swing low

I have just returned from the hospital and above you'll see my blood count results. It's fair to say that I am officially 'neutrophenic' now.

Have a giggle at what my 'value' is compared to what a 'normal range' is. Pay attention to the 'critical' Neutrophils.

Still, this is all to be expected, this is what the chemo does - kills cells.

They reckon I will be slowly dragging myself out of this hole in the coming week - the obvious danger is that I'm completely wide open to infections. I have to keep a close eye on my temperature. Rather surprising, I was told that I could call '999' if I get into trouble in the night. I guess potentially life-threatening is what Ambulances are for ... it just never really occurred to me.

I have a blood transfusion tomorrow - two bags of blood to be given, starting at 9am and will take all sodding day. Tedious isn't the world - lying on a day-centre couch, waiting for bags of blood to drip in. Still, it might give me some energy. And God bless iPad.

That's it - onwards, onwards ... more hospitals tomorrow *sigh*

your crosses fail

Uncross everything. It didn't work.

It's been confirmed I'm here for "about a week" longer. Thank you for my 120 minutes of unfounded hope.

My 'neutrophils' (white blood cell count) should be about 4 when healthy and they are heading south now below 1.8. Obviously this is the Danger Zone they want to see me over, where infections can spring up in a heartbeat.

I tried to go down to the shops. I wasn't allowed as my blood pressure is still very low when standing, so I'm literally just sitting on a bed 24/7 now.

Obviously I'm fucked off. But accepting. There's nothing else to be. There's no point stressing too much, as even when I get out, it's all got to be repeated, so it's not like there was a brilliant light at the end of the tunnel.

I guess I was just looking forward to a coffee shop with some mates, a bath, some proper WiFi, watching HD soccer, a bit of retail therapy and some music making ... The odd things you miss.

I guess all that might be irrelevant to me soon, as I crash and don't feel like doing anything at all except sleeping. Best get it out the way ... Time moves quick enough ... Its not as slow as you might expect.

Still, who'd be me, huh? Whatever you're up to this weekend, I'm sure it will be more exciting than what I've got on.

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

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

tramatic day: nothing happened

I've just about had the worst day I've had for a very long time. And nothing happened.

I turned up for chemo. The moment I walk into the unit, I feel sick. Really sick. I run to the toilets and they are occupied, so I run outside and start ... crying.

I haven't done much crying since all this happened. I used to cry a lot, but for some reason, I don't really cry about cancer. I cry about chemo though.

A nurse comes out and does the stroking the arm thing, encouraging me to let it out. Which I do. This is now officially the most amount I have cried about my situation. The timing is not idea.

I return to the unit. The sickness is stronger. Officially, it's called 'anticipatory nausea' and officially it is fucking nuts. My whole body is as sick as if I've had chemo. I need to keep a sick bowl by my bed as the nurse starts to take my blood from my PICC line.

I now have a wait - regular readers will know that my white blood cells are useless at regenerating themselves in 2 week and invariably I get sent home. Having low white cells is known as being neutrophenic. My blood is sent 'upstairs' for testing - the results take about 90 mins to come back and determine if I am 'well' enough to have chemo.

As I wait there, I am feel rougher and rougher. As you can see from my mobile rant earlier, the environment doesn't help. Sick. Sick. Sick.

I see another patient who started having treatment after me and is on his last treament today. He has had the same 'ABVD' drug treatment. Although he displayed little of my symptons at first, his experience of anticipatory nausea is starting to echo mine. He talks of the how looking at the blue NHS lunch boxes makes him sick and how each treatment is worse. Mercifully for him, his treatment has been relatively short and today should be the last. It would appear I'm walking a much longer road than him. I wish him well and hope, for his sake, I never see him again.

After an hour or so, I'm told the news. I am neutrophenic again and am being sent home. Another 5k of NHS chemo drugs to be poured down the plughole. That stuff doesn't keep. They sensibly realise that from now on, I'm to have my blood test the day before, so the drugs will only be ordered if I am able to take them. I reckon I've been responsible for about £20,000 worth of chemo wastage. If you're reading this in America, you'll now see how us Britian's could not understand your resistance to Obama's health reform. As flawed and cash starved as it can be, the NHS is a bloody miracle. You should be grateful you have a president who sees it the same way. I would be screwed right now, if it wasn't for the NHS.

