I really don’t like to do our health service down, and even more than that I like to believe the Royal Marsden is as good as any hospital when it comes to patient care. However, there are times when even I have to step outside that little dream world and face reality …
Now believe it or not, I don’t actually like to cause trouble for anyone. Really, I don’t. Quite the opposite I spend quite a lot of time thinking about how we can make things as simple and straightforward as possible. For us, for the hospital, and most of all for Adam.
On 5th January when we got back from Germany I emailed the Marsden to say we needed an MIBG scan, the radiographers report and an image CD to take back with us on 23rd Jan. So that meant it all needed to be done by the end of Friday 20th Jan. A fortnight’s notice. That’s not unreasonable, is it? It’s doable, yes? Well I thought so at least.
When we got a letter on 12th Jan asking for a list of Adam’s current medications so that they “could schedule a date for his scan” I was a little concerned. I emailed them straight away to highlight the timescales. I was told those responsible were aware. We sent the form back and I was told it was received the following day.
On Monday the PCT agreed to fund Adam’s treatment and the fact we’d still not heard from the Marsden got overlooked.
Yesterday I called the Marsden to ask them if Adam’s scan had been scheduled. No, I was told, they were waiting for the nurse clinician to sign off the list of medications. I reminded them of the urgency, and that we were leaving it pretty late. They took my number and told me a colleague, who was responsible for all the bookings, would call me back.
Today I called the Marsden to ask if Adam’s scan had been scheduled as nobody called me back. No, I was told, they were waiting for the nurse clinician to sign off the list of medications. The nurse would have to call me. Why does the nurse need to call me? I asked. We’ve done a dozen or more of these scans and the nurse has never called us before? They replied by telling me they were going to end the call … no please don’t do that I said. (Why they said that I have no idea, it’s not like I was being abusive, or even raising more voice. I was perfectly calm and collected.) I explained the situation, the urgency, and they took my number and said they’d get the nurse to call me back. They’d been chasing her up for weeks now, but she wasn’t signing anything off and they didn’t know why.
The nurse does call, this is the first she’s seen of Adam’s form she says. There is no date booked in for his injection or scan. And they have to order the MIBG dye in advance and it takes a few days. She’ll see if there’s anything they can do.
She calls back a bit later, around noon, and it turns out somebody didn’t turn up for their scan yesterday, so there’s MIBG that expires at 1pm. So can we bring Adam straight to the Marsden and we’ll go from there? Hurry, hurry, hurry - time is of the essence all of a sudden.
But, of course, Adam isn’t even dressed. He’s at home, off school with a cough and cold. And he hasn’t had any potassium iodide to block his thyroid. So no, we can’t bring him there straight away and have him injected by 1pm. That would be crazy, you’ve had a fortnight to sort this out and that’s the only thing you can come up with.
Which means we won’t be having the scan before we go to Germany on Saturday.
In the words of a particular Catherine Tate character: “What a load of old shite.”
But it’s not all bad … if we want to the hospital in Germany have said they can do the scan at a day’s notice. And what’s more NHS Surrey will still be footing the bill for it!
Okay, now that I have some more time and my head is clearer, I wanted to really fully explain just what this treatment is that I’m going to get, because actually, it’s kind of awesome.
MIBG: metaiodobenzylguanidine (1-131 MIBG)
for those out there who were curious. I’ve known about this stuff for 10 years and I still don’t remember that name. Heck, most of my doctors don’t know it by its full name. It is strictly MIBG.
What it means to me is, it’s a radioactive liquid that is delivered to me in a lead-lined syringe, often locked in a lead box, by a specialist wearing full protective gear…and then it is injected into me. Oh yeah. This shit’s serious.
Actually, it’s always felt super easy to me. It has been used for many years as a simple diagnostic imaging tool - meaning it’s the contrast liquid that gets injected before a scan, also called MIBG. The cool thing about this particular scan is that this liquid is only absorbed by very specific types of nervous tissues - in particular, it is absorbed by the cancerous nerve cells that are neuroblastoma - my type of cancer. In essence, when I’m injected with a small amount of this stuff, it will stick only to my neuroblastoma cancer cells and make them glow under the right machine. This makes it a really fantastic diagnostic imaging scan - it takes extremely accurate photos of where my cancer is, how big it is, even how active it is. The scan is pretty easy too; I have to get the injection 24 hours before the scan, and then I lay down on a board, just like with a CT scan, and have to lay still. It takes about an hour in total, but it’s always been easy because the radiologists will set up a TV and DVR so you can keep your head tilted to the side and watch a movie for that period that you are on the scan machine. Other times, I fall asleep. This is really the easiest scan I have ever done, and I have had just about every type of scan out there.
But MIBG therapy is a relatively new idea. One of the top doctors of my team at the children’s hospital I go to headed this project based around his idea of “what if”: “What if we were to inject a LOT of this radioactive liquid into a patient? We know it only sticks to neuroblastoma cells and can make them glow under the scan. But could it possibly do more than that if we give more of this radioactive liquid to a person - would it act like radiation does and kill the cancer?” So they tested it out, and lo and behold - it seemed it was doing just that.
At this point in my life, I was 14 years old, had already gone through 5 rounds of IV chemotherapy that had left me extremely weak and hadn’t helped my cancer at all, and things did not look good. We were willing to try new experimental medications.
