“I am a statistic of one” – Erika’s pancreatic cancer diary

Erika Vincent, who wrote this piece and who was at the forefront of our Demand Faster Treatment campaign, passed away in February 2019. We’ll be forever grateful to Erika and her family for making the brave decision to champion our campaign.

Here she shares some of the many unexpected and challenging moments she faced in 2018. If you are affected by the issues in this, please do get in touch with our Support Line.

Preface: November 2018 “A very bizarre year”

Here I am, sitting in hospital waiting for hook-up for Round 10 of Folfirnox chemotherapy. It is likely to be another long day. But I am into the swing of things now, so I have plenty to keep me occupied – like trying to get past that blasted CandyCrush level I have been stuck on for the last week. I have a sore throat and achy legs, too much singing at the concert last night, and the high heels were a bit of shock after slumming around in flip-flops all summer.  I feel like I have climbed a mountain.

It has been a very bizarre year, like I have woken up in someone else’s nightmare. It has gone incredibly quickly, and I am surprised to find myself still alive and feeling pretty well.  Even my Oncologist is I think, he remarked at how well I looked the last time I saw him. Praise indeed.

But it started very differently…

I assumed I had picked up a stomach bug whilst visiting various primary schools as part of my job.  After 3 weeks I booked myself a GP appointment. Numerous blood tests and 3 ultrasound scans later, we had drawn a blank. On the outside I looked as fit as a fiddle, I was building up my cycling in preparation for a 50k bike in May, but instinctively I felt something wasn’t right with my digestion. I had no appetite, and felt as though I had swallowed an ostrich egg that was sitting at the top of my stomach. Anything I ate just seemed to sit on top of this and cause me pain.  By this stage the weight was dropping off at about 2kgs a week – weight that I had spent the last two years trying to lose.  I asked to be referred privately and a week later I duly saw a Gastrologist. So more blood tests, a CT scan with contrast and back to him on the 29th March, the day before Good Friday. He broke the news that I had pancreatic cancer and that I needed to be referred for treatment as quickly as possible.March 2018 – “Something wasn’t right”

April 2018 – “And this is where it all started to unravel”

My wonderful GP was horrified that I had been diagnosed with Stage IV pancreatic cancer, the only other ‘P.C.’ patients she had seen were elderly and usually had lots of other complex medical needs.  She was not expecting to see it in a young and fit 55 year-old. Some research over a very long Easter weekend highlighted the need to get treated as quickly as possible. I was still reeling from the “palliative care” route, surgery would not be considered as I two small lesions on the liver and a spot on the peritoneum in addition to my 3cm tumour in the head of the pancreas. My GP referred me to two centres on the basis that we would choose whichever the faster route was. My referrals were labelled “Urgent Pancreatic Cancer” and sent to the two centres.

And this is where it all started to unravel. One centre referred me for an Endoscopy for a biopsy on the tumour, the other centre wanted an MRI scan of the liver.  It would not be possible to be referred to the MDT (Multi-Disciplinary Team) until these had done.  Now for the shock of discovering that all appointments are booked and communicated by post, that we should “hear by the end of next week when the appointment would be ….”! There was no understanding the urgency of my diagnosis.  My husband spent hours on the phone trying to rush things along, we paid privately for the tests to be undertaken and my husband ferried the results to the respective hospitals to speed things up, but still no appointments. Messages were left on answerphones, and calls were not returned.

Eventually, it was discovered that I had been missed off the list to see the Oncologist at one hospital – and 3 weeks in, I hadn’t yet been reviewed by the MDT team at the other hospital. We were racing to the end of April, my condition was beginning to rapidly deteriorate and the weight was still dropping away. Time to write many letters of complaint – I knew now that I was dying. Because apart from anything else, I was starving to death.

1st May 2018 – “These Charlotte potatoes…”

Still no news from the one hospital, but at last an appointment with the Oncologist at the other. Hope at last, or so I thought.  I had not expected the Oncologist to ask why I wanted chemotherapy.  “It would only extend my life by a couple of months and usually only works in 30% of cases ….”.  I couldn’t believe that he could possibly think that I was just prepared to totter out of his clinic and go home to die.

