Thursday, 30 October 2008

My Birthday!

Ok, so this post is a little late as my birthday was on Tuesday.
I've been having little birthday type events happening since Sunday, where my wife, sister and I were going to lunch and lovely wifey had arranged for loads of family and friends to be there.  It was cool.  I ran out of steam about 5ish, went home had a quick sleep and by the time I had woke up, my wife was home with a few of the others, which was cool.
On Monday I said I wanted to go to Thorpe park (the roller coaster place).  A bit of a stupid plan really, but I was feeling ok and wanted to go on a roller coaster.  Doctor may not have agreed, but yaa-boo-sucks to him!.  We got there in the early afternoon.  It was bloody cold and amazingly busy.  We joined a queue (a massive one) determined to get on a ride.  What I didn't realise was how hard on me standing would be.  My skinny legs were not happy and I had to find things to lean on.  Just when it seemed like I'd have to give up, the glorious end was in sight.  The ride, Nemesis Inferno, was cool.  I enjoyed it, but the queuing had knackered me.
We went to sit down and have a coffee, which was good.  Stayed there a bit longer, had a drink elsewhere, some of the others did some other rides but I was content to sit and chat.
Next day was my actual birthday but I felt under the weather and had a temperature, so didn't end up getting up until afternoon.  Shame really, as there were quite a few birthday options available.  In the evening, my wife cooked mexican food (I love mexican food) and some friends came round for drinks.
Yesterday, my temperature was behaving and we had some friends round for dinner (wifey cooking again and very well).  
It's soppy, I know, but I love my wife.  She organised lots of birthday stuff for me, so if one day I wasn't feeling good there would be something the next.  She is one cool lady.
This morning my temperature started off well high (and if I was well behaved I would have rung the hospital - they would have had me come in and that's where I'd be for the next 4 days).  I gave it a couple of hours and it had started to come down nicely.  Stupid weird temperature.  I didn't feel hot, didn't look like I had a high temperature.  Wierd!

Sunday, 26 October 2008


So, we're sat at home yesterday.  I'm in bed, just getting myself ready to shift my ass and go downstairs.  My wife wasn't feeling very well and was sat on the bed with my sister.  

The door bell rang and my wife, Sam, went down to answer it.  We could hear male voice but not what he was saying.  We didn't think anything of it.  A few moments later Sam came up the stairs really upset.  After giving her a moment, she said that it was the RSPCA again!  Apparently the mad old bitches had been making further complaints about out cats being neglected.  They said that the cats are left outside without anyway of getting in the house and with the weather getting colder they were in danger.  Hmmm, would be true, apart from the cat flap we had installed in the back door which they are happily using.  Also, they complained that Sam went away for whole days and obviously they were going hungry.  Yes, Sam does have to go away for whole days, due to work meetings in Manchester, Birmingham and London etc, but she feeds them in the morning making sure they have got plenty.  If Sam is away that means her mum is going to pick up the kids.  Her mum has two cats of her own, so she makes sure ours are well looked after.  She will drop in after picking the kids up or dropping them off and load up the feeding bowls. 
If you look at our cats, you can see they are well fed (maybe too well fed, Pete is a monster cat!).
So, the RSPCA man returned in a few minutes.  Was shown the cats and could see they were fine.  Showed him the cat flap and he was very apologetic and embarrassed but said if they got a call they had to respond to it.  He said he would make sure we weren't bothered again by them.
My sister was totally riled.  It was great!  She shot round to mad cat woman across the street and spent a good ten minutes banging on the door but she wouldn't answer.  She came back and tried next door but no answer.  She asked us if the harasser from next door was likely to be in.  We said yes, so she went back and just held down the door bell, so it was ringing constantly and hammered on the door with the other hand.
Eventually when she realised this wasn't going to stop, the old bag came out.  My sister Chris said that this was not due to us, but was that she is pissed off that she is harassing us.  Old bag tried to interrupt and was cut down.  The conversation went a little something like this:
SIS:  My brother, who as you know is not well right now and my sister-in-law are going through some tough times.  I want you to stop harassing and upsetting them
BAG: But the cats...
SIS:  Cats?  Maybe you should start thinking a bit more about people!
BAG: Sam goes away for the whole day sometimes and the cats are neglected...
SIS:  So, you're spying on her and coming up with a story without the facts?  What sort of person are you?
BAG: You don't have to be like that
SIS: Yes, I do!  With people like you.  I hope this never happens again, otherwise I'll be back and you'll have a problem with me!  And tell your busy-body friend across the road, the same applies to her!

