Table of Contents

1. Life before
2. Finding it
3. The first biopsy
4. Between biopsies
5. The second biopsy
6. Chemotherapy
7. Radiation
8. Surgery

Surgery

Surgery was to take place on Wednesday 16th of July. I’d seen Dr Tam the previous Tuesday, at his offices at the Mater (rather than at Greenslopes), and pretty much just wandered in at said “It’s shrunk heaps, so when are we going to take it out?” (as opposed to are we going to take it out?) He said I seemed very positive… I think I said “Have a look at the scans, and you too will be very positive”. I think I pretty much got in there and freaked out. I realized that this one interview was going to determine whether I live or die, and if he decided not to operate, I was screwed… I knew all of this before, of course, but actually getting to the interview really hammered it home. I had my fingers crossed under the table the whole time… And, because I was so nervous, I naturally became very cocky, cracked lots of jokes, refused to think about any of the bad stuff, and became a little brittle… but it worked, and he agreed to cut the damn thing out the following week.

He was about half way through booking me into hospital (on the phone) when I realized that I was being booked into the Mater… if I had to spend a couple of weeks in hospital, it was going to be at Greenslopes, damn it! So, I interrupted the call, he hung up, and then booked me into Greenslopes (which did mean surgery on the Wednesday rather than on the Monday). I was all set to go…

Mama arrived on the Monday. She and Dave had done the drive over two days, stopping in Redcliffe Sunday night. We had spent a usual fun weekend – we went out to Sirromet winery with my aunt and cousin for a food and wine festival. As usual, I pushed all the bad stuff out of my mind and had a great time. Denial is good.

So, Tuesday afternoon I checked into Greenslopes Hospital. That morning I had had a facial, figuring why the hell not, I was about to become a zombie for the next week or two, and, of course, a Mocha Caramellatte with cream and caramel. Tuesday afternoon was thus spent sitting in my hospital room waiting to receive guests… ie the anesthetist, the surgeon, the physio, anyone else who wanted to have a chat.

I was in the new wing at Greenslopes Private, the one pretty much dedicated to private patients. It was new, clean and very nice… I had a huge room to myself, with a bathroom, the bed obviously, and a couch, coffee table and armchairs for guests. Apparently they were still uncomfortable, but it’s nice that they were there…

The anesthetist came to see me, and I told her about my slight problem with the fentanyl patches… ie, I couldn’t bloody come off them. She wrote all this down, asked lots of questions, wrote down the answers, then wandered off and (presumably) threw out everything she had just written. (To be explained soon.)

My folks, the entire catastrophe, ie Mama, Dave, Tim, Dad, Beata and Sophie were all in the room that evening when Dr Tam and his minions (I mean junior doctors, obviously) came to visit. I said the family could stay, not realizing quite what Dr Tam was about to say… This was the compulsory visit where he tells me all the things that could go wrong, and then gets me to sign a consent form anyway.

Why do they not tell you all the things that could go wrong until the night before the operation, when it’s a little late to say you’ve changed your mind?

So, glossing over things like there was a 1% chance that I wouldn’t make it through the surgery at all (one percent! That’s like one in a hundred! They’re bad odds! If I was a horse, I wouldn’t bloody bet on me… or maybe I would. Bit fuzzy on this horse racing stuff), he got straight into the nitty gritty of this surgery. Basically, there are two large nerves running down the inside of my chest (and everyone else’s, I guess, although it was mine I was worried about!), the phrenic nerves, and they control your ability to breathe. There was a chance that one, or both, would need to be cut in order for the surgery to be successful, and to get all of the sucker out. Now, without the nerve to control breathing ability, I would need to be on a ventilator. There was a chance that I would adjust and be able to do it alone if only one nerve was cut, but not if both were cut. If both were cut, I would be on a ventilator for the rest of my life (presumably coming out of my throat).

Holy shit you must be joking fuck off you want to what bugger that for a joke no way no how you must be kidding there is not a chance in hell say what I beg your pardon you WHAT?!?!?!?!?!?!?!?!

If I’d known that, then I would have probably just said bugger this cancer stuff and bought myself a round the world plane ticket a lot earlier!

We then had this long conversation about the damn phrenic nerve (which I’d never heard of), and I was fairly adamant that I would prefer to take my chances with the tumour than have both nerves cut and have a bloody tube to breathe for me for the rest of my life. He said he was prepared to sacrifice one nerve, but not both, and I reluctantly agreed, although I was having fairly major issues at the thought of losing even one… funny how there’s this thing in my body I’ve never heard of, never thought of, never given a shit about, and now I desperately madly want to keep it.

Dr Tam also warned me that there would be junior doctors present and assisting at the operation, and I think I requested that none of them be allowed to wave sharp things in my general chest cavity.

One percent death, chance of frenic nerve slashing, resulting in bloody machine breathing, chance of someone bloody sneezing while holding sharp things and looking at my heart. Maybe I was Hitler in a past life.

I signed the stupid form.

My family was a little shook up, as was I, and I wasn’t mad keen on the thought of sleeping that night. I think they gave me Temazepam, I don’t remember. I do remember pulling my usual stunt and not thinking about the surgery. I read my book, blocked out all other thoughts, and as long as I had something to do or something to read, I could successfully not think about it.

I still didn’t sleep so well.

The next morning, I scrubbed with the little chemical spongy thing, got into my nice clean bed with the alfoil space sheets (significance still fuzzy), picked up my book, settled Pooh bear in for the trip, and did the waiting thing.

The HUNGRY waiting thing. I didn’t end up going into the siding (the waiting room) until about 5pm, so I was definitely a little on the peckish side.

Eventually we did go down to the siding, and I left the family with Pooh and my pillow, with STRICT instructions that both were to join me in ICU immediately, in the waiting room. Unfortunately, in the siding, I had no book, so might actually have to live with my thoughts (horrible idea!), so I requested a trashy magazine, which was duly provided. There was an ad in one of the magazines for jelly beans… and given my present state of hunger, they looked jolly good. One of the nurses there said that she had jelly beans there, actually… before realizing that I was about to go into surgery, and therefore was fasting. Jelly beans bad idea. It was quite an interesting conversation about jelly beans as far as these things go… I said I only liked the red and white ones.

I was very much the pest and decided I wanted to go to the loo one more time before going into surgery (nervous, me?) which meant that I had to get down from my sterile little bed, and someone had to come into the loo with me (not sure why… so I don’t run away? It was tempting…) but I figured things were only going to get a lot worse very quickly privacy wise.

Eventually we went into theatre… it was exactly like it was the last time (funny that), lots of people running around doing stuff, and I knew that I was expected to pretend I was just a cut of rump steak and accept that I was there to be pushed and poked. Slight issues getting an iv line in (who me? Nothing wrong with my veins…), and eventually it was put into my only good vein, inside my left elbow. Not ideal, since each time I bend my elbow it cuts off the iv supply, but at least it was a line in. I just shut my eyes and waited for oblivion.

I next remember seeing a clock saying quarter to nine… and I remember thinking that that took a lot longer than I expected. Then I realized that something was not right. I could not talk. There was a FUCKING TUBE DOWN MY THROAT. I WAS ON A FUCKING VENTILATOR. Fuckfuckfuckfuckfuck. I did not want this. This was not in the best case scenario. I remember trying to get the damn thing out, and that’s all I remember until seeing a clock that said ten past two.

Yes, I tried to pull the ventilator out, and yes, they knocked me back out as the best way of shutting up the hysterical woman (or as hysterical as you can be if you can’t talk).

Ten to two. I HURT. Everything hurts. I hurt, I hurt, I hurt. I am in pain. I hurt. I HURT big time. I bloody HURT. After the anesthetist threw away her little page of notes about me, she sat down and had a bit of a think about which painkillers to give me. ‘I know!’ she thought. ‘How about fentanyl? That should work well.’ Yes, fentanyl, which I have been taking for months and have therefore established a lovely big tolerance to. I was in huge amounts of agony, and couldn’t even talk.