I sign up for Folfirnox, hideous side-effects accepted, but we then found ourselves back chasing for a date for chemotherapy to start. Again, messages left were not answered – even my GP was chasing without any success. Meanwhile my symptoms were getting rapidly worse. I was housebound, as I was unable to sit at all. My tumour had developed its own pulse and could be seen beating at the base of my ribcage.  Pain levels were increasing daily, but I struggled on with paracetamol because anything stronger just left me in a fog.  After 10 days and still nobody had contacted us, it was time to write yet more letters of complaint.  This worked, and it appeared that yet again I had dropped off the clinical list, and I had started to turn yellow – so I was jaundiced now as well.

Strange thoughts pass through your head when faced with imminent death. The usual, “I will never meet my grandchildren or see my sons married.” Would I even be alive for my youngest A Level results in August? “Unlikely”. The oddball: “These Charlotte potatoes I am planting will live longer than me” and “well, at least I won’t have to worry about Christmas presents this year”. And yes, I will admit to a few occasions of throwing my toys out of my pram in anger – “Why me?”

15th May 2018 – “The beating alien has gone quiet”

C day! At last I am booked to have my PICC line fitted and then to go straight into chemotherapy.  A very long haul that sees me leaving hospital at 10 o’clock at night with a ‘baby’s bottle’ attached to a line into my arm. But the beating alien in my ribcage has temporarily gone quiet. Good news? Not such good news is I need to have a biliary stent fitted due to the tumour now interfering with the bile duct. The hospital manages to rush treatment through, and this is performed very quickly – but the next two cycles of chemo are reduced due to jaundice.

July 2018 – “What the heck is a Jackfruit?”

Fast-forward through 6 rounds of Folfirinox. Yes, there were side-effects but these were mostly short-lived.  Best of all the beating beast in my ribcage has stopped for good after Round 4, and with it all the pain has also gone. Life is now beginning to improve, I am now able to drive again, I am back on the exercise bike and I am managing my weight and appetite by resorting to a vegan diet. Thank goodness this seems to be a growing trend, lots of ready meals available in the shops, but what the heck is a Jackfruit?

August 2018 – “They are terrified of sepsis, I am terrified of boredom”

The Oncologist is beginning to accept that I am not going away quietly, and it is agreed that I will take a short break from chemo. This gives us the chance to whizz down to Devon for a few days with the bikes. We had a lovely cycle along the Tarka trail, 40 miles in one day, I was buzzing at the end.  My husband keeps casting me odd looks – and when I challenge him he says that he cannot believe I am so well, and had thought that I would be dead by now. Not today darling! All is not roses, my plastic biliary stent becomes infected and I spend 6 tiresome days in hospital on antibiotics.  They are terrified of sepsis, I am terrified of boredom. I spend my days touring the hospital before returning for my observations, I am determined not to let my fitness drop.

Son’s A Level results are in – just missed an A in Maths by one mark, but he has done really well, as he has had to study and sit his A Levels whilst dealing with my condition.

The Charlotte potatoes are going down well too!

September 18 – “Cheers mate”

Start round 7 of Folfirnox. “You will lose the use of your fingers and toes due to the increasing toxicity”, I am warned by the Oncologist. Cheers mate, but it is still a better option than death. And finally the review of the CT scan against baseline, good news some of the tumours on the peritoneum have shrunk and so has the beast in the pancreas so we are heading in the right direction.

The Future? – “A statistic of one”

What I am going to get people for Christmas? Probably harder for them, what can they get me? A tee-total vegan is a hard person to buy for. Gift tokens for the local healthshop methinks!

Who knows what will really happen next? I’m not sure my Oncologist knows either. I don’t think that they expect many patients to still be well after 10 rounds of Folfirinox and 8 months after diagnosis.  But I am still on my bike, and now walking at least 90 minutes a day through the beautiful Chiltern countryside. So, time to take stock. I am now planning to travel to the U.S. to get Nanoknife  treatment to the pancreas – yes I am pretty scared about this, but I have the realism that statistically I only have a 10% chance of making it to Easter otherwise.  Luckily I don’t believe in statistics, I am my own person, I am unique, my tumour is unique and therefore I am a statistic of one.  So, short term goals, make it to my eldest son’s 21st at Christmas, slightly longer goal to make it to Easter and our annual trip to Cornwall for a walking holiday.

And finally, just enjoy each day while I can.

Erika Vincent