She then came back.  I loved it!  Not sure if it will do any good or if we'll have the police round next, questioning us for verbal assault or some such rubbish.  I do know we are not in the neighbourhood busy-bodies good books though!

New Chemo Regime and Meeting Radman

The mood and message seems to change each time I see my consultant.  Once again the mood is positive and the message is that the stem cell transplant option has not gone away.  If this chemo regime can get a reduction in the nasty stink beast (my affectionate name for it) then they will jump into high strength chemo, utilising these drugs that have worked.  Sounds like a plan.  Also, this chemo is given as an outpatient, only takes about an hour to do and also is meant to be easier to tolerate.  So far, sounds a winner! 

So, I went in with my entourage.  My wife was with me and my sister from Ibiza had come over too.  So it was pretty cool.  
On arrival, we were told another consultant had come over from Reading and wanted to have a chat.  Hey, the more people looking at my case (sounds like a detective story, "yeah chief, I'm all over the case") the better in my book.  We went in to see him and after a bit of wrangling around with chairs and stealing an extra one, he asked for some history.  I reeled off the story from diagnosis to present day.  He explained that he was a clinical oncologist, which meant that he liked to blast people with radiation, whilst giggling like a mad scientist (okay, that last bit may be my embellishment).  So he wanted to talk to me about how a brief bit of radiotherapy could be used after this chemo regime.  Basically, if the chemo worked, then it could help shrink the tumour some more and if it didn't work then it could give it a push back, whilst a new plan is being put together.  He answered all our questions, was a pretty nice seeming guy and we came out happy.
I got given the chemo and left to go home.  Felt a bit sick going to the car but that calmed down once I was sat down.  I got home though and felt rubbish and went for a lie down.  When the ladies came to check on me my temperature was spiking well high.  I should have rung the hospital but they would have brought me into A&E and filled me with anti-biotics and not let me out for several days, so instead we gave a it an hour and checked if it changed.  It dropped gradually back to acceptable levels and I was a pleased chicken.
I'm writing this from bed right now.  My sister has nipped to church and my wife and son have nipped into town and I have a bit of a temperature going on again.  Probably come down again by now though.  Stupid freaky temperature!
Just so you know, the new drugs are: Gemcitibine and another whose name I didn't remember but it is a synthetic version of vincristine.  I'll mention it when I find out.

Monday, 20 October 2008

Scan Day - When Your World Can Change

I had the heavily awaited scan today.  I got to the place, was given a big old nasty drink to drink and sat waiting a bit.  The waiting room was pretty full and they were an amusing chatty bunch (total surprise, but a nice one!).  So the wait was pretty short.  They all got called and I was left with a very fat man, a man in a wheelchair and a couple of middle years, where the wife was frequently belching and issuing orders to her husband in her Scottish drawl.  Amused me.

I was called in, had to put on one of the hospital gowns, you know, the ones where your arse hangs out the back.  Lovely.
They put me on the scanner and zing, zong, it's job done.  The table you are on gets slid inside and pull out again a couple of times.  A voice tells you when to breathe and when to hold your breath and it takes about 5 minutes.
My lift arrives (good old ma-in-law) and we set off and I get a call from the nurse who manages my notes etc and my alarm bells ring.  She says can I come back in for my results at 3.30, rather than just have them on the phone as they shouldn't really do that.  Now, the only other time I have been called in for results was when it was bad news.  I pushed it out of my mind, got home, had a brief snooze and got dropped back.  As I sounded a bit worried my wife joined me (we have been very confident that this scan would be good).
No sooner had I sat down than my consultant said, "I'm afraid it's bad news.  Very bad".
Whoopee!  I thought.  I bet the bloody tumour has not responded and is the same as before.
"I'm sorry to say that the tumour has grown considerably through this last chemo cycle".  
This really shook me.  I was so certain it was shrinking but no, the bastard was getting bigger, much bigger.  It had grown in a new direction and wasn't pressing on anything and so not causing symptoms.  But there was more.  He pointed on the scan a teeny tiny new node, inside my lung.  The cheeky bastard!
So my world changed.  Not more high strength chemo lined up.  The plan to try and cure me is canned and the plan now is to try and manage it (and keep me alive!).  He said there are still some options left but they are not far from having to say, "there's nothing more we can do".  I guess at that point it becomes terminal.  I hate that word.  
Anyway, next treatment will be Friday as an outpatient using some new drugs I haven't encountered before, in the hope of getting a shrinking response.  
Quite a lot of news and even though I am calm, I know there is an emotion storm on the way.
The questions are building up, e.g. will I get to see my kids grow up.  Hmmm, not the best news, but we'll see what we can do with it.  Got to keep fighting this thing, despite it being a good player.

