Hello Hello!
Long-time no blog, but I have decided to try and use my days spent in the hospital more wisely (she says, having spent the last 3 hours doom-scrolling on tiktok).
I left the blog hanging last time, saying I'd tell you more about the Clinical Trial in the next one. To leave you hanging for 3 months was mean. I'm sorry. I've been a busy girl, what can I say?
Ha, I only got -this- far in hospital, I am now trying to complete this post a mere 14 days after starting it. You can't force a good thing, ain't that true?
Reflecting back on May 2024 stirs up all kinds of feelings. Whenever I look back at the darkest times of my life, I'm reminded too of the silly/happy/joyful memories around that time. It makes me wonder about how powerful the mind is and how much easier we find it to hold on to bad memories rather than good ones. That feels like a shame. That said, let me take you back to May and June 2024, a dark(ish) time, that turns out, wasn't all bad.
May actually kicked off with a bang. Coming after 6 weeks of fertility preservation (which was probably actually the worst process I've experienced throughout my 9 years of cancer-ing), we took a well-earned spa break to Bath (for non-British readers, think quintessential British town with ancient Roman baths and spas galore). The weekend consisted of swimming in various pools, sitting in various saunas and steam rooms, and eating various foods. It was exactly what I needed before I went into full cancer-patient mode on the clinical trial. At this point I had already had all my CT scans, heart scans, so many blood draws (so much blood?! all in the name of research, I guess), urine tests, and I'd signed my consent forms, and all that was left was the dreaded biopsy.
When I say 'dreaded', I do mean it. Because surely it's not natural to stick a needle deep into lung tissue in an attempt to take a tiny portion of a tumour out? With a risk of lung collapse? While you're awake? Like, surely at that point you could just take out the whole tumour? Sadly, the biopsy is a mandatory requirement for the trial. When I asked if I could not have the biopsy (as it serves precisely Zero real benefits to me), I was simply told 'You do not have to consent to the trial if you don't want to'. Reader, the trial is really my best and only treatment option at this point, so I'm forced to suck it up and be 'brave' (ugh).
I had the biopsy on 8th May and as if fate was on my side, the nodule they were aiming for was in a dodgy location and they actually needed to put me under heavy sedation for the procedure. Free sleep! Woohoo! AND, my lung didn't collapse. Double Woohoo! I must admit, I was dreading this biopsy for months, so this whole thing came as a huge relief. I've had procedures on my lung before (a Microwave Ablation in 2018 - read here), my main grief with this biopsy was the fact that there were so many risks and so few benefits. The huge benefit of course was being able to get onto the trial, but having to go through this extra medical procedure in the name of research felt... unfair. Selfish of me? I guess I'd feel better about it if my tumours weren't deep in my organs, okay?
Roll on the 13th May. My first day officially as a Trial Patient. Sitting in the ward, patiently waiting, accepting all the tests, observing my surroundings knowing this ward would become very familiar to me over the next few months (years, if I'm lucky). The first two weeks simply consisted of taking 2 pills once a day. Simple enough. Come back in two weeks time for more tests, and my first infusion.
I took my first pills and waited. Taking poison in pill form is a little bit intimidating and you worry you'll feel immediately awful. Thankfully, I was fine. Over the course of the next two weeks I did have an oddly tingly tongue, but otherwise enjoyed a couple weeks of Summer in London, and some normality.
Pockets of joy: On the 17th May Billie Eilish's new album came out (what a life-changing day that was). On 23rd May I attended the most bizarre Garden Party with Sarcoma UK. Bizarre as it was attended by cross-party politicians, including the likes of Jeremy Hunt and Michael Gove.. Free drinks though, and I got to meet a Sarcoma Icon, the late Rob Metcalfe's brother. Chris is an incredible Fundraiser for Sarcoma UK and an all-round great guy. I also got to see my Sarcoma Sis, Geeta, which is always always special. On 26th May I went to Brighton and saw Busted at a festival (the second time I've seen them live, and rumour has it I saw them again in August, accidentally, of course, wouldn't want to get mistaken for a Busted Superfan).
