I'm free!

Well, it's been a while since I've last posted, and most of you know why. Far be it from me to do something simply.

I went into the hospital on Wednesday. I'd convinced Rich to not go to Dubbo, and I'm really glad I did. I just really wanted him to be there - just in case. Just in case what, I'm not sure, I just know that I really wanted him to be there.

So we went in bright and early on Wednesday morning, checked in at 7am, and then began the sitting around in the waiting room game. I went in at about eight, and that was me out for a couple of hours. I woke up at about two (expecting it to be about nine, since it was only a half-hour procedure) and in a lot of pain.

My surgeon (gyno-oncologist) sent in the camera, and could see pretty quickly that it was cancerous. The tumour was in my right ovary and was quite self contained. It was a fairly simple procedure to take it out, but surgeons can't do anything like that without a patient's consent. Since I was comatose, it was time to make some calls...

Rich had gone to the park to wait while I was under. Dr B called him, explained what she wanted to do and pretty much demanded (not asked) permission. There really wasn't much choice. Rich panicked a little, and said that they should really talk to my mama. So Mama was rung (instant heart attack material - telephone call on the mobile from your daughter's surgeon), and she agreed to the procedure. Basically, if we didn't do the procedure then, we would have done it in about four weeks anyway and I would have had to go through the whole thing again, only it would have had time to grow in the interim. So it was all systems go.

Dr B cut me from navel to pubic bone (quite neatly) and went in and removed all the tumour. She took out all that was visible, and then took biopsies from the left ovary, uterus, liver, and probably a whole bunch of other things. She then sewed me up quite neatly and I began the waking up process.

And boy, was it unpleasant. I was in pain when I woke up. People would come and speak to me, but the only thing I could say was "pain". I started saying it to people who were just walking past. They put me on fentanyl pretty quickly. Does anyone remember the chapter from my first journey on fentanyl? Yeah. Well. Fentanyl doesn't work for me. I don't know why, but we have officially confirmed it. Fentanyl DOES NOT WORK. My first day out was extremely unpleasant. I had a constant agonising pain in my stomach. I'm not good at describing pain, it all seems a bit cliched to me - my stomach was on fire, it felt like a rod of red-hot steel - none of it really describes it. It just fucking hurt. I really could think of nothing but the pain. Dr B tried to explain what she'd done - nope, completely uninterested. All I could think about was the pain and making it stop. Eventually the pain management team came and I was eventually switched onto morphine (apparently they don't even stock pethidine at the hospital). Things settled down a bit after that and I could think about something other than the pain. Richard could explain what had happened and I could take it in then.

Poor Richard. It was so hard for him to see me in such a state - he said it absolutely terrified him to see me so helpless. Once I came around I was stoned to the hilt as well, so definitely not my usual self. I think he really struggled to sit around and just be, with nothing he could do to help except be there. Brad came at about three, and I think that really helped Rich, just to have someone else who cared to just sit around quietly with. I vaguely recall telling Brad he could hold my foot. I remember it being nice and peaceful, with people who loved me there, but not making demands, so I could just drift in and out of consciousness. Jacqui came after work, and stayed with me while Rich went to pick Mama up from the airport (she booked the first flight she could down). They came back to the hospital late that night, so I could see Mama before I went off to sleep. It was so good to see her - it doesn't matter how old you are, there are times when a girl needs her mama, and being cut open is definitely one of those times.

I had a bad night - I was still in a fair bit of pain, and I had one of those nurses who really shouldn't be in the profession. She wasn't unpleasant, or mean, or anything like that, just - indifferent. No real interest in what she was doing or the people she was dealing with. Never smiled. Indifferent. And because I was fresh meat on the ward, I had "observations" (obs) every half hour or so - blood pressure, pulse, temperature. The change of shift at about midnight were quite nice, and a couple of nurses stayed for a bit of a chat when they noticed I wasn't really sleeping. I continued to drift in and out all night but didn't really get much quality sleep at all.

