The morning of the results appointment finally arrived. It was my youngest daughter’s first birthday too. Luckily my cousin was still there to inflate our spirits. We all sat on the couch and helped Eliana to open her presents.
My daughter with her birthday presents
Still I couldn’t help mentally rolling my eyes and saying to myself, “What a fabulous way to celebrate my daughter’s first birthday. Let’s go and find out if I have a brain tumour, lung cancer or something else.” 🙂
The moods in the grey waiting room had become very familiar. Some people were obviously upset waiting for diagnoses and others seemed relaxed. Some seeing my distress, smiled at me with very genuine kindness and sympathy in their eyes. I imagine they had been through something similar. This helped a lot as it gave hope. The kids were being cared for by my cousin and my husband was with me. (I wasn’t yet at the stage where I could go by myself for diagnostic medical appointments)
After an hour or so waiting it was our turn to see the doctor. He welcomed us kindly and gave us the news that he still didn’t know where the primary was located. They had been able to confirm again that it was not melanoma, but pathologically all the other origins were still possible, e.g. breast, lung, head and neck, oesophagus, or reproductive system. This was most certainly not what I wanted to hear – the five-year survival rate for ‘cancer of unknown origin’ was only five percent!
The doctor ordered a PET scan and various other tests. For the next 6 or 8 weeks I was fronting up for scary results twice a week. More than half of my time was spent in doctors’ rooms waiting to undergo medical tests or for the results. All my spare time was going into researching alternative cancer treatments seeing counsellors and alternative health practitioners. My life had been changed completely and felt very temporary and bleak.
During this interminable process to find the primary, two events in particular, stand out as being particularly stressful.
Woman undergoing a PET scan
First Oncology Visit
Taking the lift to the Oncology Department for the first time was very depressing. In the past when visiting the hospital, I had always looked on those people pressing the button to ‘Level 6’ with sympathy and had felt thankful to be going elsewhere.
On Level 6, the lift doors opened to an old and grey windowless waiting clinic that was a little cramped. I met a variety of oncologists in my time there. Some of them were lovely and some were less so. First up was an assessment by Radiology Oncology.
The tactful doctor read my history quietly. Leaning back in his chair he smiled and looked me in the eye and said slowly, “I’ll bet you’ve got lung cancer”. His words haunted me for some time…
The PET scan had found some areas of high activity in my stomach, so I was sent for an endoscopy. During an endoscopy a gastroenterologist puts a camera down your mouth and looks at your oesophagus (swallowing tube), stomach, and duodenum (first portion of small bowel). It is done while you are asleep under a short acting anaesthetic.
Afterwards, there were half a dozen of us in the recovery room, sitting around chatting, waiting for results eating sandwiches and drinking tea. I was almost getting used to these tests now and hadn’t had any bad results for a while, so I wasn’t really worried. Looking round the room made me feel even better as I seemed to be the leanest and healthiest of the bunch :-).
There wasn’t much privacy. The doctor was taking patients behind a curtain to talk about his findings. We could all hear the conversations well. One by one people, some of whom looked to be on ‘death’s door’, were coming out cleared of any really worrying diseases.
My turn was last. The doctor had taken a biopsy of inflamed tissue from the top of my stomach He said he was pretty sure it was cancer. He had seen it many times before. If it was cancer, it wasn’t going to be easy to operate on. There ensued another agonising week while the pathology tests were done.
To my complete surprise the pathology tests came back with ‘inflammation’ and ‘no malignancy’. Phew… what a relief. All this anxiety about ‘nothing’ has now taught me not to worry at all about test results, at least before I receive them, but that mentality certainly didn’t happen overnight.
It is very important for a patient’s mental health that doctor’s are optimistic with them. Thankfully most of them were.