Monday, 28 June 2010

hair today, gone tomorrow

Ah well.

It finally happened.

Over the last 48 hrs my hair started shedding like a moulting cat. I could just lightly grab a wad, give it a slight tug and out it all came. Running my fingers through it and giving it a shake, would leave leave my hands as covered in the stuff.

The new chemo (r-chop) contains a lot more of the 'red drug', which is the one that makes you lose your hair, apparently. Still, how odd it should happen nearly three weeks since the treatment.

The issue has been resolved by a quick trip to my friendly local salon where they kinda gave me a free buzz cut all over.

I now look like the traditional English Football Yob, which on a day after our pitiful football team were pathetically kicked out of the World Cup, fills me with a kind of duty to go and throw some plastic chairs at some foreigners.

'Av it.




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Friday, 25 June 2010

and then there are good days

I am elated.

The last two days my health has shot skyward. I feel almost perfectly normally. The stomach still grumbles but I all my 'guts' have deflated. I can yawn fully without pain, I can cough, I can inflate my lungs fully (which I do 'just for fun'), I can eat very hot curry from an indian restaurant two days on the spin, I can poo properly, I can walk faster, I can almost stand up straight, I can sleep all night, I can feel happy that's Friday ... I feel fucking great.

I want to drive at 110mph listening to Jimmy Eat World, I want to spend a million pound, I want to dive with manta rays, I want to run to run a marathon.

And these, I guess, are the good days.

Next chemotherapy treatment in 6 days.

Sent from my BlackBerry® wireless device

Wednesday, 23 June 2010

a poem

At home,
Curry on way.
England win,
Happy day.

release papers

I was moved last night to a room with a toilet and shower. Civilisation.

This morning I have my release papers. They are concerned my temperature still keeps going up to near 38 and I have to take paracetamol but the agreement is I can manage this out of hospital.

I'm sitting on the bed, waiting for my prescriptions, which will take a few hours and I'm under instructions to report back Friday.

My stomach is still a bit sore and yadayadayada but fuck it all, I should be out of this cell in a few hours, the sun is out, I can eat some nice food, England are gonna smash home a hatful of goals and I will be able to have at least at few days of not being injected, poked, prodded and examined.

Freedom.


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Tuesday, 22 June 2010

one more sleep?

I saw a doctor this morning. She did the tapping thing on the back that they do so well and said ...

"Well, you do have a lot of fluid in there"

I have no idea what/how this fluid is all about. She explained that it could have been there since the operation. In itself, it will dissipate but it can settle in small pools where bacteria can grow (hence infection). A normal healthy body will sort that all out.

The good news for me is that they really don't want the drain this fluid. *IF* my temperature stays down and my white blood cell count rises (which it should be now I've had 4 days of booster injections) then my body should sort this out.

My temperature this morning was 36.5. That's good, although last night it was 37.7 - which is getting close to the  38 'too much' zone.

My blood has gone away for more tests this morning ... hoping for a high white cell count and a day of low temperature and I 'should' be allowed out tomorrow afternoon.

But to be honest, I've given up hoping about my release date now. It's always pushed back by a day or half a day. The only time I'll realise I'm out is when I'm sucking down some air that isn't flavoured with NHS food, commode odour and death.

dignity fail

*WARNING: this blog contains information about my bowel movements. You don't have to read it. I'll create a separate blog with a health update*

From Friday pm to Monday pm, I was in a pristine room, with a pristine en-suite.

On Monday pm, I was moved to a small, square, old room with no toilet or shower.

I'm not allowed outside my room. The communal male toilet is a long away and I would have to pass many sick people.

So, I have a commode. A commode is a chair with a liftable seat. Under the seat is a cardboard disposal six inch deep bowl.

This is your toilet. 

On Monday eve, I was given two suppositories and some magic liquid to help my shift the now painful situation I was in.

After a few hours, all hell started breaking loose. With the emphasis on 'loose'.

So, you do what you have to do. Into a cardboard tray suspended under a hole in a chair. And then you press a button to call a nurse. Sometime later, a man will come and make small talk. He will lift the lid and HE WILL LOOK AT IT and then take it away. 'Sometime later' has ensured your small, warm room is now filled with the kind of smell you don't normally get this side of the equator.

And of course, because you're backed-up with a weeks worth of supply, this isn't going to be a one off event.

And it's not.

Dignity is a thing that you don't realise you have until they take it away. 

The 'good news' is that there is better room with a toilet / shower that 'should' become available later.

Cross everything for me.

I'm mostly keeping my legs crossed.





Monday, 21 June 2010

downsizing

Well, here I am.

I've just been transferred from the Hilton Suite to a down-town Kabul Quality Inn Budget Room. Hideous d├ęcor, no toilet and hot. On the plus side I have a lovely view of the air conditioning units on the roofs of Watford General.

