Almost feel Bridget Jones like documenting that it’s Day 6, I’ve lost 4 kilos (not telling you my starting weight though!) and have had a very healthy day of eating. Not a gin and tonic in sight – and it’s been a while on the alcohol front too. The temperature deregulation of yesterday has disappeared and I got to spend a few hours with my children today and it was quality time playing board games and baking bread (iso continues)
I also showed them the cognitive tests I’m doing 3 times a day. Cameron (16) and I shared the same baseline but Marlowe (13) shocked us both by hitting it out of the park – my baseline for the biogen app is 65 – I’ve managed to get up to 73 symbols numbered correctly in a 2 minute period but Marlowe did 95 on his first attempt having only seen his brother doing it once. I asked him how on earth he had done that and he said “it was easy Mummy I just memorised the key” (that’s 9 numbers and their relevant 9 symbols – I had no idea he could do this).
It was also a big day for the Leukaemia Foundation which received Federal Government Funding to continue the work of the Blood Cancer Taskforce, of which I’m a member. It came as our first strategic action plan was published. It’s been a great honour to sit with some of Australia’s best and brightest doctors and scientists with patients being given a strong voice at the table. I’ve directly benefited from the listing of 4 different drugs for CLL on the our Pharmaceutical Benefits Scheme by this government in the past 18 months alone – in fact $5 billion has been put towards funding blood cancer drugs on the PBS since 2013. The Morrison Government has also funded CAR-T at the Peter Mac, without that I couldn’t have done this trial so their commitment to patients couldn’t be clearer and I’m very grateful to the Health Minister the Hon Greg Hunt MP in particular. I know tireless campaigners such as Jan and Michael Rynne fighting for access to these therapies in places as far off as Ireland would love to be where we are in Australia today. It’s been wonderful to work with my friends Emily Forrest, Melanie Kelly, Tim Murphy and Catriona Rafael at the Leukaemia Foundation on this as well as my doctors.
You can find more about how we are aiming to reduce the number of unnecessary lives lost to blood cancer by 2035 here:
I’m back with Nicholas tonight and the children are back with their father Robert. I’m hoping I’ll be well enough to resume looking after them in the next couple of weeks but that might be pushing it. I asked Natasha if she was worried about it and she said no Mummy we’re fine – we’ve done this before and it was a lot worse when you were in England! Oh and look what arrived today – my Bluetooth blood pressure cuff, oximeter and thermometer – all set to monitor things if they start going in the wrong direction.
At the moment I have to be chauffeured everywhere as I can’t drive for the next 8 weeks because of the risk of seizure and I need to be with someone at all times for the first 28 days and I don’t want to put that on my children – they’ve got enough to worry about! It feels strange because I still feel completely normal, I’d like just a touch of a sniffle or something so I know the T-cells are growing. Mine are a bit younger than the ones that already have FDA approval so, in theory, the side effects may be delayed by a week or so too – if that’s the case Thursday this week might be when things start kicking off!
I’ll be at the Peter Mac tomorrow afternoon for a blood test, ECG and an appointment with my doctor Professor Con Tam so hopefully will know more about what is going on after that. You’ll hear it here first.
8 thoughts on “Sunday Best”
Obviously when young Marlowe gets to an age when he may be subject to these tests the designers will have to up the ante – so no more questions about Led Zeppelin! I had to google the answer …
So glad you didn’t have to pick up your suitcase last night!
Coincidentally I’ve got an appt with Con Tam tomorrow as well. If I see you I’ll just lift my hand -I’m female and usually have a hoodie and jeans. Best wishes for your appt.
Btw is Marlowe named after Christopher Marlowe, the poet and playwright or after Raymond Chandler’s private investigator Phillip Marlowe – as played by Humphrey Bogart and Dick Powell and others? Another cognitive decline question perhaps 🙂
Yes Phillip Marlowe – his Dad is a crime author! Although he did love seeing the name Marlowe when we visited the Rose Theatre in London. My appointment is at 3.50pm – definitely say hi if you see me – I have no idea what I’ll be wearing but you have the advantage of knowing what I look like.
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Apologies if my above response seemed ‘trite’ – I understand all you have achieved and all the work you have done and all the difficulties you have been through with this disease. I’m still untreated – for now – but not for too long – so I feel a bit like a kindergarten kid who is just learning to read and wants so much to get stuck into Kafka… 🙏🏻
Hah not trite at all -as I hope you can tell by the tone of this blog, I try not to take things too seriously either! All good – do say hi tomorrow if you see me x
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Me too!!! Deborah is amazing (and lots of other things) wave a second time for those of us who greatly appreciate all she is going through!!!
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My appt is 3.40 🤔 I’ll try to be quick 😉
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All sounds good and pretty routine. I like it.
Thanks Brian! I said to Con I’d like at least a little bit of a sniffle but he said that no side effects would be a really good result and they’re seeing activity even when then happens so let’s see what happens over the next 14 days. It’s a bit exciting!