Nicola

Starting to get symptoms

In February 2022 we’d been out for a family day out at a country park and decided to have a takeaway Chinese for our dinner. After the meal I had bloating which wouldn’t go away for number of weeks and then I started to have oily, fluffy, pale poos. I went to the GP and was prescribed omeprazole. The medication did help however I was losing weight and had a poor appetite. I had no pain. The GP referred me for an ultrasound and to the gastroenterology team.

Lots of tests and a diagnosis

I had the ultrasound and gallstones were found and then the radiologist showed me the mass in the head of the pancreas. She said my GP would refer me onto the two-week cancer pathway. Over the next four weeks I had a CT scan, PET scan, two endoscopies and a biopsy.

I was diagnosed July 2022 with stage 3 locally advanced inoperable pancreatic cancer. I felt like a black hole had opened up with this devastating traumatic diagnosis.  All I could think of was I am going to die and leave behind my husband and our three children.

Sadly, my mother had passed away in December 2016 from pancreatic cancer and seeing my mum so poorly I kept replaying what happened to her and thinking that’s what’s going to happen to me. Understandably, mentally I wasn’t in a healthy place but with support from family I was able to come through the dark place I was in.

I am an active person, I regularly run and enjoy long walks daily and long family walks at the weekends. This had halted whilst I was experiencing bloating but resumed leading up to my diagnosis.

My treatment journey

My oncologist prescribed 12 cycles of FOLFIRINOX and I was told I had a 1 in 10 chance of the tumour shrinking and becoming operable.

Unfortunately, I developed jaundice and required the consultant radiologist to put in a stent in which delayed chemotherapy by three weeks.

I had no major side effects from the FOLFIRINOX and carried on as normal even going on two family holidays and day trips to theme parks with the family during the summer holidays. The only difficulty I had was the steroid withdrawal. I was prescribed steroids to come home with and when they stopped I was in bed for two days asleep.

After 7 cycles of chemotherapy I had a CT scan and I received the best news ever, my tumour had shrunk by 40% and shrunk away from the blood vessel. I was offered a resection known as the Whipple procedure. I was to stop chemotherapy immediately as I needed to allow 6 weeks clear before surgery. I met with the consultant early in November and he talked through the procedure and after care. There was a possibility of being diabetic, I’d also be going home with blood thinning injections for a month after surgery and would be shown how to administer those myself. And I’d be on lifelong medication including Creon and omeprazole.

On the 6th of December 2022 I underwent a successful Whipple resection and my tumour was removed in its entirety. I was told I would be intensive care then onto the ward for 2-3 weeks depending on my recovery. I was discharged after 5 days due to my speedy amazing recovery.

Recovering at home

I had district nurses come to my home to check and re-dress my wound at home. It was lovely to recover at home with the family for a quiet Christmas. I’d been given the best Christmas present ever.

Mopping up cancer cells

In January 2023 my oncologist contacted me for a review. I met with her and she wanted to offer me 6 cycles of adjuvant FOLFIRINOX chemotherapy. I decided to go ahead as I didn’t want to take any risk of cancer cells being left in my body, the consultant used the expression “mopping up “.

Six weeks after my Whipple resection, I started my chemotherapy. So the PICC line went back in and off we went. I was pre warned it would be more difficult this time and the consultant would have to see me more frequently for toxicity checks and frequent CT scans. I found all 6 treatments extremely difficult. I felt nauseous, tired, sleepy, disturbed sense of smell and it was a real slog to get through them. I was determined to finish the 6 cycles, however I did 3-4 weekly cycles due to the toll the chemotherapy took on my body and I did a 20% chemo reduction.

My last chemo was the 19th of June 2023 and since then I’ve had another CT scan and a PET scan and have been given the all clear. My PICC line was removed on the 27th of June 2023 and I got to ring the end of treatment bell. I am still seeing my oncologist for the next 6 months and thereafter I will have 6 monthly CT scans. I feel extremely privileged with the wrap around care I’ve received within the NHS and now feel I can make plans for my future.

Looking back at this past year

When I look back on the last 11 months it’s felt like I’ve been on a cancer roller coaster and I also looked back at all the interventions I’d received to get me where I am today:

• 1 ultrasound
• 2 endoscopies
• 1 biopsy
• 1 stent
• 8 CT scans
• 2 PICC lines
• 40 PICC line care
• 13 FOLFIRINOX
• 2 PET scans
• Lost count of bloods taken
• Whipple surgery

I couldn’t have done any of this without the help, support and care from my family, they all have had a part to play during my cancer journey. I’m going to live my best life and enjoy it.

Nicola 

July 2023