In the beginning…

I suppose if I’m to highlight why I think change and improvements are necessary in cancer care I should start with how it all began for me. Although writing this is a challenge. The human brain is a remarkable organ with an incredible ability to erase traumatic incidents in order to protect itself from the trauma and focus on recovery. Still, when I delve deeply enough the flashbacks emerge and piece by piece the 7 December 2017 slowly makes its way to the forefront of my mind.

Two weeks prior I had returned from a two week holiday in Thailand. Almost immediately upon my return I was suffering from severe lower abdominal pains that left me bedridden and unable to eat. This wasn’t the first time I had been suffering from pains in this area. I had been going to the doctors for 3-4 years complaining about sporadic colic type pains in my gut. Doctors constantly reassured me that it was IBS or a dietary allergy. One doctor in particular said to me ‘I know you’re concerned you have cancer but don’t worry, you definitely don’t’ she came to this conclusion without running any tests or even examining my tummy. 

The pain this time was worse than anything I had experienced before, initially I assumed I had picked up a bug from Thailand but the pain was becoming excruciating. My GP said he was ‘stumped’. I went to a&e twice,  both times they said they didn’t think it was anything serious but couldn’t determine what was causing the pain. No one was interested in scanning me. One doctor suggested period pains…he’s lucky to still be alive. 

No one was taking me seriously and the pain was worsening. It’s not an exaggeration to say I literally felt like I was dying, I didn’t know what to do. Eventually Ben told me I should see someone privately, almost immediately I got an appointment with a GI specialist who examined me and ordered an urgent CT scan. 

I woke on the 7th December 2017 in slightly better spirits. Whilst the pain was still present it felt like it was easing but more importantly someone was finally taking me seriously, however the mood changed quite rapidly when the phone rang. ‘Sophia it’s your consultant’s PA. Your scan results are back and it’s not good. Please pack a bag and go straight to a&e, your consultant will meet you there’

Shit. Ok. Don’t panic Soph ‘what do you mean it’s not good?’

‘Well it looks like your bowel is close to perforation, please just come in.’

I needed to call my parents, but how to do this without panicking them? Realistically it’s probably an ulcer, they’ve found it anyway and if they can operate quickly before my bowel perforates I’ll be fine. That’s what I believed and that’s how I sold it. 

Naturally my mum panicked and jumped in the car immediately, of course she did, it’s a mother’s prerogative but dad was with her and I knew he would rationalise everything as they made their way up to London. 

Upon arrival at a&e I was bundled into a bay and told my doctor was on his way. It took approximately an hour before a young man introduced himself to me as a medic working with my consultant. He asked me a few questions before examining me. Immediately something felt wrong. Why was he examining my neck? My pain was in my gut? Then he asked to examine my breasts. That’s when it all began to sink in ‘why do you need to do that?’ I hesitantly asked. I could sense what was coming and knew I didn’t want to hear the response ‘we’ve found a blockage in your colon’

That was it. That’s all he said. Then he carried on examining me. My face must have turned white because shortly after he said ‘you look worried like you’re expecting a serious diagnosis’

‘Yes’ I think I managed to muster. 

‘Yes it’s likely you will be getting one’

I was numb ‘has it spread?’

‘We don’t know that’s what we are trying to establish, we will likely run a CT of your chest’. 

And with that he left. 

I remember feeling so completely numb and confused. My brain went into overdrive. I didn’t cry, I was still in too much shock. I didn’t know what to do or think. I had so many more questions. There was no one to talk to or get any more information from. The doctor just walked out and left me having delivered a life altering bombshell. 

I would be on my own in that room for a further two hours before another medical professional spoke to me. 

Initially all I could think about was the word cancer. I didn’t know anyone with it and had never experienced it within my immediate family, both my grandparents died of bowel cancer, a point no GP considered relevant, but they were in Iran so I never really knew them. In amongst these thoughts a sudden sharp pounding pain fired through my heart chipping away like a pneumatic drill as it dawned on me, shit….my family. This is going to destroy them. My parents, how do I tell them this? We’re so close, I love them so much. I never wanted to disappoint or hurt them and now I’m supposed to tell them their only daughter has cancer. How can I do this to them? And my brother, how can I tell him? He’s my best friend, the only person I trust with my life, my right arm.  We’re supposed to grow old together, we’ve got plans for the future, our own business maybe. How do I do this? 

I knew the rug had been pulled from under me but I was frantically searching for a way in which I could protect them from all of this. For a brief moment I planned in my head how I could try to not tell them. I’m sure I can deal with whatever is to come on my own, maybe I’ll tell a few friends if I need some help here and there. Of course this was totally unrealistic for a number of reasons the most obvious at that moment being that my parents were on the way up anyway. No way I could talk mum into turning around and going home now whatever story I spun.

Eventually they all arrived at the hospital. Ben first, that was good, we could tell mum and dad together. We’d already decided we were going to beat this, let’s be as positive as we can, show mum and dad there was no need to panic. 

I can still see the worried look on my mum’s face when she walked into my bay, I was overcome with sadness knowing I would need to get used to her looking like that. My poor mum. The things she sacrificed for Ben and me, the hours she worked, the life she and dad built for us. She’s too kind to be put through this torture. Still, I had no choice… 

‘Mum, dad, sit down. I have something to tell you’