Tag: Support

The Stuff after Cancer Treatment: Even When It’s Over, It’s Not Over

(Title image: Photo by Leon Seibert on Unsplash)

I stumbled across an article about another celebrity who has gone through breast cancer treatment. That’s not surprising, given the relatively high percentage of women, in particular, who have been diagnosed or are at heightened risk of the disease.

But this one—about celebrity organizer Clea Shearer (of The Home Edit, a home organizing company/brand/empire)—gave me pause for the specific reason that there was so much cancer-related hardship that continued after she finished her treatment.

In 2022, Clea was diagnosed with stage 2 breast cancer (“invasive mammary carcinoma”) and underwent the familiar treatments of surgery, chemotherapy and radiation therapy. However, it’s the complications of her double mastectomy that make her story very striking. To date (that is, as of the release of this article in People magazine a few days ago), she has undergone 14 surgeries and may be running out of options for breast reconstruction.

And just when you thought you were almost done…

This is not what anyone expects after they “finish” cancer treatment. In fact, Clea was declared cancer-free in November 2022. But it was clearly not the end of cancer-related effects for her.

I think it’s important for us to consider this when we try to be over-optimistic with cancer survivors. Pushing an upbeat attitude or telling survivors to “just be grateful” glosses over the reality of what they may continue to keep going through.

Yes, of course we are grateful. A cancer diagnosis is terrifying and for those of us who grew up when it was considered practically a death sentence, the idea of having it take your life is hard to get out of your head. In this day and age where social media describes the “condition” as d**th…well, cancer survivors have to meet the possibility head-on, minus the asterisks.

However long a survivor has survived is a cause for celebration and gratitude. But it’s not necessarily the end-of-story, fade-into-the-sunset ending. Clea’s experience is proof of that and I wish her strength and perseverance as she navigates the coming months.

Stories like Clea’s underscore the critical need to treat the whole patient, including offering emotional/mental health support, and not to simply stop the support when the cancer center-based treatment ends. Even when it might seem that treatment is done, it may just be the beginning of a new set of challenges.

Cancer This, Cancer That

(Title image: Photo by National Cancer Institute on Unsplash)

Cancer, cancer, cancer.

There is a part of me that would like to stop talking about cancer. Really.

My cancer diagnosis tops my “Worst Things I’ve Gone Through” list, more than any other crappy things that I’ve gone through. Treatment brought me to a screeching halt and forced me to rethink my expectations for what “success” looked like.

It wouldn’t be surprising if I wanted absolutely nothing to do with cancer and chose to never speak of it again.

However, I DID go through this. I WAS angry and frustrated and literally fearing for my life. So I want to own the fact that I faced one of my greatest health fears and was able to come out of the other end of the cancer tunnel.

Undoubtedly, most of my “success” was sheer luck and well-established medical protocols. There are many other cancer patients who go through the same thing but are not so fortunate. Until we know exactly what triggers the development of a tumor and can determine how to effectively avoid that, we will still be riding by the seat of our pants

In that case, isn’t it sort of odd to wear the “cancer survivor” badge like an achievement?

This goes without saying.
(Photo by National Cancer Institute on Unsplash)

And yet, it does feel like an achievement. Or perhaps, it feels like it gives me a purpose. The entire reason why this blog exists is because I had questions about the experience of being a cancer patient that I could not find answers for, and I wanted to offer what I had gone through in case it might help someone else.

As cancer recurrence became kinda, sorta, maybe less likely with each passing year, I still had an urge to let people know about the disease because it had been so huge in my life. At some point in a conversation, I’d stick in that I was a cancer survivor—it was hard not to, I realized, because there were so many ways that cancer had entangled itself in me.

And people would say congratulations for surviving and then the conversation would become a bit uncomfortable because no one really likes talking about cancer…and everyone would quiet down for a bit. I could easily keep going on about my experiences but I know I’d never get invited to another social event if I did, so I learned to shut up and change the subject.

This blog is my emotional, cancer-indulgent dumping ground.

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If someone mentions that they have a cancer diagnosis, I know what not to say first and foremost, but there’s a balancing act between allowing them the space to express themselves (especially if others around them don’t know what to say) and offering supportive bits of random information about things that actually matter to them.

In online forums, I’ve typed out a block of text…only to delete it before sending. Maybe it’s not as important for me to talk about what I went through as it is to simply be there to listen.

Why Does Mindfulness Have to be Expensive?

(Photo by Mackenzie Marco on Unsplash)

This past January, I was delighted to receive an email from work about a day-long mindfulness class being offered to help usher in the new year. What a great idea! I can think of no better way to launch into another journey around the sun than with a sense of calm and acceptance, and I felt myself puff up with enthusiasm.

