Friday, 26 September 2008

Oxford say "no!"

I've been allowed to escape for the weekend, which is cool and the gang.  I'm sat at home, watching my own TV, sat on my own settee and it's great!  No hospital till Monday, but then they want to start the next chemo (4 days early.  I liked the idea of chilling and feeling good for a few days, but hey ho).  Was a bit downbeat today when my consultant said that because I didn't respond to RICE, the cancer squad in Oxford did not consider me for the stem cell transplant and high strength chemo (which is the best shot at really blasting this thing apparently.  It blasts me too, but I get to recover, whereas it should be no more (hopefully)).  The bastards!  The good news though was that he (my cool consultant dude) rang the cancer terminator team in Hammersmith and told them my situation and they had a different plan.  They would go for a cycle of ESHAP (which is what we had in mind anyway) and if I respond at all, even a little bit, they would go for the stem cell stuff.  Hey, Hammersmith gang, I love you.  Oxford turds, you can go and university yourselves!  No, I'm not bitter.
Okay, okay, alright already!  I'll tell.  The hedge incident.  I'd better talk about it now as otherwise you'd have to wait a week or so.
Anyway, this hedge.  Well, we had this hedge and it was a monster.  It ran from the end of the garden, down to near the front "garden" (I put garden, because I couldn't think of a better word to describe the space where the cars park that sits in front of the house.  There is a little bit of grass and a few weeds there too, so it is garden-ish.).  Anyway, the headline to take from this is that it was a long hedge.  Now, not only was the hedge one long mutha f*cker, but it was wide too and as everyone knows, it is all about the girth.  It was about 4 feet wide, so it happily ate about a 4 foot chunk of our garden, for no reward.  Oh yeah, it was also about 7 foot high.  The good side of this is that it meant that we were well shielded from the mad, crazy and insane hound lady and her hounds.  All seems pretty okay so far, when you think about, we have a 4 foot barrier protecting us from infection from the loon next door.  The thing is, it was one ugly thing and after about 3pm the garden suddenly because dark, as the hedge blocked it out.  There were also rumours that various members of the faery folk have been spotted living in it and if there is one thing that I dislike, it is squatting imaginary creatures (apologises to anyone out there who believes in such things)
Nope, the hedge was a pain, not only because it was ugly but because it had to be cut every few months.  If you do it yourself it takes yonks and if you get someone in to do it, it cost a wodge.  For what?  Stupid hedge.  Also, hound lady used to constantly complain about the hedge, demanding that I came and cut it on her side (as she was a pensioner, which is fair enough).
So, here I was walking towards my house when hound lady intercepted me and started moaning about the fence.  No, not that fence, but the fence that was on her side of the hedge.  A fence I never knew existed.  She was saying that it needed repairing and some panels replacing.  Obviously, any mention of fences from her, filled me with fear.  Sam and I had been talking about getting rid of the hedge and if I had to repair a fence I never see or even knew existed, then I might as well get rid of the hedge and fix up the old fence.  I told her this plan and she was ecstatic.  I couldn't believe it, I thought she would moan.  So, on a high, I called in, you guessed it, Steve the fence man.  He was a little reluctant to do anything that was within 100 metres of hound lady, but the hedge extraction operation appealed.  Oh man, this is going to be a long post as there is a lot of ranting to fit in.  Sorry, I may have to save the rest till another day.

Thursday, 25 September 2008

The Hedge Incident and the blood that never stops flowing

I tried to warn you, but no.

"We want to know about the hedge incident, blah, blah, blah!", you said.
So, the hedge incident, eh?  Well, it is quite special in that it features aspects and people from the fence incident included in yesterdays rant.  It is like the fence incident but so much more.  So much.
Lives nearly ended.  Sanity was lost and many people may never be the same again.  Also, the hedge incident hasn't official closed.  One aspect (well, more than one if you went and spoke to mad lady of the hounds and could stand listening to her bitter diatribe for more than a few seconds, before wanting to snap her dry, leathery neck like an old twig (oh! I can hear the sound of it snapping!  Ding, dong, the witch is dead.... oh well, may be one day) ) of the hedge incident remains unresolved (despite regular promptings and whinges from her majesty next door) and as far as I'm concerned will continue to do so.  Anyway, that's enough of that unpleasantness for now.

