Sometimes We Just Don't Care Anymore

Yesterday I ran into a friend and we chatted for a while. I have been dealing with my usual ups and downs health wise and some emotional crap. She has also been through a round of health stuff and emotional stuff. We caught up on the most important things going on in our lives for a few minutes and touched on some of the items we have been coping with. We both said sometimes we just don't care anymore.

Call it being overwhelmed. Call it whatever you want. But we just don't care. As a professional patient, sometimes you get so inundated that you really don't give a s**t about anything. Coping with our lives gets so complicated that we just don't care, unless there was something near term fatal, there is nothing that is that important.

I have my annual physical this week and we will talk about my back pains and maybe I should have more imaging on it. Maybe I should have a lot more imaging and testing but I really don't want it now. Unless my doctor tells me I need immediate treatment for something so I don't die, I'm happy to wait. I have so many ailments that how can I have anything more?

My friend, who also has gone through her own personal roller coaster, agreed with me. Right now, she only wants to take a couple vacations and doesn't want to think about emotional or health issues for a while. After she does some travelling, we are going to get together at the end of October for coffee to catch up. Maybe by then we both will care about things again.

Tolerance

I haven't been feeling very tolerant recently. What I mean by tolerant is being able to put up with other people's crap. It is not my problem if some people are acting pretty stupid around me, or are rude, or are just plain dumb. I do not feel the need to put up with it. I have enough going on in my life that I can be a bit cranky when dealing with others.

As a friend was telling me recently, I need to keep my mouth shut and not tell people they are driving me crazy. I know its not my business what someone else wants to do but sometimes I can be a bit 'outspoken' (as I hear peals of laughter in my head from the people who know me best). I recognize that I do think I can come across as a bit bitchy at times. I do try to be a nice person but sometimes I just can't keep my mouth shut.

Especially if someone is really pushing my buttons, then I get really cranky. Here's an example: a group of friends are trying to get together for lunch and a museum. Around here, many public libraries have discount museum passes available on a first come/first served basis. I don't mind getting the museum passes, because I am cheap and it saves me money.

But one friend (and I am not making this up) called me, texted me, called my library, and texted me again in a five minute period to let me know that my library has the pass available for the day we want them, they were available, and could I reserve it. I didn't require babysitting and I sent her a text back to tell her that. That all got under my skin for some reason. Why did she need to do so much? All I needed was to be asked to see if I could get the museum pass.

Am I over-reacting? I don't think so. It made me feel that she thought I was incapable of checking on the availability of the pass and reserving it. Of course my inner child made me wait several days to actually reserve the pass to make her sweat if she decided to micromanage me and check again at the library.

I don't need micromanaging. I am quite capable of taking care of things myself. Allow me to feel a bit intolerant for a bit here.

Sympathetic or Over Sensitive?

When you were diagnosed with cancer, didn't other people with cancer come crawling out of the woodwork? You met all these people to talk to about cancer and help you through your diagnosis and treatment.  You got diagnosed so you can talk to other people in cancerland. That is fine, actually pretty cool. Its actually nice to bond with people who are coping or have coped with the surgeries, chemo, radiation and all that other 'fun' stuff.

But then, if someone you know knows someone else who was diagnosed with cancer, do you feel like they rush to tell you about it? Or are they asking questions of you to help their friend? Or are you just being hypersensitive?

I remember when I was in college a couple of years after my thyroid cancer diagnosis, a guy I knew was diagnosed with cancer. He was brought to a party by a mutual friend who brought him over to me so we could talk. He had a late stage brain cancer, only lived a few months longer, and was in a wheelchair. It was actually great to get to know him better but a very sad conversation.

Afterwards I started thinking (which I should never do, I know) and almost felt like I was expected to talk to him because we both had cancer so therefore we must know each other and be friends. Even though our cancers were completely different on all levels.

Since my breast cancer diagnosis, I have been more open about my medical history and talk to people all over all the time about cancer and other medical issues. I am happy to talking as many people who want to talk to me about medical crap (all cancer is crap).

I had a nightmare dream last night that I met up with an old friend from college (who's brother was married to someone I went to high school with) who was going out for a big dinner an hour before his last hope surgery for lung cancer at a time when I was also hospitalized. In my dream, I felt very stressed about my old friend (who was a melange of a bunch of old friends) being so sick and running out of options when I was hospitalized only for a minor issue and went home the next day. (And who goes out for dinner before surgery?)

When I woke up I felt I had been very put upon my by high school friend and her husband because I had cancer I was supposed to be the 'caretaker' of the sick friend. Then I started thinking about it (I promise I will try to stop thinking as much):

- am I the good sympathetic resident of cancerland; or,
- am I becoming oversensitive to the 'friend of a friend of a friend who was just diagnosed with cancer'; or,
- am I becoming a cynic about all medical crap?