But as I scrolled down for more details I saw that this retreat had a price tag. Good feelings gone. It was close to $100.

This was an experience offered by my workplace, presumably so that I could be a more mindful employee, and they were charging for it.

Need I say, work can be stressful?
(Photo by Alex Kotliarskyi on Unsplash)

I understand the importance of investing in yourself. It’s worth more than a monthly Netflix subscription and will get you much farther in life than a daily Starbucks run. Mindfulness experiences are where I want to put my hard-earned dollars.

But this past year was tough. I needed mindful guidance even more, and yet I kept coming across financial barriers.

Why does all this good stuff need to cost so much? Meditation costs absolutely nothing and offers infinite rewards, and yet, there seems to be a vibe out there that you must spend money (the right cushion, the most beautiful journal, the most blissful island retreat, the perfect yoga pants) in order to do this right.

I live in Southern California where the cost-of-living is high and so are many salaries, but not all. And the gap between those who live comfortably and those who struggle to get by is widening. There are so many who could use the grounding and calm that meditation can offer.

At the same time, I completely get that someone like a yoga teacher or a sound therapist in this area is also struggling. In order for them to be able to offer the services that they do, they must cover their costs.

Yeah, I know. All this mindfulness stuff seems to be unnecessarily pricey.
(Photo by Magic Bowls on Unsplash)

So here’s my wish for the remainder of 2024: Hey, workplaces! Yeah, you, the ones who expect a lot from your employees! Make sure they are fully supported in all aspects of wellness. Bring in a meditation teacher or a yoga instructor. Set up a quiet space for people to destress for a few minutes. Don’t expect your workers to shell out part of their paycheck for staying grounded dealing with your expectations.

And for the meditation teachers and yoga instructors and sound therapy practitioners and the like who are actually making a very good living…fine. Do your thing. Charge your prices. I know that trainings and musical instruments and sacred spaces aren’t cheap. There are people who can and will pay a premium for them to get a truly calming and magical experience.

But after that, please. Offer free classes in parks and libraries and community centers. Volunteer your time for a good cause (my favorite has been a charity yoga class at the local Humane Society). Look for opportunities to share your talents in the not-so-bougie parts of town.

It will make a big difference to people who usually are not usually shown such grace.

Cancer Survivorship Ain’t For Sissies

With all the focus on breast cancer during October, pushing us to be warriors and fight our way through this, the concept of survivorship can get lost in the fray.

We talk about cancer treatment and get very granular about the procedures, whether surgery, chemotherapy or radiation therapy. And those do deserve a lot of discussion as they can be difficult to endure. Some, like chemo, have an almost legendary reputation and it’s important to be able to separate fact from fiction.

After all the noise and attention associated with cancer treatment, survivorship can leave some of us feeling alone.
Photo by Atharva Tulsi on Unsplash

Consider: how many of us, upon hearing that we have breast cancer, preoccupy ourselves with worrying about what life will be like five years down the road? More likely, we’re thinking about what treatment will be like and are hoping that we’ll be around when it’s done!

But with so many women surviving breast cancer, it’s important to talk about what happens after the dust settles and you realize you’re on the other side of the treatment that you had so feared. Is it really the “other” side?

So much of my blog has been devoted to the life after cancer. After I documented my treatment journey, I turned around to get hit in the face with all the stuff that I wasn’t expecting.

One of those was endocrine therapy. Women with hormone receptor positive cancers aren’t done when the “tough stuff” is over. Tamoxifen and aromatase inhibitors are a whole new round of treatment that can affect your hair, your libido, your joints and more. Some women get hot flashes and night sweats. Some experience weight gain. And these are medications intended to be taken for a number of years.

There may be body image issues. Breast cancer surgery can leave women looking very different from their pre-cancer days. Like it or not, breasts are associated with womanhood. Whether lumpectomy or mastectomy, with or without reconstruction, there is a new normal that needs to be dealt with.

By seeking support and relating your story, you help not only others who are dealing with something similar in addition to yourself.
Photo by Ivana Cajina on Unsplash

And then cognitive issues like distractibility, loss of memory and difficulty processing concepts may come up. To make things more complicated, these may appear after treatment is in our rear view mirror and our loved ones may simply not appreciate what we’re dealing with. The bodies and minds of survivors may change in a way that they are not prepared for. Because, how do you anticipate something like this?

Survivorship does not mean that you never again have to think about cancer or its repercussions. There will be adjustments to your expectations as to how your life will be from now on. It’s important that those around you understand that just because you are done with the major cancer treatments, things might not feel familiar or normal.

