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.