The next morning, something wonderful happened - the nurses came to give me a shower. It was awkward, it was painful to move - but oh, it was wonderful! The hot water! The clean feeling! Just bliss. With all my tubes and connections, it was awkward and difficult to negotiate, and it was definitely painful to get out of bed and move around quite so much, but it was lovely. Never have I enjoyed a shower so much. I then sat up in a chair for a couple of hours and felt like a proper big person again. (I then spent the rest of the day in bed, dozing, but hey, it was a start.) The day before, I had had no food. I didn't really notice that I was particularly hungry, but it felt a little strange to not be eating. Thursday, I started my clear fluids diet. Yum. Not. Vegetable broth and green jelly. I was so excited at the thought of getting fed that I didn't mind. Come chicken broth and red jelly for dinner, and I was less excited. Friday's tomato and rice broth with green jelly and I was OVER it.

Interesting thing about abdominal surgery. They pump you full of gas and move all your intestines around. They need to be sure that your digestive system is working again. And how do we tell this? When all that gas they've pumped you with makes its way through. And they won't feed you till it does. Yep, no farty-farty, no foody foody. Nice. And EVERYONE asks if it's happened yet. So, I got real food on Friday :)

I was feeling pretty good on Friday. I got my catheter taken out in the morning, and was doing well with the pain management, so I got my IV line taken out in the evening. I was free! Dr B came to see me, said I was doing good, and said I could go home the next day - on one condition. I was to do NOTHING. I was to lie around being waited on hand and foot by Rich and Mama. I agreed quite enthusiastically.

Today (Saturday) was frustrating. We knew we could go home, but still had to wait for the hospital pharmacy to give me my drugs. It took till 1.30 this afternoon, but the moment they came, we ran. I am free!

I am not allowed to walk anywhere until a full week after the surgery. No lifting, bending, stretching for four to six weeks, the longer the better. Normally people who have this surgery don't leave hospital for about a week, but my philosophy is that if others are doing it, then I'll do something completely different, thank you very much. There are some benefits to being young, fit and healthy when it comes to major surgery.

So, here comes my week of lounging on the couch, reading and watching movies! Jacqui is bringing me a box of Enid Blyton-style childhood books, which should keep me endlessly entertained! I am healing well, feeling quite good, and most importantly, I am home again.

Much love,

Jessie xoxo

Addendum

Well, it's the night before my surgery, and I've had a bit of feedback on my blog - namely, yes, Richard will be there - he has cancelled his trip to Dubbo to stay by my side. He is a good boy. We will be at the hospital at seven to check in, and then my surgery is due to happen at 10.30. It should only take half an hour or so.

Best case scenario is actually major surgery tomorrow - if it's just a fibroid, then the doctor will take it all out tomorrow, in which case I'll stay in overnight and spend a couple of weeks recovering, but then it's all over. If it's not definitively a fibroid then she'll just look at it, maybe take a biopsy and then we'll have more and bigger surgery later.

I'm happy that everything is all happening, but it's all a bit spread out... the laparoscopy tomorrow, the egg harvest in about two weeks, and then the major surgery about two weeks after that. That's actually quite fast, but it does mean that there's a lot of waiting in between.

I've had a great weekend - planning for and having the party, Anzac Day, sorting out the egg harvest - and now the surgery tomorrow means that I'm brutally coming back to earth and facing the reality that yes, this is all happening. So I'm a bit all over the shop - a bit scatty, a bit irritable and yes, a bit worried. But it really is a small operation tomorrow, and afterwards we should know a lot more about what's happening! I'm just coming out of my denial phase.

So that's it from me for the next day or two... Next time I post we should know a bit more!

Lots of love...

Jessie xoxox

Just another manic Monday...

Well, it is all happening! I've started hormone treatment, as discussed in the last blog. So far so good, the injections are pretty easy. The nasal spray tastes completely disgusting, but that's life.

Tomorrow (Wednesday) I go in for the laparoscopy! It's all happening a bit fast now. I've spent the last weekend not thinking about the actual surgery, being all happy about the harvest and planning Sunday's party, but now I need to actually think about the bloody tumour in my belly. And I'm a bit nervous about the whole thing. It's been a while since I've been under anaesthetic and while I know that I've handled it fine in the past (six times now), I'm still stupidly worried about the whole thing.