Whilst lying in bed with a nose bleed that just wouldn't stop (more in a moment, if you can contain yourself), I had an idea.  Let me run it by you.  Do you remember the card game Top Trumps?  Come on,you know you do.  You had a set of cards, related to some subject or other, e.g. cars.  Each card had a picture of a different car (or whatever) on and then there was a list of factoids, e.g. Speed, comfort, acceleration, cost.  Each of these stats had a number rating between 1 and 10 (I think).  To play the game, you would have the cards evenly dealt out and you would pick the top one (or could you choose one?) and pick its strongest stat.  The other people had to have a higher value for that stat on their card otherwise they lost their cards to you.  Probably the most boring game I ever played, as initially I inherited a top trump set from my sister and it was for flowers.  A great was to get beaten up at school.  I used to be a bit of a big time doctor who fan when I was little and my regard for Top Trumps totally turned around when I discovered a Doctor Who version.  Wow!  I could put down Cybermen and choose the stat scariness and win the card for the Krotons (a doctor who monster from years back, who looked like badly stuck together cardboard boxes (which they probably were), spoke in brummie accents (no joke) and whose nasty big weapon shot steam (ooh, scary!) ).
Anyway, back to my idea.  I was sitting here, waiting for some kind of clotting to happen, when I thought what might a bunch of miserable cancer patients, all stuck together in a room on multi-coloured drips need to brighten up their days?  Answer:  Chemotherapy Drug Top Trumps!
It's a winner!  You could have stats for:  Toxicity, Vomit inducing, cost, number of side effects, length of infusion.  I can imagine kids at school playing it.
"I've got Cisplatin.  Vomit factor 9"
"Oh!  That beats my Doxorubicin!  If you had picked heart damage as the stat, I would have won!"
Sounds a winner to me.  What do you reckon?

Yeah, last night my nose decided to start bleeding.  Not something that happens often and normally not a problem, but when on anti-clotting drugs it can prove a bit annoying (and it did).
After going through numerous paper towers trying to stop it, a nurse wandered by, saw what I was doing and told me off for not ringing them for assistance.  She then disappeared and said she had rung the on-call doctor and they would give me some clotting enhancing agent in the morning.  I mentioned I was on Fragmin (anti-clotting agent) and she went, "ooh, hmmm, I had better ring him back" and went off again.  Meanwhile I had a cunning plan.  When I was little and had a nose bleed, I might sometimes create a "plug" for it.  Basically, roll up some tissue paper into a small tube type shape and shove it up your konk, thus blocking the bloods exit.  I did exactly that.  All seemed to be good, until I could see blood around the edges soaking through.  After a while, it had slowed but was still going.  I lay back on my bed with a paper towel in place.  The nurse returned to say they wouldn't be giving any clotting agent, as I was on anti-clotting drugs.  A revelation!  She said the on-call doctor would come and see me though.  By now, I had got the bleed to finally stop.  I laid back in a position, so as not to tip my head or risk starting it off again.  I dozed off.  I was awakened by the doctor who told me my nose had stopped bleeding.  I said I know.  They then went on to ask me various questions about how often I had nose bleeds (rarely), whether I was bleeding from anywhere else (urgh!  no), etc.  They said they would check my platelet counts (the cells in the blood responsible for making clots) to see if I was low and needed any transfusing (I didn't).  They then went away and I could sleep.  So an exciting night was had by all.

Wednesday, 24 September 2008

Love Thy Neighbour (or not)

I'm a bit pissed off.  Not about some ache or pain I have to moan about or some treatment option but about 2 of my busy body interfering neighbours back home.  