28th May rolled around and I was in for my first infusion. One thing I learned quite quickly about being on a Clinical Trial (or maybe this is generally an NHS/Cancer Patient experience) was you do a lot of waiting. What for, you ask? Most of the time, I have no idea, and neither do the nurses! It's always one professional waiting for something from another professional... Let's be honest, it's usually all of us waiting around for the pharmacy to release medication. Alas, after a few hours of anxious waiting and my boyfriend figuratively (literally) banging his head against a wall, I was finally hooked up. Having this infusion felt momentous. I filled that little bag of medicine full of so much hope. Immunotherapy is the 'next best thing' when it comes to cancer treatment. I know people with Alveolar Soft Part Sarcoma around the world that have actually seen remission/had no evidence of disease thanks to Immunotherapy. Other cancers deemed 'incurable', have been cured by this kind of treatment. I knew the chances were slim, but still, I hoped.
The infusion was over within an hour, and I was released. In true Maddie (that's me) form, we went for biang biang noodles afterwards. I nearly fell asleep in them, but I always like to end a hospital day with something good.
It should be noted that at this point, fatigue is a regular part of my day-to-day life. To differentiate between 'I am ill'- fatigue and just my everyday fatigue is basically impossible. That's probably why it took me a while to notice that I wasn't very well...
The weekend following my first infusion, I saw friends, enjoyed the sunshine, was trying to do normal things, but truly I was exhausted. I remember visiting my grandad on 3rd June and him telling me I 'looked tired' - I thought I was quite observant of him. I went clothes shopping and every step hurt. Still, I powered through. What's a bit of tiredness, anyway?
Well, a bit of tiredness can very quickly turn into risk-of-life, as it turns out.
Massive Bucketsfull of Shit: I started to feel quite unwell on 5th June, waking up with a high temperature, so I contacted my trials nurse to ask for advice and check what painkillers I was allowed to take. My nurse advised me to stop my treatment (the oral pills I take daily) and to come in for a blood test. 'You might be neutropenic', she said. I wasn't entirely sure what this meant. I decided against travelling to the hospital, and instead spoke to my GP and got my blood tested locally. Having googled neutropenia, I started to worry, but was sure I'd be fine.
But, at around 7pm I got a call from my GP - 'You are mildly neutropenic, I'm not sure whether you need to go to A&E, you need to contact someone from the hospital'. So, I called the 24-hour line as I'd been told to do, and they told me I needed to go to A&E and that they needed to give me IV antibiotics. I have never had to go to A&E for my cancer before. I'd actually only ever been once before when I was a child. This felt so drastic to me, and I didn't even feel that bad!
Turns out that a high temperature combined with neutropenia, while on cancer treatment, is really bad, and is something that can very quickly turn into sepsis. Neutropenia is essentially a dangerously low number of neutrophils, a type of white blood cell that your body generally needs to fight off bad germs.. Having a low number of white blood cells/neutrophils puts you at very high risk of catching bacterial infections and developing sepsis, which can be life-threatening if not treated quickly. (I'm no scientist so that's my very basic definition!)
My first experience of A&E as a cancer patient actually wasn't awful. The NHS gets a lot of criticism but I was immediately put into an isolated room with my mum, was seen by a doctor quite quickly, and was hooked up to antibiotics within a few hours. I was sent home that night at around 11pm with orders to come back the next morning.
It was the next morning that I really started to go downhill. I think it was at this point I accepted I was ill and maybe hospital was where I needed to be. Back at the hospital, I was still neutropenic and clearly had some kind of infection, so they eventually admitted me into my own lil side room (because I'm special), and got me started on a regime of IV antibiotics. I was told I would be in for at least 2 days, but it could be longer.
The days that followed were the most ill I have ever felt, and I think it was the first time since my diagnosis I felt like a 'cancer patient' - you know, the kind of 'cancer patient' we see on TV? We're talking full body aches to the extent that I could barely move, sleeping through the day, unable to eat, throwing up, pain that I'd never felt before. They never found the source of the infection, I was just treated for sepsis. I continued I lost count of the number of blood tests, stool samples, and scans they took of me. Eventually, they gave me an injection of something called 'Filgrastim' and my neutrophil levels finally rose back to normal. It was a few days into my hospital stay, that a doctor informed me of my 'deranged' liver enzyme levels. I laughed at them and asked what they meant by 'deranged'? Well, it means they're extremely high. As in, the level should be around 30, and mine were around 1,000. I can see why they use the word 'deranged'. Damn crazy liver. This actually explained some of my stomach/digestion issues and the throwing up. My levels had been high all week, but they were so focused on my neutropenia, they failed to notice or bring it to my attention.
