Posted on May 19, 2016
Since radiation started last week, I sleep ALL THE TIME. I am for the most part getting people to drive me to the Alfred for my appointments and yesterday when I did the bulk of the driving myself I know that I won’t be able to drive there myself any more, as I was so fatigued on the way home it frightened me. Only five more sessions – five more times of asking people to go seriously out of their way to take me. I have such a wonderful support network, but gosh, am I wearying of asking for help all the time. Knowing I will never get my full independence back, well, it hurts.
I know, though, that I just have to suck it up, and am in the process of asking for all the help I can get, with Georgia especially. Referrals are going in here and there, and help is on the way. She is the most adorable scallywag at the moment, she is 8, but like 2 I guess, and now she is all about the house (which is exactly what we wanted), destroying everything in her wake. If you are cooking, you can always count on her being at your side, pulling all the pots and pans down from the shelves next to you! At 8 years old, she needs someones eyes on her basically all the time – I’m childproofing the house as I go along. It’s been a long time since I had to do this!
Before we went to Thailand, the organisers of the trip, Lea and Geoff from Hello Me (you can find them on facebook and lots of pics of our trip if you would like a look) conference called me to see what they could do to make the trip easier for me. It was so lovely of them, but I was all like no, no, I am fine, I can do everything myself. I was so bloody determined that just one more time I would feel what it was like to be totally independent, to hop on and off planes like a pro – like I used to! I was fucked right from Melbourne airport. I missed the plane by a few minutes (my fault, not blaming anyone else). The staff of the airline were quite unpleasant to me, and I totally lost my shit, and was sobbing by 6.30am. It really didn’t bode well. I bought a ticket for the next flight and checked in my luggage. This was a no frills airline and I had to put my luggage on the scales myself lol, who would have thought 15 kilos could be so heavy! Then when I collected my luggage in Sydney, I had to take it from the domestic terminal to the international one, which was about 6 kilometres away on a bus! I thought any weight in a suitcase on wheels would be doable, but it was exhausting pulling this fucker around with two pieces of hand luggage! When I got to the international terminal, I went and changed my clothes and put on more make up and tried to pull myself together, though at this stage I was completely fucking enraged, with myself, with cancer, with all that I had lost. I got in mobile contact with one of the women I was travelling with and she told me what check in counter to head for. When I got out of the lift I found that this was the last check in counter and I just couldn’t do it. I stopped halfway there, dragging this big load of bricks and rang this girl back, who came and rescued me with the case. When we got to the check in queue it was HUNDREDS of people long. Remembering that I have two hip replacements as well as terminal cancer, this was the time to play the “cancer card” if there ever was one and try and expedite myself to the front of the queue. But NO. Not silly old me, I stood in it for an hour and a half like everyone else, and I was in so much agony at the end, sweat pouring out of me from the effort of trying to deal with the pain (liver stabs and hips burning). I found a couple of the girls again and swallowed a heap of opiates and cried in pain, which is something I rarely do. Frustration yes, pain, no, not usually. We went through customs, and then realised the walk to the gate was really going to be too much for me, so I allowed one of the girls to get me a wheelchair. I can’t imagine how high maintenance they thought I was going to be at that stage, I am sure the other 10 girls thought there goes our relaxing holiday, gonna be fun dealing with this one! And that was exactly what I DESPERATELY DIDN’T WANT. So I got even more upset. The 10 hours on the plane was challenging to say the least (it deserves a blog post of it’s own), and then we touched down in Thailand’s incredible humidity at what would have been well after midnight Aussie time, and I had been up since 4am. I am not sure, but I think I might have SNAPPED at poor Geoff, who is an absolute saint and gorgeous man – it would have been just brief if it happened, but I remember thinking to myself fuck I wish I had not come on this holiday, I was absolutely beside myself at this point. If the prospect of another 10 hours on a plane hadn’t been going to tip me over the edge, then I think I would have just turned straight around.