You can imagine the stress my wife is under, with me in hospital, a full time challenging job, 2 kids and a house full of builders (we're having some building work done).  I mean, just having me around is enough to stress most people to breaking point.  Now, if you are a normal sane kind of person, you would be able to appreciate this and your immediate thought would not be to add some extra stress on top of this.  Hmmm, that's what I thought, but not so.  Let me give some background.
On one side of us, we have an older couple.  He took early retirement and is enjoying pottering around doing his thing, whereas she still works.  They have some kids who have left home but visit pretty regularly (bringing washing or grandchildren, depending whether it's son or daughter!  I'll leave you to work out which).  Now, they are lovely!  When they found out I was ill and was in on my own, he popped round with some food for me, so I didn't have to cook.  How wonderful!  They regularly ask after and offer if there is anything they can do to help and you know they are sincere.  
On the other side lives the lady of the hounds.  She is knocking on a bit, smokes like a trooper and you can often catch the subtle whiff of booze on her breath in the afternoon.  Her heart is in the right place and I'm sure she means well but she is a bit of an obsessive.  She is animal crazy and has 3 ex-RSPCA rescue dogs.  Somehow the 3 ugliest dogs I have ever seen, but I won't hold that against them.  I used to think she was quite a nice lady, but then there was the fence incident.  
I wasn't going to go into this but what the hey.  So, we own the fence that we share between our two properties.  I must admit, some of the concrete posts that hold the wooden fence panels were looking a bit dicky and she had been whining about them on and off for a little while.  So, I finally got off my backside and arranged for some of them to be replaced.  Steve, the local fencing dude came over.  Now, Steve is a pretty laid back kind of fella (or so I thought!) and got on with the job.  I arrived back home from work to an affray!  Next door lady was having a full on shouting match with him, accompanied by her ever present side kick (nick named mad cat woman), who I've not even mentioned yet.  Apparently, she was accusing Steve and by extension me, with a list of charges:  a) trying to steal some of her land  b) poisoning her plants and making it impossible to grow new ones  c) damaging her top soil.  
Steve was incredulous.  He looked shell shocked and gave the impression that he had somehow walked out of the normal world and ended up in some dark version of Narnia.  So, the complaints in question related to the concrete posts that held the fence up.  At the bottom of each post is a bulb of concrete, which keeps it anchored into the ground.  Steve had uprooted the previous knackered post and plugged the new one in the old hole and then added cement, to secure it in place.  The same hole, but new post and new concrete (which would set and form the plug).  
"Oh no", she said, "the old hole was much smaller.  You have extended the post onto my property" (meaning the few inches of concrete around the base).  She was demanding that half of the concrete plug piece was chopped off.  Although feasible, quite a foolish thing to do, as then the concrete post would no longer be stable and would most likely fall into her garden (no doubt causing uproar and accusations of sabotage and invasion).  Steve has explained to her repeatedly but to no avail, she was convinced.  The other charges related to the fact that the soil had been disturbed (well go figure Sherlock!  We've just had to dig out a concrete post!).  
Rather than tell her to shove it where the sun don't shine, we (Steve and I) came up with an idea.  We agreed to get her some compost, to replace any topsoil (a pretty good deal, which she reluctantly accepted) and to chip off some of the concrete and resit it (a slight fib).  We did this second part, by Steve chipping at some of the concrete around the edge, until she lost interest and wandered inside, whereupon the post was secured, buried and then covered with top soil to hide from peering little eyes.
Anyway, that was the fence incident.  Don't even get me started on the hedge incident, as that totally went beyond belief!  Grrr!  It gets me annoyed even thinking about it.  I may tell you one day, but I think I still have a fair bit of counselling to go!
Right, before I go on, let me introduce the lady of the hounds side kick, mad cat woman.  She is quite chubby, walks with a waddle and lives on her own with too much time on her hands.  She is known to the local police because she rings them so often, reporting trivia.  She had a full on vendetta against the pub landlord across the road from her (for no known apparent initial reason), but she called the police on him several times, putting his license in jeopardy and he had to painstakingly prove her accusations incorrect to avoid problems (through going through CCTV footage, bringing in witnesses etc).  Finally, the police told her to wind her neck in (except in police talk) and he could get on with his job.  Her campaign went on for a good few months though.  Anyway, she is only every seen wearing a stone washed blue denim top and a pair of dark trousers.  If the slightest thing goes passed her house you can see the curtain twitch.  It doesn't matter if it is a plastic bag blowing by on the wind or a small boy on his bicycle (in either case she would probably be right on the phone to the police to either: report the pub over the road for littering or the small boy for being a possible ram raider, thug, hoodie or suicide bomber).  If she is not curtain twitching she is busy-bodying.  What is busy-bodying, I hear you ask.  Well, the dictionary definition has it as:  busy-bodying: verb - to go around neighbouring properties, interfering and generally being a nosey old sow.
So, she might be having a look in your bins or a quick peek through your window on the way by.  She thinks she is protecting the neighbourhood I think, but she just comes across as a nut.
Why the name mad cat woman?  Well, when we first moved in, she used to come and report to us that she had seen our cats outside.  A knock on the door at some bizarre time in the evening and there it's standing.  No hello, just, "your cat was on the road this afternoon".  Not a lot you can say to that.  "Really?  How super." (our road is not a main one).  She would then turn and leave or alternately stand there waiting, for what I never could tell.  Eventually she'd go and all would be well in the world.  So, she would report back to us that our fully grown adult outdoor cats have crossed the road (something they have successfully done many times.  Both knowing that traffic is not to be trusted and cars moving towards them are to be avoided.  Pretty standard cats really).  Sometimes she would take more radical action and you'd see her hand come through the cat flap, shoving one of the cats inside!  I guess she thought you was protecting them.  A bit of a mentalist if you ask me.  
Right, so that's pretty much the background.  There is lots more but I think you get the idea.  Now, back to my wife Sammie.  So, Sammie, worried about me in here, got 2 young kids to deal with, a pretty stressful full time job and a house full of builders.  Yesterday morning she receives a card through the door from the RSPCA inspector.  She rings the number and they tell her in a not too friendly tone that we have been reported for neglecting the cats.  Basically, they said that they had two reports of the cats being left unfed and locked out for up to 4 days at a time.  Sam, obviously was upset but also infuriated (and if you know my wife, you don't want her infuriated).  Yes, she has been away for several days at a time, but when she is away her mum will have the kids and drop them off in the morning, then come by and feed the cats and pick up any clothes and bits the kids might need.  She would also drop by later specifically to check on the cats (she has two herself and is quite protective of them) and then when picking the kids up from the child minder in the evening would stop in too.  If you looked at our black and white cat, you could see he wasn't going hungry (he has been referred to as "the bear" and "the biggest cat I have ever seen in my life").  One of the cats has an allergy, which we have some tablets from the vet to treat but had broke out into a rash.  The RSPCA woman said that it needed seeing to immediately, so Sam took the cat to the vet, who gave her an injection and said another would be needed in 3 weeks (but was not worried).  Sam reported back to the RSPCA woman, who then became very nice (I guess, they have to assume that reported people are guilty as charged until shown not to be) and complimented Sam on her rapid action.  They chatted for a bit and the RSPCA woman said that she thought a couple of our neighbours had some serious issues.  Sam said, "you don't know the half of it" and proceeded to fill her in with some details.  So hopefully, now, we will not be getting any more surprise visits and any future interfering will be stopped at the source.  I applaud people making sure that animals are not being abused, but interfering old crones with nothing better to do than make 2 + 2 = 7 and ring the authorities really annoy me.
Ahh!  The therapeutic effect of a good rant.  If you stuck with me through all that, then well done!

