10. I’m a simple girl really – I like basic questions

So, today’s instalment; a chit chat with a Radiologist.

Being a pretty simple thinker, I expected the conversation to be about radiology… sure I know naff all about it, but hoping that the Radiologist would, I went in with hopes of learning something today.

As it happened, Annemiek van Ommen-Nijhof is actually one of the specialists involved in the Oligo study – the chemo trial which is being considered as part of my treatment plan. And it quickly became clear that the purpose of today’s consultation was for her to get to know me, understand more about my case, and determine whether this study is something in which I could or should take part. So nothing to do with radiology then!

Why consider the Oligo study?

When I first mentioned on the blog that this was an option, the general consensus from people was ‘good – get them to try anything’. And this was my view too, but having now discussed it in more detail, we’ve changed our minds, for a number of reasons.

When treating breast cancer, the general medical approach tends to be to target tumours individually – usually by surgically removing them and/or radiating them, sometimes also blasting the body with chemo as a clean sweep to try and prevent them spreading or metastasising (as breast cancer is prone to doing).

The thinking with the Oligo study is that, in some cases, where there are a few metastases (in the US typically <5, in Europe typically <3), it could actually work to target them more aggressively, with high dose chemo. But only if the cancer contains a certain genetic marker, and even then there’s no guarantee it’ll work.

So, as with every ‘miracle cure’ I hear about, or possible new treatment to try, it all comes back to two simple questions:

1. Is it relevant to my kind of cancer (ie we’re not trying to treat diabetes with a tuberculosis drug)?
2. Do the benefits outweigh the side effects?

To answer question one, we need the results of the biopsy I had on Monday – we should know this by Friday.

But to answer question two, we need to look at what the treatment involves, how it would affect me, and weigh that up against the possible (not guaranteed) benefit.

What would the treatment involve?

It’s described as ‘aggressive, high dose chemotherapy’. In my usual way, I ask the basic question – so what does that actually look like?

First, I’d have the same chemo I had before; regular cycles of injections in hospital, followed by a enough recovery at home to let my body rebuild, blood tests to check my immune system was back up and ready to take another hit, then round we go again. I’d have 4 x fortnightly cycles on a series of drugs called AC, then 4 x three-week cycles on a series of drugs called TC. And assuming there were no delays (where my body needed an extra week or so to recover before carrying on), the chemo would last around 5 months.

With the Oligo treatment, I’d then go into two more cycles, using much stronger drugs which essentially hit my immune system so hard, that I’d need to be in hospital under close observation for two weeks while it’s administered. My bone marrow would take such a hit that I’d then need stem cell treatment to protect and rebuild my immune system, then 4-6 weeks’ recovery before going again. Jeeeeeeeeesus – that doesn’t sound good! Now I get why they call it aggressive and intensive!

Previously, my mentality has been Just hit me with whatever you need to… but at this point, I find myself asking another basic question…

Quality or quantity?

Since losing my brother 20 years ago, my family and I have all felt far more aware of our own mortality, even more so in recent years with my experience of breast cancer. If I had a Euro for every time mum has said ‘you might get hit by a bus tomorrow” or “you can’t take it with you” I’d be a millionaire quicker than Del Boy!

So I’m sitting there listening to Annemiek talk about Oligo and all I can think of is my bucket… If I have one year, three years, five years or ten… would I prefer to spend them in hospital, having intensive chemo, killing my bone marrow, depleting my immune system and putting my body through absolute hell for something which may not give me any more time… time which I could be spending watching my Godson play rugby, traveling the world, cuddling my best friends baby, fondly teasing my mum, riding off to F1 races on the back of my dad’s bike, and generally living life to the fullest?

I know many people will think this is giving up or not fighting hard enough, or not trying all the options. But to me this is the exact opposite – it’s about grabbing life by the balls and making every day incredible – and that’s what Buy a Bigger Bucket is all about.

I’m sure as hell not giving up, I’m just not sure this is the right treatment for me. There will be other options. But right now, this isn’t one I want to take.

So what now?

After that, the rest of the discussion was about me; my emotional strength, mental outlook, physical state, and the increasing speed with which my brain lesion seems to be affecting my motor system – this is now spreading to my lower leg quite rapidly and I told her quite clearly (and in my most impressive Dutch directness!) that while I know they need Thursday’s MRI to quantify it, I know the lesion in my brain is growing, and that’s what they should focus on.

She completely agreed – even if I do have the right genetic marker, the Oligo study isn’t for me, my brain lesion is the priority, and they need to move on this now.

By the time we left the hospital, I felt far more informed, and despite not yet having all the answers, I’m clearer on likely treatment plan. By the time we got back to town for coffee, I’d had an email from the Oncology team, saying Annamiek had updated them on our conversation, and they’re now pushing forward on brain treatment as a priority. Which was what I really needed to hear.

So tomorrow, I have the last of this week’s scans – the second MRI – to confirm just how aggressively the brain lesion is growing. And on Friday, I’m expecting a call from my Oncologist to confirm the results of everything this week and an outline of my treatment plan.

My biggest challenge right now continues to be the frustration of watching my mobility reduce and feeling powerless to stop it – my feet are dragging, I’m unsteady walking, my arms get tangled-up when I try to dress myself… and I just want that downward momentum to stop.

But on the positive side… every day we’re learning more and getting one step closer to treatment…

This morning, my friend sent me a photo of her daughter’s first attempt to dress herself (a cool off-the-shoulder jumper look, where her arm and head were through the same hole) and we laughed at how I’m totally going to steal her style, as she rocks that look far better than me!… I also managed to not only put on a pair of jeans for the first time since this all started, but manage to do up the button with one hand… Kari and I had our nails done this afternoon, and somehow I managed not to smudge them before they dried (I rarely managed that when I could control both arms, let alone with one that’s just flying around all over the place!)

And my mum texted earlier to confirm that she and dad are coming over on Sunday night – which not only means they’ll be here when things kick off next week, but also that they can bring a stash of goodies 🙂

So I’m a #HappyBoxy tonight and will be indulging in another glass of delightful organic sulphate-free Sauvignon Blanc to celebrate the little wins 🙂 I hope you guys do the same (although no pressure to go organic sulphate-free – each to their own and all that!)

#BoxyOut