It be harvest festival time!

Last week on Monday evening, I got a call from Hammersmith hospital saying they had a slot free on the magical mechanical stem cell machine and could I get there for 9.00am Tuesday.  I checked with Ma-in-law who would be driving me and she said yes, but we'd have to leave at 7 (2 hours, not bad for a  14 mile journey.  We love you traffic).

So, I get there.  Unfortunately dropped off at the wrong end of the hospital but my hobbling is improving and I hobbled it ok.  I meet the docs and nurses, all seem a nice bunch and then see the machine.  It was definitely circa 1985, lots of spinny bits and relays.  Very retro!
They entered my details and it recommended me being attached for 5 hours!  The nurse operating it looked a bit bemused and said it didn't normally ask for that long (I just knew it was part of the conspiracy to make everything take ages in hospitals).  So, they hooked me up from my Hickman line to the machines output, but needed to put a canula in on my arm for the machine to take blood.  Okay, fair enough.  At least until I saw the needle they were going to use.  The nurse walked up holding what looked like a knitting needles older and bigger brother.  I looked at it and wondered what was he going to do with then, when STAB!  It was in me.  I yelped like a guide dog that has misjudged the traffic and just bounced off a bus.  It was huge but thankfully it had found a good vein.
So, 5 slow hours pass, each of which the nurse had to remain with me, checking me and the machine.  I leave, with the warning that if the stem cells collected are not enough or of a high enough standard I may have to come back the next day.  I started to deflate, but crossed my fingers instead and left.  
I got home and began to slip, slide and hobble out the car when my phone rang.  It was the doc from the hospital.  He said all was good, in fact I had produced 4 times more than needed.  Hurrah!  Go stem cells!

The 7 day (head)ache, opposed to the 7 year itch

Well, it's been a good few days since I last posted, but I have a fair excuse (well, I think it's fair anyways).  I have basically been feeling like utter crap!  Since the Saturday before last Saturday, I was presented by the health fairy with a constant banging headache, that wouldn't shift with pain killers.  

My sister and bro-in-law from Nottingham were coming to visit.  I was just having a rest to be on full strength when they arrived and the plumber turned up (he is plumbing our extension).  He announced after being here about 10 minutes that he needed to pull up the lounge floor.  Great, thanks for the warning, we now had no downstairs rooms we could use (other than our teeny tiny kitchen).  My sis arrived but they just came upstairs and alternately entertained the kids or sat and chatted to me.
The plumber then announced out the blue that we needed to get a new radiator.  I was in no condition to, so my wife Sam had to take on the suddenly urgent task!  She wasn't too pleased!
Despite feeling like 20 builders were trying to drill their way out my head, I managed to go to lunch with them.  It was lovely to see them and be with them but my head banging constantly and feeling super tired was getting to me.  Sam finally joined us and had some food and then I had to end the party and return home for a lie down (wuss bag!).
The headache continued with no respite until today (Monday).  It was improving over the last two days and faded away this morning.  Despite having got through 8 outpatient and 3 inpatient chemos, this headache came closed to breaking me.  Anyway, it's gone now, so hurrah!

Friday, 10 October 2008

Me and My Chicken Legs!

I'm out and discharged from hospital.  I feel really tired and lethargic and can hardly walk due to my wasted leg muscles.  I walk like a badly coordinated 96 year old.  That's not the worst bit, getting up to standing is a swine.  Don't even ask about the worry I had when I sat on the toilet (yes, I thought I was stuck and was going to need help to get up.  I just managed it though.  Not fun).  As soon as I was released I tried to start getting some walking done and to go up the stairs a few times (that's a killer).  Next morning the few scrawny muscles I did have were throbbing and I could hardly move my legs at all.  Standing wasn't only difficult it was bloody painful too.  So, as good as high dose steroids are for somethings, they are bastards when it comes to scoffing muscle tissue.  I now officially have chicken legs (or chicken bone legs to be more precise!)