Tuesday, 23 September 2008

Ding, ding, round 3!

Well, scanxiety wasn't around for long.  My consultant came in and told me that despite the fact that the two scans were different, one was a high res scan and the other was something else (I don't remember every detail) and difficult to compare like for like, as far as he could see they did not show the level of tumour response that they would be looking for at this stage.  Great!  Super!  Magic!  

Hmmm, I was not surprised but I was disappointed.  Strike 2.  Apparently, there is a plan C, but with each failed go, the odds get worse.  Good job I'm feeling lucky!
So, no more RICE chemo, this next week or so, I get to try out ESHAP.  This little baby gets given over 5 days this time.  Joy.  One of the drugs is infused for 96 hours.  Sounds nice.  Still, this one features steroids, which the little git seemed to respond quite strongly to, so lets hope it does here.  My fingers are aching from the constanting crossing and uncrossing!  
Roll on ESHAP then!

Wheelchairs and Scanxiety

Stupid temperature!  After 24 hours of it behaving, it decided to ping up again, but its back down now and I'm feeling pretty decent appart from the stomach twisting fear of scanxiety.  I've mentioned scanxiety before (sadly, not my own term, but if no one comes along in the next 30 days with proof of original invention of it, then I'll claim it as my own, damn it, and fight till the death to defend it, hurrah!).

