Where am I at?

I apologise profusely for the distinct lack of posts recently. I've been super busy, my Grandma recently went back into hospital and had to have an operation (which is risky for an elderly lady, especially one with health problems), and I'm fast coming to the realisation that my AS exams start pretty soon and I don't feel ready to pass them. I've also been catching up on the mountain of Music and Spanish and Biology work I had. I have also had concerts and rehearsals as well…so I haven't had much time, energy or drive to post. Sorry.

So, where am I?

I had my appointment at the hospital a couple of weeks ago. He didn't give much indication as to what he was thinking but he ordered the full panel of bloods (Chromogranin A, bone profile, CRP, FBC, renal functions, AKI, fasting gut hormone etc. etc. etc.) that he ordered last time. He ordered a colonoscopy with gastroscopy (or as he so delicately put it, "one in both ends"). Then he went into another room and the nurse came in holding a box of something called 'MoviPrep'.

'Prep'.

Ohh. I see.

Oh crap. Erm. Literally.

For those of you who haven't come across MoviPrep before, what it basically is is a special laxative to prepare your bowel for colonoscopy. Yes, a laxative. And a relatively strong one at that. It comes in a box in the form of 2 sachets labelled 'A' and 2 sachets labelled 'B', and the day before the procedure you have to drink two preparations (an 'A' sachet and a 'B' sachet mixed together) which will ensure you stay within 2 metres of a toilet. Lovely, right?

So that will be on Wednesday 11th February, with a day of fasting on Tuesday 10th February so..joy of joys.

Anyway, that's where I'm at. I'm sure it won't be that bad and hey, I get O2 to help me breathe so..just so long as I don't over-respond to the sedative, it should be all good.

More posts to come!

~Liz

Happy New Year!

HAPPY NEW YEAR!

(Just so you know, that video is not me, mine or related to me. I just thought it mildly amusing…poor neighbour though!)

Sunday Song

Tired today, so this is just a short post so I can give you a song.

This is Joshua Radin's gentle, soft rendition of Fly Me To The Moon. 

This is a special song to me, because when my Aunt passed away just over a year ago, she had had end-stage cancer for a few months and had arranged her own funeral (typical Katy, she had to be organised!) and the brass band that she was in before she became ill again played this as the coffin was taken out. It was sad, of course, but it was a beautiful ceremony and really a celebration of her life.

In this cover, it's just Radin and his guitar, and his voice is just a bit hushed. I love this version, and I hope you will too.

~Liz

Latest Asthma Check-Up

…was on Christmas Eve, no less.

So, I'll keep this brief. I had a chat with the nurse, talked about chest being tightest in the morning, had a spirometry.

The good news is, I'm up to 89% of predicted (as opposed to 81% of predicted in October) which is good considering I've been in hospital once, had a really bad chest infection, and had that issue with the guy who thought smoking an E-Cig RIGHT NEXT TO ME was acceptable (grrr…) although it isn't amazing, seeing as I'm a highly-trained singer so I should be between 100% and 125% of predicted, at least. But it's a start and it's progression in the right direction.

I showed Asthma Nurse my peak flow chart and she grimaced a little at the large zigzags on every page (see below) which should be, I discovered, more like little serrations or 'hops' rather than 'jumps'. What is basically happening is my peak flow (the biggest amount of air I can blow out really quickly) is okay in the evenings when I've had all my medication for the day, but when I'm waking up in the morning my airways are narrowed so my peak flow is low. This meant my chest felt really tight and breathless in the mornings so I resorted to using my reliever every morning, which is not right.

So, the verdict: steroid therapy has worked well to get down inflammation in my lungs, increasing my lung volume and peak flow and improving my symptoms, but I need a bit more help to keep my airways open so I've been given Seretide (Advair in the US), which contains a different steroid (dose-matched to the one I was on) but also a Long-Acting Reliever, which keeps my airways open for 12 hours instead of 4. Seretide is purple, so that makes a nice change, and it also has a counter on the back which makes me happy, because I am really bad at remembering when I've used an inhaler and in the past resorted to using a Sharpie to mark each dose on the canister which is not only a drag but also looks kind of untidy. The counter is really neat and it automatically counts each dose so..I'm happy :P It also seems to be working so far to stabilise my peak flow and keep me from getting tight in the mornings so I'm hopeful.

There's also this chart which illustrates that Seretide is a combination of two different medications to help me in different ways:

I've also gone back to Salbutamol for my reliever, because I was really struggling to use the Turbohaler as I couldn't pull the medicine into my lungs (it has a really high resistance) and it was mainly getting stuck to my throat, which is no use to anyone and just meant I had to keep clearing my throat all the time.