I was yet to really understand the consequences of having such elevated liver levels. I was awoken at midnight (midnight! RUDE.) and pumped full of high-dose IV corticosteroids. I can't tell you how close I was to leaving right there are then. What do you mean steroids at midnight??? If I had the energy maybe I would've made my escape, but I just let it happen. What's worse is the IV pump was noisy, so I couldn't even sleep while it was running. Lemme tell you, that was a sweaty night...
Steroids are no joke. The anxiety I felt the next day after a few of those heavy doses was so intense. But, it did help my liver, thankfully.
I got home after 6 days in hospital, which isn't too bad going. I had an MRI of my liver which was all clear. That MRI was a drama in itself. I've never had issues with scans before (other than getting the cannula put in), but this time I was holding off an anxiety attack for the whole scan. Do you know how hard it is to control your breathing (as they instruct you during the scan to hold your breathe), when you're fighting back tears and struggling to catch your breathe? Very hard! My cannula was giving up and all I wanted was to go home.
I started reading up on elevated 'ALT' levels. I did a lot of research on what it meant. Some may use the word 'obsessed'. I read that your liver can take weeks and weeks to fully recover. I read that usually you can't restart treatment again until your liver is within normal ranges. I read about all the nasty side effects of steroids. I read up on trial regulations, and the more I read, the more scared I got. It was becoming apparent that I may not be allowed back onto the trial, or that at least the immunotherapy part of the trial would be permanently withdrawn, and I wasn't sure if you could continue on the trial on just one half of the drugs.
While I shared these fears with a few people (I have learned not to bottle things up, thank you maturity), most of them told me to not worry until we knew for sure. That I could be wrong, no point worrying. Reassured that surely after just one dose of immunotherapy, they surely wouldn't stop it completely?
Unfortunately, my fears were (mostly) correct. And what made it much worse was the delivery of the news. I attended the trial clinic with my boyfriend, and the Oncologist who spoke to us made out like I was staying on the Trial, which felt like good news. She explained that once my liver levels were within a normal range, and we'd weaned down the steroids (down to maximum 10mgs a day of prednisolone), I could restart treatment. I asked that if that meant I'd be restarted on both drugs - the pills and the infusions? 'No, you won't have any more infusions'. 'Trial protocol is that if you have a Grade 3 or 4 side effect, that dug is withdrawn - permanently'. When I started crying (because, you know, hopes of life-saving treatment had just been crushed), she just looked at me, and then that was it... We took a taxi home, and I made a Chinese feast for dinner. Because what else was there to do?
Even though I had researched, and deep down I knew it was coming, nothing prepares you for actually hearing that news. It felt just as bad as when I was told I had cancer for the first time. Maybe that sounds dramatic, but that strong emotional reaction made me realise just how much hope I'd put into the trial. As I said earlier, I really felt like the immunotherapy as finally going to be the thing to give me a break from cancer. To actually do a number on the cancer. Now, there was a chance that having this liver inflammation on my medical record could destroy any chance of having any other type of immunotherapy in the future In some ways I get it. Clearly this drug causes such a huge inflammatory response in my body that it could kill me. And you don't want the cancer treatment to kill you. That'd be counter-productive. This shit is a lot harder, though, when you have no hope of ever having even a short period of remission. Just an endless cycle of trying and failing with new treatments, for the rest of my life, until eventually there's nothing left to try, or my body gives up.
Living with cancer means accepting that the 'plan' rarely goes to plan. That's all that happened here.
To be continued in the next blog, as this is quite a long one as it stands. If you did read this far, what a trooper you are. Thank you! And to anyone concerned about me, I will just summarise that I am still on the Clinical Trial and I am doing really well at the moment :) More to be revealed soon, when I can be bothered to write again.
Until next time
M x
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