20
May
2019

Joanne P's bowel cancer story (diagnosed at 37, NSW)

With symptoms including blood and blood clots in my stool, fatigue, nausea, light jaundice and abdominal pain, I visited the emergency room in August 2018 and had to wait for nearly 7 hours. I was turned away.

Five months later, I was diagnosed with bowel cancer. I was denied knowing whether my now terminal cancer could have been treated at an earlier stage, if I would have less tumours and could have had a longer, better quality of life.

In September 2018, my GP put me on a waiting list for a consultation that didn’t eventuate until November. At that time, no observations or inspections were completed even though I asked if my rectum should be checked, if I should take a poo test, or if the doctor wanted to see photos I had taken revealing the blood in my stool.

The doctor said he thought it was internal haemorrhoids or blocked up faeces – and sent me away with a faecal loading/constipation management plan. I was put on a 30-day waiting list for a colonoscopy.

After waiting 30 days to be contacted by administration but never receiving a call or letter, I contacted administration directly in December 2018. I was told there were people before me and that I would have to wait at least another two months from the time I was calling. 

I started to feel pain in my upper right side around my liver area on the 14th of January 2019, as well as still having all my other symptoms. I went to see another doctor and a different medical centre on the 15th of January.

The doctor asked the history of my symptoms did standard observations and asked me to get in touch with the hospital again to see when the colonoscopy would occur. The doctor also requested a full blood test and asked me to return on the 16th of January to find out the results.

I had the blood tests done and made the call and was told it would be a further two months before I would be seen for the colonoscopy.

When I returned to see the doctor about the blood test, the results showed that my liver function had abnormalities.

My doctor requested another full blood test and an ultrasound on my liver, and I was told to return again the next day for the results. The ultrasound revealed lesions and what appeared to be cysts on my liver, so a CT scan was requested.

I was told to follow up about the results the following day, 18th January, because the doctor wanted to speak to the hospital before I went in for my laparoscopy which I had already booked for the 21st of January. I had booked the laparoscopy before developing bowel and abdominal symptoms, due to a diagnosis of polycystic ovary syndrome and endometriosis which I received in December 2016. At that time, I was put on an 18 month waiting lists.

I had the laparoscopy on the 21st, and two days later received a call letting me know an opening had come up for a colonoscopy. I told the woman on the phone I had just had a laparoscopy and wanted to be sure it was okay to have another surgery in the same week. The woman on the phone said she would check and let me know. The next day I received a call and was told I would receive a call the following week to reschedule.

I then went back to my GP to find out the results of the CT scan and was told the medical issue with the liver was serious and was given a form requesting an emergency MRI of the liver which was booked on the 31st of January.

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My pain continued over the following days, but I was not sure if this was due to the laparoscopy surgery or something else. By the evening of the 28th of January, and the following morning, the pain around the liver area had become so unbearable I went to ER at the hospital. When I arrived, I explained that there had been an ongoing investigation regarding my liver and handed over the form requesting an urgent MRI, which contained clinical information on what the MRI was to investigate.

The MRI was to provide the doctors with more information about what was happening medically. I also told them about the blood tests I had on the 15th and 16th of January and mentioned the ultrasound and CT scan, but the workers in the triage area didn’t know anything about the medical centre I had been to. My partner said he would Google it for them to see, but they said they would find out. 

I was in extreme pain and really needed pain relief, but I was unsure if it was safe to take anything given the results of the liver reports. The triage nurse again asked me why I thought I had something wrong with my liver, so I again showed her the paperwork from my doctor calling for an urgent MRI.

I waited for hours in extreme pain, with no pain relief. The nurses didn’t come to check in on me or let me know what was happening. When I finally was given a bed in the ER, I was asked by staff if the reason I had come to ER was to get the MRI, because if it was then they couldn’t help me.

I explained that it wasn’t the reason why I had come and that it was the pain from my liver that had brought me in, but the MRI referral paper had been given to me and I had brought it in to help them to know what was happening since it had been a recent diagnosis.

The next doctor that came to see me asked to see the CT results and imaging and asked for my partner to drive to the clinic to get the images so that she could investigate further. I was attended to by another worker who sad down next to my bed and asked me why I was in the ER and what my symptoms were.

After telling him my symptoms, he asked to investigate with his finger. He found no blood and believed that since I wasn’t showing signs of extreme pain on my face, and that I was able to lay on my side, I wouldn’t need any pain relief.

This worker left and a surgeon came. He also conducted an anal exam and found no blood or stool. I was then told there would be an x-ray taken of my lungs but that everything looked normal. They also thought I was well enough to be discharged. I was annoyed and explained I was experiencing extreme pain in the liver and wanted to know why nothing had been done.

A short time later I was wheeled to x-ray and had my chest x-rayed. I was then wheeled back to my area in the ED. My partner returned with the CT and ultrasound imagining. I was told by the doctor that the report stated tumours were found and the doctor said she wanted to keep me overnight so that I could have a colonoscopy/gastroscopy in the morning. One of the hospital workers said he would take the CT imaging disc my partner had obtained for them to view to help with what was happening and to see if the information would help with the colonoscopy/gastroscopy.

The next morning, I had the colonoscopy/gastroscopy and was told in the recovery room that I had cancer.

Later in the day the worker came to see me in my bed and said that the results were bad and that the PET scan had been organised.

I continued with my care and pain relief during my stay in the ward and on the 31st of January 2019, the same worker came back to my bed in the ward and explained the PET scan confirmed that I had inoperable, incurable stage 4 bowel cancer that had metastasised to the liver.

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