What I Wish They Knew

What I Wish They Knew

Suggestions on How to Hold Space For Love Ones Recently Diagnosed With An Illness (Part 1)


This post was originally published in my Living My Legacy substack channel.


If you have been following me on social media, you would know that last November I was re-diagnosed with breast cancer. My first breast cancer diagnosis happened 10 years ago when I was 37 years old and last year two different types of cancers were found on my other breast.

Did you know that breast cancer is the most commonly diagnosed cancer in women, and accounts for 1 in 4 annual cancer cases worldwide?


statistics on breast cancer in EU
Source: https://www.europadonna.org/breast-cancer/


World Health Organization: Scope of the problem: In 2022, there were 2.3?million women diagnosed with breast cancer and 670?000 deaths globally. Breast cancer occurs in every country of the world in women at any age after puberty but with increasing rates in later life. ? Global estimates reveal striking inequities in the?breast cancer?burden according to human development. For instance, in countries with a very high Human Development Index (HDI), 1 in 12 women will be diagnosed with breast?cancer?in their lifetime and 1 in 71 women die of it. In contrast, in countries with a low HDI; while only 1 in 27 women is diagnosed with breast?cancer?in their lifetime, 1 in 48 women will die from it.


The numbers don’t lie.

Breast cancer affects many women and as such affects many families. The truth is, breast cancer was not only happening to me, it is also affecting those who love me.

I know this deeply as my mother passed away from metastatic breast cancer at the age of 49. I carry the pain of losing her even up until now.

I also remember how painful it was to share with our kids the news of the re-diagnosis. I saw the panic and worry in their 15 and 16-year-old eyes and the remembering of how challenging it was to navigate the treatments 10 years ago.

Breast cancer or any illness within the family for that matter is difficult. When we receive news about any diagnosis, we might be unsure on how to take it in. What I am about to write about now is for those who are on the other side of the situation.

This is the start of an article series where I will write about how to hold space for people navigating breast cancer diagnosis and treatments.?


This is for you if…

  • You would like to know how to be present for a loved one who is recently diagnosed.
  • You would like to know simple do’s and don’ts when it comes to holding space and communicating with a loved one going through treatments.
  • Are genuinely interested in reflecting and working on your own coping patterns.
  • You would like to deepen your skills in being empathetic, caring, and attentive to your loved one’s needs.
  • You would like to understand yourself and your relationship with illness and death.

If in any way you find yourself feeling resistance or tension in any of the statements, I encourage you to peel the layers around this resistance or tension. Where is it coming from? What sensations, thoughts, images, feelings, or memories are coming up for you??

Holding space for love ones going through cancer diagnosis and treatments is not for the faint of heart.

It requires deep introspection on how we want to show up and be present for our loved ones without shrinking away from our feelings, sacrificing our boundaries, and overriding what our nervous system/body is telling us.?


FIRST THINGS FIRST

Before we look at simple tips and strategies on how to hold space for loved ones waiting for a diagnosis or going through their treatment journey, I invite you to first look inside yourself and how you feel about illness.?

We carry a lot of biases and perceptions and we bring these in the conversations and interactions that we have with others. Considering that someone you know and love would be in a very vulnerable state if they are still waiting for a diagnosis, it is important to take a step back and examine ourselves first.

Here are some reflection prompts to start us off:

  1. What is your relationship with illness?
  2. What thoughts, sensations, feelings, images, memories, or even judgments come up for you when you think of illness?
  3. Where and how do you feel these thoughts, sensations, feelings, images, memories, or judgments in your body? (You can find the list of feelings in this previous post.)
  4. What is your earliest memory or experience with breast cancer? Or with someone with an illness?
  5. How did that experience or memory influence your perceptions of illness?
  6. What insights are you gleaning about yourself from these reflection questions?


BEFORE THE MOMENT OF CONFIRMATION

This is a heavy period.

Your loved one may be receiving devastating news. It is natural that you also feel a lot of uncomfortable emotions that might get you in?fight, flight, freeze, fawn, or flop responses.?

Given the schedule of such an appointment is known in advance, I suggest that you ground yourself before the event. We can practice self-compassion to care for those parts that may feel confused, disoriented, frustrated, or even angry.?

This exercise of “Caring for all parts” can support and prepare you in advance for such a heavy meeting.

EXERCISE: CARING FOR ALL PARTS

Give yourself uninterrupted time to do the following visualization and reflection exercise. My suggestion is to block an hour to do the journaling and processing and perhaps another hour to just sit with what came up after this exercise.?

  1. On a piece of paper, write down all your thoughts, worries, feelings, questions, and judgments about the upcoming appointment. Some sentence starters are:
  2. On a separate page, draw a circle representing how big or small you feel about each sentence. Write each sentence in a circle (one circle per thought/sentence). This would look like a page with multiple circles with varying sizes).?
  3. Think of all of these circles as?“parts”?inside of you. For example: “A part of me feels uncertain and anxious about the results whereas another part feels angry that my loved one is in this position in the first place. Another part is afraid of what the future holds if the diagnosis is confirmed.”?
  4. Look at each part and connect it with your?yearnings. Use the yearnings card below and try to peel the layers off each feeling or judgment to really tune in with the needs behind them. Write down the yearnings inside the circles.
  5. Now look at the circles with all these parts and yearnings. What are you noticing? What is this exercise revealing for you?


