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Monday, 15 December 2014

Square One?

Some days it feels like things are changing for the better. Other days, not so.

Like the day you realise you've flushed for the 7th time in 3 days. The day you realise that the pain in your stomach is that bit sharper and more intense than it was yesterday..and the day before..and the day before that. Or the day you realise that that nausea isn't just because you are hungry, or you have eaten too much, or you've slept in a weird position.

And the day you go to the doctor and she orders a Chromogranin A (CgA) blood test for you.

For those of you not in the Neuroendocrine Tumour World, Chromogranin A is a tumour marker for NETs. It is almost always elevated in people with NETs and, although it can't tell you for certain, if your levels are raised and you have a history of NETs, it's basically a relapse, although this must be confirmed with imaging such as PET-CT scans and OctreoScan, as well as other NET markers such as 5-HIAA and gut hormones. I hope it won't come to that, but I have to be realistic. It could be a relapse. Or it could not be a relapse. We just don't know yet.

But I remember these tests from back in August. I had a whole panel of blood and urine tests which looked to ensure there was nothing growing in my body NET-wise. They all came back within 'normal' ranges, and that was great. Now, however, I am getting that same sense of time stopping for a while. It is like I'm in a limbo point right now. I don't know what the test will show, and my mum is almost annoyingly optimistic ("Oh, it'll come back fine, it was only a small tumour, it was nothing") to the point where it feels like she is somehow diminishing my experience and my emotions right now. Yes, I agree, I must be hopeful that the results will be fine and maybe they will, but maybe they won't and I wish she would accept that for now. I love her, but sometimes I wish she would take a step back and realise that this was kind of a big deal for me back in July when they found the tumour, and that now I'm kind of worried that it will be NETs and no amount of 'positive thinking' can change this. Maybe I just need to talk to her?

Eh well.

Right now, I have a song which I think sums this up pretty well: