Newly diagnosed: being brave and fearful at the same time

Posted by Denise @denisestlouie, Aug 29 7:24am

I think of myself as a strong independent woman capable of solving most issues. When I look in the mirror I see someone who is 20 years younger than I actually am and I feel the same in my soul. The passed 2 years have challenged that view. I'm 2022 I suffered with a bowel obstruction that disabled me for 6 weeks. The doctors at the hospital i was admitted were not competent enough to know to diagnosed or treat my issue and miss managed my care at almost every point of contact. Eventually I had surgery and discovered I had been living with undiagnosed Crohn's disease. It didn't present in the normal way, until the bowel obstruction. I believe the experience traumatized me. It's taken 2 years to work through that and to be honest it still haunts me. I took that diagnosis seriously and I transformed my life to support my body to live in a way to create health. Then nearly 2 years later I'm diagnosed with a rare aggressive form of cancer that has a poor prognosis, Mixed clear cell and serous uterine cancer. That was 9 weeks ago. I'm a fighter, a warrior, a determined person. I find myself moving from we got this. I'm beating this disease to the next day feeling the gravity of my situation. I watch the people around me breakdown in fear and I feel its my job to lift them up. I don't speak openly to them about my own fear. Its to hard to watch them react to me. I do have a therapist who has agreed to be the person I can share my fears with. She said she was honored to be that person for me. I wish I was s tine traveler. I go back and do things differently. I blame myself for not being good to my body. I feel like I did something wrong to cause this all to be happening to me.
This is not who i see myself as being.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Dear Denise, @denisestlouie

Your strength and resilience inspire me. You've faced unimaginable challenges, from the traumatic experience with Crohn's disease to the recent cancer diagnosis. It's understandable to feel overwhelmed and uncertain.

Firstly, please acknowledge that you're not alone. For the past 18 months, someone said to me that I have been living in my head. Perhaps that's true for many of us - we've been living in my head because we don't want to bother folks with our angsts. Our feelings, fears, and doubts are valid. It just takes immense courage to admit vulnerability, in general, and I'm happy you have a therapist to help, in particular.

You've already demonstrated remarkable determination and adaptability by transforming your life to manage Crohn's. Now, focus on harnessing that same energy for cancer treatment.

Remember:

1. You are more than your diagnosis.
2. Your worth and identity extend beyond this challenge.
3. You've survived difficult situations before; you can do it again.

Trust in:

1. God's plan and strength.
2. Your medical team's expertise.
3. Your inner resilience.

Don't blame yourself; cancer is often unpredictable. Instead, focus on:

1. Self-care and compassion. Eat for nutrients, not just to feel full. Avoid sugar and carbs.
2. Mind-body connection (therapy, prayer, music, walks in the park or yard, meditation, etc.).
3. Surrounding yourself with positive support. Find at least one person, you could call in the middle of the night or go with you on appointments.

Celebrate your strengths:

1. Your 'strong, independent woman' spirit.
2. Your ability to lift others despite your own fears.
3. Your proactive approach to health.

You are:

1. A warrior, fighting for your life.
2. A survivor, with a story to share.
3. A beacon of hope, inspiring others.

Keep moving forward, one day at a time. Allow yourself to feel emotions, but don't let fear define you. You are capable of overcoming this.

In addition:

1. Continue journaling to process emotions.
2. Foster open communication with loved ones.
3. Celebrate small victories.
5. Seek support groups or online communities like this Mayo Forum. Stay positive.

Keep shining... you've got this!

REPLY
@ccwill

Dear Denise, @denisestlouie

Your strength and resilience inspire me. You've faced unimaginable challenges, from the traumatic experience with Crohn's disease to the recent cancer diagnosis. It's understandable to feel overwhelmed and uncertain.

Firstly, please acknowledge that you're not alone. For the past 18 months, someone said to me that I have been living in my head. Perhaps that's true for many of us - we've been living in my head because we don't want to bother folks with our angsts. Our feelings, fears, and doubts are valid. It just takes immense courage to admit vulnerability, in general, and I'm happy you have a therapist to help, in particular.

