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“This is your new normal”. More than a few counselors said this to me and it was either coincidence or popular jargon. Yet they are right, as Norman started chemotherapy, our family slipped into a new routine, so to speak. Here is our story, one among many Folfirinox stories.
I won’t talk much about chemotherapy here; I think it is well known how sick it makes people. However, I did create a post about the courage that people find to endure chemo, in the name of life. Neither Norman or I wanted him to do chemo, but we chose to listen to the statistics; with chemo he might live longer.
By the time Norman had finished two rounds of chemo, we had a new normal. Human beings are incredibly adaptable, and I learned that very quickly during that terrible year. I was grateful for just a day without a call to a doctor, a day when he was in “ok” health, a day when he was not a pin-cushion.
We tried to live our lives; we didn’t tell a soul about his Pancreatic Cancer for about 3 months. The cancer support people said that it was a mistake. I disagree. We went to the pub on Friday night like we used to, we went to kid’s events at school, and we maintained the façade that everything was OK. I remember I got excellent at lying. There was enough time later on for everyone to rally around and feel sorry for us and offer help. While he was still healthy enough to appear in public, it was bliss to be ourselves.
What Options Are There Apart From Chemotherapy
The Oncologist DID tell us that it was an option to NOT do chemotherapy. That was it, and the lack of information means I don’t really know how it might have played out. However, a small corner of my heart says “what if he hadn’t done chemo”?
After Norman died, people reached out to me from all around the world via the supportive Instagram community. Someone mentioned to me that their friend had struggled so much with the chemo and the side effects their life was lost to them. They too wondered whether they would have been better to live 3 or 4 good months than 9 largely horrible ones. Those 9 months – a lot of the time in hospitals – was not our life. It was someone else’s life, and we knew it. At least we grieved the loss of our old life together.
My advice is only to “seek opinions” and do consider what committing to chemotherapy and classic medicine entails.
We’d received an invitation from a healer in Peru to live with him in his chemical-free, organic home in the Sacred Valley. He’d suggested to never start chemo and to never allow the body to become weakened by traditional drugs. Norman and I talked about it, but we weren’t brave enough to go against the system.
We also didn’t understand the role of Palliative Care. It seems as though we all associate Palliative Care with dying, but they are actually about the quality of life with a terminal illness. We should have asked more questions around not receiving chemotherapy and how long he might have lived with the pain medication. I wonder if he would have had a better quality of life that way.
So if you are wondering whether chemotherapy and traditional medicine are right for you; do ask the questions around “what does not receiving chemotherapy mean”? How long might I have if that happens? What else should I expect?
Important note: I do not want these musings to be misconstrued as regret. It is not regret, but it is frustration that I don’t feel we had the guidance we needed to make the best decisions for Norman’s last months. But if you find this post perhaps at least you can ask that question, “What if I choose not to do chemotherapy?”
The Stats – Folfirinox Stories
If you find our posts, this is what Norman went through:
Folfirinox modified – 6 rounds
Gemcitabine Abraxane – 4 rounds
Capecitabine – 2 months in conjunction with 28 doses of radiation.
When Norman finished radiation, and we expected that he would have some degree of health. About 10 days after finishing his last dose of radiation I now know that his cancer started to grow. They call this cancer progression. They don’t tell you what it means for your family.
Interesting & Useful Folfirinox Stories And Resources:
Pin It> A New Normal: Chemotherapy And Routine, Folfirinox Stories