53. Months…

In the past 24 hours, I’ve had this conversation five times. One has involved denial, one has involved tears, one person hid in a bathroom, two in a caravan, the London Eye was involved, as was a beach, a 2-seater BMW with the top down, flights to Azerbaijan and in incident with two very hot Dutch Policemen.

If the conversation was as good as the excitement, Friday could have been awesome! But unfortunately, I wasn’t that lucky.

On Friday morning, I met again with my Oncologist, Dr Kerver. I really don’t envy this guy’s job – in our past three meetings, he’s been the bearer of bad news, and this time, even when he had a call during our meeting to say his kid was sick, he still managed to show compassion for me, professionalism in his work and concern for his own.

To be fair, I think I did ok too, given the circumstances. It’s not every day you hear yourself asking the question “Days, weeks, months, years…?” and hearing the answer “Well, not days or weeks, but not years either.”

My response was simply, “OK”.

You see, I think I was expecting it. Last week’s CT scan hit me out of left field, but this week’s PET scan just confirmed it; my breast cancer stopped responding to chemo and, because I now have lesions in multiple locations, surgery and radiation are no longer options to fight it – it’d be like fighting a whole army with a single sniper. We’d hoped that chemo would kill off the rebels, leaving just the leader (Mutley) for the sniper. But Mutley took cover, the rebels rebelled, and the result is I’m now surrounded.

So what did we learn on Friday?

The CT scan provides a topography picture of my torso, using dye injected into my blood to highlight things which look suspicious.

The PET scan is more detailed. Firstly, I’m injected with radioactive glucose, which makes a beeline for the cancer cells. Once injected, I doze for an hour while the glucose works its way around my body and organs trying to find cancer cells. I have to stay as still as possible, because engaging my muscles will attract glucose to them too, and we want it to go to the cancer cells. So I’m also given a relaxant to encourage my muscles to sleep. This means that, unlike a noisy MRI or a lung collapsing CT, the PET experience isn’t painful or uncomfortable; on the contrary, in a weird way it’s actually quite relaxing!

On the scan, the radioactive glucose lights up like a bulb, showing where there are cancer cells lurking throughout my body (except in my brain, as my skull hides all that). So whilst the PET and CT aren’t comparable (because they show different things), if we see the same things in the same places on both scans, it strongly suggests there’s something there.

Mutley (view from my feet looking towards my head, so my left lung is on the right of the image)

Puppies (at the bottom beside my spine, and on the right, outer edge of my lung)

My PET scan confirmed that Mutley has had puppies, which are grouping in the tissue which surrounds my left lung. It also shows a few starting to gather in other locations in the vertebrae in my spine. So I have breast cancer; it spread to my brain, and to my lung, and is now in my bones as well.

My response again, “OK.”

AN: well what else is there to say, except “Fuckety Bollocks” and word to that effect. And that won’t help anyone (even if it is a bit satisfying, sorry Mum!) Whereas saying “OK” says a) I’m mentally prepared for this, b) you don’t need to pass the tissues, and c) the more important discussion is what we do next. So let’s focus on that…

So what do we do next?

We stay positive – Boxy’s Law 101! If I’ve learnt anything over the past eight months, it’s how much more I respond (both mentally and physically) to positivity than negativity. That might sound obvious, and I can hear some of you saying It’s easier said than done. That’s true and I’ve felt that way many times, especially when I felt unable to influence things. The irony is, clinically, I’m probably less able to influence things now than I was back then, yet I feel more in control of my future now than I did back then. And for someone who refuses to sit back and wait for the inevitable to happen, this keeps me positive, for now.

AN: to put it another way; the inevitable is going to happen to all of us, at some point. It’s just going to happen to me slightly earlier than most people. And that gives me an advantage, in knowing I need to get a wriggle on and do the things I really want to do.

Is there still hope?

Of course there is! There’s always hope.

Typically, when someone has cancer, the approach is local (surgery /radiation) and/or wider (chemo) treatment to kill what’s been found. These ‘traditional’ treatments have been widely used, often with good success rates, which enables Oncologists to give you a pretty educated guess on the likely outcomes. But once those options are exhausted, they’re less able to predict what will happen, as the options are less tested, less understood, less proven, or less applicable to the needs of their patient(s). The only educated guesses they can therefore make at that point are generally based on what happens if they do nothing more. That’s the “How long have I got?” conversation.