Anyway, why am I feeling scanxiety?  Duh!  Cus, I've just been scanned (some people are so slow, really!).  I was woken up at 6, as per usual.  Blood pressure and temperature were taken by one nurse, who then disappeared to be replaced by another who made sure blood was taken, magic liquids from the hospital apothecary were infused into my line and the normal hospital approved dark rituals were performed, the usual sort of thing.  Then I was left alone for a bit.  I dozed off for about 30 minutes and was awoken by the breakfast trolley.  Not literally by the trolley but by the nurse in charge, who was trying to determine if I was awake (and so should be quizzed about breakfast preferences) or alseep (so she could sneak away, one less ingrate to deal with).  I said "hello" and after a short negotiation was handed two weetabix and left to eat them.  Blimey, it's all excitement so far!  I'll try and calm it down a bit.  
To cut a long and not very exciting story short, I fell asleep again (something I'm getting pretty good at) and was awoken by a rather sturdy looking dude hollowing in through my door.
"Can you walk mate", he asked.
"Not amazingly well, but I can", I replied, wondering what I was getting myself in for.
"I've come to take you for a CT scan.  They said to bring the bed, but if you can walk a bit, then we can get a wheel chair", he replied.
I was a bit confused.  Why would I need to walk so we could get a wheel chair, but apparently wheel chairs are like gold dust and some of the other porters have hidden stashes of them for their patients.  So basically, we'd have to walk the route, hunting for wheel chairs.  Now, unknown to most people, the wheelchair is not a social animal and prefers to spend its time alone, roaming the corridors.  They are however, well versed in urban camoflague and can be aggressive if approached head on.  So, we set off.  After walking down the first corridor we had a sighting.  I could feel the excitement of the hunt.  There it was, in its natural environment.  Beautiful and unfettered.  Graceful even.  My porter approached, keeping to the corridor walls, trying not to spook it.  His obvious experience in such matters coming to the fore as said wheelchair was quickly captured and loaded (with me).  We then headed to the CT scan department.  Unusually there was no queue of faintly miserable people, just me (the wheelchair) and a bloke in a bed who was asleep and very very pale.  I was whisped in very quickly.  Normally they have wanted to put contrast into my vein to show up blood vessels etc, but not this time, just bang on the table, in and out of the machine and bosch, thank you very much.  I felt a little used.  Anyway, a porter was rapidly on the scene and I was quickly back in my room.
Now is the scary bit.  The CT scan will show whether Mr. Tumour-face has shrunk or not.  If he has then things will continue on plan.  On friday will be the final RICE (thank the lord!).  If it has not shrunk, then it will show the little sh*t is immune to chemo, which will be bad bad news, as that is the main weapon they have.  Kind of like saying the enemy are immune the bullets and explosives, Mr President.  That gives the president a bad day.  So, I'm hoping hoping hoping the bast*rd has shrunk, otherwise it goes a bit Pete Tong.  A time for experimenting with mercury and infusions of sycamore root.  Eek!

Sunday, 21 September 2008

An Illegal Glimpse Over The Fence

We did it!  We mounted an escape bid.  Well, my wife did really.  She is very clever and very cunning (and may also be reading), did I also  mention beautiful and talented too?  :)

