Friday, 12 December 2008

The Arrangements

As per my previous message, Richard's funeral is taking place next Wednesday, December 17th at 4pm.

The service is taking place at The Chilterns Cremetorium in Amersham. The website for the cremetorium is there is a location map on this page for anyone who needs directions.

After the service we will be moving onto Stoke Place for the celebration of Richard's life. The website for Stoke Place (not to be confused with Stoke Park which is in close proximity to Stoke Place) - It will be lovely to see everyone there after the service and all are welcome - as Rich would say the more the merrier.
Stoke Place is aproximately a 20 drive from the cremetorium, however a very easy route to follow. I will arrange for some instructions to be available for people at the cremetorium to ensure that no-one gets lost.

I would also like to once again express a massive thank-you to my family who have been a constant support at my side for the past week and all our friends who have been helping out with the arrangements/building work/paper work etc or just being the supportive ear at the end of the telephone or over a glass of wine. Without you all I would not be able to function at the moment so thank-you and I love you all so very much.


Tuesday, 9 December 2008

Some Initial Arrangements

Before I go into the details I would like to say a massive thank-you to everyone who have left messages, sent cards and for all the phone calls I have been receiving daily. It's times like now that friends and family are needed to lean on and I am blessed to have fantastic friends and an amazing family.

The initial arrangements for Richard's service have been made as follows:-

Wednesday 17th December, 4pm at The Chilterns Cremetorium

Anyone wishing to attend will be more than welcome and I will be arranging somewhere for the celebration of Richard's life afterwards - details will be advised on here once I have everything sorted.

I am requesting that we only have flowers from family and close friends. I hope this does not dissapoint people but I am going to arrange for a charity to be set-up in Richard's name (or Mr Baldy Lymphoma) and the funeral director will collect any donations people may wish to make. They will then transfer the monies to the charity once everything is set-up or we will donate to Cancer Research if this process takes longer than anticipated (I have only made initial research into how to set-up a charity so it may take some time, I'm not sure...... if anyone has any experience of this all advice is welcomed)


Friday, 5 December 2008

My Fantastic Husband........

For those of you that I have not been able to contact directly, or via friends I am sorry if this is where you hear the news. But sadly my fabulous husband lost the battle this morning and passed away in his sleep.

For all of you that have been following this blog and helping Richard with your fantastic words of support I would like to say how appreciative I am that you were all there behind him every step of this fight.

I will add another post on here once the arrangements have been made.

I wish that I was as witty and good with words as my boy to add a comment to make you all smile, all I can think is that in his non-believing state he is now having an argument with St Peter at the gates to let him in! Which no doubt he will win (probably bribing them to update their IT systems).

Sam x

Friday, 28 November 2008

It's Just A Bit Aggressive

Last morning I woke up with a husky voice, today none at all.  I could make gruff noises, whisper quite coherently but not talk, at least not in human.  I think this gives an idea how aggressive this thing is.  No small change every few days.  The radiotherapy doc noticed that the tumour has increased significantly from the scan he saw barely a week ago, so have moved the radiotherapy forward to this Monday.  I'm quite happy with that as I want it zapped.  He is worried about the amount of radiation its going to take to have a chance to clear the left lung (I think it is the left one).  There isn't any choice really.  Unless the main mass shrinks, it'll have burst out my chest aliens style before there'd be any chance of being ready for the stem cell procedure.  My current set of doctors/consultants at Wexham just seem to want to keep me down.  I had to go in today and give blood.  I was hoping to see my normal consultant, who the consultant/doctor dude from Hammersmith, who we saw yesterday, would have got in touch with and brought up to speed and set on the task of coordinating donors.  Anyway, he wasn't there and I got to see another doctor, she was okay until she started talking about all the different things that could go wrong before even getting to the stem cell transplant and that it was very low chance statistical that I'd get there.  Bloody marvellous.  I think I'm only going to listen to the Hammersmith doc.  So far this week I've spoken to three doctors.  Two from Wexham (first of whom depressed me so much I broke down in tears in their office), the Hammersmith doc who filled me again with hope yet tempered by the possibilities, risks and dangers and a final Wexham one who pissed me off again.  Just tell me the path is fraught with potential issues and dangers and leave it at that.  I don't want "very low chance statistically".  One sounds hard but worthwhile, the other sounds like "give up, you're wasting your time".  Argh!  They make it so hard to remain positive and focused.

