Chemo Day 1

Well, yesterday was day 1 of my chemo...

Got to the Marsden in good time for my 9:30 appointment. Was called in quite quick to have a canula put in (the vein-valve kinda thing that makes it easy to give multiple injections / drips without making me look like a pin cushion), but was then told that my drugs wouldn't be ready 'til about 11:30, so Denise (my driver for the day - much appreciated!) and I went for a drive and got a couple of bits of shopping that needed doing.

Arrived back just in time to be called in for my treatment. I get to sit down in a nice comfy chair (a recliner - woohoo!) and a nurse gives the 4 ABVD drugs. First is a bloody-great injection of red stuff, next a smaller clear injection, then one drip/infusion given over a few minutes, and finally another which takes about an hour. All together the process took about an hour and a half, although I was able to read my book so it was fine really, the time flew by.

Afterwards I felt fine - they didn't have my various take-home pills ready so asked if I could go down to the pharmacy myself for them to speed things up, so did that, and was told there would be about an hour's wait. Denise and I went and had a sandwich and a hot chocolate in the cafe, and by the time we'd done that they were ready and we headed home.

On the drive home I started to feel increasingly queasy - just like motion sickness really... managed to make it home and lay down, which made me feel better, but still not quite right - started to think I was ok to sit up (halfway through typing the previous post)... turns out that wasn't a good idea - luckily Denise had brought me a 'just in case' bucket a few minutes earlier! Anyway, was just a little bit sick, and felt better almost immediately afterwards.

After that slept for a good few hours. I felt ok in the evening, just very drained, but managed to eat some dinner, which was good. This morning has been ok, feel a bit like I have a mild hang-over, but it's not too bad at all. Have had breakfast and taken my selection of pills, and all seems to be well. 

So that's all for now... hope everyone's having good days! laters, b

Back home....

Hey,

Back in one piece from first chemo. Felt fine directly after but car journey home brought on some nasty nausea.......................................

.......................ok, not just nausea, was just a bit sick... will do a full accout later, right now I gotta sleep.

(Don't worry, I feel better now it's out... )

b x

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!

Just a quickie...

Hey folks...

Just a quick one since I haven't posted for a couple of days... not much going on - saw my sis (Tessa) and niece & nephew (Maia &  Billy) down from Malvern (far away) on Thursday, which was nice... Went back up to Hammersmith on Friday (will say no more)... And down to Kent with Lex today to see, and tell, my Nan, which was really hard, but good in the end.

And that's all, no other medical news other than a firm booking for my PET scan on Monday, which I'll enjoy describing afterwards I'm sure...

Right, I'm off to bed and the crazy night-sweats that come with - in fact I might just sleep in the bath to 'cut out the middle man'!

Keep well, b

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.

Diagnosis: Part 5 - not a good result

So Tuesday 1oth came along and Dad & I went to Mayday for the appointment to get my diagnosis. I don't think either of us really believed it was going to be something so dramatic, but it was a nervous wait nonetheless. Ironicly enough, with the painkillers I'd had in the week since the surgery, I'd had one of my best weeks since Christmas, with reduced symptoms & sleeping well, which was something at least...

We were called in and met a new consultant - apparently the one I'd met the first time had been called away on "emergency maternity leave", which was a little confusing since I swear she was stick thin when I'd last seen her 2 weeks before - random. Anyway, the new guy was nice enough, but he didn't mess about, straight to the diagnosis: Hodgkin's Lymphoma, reasonably early stage - he made it clear that it was very treatable, and then went on to talk through the basics of the chemo and what was to happen next. Dad and I just sat & listened - I think we were both in shock really. Dad only asked one question; "so it is a type of cancer?" - I already knew the answer, but I think he needed to hear the doctor say it. An appointment was made for the following Monday at the Royal Marsden (cancer specialist) Hospital in Sutton, and we left.

We drove home quietly. Of course, there were some tears as you might expect. When we got home I started making calls to let people know - the first of these was really hard - I think saying it out loud makes it more real. But as I spoke to more people throughout the day and it started to sink in it got easier, a feeling which continued over the next couple of days. I know everyone takes things differently, but it didn't take as long as you might think for me to arrive at the mindset that I've got this thing, good professional people are going to give me the best treatment science can offer (and I do love science), it's going to be hard for a good chunk of the next year, but then it'll be gone, and life will go on, and it'll be good. And that's where I am now, and hopefully where I'll continue to be.

And that's it for the diagnosis flashbacks (although I have got one more scan to come at the Marsden, but that's still in the future at the moment!)

Last weekend was Valentines day. I had a truely wonderful day with my beautiful Alexia. I know you guys probably didn't need to know that, but I felt like saying it, so Ha! Value your good days when you get them people! (and get your flowers from Floral Hall, West Norwood - best in South London!)