Yes, that’s right, that stupid tube was down my throat. I think it’s supposed to fill your throat entirely, but I could still swallow around it, and continuously needed to cough (fun things to do when you’ve just had your chest opened, your lungs deflated, and your FUCKING PAINKILLERS AREN’T WORKING!)

I’m trying to make light of this. Maybe I shouldn’t. It was the most traumatic experience of my life. I’m crying as I write this, just remembering it all.

To cough, I had to firstly get the nurse to understand that I needed to cough, then she would suck all the saliva out from around the tube with a little dentist’s sucker thingy, then she would vacuum off the ventilator so my inside bits would contract in imitation of a cough. It was AGONY.

Then I had my thoughts. I was on a ventilator. How long was I going to be on it for? Did he cut the nerves? One? Both? Is this permanent? I was in so much pain, I did not want to live my life on one of these. Mental torment like that, combined with physical agony, does not a pleasant night make.

My chest was in so much pain, especially around my right ribcage (where the lung had been deflated) that all the other muscles around it, particularly my back and neck, decided to ‘protect’ the pain site and seize up around all the hurt muscles, so nothing more could affect them. That’s all well and good, except the seizing up of my neck and back ended up being even more painful than my chest itself.

Basically, I spent that night in huge amounts of physical pain, the bleakest of bleak thoughts, and alone, because they wouldn’t let Mama stay.

It was over a week before I could even think of that night without crying, a lot longer before I could talk about it (generally, not in detail) without crying, and, as I’m proving, it’s still not possible to talk about the details without crying.

At about six, after numerous (written) demands to take the ventilator out, they said that if I could breathe unassisted for fifteen minutes, they would take it out. I think it was easier for them to take it out than it was to keep restraining me from trying to take it out. So, I decided to bloody breathe all by myself for fifteen minutes. I watched that damn clock, and meditated on the second hand. It was the longest fifteen minutes of my life, and it would seem that my meditation abilities worked a little too well. I dropped off for a minute or two and the ventilator had been breathing for me. So, no chocolate biscuit for Jessie. I had to do another twenty minutes, which I did. I remember the first doctor of the day standing at the foot of my bed, saying “if we don’t take that out, she’s going to do it all by herself”. I nodded vigorously, and I think I tried to give it another pull to prove this point, until my hands were removed (again). The ventilator came out and I was clapped onto oxygen.

Mama was back at about six in the morning, VERY pissed off they’d she’d been made to go home. She had been told that they would keep my unconscious until morning, and the fact that I had been awake and alone since 2am really naffed her off.

The great thing about mama being there is that finally there was someone to give a shit that I was in huge amounts of pain. Rather than just patting me on the hand, she actually made noise about it (something I was literally unable to do), and eventually got me off the stupid and useless fentanyl and onto pethidine. The intense agony went down.

Mama informs me – I have absolutely no recollection of this – that I ALLEGEDLY called my nurse a ‘stupid fucking bitch’ because she was being so slow to get me some proper functioning drugs. The nurse, probably fairly understandably, was a tad pissed off, and there was no longer any compassion or gentleness in our relationship from then on. Once again, proof that this type of patient is a little old man who doesn’t make such a fuss (and, in my defence, whose nerve endings are a lot more deadened than a young fit twenty year old’s, and presumably, whose painkillers are working!) I think it shows unprofessionalism on her part, yes, okay, a patient who is half-crazed with pain abused her, but she should still not have become quite so brutal to me.

That was one of the only things that made the experience get through-able… I really did go a little crazy with the pain. I couldn’t think rationally, I was in so much pain, so all coherent thought left and I was just left crying and physically feeling. All I wanted was for the pain to go away.. that was my only thought. I was entirely focused on this pain, and wanting it to go away.

Politeness to the bloody nurse was fairly low on my list of priorities.

Once on the pethidine and off the ventilator, things were much better. There were so many drugs in my system, I was stoned out of my cracker, so all my memories are very hazy, but I wasn’t in the all-consuming agony, and I now knew that I would breathe again on my own (or if not, die during the attempt to replace that stupid tube – there was no way I was going to go back to that). Mama was there, I got my pillow and Pooh bear back, and my family flitted in and out. The stupid telephone rang lots, and someone in the family would talk to whoever it was and tell them I was doing fine, but that no, they couldn’t talk to me. I think I spoke to Amy, but I don’t imagine I was terribly coherent. She said later that she felt very special because she was the only one I did speak to though.

I had the usual array of tubes and needles sticking out of me from all ends, and the rather welcome addition of a catheter, so I didn’t have to get out of bed at all to solve the stupid bedpan/toilet problem. It wasn’t pleasant, but it wasn’t unpleasant either, and quite frankly, when compared to the pain of the night, it really didn’t bother me at all. I stayed in bed without getting up at all for about 48 hours, I think.

I was wearing a hospital robe and no knickers, but was beyond caring… it was more comfortable that I would usually think (again, everything paled in comparison to that first night!) There was always someone coming or going, but I was quite content to slip in and out of consciousness (I do so love pethidine). The next night, the guy next to me demanded to be taken outside. There was only one nurse on duty, there was no way in the world he could be unhooked from all his machines and taken outside, but he argued about it for over an hour. It was actually quite amusing.

I spent two or three days down in intensive care. On the third day I think it was, the extremely dishy physio came to haul my sorry arse out of bed. It was my first foray out of bed, and it was bloody difficult. Just the sitting up on the side of the bed was hard. But, as usual, because he was dishy, I probably made a little bit more of an effort, so we went for a walk for maybe three whole metres! Wow… sometimes I even astound myself… I have to say, it is very disconcerting to have some good looking guy not only supporting you entirely as you ‘walk’, but also holding a half-full bottle of your urine, which is still connected to you… dignity shmignity.

Just before I left ICU to return to the main ward, after a sponge bath, they put me in pyjama bottoms and a top… and I then proceeded to vomit all over my clean sheets and clean clothes. Not sure why I was sick, I just was. Unlucky. So, everything had to be changed again. Eventually I made it back to the ward again – the same room as last time as well.

I spent an entire week in that room, with only brief forays to the end of the hall and back. I don’t care how nice a room is, after an entire week, you begin to go a little nuts. For the first couple of days, I was still taking lots of pethidine, so I just swam in and out of consciousness. I remember Amy coming to visit, and she just sat by my bed and held my hand. I remember thinking it was okay if I fell asleep while Amy was there… she would understand. I didn’t have to impress her or make a huge effort… it was a big relief. I don’t really remember any other visitors around that time (I wonder how many people I’ve just offended).

I got heaps of flowers! It was one of the only good things about being in hospital, the flowers and the phone calls. I felt very loved. I got a wonderful big arrangement from a close friend from high school and her family… we had only really just got back in touch, so it was wonderful to get a call from them right after surgery and such gorgeous flowers.

Lizzie came to visit several times. It was great to see her, she is one of the few people who realize that you feel like shit in hospital, so short visits are best (short, yet frequent!). It sounds ungrateful, but the people who came for a ‘Visit’ often stayed too long and I don’t know if they expected too much, but I always felt obligated to ‘feel better’ and make conversation – preferably happy chirpy conversation. Quite frankly, for most of my hospital stay, I just wanted to either sleep my stoned sleep, cry or at least be really grumpy without anyone getting offended.

That was one of the main things that really annoyed me about the whole cancer malarkey – the number of Visitors (with a capital V). I didn't have friends anymore... I had Visitors. Friends don’t come and hang out with you any more… instead, a whole bunch of people with guilty consciences (or pity or something equally disgusting) come to Visit. I don’t want Visitors. I just want my friends back, just want people to hang out with. Don’t fucking Visit me. I'm sorry, that sounds so ungrateful, but it always highlighted how different I felt.

