Riding the rollercoaster

Day +13 – Sunday

Feeling a bit down today – missing the kids and being at home and I’m feeling lethargic for the first time – was much brighter yesterday. I did a very short walk around the ward and found it a bit scary as was wobbly. All part of the roller coaster I was expecting and I think I’m still recovering from the shock of how quickly things went south the other night. For those interested I found a couple of papers on the intricacies of dealing with CRS in the clinical setting



Dr Mary Ann Anderson came in especially to see me this morning – on a Sunday! She told me my neutrophils have fallen to 0.9 which is what they would expect at this stage and that my lymphocytes have risen to above 3 which is the first time they’ve been that high since I started venetoclax back in 2015. Lymphocytes are normally what they track to see cancer progression and I asked if it means the CAR-T is doing what ibrutinib does which is flushing them out of my bone marrow and lymph nodes into my blood stream and she said no her theory is that the rise is caused by the reengineered T-cell expansion itself but they just don’t know. We will know more about what’s going on 2 weeks tomorrow when I have my bone marrow biopsy to look for both the t-cells and any remnants of cancer.

In the meantime if my blood pressure stops falling I will be able to go home tomorrow but it’s more a you can rest at home because we trust you to come back quickly if you deteriorate than me actually being well. And Aideen pointed out she wasn’t expecting me to walk the Tan last time they let me out! Hello to her family in Ireland too who are following my blog while I remember.

Victoria has just shown me the bloods which Mary Ann discussed with me today. Here they are:

I had to get the canula removed from my elbow crease that emergency put in on Thursday night last night and it was almost a relief even being repricked because I hadn’t been able to bend my right arm for 3 days. But there are good sticks and bad sticks and you really learn to appreciate those who can canulate well. (I’ll try to keep this image small for the squeamish). Here’s what happened when someone missed the vein. And I have quite a few of that kind of thing that my poor arms have been subjected to over the past few days. I can see why I hear some cancer patients telling me how much they love their ports.

All part of the experience but you really appreciate the good sticks like Lia did for me last night. Lia is from the Philippines and has been working here for 3 years. She nailed it. She explained to me that in her home country patients have to pay extra for PICC lines and ports and most can’t afford it so they have to canulate patients with poor veins all the time. I’m enjoying learning about where they all come from. Wish I had been doing a featured nurse of the day from the start of this! I didn’t know that overseas nurses have to do a 3 month course and pay $16,000 to get their licence to practice in Victoria either regardless of how long they’ve practiced overseas.

Despite the massive differences in their cultural backgrounds there is definitely a strong cohesive Peter Mac culture here – I don’t know if it’s a combination of the building and management but I can’t imagine anywhere in the world doing it better so I’ll try to stop feeling down and enjoy it for hopefully the last night on 5A.

The Sweet Spot

Day +12 – Saturday

I am so much better today – and just to put my sisters at ease I’ve even managed to shower and put make up on so I’m back to being vain with my selfies. Yes I’m going to need a serious facial at the end of all of this. I’m not too sure if they were more mortified about me being back in hospital or my warts ‘n’ all image at my lowest!

I’m feeling alert with no fatigue despite Thursday night’s dramas, Friday night’s 2 hourly obs and today’s 4 hourly which felt like an age- I have slept but I did struggle with a couple of words. I passed my ICAN tests and my handwriting hasn’t changed but at one point I was trying to tell my doctor that I’d reactivated my blog but kept saying reenacted and knew it didn’t sound right but couldn’t find the right word. I was kicking myself later when I did remember. Hard to say whether that’s CAR-T, 9 years of treatment including 2 bouts of chemo or 3 children to be honest…early this year I asked the children what they wanted for Christmas before they went to school and they kept looking at me bewildered until I realised I was mixing up the word breakfast so yes losing words can’t directly be attributed to this particular treatment. One doctor said my bloods looked better than I did and they had a point.

