Aurora Greenway vs Oxford...

Have you ever seen the movie Terms of Endearment? Shirley McLaine (Aurora) plays a frustrated mother watching her daughter die of cancer (Emma, played by Debra Winger). Although it's a very moving story it has so many laughs in it you forget it's supposed to be sad. Well a couple of weeks ago Mum and I were watching Terms of Endearment and the sequel called The Evening Star. There was a scene where Emma is in her hospital bed and in a lot of pain, waiting for a nurse to bring her pain medication. Aurora goes into the hall and starts asking nicely and then becomes frantic, screaming at the nurses to bring pain relief...

"it's ten after four, you said she had to wait till four now it's ten after four and she still doesn't have her pain medication!!!"

Watching this gave me the giggles because it was at that point i realised my mother was Aurora Greenway!!

Back in 1998 i had Viral Pneumonia. The Virus had attacked my Brain, Lungs, and Heart. I was in hospital for about five weeks but due to complications i couldn't walk properly, talk, swallow or move my hands. The left side of my body was like I'd had a stroke and was so heavy i couldn't lift my left arm or leg and the right side of my body had an uncontrollable tremor but the most frustrating of all was not being able to talk properly.  I could see the sentence in my head but couldn't get it out my mouth.  I was living in England again and Joe was only about two and a half. Fortunately, i have heaps of family in England so Joe stayed with an Aunt of mine. Mum caught the first plane over, with my baby sister, from New Zealand to rescue me. There's loads of funny stories about this time in my life but that's a whole other blog!

Anyway as i was saying, i spent five weeks in hospital with physio and various therapists to help me walk, talk and use my hands again and then i was sent home. After a couple of days i was sitting at the dinner table when all of a sudden i got a massive headache and my voice went really deep and even slower than it was before that. A bit like one of those old tape decks when the battery goes low and it's about to chew your cassette up. Mum rang for an ambulance and i was back in hospital. I don't really remember much else until the next day when i still had the terrible headache. I had my head under the pillow to block out the light and hold my pounding head when mum and my Auntie Pat turned up. Apparently i had gone hours without pain medication because the nurse thought i was asleep and didn't want to disturb me (bearing in mind i couldn't talk at that stage and couldn't move my hands to grab the bell). So all i remember is Aurora!

'what do you mean you didn't want to disturb her, can't you see she's in agony etc...get me the doctor'

That was their next mistake. His name was Joseph Joseph and he was a general medical registrar. I really thought i had vision problems when i saw his name tag. Cue...Aurora!!

'what do you mean you don't know what's wrong with her! You're the doctor, find out, do tests..'

To which the very suicidal doctor replied,

'it would be easier if she was dead because then we could do a postmortum'.

Unfortunatly that isn't even an exaggeration because apparently even the ward sister stood with her mouth open when he said that. I think it was at that stage Mum had him by the neck and told him she was sick of dealing with the monkey, she wanted to see the organ grinder? I don't remember much of that conversation but i do remember seeing my Aunty's face as mum was screaming at the doctor. She was going lower and lower down the side of my bed as if she wanted a big hole in the ground to eat her up. Ten minutes later i was given pain relief and put in an ambulance to 'blue light'  me off for a MRI scan which showed Encephalitis and lesions on the frontal lobe of my brain. Thank god for Aurora! As i said though, this is a whole other blog and needless to say my determination got me through this too.

Bringing us back to the present day, Aurora is still tucked away in the deep dark depths of my trusty side kick, waiting to bare her ugly head. So last week returning to the Churchill to discuss drug trials i was on full alert. I had pre-warned her before we left the house, like a naughty child, to behave herself while we were there. Neither one of us have a lot of confidence in the hospital but I'm more able to see it from their side of view, whereas Mum is strictly black and white. Our trust and confidence was knocked last year when i was undergoing another trial.

