Advocating for Your Health No Matter What Doctors Say Could Save Your Life
Advice from a rare cancer survivor
I remember the day I exchanged wedding vows with my husband. We had been together just over a year, but the first half of that was long distance, since we met (in person) when we lived in different countries. We felt like we had been through the ringer to withstand the obstacles of distance.
We were still in the honeymoon phase when we got married; we had absolute faith, but it was the dumb, blind faith of young people in love. “In sickness and in health” seemed like a romantic, far off footnote, not the terrifyingly daunting challenge it would present us long before it hits most couples in marriage.
Almost two years exactly after we got married, I began having symptoms of what would eventually end up being diagnosed as aggressive primary mediastinal Non-Hodgkins lymphoma. It is a rare subtype of lymphoma that oddly often targets young women, wouldn’t you know.
My diagnosis took almost three months from the onset of symptoms, and would have taken much longer had I not raised a bit of a stink and advocated for my health with the only options available to me.
I felt defeated and depressed by the medical establishment’s attempts to dismiss me many times during the path to diagnosis, and it would have been much easier to give up and wait my turn. If I had done that I don’t believe I would be here today, because of the fast growing nature and location of my tumor.
My first and main symptom that something was wrong was when I developed swelling in my neck and face that was painless but dramatic, overnight it seemed. Unfortunately my primary GP was on leave, and so began a frustrating series of doctor’s appointments.
These doctors possibly didn’t realize how bad the swelling was because they didn’t know how I normally looked, and I had no lumps, no pain, or other red flag symptoms. (My swelling was actually the classic sign of the type of lymphoma I had, but doctors are trained to recognize lumps and night sweats as the main symptoms of blood cancer)
Also my age (28) and otherwise good health seemed like the predominant factor for ruling out that anything could be seriously wrong with me.
I was prescribed diuretics, to no effect. The swelling had begun to make it difficult to sleep because it made me cough. For over two months I slept sitting up, also the fluid build up was worse if I was horizontal during sleep. I had a non-urgent referral with a head and neck doctor, which on the NHS (I live in the UK) can take months. I was young, and kept being told it was nothing serious.
In my gut, I knew something was very wrong. I tried to bump up my appointment by going to A&E. After a six-hour wait I was sent home by a junior doctor who simply re-iterated what the GP’s had said.
I felt defeated but terrified enough to stay mad. The following week I went into yet another GP’s office and had an epic hysterical meltdown. I was genuinely distraught, I remember I kept repeating “I know something is really wrong with me” between sobs.
By some miracle/terror at a crazy female invading his space again more likely, my appointment with the specialist got bumped up by several weeks. It was still almost a month away though. I first saw a specialist in early December, my symptoms had begun in September.
The appointment with the head and neck doctor was not going well. I had brought in a before photo to show what I normally looked like, and I think this was the only thing that saved me. He was like all of the other doctors I had seen, fairly dismissive of my symptoms.
He said he would arrange for me to have an x-ray almost as if placating me. I felt a strange combination of relief and terror. I still remember that first x-ray.
For whatever reason it took a few days to read it, but when I got a phone call at work from the hospital, I knew in the pit of my stomach it was bad. “Yes there appears to be a mass on your scan, please come into the hospital as soon as possible”. “When?” I asked “Now, today, bring someone with you” they replied.
The moments after that are a blur. I felt my life as I knew it was over without knowing anything. “A mass” I repeated in a daze to a couple of co-workers, having no idea what it really meant.
My husband picked me up in a taxi and we went to the head and neck man’s office and waited for around a half hour. I remember he was nervously tapping his knee and being (understandably) anxious and it annoyed me. Already I was no perfect sick angel.
The doctor was apologetic about the wait, so already I knew it was bad news. He had a nervous giggle, which made the delivery of his words even more surreal. I had a large mass in the center of my chest, it was likely one of three options: thymus cancer (not good), a benign tumor (unlikely), or Non-Hodgkin’s lymphoma.