You've already demonstrated remarkable determination and adaptability by transforming your life to manage Crohn's. Now, focus on harnessing that same energy for cancer treatment.

Remember:

1. You are more than your diagnosis.
2. Your worth and identity extend beyond this challenge.
3. You've survived difficult situations before; you can do it again.

Trust in:

1. God's plan and strength.
2. Your medical team's expertise.
3. Your inner resilience.

Don't blame yourself; cancer is often unpredictable. Instead, focus on:

1. Self-care and compassion. Eat for nutrients, not just to feel full. Avoid sugar and carbs.
2. Mind-body connection (therapy, prayer, music, walks in the park or yard, meditation, etc.).
3. Surrounding yourself with positive support. Find at least one person, you could call in the middle of the night or go with you on appointments.

Celebrate your strengths:

1. Your 'strong, independent woman' spirit.
2. Your ability to lift others despite your own fears.
3. Your proactive approach to health.

You are:

1. A warrior, fighting for your life.
2. A survivor, with a story to share.
3. A beacon of hope, inspiring others.

Keep moving forward, one day at a time. Allow yourself to feel emotions, but don't let fear define you. You are capable of overcoming this.

In addition:

1. Continue journaling to process emotions.
2. Foster open communication with loved ones.
3. Celebrate small victories.
5. Seek support groups or online communities like this Mayo Forum. Stay positive.

Keep shining... you've got this!

Jump to this post

Thank you

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@naturegirl5

@denisestlouie Your emotional pain comes through in your post. I am honored that you chose to share your story and your fears here. To live with bowel obstruction for so long without relief until surgery and then you finally received the diagnosis of Crohn's disease. From what you've written here I can imagine that you have done everything you've been advised to keep the Crohn's disease managed. And now your recent diagnosis of mixed clear cell and serous uterine cancer. All within a few years is just too much for one person to handle.

I am filled with sadness and compassion for you. I do see that you are resilient. You may have hours or days when you feel like crumbling into a heap of anxiety and sadness but because of your resilience and determination those feelings do not last long. Is that accurate? Your resilience shows up in finding a therapist you can speak with directly and frankly about your fears. I'm thinking that your therapist creates that safe space for you to say and feel whatever comes up without the worry of holding up the person sitting across from you. I do know what you mean here. When I was diagnosed with endometrial cancer one person I worked with said immediately "do you know what caused this?". I wanted to shout (but didn't) "No!! And what difference would that make now?!!". And now whenever I see her she gives me "that look" and I want to cringe when she asks about my health. I do have family and friends who showed up for me then and still do that now. They listen and they do not judge. Have you figured out yet who such people are in your life?

I don't think any of us can claim that we did everything possible to be good to our bodies. Sure, we may have maintained a healthy diet, exercised, refrained from smoking or alcohol, tried to minimize stress. But for every minute of our waking day? I sure didn't do that and yet like you I wondered if I did something wrong. This is my way of saying that I have felt this worry about what "I did wrong" and blamed myself.

I learned a meaning of Hope that is most helpful for me and perhaps for you. Hope is the expectation that something good will happen because you are working with your cancer care team and you have a treatment plan that you are following.

How do you care for yourself when you feel overwhelmed?

Jump to this post

This level of women supporting each other is amazing. Empathy. I often feel isolated because no one talks about Lichen Sclerous or vulva cancer. It is rare but also has limited to no research and as a result limited options for effective treatment.

REPLY
@ccwill

Dear Denise, @denisestlouie

Your strength and resilience inspire me. You've faced unimaginable challenges, from the traumatic experience with Crohn's disease to the recent cancer diagnosis. It's understandable to feel overwhelmed and uncertain.

Firstly, please acknowledge that you're not alone. For the past 18 months, someone said to me that I have been living in my head. Perhaps that's true for many of us - we've been living in my head because we don't want to bother folks with our angsts. Our feelings, fears, and doubts are valid. It just takes immense courage to admit vulnerability, in general, and I'm happy you have a therapist to help, in particular.

You've already demonstrated remarkable determination and adaptability by transforming your life to manage Crohn's. Now, focus on harnessing that same energy for cancer treatment.

