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!)

Diagnosis: Part 4... if anyone offers you an improptu bone-marrow biopsy...

...tell them you're busy that day!

At Mayday Haematology I saw a nice Doc who talked me through some more tests I was gonna have. In retrospect I think she may've hinted to me quite heavily what it was looking like - being a specialist, and with the symptoms I was presenting by that point (tiredness, increasingly bad night-sweats, the aching pits, and some random itchiness), it must've been quite obvious what was going on, but she never actually said the 'C' word (or the 'HL' words) so I think I kinda subconciously ignored the subtext.

From then things moved on at pace - that appointment was on Tuesday 27th Jan - she booked me for a return appointment 2 weeks later that was gonna be my diagnosis, with various tests to come in between. 

(As a side - I've gotta give props to the NHS - the amount of times I sat in waiting rooms listening to people complain about having to wait an hour or something, but the fact is - it's bloody free! And every single member of staff I've met has been polite, friendly, and professional. And when I needed tests in a hurry, I waited just a few days for tests that would normally take weeks to arrange and conduct. I just can't fault it)

The first of the tests came on the following Friday. I was expecting to have a needle biopsy on one of the lumps on my neck, but as it turned out they decided to just do a full biopsy the following Wednesday. Instead I had the bone-marrow biopsy. This was a delightful procedure that involved jamming a rather large needle into my hip bone, and kinda jiggleing and scraping it around to grab some bone marrow. When I met the nice lady Doc who was gonna do it, she used the classic phrase; "hopefully it won't be too excruciating!" - nice! As it turned out, it wasn't really too bad - certainly not pleasant, but coulda been worse. The best bit came when she did the whole thing, then said "oh dear... that's not going to be a big enough sample - we better go again". Awesome.

Next (other than more blood tests - surprised I've got any left!) came the full lymph biopsy the following Wednesday, along with a CT scan. Lex was good enough to come along with me for the whole day, which was cool since there was a whole lot of waiting around. The CT was quick and thoroughly unexciting. They injected me with some contrast stuff that gave an odd sensation of warmth all down my body, and a funny taste in my mouth, but it didn't last. Then you just go in and out of the big donut machine a couple of times and that's it. Took less than 10 minutes. Dull.

Next the long wait for the biopsy, which was gonna be under a general aneasthetic. It's the first time I'd had any surgery, but it's only a very simple one & I trust the Docs, so I wasn't too worried. Finally the time came - I had to put on my oh-so-attractive patient's gown, and was lead to my trolley and laid down. The aneasticians (I'm not even gonna pretend I can spell that), took me into their room, stuck in the canula (temporary little thing that lets them put in drips & whatnot), and injected the stuff, and boom - I was out like a light.

Woke up what seemed like 2 minutes later, a bit groggy, & gradually realised I was in the recovery ward. They'd decided to go for one of my under-arm lymphs (for those who don't know - I didn't - there's, like, 50, in each place - so 1 going really doesn't affect anything). I quickly realised my (left) pit was aching like a mofo. Asked for painkillers once someone realised I was awake, but was told I couldn't have any 'til I was moved to the day surgery ward. That happened some amount of time later (could've been 10mins or an hour, I really couldn't say), but once I was there a nice nurse quickly gave me tea and biscuits (I'd had nothing to eat or drink all day, and by this point it was early evening), and, more importantly, a badass little painkiller that sorted me right out. A little while after that Lex was alowed to come in and wait with me, and eventually they gave me a box of good painkillers (but not as good as the nurse's ones!), and I was discharged. 

So then it was just another week's wait for the results.

Dignosis: Part 3 - testing... testing...

...Early January and the tests began. It started pretty slowly, first a couple of blood tests at Mayday Hospital, then a couple of weeks later an Ultrasound Scan, which was quite cool since it was at a super-posh medical centre in Canary Warf of all places (amusingly, when the NHS rang up to book that test, they first offered me a local appointment - on Febuary 16th - until I said I didn't mind travelling for a sooner test. Just to think, I could've been that far behind now, crazy - so some advice, it's always worth a bit of inconvenience for quicker results). At the time I misinterprited what they said to me somewhat and assumed it wasn't anything too serious. Wrong!

