The Long Middle - Does the idea of “the long middle” reflect your experience?

I found this an excellent piece and yes, it did speak to me, especially in the sense that my priorities have changed. I no longer think I have endless time for personal accomplishments, but rather put my energy into love and wisdom.

I really appreciated the way the author articulated this - the “long middle” is the concept that I have found most challenging to wrap my head around in this first year + of my metastatic diagnosis. It is nice to hear the experience of someone farther in and also that she highlighted not only her perspective but some of the others within her community.

THIS quote from the article, YES:

"Living with stage four cancer has taught me that strength is not a metric of productivity or a narrative of 'recovery'. It is found instead in staying present within a life that no longer fits the frantic success stories we are sold. In a culture that fetishises the loud 'bounce-back', choosing to live gently, attentively and on one’s own terms is an act of quiet defiance."

I've finally, after five years of metastatic breast cancer, stopped apologizing for not Doing More. I live quietly. I cherish calm, and books, and scones. The day-to-day-ness of my life is unlike any of my friends, and I accept that their expectations for their lives are not my own. This is not the life I assumed I'd have, and it is still mine.

@eleanora yes!! And how wonderful that you met Kate Quinn, that was a delightful book.

I walk and also garden (they know me at my local nursery, lol) to stay active, and find pleasure in moving at my own pace. Some days I can haul butt, other days it's a stroll. Or a nap.

@sf-cakes

So glad to know you enjoyed the book. I bought it to take to the event so she could sign it, but haven't read it yet. She spoke about her next book, the main character of which will be an opera singer navigating the San Francisco earthquake of 1906. She said that it was her easiest story line to research, as she is trained as an opera singer herself. Looking forward to it. Happy that you have the space for gardens. "Playing in the dirt" was always a mood elevator for me. We downsized to a townhouse several years ago and I'm limited to a 3 ft. x 10 ft. strip between my driveway and the neighbor's driveway, as well as a 4 ft. x 12 planting bed in the front. I have managed to squeeze in pinks, hyacinths, daffodils, peonies, iris and hydrangeas so far. If you haven't seen the White Flower Farm catalog (Free), it's loaded with beautiful photos as well as advice and recommendations.

"Count no one poor who has the stars above, the quiet solitude of evening hours, and in their heart that rarest gift of love, and in their garden - flowers".

@goldensrbest

7 years, wow! That's impressive and encouraging. Long may you run! I'm at 4 years and have just been given the OK to continue with Kisqali, my first line treatment. Latest scans showed only two small bone mets which will be radiated in a few weeks, and I am still bone only. Recently had a very informative and positive second opinion conference at Johns Hopkins and feel fortunate to have found an excellent MO to add to my care team.

Claire - sorry to hear your news about coming off xeloda, but very glad to ‘see’ you here on the boards! Wishing you the best ❤️

@marcials1

Totally agree that things change as we age and, at almost 76, I am grateful for my current condition. Lots of joint pain, but I have arthritis in addition to MBC, so it's hard to tell what causes the pain. Palliative care has been very helpful with pain relief. Treatments have accelerated cataract growth, but easy surgery fixed that, and hearing loss, but new hearing aids fixed that. My MO asked what my goal is and I told her that I want to live long enough so something other than cancer kills me.

@katedsweet1

You truly are living a miracle and providing hope to those who are newer to "the middle". Long may you run!

@claireinaz

Completely empathize with the need for denial. Cancer lives in our bodies, but whatever we can do to keep it out of our minds and hearts is a victory. My husband is the only one who knows my diagnosis. I was convinced that once the information was out, it would become the primary and often only topic of conversation, and I refuse to live like that until I no longer have a choice. I think someone patting my arm and looking at me with pity would make me want to scream and run away. When I was diagnosed Stage IV in 2022, my MO advised that I should expect a survival of 48 months. I passed that several weeks ago with fingers crossed that I keep on going.

