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Sunday, March 23, 2014

As a Person Living with CML; What DO I Want?

Living with a chronic cancer, or any other chronic disease for that matter, is difficult; and that is a fact. We have good days, we have great days; we have bad days and we have unbearable days. For me, one of the most difficult aspects of living with a chronic cancer is the effect that it has on my husband, my family and my friends.

We often complain that “no one” knows what we are going through, and that is a fact; we are the only ones that truly know just how bad our pain is, or how completely fatigued that we really are. No one will ever understand our fear, our concerns or the overwhelming burden that our disease places upon our soul, and the lives of everyone that care about us.

That being said, what do you do? What do you want?

Cancer and chronic disease support is readily available. For many, Facebook groups are a great place to vent, share triumphs, failures and fears. It is a great place to share information and to have a relationship with someone on common ground. Sometimes that is enough; other times, we need more.

We need something from the people in our everyday lives; often we do not even have a clue what that something actually is. Sometimes it is nothing more than validation; “I can only imagine how hard this must be for you, and I am sorry.” Sometimes it is more; like rubbing your hands or feet when they are completely numb, making dinner or even filling the bird feeder.

For me, it is really difficult to ask for help, especially from my husband who already has to bear so many things, because of my illness. I do not like to burden him, or anyone else for that matter. What I need to remember is that often, the people in my life feel helpless. They know that I have cancer, and they know that they cannot “cure” me. They do not know what to do, or what to say; yet they want to do something!
I need to remember this and I need to allow them to help me. I know that by allowing them to help me, I am also helping them. I am allowing them the opportunity to show their support, and their love; I know how good it makes me feel to help others, and by refusing help, I am taking that feeling away from them.

So now, having said all of this, how do I accomplish this monumental task of allowing others to help without becoming burden; a whining, sniveling, complaining, entitled cancer person? I suppose the first thing that I need to do is to make a list; a list of things that would really help me, and then I need to keep it available in the event someone says, “What can I do for you?”  Of course my standard answer is, “Nothing, but thank you.”  So I will have to learn to say, “Well, here is a list of a few things that would be helpful.”

I am not promising that I will be able to do this, but I am promising that I will try!

Here is a sample list of things to consider allowing someone to do; on occasion!

                               List of Favors
   1. Offer to run errands; such as picking up prescriptions or groceries.
                     2. Offer to take a person to a doctor’s appointment; sometimes the wait is long and this      creates a perfect visiting opportunity; quality time is precious.
                     3. Offer to walk their dog.
                     4. Do a once a month house clean; top to bottom. Or even just one room of choice.
                     5. Make a pot of soup and freeze in small batches for easy, quick meals.
                     6. Offer to help set up recurring bills on automatic payment schedules.
                     7. Offer to make phone calls.
                     8. Lend an ear; sometimes just listening is just what the doctor ordered.

As I write this, I realize how fortunate I am, to have people in my life that actually want to help. I want those people to know how grateful I am for their willingness, and how much a truly appreciate them.  I am blessed beyond belief and happy to be alive!


Thank you, Caregivers!

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