Life sometimes has a way of throwing heavy, well-aimed bowling balls at neatly laid plans, leaving them in complete and utter disarray. I can imagine that most of us have had our fair share of such experiences. In this blog post, I will share mine in the hope that it will help create awareness, inspire us to action, and give hope to anyone who may just need it.

In July 2017, I was getting ready for work one Monday morning when all of a sudden, I experienced what I later found out was a seizure. Prior to this, I was in great health, and had never had a seizure, so it was totally out of the blue. There didn’t seem to be any obvious cause either. The doctors went through a check list of questions… I didn’t have epilepsy, no high fever, rarely ever drink (and hadn’t done so prior to that), never taken drugs, blood sugar was tested and nothing unusual found, I hadn’t fallen and hit my head. It just happened. I was told it can sometimes happen as a one-off due to stress etc. Brain tumours can cause seizures, but that was a worst case, unlikely scenario. However, just in case, they did CT and MRI scans. Unfortunately, this was one time that statistics were not on my side. The one time I didn’t want to defy the odds, I did. After scans, tests etc, I was diagnosed with a brain tumour. Needless to say, even though I didn’t fall off my chair, it was truly a shock. I had two small children aged 4 and 1, I was doing a professional qualification at the time, and in a dream job. A brain tumour was NOT a part of my life plan at all.

I went through a whole range of emotions – anger, sadness, despair, shock etc, wondering whether I would even get to see my children grow up, why this was happening and what the point of anything was. It was a time of my life when I really identified with the anguish some of the Psalmists wrote about.

The good news though was that there was hope. It was likely treatable. After some uncertainty, my neurologist and neurosurgeon eventually recommended brain surgery, but the idea didn’t exactly spark joy in me. It would be more accurate to say it sparked dread. In the interim, life went on. Thankfully I didn’t have any more seizures, but I did have some tremors and headaches. I got to celebrate a few more birthdays (My kids and mine), and continued working and volunteering. I also finished my qualification. Then in January 2019, I had brain surgery, a procedure called an awake craniotomy, where they wake you up during the surgery to ensure that you don’t lose functionality in the process. The tumour was in the part of my brain that controlled movement in my right side, so losing functionality would have meant partial paralysis. If you’ve ever watched the series ‘Surgeons: At the edge of life’, you may have seen the procedure being carried out.

Thankfully, my surgery was reasonably successful. I did have temporary partial paralysis afterwards, and the absolute worst headaches I have ever experienced (and having a brain tumour sadly means I have had a whole range).  I know this may sound crazy, but there were times I wished I could just temporarily remove my head and put it by my bedside table just so I could sleep. BUT, I survived, and the neurosurgeon was able to take out a chunk of the tumour, even if not all of it. I am grateful that I had my lovely mum who came to care for me and my kids during the period following my surgery. Eventually, things felt settled. I still didn’t have any more seizures, life went on, I recovered use of my right side and I went back to work after six weeks. I did continue to have regular check-ups and scans though, and it was usually quite nerve-wracking waiting for the results. Scanxiety is real. Sadly, the scan I had in late April 2022 showed some further small growth and as such, the period following that was a tough one for me. However, although the growth was concerning, it was small, and I wasn’t having any abnormal symptoms. I was quite tired and had some headaches, but those were not particularly unusual, so I tried not to worry.

Until 15^th September 2022. I was working from home when all of a sudden I had multiple seizures. I am extremely grateful to God that my brother was around on a visit. He was able to call an ambulance and I was rushed to the hospital. It was an awful experience, having multiple seizures, each like extended electric shocks. Mercifully, I blacked out during some. However despite it feeling like one of the ‘cloudiest’ days ever, there were silver linings – me not being alone when it happened, and the speed with which the ambulance crew arrived.

Sadly what it likely meant was that the tumour, which had previously behaved itself reasonably well, had grown a bit and was now causing a fair amount of trouble. I was admitted into the hospital that day, and put on anti-seizure medication. Unfortunately, despite being on three anti-seizure meds (which really wipe me out), I have continued to have seizures every single day since being discharged, although thankfully much much milder these days. As such, I am now facing a long road of radiotherapy and chemotherapy.

Some interesting things have happened on this journey though. A week after the seizures, I had an appointment with my neurooncologist. I discussed some of the measures we had put in place at home so that if I do have a seizure, I can get help quickly even if I’m home alone or with my kids. She was quite impressed and said she hadn’t come across anyone who had so quickly adapted and put such controls in place. I was reflecting on this afterwards and realised that because there is an element of my job that involves risk mitigation, I was able to utilise this experience, and the wisdom of friends as well. Thank God for the blessing of this.

A really key thing I have learnt through all this though is the value of what is most important to me, my faith, family, friends, and communities. Only a very tiny number of people knew about my diagnosis initially, until September 2022 when all this happened. However, since then, I have talked about it a bit more, and the support I’ve received from the local communities I’m part of such as my church, children’s school, neighbours, as well as from friends and work, has been incredible.

