We’ve done some fighting in our time… metaphorically of course, and we’re still here to tell the tale. Yet, I would never have believed that we’d be here, in 2018, fighting to survive… fighting against the service that was designed to save lives.

Today marks the start of Pancreatic Cancer Awareness Month, a much needed campaign to raise awareness of this horrible condition – but we cannot stop there. Awareness is all well and good, but the way we manage and treat the condition falls far short of where it needs to be.

On Monday 2nd July 2018, our world changed forever, when my mum was diagnosed with pancreatic cancer (pancreatic adenocarcinoma). Our journey to that point had already been one three months in the waiting, after a ‘lesion’ had been identified in the pancreas by accident, when mum had a CT scan of her kidneys on Friday 27th April 2018, while experiencing a urinary tract infection. Her kidneys were fine, but this was found by accident. We were reassured that it was probably nothing, but Bolton hospital wanted to refer this to one of the specialist hepatobiliary centres at Manchester Royal Infirmary. Some months down the line, mum went into Manchester for a procedure to take a biopsy of the ‘lesion’ in the pancreas, via the stomach (known as an endoscopic ultrasound with fine needle aspiration). Up to this point, we were assured that it was probably slow growing, and believed to be a Neuroendocrine Tumour (NET). However, mum was called back to Manchester on the 2nd July – when it was revealed that it was in fact a pancreatic adenocarcinoma. The surgeon was lovely, and suggested that the best way forward was surgery – to undertake a distal pancreatectomy, whereby the body and tail of the pancreas would be removed (leaving the head intact), since the tumour was in the body of the pancreas. He explained it was major surgery, but it would give mum the best prognosis. Essentially, it is the ‘curative’ approach.

We then began the process of planning for surgery – we had something to focus on; but as part of this process, there’d be a hell of a lot of different appointments. Along the way, we were reminded that mum ‘wasn’t as straight forward as others’, as a result of her existing long-term health conditions, including lupus nephritis, liver cirrhosis caused by non-alcoholic fatty liver disease, osteoarthritis, osteoporosis and a history of blood clots (though there haven’t been any of those for over 20 years). In July, she had scans galore, and had to attend a cardiopulmonary exercise test with the anaesthetist. This is a non-invasive method used to assess the performance of the heart and lungs at rest and during exercise… or ‘fitness for surgery’ in practical terms. It seems laughable, but they wanted mum to cycle on an upright exercise bike… on a day where she was unable to place weight on her knee as a result of her osteoarthritis and osteoporosis. We explained that she is mobile (albeit not able to walk too far), but today was a particularly bad day. Therefore, to assess the performance of her heart, they sent her for a myocardial perfusion scan – another scan to show how well blood flows through the heart muscle. We joked that her heart and lungs are the only two decent body parts left – and had the decision of surgery resting on these results. Some weeks later, now in August 2018, we returned to Manchester for the results. Apparently, the scan showed that mum had stress-induced ischemia of the heart… and the team seemed hesitant to want to operate, stating that the risk of causing death was very high. The surgeon suggested that he thought the next best option was to refer mum to an oncologist for neoadjuvant chemotherapy, given that recent research findings had indicated that this treatment offered good outcomes for patients – and importantly, he was not ruling out surgery further down the line… so off we went with this in mind.

Our first appointment with the specialist oncology team was on Tuesday 11th September 2018. Bloods were taken one hour before the appointment, and then we were called in. Somebody explained that a series of different people would be coming into us. The first person was the nurse clinician, who took a history from mum and I. I’d explained what the surgeon at Manchester had said about neoadjuvant chemotherapy, to which the response was… ‘we won’t be giving your mum that – she’s not fit enough’. She was trying to suggest that the surgeon hadn’t requested this, despite having a one-to-one conversation with him myself over the phone. She then said that Manchester had ‘just’ referred her for chemotherapy, and sadly this would be ‘palliative chemotherapy’, in the form of gemcitabine, a commonly used treatment for pancreatic cancer. She then asked whether we’d like to know about life expectancy – which had been at the back of our minds for some time, but we didn’t think we’d be thinking along those lines already, to which she said the average is around 12 months from diagnosis. My mum was inconsolable, as was I. I struggled to fight back the tears and heartache eating me up inside.

