Friday 31st May '02

I started my chemotherapy today. Had my first dose of it and I stay in overnight as I need to have two bags of the stuff 12 hours apart. I dunno what the name of the regime is called, but I had three lots of chemicals pumped into me. The first was the chemo itself (Cytobine Arabimoside), the second is anti-sickness called Ondansetron, specially formulated for sickness caused by chemotherapy, and the third's called Dexamethazone which is a medical steroid. Yep, the same one which caused my face to blow up like a balloon earlier this year. The reason for taking this undesirable chemical is because it 'deflates' the swollen tumours for a limited time. In other words, it wont work for ever. So, now I'll have another lot of chemicals pumped into me 12 hours after the first lot I had this morning. I have been experiencing increasing pain in my upper back recently which is why I have requested these bouts of chemo. Hopefully, this chemo will ease the pain by decreasing the size of the tumours in my back which are causing the incredible pain.

Saturday 1st June '02

I had my second bag of chemo this morning. But we had to rush it a little cos I had an urgent MRI scan appointment at Queen Alexandra Hospital; another hospital about 2½ miles away. Them MRI scans are well horrible! So this next time I went in, I thought to myself, "well, I've done it before, I can do it again!". So in I went. They are absolutely HORRIBLE and PETRIFYING. You have to spend a good ½ hour in a tunnel type of cavity in this machine whose diametre is just slightly longer than the width of your body when lying down. Then you have a few types of head clamps clamped onto your head and neck to keep you still. And then they put some big headphones on you to feed you horrible music so the loud banging noises are kinda softened. That was the second time I've ever had an MRI scan. The first time was no problem. They asked me if I was claustrophobic and I said no 'cos I wasn't. But I think I was claustrophobic when I came out!. It really is like being buried alive. It scares the shit out of you. You know you're a man if you can handle a few of them scans and not have a panic attack, which is what I nearly had. When I went in, I went in with my eyes shut as they told me to and to keep 'em shut until it was all over (at least ½hr!). Totally clamped up to my eyeballs so I couldn't move. The bed slid into the machine and these clamps were scraping along the inside of the tunnel type thing where it was so close to me. I had opened my eyes 'cos my face had started itching, and my mouth got really dry and saliva-less and so I started to call out to someone and was waving my legs and feet but no-one saw or heard me as the door had been shut. So I pressed the emergency thing I had in my hand which I could have easily dropped and not got any attention. Then the woman came and got me out of the machine and asked what was the matter. I just said I couldn't handle it. Especially with all them clamps on my head. So She said she'd take one of 'em off that wasn't essential. It ws just there to keep me still. As long as I promised to keep still. I PROMISED. And she also put a mirror thingey above my eyes so I could see out of the tunnel thing and through the control room window as it was in line with the tunnel, so I could wave at them through the window, and they'd wave back. Then instaed of putting Beethoven on in the headphones, they put on some latest radio hits which made it all SO MUCH BETTER. The best thing HAD to be the mirror thingey. If it wasn't for that, I may not have gone back in! So I finally got the scan outta the way. All that was immediately after the chemo. It was not a nice experience.

When I got back to the hospital, I then had a bloodtransfusion which lasted about 7-8 hours. At first when they wired up the blood bags to the existing needle-in-back-of-hand, it didn't work out as planned. Where there was no flow through the needle for some hours, the blood in the needle must have clotted. So when the fresh blood from the bags came rushing down the tubes, IT STANG LIKE EFFING HELL! I nearly ripped it out of the back of my hand. So they just put another needle in the back of my other hand. You've gotta remember that after 5ive years of chemo and needles, all my veins are not what they used to be. It takes some time to find a usable vein in which you can insert a needle. And as a result, even when we think we've found a decent vein, it don't always work out 'cos the veins are thin and worn out.

I am VERY PISSED OFF WITH THIS WHOLE BUSINESS. I wish it was all over so I can live my life how I want to, again. SOON.

Sunday 2nd June '02

After having the chemo over the weekend, my pains went away quite a bit. I was really happy! I felt like I didn't need to take my pain-killers. Before the chemo, I was on about 60mg of MST twice a day. I was feeling really optimistic about getting off the MST as I don't like being dependant on a drug just to feel normal. But then as the week progressed, the pain started coming back, but this time even worse! I started to get worried. I've also been put back on the dexamethazone (medical steroid), another undesirable drug.

Sunday 9th June '02

The pain really is unbearable sometimes now. It has been so bad sometimes that I have cried and made 'hurting-noises' out aloud that I wouldn't be surprised if people walking outside could hear me as they walked past! So I've had to increase my MST dosage to about 120mg twice a day. Shame, I wanted to lower it!

Tuesday 11th June '02

Today, I had an appointment with my oncologist. An oncologist is a doctor who specializes in cancer treatment and cancer in general. Unfortunately, today I got bad news. Well, all I see it as is a slight mishap. I'll get over it. The news I got was that the tumours in my back (upper-back, just below my neck) had kinda grown and spread, causing two of the bones there to collapse. This of course is very painful as the bones and tumours both squash and pinch the surrounding nerves and veins etc.

The doctors said that if this carries on (i.e. no treatment), then they would eventually cause paralysis from the neck down. To treat this, I would require some radiotherapy pointed at the region where all this is all taking place.

And guess where that is, yep, towards the spinal chord. As a result, there is a 5-10% chance that the treatment itself would paralyze me anyway!

Well, what can I do? What the hell, I'd may as well take the treatment. I'd rather have a 5-10% chance of paralysis than about 90%, wouldn't you?

Already, just from what the tumours are doing now, I can't feel the right hand side of my right hand. (The little finger and the next two fingers). It's a nightmare trying to type on a keyboard so imagine me trying to type this! Another thing is signing for my card when I pay by debit card in a shop! The people behind the counter really double-checkin' the signature. It's well funny. Tell ya what though, because of the pain, my MST (morphine) dosage

has gone up from 90mg twice a day to 300 mg twice a day. That's not including the liquid morphine I take on top of that for instant pain relief. The pain can really be unbelievable. I'm still waiting for the doctors to get in touch about when the first radiotherapy appointment's gonna be. I'M WAITING YOU BASTARDS! My hand's feelin' really numb.

Monday 17th June '02

It's m'mums birthday today! My sister & I took her out for a meal to a Thai restaurant. Well nice!! Food was delish!! On the health side of things, I am now on about 300mg of morphine twice a day as well as the dexamethazone, and am now on some painkiller for nerve-based type pain called Diclofenac . On top of that, I am now also taking Carbamazepine , and Amitriptyline .