As I approach two weeks post surgery – I feel like it’s gone so quickly. But at the same time, SUPER slow. It’s been 5 days since getting the biopsy results and having time for that to sink in has actually been really tough for me. I’ve been struggling with recovery too. My mind feels ‘mostly’ fine but my body is just so weak, tired and DONE. Plus these steroids I’m on have me looking like a CHIPMUNK, I can’t stop eating and I can’t sleep. But they’re great for the pain and the pressure. It’s all just a bit crap I’m not going to lie. 

I attended another women’s circle tonight which was incredible again. For different reasons this time. I got something different from it tonight which is good. But it made me realise how I have been feeling recently. I think when I had a date for surgery, I had something to work towards and focus on. And that helped me. So I was able to stay more positive. Now – even though I have been given such great biopsy results. I feel like I’m being told I should now feel so amazing. But I don’t exactly feel that way. I feel scared for chemo, scared for radio therapy, scared for the rest of this journey that I have ahead of me. So much is still unknown. I still have 20% of my brain tumour which is inoperable. And that’s crap. At 30, with two kids. That wasn’t and still isn’t my life plan. But I have to move forward on this path – whatever that is. And everyone is right – I have so much to be thankful for. My biopsy results could have been so much worse and I totally appreciate that. But I’m still on this completely crap journey. So I’m a bit woe is me at the moment. And I think it’s important to admit that. It won’t all be plain sailing everyday – I’m prepared for that. But then, how am I supposed to feel and act? I’m just not sure I know the answer to that at the minute. 

I’m struggling with my lack of independence. Overnight I had my job, car, health and future taken away from me. And that’s not easy. Now my body is just so DONE from surgery. I’m struggling to even do a school run and make a packed lunch. And that makes me feel AWFUL. I also feel like I’m so snappy with everyone who is helping me the most. This also makes me feel AWFUL. But it’s part of the process. I’ve had major brain surgery and sometimes I think I’m forgetting that. But when my mind feels sound – it’s kind of easy to forget. It’s just my body that is struggling. I’ve never felt so fatigued in all my life. It’s so overwhelming. 

I’m very aware that I’ve never been this negative on this journey so far. How could I be feeling more positive BEFORE my great biopsy results when they could have come back as anything?! It makes no sense. Now I know I have more time and a slow growing, non cancerous tumour and somehow I feel worse? Maybe worse isn’t right, but just confused maybe? Unsure of how I feel and what is the right way to deal with this. 

Of course I’m happy. My future is MUCH brighter than it has been over the past 6 weeks. But still, how is this happening to me?! Chemo and radiotherapy?! Thats the plan for me now? And I just have no say in it? 

Can I at least know when?! Hopefully I will have an appointment at Salford this week to clear these things up. I guess maybe I’m just in limbo at the minute. And I hate limbo. Remember, I’m stubborn and a bit dramatic! 

In lighter news, I went to see a friend in a theatre production this week that absolutely SHOOK me. I always try to go and watch her in all that she performs in – because she’s amazing. But this performance just so happened to be about a brain tumour diagnosis. What a coincidence?! How did that happen?! Before my diagnosis, I knew no one with a brain tumour – now they’re everywhere in my life! Popping up even when I’m trying to relax and watch my friend in a show! There were lots of triggering parts for me (especially those MRI noises which I think will just haunt me forever now) but she portrayed diagnosis and treatment so well. And I honestly just can’t thank her enough for that. It’s a huge thing to have to go through, and none of that was overlooked in her performance. I felt so lucky to have been able to watch her in this play. I’ll forever be thankful for how she used her acting skills to do that. She then, in turn supported me at womens circle tonight. I am so blessed to have such great friends to help guide me through this. And support me in alternative ways like that. Just incredible. 

Also, I’ve been washing my hair EVERYDAY. I even do it myself now 😂. I sat in a brain surgery recovery clinic last week when I needed to discuss some post surgery symptoms. And as I looked around, the difference in everyone’s scars is ASTOUNDING. Especially considering we all had the same surgery. It ranges from full shaved heads and staples from ear to ear, to mine, where there’s not a single hair shaved. There’s a 4cm ish incision and maybe 5 sutures to remove. It doesn’t even look like I’ve had any surgery at all! I made a deal with my consultant that we wouldn’t scare my babies with my scars. He told me if I wash my hair everyday, then he will do everything he can to make sure they can’t see anything and aren’t scared. And he really delivered on that front! Stitches out on Wednesday for me – which feels like a big step! It will be nice not to have big, spikey, blue sutures poking out of the top of my head! But again, I should be so grateful for the way it is so concealed considering how it could have been! How it could have looked! Yet I feel conflicted – again. Why am I feeling like this?! I have so much to be thankful for. And I’ve been telling everyone all along how they should be more grateful for life and appreciate the small things. Now I’m not practising what I preach AT ALL am I. 

Each day, my body is feeling stronger at the minute. I’m able to do more things for myself. The stairs at home are less scary now. The bath and hair washing situation is getting easier too. Which is nice. I don’t think my friends have ever seen so much nudity from me as they have over these past two weeks whilst they supervise my bath times and massage shampoo into my hair for me ❤️ I appreciate them so much. It will be nice to have unaccompanied wash times soon though – once it’s a bit safer. 

So, a negative one from me tonight! Hopefully the last negative one! Because I hate to feel this way. But wish to keep it real at the same time. 

All I can hope for now is little improvements each day to bring me closer to getting back to my former self. Getting back to driving, and working and looking after my babies. I will get there. I know that. It’s just taking longer than I expected. Because I’m impatient! But I’ll get there. Nev will never beat me, especially now that he’s 80% gone! 

Lots of love, Jen and Nev 🧠👁️⚡️