If you haven’t already read the first part of this topic, Language, Part I, you should go read that first. It gives the context for this post and some necessary background. In that first post, I talked about the first of two scenarios where the language utilized in responses to a vulnerable post was (or could be) harmful and the language to use in its place. I do realize that this can be a controversial subject since we are all so very different; at the same time, I think there are some universal lessons about how we communicate with someone who is struggling that we can all learn.
The second scenario I wanted to share is my own experience.
On March 10th this year, I had a PET/CT scan that demonstrated the medication I’m on is still working and there is still no evidence of active cancer (a/k/a NEAD or No Evidence of Active Disease). For those of you who have been keeping track, this is the 3rd PET/CT in a row with this result. The result does not mean that there is no cancer in my body or that I’m no longer terminal or that I can stop taking medication. The result simply means that the cancer in my body is not metabolically active to the point that the scan can detect it. It means that the medication is doing its job of keeping the cancer at bay FOR RIGHT NOW.
When I posted this news, there was an outpouring of congratulatory messages. The number of people in and outside of the MBC Community who celebrated with me was quite frankly pretty overwhelming and definitely humbling. I appreciate every single person who took the time to post, comment, send me private messages, share my news, etc. If I can be a small part of providing hope to someone else, then all the effort of sharing my experiences and being vulnerable so publicly is worth it. We all need to know that it is possible, that there is hope, to be able to keep going.
In addition to the congratulatory messages, I received quite a few messages from people who insisted on knowing “my secret.” These messages included a variety of probing questions about complimentary or alternative care I must have sought out, insisting that the results I’ve received are because of something I’ve done outside of traditional care; something special. I was asked about supplements, mushrooms, killing stem cells, RSO, and several other substances tamest escape me. When my responses did not give various people the answers they were looking for, many of the conversations went sideways and I take full responsibility for my part in that because I get frustrated.
I get the impulse to try to replicate the path I’ve followed to get to NED/NEAD.
I’ve watched the experiences of others very closely to try to figure out the same thing, how my experience could parallel theirs.
We’re all desperate in one way or another to find a durable, replicatable cure.
Here’s the thing for me. Yes, I’ve combined both Western and Eastern type perspectives/treatment in my experience with cancer. Yes, I’ve sought out various doctors and various ways of looking at cancer. Yes, I’ve not always followed the traditional standard of care exactly because I’m an outside of the box thinker and I’ve sought out doctors who think that way too because we’re all so very very different and a one size fits all approach to cancer doesn’t work for everyone. Yes, I’ve been a significant driver in the care I’ve gotten and many of the doctors I’ve received second opinions from have commented on how they might not have recommended the choices I’ve made. I take full responsibility for those choices too. Yes, I take a variety of vitamin supplements closely monitored by several doctors. No, I don’t take mushrooms, would never take RSO, have no idea why anyone would want or be able to kill stem cells and the other things were just gross.
I don’t have a secret.
I’m super open on this platform and others about what has worked for me, what I’ve tried and why. I’ve done my best to support my body with supplements and acupuncture and yoga and energy work, etc., while I take advantage of the best science can offer. When I tell people that I’m an open book about what has worked and what hasn’t, I’m absolutely telling the truth. Nothing is hidden and every time someone asks me about what I’ve tried or what I’ve done, I’ve answered as best I can.
I am keenly aware that my experiences and the results I’ve received from the treatment I’ve chosen often don’t match the median statistical data. I am an “n” of one. There is no guarantee, no way to reliably predict how any one person will respond to treatment.
I wish I had a secret that I could share. If I did, I’d be shouting it from the rooftops. I have no reason to hide something so precious.
Seriously, though, I get the desperation of all those people who contacted me and I wish I had something to share. Watching so many dear friends decline and die with the same diagnosis is a special kind of living hell. If I had something, anything, to ease their suffering, I’d be over the moon and again, shouting from the rooftops. No one would be able to get me to shut up if I had something to offer.
Just like the language I talked about in Part I, this kind of communication is not only a waste of time but it’s also demoralizing and dismissive. We have to lift each other up and support each other in this cancer experience, not demand more information. We’re so much stronger together when we support each other.
And I promise to share if I find anything resembling a secret to surviving terminal cancer. I want to survive too.
9 thoughts on “Language, Part II”
You have been vulnerable and generous here, sharing physical, emotional, spiritual, psychological highs and lows as well as the extensive knowledge gained from your research. The suggestion that you would hide or withhold lifesaving knowledge would be laughable if it were not so heartbreaking, both for the hurt it inflicts on you and for the desperation behind it. 💔🙏
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Appreciate you, my friend. I try to keep reminding myself that it is the desperation to stay alive (that I share) that motivates people to ask these kinds of questions.
Is having a “genuine” concern for others a secret?
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I suppose I hope that that is clear from everything I do but perhaps it isn’t?
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I cried as I read this, thinking of all that you do to support, help, encourage & advocate for others, in the midst, of all the suffering you have experienced while on this journey…I know that if you discovered some “magical cure”, everyone would know! I also know how hard you work to communicate clearly, openly and from your heart. Don’t ever stop. I’m so very proud of you…hugs
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Thank you, Mom. I was really shocked by many of the messages and how upset several people got with me.
Reblogged this on By the Mighty Mumford.
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