I would like to thank the incredible Maggie Watts @maggiewatts for sharing her very moving and frustrating story, about the dreadful lack of inaction within the Pancreatic Cancer sector.
“Imagine you want a sparkly new outfit but the shop can offer you nothing more than relics from the seventies (yikes, bell bottoms and tie dye shirts)….Or you’re in the market for a new car and the salesman is trying to palm you off with a 50 year old rust bucket…. Or in the Apple store you can only find a mobile phone the size of a brick………
No-one wants to be stuck in a time warp but if you’re unfortunate enough to be diagnosed with pancreatic cancer, that’s exactly where you’ll be. Faced with survival rates that have barely improved since the seventies. Limited treatment options and, for the majority, a very poor prognosis. The reality is that for pancreatic cancer, nothing much has changed in 50+ years!
I was 44 years old before I knew this. So, in all of my lifetime, pancreatic cancer had seen no progress. I’d been fortunate that no-one close to me had been affected by cancer previously. So I wasn’t paying too much attention to the inequalities that existed. Actually, I had NO knowledge whatsoever that they even existed at all.
Of course I knew that cancer needed funds and for years I’d paid a monthly Direct Debit to a large cancer charity. Naively thinking that all cancers were treated equally and that I was supporting them all. But in 2008 when my husband received his diagnosis, I discovered that less than 1% of my donation had been going towards pancreatic cancer. I was soon to find out that pancreatic cancer had been neglected forever which meant that my husband wasn’t going to be alive for very much longer.
Kev’s diagnosis was a shock. He was rarely ill but, for seven months he’d just not been right. As a result of going backwards and forwards to his GP, we were now sitting in a consulting room being told that his vague symptoms of back pain, a little weight loss and an upset stomach, (which the GP dismissed as being connected) was actually terminal cancer and his time left was very limited!
This was just too hard to comprehend. I wanted the best for Kev. I wanted treatment options, more time and certainly hope. We got none of these – they didn’t exist, we were in a pancreatic cancer time warp.
I left the hospital believing that if I Googled long and hard enough I’d find something and we’d get what we needed to give our family a chance of holding onto Kev. I’m sure Google was well and truly cheesed off with me over the next few days, as I asked it the same question in 1001 different ways. ‘Longest surviving inoperable pancreatic cancer patient’, ‘how can you survive for a long time with pancreatic cancer’, what is the best treatment option for pancreatic cancer to keep you alive’ ‘where can you go to get the best treatment for pancreatic cancer’ ‘who is the expert on pancreatic cancer’………………..
As fired up and determined as I was to find a solution, it didn’t take long for the penny to drop. If you were going to get cancer, this was one of the worst. We really were in trouble! The following hours, days, weeks spent on Google kept leading me back to the same conclusion. Eventually I had to accept that there was very little good news to be found. Kev was determined to survive as long as possible. We’d been told between 12-18 months. He made it to 20, but the end came quickly, a few days before Christmas 2009.
Now, 12 years on, I realise how ‘lucky’ we were to keep Kev for 20 months. I’ve since met people who lost loved ones within months or even weeks of diagnosis and I’m all too aware that if we hadn’t pushed the GP for a scan, that could have been us. In fact, 1 in 4 will die within a month of their pancreatic cancer diagnosis. In contrast 1 in 10 people will die on average if diagnosed with one of the 19 other common cancers – source – Pancreatic Cancer UK.
Without a doubt, pancreatic cancer has been neglected. In the last 12 years, I have seen a teeny bit of progress (research funding now c3%) but it’s nowhere near enough, we need so much more. The pandemic is predicted to set back all cancer research. There were already limited funds in the ‘pancreatic cancer research pot’ and I’m more concerned than ever now at the ability to see future progress if these funds are going to be further diminished.
Lack of research is only one part of the problem, the other being very little awareness around the symptoms. It’s down to the few small charities and people who’ve lost loved ones to try and highlight the symptoms. This is so important because early diagnosis could mean the difference between life and death.
I realise now that if I’d been symptom aware when Kev first started feeling ill, I may have pushed for him to visit a GP sooner. In turn he may have been diagnosed earlier and he may have been caught at an operable stage because his tumour was only just inoperable when he was diagnosed. We’ll never know if things could have been different, but I believe they possibly could.
I don’t know what the future holds for pancreatic cancer. I’m ever the optimist which is why my awareness campaign is called ‘Hope Is Contagious.’ Just because there hasn’t previously been hope, doesn’t mean it always has to be that way. I believe if we keep pushing for more then change will eventually come.
My suggestion, if you’re reading this, is perhaps you may want to take a moment to familiarise yourself with the symptoms of pancreatic cancer. None of us are immune, it can affect anyone at any age so it’s in everyone’s interests to be symptom aware.
