I’m gearing up for another high anxiety day, hoping to hear from loverman’s Oncologist with his Molecular DNA test results. We were told that it takes “about two weeks” to get the results. That was over two weeks ago. These results are the numbers that will tell us if he is truly responding to his chemotherapy treatment. The numbers that will determine where we go from here. The numbers that will allow us to exhale…

The cancer game sucks. And that is exactly how I feel about this entire cancer care process. It’s like game. A guessing game and a waiting game. Before I express why I feel this way, I will acknowledge that I am absolutely grateful for a lot of things. I am grateful that my Kevin is alive today because of the heath care that he has received, especially when he was admitted to the hospital. However, I am really disappointed with the outpatient cancer clinic care that he has received.

After he was released from this hospital, his first cancer clinic appointment was really warm and fuzzy. He filled out a symptom/side effect assessment then almost immediately his nurse took him back to an examining room. He was weighed in and had his vitals taken. Then the nurse introduced herself as our doctor’s nurse, asked Kevin questions, addressed any concerns we had and took notes. Because it was his first visit, he was advised that he had to have his blood drawn before each visit. So we had to get his blood drawn and wait an hour, but that was fine. We were a little taken aback when one of his assigned Haematologist/Oncologist’s “Fellows” met with Kevin to discuss his test results and his treatment plan. However, we just thought maybe his actual doctor was called away for an emergency or something. She gave us a cancer care binder and a print out of his test results for that day.

The second appointment was a little less warm and fuzzy, but it wasn’t too bad. We arrived early for blood work and completed the symptom/side effect assessment on the computer. About an hour after the blood work, very close to the appointment time, a different nurse took Kevin back to the examining room, weighed him in and took his vitals. She also took time to speak to him and address any concerns. About 20 minutes later, Kevin’s doctor met with him. We were happy to finally see his actual doctor, but he kinda rushed through the test results, didn’t even have them printed out and could not tell us the numbers. He just said that he was satisfied with the numbers because his white blood cell count was within normal range and explained that he believed it would take about 1 ½ years for Kevin to reach a “Complete Molecular Response”. Then he addressed some of Kevin’s severe side effects to the chemotherapy, told him that he believed the side effects would subside with time and sent us on our way.

The subsequent appointments were not warm and fuzzy at all. We always arrive an hour early for blood work and each time Kevin has waited over 2 hours after that to be taken back to a room, by a different nurse each time. He is always weighed in at each appointment, but his vitals have never been taken since his second appointment. He has also been seen by a different Haematologist/Oncologist at each appointment, even though his own doctor is in the nursing/admin area sitting in front of a computer. That means that Kevin has to re-explain all of his side effects and everything he has experienced to each new doctor EVERY visit. This is REALLY frustrating for him. Then, we always have to ask for print outs of his blood work and that is something we were told we would receive every visit and should keep in the cancer care binder. Also, some doctors seem to know very little about the disease and make Kevin feel like his side effects couldn’t be caused by the drug, even though the Imatinib/Gleevec website list the side effects! LOL Yes, some of them are uncommon and severe like uncontrollable body twitching, but they do happen and I have discussed the same side effects with people in CML support groups who have experienced the same side effects. We have also had to demand other blood work outside of CBC and molecular tests to rule out other deficiencies.

At the last appointment, Kevin had his Molecular/DNA test results. At first we were told that it would take up to two weeks to receive the results and if they were satisfactory, we just wouldn’t hear anything and that meant that Kevin graduated to appointments every 3 months and the results would be explained at that appointment. REALLY?! I told the doctor that was not acceptable for 2 reasons. NUMBER 1, Kevin is on disability through his work insurance and they will not let him go back to work unless he IS responding to treatment and he must provide those test results to his insurance company. If we had been seeing the same doctor at each appointment, that would have been understood because I explained and stressed that at every. single. appointment. NUMBER 2, cancer patients NEED to know their test results, especially with a disease like Chronic Myeloid Leukemia, so they don’t go flipping INSANE wondering how the treatment is working and to maybe prove that the side effects are worth the pain and agony.

We understand that he may not show a remarkable improvement at this mark. We understand that it could take up to a year and a half for him to reach a “complete molecular response”… But ANY improvement will give Kevin new hope and it will help him get back to his awesome self.

Since Tuesday Kevin has called his Heamatologist/Oncologist’s office 5 times. Each time he has had to leave a voicemail. Each time he has stressed the importance of receiving the results ASAP for his insurance company. Tuesday and Wednesday he heard nothing… not even a courtesy call from an admin acknowledging his existence. LOL Just now, as I was writing this, he finally got a call back. The results still have not been received. So we are still holding our breath.

I can appreciate A LOT of things about our health care system, but I can’t appreciate the lack of consistency and personal care that a person with a life threatening illness, like cancer, is entitled to. Seeing a different doctor every single visit is frustrating and confusing for a cancer patient. It would be ok in an emergency situation, but that hasn’t been the case. I also cannot appreciate the fact that patients are not acknowledged with the courtesy and respect they deserve. A quick phone call takes less than a minute, and if doing that is a problem administrative and cost wise, that really has to change. Leaving patients frustrated and in limbo makes them feel powerless, helpless and out of control. It makes them feel like they don’t matter. Eventually patients get depressed and snap… then they look like “crazy” difficult patients. My loverman hasn’t snapped yet, but I can tell you that he is right at the edge and I can only imagine how others feel. The inconsistent, scattered and impersonal care that he has received is unacceptable in my mind and I feel like it only contributes to more severe mental health issues in the big scheme of things. It’s bad enough that cancer patients need to deal with their disease and treatment side effects, they don’t need to deal with mental health issues that could absolutely be avoided!

Being this deep in the health care system has opened my eyes to a lot of things. It’s a scary place to be. 

Thanks for stopping by and listening to me vent! =)

Comments

comments