Me and willow have a deal. She sleeps in our bed on Saturday nights. We’ve had this deal for well over a year now. Every Saturday without fail, we have girls night and she sleeps in my bed. Oll gets demoted to the sofa or Willows room. He usually spends it watching football all night or something else awful on telly and definitely secretly enjoys the space too 😂 Sometimes we have to tweak it a little bit if I’m working nights or I’m away for some reason. Oll runs girls night on those occasions. We did this as a way of meeting in the middle really – she would be in our bed every single night if she had it her way! Having this agreement was a way of saying that this is the special night of the week that is set aside for your request. Something that you feel really strongly about. We hear you – you want to stay in mummy and daddy’s bed. This isn’t something we can do every night as mummy and daddy need their time and space too, and you have your own big girl bedroom. But one night a week, we can do that for you as long as the other nights, you understand that you must settle in your own room. That might not be right for everyone. Some parents will allow their children in their bed every night and some parents wouldn’t allow it at all. And that’s fine – we all do things differently. This works for us. And we’ve made sure we kept this the same throughout this whole ordeal. It usually consists of a movie night in bed and then we fall asleep together. This Saturday was no different – we watched princess diaries in bed with the blinds open so that we could watch the lightning storm at the same time. She loves a storm just like me – so we had loads of fun counting the seconds in between the lightning and the thunder to see how far away the storm was and trying to catch a glimpse of the lightning bolts as they lit up the sky. It felt like a particularly special Saturday night in my bed for some reason. I think to be honest it’s just my new appreciation of life. Everything seems like a precious moment now. Even the simplest of things like this. That we do every week. I’ve always known how lucky I am to have these babies. But even more so now. I’ve really taken this time to slow down and appreciate every aspect of life. When it was time for willow to go to sleep, we rolled over to face the window – incase there was any more lightning that we might want to watch. And she drifted off to sleep peacefully whilst we held hands. Once she was asleep, I took some time to open my notes and have a look at my to do list. Sometimes I might have an email I need to send or some life admin of some sort to do whilst I lay next to her. But in my notes on this night – my admin task was to apply for and write my will. A little bit different to the usual stuff. My life admin at the moment is pretty wild. 

So I applied through macmillan for their free will writing service as I lay next to my sleeping Willow. I should already have a will to be honest – but it’s just something I never got round to doing before this. I can’t put it off any longer now. So I sorted it all out online through macmillan – I don’t have anything to leave to anyone apart from the children and obviously they go to Oll. So it was very straight forward. And they were kind enough to put it through as an emergency so that I have it all legally binding before surgery. So that’s a job ticked off. A depressing one, but a necessary one nonetheless. Even though I should have already had a will, it felt like I was being rushed into getting one, especially because they pushed it through the system so quickly for me.  So it felt a bit sad. But I won’t need it. Not just yet. It’s not my time to go. 

My phone has been like a hotline from Salford Royal this week. My key worker rang to ask if I have any questions or want to talk about anything. I really appreciated that. Ringing her was on my to do list but her proactively getting in touch with me to check in was nice. We cleared up a few logistics regarding visiting hours when I come in for surgery. She advised they’ll let Oll come to see me when I’m sent to the ward after recovery no matter what time it is as we will likely miss visiting hours. But that no children will be allowed at any time – it’s not a nice environment for them she said. I can leave the ward to see them though which is good. Id rather them see me when I’m well enough to walk around and not scare them with anything in between. She also told me I can pretty much carry on as normal until surgery date – there’s not many restrictions on things I can’t do which is amazing. She did mention I shouldn’t climb up any ladders so I’ll have to pack that in 😂 and reiterated no unaccompanied baths but I don’t get those anyway do I! I told her I’ve sorted out my will ahead of surgery and asked if there’s any other important things she would suggest doing like that. She laughed and said I’m jumping the gun a bit there – we had a bit of a giggle together and it made me feel better. These surgeries are so routine for them, that it seemed like she hadn’t even contemplated death. Amazing! 

I also had another MRI. They want to check if the tumour has grown in the last few weeks. This will help them decide if they should bring surgery forward or not. So hopefully I don’t hear from them. Ignorance is bliss and no news is good news right?! I hate the MRI’s – if you’ve ever had one, you’ll know the score. It was just of my head, so an hour long. There’s nothing like being stuck in that tunnel whilst not being able to move and hearing all the banging that really brings you back down to earth and reminds you you’re actually not very well. There’s nothing else to think about or do in there. At least I was in the posh new Tesla MRI scanner. It’s the only Tesla I’ll be getting in for a while without a driving licence isn’t it! It’s the least they could do! 

