I’m feeling the best I have in ages today – no muddle headedness at all but I’ve just checked my chart and it seems that today is day +4, Monday is day +7 which means there was no day zero – infusion day was day 1 so somehow I’ve lost a day (I had this a lot on my last trial but that was because I was travelling backwards and forwards from Australia to the UK, not because I can’t count!). I’ve also just calculated that day 101 will be New Year’s eve so, all going well, there will be a massive party for however many of my friends I’m allowed to have at home at that stage under the Covid restrictions – you know who you are!
The last meal of the condemned woman on Monday night, which now appears to be day zero or day -1 (depending which way you count this), was a high quality Australian wagyu beef burger while watching that age old tradition of seeing my Australian Football League team Collingwood lose a game it needed to win to do well in the finals series.
And today is going home day +72 hour bloods for the trials unit, see the doctor, another ECG and a visit from the neurologist and I’m out of here. I have to say it’s felt like a bit of a holiday after 8 months in lockdown and I highly recommend it to others – the food is superb, the care is second to none (I’m being looked after by 13 specialist teams) and check out the architecture
I also love that the Peter MacCallum Cancer Centre is a teaching hospital – Lucas was taking bloods for the first time today and did mine. He’s about to graduate with a Masters in Nursing – a 2 year course from the University of Melbourne. All the students I saw over the past few days were so professional and a credit to their teachers and I had no problem including them in my care. It was wonderful to see them learning and the culture at the Peter Mac is superb – so positive.
I had a great experience with so many different nurses looking after me including Aideen this morning who is one of the many Irish nurses who have been sponsored to work here – just so warm and caring. Nurses like Rebecca also pictured here made the experience really pleasant. If they’d just stop stabbing me I’d give this place a 5 star rating on Wotif! Everyone wanted to be on the blog which was nice – they appreciate that this is all part of the learning experience for post CAR-T treatment and I’m still surprised that I’m well enough to write (I may have to come back and tidy this up at a later date!).
I also caught up with the kids who are equally relieved – I’ve enjoyed my 10 year old’s music list she put together for me on Spotify to listen to.
I am excited about going home but Nicholas is concerned I’ll get sick on his watch. We have this card if we have to come back with a fever or frankly if anything changes. My details and the trial number and pharma company are on the reverse.
They’ve asked if I do need to go to an Emergency Department I go to the Royal Melbourne which is next to them and still only 20 minutes from my home as they know about CAR-T and will proceed correctly. The main thing is that unless I am actually dying I mustn’t be given steroids as they would kill the T-cells and it also mentions the drug that they can give me if I start showing signs of neurotoxicity. All very sobering but I’m at risk of this until about day 28 and most at risk around day 11.
I’ve also just bought a medical alert bracelet with those details -and signed up to www.medicalalert.org.au
Update – Dr Roberts Akhter is happy with my cognitive test (actually got my best score yet – baseline was taken on Monday when I was still recovering from chemo). Monette the pharmacist came and talked me through all my meds – I stay on a morning dose of allopurinol, Bactrim (antibiotic), valtrex (shingles) and now an antifungal med and take my ibrutinib at lunchtime – that has now been reduced from 3 tablets a day to 2 because the anti fungal medication interacts with it and makes it more potent. I’ve bought a range of pill boxes in the past but this one is by far my favourite and I definitely need to it to manage all this.
Dr Tom Lew has been to see me – my bloods are very good and have improved since these taken yesterday – now I’m not even neutropenic.
So now I’m home on what we’ll now call day 4 (3 days post infusion) when I thought I might be in intensive care – I wish I’d had a crystal ball to know I was going to feel so well, like better than normal and I wouldn’t have been so anxious or choked up when I spoke to my children and my mother for the last time before the infusion. This afternoon, before the rain came, I went for my regular 5km walk around Melbourne’s tan with Nicholas who took this photo.
I know things could still go downhill when the cells grow but at the moment I’m enjoying how well I feel. I’ll continue eating the 6 very small high protein style meals the Peter Mac was feeding me (think an egg on toast and rasher of bacon for breakfast, fruit for morning tea, tuna sandwich and small bowl of soup for lunch, fruit and yoghurt for afternoon tea and something like a minestrone soup, beef stew with lots of veg, jelly and ice cream for dinner). I was eating small portions but so much more than usual and this is apparently because my body has much higher calorie needs at the moment. Despite that I still managed to lose 3 kilos – thankfully iso means I have more than that to lose but they don’t want me to lose too much weight at the moment so I’ll keep eating well and exercising and see what happens. Weight loss is another sign of cytokine release syndrome and it’s common for CAR-T patients to lose up to 10 kilos after the procedure. I had a visit from the nutritionist which was really helpful and she said if I don’t eat enough I’ll just start losing muscle and they don’t want that so I’ll eat well, drink lots of water, exercise and take all my drugs at the right time of day – I’ll do my part and I just pray my mutant cells are doing theirs.
9 thoughts on “What day is it?”
Dear Debs, I’m so relieved you’ve come through this stage with such flying colours! So lovely to hear your good news. Sending heaps of positive thoughts your way. Much love,
Thanks gorgeous – so nice to be home in my own bed tonight!
Deb – you don’t know me but I’ve been following your blog since my CLL dx in 2017. And now that you reactivated your blog I’ve been hanging on every post of your Car T experience. Today I was getting concerned as you hadn’t posted -but you did! And you are at home and doing well! I’ve been putting off communicating and have felt like a voyeur hiding behind a screen – or more like the eyes looking through an old painting – just watching – and I finally decided I had to thank you for all you have done and all you have gone through for all us CLL’ers. You and the very generous Brian Koffman – your interview with him about his own CartT experience was very moving.
Wishing you the best of everything
Thanks so much – that’s really kind of you and honestly it’s why I do it (not for the nice messages but that’s an upside) but when I was diagnosed I followed quite a few people and sadly I didn’t have many in my situation, particularly younger Mums to give me hope. And I was conscious of people disappearing and found myself searching for them and normally when they stopped posting it wasn’t good news so I’ve always made sure people know I’m here. Sorry for the delay today – they were doing so many things to get me out of there. Am home tonight and it feels so weird – like I should be taking my blood pressure and doing my sats and all my other tests. I’m still expecting something to happen when my young cells grow up – this CAR-T is a different manufacturing technique to others so my cells are about a week behind the ones that are approved so around day 11 will be telling. Thanks for coming out of the shadows and feel free to chime in if you have any questions or thoughts. The nursing student today asked me how they harness the power of a virus to reengineer a T-cell and I realised I had no idea – I hope I get to see the manufacturing plant at some stage. Hope you’re well, best wishes Deb x
I just want to second all this! It’s a privilege to just follow this journey!!
Deb!! I’m not the least bit surprised you are knocking this out of the park but so happy to see it.
Keep slaying the beast!
You may not remember me from way back when on the CLL forum. I do remember you as a mom with a kiddo too! You’ve clearly done a lot to help others with CLL alongside tending to your own health. I, like so many others, appreciate your honest and personable account of your experience. I hope it continues to be a success and you get to have that party on New Year’s!!
I do remember you Misty – I should post this update on the CLL Forum too while I think of it – if you’re still a regular there please feel free to share! Hope all is going well for you too x
You are doing well. Interesting about the steroids on the card.