Day +21 – Monday
Excuse the Top Gun reference but that’s the music running through my head as I leave the Peter Mac today having seen Professor Constantine Tam, the doctor who I’ve spent the past 9 years on this quite extraordinary journey. He told me at Day +21 I’m out of the Danger Zone – I had just enough Cytokine Release Syndrome for the CAR-T to be now hard at work and he laughed about my lack of neurotoxicity because he said he could tell I was the patient who actually had her baseline improve over the past 3 weeks. Maybe the blog has helped stave that off but, given other than dying, neurotoxicity was my biggest fear it’s good to hear that I’m out of the woods.
I also managed to get Carly, my trials nurse, to agree to a photo with Con and I – she’s been amazing. As I always tell patients considering trials the level of care and attention you get is second to none and Carly is one of my favourites (along with Sam and Martina at Barts!). This is actually my first photo with Con as my doctor rather than an interviewee. I’m looking forward to us returning to the latter in the not too distant future.
Speaking of music – Natasha was singing along to the words from Frozen over the weekend and said after she sang “a Kingdom of isolation” – wow that’s our reality isn’t it Mum? We’re still in lockdown here in Melbourne – it’s like everyone’s a cancer patient now, we have fines for non mask compliance and nothing other than essential retail open. The overnight curfew has been lifted but we’re still restricted to our 5km bubbles with no guests allowed at home. So the kids and I marked Light the Night on our own on Saturday, 2 years after we had the honour of being ambassadors for the Leukaemia Federation at Melbourne’s Federation Square.
We found the whole experience of Light the Night very humbling. Seeing all these families holding Gold Lanterns marking those they’ve lost really choked us all up. Flash forward two years and my kids are really happy – their Dad Robert is doing an amazing job under difficult circumstances and their school has been very supportive too. I’ve only been able to spend 2 and a half days with them in the past 3 weeks and as much as I loved the weekend I’ve just had, it really took it out of me. I’m still neutropenic (at 0.9) and my lymphocytes are back in their normal range of 1.0.
Con said he would be very surprised if they find anything in my bone marrow next week and told me to relax and enjoy the ride! I can’t get my hopes up. I’ve been dealing with CLL and its trickiness for almost 9 years so I won’t count my chickens before they hatch (actually wrote won’t count my horses and realised that didn’t sound right – maybe the old brain isn’t that good after all).
Oh and speaking of which check out my new CAR-T bracelet – from medic alert – makes me feel a lot safer should I have a fall or be on my own and paramedics are needed.
Meanwhile on the day that I checked out of 5A for hopefully the last time last Monday (Day 14) I did another interview with Lymphoma Australia which Donna Gairns, their Director of Nursing, has just shared with me. I look quite bright eyed given what I’d been through, make-up is a wonderful thing – I think you can also see how excited I was to be going home.