No sleep till Brooklyn!

Well, chemo has slowly dragged on.  It hasn't made me feel bad particularly.  I've been tired and not wanted to leap tall buildings in a single bound but the previous CHOP chemo made me feel worse.  The rub here is that you are wired up 24/7.  There are 4 lots of a drug called Cisplatin that you get for 96 hours, accompanied by loads of fluids (as it is a bit of a nasty sucker to your insides if let loose on its own).  Now, the annoying thing about constantly getting fluids fed in, as I've gone on about before is that they start to bloat you out unless you can get rid of them.   They give you some drugs to help get rid of them, but it's an ongoing drudge.  Anyway, the 96 hours is getting near to an end and my grumpy mood (obviously noticeable as my wife has bought me a Mr. Grumpy t-shirt.  Thanks love).  Also, both a plus and a minus are the large steroid doses used on this chemo.  Plus side, I've always responded well, so yay there.  Downside, if they are given late they can stop you sleeping.  Mine were given late, as the infusions were going on so long (on and on and on...!  You can tell I'm not the most patient person in the world).  So, first night, no sleep, just mad thoughts that wouldn't go away.  You think of one thing and go off on a tangent and then another and then another, until you pull back and think "I WANT TO GO TO SLEEP!" and then a thought about sleep, e.g. a film that had sleep in the title comes to mind and away you go again.  Thankfully, I seem to have adapted and was able to sleep okay last could of nights, apart from the regular wakings up to pee in bottles (all urine out has to be measured and compared to fluid in, to make sure it's not welcome to bloats-ville).

That's fluids aside, ooh, lovely fluids.  Or so you'd think!  That brings me to blood.  Apparently my red count was getting low, which would help explain why I was getting tireder.  Now, I really appreciate people who give blood (and I'm glad I got over my cowardice and did myself, before getting ill), as I have now been a recipient (sorry to upset any Jehovah's Witnesses that may have stumbled onto this page, but blood transfusions are the least you've got problems with!  Wow! That was a bit harsh.  A brief aside.  Whilst at home, between treatments two 60+ year old JWs came round to convert me, after hearing their arguments I gave counter arguments to their claims and they were not very happy that I did not just gleefully accept their rather "intriguing" version of the way of the universe.  Have a look at their beliefs, I was amused.  Perhaps I'm over stepping the mark now and should get back to business).  Anyway, I was told I would need a new little cannula poking into my hand as my other 2 lines were busy.  Joy!  A new hole and a hand I can't use properly.  They said as soon as the blood is in we'll take the cannula out.  Cool!  I thought, so that's not so bad.  

"How, long to put the blood in?", I asked.

"About 2 hours, 4 at max"

Blimey, I thought to myself, that's a fair while.  My thoughts were interrupted though...

"Per pack and we're giving you 3"

Lordy!  Upto 12 hours to shove some blood in!  And it ended up taking longer.  Man, this blog is turning into my personal rant zone.  I'm sure earlier posts were all happy and positive and talking about flowers and trees and other crap.  Rah!  Mr.  Grumpy is in town!

Still in hospital!

I've been in hospital since my last post. In that time quite a lot has happened. A quick summary:
* Dark thoughts of doom (not fun)
* 3 days of chemo (details later)
* PICC line in my arm
* Arm the size of an elephant and the colour of a babboons bottom
* Coughing till I'm sick
* And.... hospital food!

Got here wednesday and was scheduled for a PICC line being put in on friday. This is a tube that starts at your elbow, goes inside veins, along your chest and empties the other side. Having it put it was like being the sausage skin when then the sausages were being made. My arm was already swollen so i think he needed to give it some extra gumption to get it in.
Later chemo started with the Rituximab and a quick infusion of one of the other drugs. All ok.
Saturday was the 24 hour infusion day. Unfortunately when they put in my line they only had single ones whereas I need two, so they had to use the canula in my other hand. Basically this chemo drug is pretty nasty and so they have to load you with masses of fluid and another drug called Mesna, so it doesn't start messing up your bladder and kidneys. Yummy. Now, here's the rub. Getting about 12 litres of fluid means that it has got to go somewhere. They dont want it settling in your body as a)that leads to bad things and b)makes you look really silly. The solution? Everything you drink and everything you pee out has to be measured and checked to make sure its balancing the fluid going in. So, picture me now. I have tubes in each arm, going to drips on either side of my bed. A kind of crucifixion set up. I'm not going anywhere. I'm feeling rubbish, due to chemo, mood, energy etc and don't want to do much at all.
So, the infusion started in the early evening and by night I was getting checked for urine production, as i was falling behind schedule. Couldn't be arsed, leave me alone was my productive thought. The response was to inject a diruretic into my line. It was like dark magic from ancient yore! I felt the rumbling approaching. Stomach to brain, erm, sir, I think we have a situation. Bladder here, I have incoming! It took about a minute before I had to slide my butt out of bed, grab a nasty cardboard hospital piss pot and unleash. Unleash it did. Only just got the next pot in place before reaching the top. Good skills prevailed though. Back into bed after. Now, trying to donate to the pot a little sooner. All was ok until the the pee monitor arrived looking worried again. Quotas not reached. We know what happens when quotas are not reached. Brace yourself bladder outer defenses have failed.
I got through my 24 hour infusion, but in this time being stuck in bed, there was a certain other body function that had been neglected but was not about to be forgotten. My second line was removed and I could be vaguely mobile. I stood up and the alarm went off. This is a 5 second bowel unload warning. All other protocols are disregarded. 5..4..3..2.. I hobbled like the wind, dragging my other attached drip with me. Thankfully all attrocities were averted.
Being bed bound so long and received big dose steroids has meant my legs have become pathetic and like chicken legs. Walking ceased to be the natural talent I've had for many years and became a new skill to learn. Very perturbing. Slowly lowering yourself out of bed onto swollen feet that look like skiddoos. Then wobbling left and right to get balance, then performing the nursing home hustle, throwing one disobedient leg forward then the next. This wouldnt be so bad, but I had a cough. This cough began when I changed position radically and each burst got worse until I started to gag and finally be sick. So, I had to time my expeditions so that I could be back and still before hitting the gag zone.
The cough has lessened right off, but still loiters a bit. My right arm is still swollen and red but not as bad as it was. I was sleeping with it suspended in a sling in an attempt to help drain fluid away. Stupid fluid.
There's more, but this post is too long already. I will hang fire, reload some vitriol and engage again later, may be mentioning some of the good points (there have been good points, e.g. my boss visiting with loads of home made brownies and more importantly getting a sneaky 3G dongle to me so I can get online, yay, online again)