CSF mets

I’ve been MIA for a little while. This might sound silly, but Mum’s results had all been okay – stable – and her oncologist started using the word ‘chronic’ rather than ‘terminal’. She got more metastases to the chest wall but they got under control quickly. We all got our hopes up. She bought warm clothes to go to Minnesota at Christmas to see my brother, we started planning some things for next year. We all were quite determined to be cancer-less for a little while.

Still, even though things were looking positive, Mum had radiation fibrosis to deal with, was still going to chemo for the chest wall mets, was still not feeling "good". She wasn't eating. It was confusing when the doctors kept telling us things were good, when we could SEE they weren't good. 

Then a headache turned into a week-long migraine, turned into a GP home visit, turned into two emergency trips, turned into a spinal tap, turned into CSF mets, turned into intrathecal chemo. She's had two cycles. They're going to do a couple more and then see if its working. The oncologist isn't confident.

The prognosis is not good at all. Heart breaking.

My poor mum. And poor me, too. She's my Mum!

Many hugs, many tears, many hard conversations ensued. A lot of love.

I'm moving back home to be with her for however long she has left, which we're told isn't long. Maybe til Christmas. I'm in the process of breaking lease, packing my apartment, dealing with Centrelink to see if I can qualify for Carers Payment. So much to do. And then what?!

I also somehow turned into the family spokesperson, something my psychologist says can be an inevitable consequence of competance. Regardless, it bothered me. There I was at the hospital, using every resource I had available to me just to get through it, and I was getting a million well-meaning messages wanting personal updates, new information, can I visit, when can I visit, how is she now, what's happening next etc etc. Maybe it was misdirected but I felt really angry. I felt like saying Go away! Can't you see I'm her daughter?! Can't you see this is happening to me, too? Don't you understand that responding to you is the very last thing on my list of priorities?!

An unexpected family member ignored our repeated requests for no visitors and showed up in floods of tears. I found myself in the hallway with her stopping her from going in the room, knowing my mum was panicked inside about the imminent intrusion, and the family member was out of control distraught. She's not a close family member. So me, the distraught daughter who was outwardly composed and inwardly heartbroken, was meant to comfort the distant, selfish relative who was emotionally out of control? Outside my mum's hospital room which she was asked not to visit?

I have come up with a solution to ensure I don't snap at a well-meaning but ultimately misguided relative/friend/nosy acquaintance on a bad day: a global email to which people can subscribe and I can send with information my Mum wants shared at times that suit us.

There aren't words for where we find ourselves at the moment. It's surreal. Mum bounces between being peaceful and depressed, calm and distraught. Dad is running on the smell of an oily rag - he's so burnt out - and my brothers and I are all coping in different ways. It feels very lonely. Never have we closed ranks more than this. Never have we only wanted each other like we do right now. I know how lucky I am to have a family to share this with and lean on and have lean on me. Not everyone is blessed to have that.

My heart is so sad. There are so many big moments I know I will desperately miss her - my wedding, the birth of my children, when I'm feeling awfully alone. But I know it will be the small moments that get me. The everyday stuff. The get in the car and call Mum habit I have. The way she treats me like the Birthday Girl every year. How when I have a fight with my partner, she won't be there to  take my side (even when she disagrees with me!) or vent to. Sometimes the only thing in the world that can help is your Mum. She's my person. And I am just so sad about having to live in a world without her.

We are planning lovely things for the next few months. Conversations. Organising photos. Teaching Dad how to pay bills online. Sharing stories of her jewellery and what pieces she wants to go to my brothers. Lots of lattes/iced coffees. Lots of time sitting on the veranda just talking. I am grateful, grateful, grateful for this time and I know I will treasure it. But goodness it's hard!