Support Groups

General 2 Minutes

I have found myself encountering different crisis throughout my life and the times that I’ve handled that crisis better (not particularly well, just better) was when I found a group of people in the same or similar phases of life so that we could face that crisis together. Whether it was wanting to be married versus single, infertility when all I could do was hope and wish for a child, my mother’s cancer diagnosis, looking for a job, graduating from school and looking to establish a career, leaving an established firm and starting my own law firm, or the myriad of small issues in between, a support group of people who “got” me was invaluable.

When I was initially diagnosed as Stage II in March of 2017, I was overwhelmed, going to a million different doctor appointments and in and out of the hospital with surgery and chemo, etc., so I never attended a formal support group in person. When we found out in June of 2017 that I’d actually been Stage IV from the beginning, I then wanted to attend, but was told not to come because I might scare the early stage patients. I was honestly pretty angry about that and didn’t pursue support groups in person for a bit after that.

The support groups I’ve found to be the most helpful are the ones online. It’s hard for me with little kiddos to get to support groups in person in the evenings. I’ve backed away from most of the groups that mix early stage breast cancer patients with those of us who are metastatic since the experiences are just so different and our needs are different. The online support groups are helpful because someone is always awake and able to chime in when I have a question or a concern or just need to connect with someone. In one of the support groups I admin, we match women by age and geography through our “Sister Buddy” program so that there are more opportunities to connect.

Now that COVID is affecting everyone in so many ways, each of the in person support groups have moved online. I see a lot of people who are struggling with isolation and all of the things that come with having a terminal illness and dealing with a global pandemic. Connecting to others can be extremely helpful.

At my cancer center, we have a metastatic support group and I worked with the team to create a video to encourage others to attend. Support groups are so key to dealing with so many things and not feeling alone is something that everyone needs. Check out the video I helped with here.

Outside of my cancer center, I’ve been honored to help moderate a Stage IV support group via zoom with my Dad. You can find out about the support group for those of us in the MBC community and the others offered by the 305 Pink Pack here.

Wherever you find a support group, be sure to make it a regular part of your life and routine. You won’t regret it.

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

18 thoughts on “Support Groups”

  1. So true. Before I met people like you, Cancer was even more daunting because I felt so isolated. Having the ear of others who can truly relate is immeasurably helpful. Well said. Thanks

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  3. Local support groups didn’t work well for me. I didn’t feel a strong connection to anyone, I wasn’t completely open about my diagnosis, and there were always someone who hogged the majority of the time. I have been fortunate to connect with one or two locally at events over the years that are now trusted friends. The online support groups offer some anonymity (which I like) and high levels of support. I also feel supported from friends I’ve met through Twitter. You are one such friend. We need each other.

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  6. Abigail – I’m sad that it took Covid to raise up the need for online video support groups for metastatic cancer. It’s hard to get out at times even when we’re not in a pandemic situation. I’ve trained as a patient advocate, trained to host healing circles and attend two online support groups. My palliative oncologist at Stanford asked if I’d lead a support group for women with MBC who have asked for one and I’m humbled he believes I’m up to the task so making my life have more meaning. I plan to use some writing exercises so they can bring the healing circle I will host back to their lives and get their thoughts on paper in some way to focus the discussions on what’s in their hearts. It’s important and they all feel so isolated like I have from Covid and from MBC. Thanks for sharing your thoughts on this important topic.❤️much love. Ilene

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  7. I’ve never been too much of a joiner. My visit to an Al-Anon and Ovarian Cancer support groups didn’t draw me in though I think that’s on me. Both were welcoming and no one hogged the spotlight. I couldn’t see what I would get out of it but maybe I should ask if I had anything to offer like President Kennedy’s inaugural speech. But I never returned or felt a need to do that. The online local support group that a woman invited me to join was mostly women with breast cancer and I eventually left after posting a couple times. It was not specific enough to my cancer or my realities. I guess what I’m saying is that you have to find a fit that feels like a partnership. A friend gave me a name of a woman recently diagnosed with ovarian cancer and positive for the gene for Lynch syndrome. My friend suggested I contact this woman as if the diagnosis made us sisters when it was the only connection we could make. I struggled with that for a couple weeks because it felt invasive to me. To my friend’s credit she asked what I would have wanted in this instance but I couldn’t imagine now what I would have felt then. I guess I’m also afraid to tell my friend that she is kinda’ deciding what’s right for everyone instead of letting it up to them. She mourned a friend who kept her diagnosis secret up until death suggesting that she had missed out on so much support. Maybe she did but probably she lived life as she wanted up to the end. Maybe your blog is a support group for many that can choose to join in or read along silently what you say and others comment getting information and support.

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    1. Thank you for offering this personal perspective. As an introvert, I also struggle with not wanting to connect to more people, especially at the beginning of a new thing like a cancer diagnosis. I’ve gotten so much more support from online support groups and from connecting with others than I ever thought was possible, which is probably part of what your friend was thinking. At the same time, it is also a perfect reminder that everyone is different and there is no one size fits all support group or solution. Finding that fit that makes you feel welcome and supported and like the other people know what you are going through is absolutely key. With the amount of messages and comments that I get, I suspect that there are quite a few people in your shoes and that’s why I’ve been as open as possible on this platform. Thank you for offering your opinion and for reading. :). If there is anything I can do to support you or a topic you’d like to see me write about, I’m all ears. Love and hugs to you.

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  8. This resonates son strongly with me. I am 6 years out from a de novo dx and have zero emotional support locally. I am in a major metropolitan area. My Facebook and Twitter connections are my saving grace. I would love to start a group but am not sure I have the toolbox. It is crazy how alienating support groups can be to MBC.

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