Well, no, it wasn't really. 3rd March 2005. The previous day I had been to the Onc. Clinic to have my blood tests: they have to check your blood counts to make sure you're well enough to have the chemotherapy because the treatment lowers your white bloodcell count: which means you can't beat infections very well (as I experienced later!). The oncology clinic is a slightly scary place: an odd combination of being weighed and sitting in corridor after corridor while members of the Oncology team steam up and down these corridors between each others consulting rooms. And they're all women in heels - so it makes a fantastic clackety noise the whole time. And you sit there with magazines as old as the hills - I could never read the magazines, I could never read anything while I waited. I would feel so sick and anxious that I couldn't concentrate on anything. Eventually I used to do crochet while I waited because it didn't require too much engagement and it worked as a sort of soporific too. I used to have a little mantra in my head that said 'each stitch makes you more and more relaxed' and did kind of work.
So, you sit there in the corridor - which still has the remains of Christmas decorations (tinsel and such) stuck to the ceiling where it hasn't been completely taken down, staring at blank walls that need repainting and I would studiously try to avoid being aware of the other women around me. If I were unlucky there would be some discussing their treatment and comparing experiences. I hate that. I can't cope with it. I have trouble seperating myself from the experiences of others: I sort of assume that it'll happen to me. So hearing the experience of the woman who walks with a stick because the cancer has spread to her bones and she's having to have more chemotherapy which is painful - is not a good place for me. I admire her stoic-ness and her determination but equally I'm scared stiff that it will happen to me. And scared stiff that every time she looks worse. And scared stiff that one week I'll come and she won't be there any more. And in no part of my head is there room for the possibility that she won't be there because the treatment has worked and she's finished it.
No, the only space in my head is for a scenario where the cancer will have won.
And I can't seperate my cancer from her cancer. If it has happened to someone else then I can't see why it can't happen to me......
But a lot of this was later - the first pre-chemo day was the sort of scary where you don't know the drill, you don't know what's really happening. And you're surrounded by people and you feel trapped and really, I just wanted to curl up in a ball and hide under one of the chairs in the waiting area. I actually considered it. I really did. In an active, 'perhaps in a minute I'll just get up and crawl under that chair' kind of way: 'would anyone notice?'. But I didn't - I just sat there surrounded by my parents and by David and we waited for the great AJ to call my name.
When I had seen her the previous week she had run through all the side effects - of course - and had said that with the first set of drugs she was giving me there was a chance my hair wouldn't fall out and that they could try using the 'cold cap' to help it stay in. This means that before they give you the drugs and while they're giving you the drugs they put this helmet that's been frozen over your head to cool/freeze the hair folicles which is supposed to prevent the drugs from affecting them as much. I figured I'd give it a go but she said I'd need to have my hair cut short.
I should stop and say at this point that my hair was long and dark and straight - past my shoulders-long and short meant a couple of inches long max. So, I went and had it all cut off. It was funny because I'd never dared to have it cut short before - I'd had it bobbed, but never above my ears. I was too scared - of what, I have no idea any more. When you've had no hair at all the thought of short hair is nothing scary. Perspective is an amazing thing.
So, I went and bought hair magazines and picked out some pictures and went and had it cut. It looked fantastic.
It was so liberating to no longer be scared of it.
And then, that day at the clinic when Alison saw me for the first time since I'd had it cut, she said 'nice hair'. She noticed, she remembered, she was kind enough to comment. That meant so much.
And that day she went through the side effects again and we went away for another day. I'd been to see the chemo-suite the week before - and hated it. It was a small space divided into two with big windows with a fantastic view of the London skyline all down one side (It was on the seventh floor). You could see the dome, St. Pauls, the London Eye, the Houses of Parliament - just everything laid out before you. But inside the room was crammed with chairs - attempts at comfy chairs, padded but covered in that horrid plastic covering that means when you sit on them for any length of time your body gets all sweaty where it's in contact with the plastic. In the corner was crammed a desk and files for the admin person and everywhere were those drip stands -- I hate those drip stands. Just the sight of them makes me go hot and cold with anxiety. Being attached to them is awful - like being trapped. The room was full of people, seated round all sides of the room, there were curtains between the chairs but you couldn't have them drawn the whole time you were there - it made the room too claustrophobic. And so, everyone sat there trying not to look at each other, trying not to be there, attached to drip stands with bags of toxic chemicals in them (which would be delicately covered in a pink bag so you couldn't see the color of the solution - a little freaky. 'Pretty in pink'. A lame attempt to try and make it less scary but somehow it made it *more* scary.)
The walls were painted pink too, and the curtains were all floral - it made my skin crawl. It was such an attempt to make it 'pretty' and 'nice' but it couldn't detract from the fact that you'd just walked into a room full of seriously sick people.
Since I knew I'd be having chemotherapy everywhere I'd been in the hospital people (medical people) kept asking how my veins were and looking at my arms and which point they'd 'hmm' and 'haw' and generally make discouraging noises. This was not helpful - I started to feel quite concerned about the whole process.
