I had a positive start to this week. I was getting my positivity back, getting my appetite back, getting my energy back. Yes, this all still loomed over me and I never awoke from this nightmare I now live in, but I was functioning well. I was managing to do the school runs, cook the tea, make the packed lunches, get myself out of the house with friends and family. Normal stuff. And it felt nice. I didn’t feel as useless. As much of a burden or a charity case. I was being congratulated for eating pizza for breakfast for God sake. It was nice. I felt like Oll was settling back into normal life too, he spent some time with his friends, felt more comfortable leaving me with the kids, got back into the swing of his work. It felt like we got some normality back in a totally abnormal world that is now ours. 

Yes my life is weird now. I spend my evenings researching craniotomies until I feel sick, and when I’m up with steroid insomnia I spell rude words with my friends on scrabble at 3am and we get a giggle out of winning 20 points spelling ‘boobies’ or ‘arses’. In the day time whilst the babies are at school, I try and stay productive. I have a lot of life admin that needs taking care of which I’m thankful I can still do for myself. Life admin which now includes things like surrendering my driving licence, applying for  PIP, signing up for regular prescriptions and other things to help keep life normal like disability rail cards to keep me being able to get around. It’s felt so strange but I really have to take all the help I can get to get us through this hard time in our lives. It won’t be forever and I’ve been a tax payer my whole life – my pride has taken a hit but what else can I do! 

Then yesterday hits. Me and Oll go to Salford Royal for our appointment with Professor D’urso to discuss the next steps. I wait in the same waiting room I sat in over a year ago when I was presenting with my neuro symptoms. When I wish I was listened to. When this tumour was most likely benign and curable. I was told hormonal headaches and discharged without any investigations. I wish I’d have pushed for something more now. I wish I’d have laid it on thicker with that doctor and asked for a brain scan. But I didn’t. And hindsight is a wonderful thing. I will regret that for the rest of my life now. After all, it won’t be a cancerous brain tumour will it?! I’m only 30! 

Professor D’urso is not the consultant I saw over a year ago in neurology at Salford Royal. I’m thankfully under a new team and I have every faith in him. Oll met him for the first time time yesterday and feels the same too. He’s calm, he’s calculated, he’s professional, he’s empathetic, he’s honest and he’s a bloomin consultant neurosurgeon! One of the best in the country. He sat us down and started off my showing us the scans of my brain. We look at them with absolutely no prior knowledge of anything to do with MRI’s, CT’s or brains – but we look at them and think – oh shit. Half of my brain is glowing white on these images. It’s very obvious to see, even from someone with no knowledge in this area, that the images are abnormal. That they reveal a big problem. The only thing linking me to these images is my name on the report. It still doesn’t feel like me. That can’t be my brain surely! 

We go through the potentials of what this tumour is first. So it’s a Glioma of some kind. Either an Astrocytoma which has four stages or an Oligodendroglioma which has three stages. The consultant was straight with us – what I have is not a stage one of anything. A stage one would be the case of a benign tumour, which he would remove all of it and it would be cured. Unfortunately we are past that stage now in my case due to how long it has been there. So we are at least looking at stage 2. Potentially 3 or 4. This is something we won’t know until Nev is biopsied. It is ten days for biopsy results to tell the type of Glioma and then a further 2-4 weeks to stage it. It will only be then that we fully know what we’re dealing with here. Best case scenario looks at a stage 2 Oligodendroglioma which responds to chemo and radiotherapy well – this gives me 10+ years of life. Worst case looks at a stage 4 astrocytoma that doesn’t respond well to chemo and radiotherapy – this looks at a life expectancy of within 3 years. They are hopeful to remove 80-90% of this tumour during the craniotomy but will not be able to get the whole thing due to its location and the risks involved. So part of it will always be hitching a ride with me. Rude. This small part will always continue to grow – that could be super slowly over a 20 year period or this could be quickly over a few months. Only time and more MRI’s will tell. But we will be keeping an eye on this for the rest of my life and reevaluating treatment as we go. Chemo and radiotherapy will attack the edges of what is left of the tumour to stabilise it and try to stop it growing. This can start a few weeks after surgery. 

So I had a few options and some decisions to make. 

1. I have Nev biopsied first through keyhole – see what it is and then decide where we go from there based on the type and grade. 
2. I start chemo and radiotherapy straight away regardless of what it is to try and stop Nev from growing and developing into anything worse. 
3. I watch and wait – essentially do nothing and just plod along with regular MRI’s to see what Nev is doing and what my symptoms do. 
4. The craniotomy – we ‘debulk’ Nev as much as we can. And then we start chemo and radiotherapy to stabilise what is left of him. 

