Any stay in the hospital is fraught with fear and anxiety for both the patient and family members. When hospitalization becomes lengthy, life can feel like it is spinning out of control.
Fred Roth knows firsthand. When diagnosed with acute myeloid leukemia (AML), he spent 90 days in the Huntsman Cancer Institute (HCI) hospital that included 25 days of high-dose chemotherapy before a bone marrow transplant (BMT).
Fred focuses on the positive aspects of his long-term stay. “I feel lucky to have been treated at HCI,” he says. “Not only was I in a top-notch cancer facility, I was in the hands of incredibly dedicated and caring health care professionals.”
During the course of his treatment, Fred and his wife, Kathy quickly discovered they had a part to play in his recovery. They decided to make a plan.
“Feeling sorry for ourselves was not going to help me get better,” says Fred. “So we devised our plan of the “Four Stays” that helped us get through it.”
Here is what Fred and Kathy suggest for patients and their families facing a long hospital stay:
1. Stay Positive
- Avoid self-pity. It will not change your situation and it could slow your recovery.
- Make every day count. Dwell on the things you love, not your illness.
- Take it one day at a time. Things change fast with illnesses like AML, including infections, drug reactions, and donors who renege on their pledge. A leap to panic is often a waste of energy, and inaccurate. Decide to not consider a negative outcome when a more positive outcome might be in store.
- Have a strategy for the bad days…and there will be bad days. Focus on things that make you happy. For example, Fred loves nature and enjoyed using headphones to listen to soothing music while watching nature outside his window. Looking at family photo albums, listening to books on tape, and watching movies may also help lift spirits.
2. Stay Involved in Your Treatment
- Keep a journal of all medical activities, including the stop and start of all medications and your reactions. This will facilitate conversations with your doctors and nurses, and just as important, it will make you an active participant in your care rather than a passive victim of your illness.
- Consider it your job to help the doctors make you well. Eat to keep your energy up.
- Have a plan to help you navigate what lies ahead. “HCI personnel were always helpful and willing to allow us to be partners in my treatment,” says Fred.
- Be open to a mentor, someone who has been down the road you’re traveling. Broaden your support team and build a hospital community.
- Add comforting touches to your hospital room. Things like throw pillows, family photos, children’s artwork, and get-well cards all go a long way to make your surroundings more cheerful and comfortable.
3. Stay Active and Busy
- Go for a walk or get some other form of exercise if you’re able. Fred felt well and energized during most of his hospital stay, so he regularly walked laps around the hallways. In fact, Fred’s doctors attribute his speedy recovery to his being in excellent physical shape.
- Get out of bed every day. Create an area for eating or working by setting up a small table or laptop stand.
4. Stay in Touch
- Try to keep a routine. This provides a sense of control and consistency during your stay.
- Communicate with family and friends. Use e-mail, blogging, and social media as instant ways to connect with loved ones.
Other Helpful Tips
- Because of Fred’s compromised immune system, he and Kathy found it helpful to have a system to sanitize items that were brought to the hospital.
- Fred found that some gifts, while well-intentioned, can be problematic. Certain plants, foods, and personal care products aren’t allowed due to a compromised immune system. Talk with your health care team if you have any questions or concerns about what is OK.
- Other helpful items: soft T-shirts and a fleece jacket or vest, books and DVDs help to pass the hours, and meaningful items such as photo albums or encouraging messages from loved ones. Fred’s message to all those with an extended hospital stay: “We’re all in this together,” he says. “Good care, good vibes, good wishes, good luck.”
- Be conscientious about acknowledging messages and communicate on a regular basis. When family and friends don’t hear from you, they wonder and may worry.
- Talk with your nurses, doctors, and other members of your health care team. They are there to care for you and help you get well. Even after you go home, send updates to let them know how you’re doing.
Learn more leukemia in our cancer types and topics, or visit the Blood and Marrow Transplant Program webpages.