+100 days: Back from the brink

What an insane few weeks it's been. I am +100 days today, and this week is the week I should in theory be having +100 day tests like a bone marrow aspiration, loads of blood tests, Hickman line removal , lung function test and dental check up. The lung function test did actually occur this week, plus the removal of stitches from where the Hickman had to be cut out. It was definitely back to reality with a thud after 4 incredible nights  away in the South island. Everything else has already happened, frantically rearranged appointments to accommodate the bone marrow biopsy being brought forward by 3 weeks. 

Having it all done early obviously meant less waiting which is a great thing. I just wish I'd had more notice than 1 day to emotionally prepare! Whatever that means. It was due to the fact that I need sedating for it, which they only had space for that next day. Blunt delivery, but hey unsurprising coming from a Dr right? It for sure gave me less time to freak out and get my anxious Annie on. Pro’s and cons for both I guess. It did mean I got to go on holiday without a line sticking out of my chest, and go in the hot pools in hanmer springs which was amazing. Having had a line since April, that small sense of freedom? Priceless. Was the removal awful? You bet it was. Probably not making much sense here, I guess because I'm still sorting through what's happened in the last few weeks. Waiting for the world to stop spinning on its head. 

Mum and I got to go away with the (preliminary) knowledge that my biopsy results were fine, and once we got back, even better news. My CNS (clinical nurse specialist) rang 2 nights ago to confirm the results; Hans has officially taken over. Complete remission she said. 100% donor marrow observed! 

I wish this meant it was over, that things can back to normal. I wish I didn't need a blood test next week, or more bone marrow clinic appointments with the specialists and 5 more years of monitoring. I wish my liver would sort itself out so I can stop taking immune suppressant drugs, and that my lungs hadn't taken such a big hit. I wish I hadn't woke up this morning feeling as though I’d been hit by a bus, or that I found it so difficult to leave the house yesterday. I appreciate it's going to take me a while to put the stuffing back in, I've just got to take each day as it comes and remember to allow myself grieving time too. I still can't believe it worked; a part of me thought I wouldn't see this end of the process and when I stop and think of the enormity of it all, I can't catch my breath. I would never say I was lucky, but I'm sure as shit grateful to that generous German out there – my perfect match.

Kristin PatersonComment