What surprised me was how shocked I still felt, despite thinking I knew something was wrong for almost three months by this point. Getting told you have cancer feels like you have bought a movie ticket to someone else’s life. “Not me, surely?” But also, “Ah yes, of course me”. I was twenty-eight. It felt absurdly surreal. You enter a fugue state, it’s all too much to comprehend.
My final diagnosis was unfortunately no more straightforward than the events that led up it. This was not really the fault of the doctors, more a combination of the awkward location of my tumor being nestled in with my most vital organs and a bit of bad luck I think.
I ended up needing three biopsies to get a diagnosis. The first biopsy was inconclusive as the tissue retrieved was “necrotic” or dead. That time they made a small incision into my breast. The second biopsy they went in through my side, but again for whatever reason it didn’t work.
It was all a bit of a conundrum. I had a surgeon who flew in once a week from Amsterdam, so for three weeks in a row we did the biopsy surgery hospital admission dance. The final biopsy ended up being pretty dramatic; open chest surgery, cracking me open like they do with heart surgery. They wanted to remove as much of the tumor as possible.
My surgeon took me into a separate room to have the “I need to tell you you might die” talk. I was going to be in intensive care when I came out of surgery. I still tried to make light of it by telling him to get as much of the f*cker out as possible (I don’t remember if I swore but I do remember him being bemused by me).
My surgeon was tall, athletic, good looking. He had bright blue eyes, he looked like he skied and had romances with stewardesses. A pillar of health. He was pleasant enough but it was discomfiting to know he cut my body open so many times. I grew to feel less human, more lab rat. I was terrified but just about holding it together.
I was a mess physically after the third surgery. I had a gruesome surgical wound, tubes that drained fluid from my chest into a pair of buckets that I had to carry with me for a couple days if I walked anywhere, and (blessedly) a morphine drip. I had a portable toilet in the room that the nurses were supposed to help me use that I couldn’t bear the idea of. To have your body fall apart so catastrophically so quickly is not something anyone can ever be prepared for.
Finally they were able to give me a diagnosis: Non-Hodgkin’s lymphoma. It felt both mundane and shocking somehow. It’s one of those cancers you hear about people getting but it’s still like, “Really, what the hell?!”.
My odds were simultaneously awful but also good, in that it could kill me, but if it responded to treatment I could have a full recovery. Other forms of lymphoma are far more chronic and require many rounds of treatment over many years sometimes.
Like my surgeon, my oncologist had blue eyes. I decided that blue eyes were a good sign, were hopeful, were a thing I could trust. My oncologist looked me in the eyes and told me what was up, in unflinching detail, from our first meeting.
He did give me hope, he didn’t mollycoddle me or whitewash things, and this was the only thing that kept me going at various points during my treatment. Another human being acknowledging the reality of my situation, because as I mentioned here, cancer can be incredibly isolating and dehumanizing over time, was a life raft for me.
I hope my cancer diagnosis story is if nothing else, a cautionary tale about fighting for your health, and listening to your convictions that you know your body better than the first line of the medical establishment sometimes. I apologize if elements of it were not for the squeamish, but I think it’s important to emphasize that I was a very ill person who doctors dismissed as healthy appearing, for months.
Sadly I have read plenty of similar stories to mine especially regarding young people struggling with getting their cancer diagnoses in the years that have passed.
I still think doctors don’t listen enough, recently I had a doctor half my age say that a freckle I was worried about was most likely nothing (I knew it wasn’t nothing, and luckily he took a picture and I got a basal cell cancer diagnosis on it from a dermatologist quickly). It’s nothing to worry about; I just mention it because I still get dismissed by doctors from time to time, and it’s never not frustrating.
We shouldn’t have to advocate for ourselves the way we sometimes do, but it is so important to listen to your own instincts about your body and stand up for yourself where possible.
I know it’s scary and not easy sometimes, doctors can be very minimizing and intimidating whether they intend to be or not. I do hope more people start advocating for their health when necessary, because sometimes no one else will, and sometimes that might save your life.
This article was originally published by the author on Medium.
About the Creator
Hi, I mostly write memoir, essays and pop culture things. I am a long-time American expat in Scotland.
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