I Have No Idea What I Am Doing

by Kirsten EfremovApril 26, 2019View more posts from Kirsten Efremov

The challenges of navigating the adult health care system from a pediatric state of mind.

Editors note – Kirsten is a three-time cancer survivor from Canada.  On November 20th of 1998 at the age of 10 her life was forever changed and her cancer journey began.  This is her story of going from a pedicatric hospital to an adult hospital and the challenges it presented.

Going from a child to adult happens gradually over time: Getting a part time job to ease you into the workforce; learning how to drive; parents teaching you how to cook, clean and be self sufficient. Your parents are there but they are trying to let you grow and adapt to becoming an adult.

However, within the health care system the change from childhood to adulthood happens abruptly, after your 18th birthday. And, for me it took place during my medical appointments. It’s like some cruel joke. Almost like being thrown in and you either sink or swim. Unfortunately, a lot of people get lost in the cracks of the system and they never get follow-up and/or get symptom management or aftercare treatment for long-term side effects.  You are an adult now and it is time you need to think about your own healthcare with no guidance. There is no safety net. No one to fall back on. You are the lead person of your health care team.

Now, as Julie Andrews sang it, let’s start at the very beginning, it’s a very good place to start.

Diagnosis

At a pediatric hospital you aren’t so much told but informed. Your parents are the ones that are told, “Your child has cancer”. You are then informed and told that you are now going to undergo three years of chemo.

Sadly, in 1998, when I was first diagnosed. I didn’t get it. I didn’t know what cancer was. So I was like “okay cool when can I go home” and the answer to that was NEVER!! Realistically, no matter who you are, once you are told about that cancer diagnosis, home is never the same. Nothing is the same. You just can’t go home to what life used to be.

During my years at the pediatric cancer hospital my parents made the decisions and had to go along with their decisions. Parents make most choices for their children. I can imagine most of the parents out there wouldn’t let their child decide whether or not to have cancer treatment.

However, when my cancer relapsed the doctor told my mom and me together. I wasn’t kept hidden from the diagnosis. We had a sneaking suspicion of the relapse based on my symptoms, so it would have been kind of shitty to tell my parents without me present.  Being told of the relapse was traumatic; like full on traumatic balling, screaming, and tissues grabbing trauma. My doctor actually had to leave the room for a couple minutes because our reaction affected him as well.

Telling someone they have cancer is very different when you consider the age of the person. When you are old enough to understand but still young enough to be considered a child, a second cancer diagnosis is very traumatic; but your parent is in the room for support.

In the adult world, it’s not the same. I was actually told I had cancer for the third time over the phone while attending school. After the call, I had a class to go to and then work. I didn’t call my parents or anyone else because I just couldn’t do that to them.

After that experience I felt as though some physicians don’t think young adult cancer is such a big deal. You’ll get treatment and be fine. But it is never that simple, especially now, when many hospitals or labs are giving you access to your test results before you see the physician.

Probably not the best way to get a cancer diagnosis.

When I arrived at Princess Margaret, I was the focus of everything. Being spoken to by the doctors  scared me a little. In the past, I was talked at and my parents answered the questions. But when the doctors at Princess Margaret directed their questions to me, I found myself looking at my parents for confirmation or validation. It was like I mattered for the first time in my health care but also now I was in charge and I didn’t know what to do next.

Treatment

I am finding this aspect of my experience  to be significantly different in the adult world. As a child with leukemia, I was given a protocol that was three years in length. Both times (first and second diagnosis). So, I went through a total of six years of chemo. Six fucking years!

But if I was an adult at that time, and my results had come back positive it would have been six weeks of radiation. WTF is up with that.  I know the types of cancers are like comparing apples and oranges (or leukemia and oral cancer in this instance) but I hear it from my peers. Their treatments don’t necessarily go on for as long, or are as intensive. *

*[Editor’s note: Pediatric leukemia protocols are different than adult leukemia protocols. If you have any questions please speak to your oncologist.]

After Care

This is the best part yet hardest part of any cancer journey, because you are 18 and transitioning to an adult cancer hospital. Congratulations and may the odds be ever in your favor! You are now in charge of your own health care and the bubble that was protecting you in the pediatric world, is not in the adult world.

I went from the pediatric to adult medical world not knowing much about my care, how to continue with my care, how to get the best care or even know what future care is needed. I was very naïve at the time. It wasn’t easy then or now. Constantly advocating for your own health can be tiring.

Five years after my transition from a pediatric hospital to an adult setting, I heard about a program at Princess Margaret Hospital. This program was the Pediatric Oncology After Care Clinic. It was run at Princess Margaret but has practitioners from the Sick Kids hospital. They monitor pediatric cancer survivors into adulthood and beyond because, guess what me and many other childhood cancer survivors are guinea pigs, case studies or an experiment.

