What the oncologists don’t tell you

Chemotherapy from the Patients Point of View

What the oncologists don’t tell you

Being told you have cancer is one of the biggest shocks you will experience.  Being told you are in stage 3 or stage 4 is more devastating.  The next shock is making a decision about radiation and chemotherapy to kill the cancer, which also kills parts of your body and mind.  Honesty from the oncologists and staff would help but it’s hard to find.

I let myself be talked into chemotherapy and radiation treatments.  For me, it seemed like the tiny sun in a dark dismal diagnosis.  I may have turned it down if the oncologist had been honest about the effects.

The first big lie is a video you have to watch prior to your first treatment.  The video is similar to pharmaceutical commercials.  It touts the drugs being used and tells you some people can work right through chemo.  It offers helpful suggestions for making the chemo treatment easier like walking and exercises for twenty minutes a day, eating several light meals instead of two heavy ones, stay hydrated by drinking lots of fluids, and pack a light bag with entertainment items in it for those long treatment sessions.  The video, like the pharmaceutical commercials, highlights all the great benefits and wonderful things you can do to lessen the effects of the chemotherapy, and just like the commercials they insert the warnings very subtly throughout.  The benefits seem so easy and delightful that you go into chemotherapy without a fear.  The subtlety of the warnings barely sinks in.  You later learn that non-stop puking and diarrhea prevent all those lovely suggestions from being utilized.

The second lie is a lie of omission.  They do not tell you that every cancer treatment varies significantly.  They don’t tell you the video may not apply to your type of chemo at all.  They don’t tell you that each chemo treatment can cause more and more side effects which worsen per treatment.

The third lie is also a lie of omission.  The chemo room is about 50 to 60 degrees.  It is practically icy.  The coolness is needed to prevent germs from growing due to cancer patient’s low immunity.  The cancer centers keep a small amount of blankets on hand, but when those run out you simply freeze to the point of painful shivering.  Always bring your own blanket or jacket for the chemo room.

The fourth is a lie of expectation.  The cancer center promises caring doctors and individual support.  Yet, I found myself making many of my own appointments for specialists and tests, while hovering over an emesis basin puking my heart out.  The staff had problems with follow up, and often dropped the ball on scheduling needed tests and procedures.  Patients are just too sick to handle these things, and yet are forced to at times.  Even the social worker who supposedly helps with finances and severe depression (usually caused by lack of finances and other worries) is fairly useless.  I was referred to the social worker when my insurance ran out, my income was severely reduced to unemployment, COBRA ran out, and I was depressed to the suicide.  The worker handed me a packet of welfare papers and told me to apply for Social Security Disability (SSD) and Supplemental Income (SSI).  Most of these applications required an in-person interview, especially the welfare papers, which required three or more hours waiting in line at the offices.  I completed them all, suffering in pain, while sitting on a walker and puking into an emesis bag.  Out of all the wasted time, three different days of line waiting totaling 11 hours, I received a mere $61 in food stamps.  Mostly the worker was concerned about the suicidal thoughts.  She would ask me if “I had a plan” for suicide, to which I would answer, “Doesn’t every cancer patient?”  What a stupid question to ask someone who is terminal!  The worker also promised to check on me regularly due to my sever depression.  I finally contacted her one time, and she never contacted me again.  The last thing a cancer patient needs is more disappointment.

I never received enough up front, honest information about the chemo treatments.  The truth about chemotherapy is each type of cancer and each stage of cancer varies your treatment.  The more severe the stage, the more severe the treatment. 

I am in stage 3, esophageal cancer.  Many cancer patients receive an hour or two of chemo drip once a month and that’s it.  Others only take chemo pills.  Not so for me.  I received a three hour chemo drip at the beginning of each month, followed by a constant slow drip of chemo from a bag I wore on my side for the next four days. 

During the first treatment I suffered no ill effects.  I thought this was going to be easy.  The day I had the chemo bag IV removed I started getting sick.  The nausea, diarrhea and vision problems lasted about ten days.  That didn’t seem too bad.  I had a little less than two weeks to recover and feel well until the next monthly treatment.  It was up and down during those two weeks, going from dehydration to hydrating IVs every few days.  I was extremely tired but surviving it.  After being so sick for ten days, these next few days felt wonderful even though I was still mildly sick.

During the second treatment, I again suffered no ill effects until after the slow bag was removed.  This time I was so sick I was bedridden for three weeks and then hospitalized for several days.  I lost another 26 pounds.  Nothing the oncologist attempted could stop the nausea and diarrhea.  My potassium dropped to a heart attack imminent level.  In the hospital, I received four IVs of potassium and four IVs of magnesium.  After two days, I was feeling a bit better and discharged from the hospital.  The oncologist said he would give me a week to relax and feel better before the next treatment.  I knew I would not be able to make it through another session.  I asked my oncologist whether the treatment sessions would continue to get worse, making me sicker and sicker.  He said it was possible.  I stopped treatment for fear the treatments were going to kill me before the cancer could.

My COBRA ran out at this time and so did the unemployment.  The options for financial or other help when you have cancer are so difficult to obtain.  Even being terminal is not necessarily a condition that is considered disabled.  If you have any type of income and your husband is not disabled, it is unlikely you will receive SSD or SSI.  Welfare in Nevada is exceedingly difficult to obtain as well.  It can take weeks to get an approval for a medical card and food stamps are so minimal they are not worth the long wait in line to see a case worker.

The social worked will also refer you to such things as commodities, food banks, and charitable services.  Commodities and food banks, again, require long waits in long lines.  When you are so ill, you just cannot do this.  I found it inconsiderate to suggest such things while I sat in wheelchair to weak to lift my head.  They also offered free rides to and from chemo sessions.  But their rides were offered to many and the bus stopped several times to pick up and drop off patients.  This made the already long trip (45 minutes one-way) turn into a two to three hour ride each way with very sick patients puking into chemo bags, making the rest of us feel even sicker.  I called on friends for transportation rather than puke my way to the appointment over a three hour ride.

Cancer is an ugly disease.  It’s a shame that the oncologist and cancer staff are not more honest and compassionate about the addition illness and indignities they cause us.  And it is shameful that those who are disabled or suffering from such problems cannot skip the lines or have a representative wait with their paperwork while the worker gets additional information from the applicant by phone.  It’s called “Dying with dignity.”  It’s a long shot for cancer patients.