There are the 'pay £4 a day' TV's in these side-rooms, but I'll stick to the internet for which I have a great reception. Which is about all I care about to be honest.

I'm in some pain now with the throbbing back issue. There's trouble ahead, I know it.

The doctors are umming and arring about when/if to do my fluid drain. My temperature is up from 36 to 37.2.

I've not expecting to get until Wednesday, although it's been pushed back every day so far. Quite possibly Thursday. Who knows. I'm almost beyond caring. Perhaps I'll become institutionalised. I might start shouting every 7 seconds for the hell of it.

Fuck it, why not .... URRRRRRRRRRGH!  URGGGGGGGGGGHHH!

God, it feels quite good ...

URRRRGGGGGGGGH!

better but ...

Hello. I'm still here. In the room.

Last night I had a bag of blood dripped into me and had a far better nights sleep, which resulted in me waking in a better mood.

I finally found out my blood type. Oddly, it's A Positive. I would have put money on B Negative.

Today's problem is the return of the lack of back door action. My last bowel movement was Friday am. Not good. Doctors have been to explain why this is and are going to prescribe something. My lower back is spasming which is obviously related. As I've said many times before, there's always something.

Then something a bit weird happened.

A knock on the door and a porter with a chair, who wheeled me off to ultrasound.

A few moments later, there was an 'X' in white tape stuck to my back.

"What's that for?", they said.
"So they know where to put the needle to drain the fluid"
"What fluid. I know nothing about this"
"Oh"

Back to the room.

I got a visit from two familiar faces from my chemo Unit - two of my key workers and a new, very friendly doctor.

He told me there was some fluid on one of my lungs and below it but if they can keep my infection/temperature down then they won't have to drain. Further X-rays will reveal more later on. I was also told that they want 48 hrs clear of temperature before I'm released. The means I'm not out until Wednesday.

As I write, I am having more blood given. Another couple of hours of this and then .. as I've just been told ... I'm being transferred to a ward, I'm assuming into a side room - it must be.

Obviously, knowing my bloody luck, this room will be a lead-lined concrete side-room in the middle of a ward, in the middle of a building blocking all mobile phone/3G reception, which will be the end of my internet, TV and radio.

As I've said many times before, God clearly hates me.

Say a prayer for me. I will go fucking insane with no connection again.

Sunday, 20 June 2010

Hello World!

We tried a portable TV.

No signal.

We tried a DAB radio.

No signal.

We bought a AM/MW/FM portable tuning radio.

No signal.

I begged a good friend to bring me my laptop from my house.

I've sat my Blackberry near the window, receiving 3G. Somehow.

I have tethered my laptop to the Blackberry wirelessly via Bluetooth.

I am streaming live radio and able to browse the web from my bed.

You have no idea how happy this has made me. I am able to listen to the World Cup Live, browse the web, listen to the news, chat on my forums.

I can't survive without a net connection. This room has suddenly gone from isolation hell to HELLO WORLD!

*relief*

Now, back to the pain ...

Going down ...

Balls.

My blood counts are even lower. Both red and white. I'm now neuroplegic neutrophenic and anemic. Both of which are hard to spell.

Blood transfusion coming up and the chances of me getting out tomorrow are about the same as an England / France World Cup Final.

Oh yes, some people have emailed/txt'ed and are confused about the infection and where it comes from. The bottom line is, we'll never know. It could have come from food, air-bourne, anything ... The point is, it would have been something that you wouldn't have noticed if it 'got it', as your immune system would have been able to deal with it.

The sore stomach could be infection, but it could also be post-op stress or the chemo. There's no tests. The infection and the soreness may be unrelated.

Sadly, this could be my world for a while. Chemo will probably always make me neuroplegic and that means I'm wide open to any infection - no spleen is making this situation more of a headache. So, this may not be a one-off.

I hope that helps clear it up. Its hard to get all this across and I'm learning as I go along.

I wish I had more cheery news .. But I'll tell you that I'm feeling 'OK' and am still smiling. If it makes you feel better.

I am currently waiting for someone to drop-off an old-skool radio .. The manual tuning ones .. Because the digital one cannot pick up anything. I have no TV here and if I don't hear some bleeding outside real-world voices and football commentary soon, I may go insane.

I'm glad I'm keeping this blog. I'd never remember all this shit I'm going through .. one day when I'm older I'll look back, read it all and say ...

"I was there."

"And it sucked."
Sent from my BlackBerry® wireless device

Saturday, 19 June 2010

Silence is golden

... (From below) ...

I have been moved rooms. Its much nicer. I am near a window and can hear birds.

If you're thinking I'm a bit mean towards the shouting man, the docs tell me he is in no pain "its just the way he is". He seriously needs to sort that out, its not doing anything for him.

