Hi everyone,
In 2016 I was diagnosed with pNETs. For those who don’t know, NETs is a Neuroendocrine tumour. Mine is located in the pancreas, hence the prefix ‘p’. Neuroendocrine tumours are often referred to as being a rare cancer, but it is more better described as being uncommon.
As detection and understanding of NETs is better known, more people are being diagnosed. That in itself is a great thing. The earlier and the younger the patient is diagnosed, the more likely that patient can be cured.
People in my situation can’t be cured, the best we can hope for is management & smart strategies by even smarter NETs specialist teams to restrict the tumour growth. Various procedures and protocols are deployed, depending where the tumour lives.
I’m very fortunate. I don’t suffer any ill effects from the cancer itself. It is fair to say that if I hadn’t been diagnosed with the tumour, I probably wouldn’t know. I would die from the tumour, probably in excruciating late stage pain, 5~ years premature. However I do know & I have a wonderful team fighting the good fight, behind the scenes.
The effects NETs has had on me is hard to describe. A lot of the issues I deal with, not onerously, are extreme fatigue and weirdly sleep deprivation, brittle bones, an inability to concentrate and aches and pains in places never experienced before. I don’t know if these issues are age, previous lifestyle or as a result of the tumour and the associated medication. No one can tell.
Well I’ve done my bit to put the insomniacs to sleep, thank me when you wake. I’ll sign off, but also make a point. NETs is not a mainstream disease & gets very very little Government funding. It relies on donations to advance clinical trials, research and the like. I ask NOBODY to contribute, I’m just making an observation. Sleep well after reading this.
Lindsay