I'd signed up to take part in a double-blind trial of AZD6244. This means it is completely randomised and even the doctor doesn't know if you are getting the drug or a placebo. It had some minor side effects but the most common was a rash on the face. I never did get the rash so i doubt i was even on the drug and was being given a placebo instead. The AZD was taken daily in tablet form, three times a day and had to be taken no earlier than an hour before food or an hour after food. This was very confusing to start with but i soon got used to it. Along with the AZD i was given Dacarbazine, a chemotherapy that is most effective with Melanoma, every three weeks. For the Dacarbazine (DTIC) i was admitted as a day patient at the Churchill to have it administered intravenously. We would have to be at The Churchill Hospital for 10am but would never get the chemo before lunchtime because it was always organised chaos. Each person is assigned a nurse and mine was lovely but didn't instill a lot of confidence in us. The first time we went up there, nervous of course about having chemo, blood tests had to be taken and ECG (heart readings) had to be taken at specific times. The second, third and fourth times it was a lot more lapse. Instead of three ECG readings three minutes apart they would just take them one after another to avoid having to stand around for three minutes. Also it turned out there was only a couple of nurses that could actually put the I.V cannula in for the chemo and my nurse wasn't one of them. She could take blood but not put a cannula in. So to receive the chemo 2-3 different nurses would poke and prod unsuccessfully to put the cannula in. At first i thought it was because my veins were particularly difficult but then Charlie, the magic nurse, would come in and get it first time. So after I'd had all my veins punctured and still no line in, i would then have to wait for Charlie to become available to come and do mine.

Another problem was that each individual trial had a different protocol so the day my nurse was off was disastrous. No one knew what to do with me. For a procedure i was told would only take a 'couple' of hours, we were lucky if we ever got out of there before 5-6pm and being stuck on the Oxford Ring Road at that time is not pleasant after receiving chemo. I remember feeling like i wanted to just get out of the car and walk because the thought of being stuck in traffic would make me feel panicky, but i didn't have the energy to move. So in my head i would ask the angels to clear the roads for us and i would just keep repeating to myself, "it'll be okay, we'll be home in a minute"

After each Dacarbazine treatment i was so ill i couldn't get out of bed for 6 or so days and to be honest, it's the only time i've ever thought "enough is enough. i can't take anymore". On the day of chemo I would be taking nearly 40 tablets a day, mostly steroids, which would decline each day until i was back down to my normal painkillers and AZD. For the first initial week I was permanently queasy, i had terrible jitters in my legs, i couldn't keep still, i would sweat profusely out of every pore of my body, which smelt like vinegar, was bright yellow and actually stained a white tank top! I had panic attacks if Joe or Mum were ever out of the house where i knew they were safe and i completely lost my appetite. The best way i could describe it was my worse hangover multiplied by ten and lasting a week, added with morning sickness from pregnancy. The second week i would be very weak but slowly getting my appetite back and by the third week i was feeling much better. By this time though, it was time to go back and have it done again. It was awful and i wouldn't wish it on my worse enemy. But in the back of my mind i was telling myself it was worth it because it was going to work.

The final straw as far as the Churchill was concerned came on New Years Eve. This was, what turned out to be, my final chemo. As usual we got there for 10am. All the nurses and staff were in party mode and couldn't wait to celebrate the New Year but i knew what was coming so i wasn't so keen. I'd been telling my nurse about my side effects for weeks but because she never wrote anything down and relied on memory i wasn't sure how much was going in. So finally i told the lovely Dr Emma. She thought it may be a side effect of one of the anti-sickness tablets, Metoclopramide, so she changed it to a different type, Cyclizine. The I.V went in and the chemo was started. As usual it stung like mad but i would try to sleep to take my mind off it while Mum would people watch. This particular day one lady had her chemo stopped rapidly because it had expired and another had to see a plastic surgeon because the chemo had gone into the tissue and not the vein (that's how toxic it was).

When my chemo had finished i woke up feeling fine. I'd never felt fine before. By this stage i would normally already be getting the anxious feeling and be seriously queasy, but there was nothing. We went home and i was still fine. That evening I'd noticed that in my bag of drugs they had forgotten to give me one of the steroids but it was too late to do anything about it so i would just play it by ear on how i was feeling. A couple of days went past and i still felt fine. I was even starting to wonder whether they had actually administered the chemo at all because they weren't very focused, but i think it all came down to the side effects of the anti-sickness and the fate of them forgetting one of the steroids.

So as you can see, my Aurora has every right to be sceptical whenever we go to Oxford. But i'm pleased to say she behaved. There was no neck grabbing, snide remarks or evil eye being given over the rim of her glasses. Partly this is because the Prof in charge of trials told me everything i wanted to hear and partly it's because i blocked her path of vision so she couldn't see or say anything. It was histerical. So the good news was, we didn't get thrown out or banned and if all goes well and i can stay alive and well, i'll be doing the trial i want sometime next year and without the Dacarbazine.

Please leave any questions or comments about my blog because i would really appreciate the feedback.