Finding Great Support After a Cancer Diagnosis

Finding Great Support After a Cancer DiagnosisI wrote recently about some of the practical lessons that I found myself having to learn rather quickly in dealing with two separate diagnoses of early stage breast cancer. One of those practical life lessons was what a difference it can make when you’re not afraid to reach out for the help and support that you need.

Maybe it’s our culture, maybe it’s an innate tendency for some of us, or maybe it’s a bit of both, but I think we’re often more inclined to try to “work things out” on our own instead of asking for help. I know this is my natural inclination. But sometimes this can be a much harder way to go.

Along with this, and perhaps reinforcing this perspective, is a tendency to think that we’re alone in what we’re experiencing even though the reality is often quite the opposite. I remember the strange, scary feeling after I was diagnosed that I was somehow “different” now and that this would never change. You feel helpless–most likely not  a beneficial frame of mind to be in when it’s time to focus on healing and health! Reaching out for support in an informed and assertive way can be one way to start to regain that lost feeling of control.

I did reach out for support early on. I didn’t actually think of it that way though. I was getting ready for my mastectomy surgery and was researching options for reconstruction. It was then that I found out about a local breast cancer hotline and that through the hotline I could have the chance to speak with others who had had the types of reconstruction that I was considering.

Well, not only did I get some helpful practical information in these conversations, but the extra benefit was the sense of relief I felt in being able to talk with others who had already gone through what I was dealing with. Just talking to them made me realize I wasn’t alone and I could get through it.

Researchers studying quality of life issues for breast cancer survivors have found that the one area that has probably changed the most over the past thirty years is that there are now many more sources of support available, largely through formal and informal support groups and online and others sources of information.

Here are some of the options and a little about my own experiences with several sources of support that were helpful to me while I was dealing with breast cancer treatment and afterwards.

Hotlines

The hotline that was one of my early resources for information and support, as is generally the case with the best ones now, was staffed by trained volunteers who were themselves breast cancer survivors. I had found out about the particular hotline through my oncologist’s office. (Your oncology office or cancer center, by the way, is a good place to go for referrals to hotlines, support groups and other resources.)

Good hotlines provide information about the disease and resources for further information. Hotline volunteers can help callers sort through feelings and concerns and can assist them in working out practical steps they can take to get their concerns addressed. For example, they can help a caller put together a list of follow-up questions for her next oncology appointment.

There are breast cancer hotlines that provide support to callers with both early stage and metastatic breast cancer, as well as their caregivers. Well-trained volunteers are prepared to share information about their own experiences but never offer medical advice.

Support Groups

Support groups can be wonderful but they are quite diverse. It may be necessary to check out more than one group before you find one that’s a good fit for you. Support groups may or may not work for you, but I think it’s important to keep in mind what you’re looking for in participating in a support group and to move on if your needs aren’t being met.

I attended a couple of support group meetings, but there didn’t seem to be enough similarity between my situation and those of the women in those particular groups for the discussions to be helpful for me. There was one exception though. I had been told about an upcoming informational meeting of a support group at a cancer center near me. The topic of the discussion was how to go about obtaining your medical records. I decided to go, learned a lot at that meeting and was very glad I went. So the moral for me was to keep an open mind and grab opportunities that presented themselves.

One-on-One Counseling

Another great option to consider is a meeting or series of meetings one-on-one with a counselor such as a social worker who is experienced in working with breast cancer survivors. As I was progressing through treatment, I found myself beginning to think about what would happen next after active treatment is completed. I found that I had a variety of questions and concerns including how to handle the fear of recurrence.

It seemed to me that it might be very helpful to talk with a knowledgeable person who could help me work through these concerns. That turned out to indeed be case for me, and the counselor I met with helped me to work out some personal action steps that helped me feel much better prepared as I moved on after treatment.

Online Support

There are some great resources for support online. This is a growing area and can be a good way to find support that is more directly relevant to your specific situation than you might otherwise be able to find. I think the key is to confirm that the resource is reliable and provides sound, evidence-based information and support.  An excellent article on this topic is “The Stories We Tell: Women, Cancer, and Social Media” in A Woman’s Health.

Final Thoughts

For me, it was extremely valuable to realize that there were many ways I could be proactive in dealing with my illness. This was not about putting a cheery face on a bad situation. Rather, it was about realizing that I had choices and many action steps I could take. And that I was not nearly as helpless as I felt at first.  It’s certainly normal to feel overwhelmed when faced with a cancer diagnosis. In fact, it’s hard to imagine not feeling that way at first. But the good news is we don’t have stay in that place.

Related Posts
Cancer and Life Lessons
Breast Cancer Quality of Life Issues: A Researcher Asks “Are We Doing Better?”

Photo credit: hxdbzxy via Shutterstock

 

 

 

 

 

10 responses

  1. This is an interesting grouping of ideas that I’d like to think most would be willing to at least try but, I still find myself wanting to do it all on my own. Just can’t bring myself to reach out to others, feels like I’m a burden to others or I’m too introverted and socializing/reaching out in this way makes me extremely uncomfortable. ~D

    • I hear you, Diane. It wasn’t that easy for me to reach out either. For some reason though, I feel a little more comfortable when I think of these kinds of activities more as “information gathering” than asking for help or as social-type activities.

  2. Diagnosed with early-stage breast cancer in 2008, I immediately joined a local support group. Though, I moved 2000 miles away four years ago, I remain active and continue to communicate via e-mails, Facebook, Face Time, Skype, texting, snail mail, and the landline telephone.

    • Six years – that is awesome. I’m so glad you were able to find a group you connected with right away and that obviously continues to provide a wonderful support network for you. Thanks for sharing your experience!

  3. Lisa, great piece about all the options. I found a real life support group worked for me for a year or so, but I outgrew it, or rather the group changed and I found my situation was far different from what the majority faced. So, online became a better resource for me, your blog included! I especially appreciate the advice to keep an open mind for any opportunity that presents itself. I always look for that!

    • Thanks so much, CC. I can certainly relate to your experience with a support group where your situation was very different from the others – it just doesn’t help you very much. As you point out, groups do sometimes change, and what works for a while may not anymore at some point. There are excellent resources online now, both for information and support. It will be very interesting to see how online resources continue to grow and evolve over time.

  4. Lisa, this is an excellent, comprehensive post on the available support systems available to those with cancer. I find the online resources, which weren’t available when I was diagnosed, wonderful. During such a time of crisis, it is important to reach out and get help.

    • Hi, Beth. Thanks very much. Yes, the resources available online now are amazing. This adds a whole additional area of support that wasn’t available when I was diagnosed either. I think it’s great to have a menu of options to pick and choose from.

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