Dear Dr. Camardi,
Nine years ago, you got me through the worst time of my life when you found my breast cancer during my yearly physical.
I know for a fact that the only reason I'm still here is that you found it early and steered me through all the chaos. I mean, you were like a manager of a team and you just set up all the players, gave me a game plan, and it was automatic — from biopsy, to surgery, to chemo and follow-up. I always had something to do and could focus on moving forward.
You sat Ed down [he passed 2 years ago] and told him what to say and what to do. It was like you told him to make sure he was always doing something to help. Well, my daughter in Tucson got hit with the same damn news at the beginning of the year. Because you made a point of gently telling her to be checked every year even way back then, I think they found it early.
The reason I'm writing you is that she keeps yelling at me. I tell her that I'm there for her, and she says "That's b------- — everything's so crazy here — I don't know what I'm doing anymore. You're useless to me." Well, as I'm alone now, I was able to go to her but I just feel lost. I can understand the anger but why lash out at me? I have to admit, I'm feeling a little sorry for myself and in pain over what she's going through. Anything you can offer would be really appreciated.
— Fontana, California
Great to hear from you, but sorry about the news.
Let's face it: both of you are in an uncharted, vulnerable and uncomfortable space right now. Think of how your mind was back then, as well as your emotions when we started our journey with cancer. I think your mind was racing off in a dozen different directions all the time, non-stop to the point that you just couldn't think straight. There were too many balls in the air to be juggled and you really wanted someone just to simplify things so you could figure out the "big things" while others took care of the" little things."
Just realize that she is an adult with her own responsibilities and cares that you have to be sensitive to. The challenge is to be of assistance without being too intrusive upon a very private time that rather screams for practical support without cheesy sympathy.
Telling her "I'm here for you" is vague and just adds to her confusion because that gives her another task, another decision, another person to deal with. In fact, all this will just make her more irritable.
So, what do you do? First things first: don't be put off at the start by attitudes. Believe it when I say, "it's not about you." So, you may start doing something only to get micromanaged. Over time the atmosphere will soften but this is not the time to dig in your heels and insist on your way of doing things. This is really important when it comes to children, as they sense acutely any negative atmosphere and after all they are involved in all this anyway, so just go with the flow and keep things safe and positive.
I think the overall approach is to anticipate needs and then act to accomplish them. Just realize there are many ways to get things done to ease the burden of necessary chores. Indeed, Chores such as laundry, meal preparation, gardening and house cleaning top the list along with play dates for the kids and transport.
A caveat about take-out meals. Sure, it's easy and quick but the salt as well as the caloric implications of take-out food may have unintended consequences on such susceptible diseases as heart disease and diabetes. So be careful.
When offering to help, volunteer two or three options. An example of this would be, "What can I do to help? I can clean, shop fold laundry, whatever you need." If nothing else, it should start a dialog for the future.
Let me address a key safety issue: driving. A patient who is dealing with a difficult future is, to say the least, distracted. It would be fair to say, I think, that they are working with many distractions that could result in a lack of consistent concentration behind the wheel and regrettable as well as avoidable accidents. Do the driving for them to doctor visits and especially after any treatment sessions. They need time to process the information they received from the doctor, which may well leave them distracted from the road and also may have drugs in their system, which would be a driving risk.
Become the designated driver, and you might as well be the designated scribe, as well. This means, take careful notes about the context of visits and the instructions given. The sheer volume of information given during these times is complex enough when healthy let alone when facing a health challenge. Consider recording the visit so as to avoid any confusion later on. In fact, I have found that notifying the provider that they are being recorded actually improves the clarity of the information and instructions given, so don't be afraid to do so.
Also keep in mind that many times patients need to vent, by which I mean just talk and get the anxiety out and believe me, it needs to get out. Simply sit there and listen. You may get a sense that they are not really talking to "you," but they are really simply talking to themselves, out loud. Let them roll along, and try not to interject too much, because your reality is far different from their reality.
Finally, and I know there will be those who have trouble with this, but just take their hands and pray together. Prayer brings moments of peace and unity when dealing with an unknown journey up a steep mountain.
In that moment, it works better than any drug I know. And, there are no side effects.