We met with the oncologist on Monday. She said that if it looks definitively like a uterine fibroid, she'll biopsy it and potentially take it out then and there if it's easy to do. If it's really ugly, already spreading and looks definitively cancerous, she'll probably biopsy it too, so that we know for sure what it is and can continue on with a bit more knowledge. If it's somewhere in the middle, she'll just look at it, no biopsy at all.

I'm tentatively booked in for surgery on the 19th May. It seems like a long way away, but it has to be after the harvest, which will be two weeks from yesterday, so the 8th May. Westmead is cost cutting, so have cancelled all surgery on the Friday after that - the 12th (my oncologist is only in surgery on Tuesday and Friday) and naturally the following Tuesday is already fully booked due to the cancelled Friday. So Friday the 19th it is.

There's some emotional stuff I want to talk about too, but we're going out for the traditional Anzac Day BBQ, so I'll write more tonight.

Be afraid... be very afraid...

What a nice weekend... I've just said goodbye to my lunch guests. Spent a lovely day yesterday planning, list-writing and cooking (my idea of heaven - coordinating stuff, bossing people (Rich) around and cooking... bliss) and then today with good company and far too much food (quoi de neuf). Rich and I are off to a movie tonight and then I've taken leave for tomorrow and then Tuesday is Anzac Day!

Well, amazingly, it has been a very eventful weekend! Normally nothing happens medically on the weekend, but this time it has! I called my oncologist repeatedly on Friday to find out what was happening with the laparoscopy. She rang me back Saturday morning, complete with her two-year old screaming in the back ground to tell me that she can fit me in on Wednesday. Hurrah! So I rang the fertility clinic, which is open 7 days a week (since apparently women's periods won't behave and fit into the nine to five, Monday to Friday time slot) and they saw me today (Sunday) to teach me how to use all the drugs! So from tonight, I take a nasal spray that will suppress all my natural hormones, and from tomorrow I start injections that will stimulate egg growth. I enquired as to the extremely remote possibility that I will turn into hormonal cranky bitch, and the nurse assured Rich and I that I would indeed turn into a very scary women and recommended flowers and footrubs. PMT on speed apparently. Nice. Mama seems to have reversed her desire to come down as soon as possible and now wants to stay away until I've finished fertility treatment. (I'm joking, obviously. Mama would be down here within the hour if I asked.) Please be nice to Rich in the next two weeks!

So that means that we'll be able to harvest eggs in about two weeks, and then the major surgery will follow from that! I am extremely relieved about the egg harvest, one less thing to worry about. The whole infertility question was the big thing that had concerned me all last time.

Naturally, the speed at which this all occured is due entirely to Rich booking flights to Dubbo to watch the plant out there pour their first batch of concrete - so he won't be in town for the laparoscopy. And yes, it is fairly important for him to go - one of us has to be advancing our careers during this time! So a good friend of mine has very kindly offered to spend the night Tuesday and then come to the hospital with me on Wednesday. I'll probably spend Wednesday night in hospital and come home Thursday. I don't know whether I'll work on Friday yet - have to wait and see how I feel.

As I said, work has been very understanding. I'm a bit frustrated at the timing of it all though - I've been working on a couple of projects that are due for completion in the next couple of months, and it's highly likely that someone else will now implement them instead! But I guess it is a question of priorities, and my health is the most important thing right now. But it is bad timing.

Thanks Auntie Anne for your comments! I really do love writing and I have never dedicated the time I should to it. I only half finished Lucas the Legoman which I started when he was born and is now far too old for. The tale of Lucas the Legoman who got left behind under the couch and had to battle all the monsters (the cockroaches, giant dust balls, the vacuum cleaner) to get back to Lucy the Legolady! Really should finish that.

Well, I am meeting with the oncologist tomorrow to find out more about the laparoscopy and sign all the scary consent forms, so I will update again tomorrow when I know more!

Another day at the office

Howdy all.