Remember:

1. You are more than your diagnosis.
2. Your worth and identity extend beyond this challenge.
3. You've survived difficult situations before; you can do it again.

Trust in:

1. God's plan and strength.
2. Your medical team's expertise.
3. Your inner resilience.

Don't blame yourself; cancer is often unpredictable. Instead, focus on:

1. Self-care and compassion. Eat for nutrients, not just to feel full. Avoid sugar and carbs.
2. Mind-body connection (therapy, prayer, music, walks in the park or yard, meditation, etc.).
3. Surrounding yourself with positive support. Find at least one person, you could call in the middle of the night or go with you on appointments.

Celebrate your strengths:

1. Your 'strong, independent woman' spirit.
2. Your ability to lift others despite your own fears.
3. Your proactive approach to health.

You are:

1. A warrior, fighting for your life.
2. A survivor, with a story to share.
3. A beacon of hope, inspiring others.

Keep moving forward, one day at a time. Allow yourself to feel emotions, but don't let fear define you. You are capable of overcoming this.

In addition:

1. Continue journaling to process emotions.
2. Foster open communication with loved ones.
3. Celebrate small victories.
5. Seek support groups or online communities like this Mayo Forum. Stay positive.

Keep shining... you've got this!

Jump to this post

This was an inspiring post. I gained a bunch from it.

REPLY
@kellytzoumis

This level of women supporting each other is amazing. Empathy. I often feel isolated because no one talks about Lichen Sclerous or vulva cancer. It is rare but also has limited to no research and as a result limited options for effective treatment.

Jump to this post

Understand, I wasn't aware of it until I saw it mentioned in the group.

So I've decided to do everything the doctor recommends plus I sought a second opinion because it's what they have. I asked to be in a maintenance trial. The Dr will select it for me but the most important the think I'm doing is living a different lifestyle. I doing all the activities I use to do, but the research on exercise to prevent recurrence in beast and colorectal cancers can reduce the probability of recurrence by as much as 58%.

I also changed what I eat. I'm following a metabolic syndrome diet. I am working with a holistic Dr who is also an MD. With his guidance in correcting issues with my gut, I also have Crohn's. Now we're working on metabolic health. After I complete treatment we will deal with hormones (thyroid) and allergies and sensitivities.

I'm early in this journey. I'm doing all things that have evidence to show some positive impact.

This things people with all cancer can talk about

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In reply to @denisestlouie "Thank you" + (show)
@denisestlouie

Thank the for those kind words. I feel that writing helps me change the story from fear and defeat to experimentation, fascination, and a challenge that allows me to make this joyful also.

I'm glad for the response I'm receiving from the post, responses like your

Denise

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@kellytzoumis

This level of women supporting each other is amazing. Empathy. I often feel isolated because no one talks about Lichen Sclerous or vulva cancer. It is rare but also has limited to no research and as a result limited options for effective treatment.

Jump to this post

Hi: Is Lichen Sclerous same as Paget Disease of the Vulva? Pardon my ignorance.

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I don’t think so.

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In reply to @kellytzoumis "I don’t think so." + (show)
@kellytzoumis

I don’t think so.

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Tx! I asked the question because about 1 yr or 1.5 years before my first diagnosis 3 years ago, i did have one lesion on one side of my vulva and i completed ignored it unfortunately. At the time, we all had trouble finding toilet paper due to the immense demand of it during cancer so i had purchased many different kinds: some very soft, some not soft at all, some recycled etc.. so i blamed the lesion which had bled once to the toilet paper. It was also when my brother was dying of covid in the first months of covid in Europe so my mind was just not focused on me, for once 🙂

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@colleenyoung

It's rather a rhetorical question, isn't it. Managing fear and nurturing hope is a constant calibration. I'm glad you found to the forum where you can be open and frank about both and everything in between. 🙂

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I was diagnosed with vulvar cancer in may 2023. Went thru radiation & chemo.
My last 2 pet MRIs were good but still live in fear.
I have lots of good & bad days. The song “the climb” helps deal with things for me. Maybe it could help others!🙏

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