I do feel a bit like no pain no gain though. I have a very high pain threshold – had 3 precipitous labours where I missed the first two stages of labour and ended up only realising I was in labour in the 3rd stage having the babies in 4 hours, 52 minutes and 25 minutes at home (was too fast to make it to hospital with my daughter) so I really don’t feel pain but I certainly felt that 36 hours of pain. I’m a massive proponent of clinical trials – or as Professor Andrew Roberts, of venetoclax fame, would say – “good” clinical trials and I was so lucky that this one allowed me to be with my home treating doctors and I feel safer because of that. It is more scary than anything I’ve ever done and they just don’t understand what expanding t-cells in vivo are doing and I’m the first on the higher dose with CLL here (not sure about globally but this cohort has only just opened so doubt there are many others ahead of me). I was feeling much more like I wanted to be the 200th patient on Thursday than the 1st. I’m actually risk averse – I didn’t even go through the Channel tunnel for years until I was sure it wasn’t going to leak so I’m just not one to take uncalculated risks (and it’s not like the Eurostar was that dangerous!). The worst thing was not knowing how bad the pain was going to get or when it would stop but when it did yesterday lunchtime it disappeared almost as quickly as it started.

One thing which I had done at home was use a blood pressure cuff that I’d bought online – it’s Omron’s Bluetooth cuff (cost $180 here in Australia) and integrates with an app on my iPhone. I looked at the data today and you can actually see my falling blood pressure and rising pulse rate which spiked as the CRS really kicked in and I went to hospital. I’m a bit of a nerd I know but it did give me some sense of being able to monitor myself – I’m not sure what the doctors will think but I’ll offer them the data for the days I wasn’t being monitored here even just for interest

So I’m back in my space ship like room today with the bonus of having some footy to watch and dinner being served in bed – see this hospital lark isn’t all bad.

My nurse tonight is Victoria from Guangzhou in China – she spent 6 years working in Singapore and has been here for 3 years and hasn’t been able to get home to see her family in that time. The level of experience and dedication of all these nurses is incredible and this is currently the only CAR-T centre in Australia and one of very few in the region so what they’re all learning here will put them in very good stead should they ever want to work anywhere else.

We’re both massive fans of Dr Mary Ann Anderson who also saw me today and said if I’m very good, rest and drink lots of fluids she’ll let me go home on Monday. She said the level of CRS I had and the duration of it is what she described as “the sweet spot” – enough for substantial activity to take place or as Brian Koffman would say “the killing spree” to get stuck into my cancer – while not needing more treatment than paracetamol, IV fluids in moderation and penicillin as a precaution while they screened me for infections. I’m on my last lot of IV antibiotics tonight and am hoping I’ll be canula free tomorrow which will make this feel a lot more like a holiday than it has done up until now. I’m back to 4 hourly obs tonight too which will help with the sleep too.

My appetite has returned and it doesn’t look like I’m going to be one of those CAR-T patients who drops a heap of weight after this procedure – but I’ve spoken too soon in this very short journey already…I’ll settle with a cure and having to lose weight the old fashioned way.

And while I have you – this appeared on my facebook history this week. It’s exactly 4 years since the ABC here in Australia did a story on my journey to get venetoclax. If you haven’t seen it I thought you might find it interesting – and it will help you appreciate how little my children were and why I’m so grateful to be at home this time.


Wheelchairs at Dawn

Day + 11 – Friday Fun

Well that has to be one of my most miserable nights for a long time despite being given exceptional care by the Royal Melbourne with hourly obs and cultures of everything they could as standard of care for treating a CAR-T cell patient with a high fever, excruciating bone pain and falling blood pressure.

I was pumped full of penicillin and a haematologist visited me in the ward at 1am to check on me. The verdict when the consultant Dr Mary Ann Anderson came over from the Peter Mac this morning was CRS, and Dr Lew tells me it was grade 1.5 – I didn’t need the “toci” but might still if it returns. My hair was crazy (I know you’re saying and this is what you’re worrying about?!) – I would totally have given Amy Winehouse a run for her money – and you can see how happy I was! Just to make this experience a little bit more real (as if you needed that). Thanks for all the messages – sorry that I have taken so long to update but I’m sure you’ll forgive me. You can tell they’re worried about you when you’re on 30 minute obs. At least tonight they’re 2 hourly.

