There’s some things you can’t ever expect. Some things that make you feel like you’ve fallen down a rabbit hole and you’re living someone else’s life. I remember that feeling hitting me a few hours after Mackenzie died. Late at night, carrying her wee body into the mortuary in the hospital, as I felt my legs threaten to buckle beneath me, unable to put one foot in front of the other I felt like I must have been transported to a parallel universe and was living someone else’s life. This happens to other people. It never happens to you.
I’ve felt similar feelings of disbelief and denial since Friday. I told the nurses in the hospital after surgery that I thought that after Mackenzie died, I should have been set up for an easy life. I’d had my shitty luck – now I was deserving of an easy run. The thought of something like cancer affecting me in the near future just didn’t seem possible. Let alone stage 4.
I don’t like uncertainty or unknowns. Now it seems I’ve got no option but to confront that in a most immediate fashion. My prognosis is uncertain. Is it 5, 10, 15 years? There’s a chance it doesn’t come back with treatment. I had discussion with my gynaecological oncologist and was advised to try and make the most of my time. The name I chose for my Instagram – joy in the small things – suddenly takes on an even more immediate meaning. I originally meant it as trying to enjoy the simple, small moments with the girls after Mackenzie passed. Now, it’s even more important.
For now, I’m being referred to a medical oncologist, a psychologist, an endocrinologist, a dietician. I’m going to start making lists and time lines of things I want to do. I’m going to do them soon, instead of ‘someday’. I wanted to study again, but now – is there any point? I’m lucky that this isn’t definitely terminal.
Now to try and figure out how to maximise the now, while planning for an uncertain future.
I found a lump in February this year. It was a bit weird – and I figured it was a hernia. It wasn’t hurting so I ignored it. A few weeks later it was still there. A couple of months later it was still there and starting to hurt a little. I mentioned it to my mum and a few friends and thought I should be responsible and go to the GP to get it checked out.
In early June, I got an ultrasound. It wasn’t a hernia – but it was inconclusive what it was – malignancy, desmoid tumour or endometriosis. The reason it was getting uncomfortable was that it was growing within my abdominal muscle. I was then referred to orthopaedics (don’t ask me – I was super confused about that one!), and an MRI was ordered and completed late June. Conclusion was that it was most likely a Desmoid tumour, but soft tissue sarcoma was not excluded. Endometrioma was unlikely.
There was now a few months wait to see someone in Orthopaedics. When I did in August, I was informed that it was a Desmoid tumour. The usual procedure with those was to watch and wait. Being the late night google queen that I am – I thought a biopsy was required to diagnose a Desmoid tumour. So I questioned… and then got referred for a biopsy – with another appointment in 8 weeks, unless something unexpected showed up.
My biopsy was on September 2nd, and the following Friday my biopsy results were back – and they were not as expected.
My lump was now a ‘low grade serous neoplasm’. The google search results for that brought up page after page on ovarian cancer. Not all all what was expected.
It was a somewhat sleepless weekend, and honestly a few months since. I was referred away from Orthopaedics to a Gynaecological Oncologist. I had a CT scan – to see ‘where else it is’. I got a call to say my chest and abdomen were clear, but I had a ‘busy pelvis’. I never knew how easy it was to obsess over wording used by health professionals. What on earth could a ‘busy pelvis’ mean? I thought it meant I was riddled with tumours. Others thought the imaging may just not have been clear enough to see. Apparently I’m hard to get a CT on, so I then needed another MRI, this time of my whole pelvis to get a clearer picture.
All that time, I wasn’t really sure what to tell people. It wasn’t actually officially cancer. The biopsy was inconclusive. It may have been borderline, or it may be carcinoma. I really struggle with the unknown.
Regardless of whether it was borderline or carcinoma, the first step of treatment was the same – surgery to remove any problematic growths. Surgery was booked for November 8th – midline incision with removal of both ovaries, both Fallopian tubes, uterus, cervix, the lump I found in my abdominal wall and anything else necessary. I was marked up for a stoma before surgery as I may have needed a colostomy bag due to possible bowel involvement.
I was told surgery would be a big deal. I didn’t really understand how big. I thought the incision would be from my c-section scar to my belly button. It went below my c-section scar to the bottom of my sternum, and took 3.5 hours. I ended up having a chunk of bowel removed, diseased cells off my bladder, and diseased cells above my liver by my diaphragm were burnt off. Every centimetre of bowel, every organ in my abdomen and pelvis were checked.
I woke up with a catheter – it had to stay in 10 days as my bladder was damaged in surgery. I couldn’t move my head, cough, or even talk loudly without pain. If I slept for an hour, I had to stay away for another hour to get back on top of my pain meds enough to go back to sleep. On day one, standing for 2 seconds felt like I’d run a marathon, and it hurt like hell. By day 3, I was off the analgesia, and by the evening I was in so much pain I couldn’t cope. But it hurt even more to cry. The next 4 days were lost to a haze of morphine, which made me nauseous, drowsy, and dopey – and didn’t control the pain. Finally, on Monday a week after surgery I was on medications that controlled the pain without the side effects. I even managed to eat for the first time in a week. On Tuesday, I got to go home. The whole time in hospital, I couldn’t see my girls. Visitors under 16 were not allowed on the ward in alert level 2.
I had an appointment for Friday – 11 days post op – to go back in, check my bladder had healed and get my catheter out. This was the first appointment I’d gone to alone in a long time. It seemed unnecessary for anyone else to be there as it was going to take about 5 hours with a lot of waiting around.
It turns out my pathology results were back. I put Greg on speaker and we found out that I have low grade serous ovarian cancer. After Greg hung up, I asked if they knew what stage. It’s stage 4.
Joy in the Small Things 