Living life after breast cancer: 6 tips on coping with the fear of recurrence

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No one told me that life after cancer was the hard part. The abrupt change from being blanketed in active treatment and constant monitoring by my doctors, to suddenly being forced to take the wheel and navigate this new unknown world on my own. I thought I should’ve been celebrating the end of treatment, but instead I was met with the collateral damage that cancer left behind. The pain, the uncertainty, and the fear of recurrence.

As life resumed back to normal for those around me, I found myself falling into a tailspin of emotions. I felt guilty for not being able to pull myself together through this state of constant wonder and worry. I had made it through surgery, chemo and radiation, but yet this was where I began to struggle the most. I realized though that the emotional scars take a lot longer to heal than the physical ones. Every scan, every bloodwork, every ache leaves me holding my breath wondering whether the cancer has come back.

I miss the days of not having to worry about every little ache or pain in my body. Chalking it up to something innocent and being blissfully naïve and ignorant. But now something as simple as a common cold or headache feels much more sinister. The thought of a recurrence or metastasis nestling itself closer and closer in my mind. I try hard not to run to the internet and fall into that deep dark rabbit hole researching every symptom and worst-case scenario but some days the panic and fear get the best of me.

This whole life after cancer thing messes with my head sometimes and it’s hard to find that balance between wait and worry. And although these moments of darkness come less frequently nowadays, when they do, they hit hard. It’s a constant learning process coping with the fear of recurrence and regaining trust in your body again so I’m sharing 6 tips that have helped me along the way:

6 tips on coping with the fear of recurrence:

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Don’t consult Dr. Google

A symptom of a common cold comes up and suddenly you find yourself on the internet typing in an innocent search query which has now turned into self diagnosing with a rare and incurable disease. Sound familiar? I am guilty of this in the past. Turning to Google for a quick diagnosis fix but more often times than not leaving with even more heightened anxiety then before. The information on the Internet can be so misleading which is why it’s important to be mindful of which websites you check. I often keep my Internet queries to researching things like drugs, treatments, surgeries, and side effects and use reputable sites like http://www.cbcf.org or https://www.cancer.org/ to ensure that the information I’m getting is accurate and up to date.

Keep track of signs and symptoms

Anytime an ache or pain comes on, it’s hard not to automatically assume the worst. Between the hormone therapy medication and residual effects of chemotherapy treatments, I’ve been left with a myriad of side effects including bone pain and heart arrhythmias that make it difficult to know what to be worried about and what not to be. But what signs and symptoms should I be worried about? When I asked my oncologist, he told me the general rule of thumb is with any new pain or symptom to wait two weeks. If it hasn’t resolved itself or is getting progressively worse, then schedule an appointment to get it checked into further (scans, bloodwork, etc.). On the other hand, though, if something doesn’t feel right, tell your doctor and don’t let them diminish your concerns. It is critical to listen to your body and speak up for your health. Keeping a health journal can also be really helpful to track of the length and severity of any new symptoms or pains so that they can properly addressed at your next doctor’s appointment.

Practice self-care

Self-care is both a practice and a necessity in my life. At times it’s hard to slow down in a fast-paced world where it’s all about getting as much crammed into one day as possible but I’m learning to allow myself that time to look after me and my own needs without feeling guilty about it. Self-care can include anything from treating yourself to a long bath, reading a book, journaling, taking a quick nap, yoga, meditation, or getting outside for a walk. The options are endless and it’s really about working on ourselves so that we can give the world the best of us and not just the rest of us.

Check out:

Headspace meditation app – https://www.headspace.com/

30 Days of Yoga with Adriene – http://yogawithadriene.com/30days/

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“She is Fierce” tank from the Young Survival Coalition

Talk to someone

It can be hard asking for help but sometimes all we need is for someone to just be there and listen and let us talk ourselves through the process. Whether it’s seeing a counsellor, talking to friends or family, or to those who really get it, just the telling can make things seem less scary. There are a lot of emotional and mental scars left behind post treatment and once I started connecting with other women through social media and events like the YSC Summit who got it and understood exactly what I was going through, I no longer felt alone. Everything I was feeling was completely normal and not anything to be ashamed of.