They (she and the kids) arrived after lunch today and we told reception we were going for a walk and could be some time.  
Backtracking a bit.  I woke up this morning and was feeling fine!  My arm was looking more like it belonged to me and less to Hellboy.  In fact it looked almost normal (almost, but still a bit squidgy).
I had managed to get through 24 hours without a temperature spike and at a time when I was most fearing having one (one of the lads who is a nurse here has just passed his blood taking test and is eager to let blood.  If my temperature spikes they want a blood sample from my line and my arm too and I didn't fancy him having a good old root around, scratching his head, looking like a dog who was sure it had buried its bone here but then again maybe over there... near the tree (dig), hmmm, howabout next to the fence (dig)).  No.  Didn't want that.
Jumping in time again.  My wife arrived looking lovely (you still reading dear?) and we shot off in the car.  The perfect crime.  The original plan was  to go for a walk round the park, but as the most walking I had done was to the toilet and (mostly) back, we decided to drop in on the in-laws, let the kids play in the garden whilst we had a sit in the sun (me very in the shade).  It was really nice.  I had forgotten how great sunshine was.  My artificially lit room, with only a glimpse through the bars on my windows (okay, slight exaggeration) to the beauty that is freedom.
Yesterday, the doctor had said that if my temperature stays in check and my blood counts keep climbing then they would probably be able to convince the ward uber-fuhrer to sign my release papers.  I was silently hopeful.
Anyway, after a lovely afternoon with my witty, intelligent wife (just checking you're still reading, dear) and the kids, it was time to return.  Rather than drop me off, they came back in and stayed for a bit (until Harry became painful with his constant demands for chocolate and yet another drink).
A little while later a couple of other friends, Gary and Kelly came to visit, which was great as I hadn't seen them for a while.  Sadly, whilst they were here, a sign went up on my door.  I had been marked.  I don't know if it was punishment for leaving the defensive perimeter, but it looks like it may damage my case for release tomorrow.  Basically, after my neutraphil count has jumped up and down over the last few days, today it is 0.5, which is officially neutrapenic and also meant that I should not have left the ward.  Oops, I didn't know.  Open the communications channels here people!  Anyway, all is okay.  I got given my "night time drink" (I opted for hot chocolate, as it is usually the one they can do the least damage to).  I studied said drink and still fail to understand how basic hot chocolate can be made to look and taste so bad.  An enigma scientists will no doubt be debating long after we are all gone.
Anyway, I'll let you know if I manage to will my neutraphils back up tonight and use my get out of hosipal card.  If not, then roll on next "night time drink", perhaps I'll give Horlicks another chance.

Friday, 19 September 2008

Waltzing on the Ambassador's Lawn

I'm still incarcerated in the Wexham Hospital of correction without being charged.

Remember Zebedee from the Magic Roundabout, many years ago?  He was like a spring with a head on and used to boing around everywhere?  Well, my temperature has decided to become just like him.  One minute nice and low, the next it flies up to the highest heights (accompanied by the sound of Kenny Rogers and that woman whose name I can't remember singing some song about something being lifted up where it belongs.  If that makes any sense to you, you're doing better than me).  Now, Mr. Holmes, where it gets even weirder, is that sometimes, when the temp is high I feel ragged and just want to sleep and maybe grunt occasionally and other times I feel footloose and fancy free, desiring nothing less than to waltz, Viennese style (is there such a thing?) across the ambassadors lawn (okay, slight exaggeration, I feel okay and am content sitting up, reading, typing on the laptop and not just wanting to doze.)
Not a lot happening otherwise.  I either lie here, wanting to go home or lie here wanting to go to sleep. 
Almost forgot.  I received a couple of units of blood in a transfusion (sorry if that loses me any Jehovah's witness readers, of which I am guessing there are a fairly vast number).  No one had warning me and when I saw the nurse approaching with a bag of blood I was strangely freaked out.  Apparently, my red blood count had been slowly dipping and they wanted to raise it up.  It seemed to help and made me reconsider my move to not join that marauding vampire gang back in '96.
Well, I think that was one of my most bizarre posts to date.  Not sure what is going on with my brain today, but thought I'd share its outbursts with you, gentle reader.

Until next time...

Saturday, 13 September 2008

The Hicks In Town and 24 Hr Chemo Marathon

So I'm sitting at the in-laws with a cheeky glass of red (purely medicinal of course!) and a bowl of freshly made pasta (the sauce was made from fresh tomatos home grown next door, deeeelicious) when the phone rings "Its an emergency we need you to get in now".  "Who is this" I asked, just in case it was MI5 and they had finally caught up with my dark past (that's another blog all together, or is it.....), sadly it was just the hospital.  Bed battle had commenced and I had to haul ass to Wexham Park Hospital immediatly to secure my bed for my week-end chemo session.  It was starting to get political!  So faster than a speeding bullet (or the type of bullet with fat ankles, swollen arm and baldy head hobbling like a Granddad) I headed off.

So when I got there, I re-aquinted myself with the room - manky towel hanging on the back of the door, check! Urine sample bottles lined-up ready for action - check!  Hospital entertainment system which for two pounds a day you can watch itv (as BBC 1 and 2 never work and most of its other functions are also bust - hey thats entertainment folks!!) - check!