But there are new treatments being developed all the time, based on research largely driven by organisations like Cancer Research UK and the Dutch Cancer Society, which are largely funded by sponsorship and charitable donations, from people doing crazy things like running marathons, half marathons, 10ks, 5ks, and a myriad of other things.

As these new treatments emerge, they need to be tried and tested, before people like Dr Kerver can recommend them to people like me (and give a better answer to the “How long?” question). This testing comes through clinical trials, where people who have cancer are given the new treatment and their progress is closely monitored. If it works on enough people, the new drug can then be approved, licensed and prescribed to patients in the ‘traditional’ way.

This is where the ‘miracles’ happen; when new drugs ‘cure’ people, or at least keep the disease under control enough for the patient to lead a normal life (a bit like how diabetics manage their insulin levels, or epileptics manage their seizures). These are the conversations you hear like “My friend was told they had just weeks to live, but they found a miracle drug and are still here two years later…”

This is the space in which we’re now playing.

So can I go into a clinical trial?

Possibly. The scientists can’t just let anyone take part in a clinical trial, because there may be something which makes them different to the rest of those taking part. So if the drug works, there’s no way of knowing if it was the drug or the ‘something’ which made it work.

They also have to make sure it’s safe for me. Having already had surgery, radiation and chemo, I’m vulnerable and the last thing they’ll do is give me a treatment they don’t yet fully understand. I therefore need to meet their criteria of being a) being physically strong (ie my blood must have recovered from chemo) and b) clinically stable (ie no more lesions developing in my brain).

If I’m eligible, we’ll then look at what treatments are being trialled that may be suitable for my condition. (There are many types of cancer, and many variations of each, so we’d need to try the right one for me).

If I’m eligible and we find a suitable trial, then comes the big question: do I want to do it?

This may sound like a no brainer, but it’s not that simple. For instance, they offered me a trial once before, but it was so invasive and debilitating (with no guarantee of success) that, had I done it and not seen any improvement, I’d just have accelerated the inevitable and spent the past six months in hospital, rigged up to a machine which wiped out my immune system, then rebuilt it through stem cell treatment. My quality of life would’ve been appalling and I didn’t want that. Whereas, if they ask me to try a drug which allows me to retain some sense of normality, I can still do the things I want to do and, if it doesn’t work, at least I’ve lived my best life. And if it does work – happy days!

But first we need to see if I’m eligible, so we’re arranging an MRI (brain scan) and blood tests this week and we’ll go from there.

Good things come in small bundles

My mum always said this when my brother used to lean on her shoulder 🙂 (she’s also only 5 feet tall, so it seemed appropriate!) I guess it’s just a cute way of saying quality over quantity and that’s how I view things. The chances are, my life will be shorter than most. But that doesn’t mean it has to be any less fulfilling, satisfying, exciting or rewarding. Death is horrid for most people, it’s just likely to happen to me a bit sooner than most people. I can’t influence that, but while there’s still life in me, I can influence what I do with it, and that’s why the clinical trial decision is a big deal for me. I’d rather have an awesome life and die happy, than spend the rest of my life feeling like shit and wishing I was doing something else! The light box in my lounge reads “Don’t wish, make it happen”. I didn’t see this on a postcard or an insta feed, it’s just how I think and what’s driven me since I lost my brother and realised (the hard way) the value of time and how achievable things are if you want them enough.

Am I ok?

Right now, yes. I feel a little stronger every day, as my bloods are recovering from chemo and I’m not really feeling the adverse effects of the cancer in my lung and my bones – I just feel stiff, sluggish and inflexible – like a bad hangover; annoying but not debilitating. At some point that will change, when my blood gets back to normal and the cancer starts to take over. But until that happens and the balance tips against me, I’m focusing on living the best life I can, for as long as I can.

Have I cried? No. Do I need to? No. At some point I will, I’m sure (probably when that balance tips, when I stop feeling better and start feeling worse). But right now, I’m ok – there is still hope, there are still cards on the table, and I’m very much still in play.

As always, I’ll keep you posted. In the meantime, keep the happy photos coming (they make me smile, a lot!), stay positive, and don’t wish – make it happen.

#BoxyOut

PS – for those wondering; Friday’s incident with the hot Dutch policemen was my Uber being pulled over for a spot check on the way home from Rob’s – sadly nothing more exciting. I live in hope… 😉