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May 29, 2021

Hospital Visits Are Giving Me PTSD. Part 1: the diagnosis.

Photo by Karolina Grabowska on Pexels.

Ontario’s Public Healthcare System is in serious trouble.

I’m not going to propose here how to solve this crisis, I am not qualified to discuss solutions.  But I will share with you my experience so far with our Public Health System such as it is in London, Ontario. And I know I’m not alone in experiencing these kinds of issues.

I was diagnosed with stage 4 Metastatic Breast Cancer three months ago. I had no bumps, no lumps, no symptoms at all except what I thought was related to depression and hormone changes. I am only 42 years old. If I had not had a fall in December and thought I broke my collarbone, who knows how long it would have taken to discover the cancer?

There is a significant history of cancer in my family (my mother is currently battling her third round of colon cancer and has just gone through surgery again yesterday). Yet my gp refused to do genetic testing on me or send me for mammograms, saying I was too young. I didn’t push despite my gut instinct.

My oncologist said with my family history I should have been tested at 25 and having mammograms regularly from the time I was 30. Now I have a terminal illness that I never had a chance to catch early. I am one of only 6% of Metastatic Cancer patients diagnosed Metastatic in initial diagnosis.

When the urgent care doctor first told me I had cancer, I was by myself. I had gone in to urgent care thinking I had broken my collarbone as a lump had appeared overnight just above my collarbone on my right side two months after my fall. Also, due to Covid, no one is allowed to go in with you to urgent care. But I wasn’t expecting to get the news I had breast cancer either. You could have blown me over with a feather. I was in shock.

The urgent care doctor was wonderful and sent referrals right away for a ct scan that happened the very next morning, confirming her diagnosis of breast cancer that had spread into my lymph nodes and also a large mass in my chest. She had also sent a referral to a surgeon.

Sometime that first week, (it’s all a blur) I got a call from the hospital telling me to be at the cancer centre at St. Joseph’s hospital at a specific time. They did not say what the appointment was for.  We arrived (I brought mom with me and told the 20-something girl screening for covid that mom was coming in with me as I had just been given a stage 4 diagnosis and they could call security if they wanted to stop her). So we arrived at the waiting room. I was talking to a very nice woman (20-years surviving with breast cancer) who told us it is the surgeons office. So now I’m thinking are they doing the biopsy today then? What will happen? No one had said anything to us for preparation or even given us the surgeon’s name.

When we were called in, we were sat by a nurse in a small exam room with an exam table and what looked to be surgical equipment on a table. I pointed it out to mom who said “looks like they are doing biopsy today”. (I’m nervous about needles and tend to pass out. I like to have a bit of warning about these types of things generally, I don’t like to be surprised). “ Would have been nice to know that “ I say to mom.

A man comes in, sits down and immediately starts asking questions about my family history of cancer. Who has had it and what types. Our history is extensive. So I repeat what I written down on the questionnaire they had given me in the waiting room. He stops and asks questions or says words that I don’t understand. I stop him and ask “I’m sorry. Who are you and what is happening?”  “Oh” he says. “I’m your surgeon. I’m Dr. Q (note: obviously I’m giving him a fake name).

He shakes our hands and clarifies for himself that I (not my mom) am the patient. So he goes through the genetics then asks me “ok so what do you know?”  And I tell him. At this point all I knew was what the urgent care drs had told me. So I repeat it to him that I know I have breast cancer and it is my lymph nodes and there is a mass in my chest. “Well “ he says “it’s worse than that. But let me go look at your chart again. I’ll be back” and he leaves the room. Leaving mom and I looking at each other. “Did he just say it’s worse than that?” I ask mom. “Maybe he’s just flustered “ she said. No. I don’t think so. But anyway, he returns after a few minutes and this is what he says :

“So it’s bad”. (I’m not kidding. That is exactly how he starts off. Verbatim).

“You have stage 4 breast cancer. It has spread to your lymph nodes in your armpit as well as  distal lymph nodes above your collarbone and along your chest pressing on your esophagus.  There is a large mass in your chest that is wrapping around your aorta and there is also a mass on your pancreas. There is no cure  and I cannot do surgery because of how large the tumors are and how extensive the spread.”

at which point the thought that went through my head was “so it’s really not my collarbone  I’m going to die from this.”  And I promptly burst out crying. so did Mom.

“ im sorry” the surgeon says “ I didn’t realize no one had explained any of this to you. I’ll give you some time “ and he left the room again, leaving mom and I to cry, mom holding me.  “I don’t want to die” I remember saying  “there’s too much to do yet  I’ve only just started.”  It didn’t seem fair.

We both were sitting in shock when 20 minutes later the surgeon peeked back in the door to see if it was safe to come back in.  Seeing that both women had stopped crying he came back in and said we were going to do the biopsy now and could I get on the exam table please.

I told him about my discomfort of needles and my annoying habit of getting faint just to warn him as I was getting on the table.  He joked that he hoped mom didn’t have the same tendency.  Then he went to where we saw the surgical instruments and said out loud, “oh  these are new. I’ve never used these before”  then he said “give me a minute I need to just see how these work” at which point behind his back, I looked over at mom in alarm  did he just say that?! She looked worried.  I could hear this snapping sound from something he was doing and he said “ok I got it”.  Then he came over and gave me a freezing needle, which worked fast.  Then he says “ok small poke” which there was, followed by a very loud snapping sound that scared me to death and I jumped half a foot, nerves already shot.  “Oh “ he said “did that hurt?”  No I told him but I didn’t expect the snap.  That startled me.  “Oh yes “ he says “I should have warned you about that. four more” he says  and proceeds to take four more samples.

I want to get the hell out of there and go home.  I’m traumatized and in shock and I’m scared and I don’t like him very much. I’m not sure if he is trying to be funny but I just want to go home.   But “now I’m going to send you down to the lab to get some bloodwork “ he says “my nurse will give you a requisition and I also want her to you up with social work”  then he leaves.

So mom and I walk down the hall, down the stairs, I don’t even know where, it’s all a blur.  My mind was in shock and I was just trying to hold it all together.  I was shaking badly and just wanted to cry.  I remember thinking I was a “walking dead woman”

we somehow found the lab and the woman took me in behind a curtain where I sat down in the chair and immediately started bawling.  “Oh honey” she says to me kindly” who did you see?” I ask her sniffling to repeat her question and she says again “what surgeon did you see?” And I tell her she shakes her head saying “we can tell who a patient has seen by the state they are in when they get here” she says  “he’s an excellent surgeon, but he has terrible bedside manner” she goes on to tell me that her best friend had him and he had said the same things to her. she’s still alive today five years later and doing well the woman says. “have faith” she says  “wait until you meet your oncologist.  They are all excellent” she says  “you will feel so much better after you talk to your oncologist.”  I wish I had of gotten the nurse’s name to thank her. She will never know how much relief she gave me on that day.

Little did I know It would still be another month and a half before I meet my oncologist.

Part II: Dr.Q and my bad heart.

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