January 23, 2014
By: Lorna Larsen (Shanna’s Mother)
A diagnosis of cancer in your child is devastating. You become caught up in a world of cancer treatment that is both foreign and frightening. You put your faith in the health care system and trust in the medical professionals that hold your child’s life in balance. Most young adults will survive the journey, a few will not.
Our daughter, Shanna (Shan), was an artist, swimming instructor and figure skating coach who loved to work with children. Shan’s dream was to teach. Shan was diagnosed late with metastatic breast cancer and passed away a few months later. Shan was only 24.
Shan spent two months in a regional cancer centre. Many of the hospital guidelines used for young adults on the floor were developed for older patients. I wrote this blog to share practical tips to help improve the hospital experience for young adult patients and their families.
If your child requests that you be kept informed, have the consent in writing. Verbal consents may get lost in the hospital bureaucracy. You should also seek professional advice and investigate the need for power of attorney. Ask the doctors and nurses to keep you informed about the disease, tests, and treatments. You need the information in order to know the questions to ask. Review any written material and ask for clarification in areas you don’t understand. Your own Internet searches may also assist you with questions to ask. Be prepared to problem-solve.
SEEK OUT A PATIENT REPRESENTATIVE OR ADVOCATE
Most treatment centers have a professional patient advocate or navigator to assist patients and their families during hospitalization, and to provide clarity around any concerns. Seek help when needed and ask for their assistance. If an advocate is not available call on nursing or other hospital staff for assistance.
BE PREPARED TO “HURRY UP AND WAIT”
Treatment centers expect patients to be ready when called on for tests, but the patient can be left waiting for transport back and forth, or waiting because of a backlog in testing. The system is not always set up for the seriously ill patient. Try to anticipate any medication or meal requirements for your loved one during lengthy times away from their hospital room.
BE PREPARED TO BE CHALLENGED AND FRUSTRATED
Despite the fact that patients are told that they are in control of their cancer care, the hospital system rarely allows for this flexibility. Try to hang in there. There will be some successes and some failures. Call on your supports and your child’s supports; they may be able to help.
PROVIDE COMFORTS OF HOME
When permitted, bring in your child’s favorite food and other personal items to assist with his or her hospitalization. Their own comfortable clothing and pillow or blanket can make a world of difference. Hospital consent to use laptops or tablets will allow your child to access the Internet and his/her accounts to connect with friends.
ASK FOR A CONSULT FROM OTHER SPECIALISTS OR OTHER CENTRES
Cancers in young adults are relatively rare and your regional treatment centre may not have all the answers. If things aren’t going well, if the doctors appear to have run out of options, there may be lessons learned at other centers. This may require persistence and support from your advocate. An outside opinion may be helpful.
LEARN BASIC DAILY CARE AND COMFORT MEASURES
Hospital rooms are extremely dry. If permitted, a small humidifier may be helpful. With serious illness and after receiving chemotherapy or radiation, your child may require extensive mouth and skin care. It may be beyond the ability of the nursing staff’s time. Simple comfort measures such as back and foot massage and application of heat (heated blankets) may assist with pain control and comfort. Nursing staff can assist you in learning these basic skills. Friends may also wish to help.
USE YOUR SUPPORT NETWORK
Call on your friends, your child’s friends, your extended family, neighbours, and co-workers to assist if you are with your child 24 hours a day, 7 days a week. Meals, assistance with basic care, and moral support can help you and your child throughout the hospitalization.