Slept ok and woken up gently Friday morning 6am with a full blast of the room lighting coming on.  I understood, in those first few seconds, what it is like being an alien abductee.  Thankfully it was just someone wanting to take my observations (blood pressure, pulse, oxygen saturation and temperature).  They wandered off to their next hapless victim.  I got up and waddled to turn my light off.  I got back into bed, wiggled around a bit to find the nest like space I had made and got about 30 minutes sleep before repeat of previous.  
"Are you awake?", they asked.  I guess any answer is also taken that you are alive, as if you can sleep through the turning on of the LIGHTS you are either blind or dead.  They brought me some weet-a-bix, which is consumed quite happily and then next posse arrived to change my bed.  I stepped into the bathroom and did what people did there, then I returned and hung out for a while.
Around 10ish a porter  magically arrived and told me I was to be taken to the CT scan/XRAY department.  I couldn't see a wheelchair and was happy enough to hobble, as each day my feet got more normal my walking got better.  He stopped me in my tracks, most disappointed.  I had to go on my bed.  I shrugged and climbed onto bed and he took the brakes off and off we went.  You get given right of way a lot more when you're in a bed, it must be said.  I was then deposited at the intervention suite.  I was jovially greeted by one of the team, who announced to her colleague, "look who is back".  She popped out and said hello and it was really cool, I had forgot that appart from the sausage stuffing sensation, the team were a good laugh.  We had a bit of a chat and then I was lead in and sat on a table.  A canula needed attaching as they were going to sedate me.  I was asked, "do I fancy the 3 gin and tonics level or more?"
I always consided 3 gins to be a bit light weight, which was echoed by one of his colleages who suggested 5 would be better.  Anyway, in short order I'm feeling pretty squiffy and I know stuff is going on with my chest and neck but can't really feel anything so just lie there having a look round.   Every few minutes one of the team lean over, smile and say, "doing good".  I'd wonkilly smile back and continue with my random scanning.
The line was in and it wasn't too bad an experience.  It is a lot less annoying than the PIC and it seems a lot more sure.  Held in place with several sutures and not some plastic and glue arrangement.
Chemo on Friday was ok.  Felt fine.
Chemo on Saturday was a bit pants.  After the first two quick chemo drugs went in (1 hour infusion each), I felt totally tired out.  Now it was time to go shoulder to shoulder with the 24 hour chemo infusion.  Alongside it, is fed 12 litres of fluids.  As mentioned before, you need to keep your fluid out matching your fluid in.  I wasn't as I felt poo.  Diuretic time!  Whoosh, that did the trick.  Basically, you are lying there feeling crappy and have to keep getting up to pee in a pot.  Not my idea of a Saturday night (although, I have had some worse ones, but we're going back a number of years).
Sunday and my arms and legs were swollen.  I was weighed and was 4kg heavier than when I started.  Not an ideal sign.  So, diuretics were continued on sunday.  When they checked their records on monday I had passed the require 4.5 litres!  That was pee central my friends.  It requires dedication and resolve!
That about sums it up.  Oh no, the dreaded curse of the cough-cough-puke was back.  What happens is that if I move around to much or get up and go to the bathroom, it is as if a timing has been started.  I can feel it.  I know it has been posted in the mail and is en-route.  I cough a couple of times.  Okay, still got time.  Then again, but for longer.  Lets get moving people!  Then it is cough, cough, cough, gag noise.  Still time to get back in bed and lie very still.  Nope, too slow.  Cough-cough-puke!  Not fun.  The cough now seems to have eased somewhat but so far I have been sick each day.  The most ironic ones, were where I was given a new spiffy anti-sickness drug and within 2 minutes of it going in I was vomiting like a steam driven victorian puke engine with the steam set to full and a raging boiler to boot (sadly, you don't see many of these around today).  The plus side was that the drug made you feel high as a kite, which was tricky when I had visitors as I was more incoherent than usual (and my hands shook like I had parkinson's too)
Still, the 24 hour marathan is done and I am the proud own of a lovely(!) Hickman line.  Gawd bless it.

Wednesday, 10 September 2008

Knock, knock... Whose there?


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,


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.

Monday, 1 September 2008

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)