Iife has been crazy to say the least – ’ve even applied for a disabled badge over the last few days which was odd. We joked about it at first, and I do still feel like a bit of a fraud as surely people have it much worse than me?! But when I had my last neuro episode – I lost complete function in my legs and had to sit down in the middle of Tesco until it passed, so it’s justified to ensure I can get myself and the babies or whoever else I’m with safely out of a car park or off a busy road if I feel an episode coming on. I can literally hear myself say ‘Of course it’s justified Jenni, you idiot. You’ve been diagnosed with a large frontal lobe intermediate to high grade Glioma for god sake’. But I guess I just never in a million years thought I would need any of this type of thing and still in some weird way feel like I’m talking about someone else. This was never in the life plan and it still doesn’t feel real for the most part.  I thought it would never happen to me. And it’s taking some serious getting used to, to settle into this new version of me and a new look on prioritising my safety now that I know why I’ve felt so crap for so long! Just yesterday I said to mum – yeah I’ll meet you at Starbucks in the morning! Before we remembered that in fact I absolutely won’t – I will need to be chauffeured like the princess that I am.

I had my first ‘supervised’ bath time over the weekend. It ended up as a whole family affair – the husband entered first, followed by two babies and even the dog all watching me have a nice ‘relaxing’ bath. And then it dawned on me. When the hell did I ever get a minutes peace in the bath before all of this?! I didn’t! This was totally normal for the kids to just follow me into the bathroom and interrupt me 😂 A nice relaxing bath on my own hadn’t been something I’ve managed to do in the past 7 years since I had kids. I’m a mummy after all – who do I think I am?! So there’s something this brain tumour can’t take away from me. HA! Suck it NEV! 

Would you believe I even cheated on my husband in his dream last night?! Could our brains be any more mean to us recently? Come on now! This guy has literally been the glue holding me together and now I’m off doing awful things to him 😂🙄 can we give it a rest now, I feel like it’s definitely time. 

This week holds a midwife girls trip for me which has been planned for ages and has probably come at the perfect time to distract me. It will be a little bit different now. But that’s okay, us midwives are nothing if not adaptable and able to have fun in practically any situation. So I’m looking forward to it. Just being together will be so gorgeous and it will be nice to actually keep some original plans that I’d made before my life was flipped upside down. 

Whilst we enjoy girls trip, my medical case will be discussed at the brain tumour multi disciplinary team meeting on Tuesday at Salford Royal (imagine that being your normal Tuesday at work – Mondays would no longer suck as hard would they 😂). They will go over my scans with my neuro team, physios, speech therapists, oncologists, phsycologists etc and decide whether we opt for awake surgery or fully sedated surgery 🫣 they’ll then get in touch with me and Oll for a meeting with our consultant to discuss the plan and allow us time to ask our questions (of which I have a growing list in my phone – another piece of great advice from friends). They will tell me what they recommend I do. And I’ll put my brave knickers on, put my life in their hands and let them take over. It seems like a crazy concept, but if I think about it, that’s the easy bit for me now. I don’t need to do a thing other than just be brave. And I can do that. The specialists do the rest and I take a heavily or even fully sedated 4-6 hour nap! 

So next week will be another weird one, and I keep saying can I not just call on one of the anaesthetists from work to just please sedate me for the next month and wake me up when this is all done? Surely is that not a perk of the job?! Apparently not. Truth is I’m scared shitless for a craniotomy and I just want this surgery to be over and hear that the bulk of Nev has gone! Then it’s just chemo/radio to face for any remaining bits of Nev which seems like a walk in the park right now – how perspective changes hey! 

So a weekend of seeing family and friends it is right now. Trying not to get too overwhelmed, trying to rest through this crazy fatigue with two screaming children and just keep plodding along. It’s lovely to see so much of family and friends all at once but  there’s something eerie about it too – I can’t shake the thought that everyone is needing to see me just in case anything awful happens. I’ve been the person visiting the sick people many a time  before when they’re diagnosed with something awful – but being on this end of it is feeling strange for sure. 

I know this surgery isn’t the end for me, it will just be the beginning of a new lease of life hopefully! But I can’t ignore that there are risks involved in open brain surgery can I? I could lose function of certain parts of my brain, meaning I don’t quite function like I do now – especially with the location of my tumour being right frontal lobe which controls things like muscle movement, memory, speech, gross motor etc. I’m hoping to write some letters when I get a second tomorrow to Oll, the children and a few more just incase I do lose those things after surgery. So that they have the old me still inside, to remember. That’s if I can get through the emotional side of it first of course. Oll doesn’t read the blog, I don’t think he can bring himself to, and I respect that one thousand times over – they can’t be nice to read about your wife. So please someone tell him there’s a letter somewhere if I wake up and can’t talk! Also forgive me if these blogs go from making sense to being utter nonsense – they’re already taking me longer and longer to articulate. Turns out it wasn’t just baby brain after all 😆

Lots of love, Jen and Nev ⚡️