In the next breath, a consent form was shoved in front of my mum, tissues in hand, asking her to take part in the pancreatic cancer biobank. I was actually gobsmacked! Everyone knows how much I believe in research, but that was one step too far, after such a devastating revelation. Please never do this – not to mention that this is against ethical conduct of research, since she didn’t even have chance to read the title of the information leaflet!

Moving on, nurse specialists then came in the room, followed by the consultant who we only spoke to for a few minutes… we were asked if we had any other questions, but neither of us could think clearly. They said the next step would be to do a CT scan and a PET scan to assess the size of the tumour and whether it had spread, given the last scan was in July. They booked her in for chemotherapy as well, provisionally on Wednesday 10th October 2018, and said see you in three weeks time in clinic.

September passed, into October, and we returned to the oncology clinic on Thursday 4th October 2018. Bloods were taken again, and we were called into the consultation room… where we waited another 90 minutes, until the consultant came in. She was lovely in her manner, and said she had good news – the tumour hadn’t grown too much (now 3.1 cm from 2.7 cm in July), and it was contained within the pancreas – it hadn’t spread… but… mum’s platelets were slightly low (well they’re always low, just under the lower threshold, but I suspect this is due to her liver cirrhosis and autoimmune conditions), so the risk of causing a major internal bleed with the chemotherapy was too high. So the suggestion was to ‘wait’, for three months, to see how things go, and maybe we’ll then get a haematologist to look at her to see if they can do anything with her platelets.

Wait? Who waits to do anything with pancreatic cancer, especially when you know about it, and when it was caught early, compared to so many others who find out when it has spread!? I didn’t get it. I said we’re not waiting three months – and I want a haematologist to review her in the next two weeks. Safe to say, they never got back to us about the blood issue… and after calling them up to see where we stood, I was told that the haematologist at Christie’s won’t review mum because she doesn’t have a blood cancer – and suggested she go to the GP to get a referral at Bolton hospital – What the hell!?

After thoughtful discussions between mum, dad, I told the oncologist that I’d be asking the surgeon to reconsider – and if that wasn’t successful, I’d be seeking second, third and so on opinions elsewhere. Except for recurrent nausea and all of her other problems, mum is generally well. The cancer is contained and it’s operable… yet all we hear about is risk, risk, risk, and how she’s a complicated patient to treat. When the inevitable is the outcome with pancreatic cancer, risks have to be taken – we know she could die from the operation, but equally, in the hands of certain healthcare professionals, it seems as though they’re willing to just let her die anyways – the biggest risk of all for us is losing my mum, and I’m not prepared to let that happen.

So after numerous telephone calls, I managed to get mum back to see the surgeon, who we say on Monday 29th October 2018. Despite so called joint working between the surgery and oncology teams, not much had been communicated between the two teams about my mum. He was appalled by the way she’d been treated so far, echoing our thoughts of ‘waiting for what? For the cancer to grow, spread and for it be too late to do anything?’ So as things stand now, he’s getting a cardiologist to see her about this so-called heart issue, with the plan to go forward with surgery – somewhat back to square one, where we were in July.

I don’t think the powers that be realise the importance of time when it comes to dealing with cancer – especially pancreatic cancer, or the significant amount of flaws within the national health service. It’s only when you’re well and truly in the service, and reliant on it, that you realise how easy it is for people to become lost and forgotten. I worry deeply for those who are unable to speak up for themselves, or who don’t have friends and family to fight on their behalf.

People like my mum shouldn’t have to be fighting to prove they have a life worth living. Yesterday, it was 121 days – today it’s 122 days, tomorrow it’s 123 days. Days of waiting to know whether you’re going to live or die – because it seems as though nobody is bothered about you. It feels as though you’re a number – a statistic on paper. This is not just psychological torture… it’s evil – and it has got to stop.

PCUK

Written by simonrstones

Simon R. Stones BSc (Hons) is an award-winning patient advocate, consultant and researcher from Manchester in the UK, who was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with invisible illnesses, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood. He is currently an Associate Fellow of the Royal Commonwealth Society, a trustee of Fibromyalgia Action UK and RAiISE, and board member of the European Network for Children with Arthritis (ENCA) and the European Network of Fibromyalgia Associations (ENFA).

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