Can’t put my finger on it but just slightly off today – not sick and no fever but having to concentrate hard to do even simple tasks (like remembering how to switch my ipad on). It’s as if I’m hungover. I was woken 3 times in the night for obs, which makes me a bit sleep deprived so that could be it, but part of me is actually hoping that it’s the start of a little bit of CRS so we know the cells are working and that syringe wasn’t just filled with saline (this is a phase 1 test by the way which means I’m guaranteed that it wasn’t just in case you were worried but in phase 3 randomised trials sometimes a placebo is used but never anything less than standard of care in Australia – they won’t not treat cancer patients ever who actually need treatment in trials – standard/current treatment is randomised against novel therapies in the final phase before a drug is approved and needs to show additional benefit to current treatment to be funded).
Before my 3am blood pressure and oxygen saturation monitoring I said to the nurse I could smell smoke which seemed like a weird side effect and she took her mask off and could smell it too. She checked and reckoned someone must have had a sneaky cigarette somewhere on the ward and it had filtered into my room…part of me thinks good on them – I gave up smoking at 30 before I had children, and I was a pretty pathetic smoker too – only started in my 20s as a young reporter to be part of the cool kids, but things are pretty grim in here and if it’s making someone feel better I reckon go for it. I have, however, told my children smoking could be one of the many reasons for my leukaemia so I hope they never smoke (got to use it for something!).
With that in mind I’m seeing this as a bit of a detox for me (ironically given how many drugs are being processed by my liver) but, like so many of us, I was drinking too much in lockdown (and we have been in the world’s longest lockdown here in Melbourne, still are). This is a real circuit breaker, the food here at the Peter Mac is amazing – I believe they only have around 60 inpatients in total throughout the whole hospital so that does count for something but my compliments do go to the chef. I’m on a high protein diet and even the veggie dishes are great (my vegan friend Brian Koffman, who is getting a starring role in this blog for good reason would approve!). I’ve also just spotted that I received my CAR-T cells exactly to the day 30 months after he was one of the very first CLL patients to have this treatment. They’ve learnt a lot since then about managing CRS and neurotoxicity so like so many he has paved the way for others and my trial and the data they glean from this will help too. I’m hoping this trial might lead to a change in the treatment paradigm whereby patients receive this earlier in their disease when they’re well and more able to tolerate it rather than living with CLL on drugs and it becoming progressively harder to treat. I think one day it could even be frontline, you’re diagnosed with the aggressive form of this disease and your t-cells are harvested, genetically reengineered and then given back to you as a simple one of infusion that cures you a couple of months later – how good would that be?
I’ve given up coffee since chemo I haven’t been able to stomach it and I’m trying to walk around the ward as much as possible because I don’t want to be stabbed with that painful injection to stop clotting in the stomach again which they did here on my first night – seriously the worst thing I’ve had done to me this week and the bruise is horrible. Oh and I’ve just ordered a Bluetooth blood pressure monitoring cuff and oxygen sats device for my finger so I can play doctors and nurses at home (and my carer can be both!).
A bit shorter today – I may update later but wanted to get this in early in case this is the beginning of CRS and things start going south (I might of course feel much better after a nap). I still passed all the cognitive tests but I really had to concentrate, dropped my tablets and my left hand just feels a little bit slow…watch this space.
Update – 1112am – the ward doctor Thomas Lew has been on his rounds with a Consultant and thinks I’m doing well, my bloods are good, and I passed all the tests. He thinks it’s too early for neurotoxicity with my particular CAR-T (they’re expecting it more around day 11) and he let me go off the ward to get this:
Definitely not the time to do a coffee detox! Which reminds me of this a friend sent to me earlier this week which will make you laugh.
6 thoughts on “Not firing on all cylinders”
Difficult to express my admiration for you …. reading this avidly, gratefully with amazement, hope and best wishes. Ad astra!
Aw thanks Mick – feeling so much better half an hour after coffee – go figure and just had my canula removed that they used to infuse the t-cells so I don’t have anything stuck in me. The day is looking up!
5am and the first thing I do is look up your day 2 update before facebook notifications….what have you done to me?!
Glad to hear you are feeling well 💙 love you xx
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Hah thanks Em (I’m assuming!!!). I took off my phone with a warning to all my friends that I didn’t want to start posting delirious rants – now keep logging online to take a peak and feeling more and more relaxed – now 53 hours post infusion and making family photo albums online to pass the time. If I stay this well they’ll let me go home tomorrow but I need to stay near the hospital (thankfully home is only 15 minutes away) for the first month with regular check ins (every couple of days next week) and I can’t drive for 8 weeks.
Great news! If you are feeling that relaxed in hospital you will just feel even better at home. Bet the kids are missing you but how amazing you are just down the road this time!xx
Your posts are still readable which is more than I can say about some of mine in the middle of CRS. STAY STRONG!