- Primary Neuroendocrine Cancer Site: Pancreas
- NET Centre of Excellence: The Christie NHS Foundation Trust, Manchester
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Living with Pancreatic Neuroendocrine Cancer
I’m writing this in November 2024, and at this moment in time, I aim to find a way to live with my pancreatic neuroendocrine cancer diagnosis
A Little About Me
A little background on me … I work full-time for Motorola as a Programme Manager. I’m married to Kate with 2 adult daughters. I have many hobbies including my allotment with three greenhouses, a brood of hens, riding my motorbike and we’re about to have a house extension. I have no time for cancer.
On reflection, I’ve realised it’s important to me to do more than ‘live with’ my cancer – if I can.
Life Goes On – But How?
After a cancer diagnosis, all the old adages rear their inevitable heads: life is for living… the show must go on … make the most of what you’ve got … count your blessings … I’ve heard them all.
While each is a familiar phrase, I’m busy trying to work out what each means for me. This makes it sound like a choice, which it isn’t. The reality is that life does go on, and you still have all the same responsibilities, with the extra appendage of cancer attempting to weigh you down. The question is: will I let it? And how much of this can I control? Select here to watch Navigating the Uncertainty of Neuroendocrine Cancer: Insights and Coping Mechanisms video.
Realism and Optimism: My Coping Mindset
I’m fortunate, my natural propensity sits somewhere near realism, with an occasional dose of optimism. So, I get on with it, because Mr. Realism recognises that I’m too young to retire, too stubborn to give up – and I don’t have a choice.
Mr Optimism looks for ways to make it all a little easier.
Managing Fatigue and the Stigma of Asking for Help
When my cancer is stable, my biggest issues are fatigue, and a complete inability to ask for help. Being a man, my logical reaction is to plough on and push through the fatigue, while stubbornly refusing any form of help beyond free prescriptions. You won’t be shocked to hear that I sometimes fall flat on my face, simultaneously infuriating my family.
So, I try again. Let’s talk about travelling – for work and pleasure. I work in technology. Apple has a phrase: “There’s an app for that”, and it’s never been more true.
Travel Tips for Work and Leisure
I catch a train from Cheshire to London once a month, getting up at 5am, and sometimes not getting home before 9pm, so it’s a long day.
Using the Passenger Assistance App
I discovered the Rail Passenger Assistance app, and the Disability Lounge at Euston Station. Both are fantastic. After booking my tickets, I go on the app, pop in my details, and the help I need. I’m now safe in the knowledge that after a long meeting and a short tube ride, I can check into the lounge with my Hidden Disability Sunflower lanyard , and collapse on a chair. I’ve been known to nod off. But – and this is the important part – I only found out about these when I joined my local Manchester Patient Support group run by Neuroendocrine Cancer UK (and incidentally, also funded by the charity).
The staff at Euston give me a nudge and before I know it, I’m being driven in a buggy to the carriage door nearest my seat. It’s not glamorous, but it’s still cool. I’m taken on before the platform is announced to the public, so it’s calm and unhurried; my luggage is carried on if I’m having a particularly bad day, and I sit back and let the train take the strain.
When Things Go Awry: The Wallet Incident
On one occasion, as the train pulled away, I decided to buy a cup of tea. Well, I would, if I could find my wallet. No amount of revisiting every possible pocket resulted in a wallet in my hand. I resigned myself to the fact that I must have dropped it at the station and was diligently cancelling cards when I got a rather odd Facebook message from someone called Kim.
I don’t know many Kim’s, and things get a little weirder when I read it: “Hi Alan, I have your wallet, it was in my mother’s handbag!”
I decided to call her, although I wasn’t sure how the conversation would go.
Kim was extremely apologetic: “My mum has never done this before,” she said, as she apologised yet again. “I only left her unattended in the Disability Lounge for a few minutes…” My mind briefly considered the fear of being blackmailed, or having my identity stolen, to the embarrassed realisation that I’d been pick pocketed by an octogenarian.
If you don’t know me or haven’t followed me before, have a look here.
It’ll show you that issues like this aren’t uncommon.
The relief as I listened to Kim apologising again was palpable. Clearly, her mum was in earshot, so she could hear the trouble she’d caused. No harm had been done, she kindly posted it back to me the next day. I still use the Passenger Assistance app, but I make sure my wallet is zipped securely in my laptop case.
Flying with a Hidden Disability
Let’s get back to making travel a little easier. I was sitting in Faro airport when I first started writing this, which leads me onto another support network I’ve tapped into. Flights are more arduous than trains. OK, trains aren’t always on time, but at least you don’t have to get to the station two hours before.
The Hidden Disability Lanyard
Most airports also have a Disability Lounge, Copenhagen is amazing, with Lazyboy recliners that give you a massage. But I’m getting ahead of myself. You can book in advance, or just turn up, present yourself to the Disabled Lounge and they register you on the system, then give you a Hidden Disability Lanyard for free.
This my friends, is a Willy Wonka Golden ticket!
Special Assistance at Airports
For example, if you fly out of Manchester Airport, they fast track you from the lounge onwards. In fact, it gets better. As you approach security, they spot the lanyard and whisk you into a lane designated for people with disabilities, visible or not. It’s the shortest security queue you’ll ever encounter.
I also have an implantable loop recorder (ILR) inserted in my chest, which monitors my heart (not related to my neuroendocrine cancer). To find out why, check out this episode.
Thanks to the battery inside, I have to bypass the scanners, getting frisked instead, which is quicker. My wife insists I enjoy the frisk too much. Then before you know it, you’re through Duty Free and having a nap … while firmly holding onto your wallet, or is that just me?
