Knock, knock... Whose there?

Hello,

I know some people out there that are reading this blog, but it'd be nice to know who else is.  If you get a minute can you click the "comment" link under this post and leave me a note saying hello?  Be sure to leave your name and I'll be a happy chap.

Thank'ee kindly,

Rich

Achtung! Escape is impossible Englander!

Not so Fritz!  

I'm out!

On Friday, just gone, I was released from hospital on weekend leave, I guess that is like parole.  I was visited by my friend Steve, his girlfriend and their little baby Jack, who I hadn't seen yet.  Being a bloke I just thought, hey, he's my mates baby, cool.  My wife on the otherhand went all gooey!  

"A baby, baby!", she exclaimed.  She then used any excuse or trick to remove said baby from either parents grasp and into her own.  Cooing and ahhing at baby Jack all the time (until he cried, at which point he was handed back).

Basically took it easy on the weekend.  Got looked after and spoilt by my wife, who bought me little treats (yay! go treats!).  

On Sunday evening, I was dropped off at the in-laws, where I would be staying a few days, rather than be sat at home on my own.  

Monday I had to go back into hospital, to have blood taken, get the dressing on my line changed (it had started leaking some blood back and looked horrible) and hopefully to have a CT scan to try to determine what was going on with my arm (and for the docs to have some more pictures to play with.  They like pictures).  

The hospital system really sucks when it comes to getting scans etc done.  It is all done on paper and is a bit random.  They give you a provisional day when you will be done and say they will contact you when they need you and then you hear nothing.  Basically, if the consultant has a more important one to do (in their opinion) then they just bump you down the list.  The best way around that is to make sure that your consultant is harrassing them.  The squeaky wheel definitely gets the grease.  Better still, if your consultant is their mate, then that can prove a winner.  One of my doctors seems to have a bit of power over the CT scan consultant (either she has some dodgy pictures of him or he is just besotted with her), as she seems to be able to make CT scans happen pretty quick.  I was sat in my room, bloods had been done, was expecting a few hours wait when a funny little man with an unusual greasy comb over arrived with a wheel chair.  His name badge identified him as Keith (name changed to protect me from retribution from the greasy haired hospital porters union.  A powerful entity, you don't want to mess with).  He collected my notes and I hobbled into the wheel chair (they don't let you walk, but in my case right then, I was happy to be wheeled).  He zoomed me to the CT scan waiting area (here I am redefining "zoomed" to mean trundle at a very slow speed, with pauses for coughing and regaining of breath).

The CT scan waiting area was a breath of fresh air.  Actually it is pretty rank.  I think the walls were last painted their jolly nicotine yellow many years ago.  Also waiting were 2 other people in wheel chairs.  One who looked like they may have slipped away whilst they were waiting.  They were sat with their head lolling.  Later snores revealed they had somehow managed to fall asleep in such a position.  The wheel chairee next to me either was sniffing or sobbing, but they were so close that I didn't want to turn and look.  

Time passed and wheelie 1 and 2 were taken in and after a few minutes came back out, waiting for their miscellaneous porter to come and return them whence they had came.  This meant it was my turn.

I was wheeled in, then asked to climb onto the bed that feeds through the big doughnut that is the CT scanner.  Sadly the line in my arm was no good for use with the machines automatic dye injector, as "the pressure can cause them to explode" (reassuring!).  This meant that I had to have a new canula put in.  I informed the scanner man, who I knew to be the consultant, that I was pretty short of good veins.  He smiled and said that he is good at putting in canulas and not to worry.  After a few minutes hmmm-ing and arrrr-ing, he agreed that I didn't have many decent veins left.  He suggested trying one on my hand, informing me it'd probably hurt.  He asked like I had a choice, but before giving my consent (or not), he had produced a big old canula needle thing and was jabbing away.  After a few jabs, he had a canula in, but the vein bulged up behind it and it was no good, so that had to go.  He apologised profusely and said he normally gets it first time (I'm getting used to hearing that).  Second time was a charm.  It hurt but it worked.  I was left with a nice spurting of blood up my arm, but that just made me feel manly, so was okay (!!).  Consultant man commented that I was very cheery and upbeat.  How could I be anything else, when I was getting holes jabbed into me?  

The rest of the day ticked on.  They came and changed my arm dressing and then time passed and then my doctor came in.  She told me that the tumour had shrunk very very slightly, but they don't normally measure at this stage.  The fact that it is not getting bigger is good but not to worry about shrinkage at this point.  The scan also didn't show any reason why my arm was still swollen.  Scotland yard were still baffled.  She then said that they will take my line out (hooray) and let me go home properly (until Friday).  After more waiting, my line was taken out.  A process I was a bit nervous about, but which took seconds and was pain free (nice change).  I have to report back on friday, to have a different type of line put in (Hickman line).  This cheeky sucker goes in the chest, which sounds a lot more attractive.  Then, assuming all goes to plan, it is my last cycle of RICE.  