I was the 10th person in the world to try this MIBG treatment. I was monitored very closely, and it was very intense. This procedure was unlike anything else I had ever even heard of: I entered the hospital room I was told I’d be staying in for at least 5 days, and EVERYTHING was covered in plastic. The floors, the walls, the ceiling, the doors, the windows, the tabletops, the bed, the mini fridge - everything had plastic wrap around it. The walls themselves were made of lead, as was the one door. There was my bed right in the middle of the room, and there was a fold-out chair/bed where my mother would be staying with me - but it was also behind a slanted lead wall. I could see her if she was standing up behind it and I was sitting in bed, but not if we were both sitting down on our beds. There was a Geiger counter above the bed, and my mom was asked to wear one as well - over the lead-lined vest she would wear for the next 5 days. She was not allowed out of that room for fear of her contaminating any other parts of the oncology floor or hospital with leaked radiation. She was stuck in there with me, good or bad. She was also instructed how to administer basic things such as pic-line flushes - while she leaned over her slanted lead wall to just barely reach me - so that the nurses did not have to come into the room any more than could be helped, as they also did not want to leak radiation into the rest of the hospital. Any time they did come in, they wore full protective gear, and took it off right outside my door on more plastic wrap.
Once again, this shit was serious.
But mostly, it was boring. I was given one big mega dose of MIBG right on the first day, and then that’s it, that’s the full treatment. But the thing is, that big mega dose had now made ME radioactive. I was stuck in that room until I was no longer radioactive, and anything I touched was literally going to be considered toxic waste: it would have to be thrown out in a special container. So for many days, I sat in a plastic-and-lead room with only a TV, desperately waiting to be less radioactive. How does one become less radioactive, you ask? I’m so glad you did, because the answer is just so glamorous: you pee it out. Seriously. The biggest and fastest way to drop my radiation levels was to just keep peeing. That first time, I was even given a catheter and pumped full of fluids so that I’d go almost constantly, and that urine? Extremely radioactive. Gotta tell you, I was a bit disappointed; it wasn’t neon green, it looked entirely normal. Can’t even get the cool side effects.
It took 6 days before the Geiger counter gave me an acceptable number and I was allowed to go home. After that, things were relatively normal….except now my body had decided to stop creating its own blood and I had to go in for blood transfusions every day for the entire summer. But besides that, I was great! Oh, weird thing about being an early experimentee: my blood, when it did decide to start making itself again, began making itself larger, as in, the red cells themselves are larger now, individually, than they were before. No one’s been able to explain that one, but thankfully, it’s never been a problem. Just an odd quirk. I have larger blood cells than you! Don’t think that taunt is gonna work on the playground.
A few months later, I was allowed to get another scan - MIBG scan, of course. Miraculously, it showed almost no cancer. I had gone from desperation to suddenly being better than I had in years. I truly see it as a miracle.
Unfortunately, neuroblastoma is known for being tricky, and it did come back, and I’ve been fighting it for 10 years now. I got the same MIBG therapy again one other time, back in 2009, at another point of desperation, and once again, it helped a ton. Since that first time I got it, they’ve lightened up a little about certain things - for instance, no more catheter, they trust you to go yourself. Nice of them. There was a bit less plastic in the room - I believe the floors, oddly enough, were plastic-free. And they also changed the way they dose patients now, so while you do still get a large dose of MIBG, it is less than what I got the first time, and not given all at once. But the basic procedure remains the same: lead room, no going out once you’re in, Geiger counter, go pee, be bored, bring paperbacks you can throw away, and once you’re out, you’re going to be looking at a lot of blood transfusions for a while. But all in all, this was a relatively easy treatment.
And once again I’m desperate. This time is a bit different, because both times before, there was a lot of hope that they would help. This time, we’re not sure it will help at all. Because this is a radiation, even if it’s not the traditional laser-beam radiation, it still shares the same basic principles as to how it attacks the cancer. Unfortunately, I had the regular laser-beam radiation, and my cancer still grew, which suggests my body is becoming resistent to radiation as a treatment. But it’s helped so much in the past, that I can’t help but hope that maybe it can do it again. It’s worth the try. I literally have no other options right now. That’s what makes this different. That’s what makes this scary. But I can do this therapy again. I know exactly what to expect. I am ready for it. And I need to try.
I had my scan this morning. It was originally supposed to be one full body scan and one 3-D scan of the abdomen. However, after they did the full body scan, they came back and said instead of having one more to do, I had 2 more. They did 2 3-D scans, starting at my chest cavity and going all the way down to my pelvis. I have no idea what prompted them to change their mind since before the full body they told me they were only doing the 2, but something did. Since they went that far down, I’m wondering if the cyst on my ovary is what made them want to do that. But who knows at this point. Each scan took 45 minutes, so by the time they finished with me (with breaks in between the 3 scans), I had been there about 3 hours. I actually did better pain-wise through that than I thought I would. I remember the pain being ungodly horrible during the MRI I had forever ago because I couldn’t move, and I thought the same would be true today, especially after they said they would be strapping me down to the table to keep me from moving. I was hurting quite a bit by the time the 3rd scan was done, but not as bad as I would have expected. So I was pretty happy with that. I’ll take whatever victories I can get. I’m sure I won’t hear anything about it until Monday, especially given it’s 4:30. I also got the impression from my doctor that he would be gone the rest of this week, so yeah. But whatever…it’s done, and at the very least, if nothing comes from it I should be able to put these questions to rest.
I really want to go home. I’ve been here for 2 weeks and still have to stay until next Wednesday. I always get homesick when I’m gone too long. Hotel living is not for me.
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Medemblik – Zo. Even een update vanuit Amerika. De eerste onderzoeken met de MRI, MIBG, CT scans en beenmerg punctie hadden goede uitslagen en Nathaniël was dus gelukkig nog steeds vrij van neuroblastoom.Wel had hij pijn van de punctie. Deze week Is er een begin gemaakt met kleine pillen die Nathaniël z’n zenuwstelsel lichtelijk verdoven, ivm de pijnen die de immunotherapie met zich mee gaat…