My Golden Birthday, Nearing 30 and A Treatment Update

She's back!

And she's a year older!

Today is my 29th Birthday - my Golden Birthday (i.e. it's the 29th of the month)! You only get one Golden Birthday in your life so I thought a special birthday deserves some thoughts on the ol' neglected Blog.

As me and a lot of my friends make the approach to 30, I have found people are having the same conversations, or a combination of the same musings. Apparently, approaching 30 is a big deal. Society puts on pressure to have achieved certain things before the age of 30 and be in a certain position in life. That pressure has many roots, and some of them make some sense, but I think a lot of it is unnecessary, takes away from the enjoyment of life, and honestly people's fear of getting older makes me sad.

The weird thing about being in your late 20s is that, for the first time in our lives, our peers are all in completely different positions. When you grow up together, there's a level playing field as you all go through the same life stages - school, college, work. Then you reach adulthood and everyone takes different paths. It can be a difficult adjustment and the human instinct to compare your life to those around you is stronger than ever. Nowadays, we don't just have our peers and neighbours to compare ourselves to, but thanks to social media we are living in this dystopian world where you can access information about literally anyone - we can compare ourselves to celebrities, and random influencers, basing our information on completely warped realities. We wake up, scroll on Instagram, see hundreds of people posting their carefully curated lives, wonder why our life doesn't look like that, then wonder why we're dissatisfied or feeling like we're not where we're 'meant' to be.

I am not afraid of ageing. There is something about being given an incurable cancer diagnosis at age 18 that has made me extremely grateful for ageing and all the time I get. In my last post, I wrote about what 'living like you're dying' really means, and it's not about living every single day like it's your last, just trying to live a life that's true to yourself and not anyone else's expectations.

Over the last 10 and a half years of living with cancer, I've met many others living with cancer, I've made some incredibly special friends, and I've sadly seen too many die too soon. I have friends who never made it to 29, let alone 30, and would've done anything to get to experience more life. Having such a heightened awareness of our mortality and of the importance of good health makes me simply grateful and excited for every birthday and getting older.

I do find it hard to hear friends stressing over getting older, worrying they're not where they're meant to be in life and feeling like they'll never get there. Can't we set and work towards our goals in life while enjoying the ride along the way? Life is always throwing unexpected challenges at us, setting us back at times, and I feel like the culture we've built doesn't allow for this and sets the bar too high all the time. Part of the beauty of life is that it's not all predictable. And humans are so incredibly adaptable, we can get through and achieve so much more than we think we can.

I've been having some health challenges the past few months. And herein comes a bit more of a 'Maddie's Cancer Tales' update.

I'd say back in May time this year I started to feel a bit rough. At this point I'd been on this Clinical Trial of an Immunotherapy treatment (Nivolumab) and a Targeted Drug (Sunitinib) consistently for coming up to a year. I'd also not long weaned off a course of steroids - I'd been on a very low maintenance dose of steroids for nearly 2 years to keep my liver happy. The steroids had been doing a great job of keeping my body happy and allowing me to stay on my treatment, but there were some theories that they could be stopping the Immunotherapy from working as well as it could. Some of the cancer in my lungs was growing while other bits were stable, and my team were on the look out for a new treatment for me.

So yes, I weaned off steroids, and all was fine for a few weeks, but then I could feel my body taking a bit of a turn. In May I started getting really bad persistent migraines. They were coming with dizziness and fatigue as well as the headachey pain and some of the visual auras and nausea that sometimes comes with migraines. I was found to be quite iron-deficient, so I had an iron infusion, which honestly didn't really help. Then, I was sent for urgent head scans, and they couldn't find anything wrong. Knowing I didn't have cancer growing in my brain was of course a relief, but didn't explain why I felt so rough. I had a big holiday to Malaysia planned for June so things got quite stressful trying to work out why I felt so bad. A week before I was meant to fly out, my immune system crashed and I ended up neutropenic. Neutropenia is when your body is running very low on white blood cells, which is a scary thing as it puts you at extremely high risk of catching an infection and becoming septic as your body doesn't have what it needs to fight off the infection. Luckily, there is clever medicine that boosts your cell count, and I was able to inject myself just in time to boost my blood counts before my holiday. We decided to completely pause treatment, to make sure my body could recover and to prevent becoming ill while on the other side of the world.

My sister in the Bornean Jungle!

Upon my return from Malaysia (which was the BEST), me and my team decided not to restart the Trial drugs, and instead to try a new treatment.