So, I've got a few days of normality (kind of), until once more summoned unto the realm of the physician.

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)

Oh Crap! Bad News!

Well, I went in to see the consultant today. I was pretty anxious, as I've been noticing dodgy little symptoms, similar to what I had at first diagnosis. Shortly after going in he told me that the news wasn't good and that the scan showed that the tumour had been growing again. The bastard! Why can't it just die!
Anyway, this means it's plan B (sadly there are no plans C or D, so plan B better work!). This involves going into hospital (where I'm heading shortly), where I'll get a line put in (a tube in a vein) (which I'd been hoping to avoid). Then there will be a 3 day chemo infusion. This regimen is called RICE. My last one was CHOP-R. Then it's 3 weeks off, then back for another RICEing, then 3 weeks off. Then there is a scan. If the tumour has shrunk, it is on to step 2. If it hasn't then...oops, sorry, we're out of ideas. Bye. Don't like the sound of that much, so lets assume it works. Next is a loads of injects to get the body producing extra stem cells which can then be collected. In to hospital then for 4 days of hardcore chemo. This one will blast away my poor immune system and bone marrow that would regenerate it. Hopefully it will also nuke any remaining tumour. Then the previously collected cells are returned and they magically recreate a brand new shiny immune system. Hoorah. Apparently the success rate isn't amazing but it's not rubbish either, but I need to talk to the big man total specialist dude to get those details. So, the boring journey continues. Not sure when I can post again, as hospital beckons.

Not happy :(

I'm back to work, but not feeling that good. My stomach has still been giving me grief and I've been getting this weird double vision type thing going on after I wake up (continuing until it kind of sorts itself out).

I thought I'd be pretty chilled regarding my first scan, but little things keep happening that are freaking me out a bit. Yesterday my right arm seemed to be swelling up a bit. This was what happened on my left arm and was caused by the blood clot. I neither want another clot or for the swelling to be due to growing lymphoma. No sir!
Its a bit tender and it seems to be a bit swollen around the forearm only. I'll keep an eye on it.

My previous upbeat (at least I think it was pretty upbeat) mood is starting to fade. I'm getting fed up now and just want to feel well. Hit a bit of a low.

Stupid Stomach

It's been a number of weeks since my last treatment but rather than feeling better I've been feeling rubbish. As of today, I feel a bit more energised (read that as: don't just want to sleep (not that there is anything wrong with sleep)).
My stomach has been the biggest offender. Not that it is that big or weirdly shaped or anything (at least I didn't think it was. I feel the need to check it now, due to pure paranoia!). After my anti-biotics were completed, it started hurting quite badly pretty much constantly and my energy dropped right down. Now, a few days later, it seems to be starting to settle.

I've got my CT scan on monday, a blood test on wednesday and will be seeing my consultant for the results on friday. I'm hoping it is smaller than last time but understand that it is not expected to be all gone (dead tissue and scar tissue left behind) due to the type of tumour it is.
If all goes well, a couple of weeks after I will get a PET scan, which will determine if anything left behind is still active (bad) or dead and buried (yay, die tumour scum, die!)

Fingers crossed.

Last Treatment

Yay! Yay! and thrice, yay! My final treatment (a non chemo one at that) was on Friday just gone, so I have finished my primary treatment. Lordy, it's been a long old slog. Now it's scanxiety time. I've got a CT scan on August 18th. They expect, due to the type of cancer I've had, that there will be tissue remaining, i.e. scar tissue, etc. So as long as it hasn't got any bigger, this scan won't be too exciting. Then, a few weeks later I'll be lined up for a PET scan. This scan is a bit more interesting. You drink a drink containing a form of glucose with a radioactive fluorine isotope attached. Sound fun? Basically any living cells, especially naughty cancer ones, will eat the glucose and so drawing in the isotope. What does this mean? Well, it is a way to check whether the blob that remains of the tumour is alive (bad news) or dead (yay! champagne for all!). So the PET scan is the kiddie that I'm waiting for, as it will tell me whether I'm done and normality can start to return or whether it's time for the next batch of treatment (noooo!).

Right now though, I've got a couple of infections and feel absolutely knackered, despite having 11 hours sleep! Apparently I have an e.coli infection and a suspected CDIF infection. Sounds a laugh. I'm got a new load of anti-biotics to take. One has the aftertaste of a chalk coated rabbit turd (not that I've tasted that many chalk coated rabbit turds, but it's what I'd imagine they'd taste like). Worst of all though and this increases my belief that there is a world conspiracy to stop me drinking any beer, is that there is a big warning on the anti-biotic bottle to "NOT DRINK ANY ALCOHOL". Boo! Another 10 days of no beer. So near and yet so far!