My name is Emily, and I am British and live in Oman (Middle East). I was first diagnosed after a bit of a long journey of investigating persistent nausea and gastro issues. I’d had an endoscopy, which had come up with nothing and was told by my initial doctor ‘not to worry, it’ll go away in time’. But it didn’t, and so I persisted and found a great doctor who decided the first step was an ultrasound.
Although this isn’t supposed to happen, halfway through the ultrasound, the radiologist said ‘oh my god’, which of course got alarm bells ringing. I knew something wasn’t right.
I saw my doctor again immediately afterwards and he said we needed to book an urgent CT scan. That took place the next day and the results were in that evening – I had several enlarged nodes throughout my abdomen, hence the reason for the ongoing gastro issues, and that I needed surgery ASAP to take a biopsy and investigate further.
Three days later I had the surgery and was diagnosed a few days after that with grade 2 FL.
As I’m British but live and work in Oman, I was advised by my doctor at that point to head home for a PET scan and treatment (if required). I set about finding a private oncologist/haematologist and travelled back in late November 2017.
I finally got my diagnosis of stage 3, grade 2 FL in late November and decided, tough though it was, to go back to the UK for 5 months for treatment. It was a tough decision – I was leaving behind my 3 cats, my home, my job (which isn’t so secure as it is in the UK if you have to leave for such a long time) and loss of income. And I had to pay for my treatment!
Thanks to crowdfunding, savings, my mum and the generosity of friends, I managed to cover my treatment costs and rent payments back in Oman while I was receiving my 6 rounds of R-CHOP. But it was stressful being away from ‘home’.
I managed R-CHOP pretty well, with not too many side effects – a little tiredness, occasional sore mouth, a few aches and pains after the GCSF (a medicine for chemotherapy support) self-administered (!) injections each cycle, but it wasn’t too bad. For me the biggest fear was vomiting. I’m emetophobic, seriously so, and I didn’t know how I’d cope. Thankfully my oncologist was understanding and we started off with aggressive antiemetics and adjusted them as needed throughout the cycles (I came close once or twice, but didn’t!). For me, if I didn’t have to be sick, I knew I could get through anything.
At the end of treatment I’d had a complete metabolic response and was NED. That was back in April 2018. I re-joined my beloved fur-babies and re-started work on 10th of May.
That said, it’s not an easy life – I still struggle on an almost daily basis with nausea, bloating, acidity – and it would be vomiting too I suspect, if it weren’t for the fact that I do still occasionally take antiemetics. I can’t eat big meals, I can’t eat late, I can hardly tolerate alcohol (I was never a big drinker but I loved a glass of red wine) and I’m a bit less energetic than I used to be. But hey, I’m alive.
My doc says I should have ‘a good few years’ of remission, but of course, I’m hoping for many more.
Life isn’t the same, life is different, better in some ways, worse in others, but we learn to muddle through. I do, however, wish more people had an understanding of what you often have to go through on a daily basis and I’m hoping that sharing my story will help raise awareness of this and the disease.