Thursday, 27 November 2008

Hope Springs From Your Siblings Blood!

We had an appointment today with a doctor in Hammersmith hospital. I hassled my consultant that I'd like to see him, based on the fact that he suggest my last chemo when everyone else was out of ideas. My consultant contacted him with my details and I made an appointment for 10.30 today.
I was nervy all night in case my voice was going to disappear forever and slept elevated and anything else I could think of (it was when I was not elevated at all that it happened. So, clutching at straws, but you never know!). Strangely, I woke up feeling pretty good despite a 38.6 temperature.
Things were manic, just as they are most mornings in our house, what with kids to get ready and drop off at appropriate places. Time was ticking and it looked like we would be late and then Harry caught his foot and fell on the step as we were heading to the car (he was okay and more worried about the toy he dropped, I almost filled my pants when I saw him go). We dropped him off, then entrusted ourselves to the mighty SAT-NAV. According to the ETA, we would arrive bang on time for the appointment, so if parking was easy and we were right next to the clinic we'd be a couple of minutes late, so all good so far. We hit some traffic and my heart fell, but there wasn't much and my wifes majestic driving (eek!) got us ahead of schedule without triggering traffic cameras or getting traffic police on our tail, so all good. We got there and to reception bang on time, then were kept sat waiting for half an hour. Typical.
The doctor came out. He was smartly dressed, i.e. shirt and tie, but somehow managed to make it look a tad dishevelled, but hey, I was more interested in what he had to say and whether it was just the same of rubbish.
He went through my story so far and sympathised (I started to think he was going to say, nothing we can do). He then went through the various options normally used. He said because RCHOP, RICE and ESHAP chemo have failed, it is highly unlikely any other regimes would work, so chemo was not really a viable option. He said the radiotherapy was a good idea and that media stinal tumour usually respond very well (much more positive). He said the only other option was a stem cell transplant. This would involve high strength chemo, then adding back in stem cells to rebuild the now battered immune system. He then said that it was highly unlikely that would have an effect. I thought this was where he was going to offer to do it, but just for the sake of doing something and maybe, slim slim chance, might work a bit. I felt my heart start to dislodge it self and get ready to drop, but then there was a "but". I like "buts" in there situations. He then went on to say that in this situation, the option with the best, real chance of eradicating (I liked the use of this word) the tumour was to do stem cell transplant, but not use my cells. So, it go as before, but instead giving me back my immune system, I'd get someone elses (how romantic). The idea being that the new immune system sees the Lymphoma as foreign, something mine hasn't done, and lays into the bleeder. The chances of success are not amazingly high, I think 35% was guesstimated, but that's better than what was on offer (0%).
First step is to find a matching donor. The best and most compatible are siblings, with a 1 in 4 chance of matching (so sisters I'll be asking you soon if you fancy throwing any stem cells my way). If not then they will search for a match in the UK database and I am told it is usuaully easy to get one. The thing with a sibling donor is that there is less chance of nasty things happening at the beginning, which is slightly riskier with a non-sibling donor. So the risks for me are very real but not as bad as the 100% risk otherwise. So I'm excited. There is a new plan and it is progressing. The only danger is that the new little nodules will be left to there own devices, so the hope is they do not become troublesome!

