Why It’s Over for Everyone Else but Just the Start for Me

Whilst it might be over for everyone else, I’ve realised it’s just beginning for me. I’ve received some of the sweetest messages and gifts and I’m so overwhelmed with the love and support but ultimately, people just care that you’re alive and well, and then they move on. Some of my closest friends messaged my mom straight after my surgery saying “you must be so relieved it’s all over.” I don’t know what they mean by 'all over'. Yes, the tumour is removed and I no longer worry about the ticking time bomb in my head, but in many ways the hardest part is right now.

I seem fine because I’m posting on social media and I’m still living. But if you ask the people around me they would probably argue differently. My housemates wouldn’t say I’m 100% knowing they recently left work early to take me down the road because I couldn’t walk it on my own. My best friends know I continue to go out but only if it’s close to the house or if there’s a car involved because I constantly seem drunk. They also know I get wobblier the more tired I get and that I no longer put myself in situations where I can’t nap or leave if I need to.

The people around me know that I’ve been struggling with feeling sick and dizzy for days, that I’m fed up with resting and that I wear an eyepatch at night because my right side doesn’t close at all, not even to blink. But you wouldn’t get all that from a photo and yet that’s the beauty of social media; you never really know what a person is dealing with. I realise unless I say, people are understandably blissfully unaware and even though I am better everyday, I wouldn’t yet say it’s behind me.

I slept for most of the time that I was in hospital and when I wasn’t sleeping I couldn’t see to read or write. I was so exhausted that it seems like mostly a blur but I do remember being so happy and calm on the morning of my surgery and seeing the surgeons all laughing as I lay outside on the bed about to be taken in.

I called David Peterson outside the operating room and told him they all seemed happy before asking if he’d had a good night's sleep the night before, knowing he was about to open my head. He told me, whilst smiling, that they were always in a good mood and that he slept like a baby, before going back in. I remember thinking at that moment that there isn’t anyone else I would want doing this. I breathed deeply for literally a few moments before waking up in recovery eight hours later.

The moment after surgery changed everything and although I’m grateful in many ways for that now, I realised it wasn’t going to be as easy as I first thought. I was crying as soon as I woke up and told the nurse I couldn’t see. I was suffering from a bad case of nystagmus and my eyes were flickering so much when I first came around. The nurse stroked my hair and said “don’t cry, it’s just the anaesthetic but you’re over the worst of it.” I started panicking and telling them it wasn't the drugs, I really couldn’t see, and for what felt like ages no one believed me.

They finally wheeled me to the ICU and told my mom and sister that I was suffering some horrible side effects following the surgery, including facial paralysis in my right side, and to keep my eyes covered because it gave me a headache and wasn’t nice for them to look at. The good news was that the surgery went well and they hadn’t touched anything they shouldn’t have, so it is likely just nerve damage from being on my front for so long and the recovery time depends on the person.

Every cloud – Room with a view 

Tuesday 18th June 2019, Diary from the day before surgery:

Each moment shocks me. Sometimes I’m laughing with the doctors when I should probably be crying and vice versa. One of the doctors came to run through everything and get my consent. Apparently because of how deep in my ventricle the tumour is and because it’s right in the area that controls your balance and coordination, he said that is very likely to be affected and I could struggle for months, even balancing whilst sat on the edge of a bed without holding on. That should be fun.

The second doctor came, the one shaving my hair so I made sure to sweet talk him… Suddenly the scale hit me and when he left the room I had a very quick cry, a sip of water and admired the view… I wasn’t prepared for them to mark my head. I didn’t realise I would need around 8 different shaved patches over my head for them to stick the markers and although he did reassure me he would do the very minimum, seeing the razor was surreal.

I sat with a white towel around me as he fired it up for the first bit and it buzzed loudly in my ear, it sent shivers right through me. I had to desperately fight back tears. I’m sure he wouldn’t have minded but I didn’t want to seem superficial for some reason, crying over hair! It will grow back, I know, but the razor sound will probably haunt me for a long time.”

Journal from Tuesday 19th June

Although it was only a week in the hospital, it felt like that was my life and that I wasn’t getting out anytime soon. At first I couldn’t feed myself, wash myself or walk at all. My mom fed me whilst my sister read to me. A friend came to visit me on the Thursday and I remember telling him I could see two of him to which he joked “aren’t you lucky?!”.

On the third morning it got too much not being able to see. I was so scared that it was permanent, and I cried so much. The nurse was amazing, comforted me and brought me tea and biscuits which weirdly made everything okay temporarily. They took my catheter out of my bladder and my cannula from my hand so even though I was walking with assistance, I could use the toilet by myself. I was no longer in pain or having as much medication and I quickly discovered that the brain has no pain receptors. People constantly asked about my head, unsurprisingly, but that didn’t hurt at all, it was everything else. My Stepdad wheeled me outside in the afternoon. I had my eyes shut but the fresh air after days inside was heaven and he later told me he was proud of me.

Walking with assistance, but it was amazing to be out of bed

Scar at 4 weeks

On day five the occupational therapist came and asked me simple things like to join the dots and draw a clock. I got it wrong but blamed my eyesight and not seeing so they took me to the opticians and gave me a prism – a ribbed, rubber insert that makes everything single whenever I wear my glasses. I wasn’t used to wearing glasses so it was a big adjustment but the prism is so clever and although I wouldn’t want double vision forever, I can see whilst wearing it which is incredible.

It was amazing being told I could go home but for a few weeks I didn’t sleep with the door shut, couldn’t wash my own hair or do things for myself. I struggled at first because even though I knew being tumour free was incredible, not having my independence was a challenge. It has been seven weeks since my surgery and, although it’s a slow process, my eyes no longer flicker as much as they first did, my right side is much less drooped than it was now that the swelling has gone and the gross motor skills in my right side continue to improve the more I use them, which is promising.

Tried to document what I could remember on the sixth day but apparently this happens when you don’t write for a few days. Who knew?

They said it could take 6-9 months for the nerve damage to heal and whilst it seems like a lifetime waiting now, I do know I’ll look back on this and in the grand scheme of things it won’t seem like a long time at all. Although I was physically better before, it was just a matter of time. Even though I don’t feel better off at the minute and I struggle with things I didn’t struggle with before, I used to have a growing tumour, one that had the potential to shorten my life and make me incredibly poorly. It’s a matter of patience and resting but I’ve realised I am better off now. I’m healthy, which I wasn’t before, and I can finally focus on the next chapter.