Thankfully, as soon as we got in the bus on the way to the resort, I rallied, and I think that everyone will agree that I was a normal person’ish for the rest of the holiday and didn’t cause anyone any grief whatsoever. But there is a moral to this story. If you are in a position like mine, then no matter how much it hurts, you MUST let people help. Lea and Geoff weren’t having any of my bullshit on the way home and organised assistance for me (and gave it to me themselves by accompanying me personally on all parts of the trip home as far as Sydney) for every point in the journey. As soon as we got to Phuket airport there was a wheelchair for me, and this man took me through customs, immigration, filled out the boarding card for me, and wheeled me all the way to the plane. I didn’t even have to get up to go through the body scanner, this lady just came and gave me a sort of pat down in the wheelchair. The flight home was heaven, as they had managed to get me a seat with no one next to me and I could stretch out a bit. Then at Sydney, there was another wheelchair, all the way to the bus to the domestic terminal, and Lea and Geoff took me there and waited with me until their flight home left. I was given a full row of seats again, at the front of the plane, and when we landed in Melbourne I was met again by another wheelchair. As it turned out, this terminal was right down the end (geez, i can pick ’em), and it would have been, without a word of a lie, about a kilometre to where Gaz and the kids were waiting. The trip home could not have been more different to the trip there, but I had to let go of something that was very important to me. My independence, or at last the illusion that I have much anymore. I had a cry to Geoff at Phuket Airport about it – realising how much easier accepting help made my “journey” in more ways than one, but how incredibly hard it was to NEED help. I just want to be like everyone else again – so much. But those days are gone forever, and it’s just another thing I have to let go of.
I am so tired at the moment that I cried to Gaz last night that maybe this is the beginning of the end. Who can sleep this much? But this was already happening to a smaller degree when the SIRT was working and my liver function was perfect, so it is probably premature to be worrying that I am in liver failure and about to die. When you are so tired it is difficult to get some perspective on anything to be honest. And I am not in any pain at all, just mind and bone numbing fatigue. This morning I forced myself to the supermarket after the school run to get a few days worth of food for easy evening meals and I am going to attempt a cook up today. If I manage it, it will be the most exciting thing that has happened to me all week, because it will mean I have been awake for a few straight hours! I hope some of this wears off after radiation finishes. I do remember it did after my bowel radiation finished, and I have been told that this targeted radiation I am getting at the moment is 11 times the strength of that.
Some Thailand pics at least! My friend Dani came over from her home in Singapore, where she is doing the expat thing, to stay with me for two days, it was the BEST!
She bought me new bathers, and heaps of new kaftany type things, she spoiled me rotten to be honest! Rack alert!
On the way to Phi Phi Island with all the girls:
Ya think I didn’t love this pool bar sick? Me and my mate Mrs Woog, hamming it up:
It might surprise you to know only one of these is a woman! Geoff and I at the ladyboys show:
Our very own Ketut:
Mrs Woog and I, being sausages, and having a read of each others books. Such a fun photo shoot, that was! Mucho grinning:
Thanks for staying awake with me all that time! I’m off to cook!
They were all there when I emerged from the terminal on Sunday.
My dearest love, with a little girl in a pram at his side. I’m not sure she knew I left, but she seemed happy to see me back. Three others, with hair from blonde to brown, all talking over the top of each other to get their stories told first!
Seven days felt like a lifetime, to me, without them. How was a lifetime without me going to feel, to them, without me?
Joy has a hangover, I’ve found. It doesn’t come from too many cocktails by the pool, or too many vodka’s from the mini-bar. It comes, instead, from having seven days to think about what potential your life has, if only you were going to live long enough to enjoy it. It comes from seven days of anticipating a reunion and realising that one day there won’t be a hello at the end of the long goodbye.
When I walked in the door, I melted into the warmth of my home, the comfort of my people, the familiarity of my routine. Gaz hoisted Georgia onto the couch next to him and I asked her all sorts of questions, what she had learned at school in the last week etc. Gaz and I both giggled at the silliness of this routine, as Georgia has no speech, and whatever she might have to say in answer to my questions shall remain a mystery, but I ask anyway, and she giggles in response, just because she likes it when we talk to her.
I’d give anything to keep this – anything. I want to hang on, for dear life, but I don’t know how long I can. With the news that came via my last test results, we know that I am not going to get that reprieve now….that period of maybe months off chemo, where I could have just one more beautiful time of being a “normal mum”, and dreaming that it won’t end so soon. Now it’s just putting out fires, until we run out of water. No exhaling, no meandering, just running headlong in one direction and another, looking for a dam with a bit left in it. Every bit of me wants to live, but I’m so tired. SO tired. The tide is turning. It’s subtle, but I can feel it.
