I am... Radioactive Man!!!

Today was the last of my pre-treatment testing - a PET/CT scan at the Marsden. As far as my understanding goes, a PET is essentially an advanced form of CT that can show not just a static picture, but activity over time within cells or whatever. Apparently, once my treatment has done its thing, some lymph nodes may remain somewhat enlarged, but being able to compare PETs from then and now will allow them to confirm that there is no remaining cancer activity. Or something like that. It's complicated stuff!

The day didn't exactly start well - I managed to sleep through my alarm (set at 7 o'clock) and instead woke up at 8:35. My appointment was supposed to be at 9. That my not seem too bad, but to quote the letter they sent; "It is imperative you arrive on time for your appointment as the radioactivity has a very short shelf life. If you are late for your appointment we may not be able to proceed with your scan." Aaaaaarrrrgggg! So, threw on some clothes, splashed some water on my face and ran out the door... called them en route to say I'd be late, they said it should be fine as long as I was there before half past - I arrived at 9:20 - phew!

Went prettymuch straight through to the 'Injection Room'. In here I had to put on the lovely medical gown and rather thred-bare hospital dressing gown - nice - and lay down on a bed. Like with a CT scan, a PET requires the injection of a contrast to enable the machine to get good images of certain areas, but the PET stuff is apparently rather more radioactive. I could tell this because when the nurse brings it in to inject, it comes in an impressive looking metal carry-case thing, about the size of a small shoebox. And then when she took the needle itself out, it was encased in a chunky metal (lead I suppose) surround, about 5cm in diameter, which made it look very cool - it was like getting some kind of superhero injection - awesome. And even better, the nurse told me I should avoid children under 5 and pregnant women for the rest of the day due to my radioactivity. Badass!!

The next bit was boring - had to lay still for an hour to let the contrast soak in of whatever it does - they wouldn't even let me read, so the hour took ages to drag by. Then on to the machine. It was pretty cool - like two giant white donuts, the second deeper than the first, with a mobile bed that moves back an forth through both. Had to lay in a bit of an uncomfortable position (just 'cause I had to have my arms above my head, which ain't so good for me right now), and into the donuts I went. The first bit was quite fun - in and out through the first donut (which I think was just a CT) a few times quite quickly. But then into the second donut (the PET), and stop. And wait 5 minutes. And move a couple of inches. And wait five minutes. And.... etc etc, for the best part of an hour. Felt like my arms were gonna fall off. But then it was done.

After that it was over to outpatients for bloodtests, and then just a bit of a wait to see a Doc to sign the consent forms for the chemo, and that was me done for the day.

I was mighty tempted to drive round the corner to Sutton Hospital to visit the maternity department and use my awesome radioactive powers to create an army of nuclear super-children to use as minions in my future evil schemes. But in the end I decided to go home and have a sandwich instead. Shame really, you never know when you might need a nuclear super-child. But then, the sandwich was really good (liver sausage with apple & blueberry chutney), so I stand by my decision!

More soon kiddos,

Radioactive Man out!

Up to date...

On Monday I had my first appointment at the Marsden. I met my consultant, a Doctor Ethel, who was a very nice chap... he confirmed my diagnosis, and talked me through everything again - of course, Doctors don't speak in absolutes, but nonetheless he seemed confident and was a reassuring presence. I also met Nurse Karen who will deal with my day-to-day care, and was also a thoroughly nice person. I was given loads more booklets and leaflets and stuff, and had a bloodtest (soon to be a very frequent part of my life) - and that was prettymuch it for my Monday. Oh yea, appointments were made for next Monday (blood tests & consent forms) and Wednesday (start of the chemo)... also I should be having a PET scan sometime between now and then, which is just a better form of CT scan (flashy new machine, fun).

WARNING: The next paragraph falls into the category of "stuff you may not want to know", but I said I wouldn't shirk from the realities, and I have no intention of doing so. Saying that, if you don't want to know about my fertility, skip the next paragraph, and if you do read, please don't feel the need to mention it to me in person. Ever! ;-)

So, Tuesday was different... One of the possible side effects of my treatment is infertility. It's by no means guarenteed, but it's possible, and I was strongly advised to insure myself against the possibility, so to speak. So it was off up to Hammersmith Hospital (the nearest place that provides this particular service), to get my 'troops' frozen for use in possible future 'action'. Gotta say, it was not a fun experience. You sit in a waiting room with several other thoroughly miserable looking fellas before being sent to what could be the most depressing motel room ever to do your thing. There's a little pine bedside cabinet with 3 drawers full of well used porn (and another with just one drawer, but I didn't want to look in there in case it was the gay stuff! That would be just what you don't need to see in that situation!), and a bed covered in plastic. Unpleasant. Afterward there was a 2 1/2 hour wait for an interview, which I used to go and mope around the giant Westfield shopping centre which was a 10min bus ride away. My mood wasn't good. The interview picked me up a bit (high count and good motility! Woo for me and my manhood!), but then there was over an hour of filling out and signing forms - the legal implications of the whole thing are frankly mind-boggleing. But eventually it was done... except I've gotta go back a couple more times for maximum insurance. Woo... hoo... Oh well, apparently it's easier 2nd time round. And I won't dwell on the others in the blog!

And that gets us all the way to today... which wasn't very exciting. Just went to work, did very little, and by about 1 o'clock felt like I'd ran a marathon. Ah well, at least the tiredness from the chemo will only be replacing the tiredness from the symptoms. And then I came home, and then I had a snooze for a few hours, and then I wrote this. And this. And this... Ok you get the point - we're up to date.

Technical Stuff

Right, I'm not going to go into a whole lot of detail here, there's a stack of info on the net to be found (as many of you already have) - I'll put some links at the end of this post, but this is what you need to look up:

What I have is "Hodgkin's Lymphoma", also sometimes known as "Hodgkin Lymphoma" or "Hodgkin's Disease". It is a cancer of the lymphatic system, which is part of the body's immune system.

I'm at stage 2B. Put simply, the 2 means that I have lumps in more than one lymph group (both sides of neck, both armpits - there's flashy names for them but I can't remember them), but only on one side of the diaphram (i.e. not in the groin). The B means I have other symptoms, which I've mentioned. It's better than 3 or 4, but not as good as 1. Shocking huh?

The treatment I'm going to have is ABVD combination chemotherepy. It's a drug based treatment based on four drugs, to be given on one day, with 2 weeks break, then again, then 2 weeks... etc etc. One "cycle" is two lots of 2 weeks, so 1 month, and I'm almost definately going to be having 6 cycles - so 6 months of treatment, 12 lots of chemo.

My treatment and and any futher testing I require will all be conducted at the Royal Marsden Hospital in Sutton - they're probably the leading cancer hospital in South England and they're only a 20 minute drive from home, so that's a stroke of luck I guess! I'll be an outpatient, based from the 'Bud Flannegan' outpatient department.

Good websites for those who want more info are:

www.lymphomas.org.uk

www.cancerbackup.org.uk

...and of course Wikipedia's good, although perhaps not quite as reliable. If anyone finds any others they think are especially good please let me know & I'll add them to the list. Thanks to Lex I've also got scans of all the literature I've been given by the hospitals, so if anyone wants that I can forward it on, but most of it is repeated on these websites anyway.