“I’m not really sure why I am calling.” “My friend told me to call you.” “I have no idea what to do.” These are some common opening lines from phone calls with my patients. As the Patient Services Manager for The Leukemia & Lymphoma Society, I received distressed calls from patients, family members, and concerned friends – all searching for answers or simply ways to make things better. During a whirlwind time, being able to focus, to give people tangible resources, to know that there are ways to calm the storm, did help but, there was no way to offer the thing they wanted most – a step-by-step plan for assured cure. They want to know the best doctors, the best treatments, the best hospitals, the best of the best of the “right” things to do. Sadly, “the best of” doesn’t always equate to assured cure. Still, one hopes that speaking with an informed, caring person who can offer knowledgeable insights does provide a port in the storm.
But, how do people find that person? A dear friend and volunteer with LLS once said to me – “I had no idea what Patients Services WERE let alone that I should be asking for them!” This was disturbing to me for sure but – it is the reality for many. Unless someone on your treatment team or a fellow patient encourages you to reach out – many patients / family members don’t even realize there are resources out there to assist them. It is a huge gap in the way we communicate about “treatment”. “Treatment” often includes a laundry list of medications and procedures for the patient but – it doesn’t include a list of resources to care for the whole person – to make the experience easier – or to even know that it CAN be easier, to offer support, to connect to others who have walked similar paths, to educate, to inspire, to help heal. I’d like to think that was my role – to sleuth out the resources and match them to the person’s needs. Or –sometimes more aptly – to help identify what they may need and then assure them there are ways to fulfill those needs.
This all sounds wonderful, right? Here’s the rub, when patients or even some family members are in the throes of a diagnosis – their brains may not be able to process information in the same manner as when they are un-stressed. Although they seem to take it in and are certainly grateful for the help, it often evaporates when they dig back into life with cancer. Many times people recount their experiences and relay things like “ no one was there for me”, “ I wish I knew about this before.”, “why didn’t anyone tell me?” Truth be told – people might have tried to assist but – again – through no fault of their own – they just couldn’t process one more thing! So, what to do? I think the best thing is to provide reminders– to set up weekly emails to remind them help is out there. Now there are apps that do just that – how fabulous!! There are also sites to help coordinate care – rally your family and friends and share with them what you need – without having to actually ask for it in person (Caring Bridge, Care Pages, GiveForward, Take Them a Meal…). People truly do want to help – they just don’t always know what to do. By stating your needs clearly – once you identify them – you will be amazed how often people are willing to give you exactly what you ask for – in a good way.
The world is changing and although cancer may still be a part of it, there are so many things to ease the process. You and your loved ones deserve wrap around care. Although I wish there was a one-stop shop, you might have to reach out to a few places to get all the support you need.
To start, I recommend reaching out to the support organization that aligns with the diagnosis (The Leukemia & Lymphoma Society, Lymphoma Research Foundation, PanCan, Bright Pink, SHARE etc…), or the type of support you need (Stupid Cancer, Cancer & Careers, Gilda’s Club, CancerCare etc…). These organizations provide excellent information about the disease and treatment options as well as support and resources that extend beyond the focus of the disease.
Although I loved my work at LLS, I am now with an amazing organization, Cook for Your LIFE. Our mission is to improve the health of people touched by cancer by giving them the practical knowledge, tools and inspiration to cook their way through treatment and into a healthy survivorship. We are devoted to educating people about preparing nutritious, simple and delicious food. We also realize that the crushing fatigue and demands of managing an illness can impede the desire or strength to cook – that’s where Meals To Heal comes in! Our organizations work together to make sure that you get healthy food – delivered to you when you need it – or, when you are ready – have the know-how to put it on the table yourself.