Sometimes I watch my children walk away from me, and I feel a physical pang, like they are walking away forever. I felt that this morning, as I dropped Dakota at the drop off zone, and she ran to catch up with a friend. She hates it when we say so, but she swings her ponytail like Marcia Brady. I wanted to yell out to her. Come back baby. Spend this day with your mum. Did I ever tell you how proud I am of you? That you have such self possession, at an age when I would have been terrified if anyone so much as looked in my direction. Come be with your mama today? But I can’t, I’d want to hang onto her not just on this day, but forever, and I bought her up to live her life, and she does it with such gusto. Half of her is me, and I will just have to continue on with my day, holding the pride of that close to me. Wishing I didn’t have to teach her to live without me.
People tell me all the time, to comfort me, I’m sure, that I must just get on with my life, that any of us could go out and be hit by a bus at any turn. That I’m no different. I don’t think anyone realises how often I have wished that lunatic bus would come swinging around the corner and take me out. The sheer relief that it would be not have to think about saying goodbye. I think, ALL THE TIME, about the first time they were in the room with me, these four beautiful souls, just minutes in the world. I felt so lucky. Now, I think just as often about the heavy ache when they are no longer in the room with me and I know they won’t enter it again. It’s unbearable. I know I’ll never be ready to say goodbye to them, and they won’t ever be ready either. It’s like we’re in one of those dreadful wind tunnels, with the wind pulling me one way, and them the other. I scream and scream for them, I hold out my hands, but I can’t reach them.
This morning after I dropped the girls off at primary school, and was on the way home in an empty car, a truck slid across the wet road and into my lane. There was time and distance for him to correct, and me to swing a little over into the verge, but I did wonder if the timing was just a few seconds different….how easy it would have been. Not one part of me wants to die, but just today, I don’t want to live in this hell, either.
As always, I will dry my tears, and go and get them from school. We’ll have some dinner, and then we’ll tuck into bed for Masterchef. We’ll laugh, not at the way the fennel is presented on the plate, but that they dreamed of putting fennel on there in the first place. Indi will tuck into me perfectly, and say “you are so warm mama”, and Tana will look over enviously and ask if she can have a go in a minute. We still have that tonight, and that tomorrow, and we’ll keep on having more, for as long as there is water in the dams, and the lunatic keeps control of his bus.
And that, is the hangover of joy.
It’s TOMORROW. OMG, I am going overseas, through those international gates, bound for sunnier climes….TOMORROW!
This is the trip I am going on, one that many of you helped to make possible:
Looks, pretty hard to take, no? I wish I could take you all with me.
The “mental landscape” under which I was going to take this trip was meant to be so much different. I thought that we would have confirmed that my SIRT treatment was working, and my lungs would be done and I would be going over there on top of the world. However, things have changed, and I can’t deny them. Yes, I am getting the radiation done when I get back, but realistically, I am feeling deterioration in my liver at quite an alarming rate, and I think we are going to have to take a careful look at that before radiation is commenced, to see if it is even “safe” for me to stay off chemo for four or so weeks clear of the rads. I have new pain, in a new part of my liver, and I dunno, I don’t think “new” when it comes to cancer is ever a good thing. BUT, having said that, I have a very large hernia from having so much stomach surgery. It is approximately the size of a watermelon, but in the last few days it has got bigger again. It used to go from the bottom of my stomach to my waist but in the last week or two it has grown a few more inches and now finishes just below my rib cage. And what is under my rib cage? That’s right folks, my LIVER. I can feel now that the hernia is pushing my liver out of it’s space, so to speak. I can feel it physically pushing out the side of my waist, there is an actual lump there now. This new pain, well, it’s basically like having Croc Dundee’s knife driven into the area directly underneath my right boob, several times a day. It makes me sit up pretty fast, believe me. It only lasts a few seconds, and a change of position will relieve it straight away. It is almost certainly nerve impingement and so it doesn’t take a rocket scientist to work out that “Clarice”, as my friend Sam recently named the hernia baby, is pushing my liver upwards, and there might be no other reason for this pain than that. Enough boring you with all the medical details, I guess I am just trying to explain why my brain is a shitstorm all the time…because I don’t KNOW! For the time being, I have decided not to worry, it will change nothing, and I like the radiation oncologists attitude to the situation, “one step at a time, as things come up, we will deal with them”. He’s so soothing.