We also have the joy of travel in common. When I became Stage IV, I started booking trips and have visited 14 countries in the past few years (some of them more than once) as well as places in the US I've always wanted to see. Intrigued by your walking tour of the UK, which is my favorite place to visit. About 10 years ago I hiked the Cotswold Way and it was beautiful. If you don't mind, please share details. I would love to see them.

We are here for you and for each other. Healing thoughts and virtual hugs to all.❤️

Hope you have an amazing trip!

Does the idea of “the long middle” reflect your experience?

Yes. I completely relate to this article. I am slowly moving away from chronos time to kairos time although my job demands I continue to honor being accountable to the clock. But, I can feel myself slipping into a time where I can linger in joyous moments.

I find it easier to move through the long middle as only my husband and medical team are aware of my diagnosis. At the point of not having any pain and few outward indicators of illness, I am enjoying not dealing with the head tilt and constant question, “how’s it going?”

However, this article made me realize I would like to connect with others who are experiencing the “long middle.” Curious if there is a group that gets together and chats about this topic?

Habbi

Hi @soldanella and @mazoro.

I like both of your thoughts on the long middle. I think we really all feel the same but can’t always put it into words that truly capture our feelings. So thank you.

Marcia

@marcials1 @soldanella @sunnidays

Great to be chatting with all of you. I am curious, how are you filling your time?

For me, I like to be with friends and family. Several years ago I read Chasing Daylight. And in this book the author uses his remaining time connecting and creating meaningful moments with people who are important to him. This is a part of how we are using our time. We are reaching out more and making a greater effort to connect with those we care about. We say yes more often to invites. This has been extremely impactful. Choosing to engage more. I am enjoying this.

looking forward to hearing how you are filling your time

I too have MBC to the bones. I've taken all of those meds and more. Ive lost my hair twice and hate the idea of going through all of this again. I got down to 115 lbs at one point with all of the vomiting and diarrhea and food tasting very bad,even water was bitter. If anyone has taken Datroway, I'd like to know how soon the hair loss started & the mouth sore and nausea and diarrhea.

I identified with this article on so many points. Especially this line, “we have replaced the suddenness of the cliff with the tenuous permanence of the high ridge,” because even when we are doing well, the cliff is still right there - so close that you can't quite put it out of your mind.

“Chronically terminal” is slightly better than referring to Stage IV as a chronic disease, but I'm not still not sure it captures the essence of the long middle. The cliff is still “right there” and we've probably all known - or known of - someone who was sailing along next to that cliff just fine until, rather suddenly, they weren't.

Also, “the unsentimental task of deciding which relationships are still worth the oxygen they require.” I keep finding myself thinking life is too short to put up with drama, BS, or one-way relationships.

@sunnidays - I see you revised your initial statement about people who don't share their diagnosis, and I really do appreciate that. I will share my perspective. I didn't tell people, initially, because I wanted to have a better handle on what this was going to look like for me before I opened it for discussion ‐ and I was dx'd early in the pandemic, so my extreme fatigue was not clocked. Word still got out and, in that time, I had multiple comments to me about my religious status (!). I also had people asking me repeatedly how long I was going to be in treatment - once is okay, after that were they just not paying attention the first time? Maybe they didn't know how else to show concern. When we moved to a new state the following year, I didn't want to be defined by my disease - “that's the new girl, and she's sick,” and I really don't “look” sick. Now, I just don't want to talk about it with people who don't get it, and they don't need to know…yet.

@katedsweet1 - our dx and journey sound similar, and it's inspiring that you are a few years ahead of me. De novo dx 2020, very large liver mets (12.78cm), and still hanging in there with an inexplicably successful first line treatment (Verzenio/anastrozole) .

@mazoro - I think you will/would enjoy the Stage IV Zoom calls. Great groups people and great support.

@sf-cakes Thanks so much for this and that's really cool that the Times printed it. I liked the article that started this thread, written by a stage iV patient, better than the one in the Times, written by a physician. In fact, I also commented in the online version of the times: "I imagine that every patient faces death in deeply personal ways. Doctors may overestimate their roles in this. I say this as a stage IV patient. I don't really expect my oncologist to convey the meaning of life to me, though I greatly respect what they do well."