Care Partner Resources Archives

 

Mucosal Melanoma – Voice of a Caregiver

We respect the privacy of each shared personal stories.

For this  piece, we have removed the individuals name and have identified her as Lilly. 

Meet Lilly:

“Anyone who has cancer is the incredible person,” says Lilly.

Lilly is a full-time mom, who often spends more than a dozen hours in a week supporting her mother who was diagnosed with mucosal melanoma in May of 2015. “I never heard of Mucosal Melanoma until May 15 and want others to know that name.”

Mucosal Melanoma

According to the Melanoma Research Foundation, Mucosal Melanoma is a rare form of melanoma, making up only 1% of reported melanoma cases.  The location of the disease can affect any mucosal surface of the body.

EricaBlogPost“This is not the cancer that will run away – I want people to know the name.” Throughout Lilly’s adult life, she too has battled a series of health issues and recognizes the importance of developing a coping mechanism to support herself and her family. “Life is about fighting, about survival, not taking anything for granted. If you have gone through something traumatic… you fight.”

When Lilly first started learning about Mucosal Melanoma, she was devastated to learn about the disease’s trajectory, but she now says “you remind yourself about all the good instead of bad.” When she started digging, she found hope: “I started finding survivors, blogs, and the good things, the drugs showing improvements.”

The strength to prevail as a caregiver emerges through the love of Lilly’s mother. “This isn’t me.. I am not the one with cancer.”

Lilly discusses the importance of a caregiver’s cancer education. She says you do not want to hear “you just have to fight.” You must “make sure you are educating yourself on the disease itself to be a good caregiver.”

Lilly’s two children – a  7-year-old son and 9-year-old daughter – also share their compassion and desire to make a difference for Mucosal Melanoma. Both children help raise money and awareness by selling stickers and creating lemonade stands in their local community. The money raised by Lilly’s children has been used to buy cookies and sweets for families and friends in the patient waiting room.

In a very personal moment, Lilly shares her sister’s conversation with their mother: “What are you looking at?” Her mother responded “I wonder if I will ever see snow on that tree again.”

 Clinical Trials

Her mother’s words remind Lilly of the importance of research and opening yourself up to all opportunities. “When you deal with such a rare type of cancer, you have a 50-50 shot, and doing clinical trials, it will either work or it won’t.” She says, “If you have a chance at a shot in the dark, you have got to take it. especially with the prognosis.”  Clinical trials are the pathway to uncovering our connection to a cure.

We are in This Together

Lilly shares two important messages for all caregivers:

  • “Make sure you are being your own advocate and find support for yourself.
  • “Do not educate yourself so much that you are afraid to live.”

We are in this together. It is important to remember we all have a voice – we all have a story. Lilly could not have said it better:

Visual Graphic

“I want the world to fight with me. I don’t want to be alone. If we talk about it, we can fight together.”

8 Beliefs That Can Hold Caregivers Back (from reaching out for help)

Family caregivers too often suffer from two very common things: overwhelm and isolation. Or, to it put another way, exhaustion and loneliness. So often, the nature of illness and trauma not only disrupts our normal ways of living, but also disrupts our connections with people who care about us. Caregivers who reach out for support gain the benefits of lessening their burdens and of feeling the warmth provided by people who care.

Too often, caregivers hold back from reaching out because of beliefs they have about doing so:

  •  Nobody else can do what I do for my loved one.
  •  My loved one won’t accept help from anyone but me.
  •  I’m too busy to even begin to think about doing anything more – even reaching out.
  •  The moment I start reaching out, our family will lose our privacy.
  •  I’m afraid of imposing on people.
  •  Reaching out shows weakness; doing it yourself shows strength.
  •  I’m afraid that nobody will come forward to help me.
  •  Since I’m able to handle things now, I’ll be able to continue to do so.

These, beliefs, while completely understandable and very common, are neither healthy for you as a caregiver or for your loved one. They get in the way of your resilience and your capacity to sustain yourself for however long your caregiving is required. Each week, I will be focusing in on one of these self-limiting beliefs and invite you to come along with me in exploring those that you are now willing to let go of and change into ones that help you not only survive, but thrive.

So let’s get started:

Nobody else can do what I do for my loved one

Think of the whole range of “things” you are currently doing. First think of the practical ones: dressing, managing and administering the meds, shopping, preparing, serving and cleaning up after meals, assisting with bathing and toileting, and so on. Now focus on the emotional and spiritual ones – showing love, being a trusted confidant, giving emotional support and comfort, etc.

Nobody else can do these things exactly how you’re doing them or would your loved one experience them in the same way if they were done by people other than you. No one else is so attuned to your loved one’s needs and preferences and, most likely, your loved one is most receptive to your way of doing these things. And, no one else would be as committed to your loved one’s comfort and be as vigilant as you are. This much is true.

But, the trap here is believing that, since no one else can do things the way you do, that no one else can do them or do them satisfactorily for you and your loved one.

Let’s take a look at some of those practical things that I listed above. Take one area for starters, e.g. grocery shopping. These days, it’s not like the days when our mothers used to look the butcher in the eye and tell him she wants a better cut of meat than the way he did it last week. Shopping simply means meal planning, list making and going out and getting the groceries – all very delegatable tasks. When you think about, I think you’ll agree that many if not most of the practical things can be done by others. Not necessarily with your intimate knowledge and way of doing things, but in their own ways. And, similarly, other people will bring their own and distinctly different ways of providing emotional and spiritual support as well.

Bottom line: Is this a belief you’ve been holding? If so, how does it serve you? How does it hinder you? How might you re-write that belief so that it serves you better? For example, “There are some things that other people can help with. I’m going to try this out with some simple things.” What practical step can you take to try out that new belief this very week? Let us know – by commenting on this blog. You’ll help yourself and other caregivers by doing so.