So, what of the beautiful gift that you have given me with this holiday to Thailand? You are probably going to think I sound like a real twit here, but I actually had to have a counselling session with the psych to deal with my guilt that I get to do this wonderful thing through the generosity of others, and other people don’t. She re-assured me that this guilt was normal, which felt good, but of course she also said I need to absolve myself of it, as it is unjustified. I can honestly say now that I have let go of this, and I can also honestly say that I am incredibly glad it happened. What you have all done, and I am talking all of you, whether you chucked a bit into the fundraising account, or you just supported the idea of me going, or you have liked and shared my excitement as everything started to come in, the passport, the tickets booked, the itinerary. What you have done is (I don’t know any other way to put this) given me permission to be selfish. Because I can tell you that I am far from perfect, I’m human, I’m flawed, I’ve got a list of faults as long as your arm, but I’m not selfish. In the last two and a half years, there has not been one decision that I have made that doesn’t consider my family, and the impact it has on them. At no point have I come home to Gaz and said fuck you Jack, I’m dying, I’m going to do this, buy that etc and you are just going to have to put up with it. Actually, that is not entirely true…when I was leaving to go and get my first big piece of ink, Gazbo said “you know I’m not a big fan of tattoo’s on Sheila’s, don’t you?” And I said fuck you Jack, I’m dying, if I want a bloody big arse tattoo, I’m getting one. And he, quite sensibly said, “no worries love, see you tonight”. 😛
So no, in all honesty, as much as I would have wanted to, I wouldn’t have gone on this trip. Whatever funds are available must be spent on having experiences with my family. I wouldn’t want it any other way. Also, at the moment we are starting to investigate clinical trials that are only available in other countries, and if it is possible to get on them, the costs will run into the hundreds of thousands. It will mean selling our home, and everything else we own, but if they are positive enough, then we are prepared to do that. Gaz said that he would happily live in a tent for the rest of his life if it meant they could have me, and I feel pretty much the same. I love this home that we have made together, but what does it mean if I am not at the heart of it? Big decisions have to be made about this big stuff pretty soon, and solo holidays to Thailand simply couldn’t have come into the equation.
There is a feeling that evokes each time I think about walking through those departure gates tomorrow. A kind of freedom that I thought I would never know again. Because, you see, I am not taking cancer to Thailand. I’m taking half a suitcase of colostomy supplies and opiate medication, there will be reminders of what always lives in me now, but cancer is not coming. For the first time in 2.5 years, for one beautiful, glorious, joyful week, I will be something I dreamed of – I will be, Just Julia. There will never be enough words to say thank you for that.
I am going to close here with what is probably going to sound a bit like justifying myself, and my mates are going to pm me and tell me off for it and tell me I don’t have to do it, which I don’t of course, but you know me, always throwing it out there. So, here’s the thing. Gaz wants me to go on this holiday. He is worried about some things, for sure. Worried I will have a nightmare like I did the other night where I was trapped in a coffin and I couldn’t move, and woke up screaming, and he won’t be there to hold me all night. Worried about how much he will miss me, and me him (we were having a snuggle last night, and he kept saying over and over “seven days. SEVEN! We’re sooks, we’ve never been apart anything like that long in 16 years). Worried that I will get sick, or in pain, or be scared. Worried that I will get a case of Thai belly and my bag might burst in the middle of the night and he won’t be able to jump up and start the shower and tell me that everything will be ok. What he is NOT is resentful, jealous, pissed off, put upon by having to look after his own children for a week. He’s got plenty of support, from family, from friends, from people that want me to enjoy this holiday and are happy to support him in any way he needs to make this happen. We have all got our “things”..I like to go on holidays, and he likes to play golf. Every Saturday he plays golf, he tells me that it is the only time that he doesn’t think about my cancer, about what has happened to our lovely lives. If you asked him if he would rather play golf every weekend, or have a week in Thailand, I can guarantee you the golf would win out. The reason I say this is because every now and then, someone says “poor Gaz”. I can never work out if they are serious or not, whether they think I just follow my own agenda and leave his emotional carnage in my wake. Nothing could be further from the truth, I always think of the impact that my cancer has on him. And remember, for a year in 2012, HE was the one who had cancer, and I cared for him. So, I have a rather unique perspective of what it’s like to be on the other side. He rather enjoys the company of his own children, and I picture a week of movie nights on the big screen, watching motorbike racing with Dakota, and playing games on the x-box. Despite the obvious sadness that goes with what we are going through, I can assure you that there is no “poor Gaz”. Nuff said.
