I was involved with the Breast Health Foundation and the Netcare Breast Care Centre as a surgeon allowing me the privilege to treat and interact with many women with breast cancer. On the 24th of August 2010 I had a heart attack and suddenly the tables were turned. In one fell swoop, I went from the treating doctor to the patient.
I had to change my medical perspective. As a solo surgeon, a member of the breast team and a member of a rather large contingent of doctors who treated me during my heart transplant, I feel qualified to comment on a number of issues facing, not only the newly diagnosed, but also those who have been in programs for longer periods.
All patients go through the well-documented phases of grief and healing when confronted with a major life event. Kübler-Ross’ model of anger, denial, bargaining, depression and acceptance is well known. We expect people to march through these phases in quick succession in order to make decisions that will affect our lives for many years.
I do not believe in doctor bashing. The majority of specialists in breast cancer have spent 11 to 12 years studying to offer their services to their patients. Most centers have made huge strides with the introduction of the multi disciplinary teams that are now standard. In the period when patients are in shock and lost in the flurry of advice either personal or from the Internet, I believe the medical practitioners are lifesavers. One is seldom in the position to make rational and well thought out decisions at this time. This is when we need them most. That being said, they are human and every patient must take responsibility for getting the best care that one can get. I have compiled five important techniques to make the process patient friendly and stress free.
Although you may be stressed and at times angry with the system or your doctors, the people that you will be dealing with are the administrative staff, nurses and practice managers of your doctors. Like you, they are equally frustrated with emergencies, consultations and collegial telephone calls which mess up their schedules.
I find being polite and making an effort to engage makes everybody’s life better. Over time, we all know that building relationships will help everybody feel more relaxed.
The newly diagnosed is smothered with paper work, medical aid queries and motivations – they may feel as if they are drowning. Those who are in the process have the problem of not knowing how to edit the mound of information they have had been handed. In addition, forms, x-rays, results and letters can get lost. Doctors and their staff deal with hundreds of files and often cannot immediately find the right file when you ask a question telephonically or ask for an appointment. Make copies of your own medical history and a concise table of your results.
This will make you more secure in the event that you have to see a locum or another doctor as they will have access to all these results immediately. It helps as we often see many different specialists in different clinics or hospital.
Make a list prior to a consultation with clear questions, or observations about your choices, treatments or options, as well as your current medical complaints. Make a copy for yourself and the doctor so you don’t forget important facts. We all have left a meeting only to remember half way home that we had forgotten to ask an important question.
4. Choose your “person”
Whether it is your spouse, a partner, a family member or a friend take them to as many consultations as possible. Firstly, the support buffers you and helps you make sense of the information, the second is for improved communication. All of us suffer from the broken telephone syndrome. If your “person” is there to listen and witness the communication, many of the misconceptions in terms of treatment, medication or content can be avoided.
When dealing with so many different aspects of one’s life, many minor details are missed. By creating either an email, or a computer folder it is easier to keep track of all the different elements. It also makes sense to check bookings for things such as mammograms or results. It is easier to get blood results from the clinicians before your consultation. Ask whether or not this is appropriate from the PA’s or secretaries in the practice as often there are standard results, or bloods which have to be monitored before the next treatment.