Pancreatic Cancer; my Christmas diagnosis
Something isn’t quite right…
Saturday 7th December, 2019: We were excited to see our good friends and their 1 year old daughter who were coming for a meal and to stay overnight. Before they arrived, I popped to the gym. About half way through my normal workout, I just ran out of steam. I headed home and got ready for the evening. My husband is a fab cook, and had cooked up a fabulous cannelloni. I had good few portions and we had a lovely evening.
Sunday 8th December, 2019: I woke up feeling like the food in my stomach simply hadn’t shifted. I was full, bloated and a little nauseous. I stayed in bed whilst my family and friends went out for breakfast. I didn’t even have the energy to get up and say farewell when they left.
Tuesday 10th December, 2019: I drove to Southampton for my last speaking engagement of the year. The hotel I was staying at was hosting a Christmas party, which was putting a strain on the kitchen. I went to the bar to order some food, where I was advised that room service would be quicker. I went to my room to order food to be told I needed to go to the bar. I burst into tears, which is very uncharacteristic. I ordered a bowl of boiled potatoes, but just couldn’t face them.
Wednesday 11th December, 2019: I tried to eat breakfast, but just didn’t fancy it. I put my face on and headed to host my workshop. I was feeling pretty nauseas and hadn’t really eaten since Saturday. In the mid morning break, despite drinking a few litres of water, my urine was bright yellow. I tried to eat again at lunchtime with no success.
Thursday 12th December, 2019: I called my GP and got a same day appointment. My urine had darkened further, and now looked like tea without milk. The GP took a urine sample and sent me home with a course of antibiotics, suspecting a urinary tract infection.
Friday 13th December, 2019: Lying on the sofa in the evening I asked my husband if he thought my skin looked yellow, he wasn’t sure. I wasn’t it any pain, but still wasn’t eating.
Saturday 14th December, 2019: I woke up with a distinct yellow tint to my skin and call 111. The out of hours GP takes a blood sample and sends me home. We took our daughter to dance practice for a performance the next day.
Something is definitely wrong…
Sunday 15th December, 2019: I wake up, even more yellow, and see in the mirror that my eyes have taken on a tint of yellow too. I call 111 again and they request that I’m admitted to the Acute Medical Unit at Southmead. I was determined to see my daughter’s dance performance, so we went along… I don’t know if anyone noticed my yellow tinge. We called a friend and asked in she could go to theirs whilst my husband drove me to Southmead. On the drive to hospital, I start to feel scared for the first time. I was admitted to a side room, given an ECG, and waited for around four hours, before being moved to a bed and seen my the on duty Doctor.
Monday 16th December, 2019: I’m questioned very strongly about my alcohol consumption. As it happens, I hadn’t had a drink since August. It was my latest attempt to tackle the long term fatigue I’d been experiencing. This crosses pancreatitis off the list. I was in no pain, this crosses gall stones off the list. My recent trip to Vietnam becomes the focus, with hepatitis coming up as an option. I get sent for an abdominal ultrasound. The sonographer walked me back to the ward, and asked me if I had anyone with me. This sends a wave of fear through my body that I can’t describe. My urine is very dark now, and my poo has become whitish grey — like child’s modelling clay.
Tuesday 17th December, 2019: Another day in hospital. Still not wanting to eat. Sent for an MRI scan. No answers. Late that evening I was transferred to the GI ward, where I’m put on a trolley in a gap between beds on a full ward. I didn’t really sleep and burst into tears again in the morning, when I’m moved to my own room. (My room is 5 windows up, 4 windows left, from the right of this photo)
Wednesday 18th December, 2019: I got my husband to bring in the Christmas gifts, paper, tape and scissors so that I can do my wrapping. I have a few walks around the hospital, and I’m sent for a CT Scan. No answers.
Thursday 19th December 2019: Around 2pm, I’m asleep when I hear the room door open. In come Dr Griffiths, a nurse in purple uniform (my heart starts thumping!), a woman I don’t know and my husband. Tom sits on the end of my bed, Dr Griffiths is to my right, and the two women stand at the end of my bed.
“We’ve found a mass on your pancreas. It looks like cancer. There might be a chance that it’s operable.”
FUUUUCKKKK! Something is very wrong…
The air is gone from my lungs, I suddenly need the toilet. I grab for my husband’s hand.
“Oh fuck, that’s not the one you want, is it?!”
And so it begins. More leaflets than we know what to do with. The woman not in the nurse’s uniform is a dietician who starts to explain pancreatic insufficiency. So much information to take in.
Tom and I sit together. First thoughts are of our daughter, and how and when to tell her. Having lost my own mother aged 5, I was acutely aware of the impact we were about to have. I wanted to ‘do it right’ — whatever that is in this context!
Then the job of telling people. I called my sister. Tom called his Mum. Both got in cars almost immediately. Then it was my immediate work colleagues. We divided out who was going to tell whom, and then we thought about how to tell our daughter.
That night, I googled… a lot. It was horrific. 7% 5-year survival rate. Half die within 12 weeks. Only one possible cure.
It becomes clear. I’m dying, and it could be fast.
Then, I found the Pancreatic Cancer UK website where there were survivor stories — including a woman called Carol who’d been my age when she got her diagnosis and was going strong ten years later. I sent the link to all family and friends, and tried to sleep.
I couldn’t sleep. I sobbed uncontrollably. At around 2am a nurse brought me a cup of tea and sat with me for an hour or so.
Friday December 20th, 2019: My sister and mother in law visit me at the hospital and and the dietician brings me pots of Creon (digestive enzymes) that I need to take with all food, and nutritional milkshakes — I’m still not really eating. I go for another scan, I’ve lost track of what this one is.
Saturday 21st December, 2019: I went home. Very yellow, and adjusting to the idea that I was probably in my final months, possibly weeks.
We asked my sister and mother in law to go for a walk and sat our daughter down. “The Doctors have found what’s wrong with me, and unfortunately it’s cancer.” I said.
“Will you die Mummy?”
It’s important to me to be honest. “Everyone is working hard, and we hope that won’t happen, but it might my darling.” is what I came up with.
Monday, 23rd December, 2019: I’m sent for an endoscopic ultrasound and needle biopsy. I’m sedated for this, but semi conscious (I think this is what rohypnol was actually invented for). Apparently, I wasn’t cooperative and this was abandoned.
Tuesday 24th December, 2019: After a few days in a daze with my niece and nephew with us, we go for a walk and our daughter masters riding her bike. It’s a magical moment. The last milestone of hers I think I’ll see. My Macmillan Nurse, Helen, is trying to organise a PET scan, and my case is going to MDT (multi-disciplinary team meeting) on the 27th to determine operability.
Wednesday 25th December, 2019: The Christmas I thought would be my last. Watching our daughter open her stocking on our bed is almost too much to bear. We get through it, somehow.
Thursday 26th December, 2019: We travel up to the Wirral to see Tom’s mum and brother. We head to panto — me bright yellow by this point. Helen is still trying to organise a PET scan.
Friday 27th December, 2019, 5.27pm: My phone rings. It’s Dr Rees from the BRI, he’s just come out of the MDT. It’s been decided that I am operable. I nearly drop the phone! They’re skipping the scan and going straight to surgery. It’ll be 2nd January, I’ll get another call on Monday with details.
I am operable. I have chance of living.
For more on symptoms, head to Pancreatic Cancer UK
This is my personal experience, shared to give a perspective on living with cancer. Follow me on Instagram at https://www.instagram.com/pancanbry/
