Wonderful insight about the HIPPA regulations! Thank you for sharing, Scott.
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At work, I spend a good portion of my day on the computer. The last thing I want to do when I get home at night is sign on again. However, when I was one of the primary caregivers for a family member, technology became not only a time saver, but also an emotional support tool.
When my father-in-law was going through treatment for AML, he ended up being hospitalized about 100 miles away from his home community. Many of his long-time friends and distant family members were not able to travel to see him but were understandably concerned about his health status. This prompted tons of emails and phone calls asking for updates as well as wanting to express loving concern. After trying to keep up with these overwhelming communication requests, I finally set up a Caring Bridge site and sent the link out to a mass distribution list of family and friends. When returning home at the end of each day, I would take about 15 minutes and write a Caring Bridge entry that would include any new updates with the treatment plan, the highlights of the day and thoughts that my father-in-law wanted to share with all those who were offering support. The next morning, we would print off the new comments that had been posted, bring them up to the hospital room and read him the words of encouragement people had shared. It was a beautiful ritual…having an evening quiet time to reflect and share the important moments of the day, and the morning reading of well wishes and admiration for the way his life had made an impact on theirs. It felt healing and sacred for us as a family, and cathartic for me as the journal writer.
I have heard other ways that people have utilized technology when they are in a caregiver role. One person told me they used it to Skype or Facetime with distance relatives. Another caregiver said they would be lost without their health tracker tool for appointments, medication reminders, insurance, etc.
There have been times when I have complained about the seemingly constant need to be engaged with technology but I will also admit sometimes using technology means caregiver support is as close as our fingertips. Members of Mayo Clinic Connect find it helpful to connect with others caring for family members in the Caregivers group.
Are you using technology to help with all the demands of caregiving? What has been most helpful for you?
Fri, Sep 6 2:50pm · Cancer Information: Too much, too little or just the right amount? in Cancer Education Center
Everyone has their own unique way of dealing with the stress of a serious diagnosis. We often talk about the “fight or flight” response as our body’s way of responding to a situation that feels threatening to us. Most of our current threats do not require us to physically fight an aggressor, but we will find other ways to either take on the problem or try to run away from it. Sometimes we may not even recognize what we are doing is related to the stress we are experiencing. That may be the case with the amount of information we seek related to a cancer diagnosis and the treatment options.
My husband and I had very different responses to a new diagnosis of AML in our family. I immediately starting scouring the literature to find out everything we could possibly learn in order to get the best possible outcome…my fight response. My husband, on the other hand, read absolutely nothing and relied on the healthcare team to provide him with the necessary information…his flight response.
In our situation, it seems like the right road was probably somewhere between each of our individual behaviors. It’s true, I learned a lot about the most current treatment options and prognosis, but as my husband pointed out, my anxiety about the situation frequently went up after reading additional information on the internet. The information I learned did, however, help us prioritize how we wanted to spend our time and energy during an aggressive treatment regime for an equally aggressive cancer. My husband wanted to “get his mind off it” and felt the healthcare team were the experts and would provide us with information we needed as we needed it. We both were trying to manage our anxiety over the diagnosis in our own way, which was completely opposite of each other!
In hindsight, my husband would say he appreciated knowing the statistics for his father’s prognosis because it helped him ask some of the difficult questions that are frequently hard to raise. Similarly, I would agree that some of the information I found was very valuable for us. But, many of the articles I read were very dismal and increased our anxiety. It became more challenging to see what was going right in the moment rather than what could possibly go wrong in the future. So for the two of us, it may have been more helpful to just formulate the questions that were most significant for us and ask the oncology care team or have them point us in the direction of helpful research articles. Everyone is different and the best way to lessen our stress or anxiety is also different, even within families. It’s important to know what works best for you. How much information is helpful to you when learning about a serious diagnosis and how do you like to get that information? Have you had experiences that worked well or worked poorly?
While you were growing up, how many of you were taught that discussions about sex were inappropriate for casual conversation? For some of us, the topic was not only absent from social conversation, but also in our families. Obviously, this has nothing to do with the importance of sex and intimacy in our lives but more to do with our cultural background and a discomfort related to openly talking about highly personal issues. Unfortunately, that same discomfort may interfere with getting helpful information regarding changes in sexuality that frequently occur with various cancer treatments.
Several cancers or their treatments have the potential to impact sexual function and response. Any of the following cancer-related situations may lead to changes in our sexual response:
As healthcare providers, we know sexual concerns may be difficult to discuss. But frequently there are suggestions that can help. In the past, some people have told me that with a new cancer diagnosis, so much information was given that thoughts of sex didn’t even surface in their minds. Others said it was one of the first things they thought about but were too embarrassed to ask questions. Others said that during treatment, they were either so sick or tired that it wasn’t a concern. Once they were feeling stronger, however, sexual problems were a significant concern for them and their partner. Yet even then, they were hesitant to mention it to their healthcare provider.