Not being able to do the things I liked to do has been hard for me, but it has also sharpened my focus on what is important. Sometimes too, the little things hit you harder than you might imagine. This past weekend, almost three weeks into a six-week course of radiotherapy, I lost a decent chunk of my hair. I knew it would happen, I know the hair will likely grow back, but I was surprised at how emotional I felt about it. However, I’ve learnt to both mourn losses and look on the bright side. In a way, maybe hair loss is a sign that the treatment is working. I have certainly learnt the importance of hope to get me through the dark days. As a Christian, for me hope isn’t only about believing that the treatment will work (because while I certainly hope it will, there really are no guarantees). It is also knowing that “For to me, to live is Christ, and to die is gain”, as Philippians 1:21 states. As such, it is a win-win situation. I will admit it is hard sometimes because I’ve got young kids (now almost 10 and 7), but I’ve learned to trust God more through all this. The reassurance that God loves my kids more than I love them, and the support I’ve received from family, church, friends, and my local community gives me hope that my kids will be okay. Lots of people have been praying for me, and I have truly felt an unexplainable peace even during the loneliest and most challenging times, and the strength from God to keep on going. There is lots of suffering and darkness in the world, but I have also experienced the healing hands of kindness and the light it brings to my life and the lives of those around me. And it has truly been a palpable, continuous reminder of God’s love for me.

Because the tumour affects my mobility, I haven’t been able to walk much, which means I haven’t even been able to do the school run. I used to walk a lot prior to this, so if you know me, you will understand how hard this has been to adjust to. However, a wonderful group of parents from my kids classes have formed an ongoing rota, and for the last month plus, they have taken my kids to and from school every single day. I have received meals from my church, I have had people just taking the time to sit with me when I felt vulnerable, people taking my kids on days out, people kindly helping with jobs around the house (even gardening too, which has been a big blessing), people driving me to ALL my hospital appointments because I don’t drive due to seizures (and I go to the hospital every weekday!), people being there for me in ways I would never even have dreamed of. For that and more, I am keenly aware of the power of our local communities, and I am so so grateful for them. I would encourage us to take the time to be part of our local communities, as they are so valuable. I am grateful for my colleagues who check on me regularly, and have even given me their personal phone numbers if I ever need to talk at any time.

It was quite hard emotionally giving up (temporarily by God’s Grace) the things I used to do – serving in my church, being a trustee of a charity, work etc. Thankfully though, I get to still hold on to, and continue to function as God’s beloved child, mum to my wonderful kids, daughter, sister, sister-in-law, aunty, friend, niece. I am still part of a family (biological, church, community). These are the most valued aspects of who I am, and I am really blessed that, even on my weakest days, I still have just a sufficient amount of energy to continue to be all these, and enjoy the blessing of having these wonderful relationships in my life. On one of my lowest days, when I went to my church’s prayer room, I was drawn to this scripture on the wall from 2 Corinthians 12, “But He said to me, “My grace is sufficient for you, for my power is made perfect in weakness”(verse 9). It was a tough but encouraging reminder, and just what I needed at the time. I have gradually learnt to ‘be still, and know that He is God’ (Psalm 46:10). Although it is probably more accurate to say I have quite literally been forced to be still. I have been driven to worship God even more through all this (I guess you kind of know you are playing A LOT OF worship songs when you walk past your kids’ room and they are singing worship songs while playing with Lego 😊).

I have truly learned to appreciate the big, little and medium sized things more. The care I have received from the hospital has been fantastic, my medical team are absolutely brilliant and just so lovely and empathetic. I couldn’t have picked a better team even if I tried. Even the lovely lady who brought tea and snacks round the wards snuck me an extra cake 😊. I am grateful to God that I am in a place where I can even receive this quality of care, and I do not take this for granted at all. Not even the seemingly little things. I remember after my surgery, I was fortunate enough to get a room with a fantastic view, especially at night. And at night when my head was pounding and I couldn’t sleep or concentrate on anything like a book or video due to the pain, I had something beautiful to look at. I am blessed with joy and a refreshed heart (Philemon 1:7), and I now know that when God blesses you with joy, even the most challenging circumstances cannot dare to take it away, however much they may try. As the song goes, ‘This joy that I have, the world didn’t give it, and so the world can’t take it away!’. I am a chipped, cracked jar of clay, but I have this treasure, to show that the surpassing power belongs to God and not to us. I am afflicted but not crushed, perplexed but not in despair, struck down but not destroyed (2 Corinthians 4:7-9).

My kids have been incredibly sweet as well, and truly give me hope. I will wrap up this post with one of the sweetest things that has happened to me during this period. My 7-year old had his flu vaccine on the last Friday before half term, and he got a sticker afterwards for being brave. When he came home that evening, he removed the sticker from his shirt, stuck it on mine and said, “You have it mummy, you deserve it more because you’ve been braver than me.” I nearly cried, and that is now my new favourite sticker ever. I certainly don’t always feel brave, but that sticker reminds me that my 7-year old son thinks I am, and who am I to argue, especially when that 7-year old is very strong-willed! But I do know that the source of that bravery and strength is indisputably from God.

And so, because of the God I serve and all these wonderful people in my life, I am determined to keep going on, to keep persevering through the good, the bad and the ugly side effects of this treatment. I am determined to live a life that is truly worth living, to the Glory of God, in Service to Christ and manifesting His Glorious Life, no matter how long or short mine is. I am determined to continue adding colour to the lives of those around me, to try my best to show people the overwhelming, never ending love of God, and to keep paying forward the incredible kindness I have been so privileged to benefit from.

P.S.: I am also writing this in honour of International Brain Tumour Awareness Week (29^th October – 5^th November 2022). The statistics for brain tumours are not great (Link here) BUT miracles happen, medical advances keep happening, and there is HOPE!

Image source here.