Quite a good day today. I went into work today and actually felt like I achieved something today. I've been feeling bad because this week my work has been quite sporadic, since I've had so many appointments, but I got some stuff done today. Of course I had to leave this afternoon to go see a new specialist, but I did have a very productive morning :-)

Off to the fertility specialist this morning. Looks like harvesting eggs is going to be relatively straightforward, and more importantly, we can do it concurrently with the laparoscopy so no time delays. Just a bunch of injections (done by moi!) everyday for a couple of weeks and some easy surgery to pull 'em out. No dramas. Basically, females start off with a couple of hundred thousand little eggs, then gradually they die off. Each month you release between half a dozen and a dozen, of which one of it makes it as a big egg, and the others die off. The drugs I'll be taking will make all of the half-dozen or dozen released eggs big and then they can be extracted (not sure of the exact surgical procedure, but it's done under a general, and should only be an overnight stay). Obviously I turn into seriously hormonal cranky bitch girl during the heavy hormone injection period, but presumably nothing too much out of the ordinary...

I am now trying to get in touch with my oncologist to organise a time for the laparoscopy. Ideally that will happen next week, then the week after I can have my surgery to harvest the eggs, then the week after the surgery to pull the baby alien (as I know think of the tumour) out. In an ideal world, of course.... I'll let you know tomorrow what sort of time frames we're looking at in the real world!

Thank you for all your messages of support. My family and friends are very special to me, and I feel very blessed to have you (uh oh, starting to sound like bloody Delta or Kylie!). I really do love you very much!

Why we are called patients...

What a frustrating day! So ridiculous. I had my appointment with an oncologist this morning at Westmead Hospital. He was a lung specialist, since the thinking was if it's cancerous, it's the same cancer. He and his sidekicks (I know they're registrars, but it's much cooler to have sidekicks) looked at my scans, asked me lots of questions about other symptoms (none) and then decided that since it was no longer in my lungs, it should go to a gynecological oncologist. Luckily, she could see me that afternoon. So, I called work to say I'm not coming in this afternoon after all and waited patiently to see the next oncologist.

She is really good, and knows her stuff, and I like her and would be very confident in her care. Unfortunately, she knows her stuff a bit too well - ie she is a gynecological oncologist and that's pretty much her entire sphere of reference so that's all she's focussed on. She seems to have all but dismissed the whole cancer in the chest thing, and is treating the tumour as if it was a fibroid growing from the uterus. And if I was a normal healthy female that would be fine - except that I do have a history of ruddy great tumours in odd places that happen to be cancerous! So I would really like her to have a little bit more of a focus on that issue and a little less on trying to fit me into a box that she understands better.

I suppose it's only natural - everyone has their little area of specialty and no one wants to treat me unless it falls into their area and if it doesn't then we can just think about it differently so it does.

Anyway, the good thing is that she's taking my desire to harvest eggs quite seriously and is booking me in to see a fertility expert straight away, before anything else happens. Unfortunately, this takes even more time, plod plod plod. She then wants to do a laparoscopy to look at it before we go in and take it out. I kind of think this is a waste of time, since I don't want to do a biopsy, but it's a simple procedure and I think looking at it will give us an idea of whether I do need to harvest eggs immediately or not and give us an idea of the urgency of the situation.

So, she will call me in the next day or so with a referral to the fertility guy, and then I'll see him to discuss what needs to be done fertility-wise.

I know to a lot of people all this mucking around with fertility seems like a waste of time, but it's very important to me.

Jess getting ready for the races!

Emoting 101

I'm not emoting very well. I'm still a bit numb. To be honest I just don't think I'm ready to think about or deal with this at all yet. So I am constantly doing something... anything, as long as I'm not sitting quietly and thinking. I know I'll feel a lot better once I do think about it all, process it all and maybe actually CRY, but it just seems all too painful and hard and I keep putting it off.

I did start emoting a little bit yesteday. I went to the races with a group of girls (I've spent over a year in Sydney, and now that it seems that I actually have a group of girlfriends, I have bloody cancer to prevent my enjoyment of it. Sheesh.) and tried not to think about it at all. About half way through the day (probably assisted my champagne), I actually experienced an emotion... guilt.

