So I had my wobble at the beginning of the week, me and Oll both did. When re faced with all of the news, facts, risks and potential prognosis’ at our appointment on Tuesday it very much felt doom and gloom. It felt like the end of our world again. I felt like the normality of life that I crave back so much was so far away. That this still had potential to take me from my babies. I felt so guilty for putting everyone through this. Through this really tough time in all of our lives. I’ve STILL not woken up from this nightmare but surely enough is enough now? 

We allowed ourselves to wallow a bit. To have those feelings and to cope with them in a way that felt natural to us. All we can do is be led by our feelings now and just go with what feels right. Because we have no clue what we’re doing and how to cope with this?! Does anyone?! Even with all the macmillan brain tumour guides I now have been given! They must have forgotten to give me the one that tells me exactly what to do to make this all disappear! 

I’m on a few forums and support groups for people with brain tumours. They’re filled with tips, tricks, success stories and they help massively. It’s a forum I never thought I’d be in, but these are the cards I’ve been dealt aren’t they and that’s the top and bottom of it. I’m part of this niche little community now. There’s been a few people who have gone through similar things to me too. They’ve got in touch or allowed me to get in touch with them. We talk things through and they let me ask my questions, voice my fears and tell me their side of the story. What happened to them. They’re all on the other side now. And they’re all rooting for me. It’s a special special bunch of people who are giving me so much hope that this is possible. I can beat this like them. I very much hope to be giving my advice to someone in a couple of years time and telling them too that it will all be okay. I survived mine too – and I’m now watching my children grow. 

Our positivity is creeping back in since the beginning of the week. And I’m so glad. It’s just not really in me to be too negative for too long. That will help me so much now I have this journey to face. I knew my stubborn qualities would come in use some day! I’ve had some gorgeous visitors, messages, phone calls to keep me busy and me and Oll have managed a laugh or two. And overall I’m still feeling okay. I’m getting used to the tablets now so the side effects are a bit easier to manage which means I can still enjoy myself and live a normal ish life until surgery. That’s important. And I’m so lucky I can do that. 

My medication is keeping the vast majority of my symptoms at bay completely. Which is great. What they did tell me though which was scary, was that everytime I had one of these two minute neuro ‘episodes’ where I’d have all the symptoms. These were seizures. They said a seizure isn’t always what you imagine when someone says the word seizure. There’s kind of a spectrum. So I don’t lose full consciousness with any of mine – leading me to never think it was a seizure at all. But I’ve been seizing for over 18 months now. And just carrying on with life. I’d have them in the car and just pull over before they got too bad. I’d have them at work multiple times and just sit down until they passed, I’d have them in the shops and then drove home afterwards. What the hell?! I’ve been very lucky to safely manage those over the last 18months. 

I had a psychological assessment this week too, where they got to know me better and assessed if I would be appropriate for awake surgery if that’s what I choose to do. We discussed what makes me, me. What is important to me in my life? These parts of my brain can then be prioritised in surgery. They will aim to save as much as they can of ‘me’. Some change is inevitable – hopefully temporary though. Oll jokes that maybe when I come round from surgery I’ll be a super loving wife… he won’t be that lucky will he?! Come on now 😂 Maybe this is the perfect time for a personality change? I’ll order some extra intelligence and ask them to make me really hilarious whilst they’re in there? Or turn up my patience a bit more when the babies are stressing me out?! 

