The impossible task

I’ve never bothered to have a physical bucket list. I always thought that if I wanted to do something badly enough I wouldn’t forget it. However certain life choices I’ve made have meant that I haven’t yet done any of them.

I went straight to uni after school instead of working to save for an OE. Then I figured I’d do my OE in my early 20s, after I’d finished uni. Except I never actually finished uni and fell for Greg. He came with a gorgeous daughter – so living and working overseas for a few years was no longer an option. That’s totally fine I thought, I’ll do the raising of the kids, and then do a fancy OE when I’m older. I’ll be able to do more, afford more. I’ll have decades to compile the mental list of places I want to go and landscapes I want to see.

When I started writing down a bucket list on Saturday morning, the stage of shock and denial unfortunately disappeared with suddenness. Should I only write down the things I know I can do realistically? What about the things that I’m fairly certain I’m not going to be able to do but have wanted to since I was a teenager? Do I write those down too? Because at the end of the day, I’m unwilling to miss out on time with the girls just to save enough to see the world I want to see.

How do you prioritise things you thought you’d have a lifetime to do? The New Zealand things we can do. I adore New Zealand and I’m going to share that with the girls. I want to see all of New Zealand with them. I wonder if they will be able to visit those places after I’m gone and remember me, and the time we spent together exploring. The extensive international travel I was planning on when I was older and the kids were grown – I suddenly realised on Saturday morning that it probably won’t happen. Some of it – maybe. I’ve always known I want to see the Northern Lights before I die. I want to see Norway, Sweden, Iceland. I want to visit Scotland and Ireland. I’d love to see Stone Henge. I want to see places so rich in cultural history I can’t comprehend it. I want to see the Grand Canyon and Yellowstone. I want to spend months and months travelling around the Mediterranean. The Himalayas, the Great Barrier Reef, Machu Picchu and Thailand.

I wanted to go back to study… but is there any point? What if I actually do live a long life and I COULD have studied and got a great job after it. I still don’t know what I want to be when I grow up. I know I want to help people, and have a positive impact on the world in some small way. I just don’t know how to do that yet.

On a more immediate note, do I start a habit of watching the sunrise? Perhaps I need to get into meditation to help with the ability to stay in the moment. Or perhaps I need to become a tea drinker rather than coffee addict. I feel an intense pressure to be better, to do better. I don’t want the kids to remember me as a cranky, grumpy mum. I feel like it’s my last chance now to be the person I’ve wanted to be. Someone Greg and the girls can be proud of in years to come. I just don’t know if I’m up to the task.

Cancer. Stage 4.

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.

Into the unknown.

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.