It's also unfair. There were lots of people who didn’t Visit. Nik never Visited, and my chess friends certainly never Visited. We always just hung out. Amy was great… she went the wrong way and I always ended up doing things I wasn’t supposed to do… dancing in crowded smoky nightclubs right after chemo… snogging a mutual friend because he had a tongue ring and we wanted to know what it was like… skiving off study to go shopping… it was great. And Lizzie always managed to come over and see me without Visiting.

Mama was great… she certainly never Visited. She was just always there. She was there first thing in the morning, and last thing at night (very much last thing on Tuesday nights – good television). I only made her cry cause I was such a grumpy stroppy little shit once, and looking back, that’s not bad.

Pretty much the whole time I was in hospital, Dad, Beata and Mama were moving out of the Leukaemia Foundation house and into the new place. Mama in particular was getting up early, packing up my stuff, and then coming in to spend the rest of the day with me. I never saw any of the packing stuff. At the time of writing (four weeks post surgery) I still haven’t done a great deal of unpacking, which doesn’t surprise me terribly, but Mama unpacked all the essentials (with various lectures about the unnecessary amount of clothes I own!). By the time I left hospital, we had moved into the new place.

I had a couple of slight obstacles to overcome before I left hospital. Okay, so I was sick of the place. Unfortunately, I was still in lots of pain, and I was still having major lung issues – ie, they weren’t actually working to full capacity, especially the right lung. The pain issue was a problem. It was compounded by the fact that my body had developed a dependency on the pethidine (just cross-addicted from the fentanyl, I guess) and you couldn’t just yank out my drip.

Although they tried. Yanked it out in the morning, by that night we were on the phone to the doctor, trying to get authority to put the damn thing back in to stop me climbing the walls. Holy shit. Withdrawal symptoms following a narcotics addiction are BAD. I was truly climbing the walls. I had the major creepy crawlies – my skin was positively crawling, I could not keep still at all. I HAD to fidget. I just had to keep moving. I felt like I was eating myself from the inside out. It doesn’t sound so bad written down like that, but when every inch of your skin is crawling (you certainly can’t sleep), you understand why some people do some truly crazy stuff just to get their next hit. Shit, it’s bad!

So, the pethidine was put right back in. And when I say right back in, I do not mean to imply that we just found a vein and popped an iv line back in. Ha, funny. When it had been taken out, the nurse had stuffed up and taken the whole line out, rather than just the pethidine bit (leaving the saline drip). So we then got to play pincushions with my wrist trying to get another line back in. I thought I did very well through that, I didn’t say a word about the stuff up. I didn’t say very nice things about that nurse on the inside, though, I have to admit…

So, to get a line in, I pretty much demanded we use the portacath. I mean, it was there, wasn’t it? That’s why I went through hell to get the damn thing put in! Unfortunately, this did mean that someone from the oncology ward had to come down and put the damn line in, because they don’t see them very often in the chest ward. But in it went, remarkably easily, and I was back on my pethidine…

Don’t get me wrong. I wanted to come off it. I really wanted to stop being dependent on a bloody drug – a drug which basically, is just heroin. But pulling the iv line out was not the way to do it. So, we started the weaning process. Basically, I was still on a patient administered system – where I have a button, and push it whenever I want a hit. So we reduced the amount that was going in continuously no matter what, and if I needed it (for the pain! Remember, I’m still on this stuff for the pain!) I could have an extra hit.

I still got the withdrawal symptoms, but it wasn’t as bad. I used to bargain with myself – just get to 10pm, and you can have another push of the button (I won’t use the word hit). After you go to bed, you can have another push – just to help you sleep, of course. I then remember the night before it was taken out. I was down to one milliliter an hour of continuous, and ten milliliters per push by choice. I decided not to push the damn button at all that night.

Which means that I spent the entire night alternating between “Don’t push the damn button” and “Just one little push, just to make me feel better”. I didn’t push it.

The night after that I think I spent saying “I wish I had the damn button back”.

Obviously, to counter the fact that I was no longer on pethidine, we did have to switch to an alternative form of pain management. Enter new phase in my loss of independence and dignity. The drugs were great, non-addictive (hurrah!) and really helped with pain relief. Why oh why did they have to be suppositories?

Apparently they are the same drugs that footballers take post injury. They certainly worked well. There’s just a certain lack of dignity in requesting a nurse to administer that sort of drug. (No, at that stage I could not do it myself. Trust me, I learned how to as soon as humanly possible). The other problem was that they were twelve-hourly, so once in the morning and once in the evening. The evening one usually coincided with my room being full of family and friends. There is no way you can ask everyone to leave to stand outside the room, with everyone knowing exactly what was happening, so I used to just live with the pain until they all went. Pretty sucky, really. But my dignity was slightly more important to me than the pain.

As soon as the operation was over, I was slightly less stoned and the biopsy results were back, I got very flat. You’d think I’d be happy. But for the first time since it all happened, I started thinking about everything I’d gone through. Total upset of my life. Two biopsies. Uncertainty. A botched portacath insertion. Chemotherapy. An operation during which I was awake to put the cath for the stem cell harvest. Self-injection. Radiation therapy. Major surgery. Loss of friends. Loss of independence. Loss of dignity.

I couldn’t do it. I just couldn’t do it. There is no way in the world that I could get through all that. I finally asked the question ‘Why me?’ I collapsed. I cried – my God, I finally cried! There is no way I could get through the past six months. It was horrible, it was unfair, nobody understood, it SUCKED BLOODY BIG TIME! I just couldn’t do it.

Thankfully, I’d already done it. At the time, I hadn’t thought about any of the stuff that was happening… I just did it. When you need to, you just do it. So I had, I just did it. Now, though, now that it was all over, I could fall apart. So I did. (Again, when you need to, you just do it…) I cried all the time I was alone. I was miserable, I was empty. I couldn’t do it, I just wasn’t strong enough.

I started to resent everyone who said ‘The cancer’s gone, that’s wonderful! You must be so happy!’. No, I was not happy. I did not feel ‘lucky’ that it was gone. Now that it was all over everyone seemed to think that this should be a cause for celebration. I wanted acknowledgement of all the shit I’d just been through, everything I’d suffered to get to this point. Everyone else wanted to focus on the fact that it was over. Again, people can handle the good news, but come to the bad shit, they just don’t want to know. Maybe I should have focused on the good news, I don’t know. The fact was, I was just coming to terms with everything I’d just survived, and I was grieving for everything I’d lost… time, friends, innocence, and my belief that life was always going to be rosy and happy.

On the Thursday, over a week since I’d been there, I requested a chest x-ray. Now, when a doctor orders an x-ray, it happens straight away. When a lowly patient wants one, it’s a bit of a different story. The reason I wanted the x-ray was that I wanted out of that hospital. I was sick to death of the room. But, at the same time, I was still having troubles with my breathing and my lungs, and wanted to make sure that all was still well in there.

One of the problems during that stay was that Dr Tam had gone on holiday immediately after cutting me up. Fair enough, he is entitled. Goodness knows he deserves lots of holidays. The problem for me was that I was basically just another case to be shared around with his underling doctors, and since no one reads each others’ notes, it was kinda painful explaining everything from scratch with each new doctor (thus the whole ‘let’s just pull her off the pethidine, she’ll be fine’ stuff). So anyway, I needed someone to order this x-ray, then I needed someone to read the damn results. Preferably by Friday night, so I could go home for the weekend.

So, Friday late morning I finally got my x-ray. I was wheeled down to the X-Ray Clinic, where I got to sit in my wheelchair, the only person under the age of 50. That was fairly straightforward. The problem was getting someone to look at the damn results so that I could have the all-clear to go home.

Hospitals are not prisons. I could have checked myself out at any time. I was just a bit concerned that there was still congestion of an infectious kind in my lungs, something that I really need to be in hospital in order to deal with.