I did some tests based on the area of the brain that my tumour affects the most. And I was astounded at how spot on they were. I was shown lots of sets of eyes and had to state which emotion they portrayed. Some were easy – happy, sad – I know those ones! I’m not stupid! But some of them I looked at for a good few minutes and couldn’t for the life of me figure it out! It was strange – it was the first time I felt like I realised that actually this was affecting my cognition. I tried my best, but even with the on screen multiple choice options of which emotion it was – I couldn’t figure it out on some of them. And I was concentrating so hard! I felt so embarrassed that my brain couldn’t compute that. So far every test they’ve done on me has been easy – but this one wasn’t. They had figured out exactly which area it was affecting.  Emotional and social recognition. There was no pressure to get the answers right, they just need a baseline of how I’m coping I guess. Afterwards, the neuro psychologist said I had a really hard time recognising fear correctly as an emotion on someone’s face. I got it confused with other emotions instead. She said this is expected due to the location of my tumour – this makes sense. I then had to state objects on a screen as they changed quite quickly whilst doing an excersize with my left hand to multitask the brain. This one I found absolutely fine. But I’m a woman – and we multitask really well right? We’re just good at that. As for the fear thing – my dad tells me I’m just fearless and that’s why I can’t recognise it ❤️ it doesn’t exist for me, because we’re stubborn – that’s just the way he made me. 

The psychologist apt overall was a positive one. I came out of there feeling less anxious about the prospect of awake surgery. The psychologist (Jacki) would be there with me in surgery, she would hold my hand, chat to me, distract me and perform these same tests again to check my brain function stays similar at the same time the surgeon removes tumour. It’s a crazy concept. And still one I’m not sure I’ll take them up on. But i do feel better about it. It’s still not my favourite idea in the world. I’d much rather still be going to see Grease lightning as planned at the Palace on the 9th instead of open brain surgery. But we’ve postponed that for now 😂. I need to prioritise this apparently. 

We discussed that the experience I have working in theatres for c sections is making it more difficult for me to justify staying awake for my surgery. Because I’m comparing the two. But they’re entirely different. But then equally I know what happens in a theatre environment, I know the sounds, the smells, the anxieties that people face when awake in a theatre room. These things are having an effect on my decision. And that’s ok. But elective brain surgery and an emergency c section are polar opposite surgeries – I obviously am aware of that 😂 but my brain is making connections and causing me this anxiety that usually isn’t a factor in other patients with no medical background. I’m just being awkward basically. We also went through how the rest of the family are coping, we discussed the struggles Oll has been having, how everybody is sleeping, what we’re doing to keep making sure each other is ok etc and she advised me on what to say to the children at this stage. We discussed that willow is having a hard time. she has regressed at bedtime and in her behaviour in general. She reassured me this is normal, it’s primal, coming from deep down because she worried about her mummy. She gave me some tips on how to deal with this as a parent in a way where Willow would feel safe. She said that at times of separation she will struggle at the moment – like school drop off and bed time. This is exactly what she is doing. She said allow her to take a comfort from home into school with her and then as for bed time – just lay with her until she falls asleep. This will be temporary but at the moment it’s just what she needs to help her feel safe and secure. So we’ve gone back to laying next to her in bed until she falls asleep and then creeping away – it brings back memories of doing this when she was little. Bottom line is that I’ll do anything in my power to ease this pain for her. This pain I am causing her. After all I’m inadvertently dragging her through a journey that no 7 year old deserves to have to go through. We also had a further chat as Jacki felt she maybe needed some further information on what was going on. I spoke to Willow about how maybe she has noticed things are a bit funny at home at the moment. How mummy hasn’t been going to work, or driving anywhere. That she’s spent much more time resting than usual and we’ve had lots of visitors. Mummy will be having an operation in a few weeks to take a lump from her head and that’s why this is all happening. I reiterated it’s nothing she has done, and it’s nothing that will make her feel poorly too. I encouraged her to ask questions and voice her worries to any of her safe people. I have to trust that this is enough for now and that she will talk to me if she wants to. For now we will ride this sassy behaviour that’s she’s giving me instead and the two hours it now takes to settle her for bed. The joys of 7 year old girls hey 😂

My picture for the end of this one is of big Nev himself. I was weird and requested a picture of him. The doctor said he’s never been asked that before 😂 It’s not a nice image obviously – but take a scroll down if you’re curious and weird like me. He’s massive. And he’s out stayed his welcome now. Does he not know anything about consent? It’s really not on to just start growing in someone’s head without asking first 🙄 

Love Jen and Nev x