Wednesday, 26 November 2008

Rock Bottom

Today was bad. In fact I think I hit rock bottom. Not a good place to be. Let me explain a little...
During the night / early morning, (I guess the opposite of twilight, but can't think of a name for it, if it has one. (I could call it norning or might, but that is just silly)) I woke up and it felt like my throat was clagged up with phlegm. I tried to talk but couldn't which freaked me a bit. I coughed and growled and tried to clear it but to no avail. My voice came back but very quiet and husky. My actual cough was not normal either, it sounded like a hobo giving his last splutter just before falling into the dumpster for the last time. It was weird, unpleasant and bloody frightening. I tried water and gargling but nothing would shift it and my normal voice wouldn't return, just this quiet husky alter ego. Next morning my ears were still not right and the right one was deciding whether to ring or sound like the sea. My temperature was high and I felt washed out and tired. It just seemed like it was lots of little things piling up, trying to kill me off in a kind of death of a thousand cuts or something equally dramatic. I was pretty low. My wife rang the Eden centre and they said for me to come in and they'll see what they can do for my throat. That made me a bit happier but my mood was down after so many days high temperature, feeling tired, worried about what's going to happen and the steroids I had recently had had made my legs as bad as they were yonks ago etc.
Sam had to go to London for work so she rang her mum, to see if she could drop me off and she could (my mother-in-law is great). They said they wanted me to come in quickly, so we rushed in and then I was just sat there waiting for about an hour or so. A bloke next to me kept trying to talk to me, but he kept using my ringing/sea ear so I couldn't hear him, just occasionally catch his lips moving. I tried to explain the situation but I don't think he could understand me with my quiet huskiness. That was just awkward. Anyway, finally the doc sees me. I'm expecting to get straight to business and get my throat checked and maybe my sinuses or something for my ears, but no, she just starts asking me a raft of depressing questions about my worse fears about dying. She asked me what I thought the throat problem was and I said it was either mucus/fluid or the lymphoma had done something. She said most likely the lymphoma had invaded part of the larynx or one of the nerves and that was why. I asked if during radiotherapy, if the tumour regressed, could I get my voice back? Answer: The radiotherapy may do nothing (nothing like building up a bit of positiveness). ME: But if it does? Answer: Maybe ME: Could I lose the ability to speak altogether? (scared now) Answer: Maybe ME: Would that be permanent, even if this thing was cured etc Answer: Maybe. Then she went on to highly emphasise how unlikely any type of cure was and there may not be any response from the radiotherapy (what has she got against hope? and radiotherapy for that matter). Anyway my pile of depression was being added to by the second. I so wished I hadn't come. At some point I broke down in tears. It may have been during some of the questioning or at some other point, just because I felt so low. I don't know if this was registered as a point on the "help come to terms with things" ledger (good work everyone, the patient cried, they can go to their graves easier now!).
Anyway, I finally escaped. I went back to ma-in-laws had some food and then had to rush home, as Sandra (who comments here regularly) was coming to visit. Got home as she was arriving, so good timing. Spent a nice afternoon and felt a lot more perked up by the end, which was cool.
What really perked me right back up was when my wife got home. She was all smiles and wonderful and just lifted my spirits. Thanks wifey!

Tuesday, 25 November 2008

Getting Ready For Rad

I had my first planning appointment for Radiotherapy. Sam drove me over and Harry came too. The appointment was at 7pm, which was unusual, but left plenty of time, or would have for normal people, we got there in the nick of time. We managed to get lost in some deserted corridors before finally a friendly cleaner told us we were on the wrong level. So off we went Harry in the lead, Sam setting quite a pace and me at the back, my feeble pin legs struggling to keep up. We got there and they were waiting for us. I took my top off and was positioned on the CT scanner and some lines and dots were drawn on me. Then I was fed in and out of the machine a couple of times. When they were happy, three of the dots were turned into tattoos. Sadly dot was the only tattoo going, there was no catalogue or anything. That was that. The idea is that they can use the scan for planning where the beams go, which is then all computer controlled. It felt good that something was happening.

Monday, 24 November 2008

One Step Beyond

Yesterday, I woke up with a temperature of 39.3, which is pretty high, but the hospital aren't too concerned now, as this close to chemo day it is pretty normal for me (as long as my infection markers are low and I'm not neutrapenic).  Anyway, it leaves you feeling washed out and crap, so I spent most of the day dozing.  My wife had loads of work to do and was beavering away and the kids were playing.  We were actually at the in-laws and they have a stair lift for great grandma, but she never uses it.  Because it is there, some of the stair banisters had to be removed so it could travel okay.  Well, I was lying there and Sam was tapping away on the keyboard when a loud bang was heard followed by Harry, our little boy, crying.  Sam moved like lightning, I told somewhat longer unfortunately.  Harry had fell off the stairs where some banister was missing and took quite a fall.  He was in shock and had hurt his little hand.  Sam had already got her sister to call an ambulance by the time I had got down.  The paramedics checked him over and he seemed pretty much unhurt, but he was in shock and not himself.  His mum went with him to hospital to be checked out and he livened up when he saw the toys to play with.  He had an xray and a thorough check by a nurse and a doctor and seemed fine.  By the time he got home he was his usual crazy self!

...And We're Back In The Room

Well, I'm back and focussed again.  After the shock of the previous news, especially when my consultant had said there were plenty of back up plans, things are settling.  I will not lose to this thing.  It is not an option.  