One of my favourite nurses was working in the ward that afternoon. By 3pm I was all packed and ready to get out of there. By seven, Scott (the nurse) was calling assorted doctors, trying to get someone to come and see me. The doctor who was supposed to be seeing me that night had been called into emergency surgery. By eight, Scott had read the xray results over the phone to another doctor, who decided he should come up and see the actual x-rays before letting me go. By nine, he’d seen them, and we were out of there…

By nine-thirty, we were eating the celebratory dinner that my stepmama had cooked… several hours ago. I was out.

A few weeks later, scans confirmed that the cancer was gone. My journey was over. I was free.

Radiation

Twenty-five sessions of radiation therapy basically translates into five weeks of treatment, one every day (with weekends off for good behaviour). It had to coincide with two sessions of chemo, which was every two weeks.

The ‘planning session’ was memorable… There ain’t no room for modesty when you have a tumour in your chest. It’s almost quite insulting having rooms full of people staring intently at your chest, and not a single person says ‘Way hey…’ Nonetheless, this is how it is… Planning lasted several hours, during which I had to lie with my head on a ‘pillow’ (made of plastic) – so my head would always be in the same position, with my arms above my head (hands in another plastic vice). This position is quite uncomfortable after a couple of minutes. After two hours? All your muscles burn.

But, to take my mind off my screaming muscles, lots of people drew lots of pretty lines in thick black felt pen all over my chest. Then they would leave and go look at scans and x-rays, have a bit of a chat, plot some more points, then come back and draw another line or two. Finally, at the end of it all, I got three tattoos… tiny little dots down my cleavage. I did ask for a dragon, but he said he was insufficiently trained…

They then took a photo of my boobs with all their artwork (worth millions one day, I’m sure) and then a pretty face shot so they know who’s boobs go with who, and that was planning.

Radiation itself never lasted long… usually only about fifteen minutes. Up to an hour in the waiting room (nothing new there), then I would be called in, take my shirt off, lie topless in the vice with my arms up, then the radiation people would draw lines from the tattoos. Once I was perfectly lined up, they would hit a big siren, leave the room, closing the big heavy lead lined doors behind them, and go and oversee the proceedings from another (safer) room.

The radiation machine sort of rotated around me, making a whirring noise. It doesn’t hurt, you can’t see anything, and it was all fairly uneventful. The knowledge that you are being blasted with radiation is pretty scary though.

By the end of the month I had fairly major sunburn to the treated areas, but that was the only real side effect… so far. I was extraordinarily tired, and sleeping every afternoon, but nothing dramatically different from chemo.

During radiation, Mama went home to spend some time with Dave. Grandma and Grandpa came down to look after me, and cook lots of nice food. It was really good to have them there.

Since they are big fans of their food (yes, it is genetic), they left at just the right time… they agree that they would have struggled with what followed.

Unfortunately, when you radiate to the chest, you cannot ONLY radiate the tumour and miss all the other bits. This means, that if I make it to 70 or 80, I will probably die of heart disease. So be it. I can live with this.

Radiation keeps working even after you stop blasting every day. About a week after I finished treatment, I started getting really bad heartburn, which just kept getting worse until I could no longer swallow anything without immense pain.

The lining of my oesophogus had completely burned off. This is known as oesophogitis, and it was the first time I was really incapacitated by my poxy cancer. The inability to eat was completely foreign to me.

Amy came to stay with me for a week and we had a completely mad time. We went off to nightclubs when we shouldn't, and it was about this time that we also started the Cabbage Soup Diet. Hey, I wasn't eating ANYTHING, so it might as well be cabbage soup that I'm not eating. Unfortunately, we burned the soup and the entire house smelt like cabbage for a week. Needless to say, the diet lasted about 24 hours - disgusting stuff.

Amy and I also spent the week touring tattoo parlours and looking for a tattoo artist who could design a tattoo that we liked. We found one, got a great design and in we went... And yes, it does hurt, but I figured I was getting needles stuck into me willy nilly anyway, so what was a couple more...

During this time, Amy turned 21. On the morning of her birthday she started crying, saying she didn't want to lose me. This was the first time it had really hit me how hard it would be for everyone left behind if I died. I knew that it was a possibility and although I didn't particularly want to die (okay, REALLY didn't want to die), I was still quite calm about it. I realised that day that it would really devastate my loved ones, and I became more determined not to die.

After radiation had finished but before the surgery was scheduled, Mama and I spent a week in Nimbin. I loved Nimbin. The northen NSW hinterlands are really beautiful, and it was a great place to spend a week. Nimbin is a very small place, and after a couple of days the locals got used to seeing us around and would say hello (and no longer tried to sell us pot). So we had a wonderful week wandering around the town and driving around the area.

Chemotherapy

“I have cancer”. There is no easy way to say that, and no matter how many times you say it, at first, it doesn’t seem real. In fact, the first time I did manage to say it was a very big moment for me. ‘I have cancer. There, I said it’. ‘I have cancer’. So, obviously, when the tough get cancer, the tough go to the beach.

Diagnosis was on a Thursday night. The next day, Dr Morton, the Haemato-Oncologist, came to visit me for a little chat. He said that Dr Tam had changed his mind about operating the next week (thank merciful goodness… four days is not enough time to mentally prepare for such a huge operation!), but the downside of that was the reason why he had changed his mind. The tumour was wrapped around arteries and other important bits, and would need to be shrunk before it could be cut out. This meant chemo.

So, instead of surgery the following Tuesday, I would start chemotherapy.

What on earth is chemotherapy? Most people don’t know, and it’s kind of like a big bogeyman. It’s what you have when you have cancer, and it makes your hair fall out. That was basically the extent of my knowledge, and there were many people in my extended circle who never got past their misconceptions and fears of chemo. I learnt the hard way (and very quickly) what it was all about.

Chemotherapy is basically just the intravenous (or sometimes oral, or injected into the spinal chord – in my case, intravenous) infusion of certain drugs which kill off all fast-growing cells. Fast growing cells include mouth cells, stomach cells, cells in the reproductive system, hair cells, and one more… oh, that’s right, cancer cells.

My main problem with the whole chemo thing was not the hair thing, once I got used to that idea, but the fertility thing. With most chemotherapy regimes, there is a strong chance that the reproductive cells will be destroyed also, leading to possible infertility. I was nineteen at the time, and had a vague idea that sometime I would like to have children. Suddenly I was being told that there was a chance I might not be able to have children, and the only thing I wanted out of life was babies. I guess that’s human nature.

I enquired about harvesting and freezing eggs. Dr Morton told me, in his usual blunt manner, that we didn’t have time. Harvesting eggs is not like harvesting sperm. To collect sperm to freeze for later is a quick flick of the wrist, whereas eggs require daily injections for awhile to produce more than one (which is standard per month for women, in case you were unaware…) and then surgery to get the damn things out. So, no time, no harvest. Bugger.

The other problem was that my chemo regime was one that was usually given to old men with lung cancer, whose first question is usually not “Can I still have kids after this?” So really, no one knew whether or not this chemo would make me infertile or not.

I spent a long time thinking about this whole issue, and had to eventually come to terms with it in some form or another. I am NOT reconciled to the thought that I might not have children someday. I WILL be a mama, one way or another. At this stage, I am very optimistic that I will be able to conceive naturally, mostly because my periods didn’t stop during chemo, so hopefully my reproductive system wasn’t too badly affected (hopefully it wasn’t affected at all). If not, I would like to adopt, probably from Thailand. However, all of this is quite a way into the future, since I can’t actually attempt to have children for five years after chemo (oh, and I need one of those male things to play a slight role somewhere along the line). I hope these issues will resolve themselves in the fullness of time.

So yes, I had cancer, and yes, I would have to start chemo. But I had an entire weekend before I had to deal with any of that, so we went to the Gold Coast. It was a great weekend, lots of time on the beach, by the pool, eating good food, hanging out in the hotel and generally not thinking about cancer in any way, shape or form. Just call me Cleopatra, Queen of Denial. It was good. Denial is good.

