We’ve all seen the “helpful” pamphlets in the doctor’s office. They cover a multitude of topics. My oncologist’s office has a variety; none on colon cancer though. Regardless of the topic, there is real life information missing from those little brochures.
Things like, how your relationships change with a cancer diagnosis. It’s hard enough dealing with your own feelings. You spouse/partner, family members, children all are now thrown in the mix. It makes it difficult when you look “normal”, but your body makes doing simple things like watching a long movie or cleaning the kitchen a burden. Let me tell you, my poor house is nothing like it used to be. I have to give in and admit, I cannot do it all. I wonder if my family will ever realize that? I’m not knocking them. I know they see me as fine, regardless of the endless pills I swallow for two straight weeks.
Another thing missing is what happens if your spouse can’t work; even temporarily? Does it prepare you to have to surrender a vehicle because you simply don’t have the money to pay for it? Does the state disability workers care they haven’t processed your claim in over two weeks? Nope, they don’t; especially because you can’t reach a live person!
Let’s add just a bit of icing to this pamphlet cake of missing information. Let’s have a clinic director call and “empathize” with you about how horrible cancer is. Let’s have her say how much she wants me to be able to deal with this, but she cannot produce ONE local support group. Then let’s have her reference how I work and since my schedule doesn’t accommodate the only group 30 miles away and starts before I could get there, I’m not being flexible. To add a cherry on this frosted bunch of glossed-over, “we’re here for you” information, that she will compare “if there’s a cure 50-miles away, would it be too far to reach”.
Let’s put this in perspective. A cure is not a support group. A cure would negate the need for a support group. I bet she can’t tell the difference between apples and oranges, either. To say I’m angry is a true statement. These medical “professionals” have either been abusive, negligent or completely not interested in hearing me and/or acknowledging me and my need for LOCAL (as in within my own city – not clear across the county) support.
I have found a group of ladies, online, who are fitting my support bill. They are or have been through the trials and tribulations of the Big C. I can vent and I’m not called, “inflexible”. I can ask questions without reaching a never-ending, button pushing, automated system before reaching a nurse with an attitude who simply relays messages to/from my doctor. Speaking to your doctor on the phone these days is a mortal sin. You can’t possibly express yourself without the aid of a nurse misinterpreting the reason for your call.
The fundraiser is going ok, but it could be better. I am only $40 short of being able to afford two more rounds of chemo. I appreciate all who have, and continue to share my fundraising link. You really have no idea how much it means to me.
These weekly cancer journey updates are to make those who watch cancer from the sidelines get a front row seat of the reality of what it’s like to deal with cancer. It’s not about ribbons, even though I use one for this series. Life isn’t a marketing campaign. It’s tough, emotional, draining and those who have cancer live with an uncertainty as to what their life will be like, become and how long it will last.