Usual clinic appointment, well so I thought. Turns out my bilirubin has gone through the roof (154). Did I know this was coming? Well yeah, Last Saturday I woke up with yellow in my eyes, trying to ignore it I check with mum who confirms and advice we seek. Carry on and play football at the weekend enjoy it and know there is nothing that an extra day would achieve. I plough through and wake up Sunday like a little kid so excited to play football and wow we did not disappoint one of the most complete performances I have seen from us and one proud captain off home for a roast and prepare for Monday.
This brings me back to the clinic appointment. I enter thinking just bloods maybe defer a week but no with a bilirubin level that high its time to worry (high bilirubin =1 it’s 154). Sent off to ultrasound to see if they can answer the question, whether a stent can be put in to release the bilirubin due to a blockage or is it just my liver unable to cope with the toll it has taken over last 5.5 years.
Unfortunately, ultrasound is inconclusive and does not answer Dr Awesome questions so off home I go with an early CT booked. Sat in the CT room wondering if this will be my last but praying it’s just a blockage. CT completed with ease – pro at these now – nothing to hold these up. Now to the wait and the anxiety, surprisingly though I’m quite calm just eager to know. Maybe it’s because this really is all out of my hands. Thankfully to the great team around me 2 days later I get the results. Not what we wanted but not as bad as expected, I’ve heard that before. This time though neither is a good solution. There is no blockage, so a stent would be utterly pointless which means it’s the disease in my liver, causing my liver to be unable to dispose of the bilirubin.
On the positive images don’t look as terrible as expected there is some growth but not out of control not that this matters as with a bilirubin that high, treatment is totally off the cards so either way we are out of options. I know what this means the appointment I’ve been trying to avoid for 5.5 years is here and my time is running out very fast… If bilirubin stays high the outlook is dimmer, if my body can begin to process it it may buy me a little bit more time, but either way this is the end of the road and a matter of time before the inevitable. What I do know that is although this is shorter than I hoped my life would be, I’ve had a great one surrounded my love, fun, happiness, experiences and some incredible moments, 5.5 years ago I’d have snapped your hand off for this long, the odds were set against me, but I beat them and although being on treatment I’ve lived and loved wholeheartedly.
How do you process that news? What do you do next? What do you say? What do you do? These and 1000s questions run through my head and I guess that they are questions I need to answer in the upcoming days, but also consider Covid and the implications of that. If you don’t hear from me again through this blog, thank you for reading, supporting me, following and share this journey beside me. For now this is me signing off and saying goodbye.
Time to now live what life I have left with the people I love!!
To everyone out there we don’t know and can’t ever predict what life will deal us what I do know is every minute, hour, day and week is valuable, make the most of it. Tell people you love them and laugh (laugh lots) life isn’t meant to be too serious… Do those things you want to do, follow your dreams endlessly and love wholeheartedly. Enjoy the time on this planet you have don’t waste it.