Unfortunately, denial doesn’t last forever. Unfortunately for me, my denial period came to an end when someone wanted to stick poisonous substances in me. Basically, I got into HOCA (Haematology and Oncology Clinics of Australia) and freaked out. I did NOT want to be there. I did NOT want cancer. I did not want a needle in my arm to start putting chemo drugs in. Unfortunately, neither did my body. It took four attempts to put an intravenous line in before one of my veins responded and allowed the needle in. I have shocking veins to start with, and when there’s as much adrenaline running through me as there was that day (I was angry, damn it! I did NOT want cancer! I wanted to GO HOME!) they all retreated even further.

Finally, they gave me some valium (!!!) to calm me down, and we managed to get a line in. After that shocking experience (how many veins can I possibly stick a needle into), I decided I wanted a Porta Cath. A portacath is a silicone button (for lack of a better word) with tubes attached, which is inserted into the chest, which the tubes inside the artery leading to the heart. With a catheter, it is possible to stick a needle into the chest, directly accessing the portacath, creating a quick and easy way of creating an intravenous line in. After four attempts on that first day, it sounded bloody good to me…

Unfortunately, it creates a big fat scar, it hurts like buggery for the first couple of weeks while the muscles in your chest get used to the intrusion, and during the insertion, my anaesthetic failed.

What a good idea the cath turned out to be. Not.

So, the next day, after much reshuffling, I was booked in for a portacath insertion. For some reason, known only to others, this is done in x-ray, without an anaesthetist. I was given more Medazzlum, but I didn’t enjoy it anywhere near as much as I had during the bone marrow biopsy. For a start, I woke up. I was NOT supposed to wake up. I was certainly not supposed to be aware of the fact that someone had their hands inside my chest. It’s times like this you revert back to childhood thoughts and speech patterns: “But you promised I’d be asleep!” “I’m awaaaa-aaake!” “Hello??? You know I’m awake, right?” No one would talk to me – what on earth do you say to someone who’s awake while you have your hands in their chest? – and apparently it was very traumatic for everyone else involved as well. Forgive me if I don’t have a huge amount of sympathy for them… I think being the one lying down is worse than being the one standing around. To be fair, one of the nurses received a needlestick injury from me, so there must have been some sort of unusual activity during the procedure!

I spent the rest of that day receiving stupid chemo drugs, and then I spent that night in the Mater Private Hospital. Interestingly, the beds at the Mater aren’t electric, so regardless of the fact that I had a brand new thingy in my chest and all the surrounding muscles were very sore, I still had to pull myself up!

Chemo was basically three days worth every three weeks. The main and immediate side effect was the nausea. I very rarely actually vomited, because I was given lots of drugs to control the nausea, but my goodness, did I feel sick. And I continued to do so for about a week after every round of chemo.

After chemo (and I know I say ‘chemo’ like it’s an event, but basically it’s just a couple of hours each day for three days attached to a drip) I would completely go off my food. Completely. I say that as if it’s a big deal, and anyone who knows me knows it is. I love(d?) my food. Food was an integral part of my life. For quite a while I think I was actually addicted to Mars bars, given that I couldn’t get through a day without one (or two). And let’s not get into the chips issue. But straight after chemo, I just had no interest.

After my first round of chemotherapy, I ate nothing but tinned spaghetti. It was all I fancied. After the second round of chemo, the thought of tinned spaghetti was disgusting, and all I wanted was buttered toast. After the third round of chemo, both tinned spaghetti and buttered toast were horrific thoughts. I can’t remember what I ate after that round. Mama would buy all sorts of exotic and interesting foods that normally I would devour instantly to try and tempt me into eating a bit better, but to no avail. My relationship with food just went haywire.

Thankfully, this disinterest usually only lasted about a week after each round of chemo. It was a sign that I was improving when I would eat normally again. I also went off alcohol for about a week, and when I was ready for a glass of wine with dinner again was the sign that I was pretty much over that last round of chemo. In fact, my grandfather used to call to ask not how I was, but whether or not I had had a glass of wine yet. If I had, then I was pretty much better…

Speaking of my grandfather, we had never been terribly close. He is not a terribly affectionate man, but I guess I always knew he would be there. When I got cancer, he started calling all the time, and wanted to DO something. So he and Grandma came down to help support mama, and ended up doing lots of cooking and cleaning (since Grandma absolutely cannot sit still without doing something. The first time they came down was while we were moving out of my Shoebox into the Leukaemia Foundation house. I say we, but in reality, I spent lots of time in bed sleeping while they packed up my stuff, moved it, and then cleaned the Shoebox (till it absolutely shone).

It was great to have them there… I had no energy and no interest in moving, and it was far too much work for Mama. This way, Mama had lots of support as well, and you’re never too old to need your parents… Plus, it was nice to know that just because they are not demonstrative, does not mean that they don’t love me lots and lots…

While Grandma and Grandpa were here, the Leukaemia Foundation held their World’s Greatest Shave for a Cure. I went down to the shopping centre and watched all these people shaving their heads. I had been tempted for a little while to take matters into my own hands and get rid of my hair, rather than waiting around for it to fall out, and while down at the Shave I just went for it – down to a number one. I could not sit around waiting for my hair to fall out. I needed to be in control of that, and this way, it came off when I said so, not when various drugs decided to impact.

I actually kinda liked the look at first – it was short, it was funky, it was bloody easy to look after. Trust me, I got over it.

Second biopsy

For some reason I don’t remember much about the second biopsy – the memories are not as clear as the first biopsy. Maybe it’s because it all started to blur together, too much of the same old same old – who would have thought, that such a major life experience as an operation, could become blurred because you’ve done it before?! I think most of it went along the same lines as the first, except that I went in the night before the operation, and so avoided all that waiting around in the Day Surgery.

Actually, it was quite irritating – we had cut our trip to Mackay short because I needed this second biopsy, and yet when we returned to Brisbane, I still hadn’t been booked into hospital. We spent over a week kicking our heels waiting for the letter from the hospital, telling me when I should be going in.

Nonetheless, I went into hospital the day before the operation, and had all the little ‘chats’ – with the anaesthetist, and my dear friend Dr Huang, the night before. It was very bizarre, the evening before, I had this urge for chocolate (me? Chocolate? Never…) and because I was not attached to any machines or anything really – I wasn’t even in pyjamas! – there didn’t seem to be any reason why I couldn’t go walkabout and look for a vending machine. I felt kind of like an escapee, wandering the halls of a practically deserted hospital at night, looking for a vending machine. By the time I actually found it (you know, past the operating theatres, down the lift to the ground floor, around through the old part of the hospital, past the work on the new part, down several long and deserted hallways, hidden behind a stair case – the usual rabbit warren that is Greenslopes Private Hospital) I was ridiculously pissed off because there were no longer any bloody Mars Bars!

Anyway, I took my sleeping pills like a good little girl the night before, and then again the next morning, scrubbed up, and went into theatre that afternoon. The ‘siding’ – the place where everyone awaiting theatre waits, all scrubbed and prepared, I have always found to be kind of difficult. The only way I can keep completely calm and detached (which probably isn’t a good thing, since I don’t actually deal with any emotions which may arise) is to read, and I can no longer take books into the siding. I’ve always asked the nurses on duty there for a magazine, and there always seems to be something trashy lying around… I have read more trashy magazines since I got sick than ever before in my life! It keeps my mind occupied, but not on anything taxing.

The main difference between my two biopsies was that I didn’t go to intensive care after the second time. I don’t think this was a good thing, because it took me much longer to recover because I tried to do too much too soon, but the reason I didn’t go in was entirely my fault and a typically Jessie thing to do to boot.

