Supporting the

Neuroendocrine Cancer Community

 

I was diagnosed in May 2019 and can remember thinking “Ok, I think I know what I have ahead of me…” but unlike other cancers, Neuroendocrine Cancer (or NETs) has proven, for me, to be “the cancer that just keeps giving”.

Between the treatment and the disease, it has felt like my body has been turned upside down. Six months after my diagnosis, my pancreas decided that digestion was just too big a job, and I developed Exocrine Pancreatic Insufficiency (or EPI). This has required so many vitamins and “enzymes” (eg. Creon or Nutrizym) that I now consider them an appetiser!

I also had to shift to a “low amine diet” to reduce Carcinoid Syndrome episodes. If you want to know what’s on a low amine diet, think of everything you love to eat- then give it up. However, there is an upside – you can have as much air as you like…

Seriously though, a low amine diet may be difficult but it is very healthy with mainly fresh foods including lots of fruits and vegetables.

Then, due to the malabsorption caused by my fussy pancreas, my Vitamin D levels fell dramatically. Add a few more tablets to the mix, and I now sound like a Maraca when I walk. The drop in Vitamin D levels then led to problems with Calcium, and subsequently parts of my parathyroid glands are considering moving away – permanently with a bit of help from the surgeon. Good riddance, I say.

Lately, all this fuss about parathyroid glands means of course my poor, abused pancreas isn’t getting enough attention, so it has decided to play table tennis with my blood sugars.

How my blood sugar can be lower when I eat than when I don’t is yet another gift I didn’t expect. Except that it’s now understood that long term use of the monthly injections can sometimes interfere with blood sugar levels. But how many people have a pancreas that can play table tennis, after all.

The icing on the cake is that now being seen for any other health matter means I have to explain what Neuroendocrine Cancer “is’ to those providing my care.

Neuroendocrine Cancer UK is trying to raise awareness, but in my experience, it’s a mystery to all but the specialists.

I’m considering charging those to whom I must explain about this cancer and its treatment a fee for training them.

Oh, another gift from Neuroendocrine Cancer… I now carry a red card that says “At Risk of Carcinoid Crisis”, both because if I ever need surgery someone will need to know about this, and to keep the “Urgent – I need the toilet in a hurry!” card company. Both of these cards are important… for different reasons, and I never leave home without them.

Overall though, of all the ‘gifts’ Neuroendocrine Cancer has brought into my life, the one I hold closest is the fellowship of those who like me, fight this battle every day – both other patients with Neuroendocrine Cancer and the staff at Neuroendocrine Cancer UK.  Like me, they endure the many gifts given by this chronic cancer, whilst also giving the gifts of empathy, understanding, friendship, information, and support.

I didn’t expect it, but I’ve discovered that living well with a chronic cancer is possible. Mostly because I am accompanied on this rollercoaster by these wonderful people who really do understand.

Bethann Siviter (Patient)