One year on....

This time last year we were winding down from a week away to celebrate PP's birthday.  She'd been unwell off and on throughout the summer and a diagnosis of pancreatitis had been given.  On our return home, she experienced further onset of pain, and our GP requested a blood test at our local hospital.  While she was there, and still in pain, I insisted that she attend A&E, where she was quickly put through triage and an urgent scan was carried out.  Just hours later, she was told that they'd found a mass on her pancreas and that it was cancer.

She was kept in hospital for a few days, while they carried out further tests and on the day of her discharge we met with the GI consultant who outlined their immediate plans... referral to the regional pancreatic centre, 80 miles away, for a biopsy, and an appointment with the oncologist at our local hospital to discuss treatment options... initially a regime of chemo.  We were also told that the tumour was wrapped around the portal vein and was inoperable, which was a major blow.

At that stage, it was assumed that the diagnosis would turn out to be the common type of pancreatic cancer (adenocarcinoma), and although we put on a brave face, we both secretly thought that it might all be over by Christmas.  Pancreatic cancer isn't called the silent killer for nothing.  Mostly, by the time it's diagnosed, patients have at most months, sometimes weeks to live.

Except..... when we went to Guildford for the first of three biopsies, the team there expressed surprise at how well PP looked.  And when we met with the clinical oncologist she remarked on how well PP looked.  At that point we thought they were trying to be kind and upbeat, to raise our morale at such a devastating diagnosis.  However, it was around then that the suggestion of neuroendoendrine cancer was mooted.  We'd never heard of it.... unsurprising as it's much rarer than its better known, deadly counterpart. 

So chemo was put on hold, as it isn't effective against neuroendocrine tumours and PP then underwent a gruelling series of biopsies and a nuclear scan, as they attempted to get an accurate diagnosis.  Finally, in mid-December, they verified that she did indeed have a pancreatic neuroendocrine tumour.  In the interim, I'd gone on a war footing and had been researching like crazy.  Treatments for NETs (neuroendocrine tumours) are very different and I discovered that the best option would be for her to be referred to a Neuroendocrine Centre of Excellence, which specialises in NETs.  Fortunately, there are two of these Centres in London, with King's College Hospital covering our area of the south east.  So we requested a referral and she was rapidly transferred.  More specialist scans were carried out to determine the exact type of tumour and the suggestion was made that despite being deemed inoperable by both our local and regional hospitals, there was a chance that the surgical team at King's might be able to do a resection, as their transplant surgeons have experience in dealing with tricky vascular surgery.

Finally, in January, we received an appointment to meet with the lead transplant surgeon, who confirmed that yes, he could operate, although the surgery would be challenging, due to the tumour's involvement with the portal vein.  His plan was to remove the tumour from the head/neck/body of the pancreas and leave the tail, which was hoped would produce enough insulin to prevent her from becoming diabetic.  The op, which is called a Whipple, would also require removal of the gall bladder and duodenum as well as the affected local lymph nodes.

With a projected wait of 12 weeks, she was started on a monthly injection of Lanreotide, which acts on the cells of the tumour to reduce activity.  It wouldn't shrink the tumour, merely aim to keep it 'asleep'

On April 28, she underwent surgery, but due to the size and position of the tumour, unfortunately the tail of the pancreas had atrophied, and there was no alternative but to remove the entire pancreas, along with the duodenum, gall bladder and spleen, plus assorted lymph nodes.  The portal vein was also resected.

It was major, life-changing surgery and immediately resulted in Type 3c diabetes, so she is now fully insulin dependent.  Having no spleen also has lifelong implications with regard to her ability to fight infections, and she will have to take twice daily antibiotics indefinitely.

Initially, recovery was slow and difficult, but now, 5 months later, she is very much better and continuing to improve week on week.  It can take up to a year to fully recover.  Having no pancreas makes diabetes management trickier than Type 1.... her blood glucose readings can fluctuate wildly from hour to hour at times, and we are constantly monitoring and making adjustments, as well as counting carbs to ensure accurate insulin dosage.

But life now has much more of semblance of normality than at any point in the past 12 months.  We have just returned from a week away in Dorset to celebrate PP's birthday.  It took us way out of our comfort zone, being so far from home and our support network.... it's the first time in a year that we've gone away on our own.  However, despite the daily duel with diabetes we had a lovely time in a little apartment overlooking the harbour, where boats came and went and the sun shone every day, prolonging the sensation of summer's last hurrah.

Back home now, and there's no escaping the autumnal chill.  I'm going into full 'nesting' mode, making the house cosy for the months ahead.  It's PP's one year cancerversary tomorrow, and right on cue she's just had her first post-op scan.  It will be a few weeks before we get the results, which will hopefully show that she has 'no evidence of disease', which is as good as it gets with all cancers.... neuroendocrine ones in particular.  After all the trials and tribulations of the past year it would be amazing to be able to move forward in the knowledge that the surgery has reset the clock.

It's impossible not to look back on the year and try to make some sense of it all.  While we were going through it, it felt interminable and exhausting, as though we were wading through treacle. I think we have both discovered a store of resilience which we didn't know we had.  

PP has been nothing short of amazing, displaying stoic courage and determination through the darkest of days.  For my part, I have done my best to be her most supportive and effective advocate... researching and evaluating accurate, relevant information and seeking the best professional help at each stage, navigating through the maze of diagnosis and treatment options, applying pressure when things stalled and generally trying to keep the train on the tracks.   Since surgery, the emphasis has moved to her recovery and she's been doggedly determined to get to grips with the vagaries of her daily life now, which revolve around constant monitoring of her blood glucose, keeping her completely re-plumbed digestive system in check and working effectively, and coping with all the new 'normals'. 

It's still a tad too soon to feel that the experience has given us a different perspective on life. Pending the first scan results we feel as though we're holding our breath and hoping for the best.  However, given where we were this time last year, it seems miraculous that we've both coped with everything thrown at us and have emerged, not exactly unscathed, but relatively unbowed.

Carpe diem and all that.....