This all kicked off on Wednesday with bone pain which radiated out from the large bones in my legs to my lower back, shins and even, at one stage my jaw. I spent most of Thursday in bed/or on the sofa but it was during a crucial footy game that my temperature hit 39 (please note I was watching not playing!) and Nicholas took me to Emergency while speaking to the registrar at the Peter Mac. Peter Mac doesn’t have ED and it’s also a “covid free” hospital so they don’t admit anyone without negative results – I was always going to spend a night at the Royal Melbourne while waiting for those to come back. And it was eye opening. Those poor nurses working in full PPE, putting layers of plastic on top of plastic. I had my own room in the ward but it was a different world over there.

Tonight I came across the questions I had for Con Tam on Monday:

When will we be able to find out if the t-cells are multiplying? Do they ever not multiply – is there a way to kick them into life? Do they still have some of my cells in America? When should I start worrying – I’m worried now that I’m too well.

I’d said the same to Dr Michael Dickinson, whose trial this is, when he checked in on me earlier in the week and he had assured me that they’d seen activity with this particular CAR-T product even with no side effects. Well I certainly know it’s working now and there are a couple of theories why I am experiencing it (probably more but I’m groggy from no sleep for 36 hours and just wanted to update you all). This is early days so my data will help establish it but in my head (obviously with only an amateur haematologist badge) I want to believe that I actually had more CLL in my bone marrow than they were finding in the biopsies they took from my lower back. It can accumulate in different spots, find a home it’s comfortable with and hang out there. My early disease was more lymphoma like and liked to party in my lymph nodes (hence my neck getting bigger than my head) but it’s also very active in my bone marrow now. So I’m now thinking that it was proliferating in my thigh bones so the fact I’m getting CRS is because the reengineered T-Cells are going to town on my disease there. Another option could be that I had so little disease that the cells are causing inflammation because they’re expanding with not much to do – hey that works for me too. I’m sure we’ll know one day.

In the meantime my temperature is back under control. I haven’t had paracetamol since lunchtime and the bone pain has almost completely subsided. Word has got out about my blog so there’s a bit of a roll call going on.

There was a hilarious handover this morning where a nurse from the Royal Melbourne pushed me out of the ward in a wheelchair to a waiting orderly from the Peter Mac in a different wheelchair to bring me home to 5A. I felt like I was part of a hostage handover. But it does feel like home back here on 5A and I feel safe.

Dr Michael Dickinson popped in to see me tonight and we did our first photo shoot

You can see how literally hot I am! I’ll forever be grateful to him for getting me on this trial – just no more CRS please (apparently it can come in waves so they’d be surprised if what I experienced overnight is it and I’m here at least for the rest of the weekend). I do however have the room with the best view. I’m leaving the blinds up and fantasising that I’m in Manhattan – a city that also doesn’t get to sleep.

Careful what you wish for

It’s midnight on day 10 into day 11 and I’m in the high dependency unit at the Royal Melbourne after a torrid 24 hours of horrendous bone pain, chills and then fevers tonight which landed me here. Hourly obs and they’ve given me antibiotics but sheesh I feel ill – chills, fever and the bone ache is like nothing I’ve ever experienced. Will update tomorrow but on the bright side I think the T-cells are definitely working! I’m being looked after really well and will be transferred over to the Peter Mac in the morning. I know I needed a bit of drama to make this more interesting but could do without this. ouch!

Happy Hump Day

Day +9 – Wednesday

I skipped the blog yesterday because nothing is really happening…although I did twitch briefly before I fell asleep last night and woke up with a growing like pain in my right femur this morning and now a twinge in my upper left femur. I’m used to side effects with ibrutinib but they tend to be painful joints and random bruises so this is different and very minor but have been reported in trials as Cytokines rise which gives me hope my living drug is expanding as it should. I’m not sure when the reengineered T-Cells might start showing in my blood but I had a test on Monday and I hope I’ll get the results when I see Michael Dickinson on Friday morning. I was expecting heavy fatigue by now but I feel completely normal and would go back to work if I was allowed – instead I’m forcing myself to rest even though I don’t feel I need it.

