each other and share their progress or do they sink into holes in the ground and focus on what they are doing and hide the results until they can get a patent or from fear someone will steal their idea? Or do they talk to each other and share progress between labs during the process?

All I can tell at this point is that it took an Act of Congress, a government report, an alphabet soup agency, and nine years to tell us sharing is good.

Sharing information

Today's topic for Wego Health Blog month is choosing what information to share.

When I was diagnosed with thyroid cancer, cancer was the big C, I was young, and cancer was the killer. I quickly learned that the word cancer made people frequently run away from me. I grew to like 'selective sharing' and only sharing with those I felt were in on the 'need to know'. I didn't tell long term friends for sometimes decades.

At my second diagnosis, I said to myself, the heck with this, I am going to be a bit more open about my cancer and now am comfortable living a life that includes the word 'cancer'. This isn't to say I introduce myself to total strangers as someone who has been diagnosed with cancer. But there are times when I do openly talk about it.

I have two part time jobs. One of them is at a local cancer support organization. There I am quite open with that group as its full of people who have had cancer or who treat people with cancer. I think most of them are fairly aware of my medical background.

At my other job, they all think I know so much about cancer and its treatment because of my job at the cancer center. They do not know about my cancer, they just think I am incredibly unhealthy with a bad back, fibromyalgia, RA, tennis elbow, bad ankle, and more. They laugh at all my doctor appointments and tease me about my ailments. Sometimes I was tempted to tell them about it but then one day one of my coworkers said that every time she hears the word 'cancer', she just assumes that the person is done for. That was it. I no longer considered that as an option.

So how do I decide where to draw the line. I do not broadcast my ailments. I also don't feel the need to keep everyone, including family members, updated with minute by minute updates on the latest ailment and treatments. Sometimes I am more open about things than others. It really depends on the ailment, who the conversation is with.

If my medical issues do not impact the situation, I leave them out. If my medical issues do impact the situation, I may bring it up. If I am asked if I want to go to a museum, I will probably decline. If pushed I might tell them I simply can't stand around like that to enjoy the time.

The level of detail that I share is usually very little. However if a friend calls me up and asks about a specific medical procedure that I have had the privilege of undergoing because they are going to have the procedure, I am happy to share all sorts of details including pain level, hospital stays, recovery, questions they should ask their doctor, etc.

So maybe I still live by the 'selective sharing' on a 'need to know basis'. Maybe I haven't changed as much as I thought.

Would you share?

Two things happened yesterday (well lots more than two things happened in my life but these two made me think) and I started thinking. How much and when do you tell your cancer story? This isn't as easy as you might think. Once you tell the world you can't 'untell' it. And people still have a tendency to put you in that special category of 'on their way out' once they hear that c-word. Would a hiring manager, ignore the C-factor when reviewing your resume? Would people start treating you differently? Would it bring the crazies out of the woodwork? Would friends start rejecting you? These are very real questions.

First and foremost, your health is no one's business but your own. If you choose to share, its your decision. No one should 'share' for you. It is not their story to tell. And second, how public do you want to be? Again, you can't undo it. Once its out there, it never goes back. But I will say that my blog was picked up by Parade Magazine last fall (scroll down, I am below the fold) and it didn't change my life. I don't think anyone read it.

Yesterday morning my husband forwarded me an email from work where a colleague's wife has been diagnosed with breast cancer. The email came from an employee who had spoken with the colleague (husband) and he thought his wife could use a plant or something (a plant? get real) and they were going to send a thinking of you card. I'm not sure what good a plant would do but a card might be nice. (I think a plant is husband-speak for I haven't got a clue but its a really nice thought to do something.)

When I was diagnosed my husband didn't bring it up at work because he didn't think it was their business (and I agreed). I did urge him to privately tell us boss that I was having health issues and that is why he kept taking time off to take me to treatments. But  nothing was ever circulated through the office about me. I don't think I would want it.

Would you want your health to be emailed around your spouse's office? I would want to be consulted and ask what benefit would come out of it. A card is okay. A stupid plant not so much. A bunch of sympathy from people you don't know? Maybe if we socialized with my husband's colleagues and their spouses, but I do not make deep long term friendships through work environments. Work and friends are separate. So I guess I'm saying you can keep your cards and plants.

Later in the day I received an email from an online cancer community that Women Magazine is looking on Facebook for breast and ovarian cancer people to tell their story:

Breast and ovarian cancer survivors share your story! We love to include survivor stories in our quarterly print issue. If you would like to share your story in our fall issue, please let us know by sending an email to editor@omnihealthmedia.com.

In the first nano-second I was going to send in my name. But then I took a second nano-second to say 'no thanks, I want my privacy'.  I would prefer not to be put in the spotlight of national media. That's a big step that I am not ready to take.