I vaguely recall hearing the term palliative care somewhere along the continuum of Gary’s cancer treatment. I distinctly remember breathing an inward sigh of relief that he hadn’t, to that point, required it because that would have meant we were in a hospice situation with little possibility of a good outcome in sight.
Had I been properly education on the true meaning of palliative care, I may have had enough information to sit down with our medical team and call in some experts to help with solutions to his fatigue, lymphedema, nutritional needs and more. Instead, we created work around solutions to his chronic needs. I became the in-house nutritionist, shopper and organic chef of all things that would go into his body. I also got trained in Reiki, massage therapy, cranial sacral therapy and reflexology so I could provide healing care at any time of the day or night.
Of all the things we dealt with, fevers and the lymphedema were what scared me the most. Being on watch after chemo treatments for spiking fevers indicating potentially life-threatening infections and seeing droplets of lymphatic fluid seep from his massively over-sized legs and feet could send fear through my body right to the bone.
Unfortunately for us, the term survivorship wasn’t being widely used yet. It was like living in a world where you were either dying of cancer or in remission. During Gary’s three years, he remained in the abyss between the two – always grasping for remission and running from death. The concept of quality of life in survivorship wasn’t the primary concern so palliative care seemed primarily reserved for those wishing to die with dignity and some control over the pain.
Today, palliative care is more often now being associated as the pathway to manage symptoms and side effects while increasing quality of life. But there is still room for improving awareness. Palliative care needs to be something survivors and caregivers are educated about right at diagnosis. Perceptions about it only being offered through hospice need to be shattered forever.
I no long quake at the word, palliative. It now has almost a soothing sound to it and translates to me as a vehicle for providing support and resources right from the start, not just as someone is nearing end of life. It’s time to completely severe its connection to end of life and redefine it as a tool for creating quality of life that falls more in line with its true meaning according to Webster’s dictionary of being relaxing, calming, comforting, reassuring and, yes, soothing.