On the plus side, I now have a stem cell harvest date and a scan date.  Fingers are crossed that the last chemo session (which I found really gruelling, more in another post) seemed to have worked (please, please).  Anyway, I now have to give myself 3 daily injections (yum, yum) in my soft white belly.  1 is called Fragmin and is an anti-coagulant, the other 2 are GCSF which is the drug that makes my poor tortured bone marrow release stem cells.  I have 2 of those because they don't do a single on in a big enough size.  Doh!  

Tuesday, 7 October 2008

Should I Stay Or Should I Go Now...?

Grrr!  I'm not patient any more (although I am a patient, boom boom, puntastico!).  The doc has been to see me and checked everything off the list:  no puking, no fever, temperature under 38 for 24 hours, looking well, not dizzy, weight ok, etc, so-on-and-so-forth.  

The question was then raised again, "so, can I go then?"
She froze a moment.  Did a quick computation.  Not sure what it was.  
She said, "Possibly".
How bloody useful is that?  Still, if Hitler thought that way the 20th century may have been different:
"Fuhrer, shall we invade Poland?"
"Hmmm, possibly"
Many lives may have been saved and the Charlie Chaplin look-a-like may have lived a few more years preaching his own brand of hate filled rubbish.
Anyway, short dictators aside, she then said that she would need to run it by the consultant and get the go/no go decision.  Just to make sure this didn't go on all day, I ask when she could do that and let me know and she said in 30 minutes.  That was 2 hours ago.  I may restart digging my tunnel (code name Charlie, after tunnel Alfie was discovered by guards and after tunnel Blinky collapsed).
The wait goes on.  The trouble is, it could put my temperature up and result in me not being allowed to go!

Monday, 6 October 2008

The Incredible Puking Man

So they told me when my last bit of treatment was done, I'd pretty much be able to go home.  I was an excited kitten.  Sleeping in ones own bed and all that.  Well, the last slow bag of fluid crawled into me and I had a good nights sleep, all ready to be up and out the next morning but, shock horror, I had changed...

Into the incredible puking man!  I was woken at 6 (as normal), loaded with anti-sickness drugs and then proceeded to spend the morning feeling nauseous and doing some power puking.  It was horrible and very disappointing.  Apparently, Cisplatin (the drug I had been receiving for the last four days) is a mighty puke maker but the effects could have been dampened by the steroids, which were now done. 
So, that was the morning, then in the afternoon to seal the deal my temperature went climbing to 39 and I felt like crud.  My head ached and my body felt heavy and weak, so no going home.

Today, I woke up, feeling a bit weird.  Temperature was 38.4, so they won't let me go today, but I've been improving throughout the day and not been sick, so with luck, I may get out tomorrow.  I must be feeling ok, as I've got the lappy on and am typing this.  
Anyway, just a quick post.

Oh yeah, if there is anyone with a blog out there in the blog-o-sphere who wishes to swap links with me, let me know.

Saturday, 4 October 2008

I'm greedy and I know it, but I still want more...

Many thanks to all the well wishers who have sent me messages.  I love all the comments I get, unless they are hideous death threats due to my writings about the prophet (not done any, so should be okay there, unless the Johovas Witnesses read my previous post and get militant).  

Now, just being greedy and believing that laughter is the best medicine, if you can plug your best joke at the end of a well wishing comment, then I'd be well happy.  If you can uplift me and make me laugh, then that's double bonus points!

On the subject of jokes, are you like me and find that you can only hold a maximum of 2 jokes in your head at once?  That's the way it seems to work with me and it is always the last two I've been told.  So the real bummer is when you had a great classic belly busting wheeze-matic joke all lined up and then someone comes along and tells a stinker and boom, it's lost in the joke aether.  Listen to what I'm stuck with as my number one joke right now.  It's not good and I don't know where I heard it.  Sorry if I knock anyone elses number one joke out their brain with this one, but I've got to share it and how bad it is:
Q:  What is white, green and then white?
A:  A frog sandwich

Come on, I mean, it shouldn't even count!  I should never have lost some complex, yet amazingly funny joke that reduced all who heard it to tears of mirth, for that, so help please!

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!