I went into work to visit the girls too this week. I love those girls and am really missing the social aspect of work (as well as the amazing job I’m so privileged to do). They have been collecting gifts and money over the last few weeks and wanted to give it to me. When I tell you they have been so generous – it’s an understatement. A vast understatement. You are now reading a blog from a very posh lady. She is now the proud owner of White Company pyjamas, a huge Scamp and Dude hospital bag filled with other Scamp and Dude goodies, loads of amazing self care bits, good luck charms, handmade teddies, tea bags, a mug, sweets, biscuits, slippers, Lego – the list goes on. The hamper box was HUGE honestly. Personal highlights were some socks that say ‘fuck you tumour’ and a 500 piece jigsaw of a picture of us all on our Christmas do 😂 We had a few laughs whilst I opened it and it was just lovely to be back on the ward with them. I didn’t get chance to see everybody due to shift patterns – but I’ll catch some more of you next time ❤️ 

Katie, who is my line manager (but is so so much more than that by the way) presented me with an envelope when it was just the two of us. To save it from being so overwhelming. There was a cheque inside. For an enormous sum of money. All the midwives have been collecting – and despite the fact that we moan we’re chronically understaffed – there’s quite a lot of us! This is my ‘fuck it fund’. This is to have loads of fun with my family over the next few weeks before surgery – and after too. So we don’t need to worry about preserving money for more sensible things like the rent. Because they know I’ve been worrying about things like that, and they want to take that away from me. The only catch is I have to send lots of pics of us having fun. I know I keep saying how incredible these girls are but seriously?! I broke my rule of no crying in work and balled like a baby in Katie’s arms 🥹. I’m eternally grateful for you all and your generosity. I will be strutting around Salford Royal post surgery in my White Company pyjamas in no time girls. With my fuck you tumour socks on, smelling like selfridges and reading my spicy book to keep my brain entertained 😆🌶️ 

Yes I’ve been diagnosed with a brain tumour. And yes, it’s CRAP. Beyond CRAP if I do say so myself. But I feel like in some ways I’ve won the lottery. I can’t quite explain it but this diagnosis has given me so many gifts. And I don’t mean the PRADA sunnies and white company Pj’s! But my perspective has changed in an instant. I have a new found lust for life and level of appreciation for the little things that I’ve never experienced before. And this is enhancing my life so positively! For me, it has taken being faced with death, to truly appreciate life. Bit dramatic, but we knew that about me didn’t we. 

This has got me thinking about drawing the positives out of this journey and how I can do this. I want to raise awareness of brain tumours and the importance of regular eye tests. This is my purpose now. This is why I was sent this brain tumour. I also want to help people going through something similar  know that they’re not alone. We can do this together. There is an army of us. And we can fight this. So watch this space on that one – I’ve been in talks with Specsavers earlier in the week and have a call with the BBC later on this week. I’ve also created a TikTok account where I can share a visual version of this blog and will continue with my Facebook page. (Links below) I WILL get this word out somehow – I will create a storm and bring some good from this! 

Lastly, my gorgeous friends have created a go fund me page tonight. I haven’t felt comfortable with doing this until now. So I’d initially asked them not to. I still don’t know that I feel comfortable with it. It makes me feel like charity and it’s just ODD. But I face a lengthy time off work and we simply don’t know what the future holds. Which is scary. I wanted to make it clear that this fund will be used for a number of things. It will be used to financially help us if we begin to struggle when my sick pay runs out. Or if any new treatment becomes available. I want to be able to fight this with absolutely everything I have. I have been doing research into cancer free diets and alternative therapies such as acupuncture and aromatherapy (both recommended by the brain tumour trust) and it will help me with things like this too. If things turn south, this will also enable me to enjoy my last moments with my family. There is no pressure AT ALL to donate anything. Cost of living is NOT a vibe, so trust me – I get it! Your love, support and prayers are one million times more important. But I will include the link below if you want to take a look. 

Lots of love, Jen and Nev x

https://www.tiktok.com/@jennihayes3?_t=8q1dDruWg3V&_r=1

https://gofund.me/1d2da3d9