Following this operation, mama was nowhere to be found (not her fault, I was in ‘recovery’ – or the siding for post surgery people!). I woke up slightly earlier than usual, and demanded that someone come to hold my hand. As luck would have it, there was a rather dishy male nurse working at the time, and he held my hand and sat beside me for about half an hour. I made a considerable effort to wake up and be slightly more perky than unconscious, and APPARENTLY (I can’t really deny it, since it’s in my nature, like breathing and Mars Bars) I was flirting and so they assumed I was well enough to not need to go into ICU.

It took a lot longer this time for my lung to repair itself, and I was a lot weaker. On the plus side, I was no longer so anxious about the tube thing, so I demanded it be taken out pretty much the day after the operation, so my pain levels (excluding breathing difficulties) were a fair bit lower. I was in for about a week this time, and the hardest part was the waiting for the biopsy results. We didn’t want a debacle like the last one, with no results, so I did a fair bit of nagging for the outcome.

Unfortunately Dr Tam (and thus his registrar, Dr Huang) is a chest surgeon, and is used to dealing with dicky hearts and other chest problems, not obscure cancerous tumours. So I suppose it is understandable that they couldn’t answer my questions about what the hell is this thing in my chest, and what the hell are you going to do about it. Understandable on a rational level, perhaps, but when you’re lying around in a hospital with no idea what’s wrong with you, it’s not so good.

I think the crunch came when I had been told for the third time that the biopsy results were still not through and that they STILL did not know what was happening. I was still attached to the pethidine PCA and it kept malfunctioning and beeping. I was very fed up after this last unproductive visit to tell me that we had no idea, so we went down to the coffee shop (me in a wheelchair) to get away from it all.

Away from the ward, mama turned her mobile phone on and when it started madly beeping, she went outside to listen to her messages. At which point my machine started beeping like mad, and I found myself stranded in a corridor, making a huge amount of noise, and unable to do anything about it. A nurse wandered by, but informed me that she was not allowed to touch my PCA machine – insufficiently qualified. Finally someone came along who was prepared to wheel me back to my ward, which she did – and then left me in the corridor in the ward, still making noise, still basically stranded!

And then Dr Huang came along… what timing. I am seriously PISSED off, and looking for someone to take it out on (it’s a fault of mine, I admit it). And here’s Dr Huang, perfect scapegoat, hasn’t been able to tell me what I want to know, and he just happens to rock up at the wrong time… So I had a bit of a tirade at him, cried, got VERY stroppy, put forward my perspective very forcefully, told him that he was NOT helping me, and amazingly, he just stood there and listened to me. I bet the old men with dicky tickers don’t yell at him very often.

Finally, someone took me back to my room. This little tirade of mine was probably very healthy, given that it was an expression of something vaguely resembling emotion, and not the detached, rather black humour I had been using to get through it all. Given that I am such an emotionally driven person (just ask Rich), it was very strange for me to be so emotionally detached from all that was happening.

The other positive outcome of my little tirade is that Dr Huang went to go find the oncologist’s registrar to come and talk to me. (Oncologists are the cancer dudes – I mean cancer doctors.) He went through everything with me, and that evening the biopsy results came through.

Once again came the evidence that Dr Tam and Dr Huang are used to dealing with a) old men who don’t argue back as much as young stroppy women and b) unconscious people. As I’ve pretty much said all along, Dr Tam and I get along much better when I’m unconscious! Dr Tam wandered in during his rounds and basically said “We’ve got the biopsy results. It’s not a lymphoma like we thought, but the cells are basically neuroendocrine carcinomas, which are definitely cancerous. This means that next Tuesday (it was a Thursday) you’ll come back, I’ll cut you from collarbone to navel, saw through the breastbone, jack open the ribs, and cut out as much as I can”. Unsurprisingly, I crumpled into tears.

From Hodgkins lymphoma, with it’s 80-90% chance of survival, to this obscure cancer – basically, a thymic neuroendocrine carcinoma is small-cell lung cancer, but not in the lungs, it’s in the thymus gland. The thymus gland – which is different to the thyroid! – as far as I can tell, controls the stem cells and tells them what to do and what to become in order to fight infection. As I expressed it in an early email,
“I don't have Hodgkins Disease, or even a lymphoma. This is bad, because I'd dealt with the whole lymphoma thing, and the prognosis was so good (90% survival). Instead, I have a thymic neuro-endocrine carcinoma. :-) It's okay, I had absolutely no idea either. Basically, the tumour is in my thymus gland, which is like the instructor of the immune system, telling cells what anti-bodies they need to become in order to fight diseases. So, it's a thymoma. However, the cells in the tumour are neuro-endocrine carcinomas - usually found in little old men with lung cancer. Basically, I am a medical freak. What I have is very unusual - it really should not be there. Unfortunately, it is, and because no one has ever had it before (there may be one or two other weirdos out there, but there are VERY FEW), there is no known treatment. Thus, I cannot say that there is an 80% survival rate, or any prognosis at all, because the experts don't know what it is, any my treatment is largely experimental.”

Basically, that’s the medical stuff insofar as I’m going to go into it. There is a lot of information out there about what is cancer, but that’s not what I’m trying to write about. I would prefer to leave it as a rare cancer that doesn’t fit into any boxes, and talk about the stuff that from my point of view, are more important. After all, I have four doctors to look after all the medical stuff!

So, it was official – I had cancer.

Between biopsies

During most of February, we still had no idea what the hell was wrong with me. The word ‘cancer’ was continuously hanging over my head, and all we knew was that something very serious was wrong, but we had no idea what. Mama didn’t know whether she would need to take time off work, and if so, how much, I didn’t know whether to enrol in uni for the coming semester or not (I had already dropped out of my summer semester subject, which had pissed me off quite a bit – I had just finished all the lectures and the groundwork, all I had left was the assessment – but I had no room mentally to digest the strategy behind Virgin Blue, let alone study for a Business Policy and Strategy exam…) and quite frankly we were just marking time until we knew what the hell was going on. A few weeks ago I had booked a trip up to Mackay, to mark the end of my summer semester and to get away for a week or two before starting the next semester, and also because Virgin was having a sale and I got a ticket home for $66 each way.

Just before I left, I found out that the first biopsy had been unsuccessful. By unsuccessful I don’t mean that they hadn’t been able to do it (I can tell you, they cut me open and went in all right!) but that the cells had been crushed on the way out and they couldn’t tell properly what type of cells they were. We would have to do it again, through the front of the chest this time. Why we didn’t just do it that way the first time I’m not sure – it would have been one incision instead of three, but I guess it would also be a bit more disfiguring for me, and there was the chance that the first one would have worked easily.

So, I was back in Mackay… for the Valentine’s Day weekend of all things. I had had to change my flights, because I could no longer stay the ten days that I had originally planned – we had to return to Brisbane to do yet another biopsy. Mama and Dave needed to take my brother to Townsville so that he could start uni. Poor Ben, here was a huge change in his life, he was about to move out and start uni, and yet his stupid sister had just got a tumour that gave her all the attention. Basically, Mama and I flew up to Mackay on the Thursday, Mama, Dave and Ben drove up to Townsville on the Friday, settled Ben in, and Mama and Dave drove back on the Sunday, ready for Mama and I to fly back to Brisbane on the Monday.

I caught up with an old boyfriend over the weekend, and realised that my life really had changed. My life had become so weird, and everything had been put on hold, so that everything had become all about cancer - it was impossible to pretend it wasn't there and relate to people the same way I had before all this started.

The first biopsy

I had a great weekend with Mama and Dave… I am extraordinarily lucky to be so close to my mama, and I missed her dreadfully while I was in Brisbane. So to me, it was all one big suspended reality holiday with my parents… I got to see them, and spend some time with them… the fact that this was all because I was potentially very sick was irrelevant. I just didn’t think about that.

