Day +31 – Thursday
I’m really sorry that I’ve needed 24 hours to process yesterday’s news and, while I bury the lead check out my new hairdo as cut by my 10 year old daughter Natasha.
I went in to get my results on Day 31 and was met by Carly, the trials nurse who spent time with Nicholas and I while we waited for Con Tam to come in on his day away from the hospital. She could see me trying to read her and kept changing the subject. It was strange thinking that she knew my results as would a lot of the doctors I know at the Peter Mac and part of me wanted to get on with it and the other part didn’t want to know. I haven’t been drinking at all over the past 6 weeks but may have had a couple of drinks on Wednesday night – I was a mix of emotions – in fact I did an interview with Lymphoma Australia which nurse Donna will share with me and I’ll put up on here at some stage but I was trying to temper my excitement with the knowledge that if they found cancer cells in my bone marrow biopsy, it wouldn’t mean it hadn’t worked, but I knew it would be disappointing as those I know with CLL who have done well, and in particular those in the early trials who have not relapsed years later after their CAR-Ts, had no detectable disease at day 28.
Con arrived in his civvies (he is one of the most stylish dressers I’ve ever met and I rarely see him without a suit and pocket square so it was funny to see him in jeans!). I couldn’t read him at all. We got in the room and he said – it’s the best news, no detectable disease. Not a single cell found. I started crying. Nicholas captured the moment he told me – we were going to film but I chickened out and, to be honest, it just felt like one of the biggest and most personal days of my life so wanted to keep something for me. Just wow – I still can’t believe it. I was overcome with emotion, my mind was racing – Con and Carly gave me a hug – yes I know it’s Covid days but we’re human. It was just so exciting and I’ve never had this news in Australia. The last time I was told I had no detectable disease was when I was in London in December 2016, sitting in Pizza Express with the children and my friend Liz Corbin near the BBC’s Broadcasting House. Martina, my trials nurse then, rang me and said that, after 11 months of full dose venetoclax my latest bone marrow (yes the one with my 10 year old in the room) had come back clear. That was momentous but this feels even more.
In 2016 I didn’t know some patients in early trials were developing resistance to venetoclax, I didn’t think it was the cure but I did think it had been worth travelling around the world for, given that even the strongest chemo we give CLL patients hadn’t been enough to get rid of my disease. But this feels different – I felt the CAR-T moving around my body, cleaning out my lymph nodes and my bone marrow, from my jaw (yes funny that it had a spot there given how much I talk), to my neck, to under my arms – it was killing cells not being detected on the CT scan which was clear going into this and coming out. It’s such early days but, as Con said, this could be my cure, it may not come back – we won’t know for years but I’m so optimistic that my incurable cancer has just been cured, that the CAR-T has got to every last cell, that there isn’t one rogue mutant thing ready to start replicating itself and get the better of me, that I will be here to see my children grow up. It changes everything. Nicholas captured the moment in pictures before giving me the biggest hug.
I was overcome with emotion and had an hour long neurology assessment to compare to my baseline going into this. It was so hard to focus on all the tests and questions and Dr Roberts Akhtvers was very patient with me. My brain was exploding. The good news was he gave me the results and my brain function was exactly the same as it had been a month earlier.
I’d briefly called my mother, my children and their father and I was just desperate to ring all those who’ve supported me through this, indeed I did that through the night including speaking to Brian and Patty Koffman and lovely Jennifer Creager. I wanted to make sure they all heard it for me before I started sharing more widely.
And I felt a need to go to Church. I’m a bit of an Easter, Christmas kind of girl with the children but I really am filled with gratitude and I want to make sure I make the most of this gift, not just by continuing to help other patients access treatments like these, but by being the best person I can be for my children and all those around me. So at lunchtime yesterday I wandered up on my own to Christ Church at the end of the street. Sadly it was closed because of Covid restrictions but I came across lovely 94 year old Norm and his wife June in the potting shed. It was their first day out for a while and I told them why I was crying, how thankful I am and why I had come to the church.
They urged me to go into the garden of remembrance and say a prayer there which I did. I thought of my Dad, who died suddenly just before I moved to London in 2015. I’ve felt him with me through this and I know he was with me yesterday. When I returned to Norm and June I said that when the church reopens I’d bring the children and we’d celebrate with them. Norm said he was a former engineer who had been treated for Leukaemia at 37 and survived. I asked what his secret was, he looked so well and full of life and he said the love of a good woman, and gave June a hug. Felt like fate to have met them – what a joyous day.