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.)

Life with chronic conditions

I may whine complain about a lot of the crap I deal with in my life. I also may be a tad cranky about getting my meds so I don't hurt all the time.

I have a therapist for talking about stuff and I have a meds therapist who keeps me on an even keel. So any issues with depression are held back. I have people to talk things out with. And I know my ailments are not in my head.

I get exercise to help maintain my body as much as I can before my ailments compromise it further. Its not age that is doing this to me.

But so many people just don't get it.

I have a friend with a chronically bad back who has a fair amount of pain. But she doesn't see a doctor about it. She does occasionally see a physical therapist. She has no prescriptions for pain meds because she gets her sister's prescription. She doesn't exercise regularly. And she doesn't understand how I live in pain and have to beg off on group events or leave early. Since she's there and in pain she doesn't understand why I can't stick around.

I also have friends who want to go out at night to do things. Since not much is allowed to get between me and my 930 pm self imposed curfew, I don't go out much. If I do, it needs to have a comfy chair that provides good support. And it can't include any amount of walking or standing.

Finally I have an expiration period. If I am out too long, I spend a long time recovering. So if a friend is late and I spend time waiting around for them, especially if I am standing, I don't get to fully enjoy my time out and end up leaving early to go home and rest before I need to spend a couple days recovering. Therefore I don't spend time with friends who are late.

My husband does understand me. He claims that if I do things I shouldn't or for too long, I am crabby for a day or two. Apparently he doesn't like me when I am crabby. Maybe I should rip off that fake smile and let my inner crabbiness show and then more people might get it.

Advice for the newly diagnosed

Yesterday I got a message from a friend about a friend of a friend of a friend who was newly diagnosed with breast cancer, that unfortunately seems like it might be stage IV.

Both my friend and my friend's friend had been urging her to go to Dana Farber in Boston immediately for more doctors instead of staying where she is for treatment. They also admitted, while they knew a fair amount about cancer - because they have been there - they did not understand hormone receptors and other issues particular to breast cancer. My response was give her my contact information and I would be happy to help her understand her diagnosis, as much as I can, and where she can go to get more information and support.

Later I started thinking (that dangerous proposition again) about what would be my advice for the newly diagnosed.

1. Find information to help you understand your diagnosis, knowledge is power. Look for information online, in books (yes the old fashioned printed things), and from medical professionals and medical associations. Ask your doctor questions about your diagnosis and ask your doctor for resources for more information to help you understand your not-so-fun ailment.
   There can be too much information to absorb at once. But I think if you start with your disease, the stage its at, and treatment options - big picture only - you can get a better idea of what you are facing. I mean do not get wrapped up in different chemotherapy options at this point. I think if you can get an idea of what you are facing in terms your disease and not get bogged down into the details, you can get a better grasp on your options.
   Later, after you have had a chance to absorb your diagnosis and its implications you can then focus on the aspects of the different treatment options.
2. Find support to help you keep your sanity. You can find support in many places. I suggest asking your doctor's office to start but also ask any friends or family who have been faced with a similar diagnosis or are in the medical profession. They may be able to provide support but also may be able to help you find more information. Support is many things. It can be a support group - whether virtual or in person. It can be a network of friends who provide childcare, meals, and company. It can be someone to hold your hand while going through treatment or at the doctor's getting news.
3. Focus on your sanity. When faced with a not-so-great diagnosis, you can easily go down the emotional roller coaster to hell in a hand basket and back again, over and over. It is okay to say, 'I'm not going to make a decision right now, I need to think about it'. When faced with treatment options, a good answer can be a question - how soon do I need to decide?. 
4. Stand your ground. Often well-intentioned friends and family members tell you what they think you should do - because their hair dresser's dog walker's cousin's next door neighbor had a similar disease twenty years ago and this is what happened to them. Smile and tell them thank you and walk away. Others will tell you which doctor to use, or why you should go to Germany for this new treatment, or other not so helpful information. Finally, there are those who will offer condolences as if they were at your funeral 'well, you have lived a good life' or 'it must be your time'. What are they talking about? You aren't dead.
   Do not let these people near you, walk away from them. They are not helping you. They do not understand your predicament and listening to them will not help you. They will send you down that emotional roller coaster again. Focus on finding new friends who are supportive. 
5. There is no such thing as a new 'normal' so forget about finding it. Those people who tell us about the so called new normal have no idea what they are talking about. All it does is stress us patients out as we try to find it. However you can still be who you are after diagnosis. You may find you are stronger than you thought you were. You will find out who your true friends really are.

I am not a doctor or a medical professional. I am only a professional patient who has been wandering the halls of medical disasters for decades. This is my advice. You may find that your advice to the newly diagnosed is different.