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.

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.

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.

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.

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.

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)