Feeling a bit crappy today and yesterday.  Had a couple of monster temperatures which drifted down throughout the day.  Trouble is it leaves you feeling really weak and rubbish.  I can't hear properly out of either of my ears.  The right one is sworse and just sounds like the sea, whereas the left one makes my voice sound likes its emanating from the middle of my head.  Don't know if it is the cold I had taking longer to clear than I thought or the stupid lymphoma trying to add to my list of annoyances.  It's a real pain in the bum.  Anyone who speaks to me, gets me saying what, pardon, eh several times and anyone I talk to, I boom at.  I can make my ears click by holding my nose and blowing but it hasn't yet popped back to normal (oh, please let it do that soon).

Big thanks and hugs out to everyone who has been sending me information and messages of support.  Some people have asked for the full details of what I have, well, it is called:

Non-Hodgkins Lymphoma - Large B Cell Defuse primary mediastinal (THYMUS)

Kind of rolls of the tongue really!

The news so far:  Tomorrow I will be going to Reading hospital to be measured up for some radiotheraphy which hopefully will shrink the sucked down.  I've been told it could shrink from 0 to 80%, but at the least it should be held.  Then there is sthe possibility of seeing another consultant for some RF ablation to kill off the new nasties that have moved into my organs without invite or contract.  Hopefully that will reset the clock back a bit.

Thursday, 20 November 2008

End Of The Line Soldier Boy

So I had the scan.  No problems.  There was no queue and it went like clockwork.  The next day I had an appointment to go through the results.

My wife and I turned up at the proscribed time, cus that's the sort of people we are (well, we tend to be late, actually).  When we got there our doctor was running 3/4 of an hour late.  Great, more waiting.
When we were finally ushered in, I was asked how I  was and have been.  Then he gave us a letter which was the reply from another possible hospital that might have been able to help.  It basically said, yeah, what you're doing seems okay, bye.  So, that was helpful.  Then, when there was no more small talk to have, my consultant said it was once again bad bad news.  I had gone in expecting good news (talked myself into it), but was ready for bad news, but not quite what I got.  He said that not only had the tumour carried on growing, it had also spread.  That was what I was definitely not wanting to hear.  It got worse.  Rather than just spread to a few lymph nodes in my neck or something, no, it had to go for places that I didn't want messing up.  It has spread to my liver, kidneys and other lung.  Whoopee-do.  I am officially riddled with the crap.
Then I was told there was nothing else they could do and that I had a few months.  We asked about other centres in the UK and were told there were no other drugs to try and no clinical trials happening that were relevant or that I could get on, etc.  Basically, your stuffed mate.  The hint was made to not try and fight it any more but to enjoy the time left before bits start breaking and falling off.  I can't do that.  Now, for half of this I was sat silently in shock, whereas previously I could still keep my chin up and add in the odd wise crack.  It was my wife who interrogated them for some threads to cling to.  We asked about the option of trials in Europe or the states and just got blank expressions and told we could search the internet, which I thought was a bit rubbish.  I've seen article written in 1994 about multi drug resistance and theories and possible drugs etc, surely by 2008 something must have come of them.  
Anyway, we left, sat in the car in silence for a while, hugged and cried, in no particular order.  I felt sad, angry, bitter, helpless and a myriad of other emotions too numerous to list.  We went and got some lunch.  Talked and hugged, etc some more.  I decided I didn't want to mope around in the evening and so we got some good friends and went out to one of my favourite restaurants (mexican food, I love it).  I got a bit drunk, as did everyone else.
Now, its back to searching for something that may help.  I'm not ready to accept the end of the line, even if that's where I might be.  A bit of selective blindness/deafness can be useful.

Monday, 17 November 2008

Scan Today....Scan Tomorrow....

Well, I was in the hospital on Friday for a blood test and line redressing.  I also wanted to find out the details for my scan which was meant to be scheduled for today.  Did the blood stuff and that but when they checked their system for my scan appointment, there was nowt, nothing, zilch.

