Cancer is often about quantity when it should be about quality.
Caring for my sister through her illness has been so many things. If I had to choose one word to sum it up, “overwhelming” would be that word. From the beginning, her disease was very progressive. Sadly, we did not get introduced to palliative care until we were four months into treatment. Upon diagnosis, I had heard of hospice care, but never palliative care. Had I known about the program and what it had to offer, they would have been a part of my sister’s care team from day one.
I have since come to learn that most people associate palliative care with end-of-life care. I think that the palliative care team has done more for my sister than any other service. Had my sister been treated by palliative care sooner, we would have been saved months of her suffering in pain and many needless emergency department visits.
Not only has palliative care been able to guide her along during this unpredictable journey, but they have also helped to guide me. To sit by and bear witness to the ravages of this disease and trying to come to terms with it was a battle. The hardest part of this journey, for me, has been accepting that she may actually die from this illness.
Palliative care has been an invaluable resource in explaining what that looks like and coping mechanisms to best prepare for that eventuality. When dealing with a chronic or terminal illness, it is easy to feel as if there is simply nothing you can do. By definition, palliative means, “to relieve pain or to alleviate a problem without dealing with the underlying cause.” Therefore, there is always something that can be done.
Through her illness, the biggest lesson that I have learned is that our story is like everyone else’s: different. The process of death is not an event that is the same for every human soul. It can come quick. It can be very long and involved. It is often complex, and it is rarely easy. No matter how it happens, there are not right and wrong answers.
As each stage of her disease, a new set of questions has raced through my head. What is going to happen? When will it happen? Will there be much pain? Living in anticipation of death is a feeling that I don’t think can be properly explained. Every day that someone lives puts them one step closer to death. Through a terminal or chronic illness, that is an ever-present truth.
For me, the acceptance of her illness has come after a long struggle to understand death, and to understand that what is important is the quality of her life while here, and not the quantity. That understanding would not come without the knowledge gained through the services that I was able to receive through palliative care. With their help, that understanding has changed my perspective of her illness. It has come with a fierce desire to want her to fully live out the remainder of her days in the best possible way.
With their guidance, I have been educated at every stage of her disease. I have been able to be prepared with the things that she has needed. Such has at-home physical therapy, a wheelchair, cane and a visiting nurse. This has allowed me to work hand-in-hand with her care team and to be her voice when cancer has prevented her from being her own.
As with many patients of a chronic or terminal illness, her condition is ever-changing. Like many before her, she is afraid to die. To her, that means trying anything to hold on. For me, it is hard to watch, and I know that as we go forward, it will only become harder. As she fights the process, like a snake shedding its skin, she will battle death to the end. For her, any hope of time is what she will take. Anything at all means a prolonged life.
Through the counseling of both in-patient and out-patient palliative, we have been able to speak about death. I know she is scared. I can't say how I would feel. For the longest time, it bothered me that she wouldn’t come to terms with her situation. I have been able to see a different perspective from those who have gone through this process many times.
Together, it feels like my sister and I have traveled many miles on this journey—miles of emotions as we have pushed through so many challenges, crossed bridges and went down paths that we never wanted to have to travel down. I haven’t a clue how much more time we have. Luckily, as she is now in remission, I feel an incredible sense of relief. Though she may sometime face a recurrence of her disease, for now, we have staved off what once the inevitable.
The services that palliative provides are readily available to any hospital patient where a palliative program is in place. What they have to offer for any chronic or terminal illness is something that I believe to be very beneficial.
I wholeheartedly think that these services should be embraced and not shunned, no matter if the disease is terminal or not. Through her palliative care team of pain management doctors, nurses, chaplains, volunteers and many others, I believe that she has lived a much better life through this disease than she would have otherwise done.