We’ve been spending a lot of time making memories recently. Especially now we have ‘the eff it fund’ which we have named FIFI. FIFI is cute, she’s so much fun and just an all round great girl. We love FIFI. Nev on the other hand remains in my bad books. For life. We’ve organised some lovely things to do with the babies this weekend and next weekend holds a night away for me and Oll which will be gorgeous. We’ve also enjoyed some meals out with our vouchers and I even went for a massage and had my nails done! Having FIFI is just making this time waiting for surgery so much sweeter – it is helping to distract me and allowing me to create these memories with my family whilst I can. It’s a gift that is so much more than money. 

That brings me to the go fund me page 😳 I am totally just blown away by the sheer generosity from everybody. I genuinely can’t believe it. This will help us so much when my sick pay runs out and we need to still pay all our bills. Or if a new treatment or trial becomes available. I want to be able to fight this as aggressively as I can, so having this nest egg there is so important and means I don’t need to delay if any alternative therapies are suggested. It means I don’t need to return to work when im still poorly with ongoing treatment just for the financial aspect of everything and it means I can take up any offers of new treatment even if this isn’t covered by the NHS. And if things go south, I can make some memories with my family whilst I still have the time. So seriously, thank you so much for all your donations and all your continued messages of support. I simply couldn’t do this without you. As I write this there are over 190 donations – I couldn’t possibly individually thank everybody although that’s what I’d like to do. But please know that every single donation is appreciated from the absolute depths of mine and my families hearts. 

I stopped my steroids last weekend as advised my Professor D’urso. But a few days after stopping, my symptoms came creeping back in. The dull but constant headache was back for days,  the dizziness, pressure behind my eyes and pulsating in my ears. So I’ve had to resume taking the steroids under advice from the gp until I can get in touch with my neuro oncology team to see what they say. My full symptoms are still at bay, I haven’t had any leg parasthesia, the sharp pains in my head, major visual disturbances or nausea that I was getting so commonly before which is amazing but I’d rather just stay as comfortable as possible until surgery and wasn’t experiencing any major side effects from the steroids so back on them I go. I felt better the same evening! Perfect! I have a pre op on Tuesday so will see them then if I can’t get in touch with them before via telephone/email. 

I’ve also done a bit of retail therapy this week. Anything to keep myself busy eh? And had a lot of lunches out. This lady of leisure lifestyle is something I’m not quite used to. And it’s rather inconvenient that Salford Royal is so close to the Trafford Centre that you feel obliged to go in each time 😂 my whole family and even some friends have ordered a jumper from Scamp and Dude to wear on surgery day – so Nev is rinsing everyone’s bank accounts at this point. He’s so annoying honestly. Scamp and Dude was set up after the founder endured emergency brain surgery and spent a lengthy time away from her children. They donate a lot of clothing, head scarves and teddies for children and adults suffering from brain conditions and cancers. Have I told you this? I feel like I have. We will blame Nev again for that I reckon. It’s most definitely his fault. But check them out if you’re not familiar with them. I’ve become obsessed with them over these last few weeks ⚡️

I also had some good phone calls today. One exciting one and one that eased my anxieties in an instant. Shall we start with exciting? So the BBC called because I’m posh now. North West Tonight to be more specific and they’re sending a reporter round to the house on Wednesday. I best get cleaning up 😂. They’re going to help me raise awareness of the importance of regular eye tests. Which is incredible. If I can get a couple more people to prioritise regular eye tests like you do the dentist – then I have made a positive impact out of this crap situation. I really feel like that’s why this tumour was sent to me. To help others. To raise awareness. My other phone all was from Professor D’urso himself. He rung as I had some questions regarding whether I do this surgery awake or under GA. It’s been CONSUMING me trying to make this decision. It’s been the hardest decision of my life. I told him this. I asked what the benefits are and why it’s being recommended. I was coming round to the idea that I just need to be brave and listen to him. When he said to me – I can feel that this is stressing you out. I don’t want this to consume you for the next 12 days. I want you to have quality of life. Enjoy yourself. He said that he has been very honest with me from the start and will continue to be. He said if doing it awake would have a big positive impact on the surgery, then he would tell me. But that where my tumour is, it won’t make much difference – they just offer this to everyone as an option. He asked if I wanted him to make the decision for me. I think he sensed I just couldn’t make it. I said yes. He said let’s go for GA. The relief I felt was ASTOUNDING. I didn’t realise how much having to make that decision was affecting me. But we’ve agreed on GA now and I feel so much better. There’s something about hearing and feeling my skull be drilled open that I just don’t fancy. So to know I won’t have to experience that now is amazing. Saved me some trauma there! 

And we have loads of fun stuff planned as a family this weekend. We’re heading to mums tomorrow to celebrate my sisters birthday a bit early as I’ll miss it with my surgery 😩 so this way we can still all celebrate as a family which is awesome. Then willows having a friend to sleepover and Sunday we’re spending some of FIFI. We’re heading to the Jurassic world experience and are going to let the babes choose a toy from the toy shop each as a special treat. Did you know that if you’ve got a brain tumour you don’t need to pay for the Jurassic world experience and that someone else can come as my carer. What a perk! So we’ve only had to pay for the babies 😂 I’d rather pay the full whack and not have Nev, let’s be honest. But that’s not what fate has given me is it. So let’s take the wins where we can. I’m glad I didn’t fork out for this in the summer holidays now! 

Have a gorgeous weekend everyone. 

Lots of love, Jen and Nev 🧠👁️⚡️

https://gofund.me/1d2da3d9