At about the same time all this was happening, I also damaged a muscle in my chest lifting something at work. I think now it was probably due to moving oddly due to the lymph stuff, but at the time it just hurt like hell, and confused things somewhat. So next came a chest x-ray, at Mayday, and more blood tests.

By the time the results from all that stuff were back it was late January, and the GP decided it was time to refer me on to Mayday's specialist Haematology department. I still didn't really know what to expect, but I guess I thought it was just some crazy virus or something. It took a week and a bit for the Haematology appointment to come up, but then things started moving more quickly...

Diagnosis: Part 2 - lumps!

So... the next thing game along in mid-December... I started to find lumps in my armpits - the left bigger than the right, but both fairly noticeable. I can't quite remember if they ached at the time, I don't think so - they definately have since though. At first I was fairly dismissive of them - I knew they were probably something to do with the lymphs (not that I really knew what that meant), and a few quick net-searches suggested they could come up to fight an infection. I'd had a cold, so thought it was probably just that. 

Then just before new year (December 30th to be precise) I noticed lumps on the left side of my neck. It's funny, I never really noticed them growing, they were just there, all of a sudden. They're kinda marble sized, several of them, just under the skin at the base of the neck. That got me worried. Of course, being new year & all, I had to wait until Jan 2nd to go to the GP, but go I did... and then things got started...

Diagnosis: Part 1

Ok, I'm gonna start with a few posts detailing how we got to where we are now, for the benefit of those playing catch-up.

The very first sign something wasn't right came on late last year -  Novemberish I think - I actually didn't think it was related right up until I got the info booklet with my diagnosis, looked at the symptom list, and had a "Ahhhhh, I seeeeee" moment. 

What it was, was a small hard lump thing - not very raised, but noticeable, in the middle of my chest, right where my sternum is. And the funny thing was, it ached when I drunk alcohol. Even just a half glass of wine got it going. So eventually I went to the GP with it. He just said I'd probably just done something to it at work (for those who don't know, I lift a lot of furniture & stuff around), kinda laughed off the alcohol pain thing, and said to take some ibuprofen.

Can't really blame the guy - alcohol pain is apparently a very rare symptom, and of a disease only 1500 people a year get in the UK - think it's quite possible I'm the first case he's ever seen, a diagnosis woulda been 'House' like, & while Croydon doctors are very pleasant, 'House' they aint! So anyway, I thought little more about that... next came the proper symptoms...

...but, they can wait for tomorrow, I'm going out! Since no-one knows this blog exists yet, I'm sure no-one will mind! 'Til tomorrow...

Hello world

Hey everybody... just a quick first post to say hello, and thanks for reading. I'm gonna try and keep this as up to date as I can, but those who know me will know I can be a bit slack, so apologies in advance if I don't get a chance to update for a few days - do not fear - there'll be something coming soon!

Also, I'm not gonna shirk away from describing stuff during the treatment, however unpleasant it may be - I'll put warnings if it's gonna be nasty... hopefully there shouldn't be too much of that at all... but anyway, beware (and man-up, mate!)... 

And lastly for my first post a few thanks:

Badger & Jon, who knew things weren't right earliest of anyone - thanks just for knowing - it's good to share as they say and you guys were there for me.

Alexia - too much to say here, sufficed to say, you're awesome. Love you babe.

The Gang - Millo, Blu, Jorge and Bo - your support is and will continue to be massively appreciated, you guys rock.

Etta - thanks in advance for the straight-to-the-point advice that I'm sure I'll be getting long distance thru the year!

Bill - for being a wonderful soppy bastard and offering to come back - from bloody Australia! Love ya you mentalist!

And my family, who've all been great... I know I don't see y'all as much as I should, but knowing you're all there for me is a great relief. Thanks! 

Right... lets get this show on the road...!