Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it's really all been about me.
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 https://ronnyallan.com/
and an award-winning community site at https://www.facebook.com/NETCancerBlog/
- both generating awareness amongst the global medical community about this less common cancer. He is passionate about moving his condition into mainstream health areas.
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.