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Sunday, 3 August 2014

About Me - The Kitten that Got the Neuroendocream

Hi. I'm Lizzi, and about 6 weeks ago, I had my appendix removed (more on that later). Until a couple of weeks ago I had never heard of Neuroendocrine Tumours (not such a great thing to say when you want to be an oncologist!), so when I went back to the hospital for a post-op appointment, aside from being a bit curious as to why I was having an appointment when I had specifically been told I wouldn't need follow-up, I had no worries. So after a breakfast of tomatoes on toast with black pepper (the best thing ever, believe me), I went along to Burnley General Hospital with my mum (I was only there an hour as most of my treatment was at Blackburn - why was my appointment in Burnley, for crying out?) and had a lunch consisting of Kettle chilli crisps, a tuna-and-salad sandwich (with tomatoes, of course!) and a bottle of diet coke.

Suffice to say, being told they had found a Stage 1 NET in my appendix along with the appendicitis was a bit of a shock. I have been having increasingly severe and widespread bone, joint and nerve pain for almost a year now, along with headaches, fatigue and worsening breathing problems since about October last year (attributed to possible mild asthma and allergies) and I have a relatively strong family history of cancer; one of my maternal great-grandfathers died of cancer before I was born, as did one of my maternal great-aunts. My paternal grandfather and one of my paternal aunts died of prostate and ovarian cancer (respectively) when I was about 2, and another paternal aunt died last September after a terminal recurrence of the breast cancer she beat 7 years before. So you can see my concerns!

I also had a severe Vitamin D deficiency 4 years ago (8.5 mmol/l) and maybe the pain and the tiredness are related to that. Also, as the appendix is regarded often as a primary site for NETs and as mine was Stage 1, if that was found on a scan or something, I wouldn't be particularly worried as the whole tumour was excised in the appendectomy. But in light of my relatively recent problems, and my family history, I am concerned. The hospital ordered a series of blood tests, including tumour markers such as Chromogranin A (CgA), Parathyroid Hormone (PTH) and Fasting Gut Hormone Screen, as well as a 24-hour urine sample for tumour marker 5-HIAA.









Those above are the order forms for the bloods and 24-hour sample (I have blacked out things like my address, home number, hospital and NHS numbers as well as the information of the doctor who ordered the tests, for his own privacy) and I must say, they sound dead simple but really they are flipping complicated!

For starters, they were going to do my bloods right there in the outpatients unit at the hospital. But no, I have awkward veins that are really difficult to find, so they sent me over to the paediatric outpatients unit (been there before, that story is on its way soon!) and I waited there for a bit with my mum. But then the nurse pointed out that one of them was a fasting test - one out of 12 blood tests - so I would have to get them done at another date. Luckily, the blood clinic right across the road from me (the hospital is 30 mins away) had a slot at 9:10am the next day.

Then, I had to go to the pathology lab to collect my sample bottles. I wasn't sure how to get there, and the directions I had been given at the post-op clinic had been impossibly complicated, so I asked the nurse, figuring they would be less complex now I was in paeds.

Yeah, you got it, I was wrong.

"Well, you go out those double doors and all the way down the corridor, then you go down in the lift and turn left and go all the way along the corridor then you turn right and you go down the steps and then turn left and go up in the lift and then go back on yourself and then go down the stairs and turn left and go down the stairs and then through the double doors and then all the way along the corridor and then you can't miss it!"

Riiight.

Needless to say, when I got to the end of the corridor I had to ask for directions again. As I did once I had gone down the stairs, and turned left, and gone all the way down the corridor again…

Finally, I found it. The lady was really nice, and we both agreed that the pathology lab was nigh-on impossible to find. She gave me the bottle, asked if I might need another one (spoiler alert: I did) and then started telling me about the things I couldn't eat for a few days before doing the sample.




So, remember the tomatoes-on-toast combo I had for breakfast? And the banana I had a bit later on? And the sandwich with tomatoes on I had at the hospital? And the bottle of coke? I had the latter in my hand and just held it up sheepishly.
"Ah," she said, "you're going to have to do it on Thursday then."
I was given my bottles, told the results would take a few weeks, and then set free with a smile.

So, in view of the fact I would have to go tomato-/caffeine-/banana-free for the next 4 days, my dinner that night consisted of tomato-and-cheese pasta with tomato-and-basil bread, plus a good helping of tomato salad on the side, a can of diet coke to wash it down with, and a dessert of - you guessed it - bananas.