I was shattered at the end of a recent trip to Sweden and Denmark, so I had a delightful and lazy hour in a massage chair, before being wheelchaired for a full 20 minutes to get to our departure gate. I say our, as my wife was in hot pursuit, calling: “I’m with him,” as we used the golden ticket to get home.
We did the same arriving into Faro recently. Before I tell you about that, it’s worth noting that last year, on a similar trip to Portugal, we didn’t ask for help. We arrived with 7 other planes from England, converging in the arrivals hall with a football crowd of twenty somethings, all eager for a holiday beer, but only two UK passport control lanes open.
My wife, being of Irish descent, winked, then strolled over to the European channel, with two people in front of her. At this point, my luck changed, an impatient and thirsty lad who looked like he’d skipped school, unhooked the seatbelt style barrier holding us back. We involuntarily surged forward en masse, and I found myself second in the queue for the security booth, with 800 frustrated students behind me. A bemused wife stared at me, as I nonchalantly strolled up to the booth.
As soon as my passport was stamped, we legged it, before 800 students lynched me. “Never again,” I said to myself, as my brother-in-law whisked us into his Fiat 500 and off into the night.
Our more recent trip to Faro was a dream by comparison. I booked assisted travel at both airports, and for the flights. Security was a blur of efficiency, we were met at the gate and bypassed everyone waiting to board, taken to the plane via a separate route, just for us and three others with assorted disabilities.
In addition, we, like many others, are frustrated that you must pay to sit next to each other on a flight. As part of the service, the carrier moved us to adjacent seats, near the exit and bathroom. We noticed they did the same for the other three, this was kind, but not all airlines do this.
It was a long day, I was exhausted, but they met us at Faro with a wheelchair. Even though we were last off the plane, we went via a different route, beating most of the flight, via a dedicated security booth, and at least this time no one wanted to lynch me.
The brother-in-law was waiting again, we followed him to the car park, somewhat confused, as we couldn’t see his Fiat 500. It was then that he admitted, he’d treated himself to the immaculate 1953 Mk 7 Jaguar we were standing front of. Sometimes, cancer focuses the decisions of those around you too.
We drove off in style, my wife in the front catching up with her brother, while I greeted the many smiles with my best attempt at a royal wave from the back, as we glided past.
Travelling for work or pleasure with a disability is never easy, but we CAN lighten the load a little. Use the services offered. You’re not a fraud, even if it turns out you’re having a good day, and maybe could have travelled without extra help. Those not living with this condition will never understand the wall of fatigue we can face when we least expect it. I know for sure; my monthly injection brings fatigue with it.
Support at Work: Openness and Adjustments
Throughout my illness, I’ve been completely open with my employer about my health. I took a risk and admitted my feelings of vulnerability. I’ve never asked for help before. But I can admit now that the help helps. I know I’m fortunate when I say my employer has appreciated and respected my frankness.
I didn’t expect this, but the openness is quite freeing. To be honest about how you feel, is to be guilt-free, even when human nature makes us fear the reaction.
Another example … the day-to-day grind of working from home on conference calls doesn’t sound too bad. Unfortunately, I find sitting at a desk all day uncomfortable, so I asked HR for a corporate background for virtual conference calls. I now sit under the arch of Tower Bridge with a London bus blurring past me, and the company logo in the corner. But it means I can move around at home, and change my seating position regularly, with no impact on my corporate identity. I’m the consummate professional, as my customers walk over ‘my’ bridge.
I only travel if it’s necessary. Even then I might decline a face-to-face in favour of a virtual meeting. The honesty and vulnerability I’ve already mentioned, means my colleagues understand why, and hopefully don’t assume I’m bone idle.
I did a Podcast in August 2024 with Neuroendocrine Cancer UK’s CEO, Catherine Bouvier, and Lisa a fellow patent and ambassador. It’s about the realities of living with neuroendocrine cancer, and the focus is self–advocacy and resilience. You need both just to get a rare disease diagnosed, more so if you’re working while living with cancer.
I think for me, cancer adds a whole other layer of work pressure. If I’m brutally honest, I fear being pensioned off, let go, because my illness might be perceived to be getting in the way. That drives me on, because I think I’m actually quite good at what I do.
Even with the weight of cancer, I enjoy the challenge. I’m more driven than ever, constantly feeling the need to prove myself, prove my worth, prove I can still do it.
I do know, of course, that it isn’t actually very healthy to keep pushing through. I know there are better ways to respond, so I’m going to make myself vulnerable again. Nervously, I admit here that I’m having Counselling. I know I don’t need to be nervous, and the admission isn’t necessary. But here I am, nothing more than human, with all my faults and flaws. The Counselling has been interesting lately discussing what drives individuals and I think I can see things from a different perspective now – it’s certainly not gender driven, more perhaps work-ethic driven. I’ll think about that one next time fatigue hits me.
Final Thoughts: Don’t Suffer in Silence
Sometimes we have to help ourselves, by getting support from people outside our normal sphere.
That doesn’t have to be therapy, it could be joining a group of fellow patients, either face to face or online. Above all others, they will understand exactly what you’re going through.
So, if you’re suffering in silence, please don’t.
If you’re ploughing on at work without support, please don’t.
If you’re shielding your family, please don’t.
Neuroendocrine Cancer UK, and an army of fellow patents are here to listen, to help, to support and to understand. Join a Patient Support Group … ever tried one? Trust me, it was the last place I expected to find useful – but it was, and still is.
A final few words from me… I know many women who are just as bad as men at asking for help or taking advice. In fact, I remember a wise woman saying to me recently: “I’m full of advice, I just have to remember to take some of it!”
Alan. November 2024.