It’s about the patient

A couple of years ago, I received a message that a family friend, Floris, had been diagnosed with leukemia. From the time I learned about her diagnosis, I was concerned. I knew she wasn’t allowed visitors due to her poor immune system, so I wasn’t able to see her except for some occasional online chats. But last summer my mother informed me that she was not doing well. I had the urge to see her so I paid a visit at the hospital where she was being treated. We talked for hours, pretty much about everything. It was nice listening to each other after not having seen each other for a while.

During my visit, Floris expressed some concerns about continuing her treatments. She had stopped tolerating them. At the time, she was a candidate for immunotherapy. Her doctors started her on a new chemo regimen, but sadly, the cancer was too aggressive and her body wasn’t able to recover enough to continue with the new treatment plan. The doctors said that there was nothing else they could do for her. This was upsetting, and I couldn’t help but wonder if there were other options for her at other hospitals.

I began searching for trials and hospitals that might offer a second opinion. I informed my mother, who was also worried about her friend.

I suggested a second opinion because it is what I would have done in Floris’ situation. (It’s what I did when I was originally diagnosed.) But Floris decided she did not want to pursue more treatment options. She decided to go back home, outside of the U.S., to see a naturalist. I knew what that meant. It was difficult for me to accept it. I wanted her to live. But Floris passed away a few weeks later.

After I received the news that Floris had died, a thought crossed my mind. I thought Floris made the right choices for herself and did cancer her own way and that alone should give us a sense of peace. It was about her.

We sometimes get caught in our emotions and hopes and fail to see the fact that sometimes patients get tired. Sometimes they reach a point where they’ve accepted their mortality because the collateral damage has reached its peak. Sometimes there really isn’t much we can do – not doctors, not us, and certainly not naturalists. All we can do is be present and respect their choices. This definitely doesn’t mean giving up. It means accepting the things we cannot change nor have control over.

As cancer patients, we should be allowed to own our decisions — and we shouldn’t need to defend them. I know sometimes this can create controversy and upset among loved ones, and it can make an already difficult situation even more confusing and stressful for we patients who are trying to proceed with our treatment plans. In this case, our family friend chose both options – conventional medicine as well as the alternative option – because it was what gave her the most peace and control.

I might be left to wonder whether her decision to see a naturalist was a reflection of desperation or a reflection of her acceptance, but does my wondering even matter? Another patient might choose something else. And these decisions are OK as long as the patients are the ones who make them. (Of course, I am NOT OK with people who take advantage of a patient’s desperation by offering false claims about cures — but that topic is for another discussion.)

As fellow patients, we all carry a responsibility. It’s fine to offer our wisdom and experience when we are invited to. Personally, I am a believer of leading with scientific evidence. However, sometimes there are patients that would rather take a different route. As much as this may hurt, we have to let it be. Accept it. Respect it.

Patients must have the last word when it comes to treatment plans and their lives. And no matter what our place in their lives may be, it’s always about the patients.

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About thesmallc

I'm Rebeca. I was diagnosed with breast cancer at the age of 32. But there's more to my story: I am an animal lover. I love to cook. I have a wonderful fiancé who doesn't mind walking my rocky path with me. We currently live in New York. ---------------------------------------- “Those who have a 'why' to live, can bear with almost any 'how'.” ― Viktor E. Frankl
This entry was posted in Awareness, c World, Family, Loss, Support, Treatment and tagged . Bookmark the permalink.

9 Responses to It’s about the patient

  1. Perla Rowland says:

    Good to have you back!! El martes, 24 de julio de 2018 2:44:34 p. m. GMT-4, The small c escribió: | thesmallc posted: “A couple of years ago, I received a message that a family friend, Floris, had been diagnosed with leukemia. From the time I learned about her diagnosis, I was concerned. I knew she wasn’t allowed visitors due to her poor immune system, so I wasn’t able to” | |

  2. Julia says:

    Thank you for your beautifully written and much needed reminder to allow each other to live their decisions without shaming, controversy or even loving, well-intentioned bossiness. I feel like printing this out and keeping copies on hand for providers, family and therapists.

    I’m terribly sorry for what Floris went through and the pain of loss that you and her family are suffering. You have honored her in a beautiful, loving and authentic way that will keep her spirit alive in the hearts of many who never even knew her.

  3. nancyspoint says:

    Hi Rebeca,
    I’m sorry that Floris died, but so glad you had a chance for that special visit. What a lovely memory. It’s hard to say if Floris’ decision to stop treatment, go home and seek a naturalist was a reflection of desperation, acceptance or a combo, but like you said, it doesn’t really matter. The decision was hers to make. Sometimes it is hard to accept choices others we care about make regarding their ill health, and yet, the greatest thing we can do for them perhaps is to honor their choices. Thanks for writing about this and welcome back to blogging! You’ve been missed.

    • thesmallc says:

      Hi Nancy, thank you for your words and for the warm welcome. I have to remind myself that each person makes their own decisions about their health, especially when it comes to family, which can be a bit challenging. We care. But it is not up to us.
      I look forward to catching up.

  4. Pingback: Weekly Round-Up | Journeying Beyond Breast Cancer

  5. bethgainer says:

    Rebeca!! I’ve missed your posts and am so glad you are back, especially with this excellent one. You are right: Floris made the right choice for her, and we (society) are in no place to judge anyone’s medical decisions. Sometimes patients get to that point of acceptance of death, and it doesn’t mean they simply gave up. Loved this post about patient autonomy.

    • thesmallc says:

      Hi Beth! Thank you for the warm welcome. Absolutely, every patient should make the last call. And I know it is hard for the loved ones when we want them around for as long as possible. It is a difficult topic to address. Perhaps there should be more resources available to families and caregivers, to help everyone involved cope with this reality.

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