Mental exercise: Imagine you have a mentally damanding test to do. You are nervous. Very anxious. You don't want to do it. Perhaps it involved some physical danger, like jumping off something high or getting into a bath with spiders - whatever freaks you out. You are full of fear. Full of anxiety. You feel slightly sick. At the last moment, just as your anxiety is at it's highest, you are told you don't have to do it. The anxiety drops, the fear dissapates and relief rushes in.

So I'm told I don't have to have chemo. But the sickness doesn't drop, doesn't dissipate, there's no relief. I'm still feeling very, very sick. Shortly after, the nurse detaches my line and flushes it with some saline. I grab my sick bowl and wretch furiously into it.

Finally I get to leave. To suck down some fresh air. That should help. It doesn't. I am still sick.

I have a plan. To eat. A dear friend takes me to a pub, where I have a vegetarian chilli with rice, followed by a huge piece of chocolate cake and icecream. The plan is to change my body chemistry, the smells, the tastes, the feelings - yet, although I enjoy the meal, as I walk back out into the carpark, I realise I'm still feeling sick,

So, I go home. I take a handful of anti-nausea tablets and go to bed. At 2:00pm. I fall asleep in a heartbeat and the next thing it is 8:30pm.

I still feel sick, but slightly better. As I write this, I feel sick.

I feel as sick as if I have had chemo.

The insanity of this situation is hugely apparent to me. Today, I went to a hospital, had some blood taken from me (didn't even need a needle, direct out of my PICC) and then I was sent home.

I feel like I've been through an emotional wringer. I never realised that anticipatory nausea could be so devastating. It's now 22:30 and I still feel ... sick.

I've been given some Lorazepam for next time, to take before I return to the unit, to help, to sedate. I pray that it does for this is getting out of control.

My spleen feels big, treatment is delayed again. Nothing is very great news and does lead me to the same conclusion, that, at this rate, in time I will in time be looking at a full splenectomy and all that goes with it.

We shall see .. but for now, I sign off still feeling sick, yet knowing that nothing has happened to me to make me feel this way.

Insanity. Pure, insanity.

denied. again.

I'll keep this short-ish, as we've been here before.

I went for chemo session 3. They took my blood. I was sent home. Not enough white blood cells.

Annoying, but not totally unsurprising as I'm feeling run-down at the moment - I have a coldsore, a few mouth ulcers and a background sick feeling.

But I've learnt a new word today - Neutrophenia ... I shall quote from my latest booklet

"Following chemotherapy there is a risk of infection from bacteria or fungus in foods. This is for two reasons: 1) The white blood cells (neutrophils) that would usually fight food poisoning bacteria are at a low level. This is referred to as neutropenia. 2) The gut lining acts as a barrier between bacteria and the bloodstream. Chemotherapy and radiotherapy damage the gut lining making it easier for any bacteria to cross this barrier.


During neutropenia, the following guidelines will help to reduce the risk of food poisoning whilst still allowing as varied a diet as possible. There is no single agreed definition of neutropenia or severe neutropenia; the levels quoted below are very widely used but if a doctor uses different levels patients should be guided by those. The type of advice to be followed is dependent on the number of white blood cells in the bloodstream: this is known as the neutrophil count."

Link to booklet

And there is then a few pages about what you can eat and what you shouldn't. Fairly basic stuff that can be boiled down to things like, don't eat raw eggs, don't eat cheese that you find in the back of a gym locker, don't defrost your chicken, stuff it with melted ice-cream, refreeze it for a few hours, then leave to defrost on your toilet seat before having for dinner. Also, don't suck on a cows teat, dont bite the heads off gerbils and wash your hands after playing with your own faeces. Or someone else's faeces.

Slightly hacked off that I had to go through another round of 'find the vein' and wait around, before being sent home - but on the plus side I do have another week off to play Modern Warfare 2, my latest 'alternative to real life' distraction.

Outtahere.