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CONFESSIONS OF A CANCER PATIENT |
Stage 3, 2 Breasts, 1 Diagnosis
(Written from notations dated June 2018)
I was 36 years old when I heard the words “it seems you have multiple cancers in both breasts and will likely lose both of them”.
I wasn't as shell shocked as I could have been, thankfully events leading up to this day had me slightly thinking about the 'C-word'. I was anticipating bad news. I recalled the Sonographer after my initial ultrasound finished, leaving the room so quickly I was almost tasting the dust cloud they left behind them as they ran. They couldn't even look me in the eye. Then, the day of to get my scan results I had 3 missed calls from the GPs office and two voice-messages from a nurse to “make sure you’re coming in to get your results today”. I knew at that moment it was not a cyst. I of course, could not prepare for hearing the above words being spoken to me.
A following question “is it terminal?”
That one second of silence while the doctor inhaled his breath to speak was the loudest silence I will ever hear. “Possibly” was the response.
My emergency response is to go into into pragmatic mode. We discussed what next? How can we clarify diagnosis and treatment options? What I need to do to find out how long I have left. We looked at my living location relative to cancer hospitals, we discussed who I would call and how I would get home and ensure I was not alone. This is possibly an upside to working in healthcare, I knew what to ask and I was calm. I thanked the GP for his time, double checked that my referral would be sent by the end of the day to get the ball rolling, walked out of the office saying goodbye to the receptionist, stepped outside, picked up my phone and turned into a blubbering mess. It was safe to say, I felt like my entire life had been ripped into tiny confetti-sized pieces and thrown into the wind.
My thoughts ran. It was like that awful high-pitched sound you hear when a microphone feeds back was let loose in my mind. The only thing I could really hear above that high-pitched scream was my heart beat and the “what-if’s” my brain loop had begun. "How long do I have left to live? Is it going to be chemo until I die or can I have moments of healthily life until I die? When will I die? I have low sick leave and a finishing work contract soon, how will I afford food? How will I get up the stairs to eat food when I’m sick on chemo?, How long do I have left to live?, Where will I live if I can’t pay rent?, I’ll lose my sex drive during treatment, I only just started to like my body, I just enrolled to start studying a course, no more travel, no more festivals, how long do I have left to live?”
The prospect of writing a bucket-list was daunting. The prospect I wouldn’t have time to complete it was petrifying.
The next morning I’d met my breast care nurse (my 'booby buddy') who was fighting tooth & nail to get me all of the appointments and scans I needed to confirm my prognosis. It hadn’t even been 24 hours since diagnosis and a team had been assembled, a series of scans & biopsies scheduled and a multidisciplinary team meeting to discuss my case and treatments. The urgency of everyone’s behaviour and the speed I was flying through the medical system was not lost on me. It wasn’t the words ‘possibly terminal’ that made me feel like i’d been hit in the face by a truck, it was the urgency and speed I was flying through the medical system that really hit me hard.
So I did what many would do. I went back to work at the hospital around my appointments and threw myself into healthcare paperwork. With all control of my life taken away from me (not even knowing how much life I had left), I had control over one thing. Completion of the never-ending streams of government, legal, hospital, financial and work forms that continually needed completion and around that, giving my patient caseload at work my full attention.
I have joked with many fellow cancer patients at the hospital when they ask “you’re at the beginning? How are you going?” and my response in my tired voice is “cancer is admin”. They chuckle and acknowledge our mutual new full-time jobs - cancer. Cancer is paperwork, government phone calls, hospital phone calls, hours of hold music each day, diary management, daily appointments some weeks, treatments and symptom management. The administrative hoops to jump through are exhausting and with a possible terminal diagnosis attached to my mind like that face-hugging alien from… 'Alien', it is safe to say that my stress levels erupted and I did anything I could to fill my time. The paperwork was my saviour, my escape, my focus for stress and frustration and somewhere for me to deflect my stress on. Around this, my patients at work gave me purpose, perspective and hope.
The first 4 weeks I felt like a stunned deer riding a rollercoaster. Except the rollercoaster only got faster, the track constantly changed with no warning and the end of the line was possibly very close, but unknown.
Within 28 days post receiving my diagnosis I had had:
Shortly after surgery, test results confirmed I could live a long life with the recommended treatments as the cancer had not spread to my organs or bones. The suggested treatments consisted of the lumpectomy which I had just had, 6 months of chemotherapy, surgery - double/single mastectomy (to be confirmed at a later date), radiotherapy and 5 years of hormone therapy. It was just too much to think about and I barely knew what these treatments entailed. I hadn't worked in oncology, I knew almost nothing around basic study at University. 5 years of treatment put a chill down my spine. 5 years.
Another common and very applicable cancer saying I have heard many times is “it’s a marathon, not a race”. I just needed to focus on the next challenge ahead of me and ignore the 5 year sentence I had just received. “Just focus on the next step” I repeated to myself over and over and over.
Unfortunately the next step was chemo.
I was 36 years old when I heard the words “it seems you have multiple cancers in both breasts and will likely lose both of them”.
