Let me start this column by saying that I am, as a medullary thyroid cancer (MTC) patient, probably more predisposed to mental health challenges than others. However, as every patient diagnosed with a life-threatening chronic illness can likely attest, hardly anyone makes it through something like this without it having a major impact.
I can confidently say, I am not the same person I was before I received my diagnosis. I have grown in many areas, but I have also developed extensive new struggles. Some of these trials are easier to deal with than others. A few are more related to thoughts about life expectancy, end of life, symptom management, and the constant fear of succumbing to a regression, increased disease progression, and more treatment.
Another area that often rears its ugly head of mental health struggles for me personally happens anytime I have to return to the cancer center for appointments and tests. Leading up to any appointment my anxiety is usually very high. Sometimes to the point of needing more than my daily dose of anti-anxiety medications. I often need to add something like Ativan.
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My mind most of the time goes to the worst-case scenario, even though I have been considered mostly “stable” over the last few years. This is true for simple appointments, such as blood draws, but even more so for scan days and meetings with my oncology team.
Over the last few weeks, I have received a few phone calls from numbers at my work I didn’t recognize. Once I checked my voicemails and heard they were from the Cancer Center, the anxiety came right back with a vengeance.
Luckily my employer and co-workers are very supportive and let me make the return phone calls while at work. Otherwise, I am just a bundle of nerves and hardly able to concentrate on my job. The questions of “What did they find?” and “Why are they calling at an unscheduled time?” are almost paralyzing.
Most often than not it is simply a check-in to arrange the next scheduled appointment or a reminder for my next blood work. The mental strain, however, is something that is very difficult to explain to someone who has never gone through a comparable situation.
Walking into the cancer center is a very similar feeling. I walk through the hallways and look at the people around me. I wonder why they are there? I wonder if they are the patient or if they are a support person in a cancer patients’ life.
Since completing my radiation treatments in October 2016, I have not dared to walk back down the hallway where treatment is provided. Being on the same floor as that hallway is already enough to induce sweaty hands and increased heart rate for me. I have received other treatments on that floor, but the radiation was by far the longest and most grueling of them all.
The first few scans I had, be it PET scans or CTs, I was actually able to fall asleep while having them done. That feeling of peacefulness is long gone. Oftentimes now, I seem very ‘calm’ and ‘peaceful’. However, on the inside, I am fighting the quelling anxiety at every turn. While in the actual CTs, I have started counting the seconds to get my mind off what actually is happening.
The days leading up to any test result are also very anxiety-filled. For me personally, it manifests in sleepless or very restless nights, intrusive thoughts of “what ifs” and worst-case scenarios. I know when I think about it logically, more often than not the result will say that I am stable, however, the possibility always remains that something has grown. The possibility remains that I will have to start some sort of treatment again. It is an absolutely terrifying and almost paralyzing feeling.
Once I am sitting at an appointment, I have to make sure I wrote a list of questions in the weeks leading up to the meeting that I can refer back to. Otherwise, I will for sure forget some of the most burning questions on my mind, simply because I can’t focus long enough to actually remember what I was going to ask.
Sometimes, this also means that I leave the doctor’s office with a lot more questions. Either because I forgot to ask them or because I heard the doctor say something that I didn’t quite understand but couldn’t ask at the moment.
Besides referring your patients to therapy to deal with these thoughts and triggers, I am not sure what else could be done from a medical professional perspective. Although, maybe being aware that this is most likely an experience your patients go through, will be helpful for you to understand them better.
Read more about MTC patient education
I have found it advantageous when doctors have recommended that I write down my questions for them to answer. I was also encouraged to record my conversations with my medical team. That way I could go back and listen to their explanations again and ensure that I understood everything told to me.
If your hospital allows the same, consider recommending this to your patients. It is very helpful in relieving anxiety when able to go back and realize that what I thought they said, was actually not exactly what was said. Therefore, it is less negative than I had colored it in my head. It has been a very anxiety-reducing activity for me.