Number 4 is what is recommended to me by the team. And number 4 is what I have chosen to go ahead with. It is the most aggressive option, but I have my age and strength on my side, so I feel I need to attack this with all that I have, whilst I can. My consultant is happy to do this surgery whilst I am awake or under general anaesthetic. I can choose. Often there are benefits to doing it awake but this depends on the location of the tumour. Where my tumour is – there are no real benefits of doing it awake. It will not mean they can take more tumour and it will not mean my recovery is any better. It essentially just means that they can check on my brain function before I come round from the GA as a pose to after. If I was to choose to be awake, I will be awake for the whole four hour procedure. I will not feel any pain but the rest of my senses will be there. I will be able to hear and feel the vibrations as they make their way through my skull to my brain and I will be able to hear and smell what they are doing – neither of which I feel particularly good about. If there was a big benefit to doing it awake then I would just say to myself ‘put your big girl pants on and be brave’. But for now I’m leaning heavily towards a general anaesthetic to reduce the trauma of awake surgery. I feel I’ve been through enough recently and will continue to go through a lot over the next year – so I wish to minimise trauma where I can. And I feel this is an area I could do that. I can change my mind at any point up until the day of surgery. So no rush to decide right now – the answer will come to me. 

Provisionally, the craniotomy is booked for the 9th October in the afternoon. It will be the second craniotomy that day. Which is wild. But this could change due to emergency cases. I have to remain thankful that I am not one of those emergency cases. With this date in mind and the wait we face afterward to reveal exactly what Nev is – we realistically look at November before we know much more. That’s just the way it is. So I just need to keep busy and resume as much of a normal life as I can until then. 

There are risks associated with this surgery that were really tough to hear. But there’s risks with any surgery isn’t there. This is just brain surgery, so the risks sound scarier – more life changing. And I know that the team are obliged to tell me these. It’s their job. I won’t go through them because there’s no point. We won’t speak them into existence right now. 

The probable side effects post surgery are some memory loss and personality changes which usually resolve within a few months. This is likely to be emotional and behavioural due to the location of the tumour. But we won’t know until after – and we will deal with that then. I could just as likely wake up the exact same if all goes well throughout surgery. I would then be discharged within 1-2 days and recover at home with my family. 

We were assigned two neuro oncology key workers – Chantelle and June. They will be there to support us throughout this journey. I can ring them anytime with my questions alongside the consultant and his secretary who are also available throughout this journey. We were handed plenty of leaflets – which I haven’t got round to reading just yet. And we were given the time to ask the rest of our questions. We then shook Professor D’urso’s hand and we left. For date night remember? 

As far as date nights go – i hope it was the worst one we will ever have. Neither of us could stomach our dinner – I don’t know why I thought we would be hungry! We held each others hands over the dinner table as we held back our tears and we cried the whole way home. It was crap. It was overwhelming. It was scary. We wandered around the Trafford centre before dinner doing a bit of shopping (I made another fuck it purchase ) and I just couldn’t help but look at people and think – you really never know what anyone is going through do you? Most of these people wandering about doing some shopping at the Trafford centre on a Tuesday night – do you realise how much of a blessing it is to be able to do that?! How lucky you are?! This has brought such a huge shift in our perspectives on life and if anything comes from this blog I would love to convey some of that. Please live yours lives to the fullest. Please don’t sweat the small stuff. Please appreciate the special people in your life. You have absolutely no idea what tomorrow holds. 

So I struggled to convey all of that last night. As I’m sure you understand. It’s a lot right? I’ve spent today in bed being kind to myself and taking it easy – with plenty of cuddles from Oll who I feel like has gone back to square one of absolutely not knowing what to do with me and what to do with life. It feels like we’ve been knocked back to the darkness of diagnosis day. But we will have these peaks and troughs. This is just a trough as we’ve been slapped in the face with it all again. But we will rise once again. Because that’s what we do. We’re strong, and we’ve got this. 

Thank you again for everyone’s thoughts and prayers. We feel each and every one. It really helps my mind to write these blogs and post it on the page. I appreciate all your comments and I enjoy to open Facebook and read them when I have the strength to do so. Personal messages for now are something I don’t have the strength to reply to. I’m sure with time, that will change but for now I’m sure you understand and hope these blogs will be enough. 

Love Jen and Nev x