Finding My Balance

By Sarah Cragg

As I write this, I'm 41 and it's been two years since my last brain surgery.

I was born in Kirikiriroa (Hamilton) but everyone else in my family was born in England - even my brother. With all my extended family in the UK, my immediate family, step-family and friends here are super important.

We moved to Ōtautahi (Christchurch) when I started high school. I attended Cashmere High School where I discovered a love of art, culture and old stuff. I have spent a lot of time at uni (University of Canterbury and Victoria University of Wellington), worked in the arts and education sectors, and also developed a love of travel. My big brag is that I used to live in the Cayman Islands (why not?).

I came back to New Zealand after the Christchurch earthquakes to be closer to my family, but it turned out that I would end up relying on them much more than I realised. I love my job, which is at a museum in Ōtautahi. I literally take photos of objects for a living.

Recovery isn’t linear

If you don’t have time to read my whole story, please just take note of this: recovery isn’t linear.

During the first Covid lockdown, I was calling my Mum on my cell phone every day. I noticed I was struggling to hear her on my left side. I put it down to too many gigs in my youth, but made sure I asked my GP about it once we changed Covid alert levels. His tests didn't show much, but I ended up asking again and was referred to an ENT (ear, nose and throat specialist), who wanted to do more investigating.

After a CT scan and a comprehensive hearing test, the follow up with my ENT took an odd turn. The hearing test showed poor speech discrimination (my brain wasn't understanding the words) on my left side. He advised we do an MRI "just in case". He was lovely, but this wasn't exactly what I was expecting. My family and I decided I would no longer go to appointments by myself!

Mum dutifully took me to my MRI. For me, the MRI experience wasn't so bad, I just did relaxation breathing (thanks yoga) and pretended I was an astronaut. My ENT called me after my MRI to explain that I had a mass in my brain, behind my left ear, that was probably a benign meningioma. His plan was to refer me to the best neurosurgeon he knew.

This happened on 26 November 2020. I had family and friends start to do bits of research for me, but I asked them to only tell me the practical and the good news. And, assuming this was a meningioma, it was the best of a bad bunch. The trick is managing any damage it does.

My neurosurgeon was great and explained, as nicely as possible, that he couldn't simply remove my tumour because it was all wound up and growing towards some of my cranial nerves (thus affecting hearing, balance and, potentially, swallowing). So if he just removed it, I'd lose all function immediately. A partial resection was the suggested option. There were risks, but I wanted it done.

Looking at the MRI images was surreal. The tumour was the size of a large mandarin and was clearly pushing my brain stem off-centre. I was also off-centre – my balance was affected.

My neurosurgeon would perform my resection (think pruning) in January 2021. He suggested seeing a speech and language therapist to have a swallowing baseline test done in case my swallowing function was damaged in the surgery. How many specialists can you have?

2020 was tough for a lot of people, but I definitely felt shell-shocked. Christmas was hard - by this stage I was having terrible headaches, fatigue, tinnitus and using all the tools I knew to manage my anxiety (mantras and naps were the best). I had also reduced my work hours and started medication to relieve the pressure on my brain.

As hard as it was, I'm an optimist and this was giving me a huge dose of perspective. An amazing friend told me “recovery isn’t linear” and that helped me so much. I love a bit of humour to get through a tough situation, so I named my tumour "Donald" since I pictured him as mandarin-coloured and he was a pain in my neck!

The surgery

The craniotomy took six hours but luckily I was out cold. When I woke up and talked to my surgical team, they were all just smiling so much. Talking meant that I was managing my saliva fine and swallowing ok - so the first big unknown was clear. I still had a feeding tube just in case, and was on soft foods for a while. Every now and then things went down the wrong way, but being able to eat and talk was fantastic!

I was in hospital for six nights and it was rough. I was so dizzy and off-balance that I couldn't see straight, and I heard water rushing everywhere. As this calmed down over the next fortnight, I was completely reliant on my family to help with my recovery.

My neurosurgeon was very confident that he had got as much of Donald as possible. However, about a month after my operation I was in and out of Christchurch Hospital ED (emergency department) and having lumbar punctures for hydrocephalus. This is a risk with many brain surgeries and creeps up slowly as more water builds up in your brain (the cerebral spinal fluid stops draining).

In March I had another brain surgery to put a VP shunt into my brain and abdomen, to drain my brain. This needed to happen but was: a) terrifying for my family to watch; and b) prolonged my recovery significantly. I was delirious for most of the hydrocephalus period, but when I started coming around I realised I was rapidly collecting side effects: balance issues, tinnitus and hearing issues, headaches, fatigue and now I had a foot and hand tremor. This did not bode well for a job where I handle precious objects!