Our need for intimacy and closeness doesn’t stop with a cancer diagnosis. Getting the information and support you need to live life to its fullest is important. Everyone’s situation is different regarding when and how you like to receive information. Some may want to have open conversations that are initiated by either person in a relationship or with their healthcare provider when a troubling situation occurs. Others are more private and prefer brochures or visiting a reputable website that provides reliable information.
I’d love to hear your thoughts about what would work best for you if you wanted information about your sexual concerns. If you prefer conversations with a healthcare provider on the subject of sex and intimacy, when is the best time for this to happen? Is it when making decisions regarding treatment options, during treatment or perhaps at follow-up appointments? Thank you for providing input on this important topic.
For many people when they first hear a diagnosis of cancer for themselves or a loved one, work accommodations are not among the first thoughts that enter their mind. Usually our mind will race through a variety of concerns such as:
Once the reality of treatment starts, however, some of those work-related questions may start surfacing:
Thankfully, the American Disability Act provides significant support for employees with a serious diagnosis. Employers are required by law to provide reasonable work accommodations for any employee with a disability and, yes, impairments caused by cancer or its treatment would be included in that category.
For example, accommodations could include changing the number of hours worked or adapting your weekly schedule. Or another example may be making adjustments to the work space such as furniture changes, parking locations or office technology to make it more comfortable or possible to continue working during and after treatment.
There are a variety of reasons someone may continue working during their cancer treatment. Perhaps work brings a sense of normalcy to life during a time that feels very unsettled. Or work colleagues may provide a wonderful emotional support system to help deal with the challenges of treatment. Maybe it is a financially-based decision. All of these reasons, and others, are valid.
Talking with your healthcare provider is a good way to get a realistic idea of what challenges treatment may bring to your day-to-day activities. If you want specific information related to cancer and employment, http://www.cancerandcareers.org/ and also http://www.cancer.org/ provide a wealth of information. Perhaps you have already navigated the world of work and treatment. Were there conversations or factors that helped you decide how best to handle that situation? What worked for you? Please share your wisdom with the group.
It is prom season and unfortunately, that may lead to an increase in tanning bed use. The quest for a bronzed look may continue to drive this activity but it can also put our skin and health in jeopardy. The Journal of the National Cancer Institute published a study that discussed the relationship between tanning bed usage and an increase in the number of melanomas. Not only did more melanomas develop, but they were occurring in a younger population. Many of us may have been told in our younger years that indoor tanning was safe but the article relates that there may be a specific gene mutation, BRAF V600E that happens more frequently in tanning bed users. Most of the identified melanomas in the study had this mutation, especially if indoor tanning occurred before the age of 25. Hopefully, education and changing public opinion can swing the pendulum on this activity and at some point in the future indoor tanning will no longer be as common. Although we can’t change the past, it is never too late to begin good healthy skin prevention practices like avoiding tanning beds and also diligently using sunscreen while outdoors.
On May 18th, Mayo Clinic is hosting the Melanoma Education Symposium 2019, Sun Safety and Survivorship. Topics will include melanoma risk management, surgical management and other treatment options as well as information on clinical trials, stress management, survivorship and cancer resources. You can register online https://ce.mayo.edu/hematology-and-oncology/content/melanoma-education-symposium-2019
Please join us to hear and discuss the latest information on melanoma. We look forward to seeing you there!
Courage is an unusual thing. We may find ourselves being able to call it forward more easily to help support those we love than if we were in a similar situation ourselves. During the time of a cancer diagnosis and treatment there may be numerous situations that cause uncertainty and potential pain. As a nurse, I have humbly watched both patients and their loved ones be strong for each other during those times when they needed it most. Changing dressings, suctioning secretions, helping with tube feedings may be a typical situation for healthcare providers, but terrifying for a family member. Yet, these same family members cautiously learn the skills necessary to help their loved one during their cancer experience.
In the same way, I have seen patients be incredibly courageous in what they endure, sometimes more for the sake of their loved ones than for themselves. My father-in-law struggled with a very aggressive form of leukemia. When our family reflects back on the time prior to his death, we now believe some of his choices were made to make an incredibly challenging experience easier on those he loved.
However, courage and strength are not qualities that measure the affection or love we have for those around us. We all have times when we need to either be the source of strength or find a source of strength. I’d love to hear where you personally tap in to strength during those situations: other family members, healthcare professionals, support groups, faith communities, nature and others are all possibilities. Please share with us in the comments.