It was a bittersweet goodbye to the clinical trial as I didn't know my last treatment there was my last treatment, and my new treatment would be in a different hospital (same trust, and just down the road, but still!). It sounds weird to say it but I was attending treatment there for 2 years and now would just not be returning. The feelings involved with being a cancer patient are weird.

The new treatment is quite exciting. It is a new combination of immunotherapies (known as botensilimab and balstilimab) that my hospital has not used ever before. The combination is supposed to be very effective on cancers like mine, and is meant to have very few side effects. It is not a treatment that is readily available on the NHS or in many other countries outside of trials, but luckily has been offered to me on what's known as 'compassionate grounds'. This means the drug company have decided to grant access to the drugs in this case because they know it could be beneficial (to me!)

New Immunotherapy!

So, I had my first infusion of these immunotherapies on 6th July. It's always nerve-wracking being given a new medication incase you have a horrible reaction, but all seemed to go well. I spent that evening at the Theatre watching Hamilton with a friend and it was a great day.

I'm sad to say that all did not end up well, though. It didn't take long for me to start feeling a bit rough. I wasn't sure if it was treatment-related at first, as my symptoms were vague. However, when the following week I started having body aches, fevers, diarrheoa, loss of appetite and generally feeling like shite, I think I accepted that I was indeed experiencing side effects.

I was admitted to hospital and spent 5 nights there. I was tested for everything and anything, told several times they couldn't work out exactly what was wrong with me, tested for everything all over again, but by the time I left the hospital I was feeling better, even if we didn't have all the answers. Also, the room I was in was lush - if it wasn't for the stale toast and soggy pasta I was served you'd have thought I was in a posh London hotel. Thank you NHS! I was restarted on steroids and told that once I weaned off them in a couple of weeks, I could try the treatment again (good news, but after that reaction? Scary!)

One particular day during that hospital stay was probably the worst I've ever felt, maybe only topped by my hospital stay in Summer 2024. I was having a 40 degree fever, migraine, couldn't stop shivering, felt like I was going to throw up, and painkillers weren't touching it. To top it off, they wheeled me over to the endoscopy unit, and stuck a camera up my butt telling me that the Fentanyl would make my headache better. Reader: it did not. But it was cool to look inside my colon. A day for the autobiography, methinks.

So yeah, remember when I said all would be well after weaning the steroids in a couple weeks? WRONG

I started weaning off the steroids and my symptoms started coming back - fatigue, fevers, body aches. I was again brought in for a bunch of tests, but it was pretty clear my body was still fighting off the effects of the immunotherapy. My steroids were brought back up again and this time I've been on them for a lot longer and we are taking the weaning process a lot slower.

I have never had so many fevers in my life and honestly it's made me really scared to go back on the treatment. I'm not sure what thought is scarier - trying it again, or having the option taken away from me.

Back in December, I was told that there were no other treatment options left for me.

That's the scariest thing I've heard since I was diagnosed and it was the first time the words 'I'll try anything' came out of my mouth.

I'm lucky that as a few months have passed since then, my Oncologist has found this treatment for me, and that since then another drug used to treat my cancer has become available on the NHS. It proves to me that medicine is always moving and things are always changing. I'm lucky that my cancer grows slowly, so time is on my side. But boy does it like a curveball.

As things stand, I have been feeling a lot more myself the past couple weeks as I am slowly weaning off steroids and the hope is to get back on some kind of treatment in a couple weeks' time (CROSSING EVERYTHING).

Of course, though, as my life loves a lil bit of chaos, at the start of this week I woke up with a sore throat and it turns out I have Covid. In 2026! On my Birthday week! My favourite week of the year! Oh, and I punched myself in the nose with a clothes horse. But that was totally my own fault.

See now, I'm not looking for sympathy here, but if you do want to send me cookies (or buy me a puppy?), I will politely accept, as is my right as a sickly girl.

Obviously, I jest. It has been a challenging summer health-wise, one of my most difficult and long-winded set-backs to date probably, but I've got so much to be grateful for and I actually feel really resilient within myself. My support system is strong, my job is understanding, and my medical team, while not always perfect, are pretty damn good.

I hope the next few months bring me better health and that I can rebuild my strength and get back to myself physically. And maybe I'll even forget my distaste for Bucket Lists and join the Losers in making a '30-before-30' list. A fun and realistic one, of course.

So, embrace the greys and the wrinkles, or cover them up if you want, I don't care, but please don't be ashamed of your age and all things you can't control. Life is too short.

Rawr. Happy Birthday to me.

Until next time,

M x