Allow yourself to have that moment

The best thing you can do when the fear of recurrence begins to rear its ugly head is to acknowledge it rather than ignore it. I found out the hard way last year that trying to push down the thoughts rather than addressing them head only made the fear push back harder. I learned to accept that there was going to be some level of fear and anxiety and find ways to cope with it. Worrying about it wasn’t going to help or change anything. Sometimes I allow myself a few minutes for a pity party then move on and other times I just need to have a good cry and let it all out. It’s important for us to be more accepting and forgiving of ourselves as we move through our experiences.

Focus on what you CAN control

Instead of worrying about the things that I have no control over, I try to focus my time and energy on the things I CAN control like taking charge of my health, my diet and exercise, and the people I surround myself with. I make regular appointments for massage therapy, cut down on my alcohol, meat and dairy consumption, and make an effort to get out and exercise at least 4-5 times a week. But on the other hand, it’s important for me not to obsess over it either. When I was first diagnosed, I was so scared to put anything “harmful” in my body that I could barely take a sip of wine without thinking it was going to bring the cancer back. I’ve learned though that stressing about it is far worse on my body than just having that glass of wine and allowing myself an indulgence here and there.

The fear of recurrence is a long-lasting scar that’s left behind after treatment and I still find myself learning how to work through it. There are some days where I manage to tuck those thoughts away and others where they find their way bubbling back to the surface. That struggle is just part of life after cancer and I think it will always be an ongoing process. But I found the strength within myself to fight cancer. And I will find the strength to live after it.

What tips do you have for living with the fear of recurrence?

xo Kim

8 thoughts on “Living life after breast cancer: 6 tips on coping with the fear of recurrence

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  1. Hi Kim, thank you for sharing. I too have cancer (lung) and while I still have operations to face and plenty of uncertainty about my current state, it is good to read how others are coping and helps me too.

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    1. I’m so glad to hear you found this info helpful:) It’s nice knowing we are not alone in this and being able to share our own thoughts and experiences with each other is so valuable. Take care, Kim

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  2. This is beautifully written Kim! I agree with all your tips, especially avoiding Dr Google, and self care! Thank you for sharing your thoughts…. The fear of reoccurrence is so strong, so real, so true…I can absolutely relate . Wishing you the best always. Love, Suz

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    1. Thanks Suzanne for all your love and support always! I wish there was a guidebook for navigating life after cancer but it’s nice knowing that we can all relate to each other and our shared thoughts and feelings going through this.

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  3. Wow,
    Thank you so much for this, I too am struggling with the fear of recurrence, I feel like you took the words right out of my mouth! It’s nice to know what I am thinking and feeling is the same as someone else who has fought this beast! I love your blog, it’s so honest and you’re so inspiring!
    Thank you!

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    1. Thank you so much for your kind words and am so glad this was able to speak to you.The fear of recurrence feels like a new disease in itself at times but know you are definitely not alone in this fight. xo Kim

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  4. Hello 🙂

    Firstly…. I have found so much comfort in following your posts 🙂

    I found the most spot on article written by a chemo nurse who was diagnosed and went through the journey herself. Have you come accross it? If not I will email it to you. One of the most resonating things she says is that its unrealistic and almost cruel to tell people not to google…. what she does now instead is teach them what sources to seek out etc.

    I had my post chemo follow up in Victoria last week and felt so belittled when I said ‘ I read….’ and the oncologist said ‘ well dont’….. I am a nurse and thats what we do to educate ourselves! The appointment went down hill feom there but thata another story! Lol

    Your absolutely right about after treatment being hard…. I feel so lost and broken right now…

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    1. Hi Kirsten! Thank you so much and I’m so glad to hear you’re finding some comfort in my posts. I don’t think I’ve come across that article but would love to read it. I do agree that having the information in your hands is so powerful but I think the key is getting that information from credible resources. I’ve gone into appointments as well with information in hand that I’ve read from peer reviewed articles as I want to understand the science behind it and the options available to me. My oncologists have been very receptive so far but it’s unfortunate that some may not have that same experience. You are your biggest advocate though and don’t let that discourage you!

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