With help from the speech and language therapist, neuro-physiotherapist, occupational therapist, neurosurgeon and my amazing family and friends, I was able to walk around the block, develop my balance, strengthen my hands, understand why I was coughing when I was eating and manage my fatigue. I was also put on headache prevention medication. This medication had a super handy side effect - it reduced my tremor!

After three months off work, I began a return to work programme. My latest MRI confirmed that my tumour was successfully pruned back by 97% and had gone from a mandarin to a chickpea. I'll never forget the day I went back to work and my colleagues put on a morning tea with items made from mandarins or chickpeas! It was also amazing when I was able to do hand-held photos of very fragile objects.

A new diagnosis

Things were going well and I was developing a real passion for my health while hoping to inspire others to look after theirs too. I wanted my story to motivate people to visit their GP, to ask about that niggle or that funny thing. After awareness month, I asked my GP for a mammogram. I had two friends my age that were undergoing treatment and, being 40, it was recommended for me. I figured I'd waltz in, waltz out and post about it on social media - maybe it would help someone I know, who needed to get a mammogram get checked? Unfortunately, that someone was me. I was diagnosed with breast cancer in December 2021. What a year!

More mantras, more support groups, more relishing what I could over Christmas and New Year. With a meningioma, chemo and radiation aren't necessary. With my breast cancer, I had a lumpectomy, chemo and then radiation. Chemo was cut in half because I was "neuro sensitive" and developed signs of nerve damage early on (having peripheral neuropathy also wasn't ideal for my job, but my physio was able to help me with [more] daily exercises).

At the end of June 2022, after six months off, I returned to work... again. This time they threw a Pink Ribbon Breakfast. I have been so lucky with family, friends and colleagues - as well as specialists and allied health professionals.

Through a cancer study, I also saw an exercise physiologist which was amazing for finding a sense of physical efficacy again. Having a brain drain means I can't do inversions, so my favourite exercise (yoga) is kind of out, or hugely modified. I had to grieve that for a whole year before I could start moving on.

During 2021, I also started seeing a psychologist through my cancer care clinic which enabled me to discuss all the complexities of my case. I honestly recommend taking every support offered to you and actively seek out and ask for what you need. It has helped me so much, from helping to better understand what is going on (the more people explain something, using their own words, the more I get it) and I can build on my self-care and self-compassion toolbox as I navigate living with a brain tumour.

I also get to do this with a reframed manner of thinking. I used to see things as very black and white and was very hard on myself (whilst being extremely cheerful). Having this very challenging time, and this time off, has helped my brain learn to think in more grey/flexible ways. The brain is an amazing thing. Also, as I mentioned before, recovery isn’t linear.

So, living with a brain tumour. I do balance and hand physio every day. I struggle with headaches. I hope to work on my tinnitus this year. The worst is the fatigue, but I finally feeling like I’m living my life again. What kind of life do I want this to be? As full and as healthy and as awesome as possible - in moderation. I hope that my passion for living well inspires others.

Once I was back at work and slowly increasing my hours, I headed back to my ENT to see if anything could be done with my tinnitus. It’s always worth asking. Long story short, Donald had grown into my ear! In November 2022, I had an ear surgeon prune Donald from my middle ear. I used this as an opportunity to do a fundraiser for Brain Tumour Support NZ - it was International Brain Tumour Awareness Week after all!

The operation saved my left auditory bones and my left side hearing. My neurosurgeon and my ear surgeon will now work together to keep an eye on Donald, as well as me getting annual MRIs. Since my ear surgery, I've been working with all kinds of objects at work, had my first holiday (next step Australia!), am walking every day and exercising about twice a week. I do a bit of yoga at home and I've just started taking Donald to adult ballet classes with me. There's good weeks and bad weeks - which is how it is for everyone - and I know that recovery isn't linear.

I'm making progress every day. In the future I see more travel - the pandemic has saved me from having too much FOMO (fear of missing out) but I am excited to get out there. It's also hard not to adopt a "why wait" attitude after these last few years. I'd also like to do some sort of wellness advocacy work - once I'm settled back into regular work hours. I'd also love to go to Antarctica.

I’m so grateful for the love and support I’ve received from friends and family throughout my brain tumour journey, including my amazing family back in the UK who have been fantastic supporting me from afar.

Sarah Cragg
April 2023

Update April 2023

We’re happy to receive this update from Sarah. She finally took that next step and made it to Australia for a holiday!

Sarah is up for a challenge! She has started a new Give-a-little for Brain Tumour Awareness Month (May) raising funds for Brain Tumour Support NZ. In her latest fundraiser she is asking donors to suggest challenges for her to undertake. Go Sarah! Link to fundraiser here.