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.

Not A Good Idea

Yesterday, I decided I really wasn't feeling well and stayed home with Boots who is not feeling well either. I really wasn't feeling well. Everything ached and I was tired. Not a good day. My husband went off to work around 7 and left us both home (with the other healthy cat) for the day until 5 pm.

So I took care of myself by not exerting myself. I allowed myself to be lazy and have my body aches and pains and fatigue dictate what I did.

The sum total of what I did yesterday consists of watching 3 LMN movies, 2 episodes of Law & Order, and one episode of Property Brothers. I also set up my loom and started weaving with some beautiful chenille yarn. I also went outside to get the mail from the end of the driveway and supervise Boots when he went out for about 30 minutes. Not a lot of exertion.

Boots hung out with me. He went from room to room with me. He did insist on going out briefly (he hates litter boxes and prefers the great outdoors) but came right back in.

By the end of the day I felt a little better. I definitely had not exerted myself. But, and then comes the big 'but'.

On the downside, by staying home and not doing much, I felt totally isolated by the end of the day. I am not up to doing that regularly. I felt cut off from the world. I didn't talk on the phone to friends but had several email and text conversations. I also took care of some things I needed to do on the phone and online.

However, I could not live like that every day. I mean I physically could but would need to get more exercise. But mentally and emotionally, it would be horrible for me. I could see myself getting very depressed quite easily. And if I got deeply depressed that would have all sorts of bad ramifications that I won't even go into here. I am already being treated for 'post cancer' depression - which really should be 'my body fell apart before I was ready' depression.

I am going to call yesterday a learning experience. And one not to be repeated unless I am completely incapacitated and not expected to survive. This also reinforces to me the importance of one's emotional/mental state as compared to your physical state. They are both equally important.

Today, I am going to make sure I do get out and do things. It help that my husband is home. I think I might even go to the gym because I didn't yesterday.

Managing Emotions

This week I read two different blog posts from other women dealing with breast cancer - Nancy wrote about cancer patients being told to be positive and Florence wrote about the crappy and the happy we deal with in our lives. After reading them, I commented on both. And then started thinking (sorry!).

First of all we have the issue of cancer patients being told to be positive. Honestly, whoever came up with this was an idiot. There is something to be said for not succumbing to depression while dealing with a medical disaster. If you are depressed, you aren't going to take your meds, go to the doctor, get emotional support. But if you are trying to stay positive you will probably handle it better. However, don't tell me to be positive and smile.... Grrr....

Then we have the issue of coping with the crappy and the happy. Everyone gets a load of crappy in their life and a load of happy. But its how we handle it all. We have to learn to balance the bad with the good and look at the goals for the long haul and take enjoyment out of what we have.

Even without adding in a medical roller coaster along with everything else, it can be tough to maintain one's sanity and be able to smile once in a while. Its that medical crap that can screw everything up. All of a sudden you can't work, you have problems getting around and paying your bills. And you are supposed to smile? Don't tell me to be positive on top of all that. I will work on being able to keep a smile on without your help.

I think I just don't like being told what to do.

Resentment

Among all the other emotions for a cancer patient is resentment. First there is the resentment of why me? But the biggest problem is the resentment of others.

Why did X turn their back on me when I was diagnosed with cancer after all our years of friendship? This one is very common. I have lost more friends at the word cancer than I care to count. I hope they think they are better off without me and I certainly know I am better off without them. But it took a long time to get that way. There are numerous iterations of this passed around among cancer patients. We all have this happen to us.

But the bigger resentment comes when key family members, who we have relied on our whole lives for support, hide information about our diagnoses from us. Yes this happens.

I met a woman about five years ago. She was diagnosed with thyroid cancer when she was 18. Her parents never told her that she was diagnosed with cancer. As a result she never had any follow up treatment after cancer and experienced numerous recurrences and their treatments for decades. Her parents were scared of the word cancer and didn't want to admit it had happened to their family.

I know another woman who was diagnosed at age 20 with cancer. Her mother never told her. Her sister never told her. Her best friend never told her. Can you believe it? And her mother since passed away before she had a chance to come to grips with this. Her friends and family did not feel she was emotionally able to cope with her diagnosis.

I know someone else who's family were with her through her cancer diagnosis but never discussed it. For decades. It was sort of put to the side and was and is the elephant in the room that is never spoken of. How does that sound? How do you face your family when they do not choose to discuss your health for decades?

This kind of resentment festers and lingers. Its a huge emotional load for a cancer patient to deal with along side of life long health issues, side effects, and emotional drain.

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. 

Connect the Mind with the Body

The 'all-powerful' insurance companies have been mandated by law to cover mental and behavioral issues the same as physical ones since 2008. But just because the law says so, doesn't mean this really happens. (Didn't I just blog about this? I did, yesterday. And then today's Boston Globe has an article on this very subject.)

The new way of health care payments, the global payment system, may actually lead to better care for the emotional side of treatment. The payments are made per patient and not per treatment and an emotionally healthy patient is probably better at managing their medical treatments.

"The hope is that global payments are providing incentives for insurers and providers to finally raze the longstanding wall between mental and physical health care, since reimbursements are based on patient outcomes. Potential benefits are obvious — people suffering from both diabetes and depression, for example, would be more likely to consult a doctor for diabetes treatment if their mental outlook improved. Conversely, depression might ebb in patients who keep their diabetes under control."

For anyone who went through chemo, didn't you just have some days where you were too tired and too sick and too sick of being sick to want to go through chemo and someone had to persuade you to go?

So maybe with this global payment system,which is not yet perfect and shows some gaps for some patients, will help with this. At this point, I am happy that I am not the only one who cares about the emotional side of being sick.