Chapter 2: The battle begins

Argh couldn’t we just skip this chapter and go straight to Chapter 3: The comeback!? (if only!!) 😩

I’ve written a number of posts over the last few months which I haven’t shared. The main idea behind this blog was to channel and share my honest thoughts, feelings and experiences through this journey – a way for me also to offload… but truth be told life has been a crazier rollercoaster than usual and finding the time to sit and write has been close to impossible. So many life events have happened this year… I’m not even really sure where to start. Firstly thank you for the encouragement I’ve received to get writing again – I hope something in here will resonate with anyone going through a battle because lately, life has been just that…one big battle.

For those of you that have just started reading my blog, a brief recap – I was diagnosed with a brain tumour in Feb 2020, an inoperable diffuse tumour in an area deemed too risky to biopsy. Until this year based on the MRI scans, it appeared to be low grade & stable so we went with a “watch and wait” strategy. 3.5 years of stable scans, no intervention needed 🙏🏾. Fast forward to 2023 – what a great start to the year, productivity was high, life was balanced, I completed the London Marathon in April (it’s been a while since I mentioned that!), everyone was in good health, and we were looking forward to an incredible summer of holidays and weddings.

But then it all slowly started falling apart… 

• May: a few weeks after the Marathon, my drive and motivation went missing – call it “post marathon blues” but I just couldn’t find a way to get going again. The other little nagging thing in the back of my mind was my impending scan which was 9 months since the last stable scan. It would be the first one post marathon and I was actually cautiously interested to know what was happening. I’m reluctant to admit there was a small part of me that naively thought all the work I’d put into training and diet might have even caused a regression in my tumour. 

• 17th June: scan date – I had the usual scanxiety but something felt a little different, not sure if it was fear or hope. I usually receive my results within a matter of days. 1 week passed, 2, 3, 4 and still no results. Not quite panic stations because you tell yourself they’ll call straight away if there is something really bad, so we carried on and set off for a family wedding in Brazil. 

• 16th July: the day I landed in Brazil, I received a call from my Neurosurgeon with results that my tumour had grown and we needed to speak as soon as I get back. It would be 7 days before I get back, 7 days of uncontrollable thoughts, 7 really really hard days. 

• 24th July: the day we flew back, my 88 year old grandma (Amzy) who lived completely independently and in good health, had a really bad fall in her flat and seemed a bit more confused than usual. She was rushed to A&E and kept in for more investigations and scans. We had no idea what was going on – was it her arthritis? was it her eye sight? was it simply old age and frailty? 

• 27th July (the day after my birthday): I had my hospital appointment at midday to discuss the changes seen on the recent scan of my brain tumour. An hour before Amzy was having her MRI scan to rule out any brain pathology causing her symptoms. Results came back bad for both of us:

1. My grandma’s scan showed she did have a brain tumour and the worst aggressive kind. 
2. My tumour had changed. A small “seed” size area in the front of my brain had “lit up” on the scan… meaning it had become more active and it was changing (in a bad way). It meant no more waiting and watching – I needed to have a biopsy and then start radiotherapy and chemotherapy.

That meeting with the neurosurgeon went on for an hour but it felt like longer. We (my wife and I) came out in shock, tears rolling down our cheeks and in genuine fear of everything we just heard. I remember both of us sat in the coffee shop feeling at a loss. We didn’t expect him to say chemo and radiotherapy in the same sentence as me needing a brain biopsy. I asked my wife to just write everything down that we just heard from that consultation (the perks of having a doctor as a wife!) as it felt like i needed to get some fresh air and put a call through to my mum to update her. Before I could even tell her, I knew something was wrong just from her voice- she told me Amzy had multiple brain lesions and they suspected an aggressive brain tumour- Glioblastoma.

Was someone having a laugh? Both grandma and grandson- brain tumours? Awful news both on the same day, at the same time?! What did any of us do to deserve that?! I really couldn’t see or feel God’s big plan in this, it seemed a bit much to get hit with all this in one go. I guess I never questioned my faith in God, but I was angry at God. I broke the news to my wife and straight to the car we went without a second thought and started driving up to see my Amzy. Thinking about it now, I never had the chance to really process or grieve the shock from that appointment. The next month was a blur. It was my grandma that helped refocus my faith – even though she was in hospital, her memory was going, her mobility was going, her faith was so strong… man I miss her so much as I write this. I’d be lying if i said i wasn’t terrified seeing her slip away the way she did.