I wasn't as shell shocked as I could have been, thankfully events leading up to this day had me slightly thinking about the 'C-word'. I was anticipating bad news. I recalled the Sonographer after my initial ultrasound finished, leaving the room so quickly I was almost tasting the dust cloud they left behind them as they ran. They couldn't even look me in the eye. Then, the day of to get my scan results I had 3 missed calls from the GPs office and two voice-messages from a nurse to “make sure you’re coming in to get your results today”. I knew at that moment it was not a cyst. I of course, could not prepare for hearing the above words being spoken to me.
A following question “is it terminal?”
That one second of silence while the doctor inhaled his breath to speak was the loudest silence I will ever hear. “Possibly” was the response.
My emergency response is to go into into pragmatic mode. We discussed what next? How can we clarify diagnosis and treatment options? What I need to do to find out how long I have left. We looked at my living location relative to cancer hospitals, we discussed who I would call and how I would get home and ensure I was not alone. This is possibly an upside to working in healthcare, I knew what to ask and I was calm. I thanked the GP for his time, double checked that my referral would be sent by the end of the day to get the ball rolling, walked out of the office saying goodbye to the receptionist, stepped outside, picked up my phone and turned into a blubbering mess. It was safe to say, I felt like my entire life had been ripped into tiny confetti-sized pieces and thrown into the wind.
My thoughts ran. It was like that awful high-pitched sound you hear when a microphone feeds back was let loose in my mind. The only thing I could really hear above that high-pitched scream was my heart beat and the “what-if’s” my brain loop had begun. "How long do I have left to live? Is it going to be chemo until I die or can I have moments of healthily life until I die? When will I die? I have low sick leave and a finishing work contract soon, how will I afford food? How will I get up the stairs to eat food when I’m sick on chemo?, How long do I have left to live?, Where will I live if I can’t pay rent?, I’ll lose my sex drive during treatment, I only just started to like my body, I just enrolled to start studying a course, no more travel, no more festivals, how long do I have left to live?”
The prospect of writing a bucket-list was daunting. The prospect I wouldn’t have time to complete it was petrifying.
The next morning I’d met my breast care nurse (my 'booby buddy') who was fighting tooth & nail to get me all of the appointments and scans I needed to confirm my prognosis. It hadn’t even been 24 hours since diagnosis and a team had been assembled, a series of scans & biopsies scheduled and a multidisciplinary team meeting to discuss my case and treatments. The urgency of everyone’s behaviour and the speed I was flying through the medical system was not lost on me. It wasn’t the words ‘possibly terminal’ that made me feel like i’d been hit in the face by a truck, it was the urgency and speed I was flying through the medical system that really hit me hard.
So I did what many would do. I went back to work at the hospital around my appointments and threw myself into healthcare paperwork. With all control of my life taken away from me (not even knowing how much life I had left), I had control over one thing. Completion of the never-ending streams of government, legal, hospital, financial and work forms that continually needed completion and around that, giving my patient caseload at work my full attention.
I have joked with many fellow cancer patients at the hospital when they ask “you’re at the beginning? How are you going?” and my response in my tired voice is “cancer is admin”. They chuckle and acknowledge our mutual new full-time jobs - cancer. Cancer is paperwork, government phone calls, hospital phone calls, hours of hold music each day, diary management, daily appointments some weeks, treatments and symptom management. The administrative hoops to jump through are exhausting and with a possible terminal diagnosis attached to my mind like that face-hugging alien from… 'Alien', it is safe to say that my stress levels erupted and I did anything I could to fill my time. The paperwork was my saviour, my escape, my focus for stress and frustration and somewhere for me to deflect my stress on. Around this, my patients at work gave me purpose, perspective and hope.
The first 4 weeks I felt like a stunned deer riding a rollercoaster. Except the rollercoaster only got faster, the track constantly changed with no warning and the end of the line was possibly very close, but unknown.
Within 28 days post receiving my diagnosis I had had:
- 2 mammograms
- 1 contrast mammogram
- 1 ultrasound
- 11 core biopsies with 3 titanium markers inserted into my breast and 1 axilla needle node sample taken (not an enjoyable few hours)
- 5 blood tests (“just a little prick”)
- 1 contrast CT scan (the ‘space-donut’ I call it)
- 1 bone scan (it was fun going to the 'nuclear' ward of the hospital, no rainbow lasers from my eyeballs as a result sadly)
- 2 contrast MRIs (like listening to a walrus give birth to an evacuation alarm)
- A total of 19 medical appointments
- And 1 surgery - a right breast lumpectomy with 26 lymph nodes removed.
Shortly after surgery, test results confirmed I could live a long life with the recommended treatments as the cancer had not spread to my organs or bones. The suggested treatments consisted of the lumpectomy which I had just had, 6 months of chemotherapy, surgery - double/single mastectomy (to be confirmed at a later date), radiotherapy and 5 years of hormone therapy. It was just too much to think about and I barely knew what these treatments entailed. I hadn't worked in oncology, I knew almost nothing around basic study at University. 5 years of treatment put a chill down my spine. 5 years.
Another common and very applicable cancer saying I have heard many times is “it’s a marathon, not a race”. I just needed to focus on the next challenge ahead of me and ignore the 5 year sentence I had just received. “Just focus on the next step” I repeated to myself over and over and over.
Unfortunately the next step was chemo.
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