Yes, I feel guilty. I feel guilty for being sick and throwing my life out of whack. I feel guilty for disturbing the happy little life that Rich and I are making here in Sydney. I feel guilty for making friends here in Sydney, then getting cancer and then asking for support. I feel guilty because I'm trying not to think about the cancer thing, so I'm not calling people to keep them up to date. I feel guilty for making other people think about this, and support me. I feel guilty for demanding attention. I feel guilty about asking for special treatment. I feel guilty for being different. I feel guilty for upsetting the lives of other people. And I feel guilty because I'm numb and not crying and screaming and generally being upset like I feel I should be. I feel guilty because I want to isolate myself and pretend it's not happening, and at the same time I want my loved ones around me.

Hey, it's an emotion - it's a start. And I know it's not a constructive emotion (it's a bloody stupid emotion), and it's certainly not a rational emotion, but it is an emotion, and that's a step in the right direction.

Jess's First Journey

As you know, this isn't the first time I've travelled the cancer journey. Here's an account of my first cancer journey, back in Brisbane in 2003, written in 2003.

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

Guess who's back...

Well, hello all.

I remember thinking a couple of years ago that I should have kept a diary or a blog or somesuch of my journey through cancer. But by the time I thought it, my journey was all over and I was moving on with my new life and there was no need to rehash over it all.

You should be careful what you wish for, because I've now been given a second chance to write this blog. That's the good news. The bad news is that since I am now writing this blog, it does mean that I've embarked on the cancer journey again. AGAIN.

Yes, it's back... back again. Cancer's back... tell a friend. (Song of the week: Eminem - Without Me.)

So, what happened? On Tuesday 4th April, 2006, I woke up with some fairly major abdominal/pelvic pain. I'd had the same pain three weeks earlier, but assumed it was period pain (for the first time in my life). This time, though, there was no valid explanation for it (not time for my period) and it was quite ridiculously cripping. Every couple of minutes I'd get a wave of sharp stabbing pain up through my stomach - and it was especially bad whenever I moved or changed position or walked. I went to work that day (I had my six months performance review) but was in a lot of pain all day and it was very difficult to hide. I took the next day off and went to the doctor.

The doctor did an internal examination (I mean, where do you look at such a time? I find I get the urge to crack jokes about taking me out to dinner first) and felt what he thought was an enlarged uterus, so sent me off for an ultrasound the next day. I went to work on Thursday and left early for the ultrasound.

Ah, what a flashback the ultrasound was. The test was fine, pretty easy (apart from the drink a litre of water two hours beforehand and don't go to the toilet - and then we'll poke and prod your stomach thing) but afterwards, when everyone there told me that I MUST GO STRAIGHT BACK TO MY GP (four times)... well, I've heard that before, and it ain't good.

So I went straight back to my GP, who confirmed that yes indeedy, there was a 7 by 8 by 9 (later confirmed to by 12 by 8) tumour chilling out in my belly, on top of my uterus. How to ruin someone's day in one easy step.

To make it all worse, Richard was away. He'd left on the Tuesday to inspect a bunch of concrete plants up and down the NSW coast, and wasn't due back until the following Thursday. So I went home to an empty house and tried to come to terms with the fact that my life had just turned upside down.

Naturally, I didn't like that idea much, so rang Jacqui to come out and spend the evening - with the obligatory trip out to Max Brenner. (I am trying to stop using food as comfort/reward/procrastination whatever, but it didn't really seem like the time... say what you like, chocolate souffle really does help at times like that.) So not alone for the evening.

Friday was a really really really lousy day. I went in for my CT scan, and the doctor took five attempts to get a line into one of my veins. I was struggling not to cry as I waited for the CT to start - the whole CT alien abduction experience really hammers home the fact that I have cancer again. And I was on my own, scared and really really angry that my life was going to be highjacked again.

Back to my GP, who asked me to ring my oncologist in Brisbane. Now James Morton is a fantastic doctor, but there is a reason we call him the roadrunner - he is frantically busy and always running around. It was 5 o'clock on a Friday afternoon, and as soon as he finished work, he was off on a two week holiday. So I guess it's understandable that he didn't have time to refer me to an oncologist down here, but not having the name of an oncologist slowed down the process a lot.

