by Megan Giblin
Where to begin?
The “communications” topic is multi-faceted. Today, I want to focus on the beginning of my “communications journey” tied to our experience of my husband’s NSCLC (non-small cell lung cancer).
Note: At the time my husband was diagnosed with NSCLC we both worked at the same company, in the same group, in the same office, and in cubicles behind one another.
Late in the day on an October afternoon in 2008, my husband received a phone call from his pulmonologist who did the lung biopsy (bronchoscopy). Looking back on it, that doctor could have used a bedside manner or a communications course in how to share bad news with patients. Without any preparation, the doctor, who was heading out on vacation and in the process of wrapping up loose ends, called my husband at the office, where we all sat in cubicles, to tell him his bronchoscopy results. While my husband was sitting at his desk the pulmonologist told him it was lung cancer. My husband continues to say that the doctor “ripped the Band-Aid off” without warning. As a colleague and more importantly as a significant other, it was hard for me to miss that whatever his pulmonologist was telling my now husband was not good news. Once my husband shared the devastating news with me, our lives changed forever. NSCLC was a part of our life and part of our relationship. We were blindsided by the diagnosis and overwhelmed by questions of what to do, who to tell, what to say, etc.
Who to tell?
Like every other issue related to a cancer diagnosis, the issue of who to tell is a personal one. Everyone needs to determine who they need to or want to inform of the diagnosis and updates. No one will have the same list of people to include. For us, we needed to tell immediate family (parents, siblings, etc.), a sub-set of our close friends, as well as a limited list of close colleagues (because of the closeness of our office there was overlap between close colleagues and close friends).
Who takes the lead on communicating updates and other relevant information?
They say that opposites attract. This is true for me and my husband. I am more of an extrovert: I am more social and outgoing than he is. He is more of an introvert: he is shy, quiet and reserved (at least until you get to know him!). As a result, from the beginning, the communications with our network – close friends and family – have fallen to me. Taking the lead on communicating updates makes me feel like I am taking something off my husband’s shoulders. I am grateful for this and happy to take on this responsibility. Generally speaking, it is helpful for the survivor and co-survivor (spouse/significant other) to agree on who is going to take the lead on communications, noting that there could be one or multiple shifts throughout the journey.
What to communicate?
What to communicate is a bit of a moving target. Again, this is a personal choice – not everyone is the same and not everyone wants to share any or all information on their diagnosis or updates. From day one, I have looked to my husband for guidance on what to say and how much to communicate. For example, he is very matter of fact about things, but that is not the case for all survivors; other survivors may be very private and may not want anything shared. It is a hard thing to do, but it is important to remember that you are the survivor support – you are a co-survivor in this journey. While my view is that the co-survivor needs to have his or her own network (a topic that will be discussed in a future posting) of people to go to and seek support from, it is important to remember that it is not your cancer, it is not your decision what level of information to share and/or who to include in information communications. Watch how your partner communicates and follow their lead. My experience is that it will make things easier as a couple. This approach has worked for us. We have always tried to be up-front and straightforward in our communications. While we may provide more details to some, our general practice is to share a summarized version of what we know. In terms of how we deal with information intake, generally we “drink from the fire hose”, allow it to absorb, and then reach out with updates and to get support.
When to communicate?
I find it easy to see how life could become all about the cancer. This is not the approach that we have taken. We choose to focus on the positive and keep life as normal as possible (i.e., our life has not been consumed by the cancer). As a result, I tend to keep updates periodic. I flag a treatment or a scan. I follow-up on the outcome of a scan or a procedure and we summarize next steps and overall approach. For us, it is important that our close friends and family (i.e., those in the inner circle of our network) are operating on the same page, so as to avoid misunderstandings (which can and do happen, even with those who are clear and consistent in their communications approach!). Our experience and observations of others going through a long-term or chronic illness shows that keeping a positive outlook and life as normal approach is helpful throughout the journey. It would be extremely helpful for survivor and co-survivor to discuss and agree to the frequency of updates (e.g., do you communicate only after significant events – a scan, a treatment, or a doctor’s appointment – or is there more that you feel needs to be communicated).
How to communicate?
At the beginning and until very recently, I took a direct approach, making phone calls to the parents, siblings, aunts/uncles, and close friends. To be honest, these calls were difficult, depressing, and often full of questions we were not always able to answer. At some point within the six months or eight months, I moved to e-mail based communications triggered by a scan, scan results, etc. The e-mails started about the same time that I learned about a wonderful tool called “CaringBridge”. I WISH I’D HAVE KNOWN ABOUT THIS TOOL FROM THE BEGINNING!!! Today, I maintain updates on a CaringBridge site that I have established for my husband. CaringBridge has made my life easier. I love the fact that you can setup an “invitation only” forum where those we designate can go in and pull down the latest update. In addition to the secure forum there are other types of forums that you can establish (e.g., public and accessible by all). I find CaringBridge easy to use, but for some of the less tech-savvy in our network, I still make phone calls as well as send an e-mail and advise that I am posting the content to my husband’s CaringBridge site. My recommendation, once you get into a routine, is to explore CaringBridge, set-up a site and alleviate some of the stress about providing updates.
About CaringBridge:
CaringBridge provides free, personal and private websites that connect people experiencing a health challenge with family and friends, making the health journey easier through communication and support.
LUNGevity is a proud CaringBridge Partner
LUNGevity aligns with CaringBridge to ensure members of our community are aware of this helpful resource when facing a health challenge. Learn more and create your own website at www.CaringBridge.org/lungevity.
Other resources:
The LUNGevity Caregiver Resource Center
The CRC will arm caregivers with information on what to expect after a lung cancer diagnosis; what questions to ask; how to help the patient; ways to take care of themselves and a listing of resources available to people affected by lung cancer.