So, First Chemo Thursday: I can't remember the start of this day; I can't remember getting to the hospital this day. I don't remember anything until I was in the chemo-suite. Thankfully a lot fewer people were there because it wasn't a Wednesday. I sat in a big chair that dwarfed me with a view out of the windows - but because the chair was quite low and I'm not so big when I sat in it all I could see was the sky. I think it was a pretty blue sky that day with a few clouds but I may be confusing it with all the other times I sat there.
Marta was the nurse that day - she started by trying to put in the cannula in the back of my left hand.
I don't have 'needle-phobia' but I'm not fond of having stuff stuck in me and what I really am a bit phobic of is having 'unnatural' objects left in me. Which is why I don't have my ears pierced and I can't write on the back of my hands (it makes me shudder when I see other people writing on the backs of their hands).
So I was doing the 'it's ok, it's ok, you can do this' mantra in my head and firmly staring out of the window at the sky while she did it. She made quite a palaver of inspecting all these various veins and tapping my arms and so on. Once she'd got it in she tried to flush it with saline and it was obvious that it wasn't in properly - she had put the needle right through the other side or something so out it came. At this point I was white-cold with panic - if I hadn't felt sick and faint I would have lunged for the door and not stopped running until.....until where, I don't know because of course, what I was running from was in me and I could never escape it by fleeing. And I think that knowledge was the only thing that meant I got through everything.
However, I did feel sick and faint and I didn't bolt from the room. I sat there with a fan on me, sipping water and eventually, she tried again in a different spot and succeeded. I was left with a purple and green and yellow bruise covering half the back of my hand for a month from where it failed.
So, there I was, hooked up to a scary drip stand with some sort of steroid that acted as an antiemetic with a bizarre helmet on my head that was so cold that my sinuses were twanging and they hadn't even started the chemotherapy yet. I'd taken my minidisc player with me, but of course I couldn't listen to it with this helmet on and I'd taken a favourite book but I couldn't concentrate to read it. Sitting and waiting and trying not to stare at other people. I'd become one of the crowd.
The treatment itself was a series of three injections into the cannula. This first round of drugs was a combination called AC (A= Adriamycin (doxorubicin) , C= Cyclophosphamide) The doxorubicin was particularly alarming since it's the color of cherryade. It's really quite alarming to see this red stuff snaking up the tube and into your body and all I could smell was the alcohol wipe she'd used on the connection between the cannula and the syringe. I can't smell that smell today without sick anxiety feelings. Other than that, the most bizarre thing was that I didn't feel anything at all.
She was injecting me with cytotoxic chemicals that, if they come in contact with your skin, can damage and disfigure you; with chemicals that were going to kill thousands of cells in my body - some cancerous, most not cancerous... and it didn't feel like anything at all. When she'd finished they gave me a plastic bag full of more antinausea, antiemetic medication to take away and instructions to call the suite or the 'cancer ward' if I had any problems and instructions to come back the following week for a blood test to see how badly my blood counts were going to react.
We went home.
We had dinner. Pasta with tomato sauce. I got part way through eating and couldn't eat any more. After having been so calm, so collected throughout it all I suddenly snapped. Crying, I declared that I would not do that again, not like that, I would not sit in that place, not with all those people, not being stabbed repeatedly to try and get the cannula in, not watching that stuff going into me. I would not do it like that again. They would have to do something. I could cope with some of those things but not all of them.
Do you know that, apparently, when children say 'I won't' what they mean is 'I can't' and when they say 'I can't' they mean 'I won't'. I believe this to be true (for a given amount of true) because I saw it in myself so many times last year. Above, I said 'I wouldn't do it' - I truely meant I could not. We thought maybe that they'd find somewhere else I could sit. That wasn't their solution - but we'll get to that later.
Not long after that I started to feel sick and *so* tired and I went to bed - it was about 7pm about half an hour after that I was throwing up. My dad and David sat on the floor with me in the bathroom - they couldn't really do much. I think that was the first time David had seen me ill - before all this I hadn't really been sick/ill. It must have been a bit frightening to see me so incapacitated. For my dad, of course, it was something he'd seen many times before - of course I was much smaller - a child. And he stroked my back while I threw up. This makes me cry so much - keening-kind of crying - the rocking back forth kind. The thought that my parents had to watch me go through this makes me so sad. Noone should have to watch their child be so ill. I can't imagine the helplessness. My mother said to me after the diagnosis day that she would do anything for it to be happening to her rather than me. That she'd had her life, that it wasn't fair that I had to do this. But at no point, not for a millionth of a second did I want that. I *never* thought 'I wish it were you not me'. NEVER. I almost think it would have been worse if it had been her. I don't do helpless very well and that would have been utter helplessness. How did I get to be the daughter of such amazing parents? My 'downness' on myself is such that I don't even think I deserve my family. They are too good for me.
Anyway, so much for 'I don't do sick' Jones. Think again, lady because I threw up the contents of my stomach many times over. And all your pills and all your potions couldn't stop that. For the next three days I felt nauseous - I did all my throwing up that first night. I also spent the next three days in a high state of anxiety - not *about* anything particular just twanging nerves, feeling like I was bouncing off the ceiling.
That was the end of the first day. There is so much more that happens, boys and girls, but you'll have to come back another day to hear about Dr Newby, the portocath and the febrile neutropenic sepsis.