I got a spare spacer so I can keep one with my ice hockey kit. I also got a refill on my reliever inhaler, but I requested the smaller, gentler IVAX Salamol inhaler instead of the standard bigger GSK Ventolin inhaler, which has a harsher puff. It's mainly just due to the fact that the smaller IVAX one fits in my pocket better and is more discreet at college. I haven't finished my Ventolin yet so that's staying in my medicine pack as a spare. On the left is my Ventolin, on the right is my new IVAX inhaler:

Yeah okay so that wasn't really short, but that's where I'm at. Check-up in about 3 weeks will ascertain whether I stay on Seretide or change or whatever but for now..it's looking alright :D

Happy Holidays!

~Liz

The Inefficiency of NETs

Sorry, I'm aware that I've written quite a bit about Neuroendocrine Tumours (NETs) recently; probably just subconscious worry about the CgA/CgB tests I'm scheduled to have in January.

Quick recap., feel free to skip: 
I'm 16, and in June 2014 I went to the UCC at Burnley Hospital in the middle of the night with severe pain in my abdomen, and was bounced to Blackburn Hospital's surgical unit, where a couple of days later I had an emergency appendectomy (surgery to remove my appendix) due to appendicitis, for which I was told I would not have follow-up.

Around three weeks later, I was summoned rather oddly to Burnley Hospital, where I was told by a surgeon I had never met before that I had had a Neuroendocrine Tumour in my appendix. It was tiny, Stage T1 (<2cm in size), but I had a whole range of blood tests (including Chromogranin A/CgA) and a 24-hr urinary 5-HIAA collection (eugh) which were going to be done that day. I have weird veins, so they sent me to paediatrics. Turns out one test was fasting and I couldn't have it done because I'd eaten, so we rescheduled them. 

A week later, we were told I had to have my CgA done again, as it has to be frozen within 15 mins of being collected, so to the hospital we went.
About a month-and-a-half into my first year of college (sixth form, 16-18) I received a letter giving me the All Clear :D

Over a month ago, I began getting worse and worse pain in my abdomen, diarrhoea at night, flushing, headaches, chest pain etc.. I went to see my GP a couple of weeks ago, and a CgA+CgB test was ordered for me, which has yet to be done. A few days ago, I got a letter from the hospital with an appointment to see the Consultant General Surgeon who told me about the NET. Presumably he has to authorise the tests and wants to see me first.

***

So basically, that's me.

I was reading into the CgA tests and realised just how inefficient they are compared to other tumour marker tests.

PSA is a marker for prostate cancer. ~98% of men with fast-growing prostate cancers have high PSA levels. However, CgA is a marker for carcinoid and other NETs. Only 73% of people with any type of NET have elevated CgA levels. That's still pretty good compared with CEA, a marker for colorectal carcinoma, where less than 25% of people with cancer in the colon have raised levels, and only around 50% of those with metastatic disease have higher levels. But it's still a 27% chance that the test won't pick up a NET or ten.

Not only that, but the relatively slow turnaround time for CgA results is kind of crazy. The PSA test has an average turnaround time in the laboratory of 1-3 days. For the CEA test, it is less than 24 hours. CA-125 is a marker for ovarian cancer, and the turnaround is 1 day. For CgA? 1-3 WEEKS.

So, while you're waiting, your cells may be multiplying at an unfathomable rate. Fair enough, many carcinoid and NE tumours are slow-growing, but still a decent amount - and most in children and teenagers - are high-grade, fast-growing tumours. In three weeks, they could spread to other organs, or at least grow considerably.

Another issue is the large difference in what different labs consider to be 'normal' ranges. One lab sets the upper end of normal at 36ng/ml, while another lab sets it at 96ng/ml, and yet another lab sets it at 245ng/ml. What?! How is anyone supposed to know whether their levels are normal or not? I suppose a diagnosis is made on a combination of factors, such as CgA, 5-HIAA, other hormones and imaging such as CT scans and OctreoScan. But still...

Finally, it's actually a somewhat inconvenient test. It has to be frozen within 15 minutes of being taken, so it cannot just be taken at a blood clinic and sent to the hospital. It has to be done at a hospital with the right facilities for testing CgA. In my case, the nearest one is Blackburn which is a good 30 minutes away from my house, and about 45 minutes from my college, or over an hour by bus. It is also an unusual test, which many GPs are unlikely to have to order, ever. I get the feeling that some doctors don't even know what a CgA test is, which doesn't exactly instil faith in me. 

Correct me if I'm wrong, by all means. But to me, it sounds like a test that needs refining. And medical professionals need educating about NETs.

Is that really too much to ask?

~Liz

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:

Diawin

My mum, sister and I were at my sister's flat tonight for dinner and my mum was just checking her blood sugar levels at my sister's table with its brand-new white cloth with reindeer on it…

Mum: oohh sorry, I've just got some blood on the cloth…

Sister: what?!

Mum: it's ok, it's very strategically placed, it's on the nose of one of the reindeer so he looks like 

           Rudolf…

Sister: mum!!

Me: *has a look* I don't see anything…

Mum: got ya!

#diawin