I had my biopsy 2 weeks later while at the same time my grandma was fighting for her life. And one last cruel sting, we had been planning my cousin’s (Amzy’s youngest grandson) wedding at the end of August, for which my grandma was meant to be walking him down the aisle, just like she did for me.    

My grandma sadly passed away on 18th August 2023 before she had the chance to do that.

Esther Harriet Jebasothy Devendrarajah Sept 1934 – Aug 2023

The “Breaking bad news” appointment- some practical advice!

Ok so I really wanted to mention some points with the scan results meeting because I learnt some things that I feel might be useful to share to anyone else on a similar journey.

I went into that meeting on 27th July fully focussed. I wanted to understand everything. But after about 5 minutes, he introduced the words biopsy, radiotherapy and chemotherapy into our conversation and the rest kind of passed over my head.

First point – I would highly recommend taking someone into these meetings with you or record the conversation… you’re not meant to be able to process this kind of information immediately. I’m not ashamed to say I freaked out when I heard those words. I was potentially expecting a biopsy (i.e. taking a sample of my brain tissue to test) but I was not expecting radiotherapy & chemotherapy. My simple mind associates those words with end of life treatment and death. Might be dramatic but I’m sure I’m not the only one.  

These appointments are hard – there are so many thoughts, emotions and questions flying through your head all at the same time. Take your time. You’re allowed to just take your time. My wife was amazing and we just slowed things down and asked some really simple questions: when, where, who, why, what, how?! 

• When – next week, 2 night stay at the hospital
• Where – same hospital, St Georges
• Who – my Consultant Neurosurgeon, Tim (if anyone was to dig into my brain, he was the one I wanted) 
• Why – because they needed to know more (genetics) about the new area of growth in the tumour 
• What – drilling a small hole into the brain and taking out a sample of brain tissue (equivalent to the size of about 5 grains of rice)
• How – using the latest sterotactic brain surgery technology

The meeting lasted about 1 hour and was mainly a blur but there were 3 things that stood out to me. 

1. Speed: biopsy next week, in 5 days?! That’s bloody quick. I hadn’t even had a chance to process all the information. If they’re doing everything this quick, is this now a lot more serious than it was? Is my tumour changing into what my grandma has? Nevertheless, I always have and always will trust the judgement of my neurosurgeon, so if he says we go, we go!
2. Delivery: Tim and I have a great relationship but what I love the most is the respect. He treats me like a human rather than a patient, he is honest and clear rather than fluffy and ambiguous. He showed me the images of my brain and explained where the changes in the tumour had taken place. He pinpointed one particular area of concern that looked like it might be changing into something nasty. When we first met back in Feb 2020, he said we’re going to think of this journey like a book (a very long book!) – Chapter 1 of the Sam story was “watching and waiting”. Chapter 1 is now over, we’re starting Chapter 2 “attack”. That analogy really made a difference to me because I could understand it, it was relatable and it continued the theme we started… it just made sense.
3. Hair: while explaining the biopsy process, Tim said he would potentially have to shave part of my hair – this made my cry. I didn’t want to cry but I couldn’t hold it in. My hair is not vanity, it’s part of my identity and when I was first diagnosed, it was symbolic to me. I spoke to my tumour and I quite literally said ‘you will never have my hair, you will have to rip it out if you want it, there is no way you’re touching it’ and for the first time in 3.5 years, it felt like the tumour finally got 1 up on me. It felt like it really struck it’s first meaningful blow by changing my appearance. 

This summer was life changing and one I would like to forget, but never will. 

I’m really pleased to say I came through my biopsy safe and well, they got the tissue they needed and Chapter 2 is on track. We were able to say goodbye to Amzy together as a family and we were able celebrate my cousin’s wedding together as a family. If you look at the picture below, she’s right there with us, shining from the heavens above 😊 

“When you go through deep waters, I will be with you” Isaiah 43:2 🙏🏾