Ask Amelia: live event Q&A
During our official website launch on October 17th, we featured a Q&A session with participants. While several questions were answered during our live event, some were received after the broadcast, and are now included here with the intention to be helpful. We also welcome you to send us your comments and questions through our contact us page.
What advice would you give a caregiver who visits this site? Where should they start?
Our blogs are a great place to get started and become familiar with the overall process of the journey. We’ve also arranged the blog in a sequential order such that it is easy to navigate and become familiar with what to expect along the way.
What is one thing you would do differently when you began your journey?
I would approach my work schedule and my time differently. I would ensure I was taking time to rest and recover as much as possible instead of working as if I was not going through chemotherapy and also trying to cope with the mental toll and side-effects of the diagnosis itself. This is a topic that is not as readily discussed, but has significant implications if not addressed early on in the journey.
What have you found most helpful on the days immediately following treatment?
Resting and drinking plenty of fluids. Even though it can be very challenging to drink fluids the days following due to the tendency to experience nausea and sometimes vomiting, it is critical to stay hydrated and thus prevent having to go to the emergency room. Even small sips of hydrating liquids such as Pedialyte, water, ginger-ale, and other clear liquids can help replace the fluids you will lose on the days following treatment.
How do you stay positive on days when it’s hard?
This is not easy. I am a believer in the power of gratitude, and I have had a daily gratitude journal practice for a few years. It is most challenging in hard times to do this, but it is doing so that gets us to the better times and ultimately to the best times! Even on days when I am feeling unwell and battered by the side effects, I look for two or three things that are going well, because there is always something going better than not and I write those down. For me, it was and is even acknowledging a day when I wasn’t sick to my stomach...or if I was, acknowledging that I wasn’t sick to something else. These seemingly minuscule acts have and continue to get me through the tough days.
What do you say to people who don’t know what to say to you?
I have found that most people are well intended and want to help and struggle with what and how to say something to “the patient”. To the person reading this who is not “the patient”, I would say that the best thing you can do is to speak with “the patient” as if they weren’t one. It is NOT to say you should not acknowledge their illness or what they are going through, it is to say you should (with simple and genuine questions like “how are you feeling today?”, “how are your treatments going?”, “what can I do to be helpful to you?”), and then try to move towards other topics that are interesting and can help that person talk about something other than their illness. “Patients” still want to talk about the weather, the latest books, movies or programs that are out and are good, as well as activities they’ve always enjoyed and are still doing. The things that drew you together in the past are still relevant in their present. And so rather than feeling like you have to only talk with them as “the patient”, try talking with them as you did before...as a loved one, a dear friend or neighbor or colleague...and let them also ask you about you and things that are going on with you. And while it can feel awkward to talk about mundane things, I have found the mundane things can be quite filling and positively distracting in a healthy way. Otherwise, what ends up invariably happening is that “well-intended” people end up talking about or saying things to “the patient” that are just not helpful. Our very own Consuellama™ has dedicated this blog post to finding humor in this very topic and we hope you will too, so be sure to check it out!
With love,
Amelia O.
