Training to Handle Dying or Life-Changing Illness

I’m just getting started. If you read my latest post, you’ll have a clue without a lot of re-hash of where this is going. That post concentrated on the problem, mostly on the patients’ side. Please forgive me as I slip occasionally into that mode from time-to-time, but I’ll try to stay focused. This is not easy to write.

Doctors deal with death easily. “Easily” in they don’t have to tell the patient and they tell the family and leave. With patients who you have to tell bad news: the incurable illness, the crippling, painful death that will occur in weeks, months or years–results vary on their bedside manner.

Now you thought I was going to blast away. I wasn’t, but I was fortunate to have a team dedicated to deal with what needs to happen and more when I was diagnosed with tongue and throat cancer. All the cancer is supposedly gone now–except the waiting it might come back in five years. The constant testing and re-testing, and treating of the side effects of radiation, chemo and surgery. Once the treatment was done or on my return visits, most of the doctors and staff were aware and made me feel good for the moment.

However, that moment goes away. The constant follow-ups and re-testing to make sure it hasn’t come back or manifested itself somewhere else in your body and what awful things are they going to have to do now. Will I have to speak by means of a machine or controlling my belching as I’ve seen on TV or will I wither and die? What about seeing my kids grow up? How is this affecting my wife and others?

Do I need to talk about depression?

Re-branding when you can’t do what you used to do? I used to be an actor. My voice is not awful now, but I doubt I have the range I used to. I suppose I could be a different character actor? Forget the audiobooks, speaking engagements, day to week-long training sessions–too strenuous and require much more vocal variety than I can give now. My life as I knew it disappeared with the diagnosis, and pretty much after the treatment so did the kindness. You’ll know in six months the whole effect radiation and chemo does to your body. My actual treatment was six weeks, but the radiation and chemo keep working on the good cells that are left. This info is glossed over in the beginning–after all they are saving your life. Whose life?

“At least it’s better than the alternative.”

I don’t know how many times I heard that one, and still hear it from people who don’t know what else to say.

Good news for me though. I just became the Artistic Director of Spotliters, a community theatre in south New Jersey; its a great group and it feels great to be wanted. I’m writing more now, but my passion will have to shift and I have to pull a lot of energy in writing, coaching actors, directing, and coaching new actors, teaching a board of directors about theatre to keep busy. I have two more books nearly finished, and a novel to begin. I will continue this blog as long as Carter will have, and you’ll have me. I’ll try to keep it focused on training and development. This is off-track a bit, I admit.

Related is that I do a blended night class a week of Public Speaking (eight days in-class and online homework and prep) and signed on to teach some online only courses down the road.

But I did like my old life and its hard to let loose of those dreams–especially the older you get. The psychologists I’ve seen have confirmed what I already figured out for myself: tough-minded, always fix things in life, put yourself through school, an achiever faced with cancer is lost and depressed.

Reinvention is necessary. I knew all this before I started, but doctors only know how to review to other doctors. Upfront they might have information, but unless you go to them, it doesn’t appear they look for the information. And you know what stuck feels like, like drowning…

You would think there would be a lot of support groups; there aren’t–and I live an hour from New York, twenty minutes from Philadelphia. You would think in that market there was help available from people who have been there, people going through it. People who specialize in the aftermath (not afterlife); it wasn’t my plan to die right away and I don’t think it is the plan of many who don’t survive the aftermath of treatment for the reasons I have expressed.

You don’t necessarily need a psychologist to tell you have PTSD and you’re depressed; you need doctors who can at least direct you to help. You may need a psychiatrist to give you a pill to make you temporarily forget who you are.

Trainers who deal with change and changing attitudes, motivators are perfect to pick up the ball and run with it. Make sure the cancer docs know your name, your group and what it does for patients after care. Give lessons to medical people that goes beyond what they learn in school.

Older and sick people are not children; they want control, some control. My wife took off six weeks from work to help feed me through a tube because I didn’t want to think about it. I took my food through the tube (it was tasteless anyway because of the radiation and chemo) but I did it to take a break from having to drink enough of the stuff all day long. Three months after treatment, I can taste a little, but the bulk of my calories come from the shakes I make so creatively. I also taste some of the chemicals and preservatives because I don’t have all my taste buds. Something not spicy to someone else is fire in my mouth. My sense of smell is so enhanced the smell of grocery produce practically makes me ill. Food still smells wonderful; I just can’t taste it.

It’s not that the medical staff don’t try to help after treatment, but their concern is medical and keeping you alive, and most come from a science and math background. Frankly those people are generally fact-based and may not seem as empathetic or sympathetic as we are.

Doctors and medical staff do seem quite proud of themselves as they leave the office thinking of how much good they accomplished and they have a right to be proud. However, you go home wondering how you are going to sleep and if you’ll even wake up. If something else goes wrong, what then? Emergency room and you won’t see your doctor there.

You will hate it. You know something else is wrong. Nurses may even tell you “not to ring so often because they have other patients, too.” It happened to me. I couldn’t do anything without help, and I had to wait hours for a bad attitude.

Specialized training beyond medical school is the answer. It’s not just psychology courses either. Ever meet a psychologist or psychiatrist who can’t hold a conversation unless it’s work related?

No, this has to do with communication, listening skills, and relating to others. These are skills trainers can do best. In fact, develop a program that deals with patients who suffer the after affects and turn it into a group training/help group for patients.

The doctors, nurses and med-techs from my experience know others need training. Sounds like a good gig to me. It would help to have patients who could help, but it is close to home. You’d have to watch that carefully.

For more resources about training, see the Training library.

By the way, I’m quite up to speed now so check out my website. I may not be doing audio books or acting, but I’m writing more books. My novel, Harry’s Reality, is out now as well as The Cave Man Guide to Training and Development. My next two short non-fiction books have to do with the real life application of theatre as an exploration of the human race and its sometimes odd, but understandable, behavior from an unusual perspective.

As for Harry’s Reality, here is a man who can’t remember a part of his past and can see the reality once in a while–that reality other people never see. He wants it all. And he wants his life and his world back. Vote for Harry Bolls for President. Happy training.

One Reply to “Training to Handle Dying or Life-Changing Illness”

  1. There seems to be a ton of bloggers who talk about this issue, but few that mention a training program. A grounded program that grows as it learns more about the different experiences–and one that works with doctors and medical staff are in position to save lives. Whereas a blog can’t do it all; it can only suggest and the research is minimum.

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