Day +28 – Monday
So many fellow patients who, like me, are subjected to the Victorian procedure that is a bone marrow biopsy have told me they’re looking forward to this post. I have now had 28 bone marrow biopsies, and today’s day 28 crucial biopsy brings it to 3 in the past 4 months. I have quite the network of scars on my lower back – anyone for noughts and crosses? So today I’m bringing you my tips for bone marrows after a decade of getting them and I thought I’d also bring you some of the highs and lows just for fun – one of my favourite recently was the registrar who told me it was the first time he’d done this and introduced me to his supervisor and then I came to with the supervisor actually doing the procedure!
So my first bone marrow biopsy took place at Cabrini Hospital in late 2011 on a ward with 3 other patients. A young Piers Blombery (and frankly he’s still young) was doing his haematology fellowship and doing bone marrows is all par for the course. Dr Blombery has gone on to do amazing work on venetoclax resistance and I last saw him at the American Society of Haematology conference in San Diego…he looked slightly embarrassed when i said he’d been my first (sorry I just can’t help myself).
I didn’t know what to expect, this was pre internet sharing days and I went on my own – I’ve actually preferred to have this procedure on my own all the way through with a couple of notable exceptions. I was given a light sedative into a canula and went off to dreamland and can remember nothing of that marrow. It went well, with the exception of them finding that indeed my bone marrow was starting to be infiltrated by my disease which had started off lymphoma like in my lymph nodes but had now decided to set up camp in my bone marrow. With the exception of pain for a few days there was nothing more to it.
My second bone marrow was to check on disease progression 6 months later. I had another before I started chemotherapy in January 2013 and one to see if the chemo had worked well enough in April 2013. My doctor was actually told that I had no detectable disease and chemo was stopped after only 3 instead of the 6 cycles which is standard of care (we later discovered it was no detectable in the blood not the bone marrow which is a big difference and I began to relapse quite quickly). Because the decision was made that my next treatment would be a stem cell transplant (using a donor’s stem cells – this is the same as a bone marrow transplant) they started monitoring me every 3 months using a bone marrow, and sure enough it confirmed relapse.
The worst two bone marrows by far were in London in 2015 and 2016 (sorry Bart’s). Because mild sedation requires extra resources 95% of bone marrows on the NHS are just done with local anaesthetic in your lower back. Literally get on this table, pull your shirt up, tuck your knees under and let’s get to it. The first time I had that done was screening for the trial which bought me time to get to CAR-T. My mother was with me and after they had finished brutalising me she swept into the room with her bag on her shoulder and nearly caught all the slides on the table with my samples on them – I freaked out (still sorry Mum but it flippin hurt and I didn’t want them to have to redo it!). And again in London I’d brought my 10 year old son Marlowe with me on one of my fleeting trips to honour the terms of the trial and I didn’t realise that, because he’s a child, he would actually have to stay in the room with me so I found myself heavy breathing through it and trying not to make any noises that would show him how painful it was or scare him. This is how little he was at the time!
The best thing I did in hippy ‘soon to be Mum’ mode was join an active birth class in Islington North London when I was pregnant with Cameron. The techniques they taught me there to deal with pain have got through me quite a lot of the torture of the past decade (note to doctors and scientists surely there has to be a way we can get rid of bone marrow biopsies in this day and age?!). Anyway visualisation techniques are super powerful. My favourite one is imagining a wave crashing as you feel pain and riding that wave knowing that it’s going to come to an end and then recede – I couldn’t ride a wave to save my life but try the technique and see if it works for you. The other thing I like to do is wiggle my toes…this takes quite a bit of concentration and acts as a good distraction.
But by far the best thing I’ve ever discovered is the Green Whistle!!! So 5 biopsies ago I decided I’d had enough of going to a private hospital to pay out of pocket with my health insurance to be subjected to this procedure (by the way another tip if you do go to Cabrini is make sure you’re first on the list as you can hear other patients getting theirs done and it’s not fun!). By then I’d become an official patient at the Peter Mac so had my first here. My blood pressure is always low, it’s been a real issue over the past 6 weeks, particulary during CRS because it doesn’t give me that much room to play with when it drops. On the upside if I was in the least bit sporty I could have been an Olympic athlete…oh well. So I turn up at the Peter Mac (by the way I didn’t know you can use your private health in the public system and not have to pay out of pocket and it helps the hospital so I’ve put everything over the past few weeks on my private health – I’m pleased to use it for something since it’s so expensive and really hasn’t helped me much over the past decade!). My blood pressure was too low for light sedation so they suggested I use something called the Green Whistle. I’d seen this used by paramedics on the sporting field but had no idea what it was. Well wow, where was this all my life? The green whistle is an old anaesthetic that is inhaled called Penthrox. It is the best thing I have ever had in my life (sorry kids not counting you in this). You put your finger on the hole on the top, inhale deeply in and out and before you know it you’re off with the fairies. You are aware but so happy they can pretty much do whatever they want to you – and the best thing is it wears off really quickly so you’re back with the world and can drive home from hospital – and it’s another great Australian invention.
Seriously if you’re in Australia, being tortured like this, try it – I wish I’d known about it years ago and frankly it makes me almost look forward to my bone marrows these days which is just as well given I still have one more before Christmas (at month 3 on the trial). I think you can still see me under the influence as I had my CT scan later this morning.
So Monday’s test have now all been done – CT scan, ECG – a ridiculous number of bloods and on that note please meet Sunny who is the Canula Queen in Pathology. Another tip for Peter Mac patients – even if you have to wait a little bit extra – if you’re getting a canula, get this amazing woman to do it if you see her on. Her work is renowned within the hospital and she hasn’t hurt me once.
So now we wait. Thursday’s the big day – I’m excited, nervous, worried that I feel so well, distracting myself by going back to work (online) and we’ll see what Thursday brings. If it’s no detectable disease there’s a good chance this may be my cure – I can’t even begin to think about how massive that would be.