When we unpack these thoughts, feelings, and yes even our judgments, what gets revealed to us is the depth of our yearnings. These are signals pointing to what matters most for us and how we would like to bring in more of these needs in our relationship with ourselves and with others.?

If you feel resourced enough, try to also do this exercise with your loved one. Support her in connecting with her yearnings and what these thoughts and judgments can show her about her needs.


PRO TIP:

Before any trip to the doctor or any treatment, ask your loved one, what are the best ways that she would like to be supported before, during, and after a session/appointment.?

My wish is for us to move to the Platinum rule:?Do unto others what others would want to be done unto them.

This means we might have our own ways of giving comfort and care and ways in which we want to receive comfort and care. But that might not be the case for the other person. Asking days in advance (and please not on the day itself!) and having a “care plan” is helpful.?

Personally for those within my inner circle, here are some ways on which I would like to be supported:

Before a session:?

  • Connect with me about how I am feeling. Ask me what sensations, thoughts, or even memories are coming up. Given my history with hospitals and treatments, I might feel jittery about going to the hospital (again).?
  • If possible, invite me to a date. Sitting outside for tea or brunch helps me to be reminded that there are other parts of me that I can tune into and nurture as well.?
  • Make sure I get a lot of “plant therapy” Let me enjoy nature, and trees, or be surrounded by greenery. Plus points if there are mountains too!
  • I would love to bask in a lot of connection time and be surrounded by good friends, amazing food, giggles, or music. Even the sight of teenagers singing the karaoke brings my mood up.

During a session (while waiting)

  • Co-regulate with me- let’s do some breathing exercises together or some light touch like having and/or EFT.
  • Don’t tell me to “be strong” or “be calm”. Telling someone to calm down while in a heightened state of arousal is ineffective. Use validating techniques to hold space for me. (more of these later!)

After a session:

  • Connect with me physically- I would need more holding of hands, more cuddles, or even kisses.?
  • Bring me to a place where I feel secure or comforted (Hint: plant stores work well!).
  • Avoid bringing me to places where I am expected to focus or concentrate on attending to others.?

How would you care plan look like, sound like, and feel like?


THE MOMENT OF CONFIRMATION

If you are coming with your loved one for the appointment to discuss the biopsy results, these are some ideas on how to show up at this moment of discovery:

(For ease of writing I will consistently use the pronoun “she” about the loved one with breast cancer. I acknowledge that this might not be a preferred pronoun by everyone.)

  • If she is comfortable with it, offer a point of contact - hold hands, have a hand on the shoulder or knees.
  • Allow her to cry. All emotions are welcome including yours.?
  • Give her space to express what she is feeling.
  • Give her time. Try not to rush her.
  • If she is having difficulty articulating her feelings, this is also ok.?
  • Repeat her words back at her in a gentle voice. Your calm presence supports her in her?co-regulation.??This brings me to an important point: Quickly check-in with your own nervous system!

Stay tuned for part 2 on The Power of Checking-in and Understanding Your Window of Tolerance!


Hi my dear,

I know this series is deeply personal for me. Not only because of what I have been through but also because a very dear loved one of mine is also going through breast cancer treatments. Given how this experience affects a lot of us, I find it important to start putting to words what I feel are essential on how to show up for each other.

As ever, I am curious how these are resonating with you. Do message or reply here with your thoughts. Please do share this with people you know who might benefit from this work.

Hiraya manawari,

Lana


Rachel Cometa Estuar

Systems Change Advocate & Lifelong Learner| Community Convener| Innovator| Justice, Equity, Diversity & Disability Inclusion+| Resource & Social Capital Strategist| Neurodivergent #BillionStrong #SDG #Peace

1 个月

What a beautiful gift of yourself & your story of hope and resilience.

Lana Kristine Jelenjev

Community Alchemist, Speaker, Healing-centered engagement and HOPE (Healthy Outcomes from Positive Experiences) facilitator, Safer and Brave Space Designer, Author “What’s STRONG With You?”

1 个月

Thank you for reposting Rick Hutchins ??

回复
Kel Dylla

Education Leader & Advocate

1 个月

This is a very meaningful and generous post - thank you for sharing.

Liz Weaver

Co-CEO, Tamarack Institute | Schwab Foundation - 2023 Collective Social Innovation Award Recipient

1 个月

Thank you Lana Kristine Jelenjev. This is a gift to those walking through this journey. ??

Cinthya Sopaheluwakan

I help organisations with rethinking systems & regenerative strategies | Founder, The Big Picture - Systems, Strategy, Storytelling | Futures | Decoloniality | Featured in Forbes

1 个月

Thank you for this Lana. Sending you love.

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