Surprise, I’m still alive!
At the moment, most days feel like groundhog day. Days start with the squishing my fluid-filled feet into my sneakers and carrying my sore body to the bathroom so that my bowels have their “last hurrah” before being temporarily silenced by several little pills. It takes me the better of 5 minutes to change out of my pjs and about another 15 to re-change to find an outfit that is comfortable enough without making me feel like the only thing I wear is trackpants and mums’ tops (they are so much thicker/warmer than my own). After that, it’s usually more pills, followed by gym, a post-gym pre-breakfast nap, a bowl of cut up fruit salad and re-packing for hospice. Sometimes I shower at home and other times I save it for when I return, only to regret my decision when standing under the piss weak shower pressure and negotiating space in the bathroom around the never-used shower chair. Late morning is usually an appointment with a palliative care doctor and/or the physio (who talks too much but tries to massage in between telling me about my aura). Then it’s lunch time and most of what follows that is determined by the number of visitors, my level of pain and/or nausea and my natural energy levels. Usually, it’s anything from art to writing, to making arrangements for my funeral and will. By 4pm, I hit a slump and try to have a lie-down before pensioner-time dinner is delivered around 5:15/5:30; then settle in for my nights of discomfort.
I’ve noticed the small things getting harder. I’m slower at walking now, and naturally find it difficult to bend at my ankles to get up stairs. I also now find my body is less inclined to do any unessential movements, and I’ve become bossier on the tasks I’ve ordered my family to do for me. My responses have shifted from “I’ll do it” to “Can you get me…” in what seems overnight, and I feel helpless against my weary body that has decided for itself that it needs more help than my ego likes to admit.
Despite my dwindling energy, pregnant-feeling belly, swollen pelvis, nausea and pain, I’ve given my best effort to still engaging in some pleasurable memory-making activities with my family and friends. Last weekend, Sunday was dads’ birthday and Fathers day, and the hospice volunteer coordinator was kind enough to help me organise a special day for us. It took a lot of calling around and Facebook stalking to find some decent Asian restaurants (dads’ favourite cuisine) that were open for lunch, had availability for fathers day, and had a menu that was more than just the generic fried rice and spring rolls. We eventually found Sunny’s Shop & Mr Chans in Prospect, where we were able to get an expensive hospice-sponsored meal for the six of us (Nadia and Aunty Lou joined). So naturally, dad ordered himself a feast, everyone enjoyed the free alcohol, and my half-dead taste buds were dancing over to the flavours of some new foods.
In the second half of the afternoon, everyone was ready for an afternoon nap to sleep off their food coma. However, I’d already organised the second half of our day out. Dad seemed excited when we pulled up for the zoo, and the enthusiasm rolled on through the afternoon. The hospice arranged a private animal meet and greet experience where we met a very well-trained galah, baby possum and quokka. While I’d rather have personally fed some lions, I genuinely smiled trying to get a selfie with the quokka that seemed like it was smiling just for us (and it might have been, given we were feeding it some very delicious raw corn). Begrudgingly, I even agreed to photos of my disgusting face just to capture the moment:
We also got free zoo entry at the same time, where we were lucky enough to actually see Wang Wang and Funi amongst a range of other animals. The air was fresh, but the sun was out and the family atmosphere was there. Honestly, the mood couldn’t have been much better; and there was nothing worth more to me than seeing the smiles on the faces of my family. Like nothing more sinister was going on; as if nothing had changed. Returning to hospice that Sunday night, I wished to die. Not because I was in terrible pain, but because I wasn’t. I had genuinely had an excellent day, felt more ‘myself’ than I had in a long time, and wanted my last memories of my family uplifting and heart-warming. However, we don’t always get what we wish for, and a week on, I’m still here. Heart still beating, abdomen still filling, legs still pooling. But still here.
Which meant I had to try to carry my positivity and ~good vibes~ through to this week. To quickly summarise – I’ve had two more guests from Brisbane visit on Monday and Tuesday, an absolute write-off day where I was bedridden, followed by days of some small wins. On Friday, I was able to catch up with my godmother and godsisters for a manicure, and went totally “out there” with the design (for someone who only gets neutral or dark colours. It makes me feel a bit crazy when I look down at them, but hey; my body might get sick of me before I get sick of them?
I also managed to see one of my best friends and my cousin – albeit suffered horrible pain at the time – in addition to finalising some death admin.
And while this weekend may not have anything as exciting planned, I scheduled a 2-hour oncology massage yesterday and gave my body what is needed and deserved – a rest. I limped out of the massage feeling relaxed and at peace. Sure, I won’t underestimate the power of morphine in aiding my relaxation; but I will give full credit to my newfound mental clarity to the power of an effective massage. While I’m taking it day by day (ew, cliché), I realise that not much matters in the larger scheme of things. The small moments make and break my days, and the people add or detract from the experience of living. Dying or not, that’s the same for us all. So do the small things that make you happy and surround yourself with people who make you genuinely smile – that ugly, jaw-pinching, eye-squinting smile. Or the smile you secretly make to yourself over a big plate of Pad Thai while trying to ignore the camera phone.