Jackie

Pain and a lot of tests

In February 2016 I had a deep, dull ache in my abdomen not severe but continuous which worsened when I lay down. I was admitted to hospital with pancreatitis. I left hospital on insulin for diabetes. In the April of that year, I had a cholecystectomy to remove calcified gallstones.

The pain continued after my cholecystectomy, less frequent but the same dull ache in my upper abdomen as before.

As time progressed the pain continued but was controlled by pain relief so didn’t stop me doing anything and I still had several pain free days a week which convinced me it couldn’t be anything serious, because surely cancer pain wouldn’t just disappear for days at a time? I didn’t have any other symptoms.

My visits to the GP became more regular. At the end of 2016 my GP referred me to gastroenterology and the investigations continued.

We spent most of March in Malaysia and on our last day there I remember walking down to a restaurant for our farewell meal in so much pain. I ordered plain boiled rice which I couldn’t eat.

We returned home and our youngest daughter came round to tell us that she was pregnant. I was elated and vowed whatever my diagnosis I would beat it to see my grandchild grow up.

We knew cancer was a possibility

I had an ERCP to take biopsies at the end of April 2017 and the following day we went away. We returned home feeling refreshed, but my abdominal pain was worsening. The following morning at 9am, I received a phone call asking me to attend hospital that Friday to discuss the results of the biopsies. Having spent the last year googling every symptom and its cause, we knew cancer of some type was a possibility.

That Friday in May we attended the hospital appointment and the doctor told me I had a tumour on my pancreas that was probably cancerous. I was referred to a specialist at another hospital. A nurse in the room offered me leaflets about pancreatic cancer and I took them whilst saying I’d read so much online, I could probably write my own book. We stood to leave and my 6’2″ retired police inspector husband keeled over. So shocked and traumatised by the diagnosis, he’d fainted.
Things seemed to happen in slow motion from then on.

I had numerous blood tests and scans and then eventually an appointment to see the specialist.

I was talking to one of the specialist nurses whilst waiting to see the doctor and they were laughing at the huge list of questions we had.  She said, ‘Don’t ever ask this doctor a question you don’t want the honest answer to’ and I knew then she would be someone I could trust.

The doctor listened to my symptoms then informed me I looked too healthy to have pancreatic cancer and although I did have a tumour on my pancreas she thought it benign as the biopsy was inconclusive.

But because I had pancreatitis she suggested another scan in four weeks. She explained that I would need a Whipple’s procedure to remove the tumour. But because pancreatitis causes inflammation, it can make the Whipple’s more complex so she’d rather wait until the pancreatitis was under control.

Having surgery

I was called back for a scan on 2 July 2017, my 57th birthday. My Whipple’s procedure went ahead on 11 July. There were no major problems, but low blood pressure post operation kept me in my bed for four days and I became frustrated and tearful. My husband had taken a relative’s room on the actual ward so was constantly by my side which was a reassurance.

I remember little of the first 24 hours which was spent in ICU. I couldn’t taste anything, the smell or sight of food made me nauseous and the pain was horrendous despite the pain relief. The many drains and tubes made me feel uncomfortable but every day a nurse would appear and take something away, a drip, a drain, a cannula, catheter and finally six days after my operation my final drain was taken away. Free from restraints, with my blood pressure back to normal and my husband by my side I took my first steps.

The doctor told me I needed fresh air, good food and rest, none of which I would get in hospital so I could go home. I was elated.

The pathology results showed my tumour was cancerous as were 11 of the 29 lymph nodes they’d removed. The size of the tumour plus the amount of positive lymph nodes made my cancer Stage 3, borderline resectable.

Chemotherapy starts

I was referred to the hospital for chemotherapy and in September 2017 started six months of GemCap chemotherapy. I managed to complete all 18 sessions with no delays or missed sessions. This was despite suffering with Hand-foot syndrome which can be a side effect of chemotherapy, and made walking or touching anything difficult during the last two months of treatment.

My gorgeous granddaughter Connie was born midway through my chemotherapy, and she became my reason to keep going.

My life now

The first two years post Whipple were spent waiting for a recurrence. I knew the statistics weren’t great so it was a case of when not if…. reaching two years cancer free was huge but it wasn’t until I’d passed the three year mark that I started to relax and think maybe I was one of the lucky ones.

On top of the daily trials of living life after a Whipple, in the last 5 years I have had an incisional hernia and repair, 2 heart ablations, a cardioversion, discovered I have a genetic heart condition and live in constant pain from arthritis…

But. I am cancer free and despite all the above, the insulin and the dozens of tablets I take on a daily basis, cancer has taught me to not sweat the small stuff and appreciate every day. Life is good……

My support network

I joined a Facebook group called UK WHIPPLE WARRIORS and found great solace in speaking to people who had ‘been there and done that’. I have a fabulous very supportive husband and family, a great empathetic surgeon and oncologist and a granddaughter whose smile cures all ills.

I want to share my story to give hope to others just starting their pancreatic cancer journey.

Never give up
Never ever give up