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  • Writer's pictureBurt Rosen

Experience vs treatment - they aren't the same

I admit, I am still pretty new at this whole cancer thing. But one thing I learned very early on is that there is a COLOSSAL difference between cancer treatment and cancer experience.

What is cancer experience? According to the Burt Rosen Dictionary of HealthCare Terms (yes, I made that up and it doesn't exist), cancer experience is defined as:

  • Being a human being who is going through something difficult; how you deal with it and interact with the rest of the world while going through it

Lots of people talk about the cancer treatment part. What treatments are you getting? Are you on chemo? Who's your Dr? What does your prognosis look like (yes, someone actually asked a friend this question. better questions to ask would be "is it serious?" "will you be ok?" "is there treatment available?"), etc. Most support groups tend to be based on condition, not based on experience with the condition (or emotion), so support in this context is more like "use the gel to freeze the area on your butt before you get the injection" rather than "you poor thing, I remember going through that and here is how I coped, I hope it can help".

Why is that? Part of the reason I think that support groups are built on condition states is, in some ways, discussing treatments is safer and less vulnerable (and not everyone's comfortable being vulnerable). Treatment is obviously critical too and should be discussed but in my opinion, the two (treatment and experience) should be intertwined.

As mentioned, I haven't found groups for people based on when they were diagnosed (i.e. less than 6 months (newbies), 6 months to a year, over a year, etc). The types I have found are for conditions like NETs (one of my types of cancer) that have people like me who have been diagnosed in the past weeks or months AND people who have been living it for 15 years plus but the groups are really focused on how the disease gets treated. The disease is very individualized so I often find my mind drifting or multi-tasking (who me?) when others are talking because its not relevant to me or where I am.

The support groups benefit me in that I am making friends and creating my own support circle which is actually more helpful to me (again, important to note that everyone is an individual and has different needs so what I need isn't necessarily what you need).

So, what's my dream you might ask? I want to find (or start) support groups based on emotional support for the cancer experience. For example, instead of butt shot tips, I'd love to discuss topics like:

  • How do you deal with your family when you have cancer? How do you talk to them about it, what do you share, what should you expect?

  • This shit is scary. How do you deal with it? Drugs, surgery, doctors oh my

  • Friends, who are the real ones you should invest in and who can you let go? (I had a great conversation last night with a breast cancer survivor about how cancer helped her clean the "dead wood" out of her life, she no longer invests in relationships that aren't real or valuable.)

  • Meal trains. Do you need them? Do you want them?

  • How you deal with others. Honestly, how you help others deal with what you are going through.

  • Pity vs support, and don't write me off before I do (and I won't ever)

Imagine those conversations. Now THAT would help me. I could even get Kleenex to sponsor it!

One last thought. I am paying attention and looking for those groups who offer experience support. Cancer 101 is an org all about how to live with cancer and how to experience it. They do a great job helping you understand what its like to have cancer and what to do.

The event I went to last night (12/2/22) was put on by Fighting Pretty and was an amazingly warm, emotional and heartfelt time. Fighting Pretty (FP) is about helping women with cancer be strong and beautiful. There were 4 speakers and not one of them addressed treatments, they all addressed how they felt and how FP was helping other people feel.

So, to sum up a long post, the cancer treatment stuff is pretty covered. Treatments, meds, hospitals, research, clinical trials etc are all well covered and fairly easy to get info on. The cancer experience stuff, not so much. This is where we (I) need to do work to help more people deal with what they are going through.

If anyone has any thoughts I'd love to hear them! Please share! And if you know of anything like what I am discussing, please let me know!

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Nov 21, 2023

Burt - Healing Circles Global - a sister program of CancerChoices may be of interest. They are virtual circles (which you can also get training to host) where you share what’s on your heart. No advice. No fixing. Just sharing and deep listening and learning from others experiences. To me they are like a group meditation. A time to reflect and go deep about what matters most. A sacred space.

Burt Rosen
Burt Rosen
Nov 30, 2023
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Thanks Miki, I will check it out for sure!

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