I had booked flights for a weekend in Brisbane that weekend. I was determined to have a good weekend - the denial weekend. The first time I had cancer I spent the denial weekend with my family on the Gold Coast. The denial weekend happens when suddenly all you can do is wait, and there's no point dwelling on it all, so you go off and you have a weekend of constant action, never stopping to think about things, and the whole thing feels slightly hysterical.

Anyway, I had a great denial weekend in Brisbane. I told everyone, but I definitely put a major positive spin on things, and made it all out to be something that would be over quickly, just a quick surgery sometime soon. And I really hope it is.

Monday at work I told my boss, who was fantastic. He told his boss, who told her boss, who agreed that I could have as much sick leave as I needed. This is a very big thing since I have absolutely zero sick leave left (I did have three days but I used it all last week!). Now I won't have to worry about coping financially while I'm recovering from surgery - if my employers hadn't come through like that, I would have had to take sick leave without pay. They have absolutely no obligation to give me that sick leave, so I'm extremely grateful.

Tuesday, I told some of my friends from work. I was a bit nervous, because last time some of those who I thought were good friends simply dropped off the face of the earth, unable to deal with it. I haven't known them long, but they were fantastic - actually said all the right things! Rachel saw right through me, and told me very sternly that I don't need to pretend to be strong all the time and that it is actually okay to crumble every now and again with her. Then we went to the pub (2for1 cocktails on Tuesday night) and drank far too much on a Tuesday night... I got home late, but it was definitely better than being at home by myself.

Wednesday, things started happening. My fantastic GP, Dr G, had spent Tuesday trying to find an oncologist for me. On Wednesday he found one, made me an appointment for the following week, and called me in to his surgery to discuss. The oncologist wanted a CT of my chest, a full bone scan and a biopsy, so we made appointments for all of it for the next day.

So, Thursday, I rock up to the x-ray clinic at 8.30 (fasting), and go in for my first scan at 9.30. I'd forgotten how much waiting around there is. So I had my chest CT (with no contrast, which means no prodding around in my piddly little veins) and then toddled off to nuclear medicine for the first step of the bone scan.

There's something really really wrong with being injected with a substance from a lead syringe. Surely, if this stuff was safe to disperse through my body, it should be safe to carry it around in a normal container? Hell, no, this stuff is radioactive. So I have my radioactive shot and I'm free for a couple of hours while the radioactivity works its way through my body.

I really want someone to play "Radioactive Girl!" with, but there's no one, so I go shopping. I'm planning another denial weekend, complete with trip to the races, so I go shopping. I need a hat or a fascinator, preferably fairly cheap, since I'm pouring money into the coffers of the medical industry. So, one fascinator, sunnies and some bangles later, I'm back at the x-ray clinc for my bone scan.

I jump up onto the alien abduction guerney, they position my body and then the machine, and then I... go straight to sleep. Yes, I do. And I snooze on and off for the next forty minutes while they reposition the machine around me. Then back out to the waiting room, where I wait for another hour while they write up the reports, then back home.

Finally Richard comes home... tired and grumpy after driving for seven hours, but I'm so happy to see him. I was really getting sick of being on my own and trying not to think about things. Unfortunately we need to go straight to the GP again, so we do, to talk about today's results.

My chest CT was completely fine - the original cancer has not returned. The bone scan was not so good. There appears to be a spot on my clavicle (collarbone). There are two reasons why this could be there - it could be radiation damage from the original radiation. I need to call my original radiologist and find out whether the clavicle could have been hit in the first round. Otherwise, it could be the nasty nasty m-word - metastisis. It could be a secondary cancer, which does kind of change the whole ball game we're playing. If it is though, it's an isolated, single secondary - which is very unusual. More normally there would be dozens of little metastises running through my system. More tests to follow next week.

So that's where I am at the moment. Richard is back thank goodness, and we're going to enjoy our Easter long weekend.

More later!

Much love,

Jess