Things you should bring to your first sarcoma specialist appointment:
Medical records, maintaining a copy of one’s medical records can improve communication with doctors and keep everyone “on the same page.” Important records include doctor’s notes, lab results, records of chemotherapeutic received that include the dates and dosages of treatments, and reports from pathology, surgery, and radiology. This information can usually be requested from the hospital’s department of medical records. Copies of scans on CD can also be requested from the radiology department or film library. Anything that you feel could help while communicating with your doctor.
Write a list of questions on a notepad. When you get in the oncology office, it can be a difficult and stressful time, and after the doctor is finished talking about the steps or plan going forward we often forget very important things we wanted to ask prior to our appointment. Put it all down on paper in the weeks or days before your appointment. Then you can cover anything that was not answered. Things became a bit overwhelming and confusing for me. I was glad I always had a list of questions, and every appointment going forward so I would not forget to ask concerns etc.
Being a patient with cancer is a challenging and daunting task. Here are some guidelines that may help you and your loved ones cope.
1) You are in charge
You can be in charge, and it is important that you feel in charge. It is proven the patient who does feel in charge in his or her own life and illness copes with greater balance than the patient who abandons hope.
2) There is a Doctor who can help
Patients with inadequate are may not have the doctor to lead their care who is the best person, for either their disease or their individuality. If you feel that you or your doctor are not coping with your illness, remember “there is a doctor who can help.” It is recommended you see a doctor specializing in your disease. Most importantly there is a doctor who can make you believe that you can be helped and that you can confront your fears and anxieties.
3) Family can help
You must allow them to help, but you also must be willing to take a stand when their efforts to help are not those that you need. Your family is desperately looking to find ways to help you, and the simplest help that you might not have accepted, when you are well, becomes a gratifying reward when you are not well.
4) Cancer is not punishment
Cancer is a disease, and should be seen as such. This is not a time to start blaming yourself for previous lifestyle, or punishment for attitudes or behaviors towards others , or for things not even known. You can not live in the past. You can’t change the past you must move forward. You can make changes going forward, but it has to be done in a way that utilizes your resources, strengths and weaknesses to get better not to get worse.
5) The Doctor can have a bad day, too
Some patients fail to realize there are days then the doctor may be having a bad day. The doctor should be allowed to have a bad day; however, this should be very rare. IF you feel this is more often than not, I would consult with another doctor to care for you and be sure you are being looked after with the best possible care.
6) Waiting is inevitable
in this day and age waiting is inevitable. Sometimes the better the doctor, the longer the wait. Be a wise patient and come prepared. Bring a book or music to alleviate the time spent waiting. Thoughtful doctor will apologize for the wait as well as allow extra time for your visit if you have a new concern or different problem. Many specialist when a new patient comes whether it will be a simple evaluation, or more complicated. He/she will not know how prepared you are or how much you know. Nothing consumes the good doctor’s time more than having to make the time to redefine the appropriate expectations of the patient, who has been sent with little or no forewarning of the seriousness of their illness.
7) Tears are ok
Laughing and crying are both emotions. IT is OK to laugh, it is OK to cry. They both serve a purpose in helping one get through any life threatening illness. Tears like laugher, can be shared. It is normal to feel sorrow and potential loss, sharing helps.
8) There isn't a single treatment - including no treatment at all- that doesn't have side effects
Some patients believe that all treatment should be risk-free and side effect free, and that is just not so. Doing nothing has a downside risk in anxiety, frustration and anger. Doing something is never without personal cost.
9) Most patients get better
We tend to forget that most patients, with sarcoma, do get better. So try not to dwell in the doom and gloom with a cancer diagnosis without understanding there is a very good chance you will get better.
10) Miracles can happen
Every physician, every patient knows of somebody who, apparently terminally ill, recovered to the amazement of all who were caring for him or her. Miracles can happen, but they just do not happen every day.
11) Do your best to stay in the now and live each day to your fullest.
None of us know when out last day will be, cancer diagnosis or no cancer diagnosis.