2. Diagnosis… the emotional rollercoaster to acceptance

So how did I find it again?

Another lump? Nope. I had a mammogram just a month ago and all looked clear. But no-one knows your body like you know it yourself, right? And I just knew something wasn’t right.

To begin with, I was having problems moving my left hand. I had feeling, and no pain, but I was looking at my fingers and my head was saying ‘come on, move?!’ yet my fingers were just not responding. My gut knew something was wrong, so I went to the doctor and he referred me to a Neurologist, saying ‘if you’ve no pain or loss of sensation, it’s likely something motoral, in your brain, so let’s start there…’

Two days later, I had an MRI which showed a lesion in the non-dominant side of my brain. My brain… fuck. That can’t be good, can it? When it was in my breast, I could see it in front of me, I could feel the lump, it was physical, and worst case, hell just lob the damn thing off! But it’s not that simple in your brain, is it? Especially when it’s close to your motoral system.

Going all Dutch and straight to the point, I asked the Neurologist “is this going to kill me?” and he responded with the words “it’s not curable”. 

Ouch. 

Needing to feel productive… buy a bigger bucket

At that point, desperate to focus on what I could influence, I quickly tried to process everything, and decided that if I couldn’t beat it, I’d focus on making what time I have left utterly epic, live my final chapter with absolute gusto, and hopefully inspire people to live their lives in the same way after I’ve gone – not one bucket list but two, with some pretty amazing experiences in both. 

The friend who was with me suggested that my only problem with this would be that, knowing me, I’d empty the bucket and run out of stuff to do! My response? “That’s fine, I’ll just buy a bigger bucket…!”

So quite quickly, being the impatient patient I am, I thought I’d accepted my fate and started to focus on making my epilogue epic. Every song I listened to in the car was a potential ‘going out’ song, I calculated my net worth to fund things, added stuff to the bucket lists, updated my will, and even started a business plan for starting a ‘funeral planning’ business to help people make this kind of thing fun rather than morbid… I was in ‘productive’ mode and just needed to feel I was doing something.

I told a few close friends but decided to wait for more details before telling my parents and family – why blow their world apart with such a bombshell, then leave them hanging while we wait for more information on what the future holds? No, I decided to leave them in ignorant bliss until I had both the answers I needed, and the strength to present the news in a way which showed them I’m not scared but ready to fight.

Reality setting in… there is hope

That was two weeks ago. In the meantime, while the few friends who knew were understandably trying to be positive, tell me not to give up, and refusing to entertain the idea that I had anything less than ten years in me yet, I was starting to learn more and realized that my future wasn’t necessarily just a downhill slog to ‘the end’. It still all hung on the full extent of my diagnosis, which at that point, was just a single MRI showing a lesion in my brain.

The following week, I saw a Neuro Oncologist at Amsterdam’s Cancer Hospital (the VU). Unlike the Neurologist I saw first (who admitted he knew about brains but not cancer), she was far more optimistic, and started her pitch with “well it’s near the top, looks accessible, and while we may not be able to get it all, I’m confident we can operate”. Right! Hope restored! We can fight!

Not quite that simple – we still don’t know if it’s my breast cancer that’s escaped, spread, and could now be in my system almost anywhere (ie a ‘matestation’) or whether it’s a primary brain tumor (something completely new). The only way to find out is a full CT scan. 

If it’s elsewhere, surgery will only tackle part of the problem. To hit the lot would need chemo, and like last time, that could only shrink it or slow the growth, as the first Neurologist said, it won’t cure it. But if the rest of me is clear, we go to surgery, cut out what we can, and zap the rest to hell with targeted radiation. The former would be another long slog of treatment, with no guarantee of success, and ultimately just prolong the inevitable – back to the bucket list. But the latter could see me back on my feet in months, and living a relatively normal life again – hope.

So I had the CT scan and waited for the results. 

It’s a weird feeling, waiting to hear what the rest of your life is going to look like and how long it’ll be. But there was nothing I could do to influence the outcome, except rest up (my body felt sluggish and tired, fighting what’s going on in my brain, and my hand was getting more and more useless) but I just had to try not to overthink things. My driving license was revoked (standard procedure in NL if you have a brain injury) but I could still ride my bike (the benefit of Dutch bikes with ‘pedal backwards’ brakes!) so I went to the park, laid on the beach, ate enough to keep up my energy levels, and even went to the gym once! 

Relief… a familiar adversary

Two days later, my CT results came back, showing a small growth in my breast on the edge of the radiation field where I was treated before. This suggests that the lesion in my brain is likely to be a matestation (repeat) of what I had before, it’s shape looks that way too. If this is the case, it’s good news as we know what we’re fighting, breast cancer (although more prone to matestasis) is less aggressive than a primary brain tumor, and having it in my breast again makes a biopsy possible (to confirm exactly what it is). Win one.

The CT scan also showed no indication of anything elsewhere else. Again, good news (especially as I was convinced that I was riddled with it by this point, so hearing I wasn’t felt like a huge relief. Win two.

And being breast cancer, the team which led my treatment last time would likely be the ones to pick up again – I liked them, believed in them, felt in good hands, and the familiarity gave me further comfort. Win three.

So despite being told I had breast cancer again, in my boob and my brain, the CT results were a relief and I found some sense of strength coming back. So I booked a flight back to Blighty and decided it was time to tell the family.

Telling the parents… the tears finally flow

Telling them was hard. I knew it would be. And at first I was trying to be strong for them. I felt frustrated that my hand wasn’t getting better – just flopping by my side, knocking things over, unable to do up my bra, or open a bottle of water… and I just wanted to channel all my frustration into fight. But without a treatment plan or fully confirmed prognosis, there was nothing I could do except sit and eat biscuits, and watch my parents trying to be strong and supportive for me.

Eventually on Sunday morning, I finally cracked. Dad went to walk the dog and I just balled my eyes out on my mum. Her first words were ‘at last, you’re letting it go!’ When dad got home, he joined in and said ‘finally, now I don’t feel guilty for being upset too!’ I told them I just wanted to be strong and fight back, but felt utterly helpless without a plan – I could only see the cancer taking hold and calling the shots – sapping my ability, my energy, my positivity, my life. But mums and dads just have a way of saying the right thing sometimes, and they reminded me that I’m the most impatient, determined and driven person they know, and when the plan comes, they know I’ll go after it with everything I’ve got. 

I needed to hear that from them, and I needed their support – I knew that, but wasn’t ready to let my emotions go until then.

So after an emotional weekend with tantrums, tears and far too much cake, I got on a plane this morning and am now back in Amsterdam, ready to take on the fight.

I have a call with the hospital tomorrow and an appointment with the oncology team on Thursday, so hopefully by Friday we’ll be ready to go. It’s Pride in Amsterdam this weekend – one of my favourite weekends of the year over here; so full of love, hope and happiness. That’ll probably be my last shout before we go into battle again, so I’m really looking forward to it! 

And after that – look out cancer, we are stronger than you and we’re coming to get ya, all over again… 👊💪

#BoxyOut