The key date for me will be 20th October which is day +28 and I’ll have a bone marrow biopsy then to look for any traces of CLL. The results will be given two days later and I’m hoping they will show there is no detectable disease.

If things continue as they are, so boringly uneventful I’ll just update this every couple of days – next update will be after my appointment on Friday on Day +11. If something does happen that puts me back in hospital this will be updated by my sister so please don’t think no news is bad news.

Meanwhile I’m feeling better than I have in ages, not having the worry of preparing myself mentally for CAR-T has made a big difference and I’m so relieved. This is an interview I did with Director of Nursing Donna Gairns last week for Lymphoma Australia while I was in the Peter Mac which really explains how difficult the mental and emotional side of things has been so if you are heading down this path make sure you have someone on your medical team taking care of this side of things too.

Ooh just had lunch and noticed my jaw is now starting to hurt – I’m imagining those t-cells travelling around my bone marrow wiping out cancer cells throughout my body – how exciting!

Calm before the Cytokine Storm?

Day +7

I’m boringly well, really well. Sorry there’s not a bit of drama – although I should be careful what I wish for.

I had a blood test, ECG and saw Con Tam today. He’s very happy with how things are going. Only had the temperature issue to report. He says if I’m going to get side effects it will be in the next 14 days but they’ve seen patients do well with no side effects too so I’m not to worry if I stay as well as I am. Next appointment not until Friday on Day 11 when I get to see Dr Michael Dickinson whose trial this is.

Just caught up with my friend Charlie in London again who recorded this for me if you want to see if I’m still able to string a sentence together or can even pronounce schaudenfreude correctly!

Sunday Best

Day +6

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).

Continue reading “Sunday Best”

The Ice Queen

Day +5

I hadn’t noticed it until this afternoon but now I look at the photo from yesterday I must have been feeling it on my walk yesterday as I only wear gloves in the depths of winter or up at Mt Buller when the children and I go skiing but I’m running cold. Very cold and that’s not normal for me. I normally can’t wear anything to bed and sleep with just a sheet, I have been known to have the window open even on the coldest of nights (something I attribute to growing up in the north of England). But now I’m cold and I’m so cold that my right hand feels like I’ve got frostbite so I’m wearing my leather gloves inside (thanks to my 13 year old son Marlowe who bought these for me with his own money). I also put a photo above of a key ring Natasha asked my 16 year old Cameron to order for her from England for my birthday from Etsy. I’m wearing thermals, a fleeced sweatshirt and ski fleece on top – I am seriously cold but not shivering and my toe on my left foot decided to start tingling an hour ago but that’s now stopped thankfully. My temperature is still 36.3 so there’s no need to head back to hospital just yet.

I’m excited because at least it means something is happening – I am feeling better than I have in a long time – the chemo last week must have done a hell of a job on whatever little disease I had left in my bone marrow and now hopefully I’m getting a little bit of manageable Cytokine Release Syndrome – a little bit wouldn’t be too bad – here are a couple of papers on what would happen if I get too much:



I don’t think I need to call in to the hospital just yet but it means I need to keep an eye on things – and perhaps the 7km walk I did today around the gardens after the 5km one yesterday was pushing things a bit – I just feel so well it’s invigorating. My patient friend Lynn who has kept a watchful eye on me from her home in Hawaii has warned me to slow down and rest and she’s right – this isn’t the time to do too much. With that in mind I’m going to start getting these posts proofed before I post just in case I’m not aware I’m speaking gibberish (once again some might say I often do).

My hospital bag is packed and by the front door and I’m organised if we need to go quickly. I’ve done all my neuro tests and I’m still fine and Nicholas thinks it’s funny to include questions such as who was the lead guitarist in Led Zeppelin. In the meantime I’m going to have a rest and watch the rest of my Octopus Teacher on Netflix which is simply stunning.

What day is it?

Day +3/4

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.

Not firing on all cylinders

Day +2

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.