I saw my consultant fill in the request, the nurses there were totally sure the form had been sent through.  So, they rang.
Nurse:  Hi, I'm trying to find out what happened to a scan request for Richard Wildman
Faceless person on other end of phone: Did you send the form through?
Nurse: Yes, definitely
FPOOEOP: Hmmm, are you sure?  If we had the form then he'd be on the system.
Nurse: Which is the reason I'm calling
FPOOEOP: Oh.  We probably lost it then.  Can I help with anything else?
Nurse: Can you add him into the system, for the requested Monday scan?
FPOOEOP: Sure, if you'll just submit a request form through.  At this late date, I can't guarantee we'll have a slot free on Monday

So, I now have a scan lined up for tomorrow.  Strangely, I'm not too nervous about, despite the fact that if it shows the tumour has not shrunk then they are out of ideas, which is not a good place to be.  Ho hum, we'll see.  I was also told that I won't get any results till Wednesday.  That may be a scanxious waiting time though.

Monday, 10 November 2008

Panic and Raffles

I've not written a post for a while again, I know, I'm a very bad person.  I'm finding it hard to get motivated to do things, pretty much anything, including getting out of bed.  I just feel tired, tired and then a bit tired.  It hasn't helped that I've had a cold on the go too, which has left me with that annoying ear thing, where whenever you speak it sounds really loud in your head.  I keep saying, "what?" or "pardon?" to anything said to me, as I can't hear a sausage!

I've also been worrying like some custom built worrying machine.  Has the tumour shrunk at all?  It's had a cycle of the new chemo and I'm in cycle 2, with a scan next Monday.  I keep thinking I'm noticing small symptoms that I had before, which I then use to conclude that the treatment has failed and then panic that I'm out of proper options.  Not a good place to be.  Luckily, I don't stay there too long, but the slightest thing seems to get my mind back there.  I know the chances aren't that high that it will work, but come on, I've never won hardly anything on the lottery and whenever there are raffles, I never get a sniff in.  When I was little I used to go with my ma and pa to the British Legion club, where they would go dancing and have a few drinks and I'd sit and be well behaved drinking coke.  There was always a raffle.  I think in all the years we went, we won twice!  Although, there was a family who seemed to win every other week.  Hmmm, sounds like a fix.  Legion raffle had some pretty good prizes, you know!  Anyway, I reckon I should have earned a bundle of "luck karma" and should now be able to spend it!  I just need to know who manages such things and how to get in touch with them.

Tuesday, 4 November 2008

How To Look Stupid In One Easy Lesson

A few of us went to see the new James Bond film, Quantum of Solace, on Sunday evening.  I did my injection for the day, whoo, got to love the injections and I was ready to go.

We parked in the multi storey car part opposite the cinema.  The car park was busy so we were parked near the top.  I then got to experience the joy of walking down the steps with my feeble legs.  I was out of breath by the time we got to the bottom.  I've still got a lot of muscle building up to do!
Anyway, everyone had crossed the road and I was hobbling behind.  By the time I was ready to start crossing, I saw two cars zooming round the corner and didn't think I'd make it in time, what with my top turbo boosted speed being around the speed of a heavily sedated snail.  I decided to walk along to the traffic lights and cross there.  Now my brain said to my legs that turning would be a cool thing to do and one of them agreed, sadly the other leg was busy or just not listening and stayed where it was.  So, with one leg not quite turning properly and the other one discovering a nice uneven bit of curb, the only outcome, according to the laws of physics, was for me to drop to the floor like a sack of sh*t.  This I duly did.  Everything DIDN'T go in slow motion, as seems to be the norm when falling or similar, but not this time.  One minute up, the next lying on the floor in a heap, shocked and not quite sure what was going on.  My feeble arms had reflexively taken the brunt of the fall, but only just.  If they were any more feeble I would have been trying to do a bit of concrete mining with my face!  The sound of me hitting the deck, reported back to me as "a loud thud", got some of the others looking back and I was helped up and dragged out of the road before the next cars came! (good move in my book).  I had dirty hands and scuffed knees, just like my little son often does.  No really injuries, which is good as with the anti-coag injections it would be a swine to stop any bleeding.  When I got home I found some stonking bruises but the worst bit was that I fell over pretty much in front of the cinema, much to the entertainment of the crowd loitering outside.  Still it's good to entertain and make people smile (laughing bastards!  I'll have my revenge on each and every one of the tittering gits!  Erm, okay, calm again now)

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!

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)

Wednesday, 20 August 2008

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.

Tuesday, 19 August 2008

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.

Thursday, 14 August 2008

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.