Hey!
Thanks for joining us and taking the time to read this. Long story short, if you're looking to read a blog about living with Oesophageal Cancer, you're in the right place!
Short story long....
My name's Jo, I'm in my early 30's, live with Type 1 Diabetes and I'm partner to Tony. In November 2024 Tony was diagnosed with Stage 3 Oesophageal Cancer.
We've started this blog to raise awareness, our experiences, tips and things we've learned along the way. The highs and lows, good and bad. Oh and have a good vent every so often too!
So how did we find ourselves here?
- PS, there's going to be a lot of plurals in here, lots of ''We''. While it's Tony that has the Cancer, I promised him from the start that he won't face a single moment of this alone, and as a result ''we'' have Cancer.
Tony has had acid reflux for a long time, years in fact. It's always been managed with over the counter tablets like Nexium Control with great success. It wasn't ever something we were overly concerned about.
In the summer of 2024 Tony noticed that swallowing food was becoming a little challenging, like something didn't feel quite right. Not being one to worry too much about things he'd manage this ''symptom'' as we now know it was, by having a glass of juice, water or coffee with meals to help wash them down. As this symptom got worse he adapted to eating smaller bites and using more fluid to wash food down.
In August, becoming more aware that something wasn't right, he contacted his GP. Tony had a routine check up and was sent for an Endoscopy (camera down the throat). At the time we were told everything looked okay, irritated from the acid reflux but ''no signs of anything sinister''. Tony was prescribed Lansoprazole which is a medication that reduces the amount of acid produced by the stomach. He was to take this for 4 weeks, and would have a check up camera at 8 weeks.
The Lansoprazole did ease the swallowing issue (Dysphagia) a little, though water with meals was a must!
Tony attended the check up scan at 8 weeks and was advised to prepare for the worst. The reduction in acid reflux had allowed the swelling inside Tony's food pipe to reduce, revealing what appeared to be a possible cancer.
That phrase isn't something you are ever prepared to hear. Ever.
We spoke in depth about it, as we do with everything (We like to talk things out, no holes barred, brutal honesty) allowing concerns, emotion, fears and doubts to be aired. Our logic was this:
We doubted Cancer, we thought maybe GERD or Barrett's Oesophagus, though we felt confident if it was Cancer, it must be very early as we'd been told 8 weeks before ''there is nothing sinister''.
Quickly followed more tests, biopsies, and a CT scan.
And then we waited.
It feels like an eternity. I cannot put into words how agonising the wait is. Or how many times in that 2 week period we thought about the ''what ifs''. We were like a ping pong ball. In one moment we were on an upward bounce, sure it couldn't possibly be Cancer and if it was it must be early, small. We felt positive. Then follows the inevitable downward fall to rock bottom. Fear, doubt, past life experiences around the dreaded C word.
We were told to expect results around lunch time on the 8th of November, a Friday. We'd been told the MDT meetings (multidisciplinary team) happen on a friday morning, ad all updates would be passed onto us by our specialist nurse on friday afternoons.
More waiting, we were used to that part, but the anxiety as the day ticks on is soul destroying. You could see the wear marks we'd paced into the carpet!
Mel, our Upper GI nurse called. Tony and I sat facing eachother, his phone between us on speakerphone, heads bowed staring at the phone screen Mel uttered the words we both dreaded.
''Tony, i'm really sorry to tell you, you have Cancer.''
Everything stopped. In one sentence the world stopped spinning.
''It's in your oesophagus''
Now the world's spinning again, way too fast. My heart beats so fast I can't catch my breath. Tony's body shakes, his hand squeezing mine so tight I can feel his pulse in his fingertips.
''It's stage 3''
It felt like everything shattered. In that moment everything changed. Our life plans and goals.
- Stage 3! But there's only 4 stages. Holy shit! He doesn't look ill though! They said nothing sinister on the 1st scan. Is he going to die from this?! I don't know what to do!
Mel very calmly walked us through what they'd found so far and what all of the tests results meant, expertly breaking down the medical jargon into bitesize chunks easier absorbed in a time of crisis.
Mel's explanation and guidance through what happens next was akin to being lost in a forest at night and spotting a home with a light on in the distance. The sense of calm, hope and reassurance was unreal.
We were told we'd be sent for a PET scan which would allow for the tumor to be graded and a treatment plan would be drafted from there.
We ended the call understandibly shaken, numb, emotional.
We sat silent for a while, attempting to gather our thoughts before making the decision to dive straight into telling the people in our circle who needed to know.
I can't lie that afternoon is a total blur. Tony and I both set about calling family and friends.I called my dad first, like a 6-year-old with a grazed knee; I cried like one too! A much-needed release.
The rest of the day is hazy, but one that sticks with you for life. The tears shed, the support from loved ones. Some moments stick more than others. Does that make sense? I'm the princess in our relationship and all of a sudden I had to step up. Be strong, hold Tony. Everything flipped on it's head. My dad said to me, ''Think of all the times Tony has saved your life over the years. He needs you now. You need to be the strong one for a little while.''
My friend Bev, who, knowing i'm a fan of meditation told me to ''pour a funky tea, light some smelly sticks, bang a gong and put your big girl knickers on 'cause your man needs you''. A much neeed pick me up.
Tony's brother, Simon, said ''You can only play the cards you're dealt, right. '' A much needed motivation.
That's our ground 0. Our Cancer start point. As time goes on we'll write more, hopefully breaking our jouney down into chapters as we go.
See you next time!
Comments
Post a Comment