I would also ask that if you see anything about pancreatic cancer on social media, please consider helping us by sharing it. The charities aren’t huge and the survivors are few (5yr survival rate – 7%), we need all of the help we can get to raise awareness further. A quick social media share of the symptoms could reach someone who needs to see them.
The fact that the medics could offer Kev no better a chance of survival in 2009, than they could his mum 40 years earlier, when she too was diagnosed with pancreatic cancer is shocking but true! More information can be found at www.hopeiscontagious.co.uk. Please help to create change so that we can see a day in the future when patients receive a pancreatic cancer diagnosis which is accompanied with hope #hopeiscontagious.”
This is a very stark reminder about what can happen when there is such little progress in cancer research. Something that I can see happening more generally, with the seemingly total lack of interest from Government and seniors in the NHS. Unfortunately nothing will change quickly enough for our families, unless we at least make some noise about the situation. This is not something we can leave to others, and must be done now!
Cancer needs a rethink! If you always do what you have always done, you will always get what you have always got. In the case of cancer, what we have always done is not good enough. We need to embrace new techniques, new technology and introduce new drugs quicker.
Cheers Mike and nicely put! Why are the people at the top of the #Cancer tree happy to sit on their hands? People forget we weren’t good enough pre-pandemic. The negligence happening now will set us back at least 10-15 years! We are ALL affected by cancer.
Thanks Maggie. I am six years post diagnosis and six years post op in July. Frankly I thought I wouldn’t make it. Always waiting for it to come back, terrible anxiety. A friend of mine lost her husband in 3 weeks after diagnosis. It is shocking. I am very lucky x
Thank you for all you do Gill
So sorry your friend lost her husband at such speed Gill, heartbreaking but, sadly, often the reality where #PancreaticCancer is concerned as you know better than most. I’m delighted you got to beat the odds Gill, absolutely warms my heart when I hear of survivors.
Totally relate, when first diagnosed with Liver cancer, another of the most deadly and confronted with the October pinkfest that is breast cancer felt very excluded. Not proud of my thoughts, no cancer is a good cancer but the research/support inequalities are huge/life changing
Indeed Den, that is the point we wanted to highlight. Dealing with #Cancer can certainly be a lottery. Things need to be better in so many ways. Unsurprisingly money is the driver, with very apathetic leadership, still getting well paid for continued failure.
I think your thoughts were completely justified Den – doesn’t mean we support other cancers any less – just that we recognise some haven’t had the funding and awareness they need & I think change will only come about by us making a noise about it. I hope you are doing okay x
Thank you for once again helping us to raise awareness of #PancreaticCancer – your support is greatly appreciated Chris
Thank you so much for sharing your very personal story Maggie. We ALL deserve better from the entire #Cancer sector.
Cancer charities do wonderful work, but they very seldom portray the reality of cancer that a lot of people go through. A lot of people have an utterly awful time, they need to be seen and heard. We can’t make progress until we acknowledge reality. #cancer
Couldn’t agree more. Some are a part of the problem!
Well done Maggie. Keep pushing this. Our loved ones need a voice. Brain tumours are horrendous too. Often no treatment options and killing more children and young people than any other cancer. Progress is possible if we fund it. Too late for my 17 year old son but not others
Thank you for sharing your own very sad experience Alison. Progress is possible across the entire #Cancer sector but no appetite from powers that be. Not all about money but there must be the will to change. I don’t see that at all, but the time is right!
You are absolutely right Chris. We need support from those in power to make a change. Thank you for all the great work you are doing and wishing you continued good health
Thank you for your kind words Alison. We cannot continue on this same path. History will judge us poorly if we don’t fight for what we deserve. I don’t understand the lethargy as it is already affecting every family.
Alison I’m so sorry for the loss of your gorgeous son Daniel – I can only begin to imagine your pain. I know brain tumour research/funding has been neglected too & I’m sorry you had to experience this. Thank you for being a voice – if you ever want anything sharing just shout x
Exactly this! We were lucky our son had PBT and is doing ok now, we lost many along the way and when I found out how much money goes to research I was incandescent!! They are happy to use the children to get the money in though aren’t they!! Boils my piss!!
Our piss has been boiling for many years Angharad. #Cancer has become a vast business with little care for patients from the giants. Pharma, charity and #Government take little responsibility for lack of progress. #MarketingMachines
So glad to hear your son is doing okay – I share your anger at how little research funding some cancers get – neglected for way too long meaning survival rates have just stood still. I also think too much stand alone stuff and not enough collaboration has been contributory to a lack of progress
Felt so sad reading it. Every person dealing with cancer should have options and hope. I’m so sorry for the loss of your husband xx You’re an amazing advocate keep going
In colorectal cancer progress is painfully slow too though.
When I talk to my friends with other cancer types they mention 7+ good lines of treatment, we have 2.
Coincidentally, the cancers with the most funding have the most lines.
This is not a coincidence.