Having the type of cancer I have is a lot like having an invisible disease. After having a few negative days I decided t write a blog post about the things I really hate about the cancer I have in hopes of getting it off my chest. So here are just a few things that that top my list .
When I go in for my chemo/shots people always look at me funny. See I don’t look like I have cancer. I look just like everyone else. I also don’t get the traditional chemotherapy either. I get painful shots in the ass with a huge needle that lump up & become hot & inflamed. Just like most people I still get sick after my chemo/shot. About the only difference as far as side effects is my hair will thin, but I won’t lose it all. Unlike most people I will be getting this type of chemo for the rest of my life.
Something else that irritates me is people who go in for chemo they usually get a sheet of paper with questions on how they are tolerating the treatment and the nurses talk with them about it and what might help them. Because mine is not traditional chemo I don’t get the questionnaire or the face time. I go in wait for 45 min in the waiting room get the shot & leave. I have many of the same side effects as those on traditional therapy. I still get the nausea, extreme fatigue & abdominal pain as those on traditional chemo. They just put me in a different category because the delivery of the medication is by shot rather then by infusion. I always come out feeling like I really don’t matter. Mine is rare & they don’t know much about it. So I am kind of ignored because of their lack of understanding of the disease.
I get my shots every 14 days. Of those 14 days, 8 days I usually have measurable side effects. I will only have about 3 days where I feel well enough to do more than I absolutely have to do to keep my family going.
Days I feel good enough to venture out I have to be carful. Carcinoid Syndrome is triggered by many normal every day things. Which makes leaving the house difficult. One of the big triggers is exertion (physical exercise) even a trip to the supper market to pick up a few things will wipe me out to the point where I am wheezing & have abdominal pain to the point of doubling over & I will be sick for a few days after. Other triggers for me are every day stress, air quality, temp. and food. Honestly everything triggers this disease as it is directly affects the endocrine system (thyroid, pituitary & adrenal glands as well as the pancreas, heart, lungs, liver & kidneys).
The fact that it is incurable I am not fond of either. Sure I will live longer than a few years, more like anywhere from 15-25 years (from onset of syndrome), but it will be slow, nasty & painful.
The biggest thing I really hate is when doctors and others say, “Well you look so good.” I understand they mean well and all, but I always want to say “Well I don’t feel all that great, but thank you?” I honestly believe the Dr. forgets I am sick sometimes as well as so many in my life. I think maybe because I really try not to complain much. I try to lead a relatively normal life or as normal a life as I can. Some days though I really want to just whine about how awful I feel. I would really like to lie in bed some days too, but with my youngest (PA) that is not a possibility ever. I don’t want people to feel sorry for me but I would like people to understand that I am not brushing them off when I call last minute & say I really don’t feel well.
I would love to leave the house every day and be the “FUN” mom. I want to take PA to the park. I want to be able to take my older daughter to the mall & just window shop. I use to be a very active person. We use to do so active things as a family like hiking and tae kwon do. I am also one also one of those weird people who enjoy doing housework. I would love to be able to just get up and clean my house with out having to wonder if I will end up in the ER because I did too much. Simple things like doing laundry or doing dishes are almost impossible most days. I often have to rely on my husband & older daughter to do them for me.
Honestly I would just like to have my life back…