Tidbits of information I have learned as a patient…
First and foremost, it is critical to have a caregiver with whom you are very close and who can truly look out for your best interests. Not only do they provide comfort and support during the endless procedures and during times when you feel lousy, but they also hear and see things that you as the patient miss. I was sedated during chemo and as a result l did not hear exactly what the nurses were saying regarding my care and available options. However, my wife did and frequently responded on my behalf after we had discussed the issue.
I honestly cannot imagine how anyone could go through what I have experienced in the past year without a close caregiver. My relationship with my wife throughout it all was a true partnership – from agreement about what I would eat to making sure I got to the hospital on time in the morning. Basically, all I had to do was be the patient – she cooked, maintained the apartment, shopped, drove, communicated with friends and relatives, interacted with the nurses, techs, and doctors, and provided me with endless love.
I also cannot overemphasize the importance of dialoguing with other patients. This is as important as reading the manuals, protocols, and other information provided by MIRT. Other patients represent the human side of myeloma treatment. You soon realize that you are one of many enduring the treatment protocols for myeloma – some are ahead of you, some not s far along. It feels good to share your experiences and to learn from others. And, believe me, you do learn – everything from what worked for some with constipation to where to eat in Little Rock.
I also found the Wednesday evening support groups hosted by the myeloma social workers to be extremely helpful. Similarly, this is a learning and sharing experience. What I perhaps found most gratifying was sitting and talking to new (or not so new) patients who were overwhelmed and scared or who had just received bad news. Yes, patients need to talk to doctors and nurses and loved ones during such times, but other patients also play a critical role in helping you to cope and get through the tough times. All patients, when they are able, should attend the Wednesday evening support group meetings. These meetings should be viewed as an integral part of one’s treatment.
Patients need to read up on myeloma and myeloma treatments so that they can have good interactions with their doctor as well as other patients. The Education Center is a fantastic resource and every patient should try to take advantage of it. I do not subscribe to the “doctors always know best” viewpoint – they are not infallible. I believe that your treatment will work best if you view your relationship with your doctor as a partnership. I believe that patients who are reasonably well informed may not suffer the same degree of anxiety and, at times, hopelessness as those who simply place their fate in the hands of their doctor.
It is important to keep in mind that no two days of cancer treatment are the same. It’s true! A particularly bad day never seems to be followed by one just as bad or worse. I didn’t believe this at first, but came to appreciate this bit of wisdom as time went on. Patients shouldn’t worry too much about the future. The MIRT staff is incredible at fixing problems that arise, including making you feel better. Again, remember that you are not in this fight alone.
One way that I coped during days when I felt lousy or was particularly drugged up was to lie in bed, put on headphones, and listen to NPR or a Bernie Seagal tape. During such times, watching TV or a video was not a good diversion – I simply felt too lousy – sometimes even to sleep. However, for me, something about lying there with a headset on listening to something that did not require a lot of concentration seemed to help. Often, I would do this for hours on end. I often fell asleep with the headset on. What is important is that each patient tries different diversions until he or she discovers what works best.