No one knows how chemo in children affects them as adults. We require a whole different level of follow up care than that a regular hematologist/oncologist can or will provide. We need a team, a focused team, to help monitor the potential effects (this can also be very relevant to the Young Adult Community).

My adult oncologist is one who treats patients on active chemo, he doesn’t really know how to treat a young adult who had childhood cancer or know what to prepare for the future. I had been seeing him for about seven years before I knew about the pediatric cancer follow up clinic. When I went to the follow-up clinic they asked me when was last time I had an echo cardiogram. I had no idea but I knew it wasn’t recently and probably hadn’t been since I was treated at the  pediatric hospital. They told me my oncologist should have ordered one echo cardiogram every year for ten years, post treatment, to monitor my heart.

This is because of the high doses of one chemo drug could damage my heart and I hadn’t had ONE ECHO IN SEVEN YEARS!!!! Little to say I was shocked. How could my adult oncologist miss this!! Well it didn’t take me long to figure out. He doesn’t deal with people my age often. He doesn’t deal with the long-term side effects of cancer on young people. He deals with current effects on those currently battling cancer. This is a problem not just for me, but for those young adults who need follow up in the future. Who is looking out for these young adults?.

In one appointment you go from sitting in a waiting room full of screaming children to sitting in a waiting room full of older adults (and by older I mean 50+ years). Nothing against them, I know a few older adults and they are awesome, but their cancer experience is way beyond different than anyone under 39 years of age. They sit and look at you like why the fuck are you here and I am like why the fuck am I here.

Where are all the young adults?

I want to talk to my peers about the smell or good places to eat. Many older people groan about woe is me battling cancer and I am like dude, by the time I was 30 years old and I had cancer three times, shut your woes up. Not saying they aren’t legitimate but I have suffered too and I did it with a smile because I had to.  The waiting room sucks, all we want is pizza, friends and maybe some comedic satire playing on the television rather than silence, no eating or drinking and the news in the background. Cancer waiting rooms are so glum in adult hospitals.  But that’s a whole other can of worms that the young adult community faces.

I am now 31 yrs. and at 28 yrs. I had my young adult cancer experience. At this point I had only been dealing with the leukemia doctor. Now I have another cancer team – the Head and Neck Team and let me tell you WHAT A FREAKING DIFFERENCE.

These people are amazing.

It’s very confusing how one clinic can be so different from another. In the leukemia clinic the doctors see you differently. I swear I have confused a lot just by being under 35 yrs.  It’s like they enter the room and are all of a sudden stunned and they forget how to be a doctor.  But in the Head and Neck clinic they are cool (90% of the time).

However, I had never had a cancer diagnosis as an adult and didn’t know what to expect. Let me tell you. When you are an adult the doctors ask YOU the questions.

Doctors ask YOU how you feel. If YOU smoke or drink or do drugs or if YOU have a history of cancer. They don’t ask you while looking over your head at your parents. They look at YOU! Plain and simple!  This freaked me out because when the doctors came in they took their time to ask ME everything.

It was like finally my parents weren’t in the room and I was the center of attention and all of a sudden very uncomfortable.

I was now in charge of my care. There was no one to fall back on. I didn’t have a doctor to follow me through everything and know where we were. I had to know everything. I didn’t have a social worker seeing me at every visit and asking what I needed or how they could help. If I needed something I had to ask and sometimes doctors won’t do it because of the age old saying, your too young and I don’t want to give you more radiation/waste your time/follow-up on that because it is probably nothing.

Going from a children’s hospital you are very taken care of in every aspect but when you switch to an adult hospital you all of a sudden have to become of your own physician.

No one is there to do it for you

It’s like the old metaphor you either sink or swim. Sadly some people sink and get lost in the transition. Others are able to float and maintain their status. The final few are able to get their heads above water and swim to the stairs to get themselves out. We need everyone to get to the stairs.

The Finale!

I have been seeing a lot of people post about “ringing the bell” when they are done with treatment. I have never actually rung the bell. Not because I am palliative or will never finish chemo but because at children’s hospitals they never had a bell, you simply finished treatment. Then as an adult I just had surgery and that was my treatment and I never got to ring a bell. So I have mixed feelings about this bell issue.

I don’t quite understand the bell.  Maybe it’s symbolic.  But some people may never get a chance to ring it. I feel like we should get a gold metal instead or a cash prize or a puppy!

It’s up to us to support, encourage and talk to our peers, our nurses, our family and our doctors. Have your voice heard and don’t ever be afraid to ask, repeatedly, for something you think you deserve. And remember, You are NOT alone.