New Patient Discussion:
From my patient’s experiences
Many patients who become admitted to the oncology floors where I round remark to me that they have “never been sick” before this. If they had been in a hospital before they may have had a repairable cause such as appendicitis, a broken bone or even a cardiac issue. Now they have within a matter of days gone from having been ignorant of a cancer growing within them to being here in the hospital. Many are frightened, using words that are akin to a battle cry, and ignorant of what will come in the year ahead.
My first visit is a time for my patient and their supporters to meet me. In my first blog post I brought up the hurdles that need to be faced for me to even know if my presence might be a part of their coping while here. I find it rare when I can’t find a common ground to at least be able to share why I may become a part of their support team as well if they want to page me. If I am welcomed I ask a lot of questions to listen for what may be of help to the patient, their family and friends.
The following is a short list of ideas that I have found helpful from my patients perspectives and their experience:
- Bring an inexpensive notebook with you and a roll of tape. Most of the medical professionals who you will meet will hand you a business card. As you tape them into your notebook leave room to make notes. You may get a telephone number not listed on a card. You may want to remember an associate’s name who didn’t hand you a card. This is an easy way to keep a concise reference of your medical team.
- If you are the type of person who feels less anxious with having the most data, have a notebook with pockets or loose-leaf binder. If you keep copies of test results [not a necessary thing but if this is your personality] you will be able to have them in chronological order.
- ASK EVERY QUESTION and if you think of one when the medical team isn’t in your room write it down. Stress, no less feeling ill, may cause you to forget in the time the team is with you. Leave room again for a written answer if you think you may forget.
- Pain and nausea are like a freight train. They take more to stop them once they are zooming down the track than if the brakes were applied early on. Patients have told me they actually use less medications if they start earlier with these symptoms. Not every patient has them but those who did said early interventions helped them.
- If you are a family member remember your loved one will worry about YOU as they lay in the hospital bed. You actually will care for them by taking care of yourself. Don’t drive after dark if you aren’t comfortable. Sleep the night at home if you can. Eat healthy foods in smaller quantities if your own appetite has disappeared.
- Say yes to friends who offer to help. The satisfaction that you may have experienced in the past of helping one of your own friends will be the same for them. If you allow them to shop, cook, run errands etc then you can save your own limited energy for yourself and your family member in the hospital.
- Consider a phone chain to help relieve the story and fact telling every moment you are not sitting my your loved ones bedside. People care but the retelling can be exhausting. A phone chain can be helpful Another resource many of my patients use is a site: www.caringbridge.org It’s a confidential and fairly easy website to set up where you can post any or all information you want your friends and colleagues to know. They may also leave you messages. Many of my patients have exclaimed that even if they don’t post they can read the messages that were left for them.
- Set visitation time boundaries. Being in the hospital is not a time for everyone to visit. You are a captive audience and too many times there are too many visits that are too long as well. Be honest and tell people that you already have had too many today but then tell them when they could visit. Set a time limit. If you are feeling up to 20 minutes vs. 10 then you have the option rather than the visitor staying for 60 when you were falling back to sleep after 10.
- Always ask for what you need from the medical staff. Don’t assume anything. Ask for what you want too!! You’d be surprised how accommodating the staff can be if it doesn’t conflict with your treatments. In another hospital it was an underground fact that patients could get a milkshake if they only knew to ask. I admit I told many a patients about that.
- Forget the statistics!! The doctors are treating you with therapies they believe will make a difference. Statistics are good for the doctors to choose a treatment but I suggest you believe you are in the cure % unless they tell you otherwise. It's not a perspective of being an ostrich but one of grounded hope.
There are times when there are no clear answers, questions cannot be formulated, and there are no words. Those are also times to ask for me to sit beside you. Tell me, your Chaplain, what you are thinking, questioning, fearing and also celebrating. I am here to be an experienced listening presence as well as a practical resource.