Well, I’ve been through something huge, and I need to talk about it. Back story: two years ago it was discovered I had a meningioma, but it wasn’t causing any problems. Fast forward to the beginning of this year, and it was starting to cause trouble.
A routine check up MRI discovered the benign tumour was growing, and causing swelling of the brain around it. I started to be symptomatic and began to get increasingly delibitating headaches and nausea. I had a seizure. The neurosurgeons let me know that the tumour was almost definitely causing these things, and it was time to have surgery as if we didn’t act things would just get worse and the operation riskier. It was flagged as a catagory one which meant it was to happen within 30 days and I was scheduled a “pre admission appointment” to meet the anaesthetist and go through questions I had and plans for the hours long surgery. I, somewhat superficially, wanted to know how much hair I was going to lose. Different doctors said different things and in the end the incision was far larger than I was led to believe.
I never made it to the pre admission appointment. I had to present to Logan Hospital ED for eating disorder complications, and once I was admitted and was suffering from the tumour related symptoms, the doctors ran with contacting my neorosurgeons at the RBWH and they decided they wanted me there and I was transferred the next day to the neurosurgery ward. I spent only a couple of days on NG feeds to make sure I was ready for the surgery, then bang, it was to go ahead. I was scared and was really regretting signing the consent form, but the prospect of getting rid of the symptoms, and the support from my family who supported the decision to go ahead, made things fairly easy.
My brother and my Dad were by my bedside by 7AM on the 10th of May, surgeries were set to start at 7:30AM and I was first up. There were a few things that were going to happen that I wasn’t very comfortable with but I was going to be under so I didn’t really have to worry. The last thing I remember is the anaesthetist talking to me, then next thing I know I’m back in my room on the ward, with a drain in my head, and my brother and Dad next to me. Dad tells me I was struggling in recovery and they were called down (not a common thing to happen) to help reorient me but I can’t remember this, at all. Apparently when I saw them I was okay.
I was on feeds for the recovery portion of my hospital stay as well. I didn’t cope very well with this but psych were very good with me, and I was just on the feeds for pre and post surgery, to make sure I was strong enough to deal with a major surgery. So I tried my best to be compliant. Anyway as soon as I woke I was eager to get out and recover at home. So two days post, my drain was removed, we were given wound care and instructions, and my consultant Dr Patrick Pearce gave Dad the all clear to take me home. I am very appreciative of him and the other neurosurgeons and the staff on 8A south, They were very good with dealing with everything on top of me struggling mentally.
Yesterday marks two weeks since the surgery, and after initially experiencing post op headaches and wound pain, I’m getting better slowly but surely. I’m keeping up the pain relief and have a steady rotation of beanies and hats, because I’m still quite swollen and missing a chunk of hair. Initially my left hand side was weak but it too has improved to full functionality. For about 10 days I was to keep dressings on the wound, which I thank my sister in law for helping me with! Now it is dressing free and healing nicely. My hair is going to take awhile to grow back but I’m prepared for that.
On top of all of this, I have been struggling mentally. Not being able to exercise really got me down and I know I’m still not ready to step back into that, so I try to fill my hours in other ways. Watching things with my Dad has been a big distraction. My eating disorder has of course taken an oppurtunity to become a problem, and I got starvation syndrome again, so on my own terms and with my dietitians support I have started to have a little oral supplements, something I could never, ever manage in the past and something I still find really difficult but with the support of my family I’m sort of managing. This doesn’t mean I’m not engaging in compensatory behaviours because of the guilt but I do sort of acknowledge something I haven’t before: I need more than coffee and energy drinks.
I’m going to finish up here, but if you’re reading this and you have supported me silently or simply with a heart emoji out of the blue, thank you. Thank you to my main supports Dad, Brad and Amy. Thanks for the cuddles Calvin, especially this morning! I could not be on this journey without you. And thank you to my Sydney friends for coming up, I enjoyed every moment.