Article by Wendy McCance
Over the years, I have known several people who have had cancer. No matter how close I might have been to them, there are many questions I didn’t feel right asking them and a lot of information I just didn’t know or fully understand.
What I always wanted to understand the most was how, deep down, the disease really affected them emotionally. Were they scared, regretful of not doing more before they were diagnosed, did they feel they could fight through their disease or could they tell that fighting wouldn’t help them? These are such deeply personal questions that I just couldn’t ask. Of course everyone must have different answers based on individual personality, the type of cancer, what stage they are in and so forth. Even so, it would have been nice to have connected on a more personal level. I felt I was never there the way I could have been because I just didn’t understand what they were experiencing physically or emotionally and I didn’t know how to do more without feeling like I was invading very personal and private space.
I am in the very early stages of having cancer and there are still many questions that plague my own mind. What I have figured out so far is that I hope family and friends never feel uncomfortable asking me the tough questions. It’s just another part of who I am and I want to remain close with those I love. Part of being close is for those around me to truly understand who I am, how I am dealing with what is in front of me and feeling comfortable having conversations with me that no one ever wants to have.
I have been struggling to find my own balance to come to conclusions that are satisfactory for my own life. When I was first diagnosed, the hardest thing for me to work on was my fear. I was so incredibly overwhelmed that I cried all the time. The fact that multiple myeloma is not a cancer that can be cured and has a short lifespan didn’t help my state of mind much.
Of all of the things for me to be most concerned with in the beginning, my biggest worry was, how do I present myself as someone who is strong and unafraid? It seems that the comments you hear again and again from family and friends of the patients is how strong they are, how they never show fear, how they are able to take it all in stride, how impressed everyone is with their ability to stay so calm and determined to power through.
Talk about pressure. I felt like a failure at handling a cancer diagnosis because I was so scared and wanted to talk through the fear. I felt like I was letting those around me down because I couldn’t mask my feelings very well. It made me wonder how many other people felt the same way when confronted with such a hideous diagnosis. Where did these patients find the strength? Why was I already failing so badly when I hadn’t even started treatment?
Months have passed and the intensity of my feelings have calmed down quite a bit. My latest worry centers around the burden aspect of having cancer. I am having trouble wrapping my head around the financial and emotional toll my health will take on the family. I have had times in my life where money has been scarce and I don’t want to leave that burden on my own family. It’s one thing to go through a tough time and be able to help dig out. It’s quite another when you are sick and dependent on those around you to do all the digging while you are unable to help. It’s even worse knowing it’s your fault the situation even exists.
I get anxious thinking about the family as caregivers and having to help me, worry about me and feel drained emotionally because of me. I realized early on that if I had a curable cancer, I could see fighting it. I could drain a bank account and not feeling as guilty about getting some help because there was a much better chance that I would get through it all and live many years in which I could show my gratitude, help dig out and be there for everyone else.
When you hear that there is no cure for your cancer, that once you begin treatment the odds are that you will live for 5 years and that those years will be spent sick in bed, you begin to question why you should go through the treatments at all.
Obviously I still have a lot to figure out. I want to know more about what others with multiple myeloma have gone through. I want to find out if they felt it was worth it. Would they have just lived their life without treatment if they could go back and do it again?
My doctor told me early on that once treatment began, the normal course would be to do chemo and then a stem cell transplant if I was strong enough to handle it. I read up on what it would be like and this is where I began to wonder about the value of having treatment. After you have been sick on chemo, you are put in isolation in the hospital for the transplant. You are in the hospital for one to two months. After you get out, it takes nine months to a year before you begin to feel like your old self. Along the way, you can have serious side effects including organ damage. Once home, you need to have a caregiver and the house has to be prepped to minimize the chance of getting ill. Most of the year is spent either away from everyone isolated or sick in bed. If the statistics are right and 5 years is the norm, how can you take a full year of being sick and isolated from others? Of course this is if all goes well and there are no complications either.
I am just grazing over the surface of what I might have to experience, but the bottom line is, it’s a lot of money, it’s people having to readjust big portions of their life just to accommodate my own needs, it’s isolation from those I love for weeks, it’s being sick for a good year etc…
How could I possibly put anyone through this? How could I live with myself? It all sound so selfish and self-serving and I just don’t know if I can go there.
I will continue to get information on what to expect and how others have handled it, and thankfully this is not an immediate issue for me. It’s just hard to look into the future and try to prepare your choices when you are currently feeling pretty good and the decisions all sound so miserable.
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