Spending what seems like your whole existence waiting for a phone call to put your life back on track is a funny one. I’m in complete limbo – do I plan normal things so that I can be as normal as possible or do I keep a wide open schedule ready for brain surgery to whip me up at any second. It’s odd. I don’t know what to do with myself. I’m usually 100mph with work and the babies and the rest of life, all of a sudden I’m 0mph trying to fill my time doing jigsaws and Lego (absolutely not complaining about those activities, they’re my favourite I’m just not used to being able to do them so much).

I found myself so anxious everytime my phone rang over the past few days waiting for my next appointment with the neurosurgeon to discuss surgery. I knew they’d discussed my case at MDT on Tuesday and knew they’d have a plan but I didn’t know whether I wanted the phone call to ever come through or not. Could I just ignore it forever please and we will go back to normal? 

I managed to spend two nights away with the work girls which was already planned before all of this and it was more perfect than I could ever imagine. They distracted me perfectly. We laughed, we cried, we went in the hot tub, they even managed to get me to eat  (which we know has NEVER been an issue of mine but at the moment I just can’t do it). They never once pushed me too far to do anything, I had plenty of naps and took it super easy, we all slept together both nights and just had the best girl time. I’m so grateful to them for adapting this trip to suit this depressing and tired version of myself that I’m rocking at the moment. It’s temporary and they’ll get fun Jen back once Nev is evicted. It’s funny how important the people you work with can become in your life – I am so grateful to have them right now and will never forget how much they have been there for me through this. Just incredible, selfless, gorgeous humans. 

I swapped my positive knickers to my impatient knickers today and rang Salford Royal for an update. I felt like I needed some clarity on when and what the next step was as it was eating me alive once I got back from being with the girls. Turns out there’s an appointment with my neurosurgeon scheduled for me on Tuesday next week. That’s all they know so far, but that’s a next step for me at least. So they can’t have looked at my latest MRI and thought ‘OH GOD, THIS GIRL NEEDS EMERGENCY SURGERY RIGHT NOW’ which is an absolute win in my books at the moment. Waiting another week is a luxury some patients won’t have and I must always keep that mindset. Especially whilst I’m plodding along fine. The tablets are making me super drowsy and lethargic but they’re keeping my symptoms and seizures at bay and I’m managing to function totally fine with just a bit of brain fog! It could be so much worse. 

So, some more time filling it is for now! I can manage that. I’m feeling more positive each day with all the success stories I hear and all the positive vibes I have around me. Even Oll seems to be doing better – he’s managed to go back to work and even seen his friends for some support. He’s managing to leave me a bit more without feeling guilty and we’re sinking into this new way of life now with a brain tumour diagnosis and surgery looming. What else could life throw at us?! Not much surely?! We’ve got a road of therapy, treatment and healing ahead of course, but I feel like we’re on a much better track this week. Last Tuesday, this was the absolute end of our world and we faced life without me in it. But so much has changed in a week including our mindsets. And we will do this. Together ❤️ 

Lots of love, Jen and Nev x