New Year, No Tumour

It has been some time since I last sat at my keyboard writing a blog post, having been around 6 months since I wanted to sit and write something for the sake of writing. As of this week I will firmly be in my 8th month of chemotherapy out of 12, and it is only recently with the decrease in my prescription have I felt the urge and motivation to do anything at all. I was determined to enter the new year – the new decade – with a ‘This will be THE year’ mantra that started strong with another clear and stable MRI scan, but naturally the facade began to crumble and the days felt like they were fleeting from me. 

Already this year I’ve made some great memories and acquired some new friends (God knows I need them), but it has been a month of contemplation and deep thinking sessions in the shower. It was this time last year I was told my tumour had regrown and my neurosurgeon pulled his diary out to book me in for another craniotomy; it was this time last year I embarked on the most tiresome journey imaginable, and partially overcame a fear of needles that still haunts me to this day. Generally speaking, I’ve been fighting for a year now. The last 8 months in particular have proven to be some of the most testing months that at times I genuinely felt had got the best of me. I’d like to think my prompt return to writing is a statement that they did not. 

Since June 20th, I have been in what I hope is the last ever part of beating a brain tumour: oral chemotherapy. A somewhat nicer alternative to it’s IV counterpart, I have been taking the drug ‘temozolomide’ along with a concoction of antisickness medication in hopes of eliminating my tumour for good (spoiler alert: it’s working!). Upon completing the debacle of freezing my eggs, I naively began my chemotherapy treatment severely underestimating how horrible the first month would be. The first two days of my treatment I felt completely fine, no one need know I was taking medication, but as the third day rolled around I was retching into the toilet bowl and on my way to A&E to ensure I hadn’t already developed sepsis. What followed was a gruesome week of not being able to keep down any food or drink, and it was like I was back at pre-diagnosis. The month of June – my birthday month – was not going to plan. I was now halfway through the year and simultaneously at the beginning of another and it hadn’t gone the way I expected, and I was worried for how the rest of the year would go. 

As the months continued, my care team took into account any side effects I experienced and we continued to tailor my treatment to minimise issues and maximise effectiveness. My chemotherapy dosage decreased and my antisickness increased until I was at a happy medium that let me live on as comfortably as possible. The side effects of chemotherapy still persisted, but at a much more tolerable level than I had experienced before; nausea subsided while fatigue continued, but over the course of time I began feeling somewhat uninspired. There are some side effects such as sickness or nausea you can fix by taking the correct medication, but the overall feeling of emotional fatigue is much harder to overcome. Chemotherapy may combat physical cancer cells (or any fast-reproducing cells such as hair cells, leaving my hair thinner than I’d like), but emotionally it can really sink it’s claws in you. The monthly routine of spending hours in London to collect the medication, the continual (yet minimised) side effects of treatment week, and the inability to go more than 20 minutes on my feet is emotionally draining. Chemotherapy puts you in limbo, in a third space separate from where you once were to where you want to be; I may not be as weak as I was following surgery, but I’m still not quite right enough to work or study like I wish I was. It’s hard to find a meaning in your life when it’s just appointment after blood test after MRI scan.

However, the emotional side effects can be helped by one thing: a support system. Having a care team who administer the correct medications is one thing, but being able to create relationships with my team was something I’d never really expected. From the oncologists, registrars, nurses, and receptionists there is an underlying pleasantry when entering the waiting room. Sure, all NHS workers are generally friendly but when you see the same few people each month it undoubtedly creates a mutual connection. Even down to the small things, like recognising my face and putting it to a name or seeing a handful of patients monthly makes an otherwise long day slightly more pleasant. Next comes the support from those who I love dearly: friends and family. It sounds like a cliché, but the support I have received from them all is sincerely what pushes me on to the next day and not give in to what could be a dark reality. Every day that I spent in hospital – be it Broomfield or NHNN – I always had an entourage of people by my side. I had my Mum, Dad, brother, sister (who at the time was in utero), Aunt, Uncles, Nans, Granddads, cousin, boyfriend, and extended family who all broke the ‘two visitors at a time’ ward rules daily. Early morning till the evening I was always surrounded by people who made the absolutely insane reality of recovering from brain surgery (let alone recovering at 19) something that felt like just another day. The continued support when I got home didn’t falter either: putting a bed downstairs to spare me the stairs; Mum helping me wash my hair to get the blood and iodine out; giving me my medication on time; and helping me build my strength back up. 

The emotional stress I was undergoing whether I felt it or not was undoubtedly immense, and once the steroid high had worn out I was left staring at the ceiling most nights unsure of what to do with myself. The continued support of friends or family allowed me to voice any thoughts I was mulling over for hours, whether it being an overall low mood or deciding if I wanted to return to university to work on neuropsychology. Weekly escapades and adventures with my best friend, Jess, allowed me to get out of the house and talk openly with another person about anything and everything I thought about. Be it a quick date to McDonalds or a trip to a Christmas fayre I was able to confide in someone who had a different perspective to my family, while simultaneously living what felt like a ‘normal’ life again. The overbearing emotional side effects that chemotherapy brought ceased to exist while I was out and about, even if it was just eating a burger in the company of a friend. The importance of a support system is for them to see and understand the fine line that I walk: wanting to live my life as if nothing has changed while comprehending that I do need help even if I stubbornly refuse it. 

Part of having this support system is understanding that my diagnosis reaches further than my left frontal lobe, it crashed it’s way into all our lives. What initially feels like the most isolating illness is broken down with each person you talk to, forming another connection that ironically branches out just like the astrocytes that malfunctioned. Perhaps poetically, the emotional side effects that plague patients throughout chemotherapy are fought with relationships that form faster and stronger than the cancer cells that attempt to overtake us.