I will, as Depeche Mode once suggested, enjoy the silence.

Long weekend

... (to follow from below) ...

I'm here until Monday at least. Bollocks.

X-rays reveal a lot of trapped wind (which has been causing pain and discomfort and is more 'serious' than it sounds, so stop sniggering at the back) and a shadow over the left abdomen side - which could be operation scars or a chest infection.

I have to stay until my white cell count is up, as they don't want me leaving and ending back in here straight away, as I'm not 'better' yet.

I am slowly going insane, as the man in the room next to me shouts/screams every 7 seconds and has been doing it since 5am - I kid you not. I've just demanded to be moved or I'll discharge myself (which I won't) but it is literally driving me insane (your sympathy would be depleted by now, trust me)

God tests me on a daily basis. There are no good days any more. Just OK ones and ones like this where you're staring at a white wall, listening to someone shout at the top of their voice all day, as you contemplate the viability of administering a mercy killing using an NHS disposable razor.

Enjoy your weekend ... Please, for my sake.

Close call

I'm writing this from a hospital bed on my blackberry. Forgive typos and such like.

I'm going to try to cut a long story short.

Yesterday I went to see my GP about my general stomach discomfort. By the time I got to him (4:30pm on Friday), I was in agony in my stomach area. He examined me and realised it was an infection, he took my temperature and it was 39.5 and instantly got on the phone to book me a place at Watford General AAU unit.

I was driven there and quickly put into a isolated room where a long night being pumped with drugs started. Lots of antibiotics, xrays, blood samples and god-knows-what. My temp hit 40.

The danger of all this, is that I have no immunity - low white blood cells from chemo and no spleen. So an infection can lead to septicaemia very quickly and can be a killer in a day. Hence the panic.

The good news is this morning I'm feeling a lot better and my temp is under control and my stomach is a lot less sore. I've yet to see a specialist today who can tell me where we are at but I know I'll be OK.

I imagine they will want to keep me in all day and therefore probably night.

You kinda do start to wonder what the hell you did in a previous life to deserve all this, but I'm still smiling.

Occasionally through gritted teeth, but still smiling.

Sent from my BlackBerry® wireless device

Monday, 14 June 2010

so far, so not bad

Quick update. Still don't like talking about chemo. Despite choosing to write a blog about it. Oh, the irony.

So, how is the first R-Chop session treating me?

Well, so far the dreaded nausea has been somewhere between 4 to 6 out of 10. Which is good news.

I've actually only been sick a few times since Thursday and then, without meaning to get too graphic, it's more of a retch of acid than a full blow chunk-blower.

My getting-quite-good-at-being-a-dad-Dad came up for a few days and he commented on how much better I seemed and how much food I was eating ... I'm pleased to say that I'm eating well .. and took advantage to shovel lots of good food into me.

Getting things out the other end is proving a little more tricky still ... which can make me miserable ... but I won't dwell on that too much. The anti-sickness drugs don't help that situation either, so I've been really stringent with the amount I take. Which is no bad thing ... the less drugs the better. Gakking down 12 or so pills first thing every morning really is a grind.

I am reaching the end of the first phase of this chemo. I've been taking steroids and various drugs to keep me stable - these are now stopping and apparently this can make you feel worse for a while during a second phase that last around a week, but I can't actually see how it will make me feel nauseous ... tired/drained perhaps, but I am optimistic that it won't be worse 'sickness' wise (my pet hate).

I've been at work today (well, this afternoon) - which is pretty amazing - and have been quite 'on-the-ball' and a lot more 'physical' than before. The frustration comes when I'm piling on a bit of healthy pressure on myself,  running around the office, making phone calls, multi-tasking, 'getting moving' - then I suddenly find myself with strange stabbing pains returning in my chest, feeling sick and I then find myself retching in the toilet, whilst my concerned friend brings me water.

Overall though - I'm chuffed to be honest ... I am reserving air-punching celebrations until we've got through a good 10 days - it's only been 4 so far ... but as the title above you says, 'so far, not so bad'.

Onwards ....

Thursday, 10 June 2010

R-Chop - first cycle

I am back at home on the chemo couch, feeling a little nauseous but I'm OK.

The good news is that the treatment was relatively painless. It was a long day, the first antibody took 4 hours to drip in. There was then four big syringes to push in (each takes about five mins) and a whole bunch of tablets.

I wretched a couple of times, feel rough throughout but it was not the drama that AVDB was (remember I don't have a PICC line anymore).

I'm not going to write much, as I don't want to think about as it still makes me feel a bit sick - but just to let you know that 'it went'.

Thanks for the texts, emails.

Monday, 7 June 2010

if it's not one thing, it's another. sometimes both.