So we need to be having this conversation with those around us and making opportunities for affected women to seek help and support. There is no shame in being a survivor who is also struggling. While it’s true that we are “lucky to be alive”, it does not mean that we have no right to seek a higher quality of life.

Don’t be afraid to talk about it. ❤

Kindness to Cancer Patients

REMINDER: Be nice to other cancer patients and survivors.

It feels weird to write that, because why wouldn’t you? So many of us who have had the cancer experience feel like we want to support and encourage those who come after us. We are driven to help. But that’s not always what happens.

Let me provide an analogy of sorts:

When I was pregnant with my first child, a daughter, I got an enthusiastic positive response from so many other moms. Everyone was ready with helpful tips and good wishes. At the same time, many also started in with stories of their own experiences, often times telling vividly about their struggles and pain and even, “Oh, girls are the absolute worst!”

Some experiences may leave us feeling “unfinished”, needing a kindred spirit to tell our story to. But we need to be aware of whose ear we’re bending.

Why would some women do this? I can only hazard a guess: perhaps because no one wants to listen to difficult stories. Childbirth is a momentous life event brimming with intense emotions that friends and family forget, but the mother in question holds on to because they are tied into so much of her. Her lingering feelings are brushed aside. No one else cares to revisit the labor pains or complications. As a result, tales of the experience are often not expressed until she sees another woman, a kindred spirit, embarking on the same journey.

So, too, with cancer. And it can be a difficult and awkward subject for many, cancer patients or not. Those of us who are breast cancer survivors may want to “talk about it”, and thankfully there are support groups for that. But friends and family may not understand the scope of the emotional fallout. We get comments like, “well, at least you got a nice set of boobs out of it,” and are expected to move on. Conversation over.

And then we see another woman going through this, and it’s difficult to resist inundating her with your own experiences and emotions, all in the name of letting her know that she can get through this, just like you did.

Does it help? Maaaaybe? But as we all know, everyone’s experience is different. What happens is that you’re not “preparing” her for what might come. You’re inducing anxiety in an already stressed-out situation.

I experienced this myself after my diagnosis, when, a week before my surgery, I ran into an aquaintance who had gone through breast cancer treatment several years before. And I know she was trying to offer support and make me feel better, but it didn’t. She made me anxious about my upcoming therapies, including ones that she not gone through herself. While my intent as a newbie was to share about my diagnosis because I felt that she would understand, I ended up being a sounding board for her concerns. Concerns that were valid, definitely, but not appropriate in the context of a very fearful cancer patient.

Offer support without taking over the conversation.

For the record, this was a lovely woman with whom I’ve had numerous subsequent exchanges. There was no ill-will intended. But it’s likely that she didn’t have many opportunities to speak to relate her story to other women, and given the chance, just needed to talk.

And I know that in my exhuberance to show support for other cancer patients, I’ve probably tripped over myself in an attempt to reassure too much. Offer too many hugs. While also trying to be noncommital about outcome. That’s a really messy combination.

So please, let us remember (and by “us” I mean myself!) that sometimes the best form of support for a newly diagnosed cancer patient is simply being there with them and holding space for what they may be going through. They will make their way through the experience, day by day, just like we did. There will be time to talk about the ups and downs of treatments.

But maybe not right now.

Treating the Whole Patient

Falling ill in the 1960s, my grandmother was never told by her doctors that she had pancreatic cancer. That seemed to be a fairly common tact when the outcome was bleak: there was no question the end was coming once you got a diagnosis, so why stress the patient even more? 

And survivorship? What was that? Surviving was a long shot and anyone who did make it through was told to be happy that they were still alive. Lingering side effects were considered a small price to pay. But with the advent of more effective treatments, the population of survivors has grown significantly. These days, there is a future for cancer patients, and with that a growing need to address the distresses that may plague former patients for many years to come. 

There are the physical repercussions that we often hear about, such as neuropathy, lymphedema and heart troubles. But more attention needs to be paid to what goes on in the space between patients’ ears. The psychological effects of cancer diagnosis and treatment can be just as, if not more, debilitating and long-lasting. 

It’s the pain no one else sees that hurts the most.

I am fortunate to live in an area of the United States with exceptional medical care and several highly reputable cancer centers. However, I’m even luckier that the particular hospital system my family is part of has gone to great lengths to make sure that they treat the whole patient, offering outstanding psychological support at the cancer center. Not only are there support groups and a variety of classes, but there are exceptional clinical counselors available to deal specifically with mental health issues associated with cancer. Based on what I’ve been told by patients at other facilities, such an enhanced level of emotional support is a rarity.

This is disappointing. We have finally chipped away at the stigma surrounding cancer and have improved the survival rate, but we have much more to do to support patients and survivors in treating the emotional effects of the disease.