So, I’m conscious my last post was pretty heavy. And I’ve not updated since then. But I wanted to wait until the zaps were finished and we had a better idea of what happens next before posting again. So here’s the update.
I saw the lovely Max again today (no mum, I can’t bring him home, sorry!) but he’s happy with my progress during radiation and suggests there’s no need to do the brain drain surgery (although we can keep that in the back pocket as an option if things change later). I’ve now had 5 zaps on my whole brain – this is to target the big f***er we saw last week, and some other nasty little lurkers we know are there – in the hope that it’ll buy me some more time until things get tough again (during which I can get back home to my family, and enjoy that time without being in hospital having or recovering from surgery).
And despite the restrictions the world is currently facing, I’m feeling optimistic that I can still do that.
It’s been tough over the past week or so, not knowing whether the radiation would hit me during treatment (but luckily all I’ve experienced so far has been a bit of fatigue and a dull headache behind the eyes – no nausea, no, debilitation, no nasty headaches…) some of that’s due to the meds I’m taking to keep the swelling under control (dexamethasone) and the painkillers to keep any pain under control). But the radiologist said today, that I can try reducing the dexamethasone and see how I get on, then up it again if things get worse, so that’s a good sign. He’s happy with my progress during radiation and the lack of side effects soo far (I may still get tired in the next week or two, and my crazy hair is apparently all going to drop out again, but hey). Given where I was two weeks ago (like on the verge of a coma at any second), II feel incredibly lucky to be feeling like I do now – I’m up and about every day, sleeping well (getting 4-6 hours a night, restful sleep), feeling bright when I get up, enjoying the sunshine every day (the weather here in Amsterdam is just stunning at the moment) and still able to get out and walk around the canals with dad every day, which is just glorious (especially while the city is empty of tourists!)
Because of the circumstances, I’m having lots of very honest conversations with people right now too. Saying stuff which, usually, people would think is soft, emotional, or sad. But I’m actually loving it – reminiscing over memories, remembering stuff from years ago, catching up with people I’ve not spoken to in yonks… not because they think I’m about to die, but because we just feel comfortable enough to say things without any ulterior motive, just focusing on the nice memories, rather than focusing on what the future may or may not bring. It’s incredibly heartening, uplifting and positive, and I’m smiling for the vast majority of every day.
I’m loving doing stuff in Amsterdam which may not feel like much, but it’s the little things people take for granted – sitting on a bench with an ice cream in the sun (without feeling guilty about piling on sugar), chatting with the florist in the market, banter with the nurses in the hospital, just saying hello , thank you and goodbye to the guards on the door at the hospital going in and out… just day-to-day stuff which people overlook but which put a smile on your face.
The next chapter
I’m moving back home, yes. And I am going to miss my place, my freedom and the luxury I feel privileged to have created in my home here in Amsterdam. But I’m not focusing on the goodbye, or what I won’t have now. I’m grabbing the opportunity to enjoy it while I can. And when I get home, things will be different. I know that. But that will be the next chapter. I’ll never lose what I’ve built up here, I’ll never lose the memories, I’ll never lose the friends, and I feel truly blessed to have had the opportunity to create all that and enjoy it over the past 5 years. The next chapter could be long or short, but that’s the same for everyone. I just have the benefit of perspective now, where I have the luxury of being able to put aside the worry, frustration, anticipation, planning, fear, stress or concern of not knowing what tomorrow will bring. Tomorrow for me is a bonus. And despite having said I’ve lived my life thinking that for the past 22 years, for the first time I actually feel like I’m doing it. I can’t imagine many people could actually have the freedom to do that, as they have others to consider, jobs to think about, bills to pay, holidays to plan, kids to home school, businesses to run, careers to forge…
Tomorrow I have a CT scan so I can leave here will the latest medical picture of my condition. I’ll get the results of that on Monday. Assuming there are no side effects by then, I’ll be able to come home. I’m stocked up on meds, dad has a flexible ferry ticket booked ready for us to use when we’re ready to leave, and in the meantime, we’re just enjoying the sunshine, living a very relaxed pace, and slowly clearing out my apartment.
I’ve had heaps of messages from people wishing me well and checking in on how I’m doing – all of which is as always wonderful. I’m trying to come back to as many of you as I can but bear with me!
Stay well, stay happy
These are tough times for everyone, not just me. And while it’s easy for me to sit here and write about how bizarrely stress-free I actually feel right now, I know that’s not how everyone else is currently feeling. So just because I’m in my own little bubble, I’m very much still here; for a catch-up, a rant, an ear, a shoulder, a glass of whatever, a Zoom, FaceTime, WhatsApp… just focus on the good stuff peeps… it’s the best tonic I’ve had in years, truly.
Big big love