Right. Pay attention. Big news and all that. Game changer.

I've known some of this for a while, but didn't have the details, so I've kept quiet. Now I'm armed with a bit more information, I'm able to pass it on. All in glorious bullet points.
  • The spleen was removed and tested. Lymph nodes were also taken from my pancreas and other areas.
  • Tests reveal that all of the above test positive for Diffuse large B cell non-Hodgkin's Lymphoma
  • On going back to the original lymph node, taken from my underarm back in December, it was confirmed that this was definitely Hodgkins Lymphoma
  • I was therefore showing two types of Lymphoma at the same time (as we now know that spleen was Diffuse B cell Non-Hodgkin's Lymphoma at the same time that lymph node removed was showing Hodgkin's)
  • This is very rare ...
  • ... but it has been seen, that the cancer 'morphs' from Hodgkin's to Non-Hodkin's - we simply caught it in the middle of the transition back in December (don't ask me to get any more technical that this)
  • To sum up this part: I no longer have Hodgkins Lymphoma, I have Diffuse large B-Cell Non-Hodgkin's Lymphoma (which I shall call NHL from now on)
  • I am a very special boy, huh?

Breath ....

  • New cancer = new treatment.
  • Chemo will no longer be the dreaded 'AVBD', but something called 'R-Chop'
  • It's not supposed to be as 'heavy' as my previous AVDB treatment - side effects are less intense
  • I start my first session on Thursday the 10th June. A few days.
  • Each cycle is three weeks
  • Unlike AVBD there is no 'A' and 'B' treatment. Therefore, each 'cycle' really is one chemo session.
  • I am booked for 4 cycles before another full scan (ie: 4 x 3 weeks = 12 weeks)
  • I am limited by the amount of this chemo I am allowed to take, as one of the drugs is basically the same as in AVBD and each treatment raises the dangers of a heart problem. My consultant seems confident than I do have one, despite my protests.

Breath ...

  • I am currently anaemic
  • I currently have a large amount of blood platelets - I am at risk of deep vein thrombosis
  • I will be expected to self-inject the 'white blood cell' boosters into my stomach, 5 days after chemo (for 3 days)
  • I am at high risk from infection after chemo - more so now I no longer have a spleen.
  • If I get a temperature of 38+, I must get to Emergency asap.
  • It was drummed into me, that I am, apparently, 'very sick'... 
  • ... my lymphoma is making me ill, tired etc / not the operation after-effects
  • "Have you got any fucking good news?", I did enquire

Breath ...

  • Had I come in showing 'just' this type of B cell NHL, then my 'prognosis' would be very, very good. Around 90% +
  • However, as I have this rare morph and type, then sadly, we are looking add slashing those odds down to about 60%.
  • Either the Lymphoma will not react to the R-Chop treatment (unlikely, as it did respond partially to the AVBD) ...
  • ... or 'relapse' starts to occur. The consultant was reluctant to talk about that. 
  • "So that'll be a 'No', then", I concluded.

And exhale ... you did well to stick it this far.

You're up to date ... I don't have anything to add. What is there to say?

Onwards, onwards .... Once more into the breach, dear friends, once more ... 

that feels a bit sore

First of all, for those that were expecting some of the long 'memories from a hospital' type blogs I promised, I've decided against them for mixed reasons. What is going on now seems more important than back then - and I'm about to post up some Big News.

However, I will very briefly tell you this one story, as I know you all like a soap-opera.

Right before my actual operation, in the pre-op room, I was given an epidural (spinal). I was told if I didn't there would be a tremendous amount of pain afterwards. Ironically, as I came to in the post-op room, I would describe the pain I was in as significantly more than 'tremendous', regardless of this magic spinal fluid.

I went into some sort of shock/shaking fit, shouting for pain-relief. A very long 30 mins later I was injected with something that helped me stop shaking and retching (on fresh internal stitches, oh yes) . This respite was taken as an opportunity to move me to my hospital cell/bed. But the pain soon came flooding back. I called repeatability for help. Some 2 hours later, the nurse who fitted my epidural came to look at where it was placed. It wasn't news to me that it wasn't in place.

Apologies were made and I was told my next best option was a self-administering morphine machine.

Sure.

Just. Hurry. The. Fuck. Up.

Two hours later said machine arrived.

So there you go. For the first 4 hours after having *that* spleen removed there was no pain relief. Pause for a minute and let your own head work out how much that might 'smart a bit'.

The next time one of you females say to me, in your holier-than-thou voice, 'you men don't understand real pain - you never have to go through childbirth', I might be inclined to offer you a Pepsi Challenge on it.

"Here love, let me take out this 8.2kg organ from you - a couple of paracetamol should see you right ..."


I hear-by award myself a 'very brave boy' badge. Pass the sewing kit.