I spent 8 long months in a city far from my own, undergoing intense chemotherapy and then an autologous stem cell transplant. Eventually, after a longer-than-I-would-have-liked stay in the hospital and another few weeks living close to the hospital in case of emergency, I was sent back home with a bagful of medicines and instructions on how/when/with what to take them.
Much discussion exists around the issue of how to get patients to adhere to their treatment regimen at home. I must admit I worried about this, too. When I first arrived back in my city, I felt a complete disconnect from the turmoil and commotion associated with being a cancer patient at a major cancer treatment center. I did not want to be that cancer patient anymore. I wanted to go back to my life precancer—progress in my career, energy to shuttle my children to and from their activities, enough resources to actually save some money, and the freedom to eat at my favorite restaurants. Though many friends kept in close contact with me during my treatment, during my absence their lives continued—as did mine—on parallel, but no longer interconnected, tracks: their kids kept going to the same schools, they got promotions at work, they continued to save some money, and they hung out at our favorite coffee shop. My kids and I saw our entire routine interrupted: some of them stayed in the same schools and flew back and forth to see me, others left school to be with me, we moved into a rented apartment in the hospital city while paying a mortgage in our home city, and we quickly descended to the bottom of the middle class from our once-secure financial position. Now home, I just wanted my old life back!
Yet, I could not have it back. Exhausted, I found that even some of the easiest tasks seemed beyond my capabilities. Standing up for more than 5 minutes was an ordeal. Keeping the house clean was absolutely impossible. Going back to the office seemed like a pipe dream.
The side effects from the chemotherapy and the stem cell transplant continued to haunt me. Nausea remained the norm, controlled only by the miracle drug prescribed to me to stop it. I tried to go out for nightly walks around the block, but after 2 days of attempts, I stopped, discouraged by my inability to make it without gasping for air, even at a pace that if it were any slower, could factually be called reverse. My first few weeks at home, rather than giving me tranquility, offered me little but treasured memories of how things were before cancer invaded our life and the bitter reality of what now was.
I knew I did not want to keep living like this. That did not mean, though, that I wanted to end my life. Certainly, I had some moments of severe sadness, sitting in my bed, too tired to get up, weeping. How could this have happened? Why did it happen? What would happen from here? But those moments were few and far between.
Also, admittedly, during my first couple of weeks at home, I wanted to disassociate completely from my role as cancer patient and the pain associated with my treatment. I took my “easy” medications (for me this meant the medications in pill form) rather regularly (if I was asleep I would miss a dose and not take one until I woke up). But I resisted taking my painful medication—a self-injection I was supposed to take twice a day—on more than a few occasions. Oh, certainly I had many justifications: it hurt and I did not want any more pain; I was not even supposed to have to take it, because the condition I was being treated for (a pulmonary embolism) happened 5 months ago, and though my doctor told me that I would need the medication for at least 6 months, a nurse at the hospital had once told me that some doctors required only 4 months of the medication, and I preferred to be in that category regardless of what anyone said; and that particular medicine, I convinced myself, was causing all my nausea and making my recovery much more difficult.
And regardless of what patients actually tell their doctors, I found out that my reaction to being home was rather common, or, at least, not uncommon, particularly for patients like myself who live in areas with negligible access to healthcare and with healthcare professionals of dubious merit. I spoke to a woman who, once sent home from the same cancer center where I was treated, took the “I no longer want to be a cancer patient” attitude to an extreme: she stopped taking her medicines completely after only a few weeks at home. As she told me, “Hey, if no one is watching, no one will know.” Last week I found out she was back in the hospital with another blood clot that most probably could have been avoided had she kept taking those darn injections.
I spoke to a colleague at work who, unknown to me, was a cancer survivor. We got to talking about our experiences, and he mentioned the pros and cons of being sent home. He shared with me that had it not been for his wife, who every morning put his pills in one of those pill dispenser trays, he would never have taken his medication. “It was hard enough to get those giant pills down when I already did not feel well,” he shared. “If it had not been for her, I would have said to heck (he used a different word) with the whole medication thing. I didn’t want this cancer thing haunting me for the rest of my days, and those pills just reminded me of how sick I really was.”
So, at least in my case, what strategies would have been helpful to keep me motivated to follow my medication regimen exactly, at least during those first few weeks of being home (I now religiously take all my medications)? I think the solution would have been rather easy: a series of phone calls—maybe once a week or so—from the pharmacist or another member of my medical team to check up on me.
You see, when I was a cancer patient receiving care at the cancer center, I went to the hospital several times a week. There, I was always asked about which medicines I was taking, when I took them, and when I took them last. Someone actually looked over that information and asked me questions to clarify it. I shared with them that I hated doing the self-injection, and though given sympathy, I was also encouraged to continue the injections and I did so.
Once I got home, though, I felt like I was thrown to the wolves, alone, to fend for myself. I was no longer amongst a swarm of cancer patients, all waging their private battles against an evil disease yet all united by the obligation to take pills and injections. No one was asking me if I was taking my medicines or if I had any concerns about them. At home, I was “the” cancer patient—different, weaker, and sicker than the rest. I was waging this battle completely alone, now, and I really did not want to be so unique.
Consider it a kind of culture shock. Patients who are sent home go from being checked up on several times a week to almost complete neglect. At first, we are not used to the neglect. It feels like “Out of sight, out of mind.” Though I do not consider my case of nonadherence extreme, and I did get myself back on track rather quickly, it all could have been avoided if I had just had someone, anyone, from my team personally check up on me. So, if you want your patients to adhere to their prescribed therapy at home, pick up the phone, and give them a call to ask if they are doing so. Even in this age of high technology, you might be surprised at how incredibly important a little human contact can actually be! l
MMA is undergoing treatment for cancer. She wishes to use her initials.