A lot happens in such a short space of time on this journey. My sutures have been removed now – that was an experience. To have them pulled out of your head as you lay on a bed in the GP surgery definitely makes you remember that you’ve actually had your head and skull cut open, with people diving around your brain 😩 it was one of those moments where even as a 30 year old woman, I asked my mum to hold my hand. And I didn’t let go until it was over. Thank god for my mum, what on earth would I have done without her on this journey.

I ended up going back to the GP a couple of days later as they weren’t happy with some areas of the incision and wanted to check for infection. When I went back, they were happy it was healing okay, so no antibiotics for me! I don’t know I could cope with anymore tablets than I’m already on, so that’s good! Now I can wash my hair every other day – which feels strange after being told everyday for the last few weeks! So I can take those daily baths out of my routine now and go back to a bit more of a normal schedule. A bit more normal feels good. it’s a step in the right direction at least.

I also had my first appointment come through from the big bad Christie. Which made me wobble a bit. There’s just something scary about the Christie and I don’t even know what it is. Well, it’s the cancer isn’t it. The fact that it’s so busy and it’s all cancer. And everyone looks poorly. And there’s a wig shop. It’s just not somewhere I wanted to have an appointment at. Ever. When the poor nurse at my GP asked me what I was doing for the rest of the day after she checked my incision and I told her I had my first apt at the Christie, I had a little cry on her. She rubbed my leg and consoled me as I lost my shit – told me YOU’VE GOT THIS and that yes this is all massively rubbish but reminded me I can in fact do this! That was nice – every single medical professional I’ve come across on this journey literally has just been amazing. The NHS is so incredible and I’m so lucky to be getting this life saving treatment and aftercare for free. These people are angels – the team I’ve had at Salford Royal have been great and now the nurse at my GP and just everyone in between on the wards I’ve stayed on. They will never know what a difference they make in peoples lives on a daily basis but I for one, am so grateful to them. I will make sure I send a thank you card their way as I have done to everyone so far on this journey who has helped me. I know how much it means to receive one, and I desperately want to get back onto my path of positivity. So practising my gratitude is something I need to get back to. That can be this weekends job. To write some thank you cards.

Back to the big, bad Christie. Oll had the pleasure of taking me for this appointment. I keep going for appointments and forgetting exactly what had been said, then I get home and Oll has lots of questions which I find hard to answer. So we thought it’s best if we get the babies looked after for this one and he comes along. We both sat in the waiting room and felt SICK. It just really isn’t somewhere you want to sit as a pair of 30 year olds, with two young children. But here we were. Life is wild. We had gone out for lunch before our Christie date, which was nice. Anything to take your mind off life for five minutes is absolutely worth it at the minute. That’s where we’re at 😂

It started with my height and weight – and we laughed at how much weight I’ve put on since surgery just two weeks ago 😂. When I say my appetite has been wild, I really mean it! And it was wild before! But these steroids have done something crazy to me. I’m a bottomless PIT. CONSTANTLY. My face is so spherical it’s an actual joke. And I just cannot get full. The total opposite problem to what I had in the beginning when I couldn’t stomach anything! I actually stopped the steroids on Monday as per my plan – so maybe this chipmunk face might disappear soon and I can get back to a healthier diet. That would be nice – and will aid my recovery. So let’s manifest that – ‘The steroids will leave my system and allow me to live a healthier existence to help me through what is next’.

So we sat in a clinic room at the Christie now that we have been transferred to this team from our team at Salford royal. New doctors and nurses now support me through this next stage. We discussed my options. We have three. The first one is combined radio and chemo. This is the most aggressive option. And this is what they recommend for me based on my age and the characteristics of my tumour as it has 3 out of 3 high risk features for a grade 2 Astrocytoma 🙄 of course it bloody does! Nev wouldn’t just be a straight forward brain tumour would he! Rude.

Option two is chemo on its own to avoid the side effects of radiotherapy. BUT the side effects of radio are reducing brain function and cognition (in rare cases) – I’ve just had major brain surgery! So I feel this is less of a worry for me 😂 or at least something I’ve already dealt with as something that may happen – so I’m not too bothered about that.

Option three is something called Vorasidenib. Which is relatively new although FDA approved and ready to go! It is tablets, that would slow the growth of what remains of Nev. This is approved for use post surgery, so this is available in my case. However with it being quite new, the research is limited and it has only been compared with low grade gliomas with low risk features in comparison to doing nothing (watch and wait).

So I have decided to go with option 1. I think I always had decided I would do this anyway. But now at least I know a bit more about it and what it entails which feels good. I just feel I need to attack the rest of Nev as aggressively as I can whilst I have the strength to do so. I have too much to lose to do anything else. the nature of Nev is that he will always grow and he will always advance through the stages as he grows – that’s just what they do. So the reality of that is that he goes from the grade 2 that he is now, to grade 3 which is faster growing and eventually to grade 4 which is cancerous. All I can do is slow this progress as he isn’t curable and what is left of him now is inoperable. So option 1 has the most research behind it, we know it works and it gives me the most years. It also means that once I have done the radio and chemo, they anticipate it would be several years before needing further treatment which may be further radio, chemo or surgery. So that gives me more normal years of life where I’m not spending it off work and in hospital and not driving. It would give me my life back a bit! So that’s my choice. Radiotherapy for 6 weeks (5 days per week) once I’m 6 weeks post op. Then a 4 week break followed by 6 months of chemotherapy which will be tablets from home 5 days per week. Doing the tablets option will save me from being at the Christie for IV treatment and gives me a bit more normal life back as I can just do this from home and even work through the chemo they said – as the side effects are kinder with the tablets in comparison to IV.

So that’s what the rest of 2024 and the first bit of 2025 holds for me! Let’s stunt Nevs growth as much as we can and get some normal life back for me and my family!

Lots of love from Jen and Nev 🧠👁️⚡️