But Tuesday was inevitably going to come around, and it did, and we toddled off to see Dr Tam. We had a list of questions, and I think we expected to get a lot of answers. We took along my two scans (two! How this was to change – eventually we were considering buying an art folio to tote all the scans around….) and went to Dr Tam’s rooms at Greenslopes Private Hospital to hopefully get our answers. Dr Tam, naturally, had no answers. How could he? What he did say is that we would need to go in and get a bit of it before we could know anything about it. He couldn’t even tell us what it could be – mostly because it ‘could’ be almost anything. Thus, I became reconciled to the concept that yes, I would need to be cut open.

There were two options of how we could biopsy this tumour. One involved a cut straight into the chest, above my right breast, but it was the other one, which Dr Tam favoured, that we went ahead with. The biopsy would involve three cuts – one under my right arm, one on my right shoulder blade, and one, for reasons still unknown to me, on my back, about half-way between the others (hello?? Tumour in chest!). Basically, a bit of a distance from where the damn tumour was, but hey, he was the doctor, and what did I know anyway. He told me the main risk was that the cells of the tumour would be crushed on the way out during the biopsy, and that we would have to do it again, the other way. So, I went into hospital, telling few but those fairly close to me and whom I saw quite a bit anyway, but not wanting to tell too many people until I knew what the hell the damn thing was.

I think I handled the first biopsy fairly well. My last operation involving a general anaesthetic was when I was about seven, and broke my arm, needing it to be reset. I can tell you right now, there is a big difference between being operated on as a scared seven-year old and a supposedly big brave nineteen-year old! My main memory of the biopsy itself was spending the entire day sitting in the Day Surgery section of Greenslopes Private Hospital, a large chunk of which I was dressed in the oh so trendy gowny thing, waiting for someone to come and talk about the operation, and then to bloody do it. This day was my first meeting with Dr Huang, Dr Tam’s rather young registrar. I am sure he is a very nice man, and he is obviously good at what he does, but it is also obvious that he is used to dealing with much more cooperative older patients (being a registrar to a cardio-thoracic surgeon and all). Being confronted with a young person, who queried everything he said, seemed to be a bit of a challenge for him… but at this stage of our relationship, things were comparatively very smooth! I also remember being wheeled into the operating theatre, and basically being treated like a piece of meat, or someone who was already unconscious. Instead of asking me to move from my bed to the operating table, they put a board underneath me, wrapped me up in my sheets and hoisted me across. Finally, there were people all around me, scrubbing up, writing up my details on the whiteboard (which caused me some concern, given that someone else’s details were left up for quite a while) and generally acting as if I wasn’t there. People pulled at my arms, putting them into place and then putting needles into them in various places, without explaining what was happening or addressing me at all. Finally, I gave in trying to watch what was happening, and shut my eyes, waiting for oblivion to befall me. (It did.)

I then remember waking up as I was being wheeled somewhere (presumably to intensive care) and sailing past mama, who looked very worried as I was whisked off past her in my bed on wheels. It felt like something from a hospital soapie/sitcom – very dramatic. My recollection of intensive care is very fuzzy, mostly due to the anaesthetic drugs making their way out of my system, and the painkilling drugs (pethidine) making its way into my system. I really enjoyed the push button PCA pain killer delivery system – ie every time I wanted some more pain relief, I pushed the button and it was delivered intravenously into my system, and I have a vague recollection of the night nurse – mostly of our discussion of the state of her marriage and of men in general. I felt very coherent at the time, but the fact that I can no longer remember the details of that conversation or that night tell a different story… I do know that I didn’t sleep much.

Mama came back the next morning. Every time I have been to intensive care it has been fairly surreal, again, due to all the drugs, I presume. My main recollection of that next morning was the damn toilet issue. I cannot, cannot, CANNOT, pee into a bedpan. No matter how many frigging taps are running in the room. It will not happen. Nope. Especially not with people entering the room every couple of minutes to see ‘how I’m going’. It is not going to happen. Threaten me with the catheter, I don’t care. My bladder will NOT see that a bedpan is a valid receptacle.

This was probably a blessing in disguise, because it meant I had to get up. Unfortunately, by the time I decided it was REALLY time to get up, my nurse was with someone else, and couldn’t come and detach me from the squillions of machines I was hooked up to. In the end, it took about half an hour to remove all my connections to the ECG stuff, the blood pressure machine, the pulse and oxygen thingys, the damn drainage tube poking out of my ribs, and then of course I couldn’t actually walk alone (something I’m glad I didn’t realise before I tried! It’s amazing what you can do just because you don’t know that you’re not supposed to be able to!) so I was put onto this walker thing, toted all the machines that had to come with me, and it only took about another half-hour to get to the bathroom on the other side of ICU!

Thus began my first experience of lack of privacy – sharing intimate functions with a total stranger! (At least back then I didn’t know just to what extent it would go…) But I finally got to pee, and then had a shower (introduction to shower while seated, attached to machines, and dependent on a washer and a nurse), and then began the trek back to my bed.

Back up in the ward, it was interesting being a young female in a cardio-thoracic chest ward in a veteran’s hospital… Most of the other patients were elderly men with heart problems. On the plus side, it meant I got a private room to myself, partly because I was a private patient, and partly because who the hell would I share with? There was a fairly steady stream of old men shuffling past my door during my stay… I later realised that instead of wasting all that time in bed, I should have been up and about exploiting my golden opportunity! Where else would I find so many old men with heart problems? The only catch was I would have needed to find a rich one…

The other memory is of getting my tube taken out of side. In case you’re wondering (tube, what tube? Honestly, who has a tube?), after an operation like that, you always have a tube to drain away all the fluid that collects in the lymphatic system, and mine usually came out from between my ribs… ow! So although I knew rationally that I would hurt less when the tube came out, I still had to get over the mental block of ‘someone is going to pull a tube out of my chest… yuck, how weird, and I wonder if there will be a sense of air going in or out?’ When it happened, it was pretty much as imagined… it felt exactly as if someone was pulling a tube from out of my chest, but it didn’t actually hurt… it was just weird.

The other thing that was going on that I had to get over was the fact that one of my lungs had to be collapsed during the operation. Trying to reinflate a lung using little more than deep breathing is pretty exhausting and a lot of hard work, not to mention bloody painful. I can tell you right now, you get pretty sick of people telling you “Just breathe deeply, just breathe deeply”. You bloody breathe deeply when each inhalation feels like you’re trying to blow up a balloon on the inside simply by sucking air in! (Oh wait, that’s what you are doing…)

All throughout this stay in hospital was the question of my hair. What on earth should I do with my bloody hair? Long, thick hair does not go well with a hospital stay, but cutting it was like giving in to the possibility that this stupid tumour might be cancerous and I might lose my hair through chemo. So during this stay, Mama braided my hair every morning and every night, usually off to one side so that I could sleep on my back. Such style.

I have a vague recollection of visitors. I know that there were quite a few, including a friend from high school who took taxis each way across town just to see me, but unfortunately, I was too stoned at the time to really remember these visits. I talked a lot of nonsense as well, going on about a ‘war on Woolworths’ and asking my next door neighbour how her massage was. I would really love to know what was going on in my head during this time… but I can’t remember! Once again, while I was fairly coherent (with some exceptions, the bloody war on Woolies being the main one!) during these visits, it all fades into stoned fuzzy recollections afterwards.

I also remember dropping off the sleep fairly regularly – just another effect of the pethidine. During this stay in hospital, Dave had to return to Mackay to work, and Mama’s (and my) friend Kate had come up from Canberra to give Mama some support (I was in no position to offer support). So when I did finally get out of hospital, we had lots of fun… going down to Southbank and eating prawns straight from the shell, one of my favourite pastimes, and going to the markets. Again, it’s amazing how much fun you have when you just don’t think about what’s going on. I still had no real emotional reaction to all that was happening to me.

