Ronny Allan is an award-winning international patient advocate for those with neuroendocrine cancer and he is a long-term survivor of the disease. He frequently writes about the many aspects of living with a long-term and incurable cancer including diagnostics, treatment, education, support and campaigning for more attention for unmet patient needs. He runs various social media outlets including a blog at 

- both generating awareness amongst the global medical community about this less common cancer. He is passionate about moving his condition into mainstream health areas.

Ronny Allan

Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me getting on with whatever needed doing. I served in the military from age 16 until 45 — a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defense it was really dark). Illness wasn't really something I thought much about and for minor things, I would just "soldier on.” So, from an early age, I truly believed a “poker face” was necessary for “street cred” but I guess that was ingrained in the military mindset.

Even out of the military environment, old habits die hard as I adopted the same attitude. The “mission” comes first and my health second. A few “civilians” once suggested I go home after coughing, sniffing and sneezing my way through a day in the office. I responded in the only way I knew by saying I would only be leaving the office early on a stretcher having lost consciousness. To get them off my back, I made sure there was no hint of banter or joviality in the statement. This tactic didn't really work and they laughed at something they perceived as a joke. However, little did they know, I was deadly serious. Little did I know, my gung-ho attitude and poker face were to become seriously deadly.

In 2010, along came cancer. For a couple of years before diagnosis, I had not been sufficiently focused on my health and soldiered on, ignoring what I now know to be key symptoms of neuroendocrine cancer. Even leading up to diagnosis, I was dismissive, refusing to acknowledge this was a threat. Other people get cancer, but not me! I even landed in the hospital via the ER as I refused to slow down after a biopsy. Still in denial, I thought I could beat cancer not knowing that cancer knew with 100 percent certainty that it could beat me. I went on to have surgery and other treatments, but apart from that, I basically marched on as if nothing had happened. However, as the effects of cancer and the consequences of the treatment started to bite, I accelerated my learning on how the disease might affect me in the future. This knowledge has enabled me to manage risk and make better assessment/decisions about seeking help. But it took a while, and gradually over a period of three years, I shifted the focus from work to health.

It's not been easy to learn how to live with my incurable disease since diagnosis. Finding a balance between how I want to live and how to stay alive has been difficult. My “

 combined with an appetite for work didn't really help in the end. In 2013 (three years after diagnosis), I finally found the time to work on the reasons for fatigue and many other symptoms. I made some really good improvements to my quality of life. I still have issues, but my cards are no longer close to my chest — they're now more frequently on the table, particularly when speaking to doctors and close family. My poker face is still there for special occasions, just more relaxed!

"It's the cancer," can sometimes be the most convenient excuse to not do stuff. I can play the “cancer card” as well as the next person, and it will trump all others! I also understand that motivation can be difficult with a chronic illness. However, I don't want to fall into the trap of doing nothing all the time. That’s not a good outcome. Consequently, I try not to use the metaphorical cancer card too much. In fact, I sometimes even say "

" when I actually feel like playing the cancer card. I'm nearly always glad I did.

Articles

Before I was diagnosed, I had my share of illnesses, but none that slowed me down like cancer could.

Poker Face or Cancer Card?

Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it's really all been about me. I didn’t see the trauma coming, and my family has supported me throughout every single step. I really don’t want to be the focus of attention as that mantle was normally evenly distributed. However, there’s nothing like a cancer diagnosis to put you into the spotlight.

Facing an uncertain future with regular scans, injections, treatment, pills, examinations and blood tests has made me the center of attention, whether I like it or not. The focus is on me because these things are necessary to keep me alive for as long as possible and also because I live with the consequences of cancer and its treatment which provides further challenges. A good quality of life is not only a motivator for change, good planning and constant surveillance, but it’s also hard work and has an additional impact on the whole family. It means all activities including work, holidays, days out, social activities and, even the simple act of eating, might all need to be organized around me due to the vagaries of my condition. It will never stop, it will never end and it will always be about me!

This has gone on for seven years and counting. “Cancerversaries” are on the calendar alongside birthdays and wedding anniversaries. Tumor marker tests and scans are reviewed twice yearly so the relentless attention continues, often peaking at these test milestones and worrying moments in between. The detailed analysis of unusual pain or other disturbances are documented. The attention is on me.

Then, my wife finds a lump. The local doctor investigates and refers her for a mammogram. The mammogram check leads to an ultrasound which then leads to a biopsy. We have a two-week wait before the all clear is given but the worry doesn't immediately dissipate as another check was scheduled for three months. Hang on a minute ... this is not about me!

I'm starting to realize it shouldn't be all about me and it needn’t be all about me. It's about other people, too. There is nothing in the rule book that allows cancer to be limited to a single family member. Cancer doesn’t really care how many in your household already have the disease — anyone is a target. It's bad enough having one cancer patient in the house without another cropping up. One thing is for sure, when it comes to a cancer diagnosis in the family, I really want it to be all about me.

Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it's really all been about me. 

Ronny Allan

Poker Face or Cancer Card?

Cancer Isn't All About Me

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