Finding it

At the end of the depression consultation, I asked quickly if he could renew my contraceptive prescription, something most doctors just do without a second thought (in my experience anyway). This one, regardless of the fact that I had already been in his office for over twenty minutes, took the time to take my blood pressure (high – maybe because I had just finished an emotional time confessing I was depressed?) and listen to my heart, and at this point probably comes the turning point of my life. I have a slight heart murmur – it’s barely noticeable. Most doctors don’t notice it. In fact, the last doctor to notice it was the last one to diagnose me with depression back in 2000. Back then, I had an echocardiogram, had it all checked out, and it was fine, no dramas. So when this GP decided that I couldn’t have my pill prescription until he had checked it all out, I must admit I was a bit irritated. This stupid murmur had been checked out three years ago, it was fine then, what was the production about this time. Thankfully, he ignored me, and ordered another echocardiogram… and a chest x-ray.

So, I toddled along to the x-ray place, still a little put out, and had my chest x-ray (the echo was booked for the week after), and was told that it would take about an hour before I could pick up the actual x-ray results. So I went to the movies (alone) to go see Chicago. I enjoyed the film – not as much as the theatre production, but it was well done. I turned my mobile phone back on after the film and listened to my voice messages. One was from the x-ray place saying that there had been a problem, and could I come back and do the x-ray again? I assumed that this meant that something had gone wrong with my x-ray, that the films hadn’t turned out or something, so I returned quite unconcernedly. Once I got there, I was told they wanted to do a CT scan. I didn’t really think about this… didn’t ask why, was something wrong, just really went along with the flow. (Although I was a little put out because a CT scan involves an injection of dye… little did I know how well I would become accustomed to injections!)

I think I had a good book with me, because I was quite happy sitting in the waiting room waiting for all the results to be ready. I had an appointment at the GP’s that afternoon to discuss the x-ray (and now I guess the CT scan), and it looked like I was going to be late. I asked the x-ray staff to give the doctor’s surgery a call, which they did, and then the radiologist called me in.

He told me that it was very important that I go and see my GP that afternoon, no matter how late it all was. He said he had called my GP, who was expecting me. I could tell that something was serious, and that he was trying to work out whether or not he should tell me what was wrong, and in the end, he decided it was more important that I realise how serious this all was, rather than waiting for the ‘proper’ person (ie my GP who had ordered the tests) to tell me.

He said that they had found a large ‘mass’ in my chest. Not growing on anything, just in my chest. He said it was most likely benign, probably benign, every chance that it was benign, but that it still had to be checked out. They say ignorance is bliss, and not understanding that ‘mass’ meant tumour (or that ‘tumour’ often meant cancer) or that benign was really the opposite of cancerous, meant that I accepted all of this fairly calmly.

I went back to the GP, and it was obvious that he wasn’t really sure how to tell me what he had to tell me. I think I made it a bit easier (for him at least) and said “Don’t worry, the radiologist already told me about the mass”. Which made it easier for him, but was a bit of a shock for me when he started using the term tumour fairly liberally. It suddenly hit me that hey, this was serious. To be honest, my first thought was one entirely based on vanity. I had (have?) great breasts and a great décolletage, and in true Jessie-style, I showed it off quite a bit. To suddenly realise that this stupid mass or tumour or whatever the hell it was would need to be gotten rid of meant that I would probably wind up with a scar on my chest. How annoying is annoying! A scar on my great chest! What a calamity! Such a vain person I am (was? nah, probably still am…) It started getting serious very quickly when he told me to call my mother and that yes, she should probably come down to Brisbane. He made some calls to find a cardio-thoracic surgeon, and made me an appointment with a Dr Robert Tam for the following Tuesday (it was currently a Thursday). Mama was shocked at the news, and she and Dave (my stepdad, her husband) said they would be there as soon as possible.

To be honest, I think I was in shock. I had no real idea what was going on, certainly didn’t understand that there was a real possibility that this thing was cancerous, and I definitely had no idea what was ahead of me (thank goodness, I think). I had a usual Thursday night commitment, to play chess with a group of people, who I wasn’t that close to at the time, but who have come to be really good friends. I went. I told them reasonably unconcernedly (a bit uncertainly, but fairly matter-of-factly) that they had found a tumour, and it’s Regina’s reaction that I remember most. She just looked at me, and said “How are you dealing with it? You just seem to be taking it so calmly.” I think it was then I realised quite how serious this could become.

I spent a lot of that night looking at my hair. I had lovely long thick hair, and about the only thing I knew about cancer is that chemotherapy makes you lose your hair. So, again, my whole focus was on the vanity thing – I was maybe going to lose my super chest and now maybe my hair. I don’t think I was prepared or emotionally equipped to start thinking that there was also this whole potential death thing – but then again, I couldn’t say the word cancer, not in my head, and certainly not aloud.

Life Before

I thought it was a quite a good life before it all started… I had just moved into my own place. Independence at last! It was good, I had everything just the way I wanted it, and was finally muting my pink bathroom into a pink and blue one… much more subtle. It was January, I had just come back from spending Christmas and New Year in Mackay, and was getting ready for my final year of university. It was going to be a big year – I was going to cram in ten subjects to finish my Bachelor of Business Management – specialising in International Business – and my Bachelor of Arts, majoring in French and International Relations. Then it was on to the big bad corporate world, make lots of money, travel a lot, live the high life. I had just finished a five subject semester, with a grade point average of 6.25 (my best ever). All of this was made even more impressive (toot toot goes my horn) by the fact that I had been working two jobs as well. Your usual busy busy stressed little overachiever.

Happy? Kinda. I thought I should be, anyway. I had the things I wanted, independence (at the cost of all my free time trying to keep my head financially above water, but still… I had it!), my own place, a plan to finish uni and begin working, ambition, go-go, results, achievement. Unfortunately, along with all this was a huge amount of loneliness – that I relatively successfully told myself that I didn’t really have. The closest thing I had to a best friend, Hayley, was always an on-again off-again sort of relationship, and my good friend Jacqui, who was, in retrospect, a far better and more reliable friend, was about to head off to France for six months on exchange – a trip she had been saving for for ages and truly deserved.

I was sad? no, not sad, just a little selfishly anxious about Jacqui leaving, and for some obscure reason that I have never found out, Hayley decided she no longer wanted to talk to me or see me after I returned from my Christmas break from Mackay, and I had decided not to pursue it.

At around this time I also caught up with my ex-boyfriend, Richard, before he went to America for a year for work.

Talking with him the way it always had been reinforced the fact that I had no ‘best friend’ any more – no one to tell absolutely everything, work off all the stuff that was in my mind and bothering me, no one to laugh and cry with. And suddenly, here was the person I had shared so much with, who knew me so well, whom I knew so well, and we were talking like we’d never been apart, and I realised that there was something fairly major missing in my life. The important part of life, the relationships, the friendships and the sharing and caring just weren't there.

I was creating the lifestyle I thought I should have, but it wasn’t enough. It was empty and it was lonely – very lonely.

I have a history of depression. I am usually a very happy sort of person, no one would call me a ‘depressed’ kind of person, but I have suffered from depression. My choice of words there is deliberate – I firmly believe that depression is an illness and not a ‘state of mind’ that you can just ‘snap out of’ or ‘think positive’! So after two weeks of familiar symptoms – continuous bursting into tears at the slightest thing, lack of desire to get out of bed, no motivation, lack of caring about what was going on, no motivation to study, cook, or clean – I knew that I was back in the land of depression. I went to the doctor (a new GP, one I had never seen before), and he diagnosed reactive depression – reactive meaning that I was reacting to seeing Rich, the fact that Jacqui was leaving, the fact that Hayley was doing goodness knows what, the fact that I live alone and my parents and family are so far away. It almost felt like a failure – I couldn’t do it alone, I needed anti-depressants to get through it.

Would that that was all he diagnosed…

I don’t imagine that it’s easy for a GP to come across a new patient who is depressed, and then find out that you now have to tell her that she has cancer as well… but I’m getting ahead of myself.