Here I am, Just Julia. Excitement level – fever pitch. See ya on the other side
In the very early days of my diagnosis with cancer, there was a competition run by a lovely woman who ran healing cancer retreats for patients, and she ran a competition on Facebook where people could nominate someone to win a 5 day retreat. All the usual things you would expect, good Ayervedic nutrition, meditation, yoga. A bunch of my friends nominated me straight away and I don’t think any other poor bugger had a chance at it! I was of course so grateful to all my friends who wanted this so badly for me, the last thing I wanted anyone to know is how badly I DIDN’T want to go. I’d just been diagnosed, I didn’t want to be away from my family, and to be honest, there were few things that I wanted to do less than attend this retreat. But, I pushed myself through it, I knew it might be good for me. I flew up to QLD and stayed the night with a friend who was driving me out to the retreat and we sat out the back and drank wine while I begged her to tell me how I was going to get out of going to this thing. It was made all the more confronting by the fact I had found out that I was the ONLY ONE GOING. A captive audience. To anyone who was more in touch with their “spiritual” side, this would have been a dream – for me, it could not have been more of a nightmare.
My friend drove me out to this beautiful Queenslander house in the bush outside of Brisbane, and I met the truly warm and gorgeous woman who was going to be looking after me for the next few days. I took a deep breath and vowed to try to embrace it, even if it just meant enjoying the setting, and the infinity pool, and the opportunity to relax.
Unfortunately, right from the start, this lovely kind lady was not going to have a hope with me. She cooked me dinner, while we talked about my diagnosis, and I talked about the kids and started to cry. Then I swiped the tears away and told her in no uncertain terms that she wasn’t going to make my cry again, there was no place for breaking down and not being able to get up again and what good would that do me? To her credit she knew there was every place for breaking down and made every attempt to get me to do it. Over breakfast the next morning she told me of her studies of Gestalt therapy, and what she had learned about where we hold emotional pain in the body and how it makes us sick. I think I shut her down by telling her that I thought it was all bullshit and victim blaming, as though saying that my early years of sexual abuse and bullying and a mentally unstable mother etc MADE me get cancer, as i didn’t resolve it. I told her it was all resolved thank you very much, the early years just were what they were, I didn’t end up depressed, I didn’t let the abuser ruin my sexual relationships with men, I had a lovely family and everything turned out fine and that was all she needed to know.
Later in the morning, the art therapist arrived. The crayons and paper got layed out, and I almost giggled. A bit of drawing, like kinder, I could do this. Well, as it turned out, that was the closest they came to “getting” me (I sound like I thought they all had it in for me, honestly, I didn’t, I knew they were so kind, but I didn’t want a bar of what I thought might happen if I let it, and so I wasn’t rude, but I was hostile). We had just started planning the march towards the possible curative liver resection, so I drew a piece of string, with a balloon on the end, the balloon signifying the day we could have a party because this shit was all over. But the string was too long, it was too fucking frayed, it had too many weak parts where it could break. Oh no, tears. The lady running the retreat and the art therapist sat there and regarded me with so much pride at all this water squeezing out of my eyes, but I was just mad. Once again I told them I knew what they were trying to do, but they weren’t to keep trying to make me cry. Gosh, I just wasn’t giving them an inch.
All in all it was a restful few days. I was cooked healthy food, I swam in the pool, I rested and slept, and read some, and I did yoga and guided meditation, which I did enjoy…it allowed me to relax and didn’t make me want to cry. In the end, I did leave grateful for having had the experience, and as much as I would have liked to say it was all balony, there were definitely positive things that I took away with me, even if I didn’t realise it straight away.
Shortly after, I went back to TAFE on schedule, but I only lasted one class…I realised, sensibly I think, that I had to give all I had to what was ahead – there would be time for that sort of learning later. Then my friend Anthony, who I had shared some classes with over the previous couple of years, but didn’t know very well started gently reaching out to me. He really was the most restful kind of friend, he would tell me about close people in his life who he had lost to cancer, who found peace at the end and who didn’t, and why he thought that was. I wasn’t upset or confronted by any of it, I simply found it interesting. There was no poor you, there was no pity, there was no sympathy, just gentle tales that meandered through my brain, subtle suggestions of works of fiction I might like to read (I was all yeah yeah mate, maybe one day, I can’t even concerntrate on Facebook, let alone a bloody book!) I know he thinks I give him too much credit for the way he managed to shift some things in me, but he is a clever man, as he instinctively knew that the only way to get through to me about anything important was to make it look like he was really saying nothing at all.
Later that year, I was in hospital having a prepatory procedure on my liver and after it, I had to lay still and flat for 6 hours. I was off my dial on morphine, but asked Gaz to go out to the bookshop and get this book Anthony had mentioned a few times….I had spoken about it on the blog before, it was Veronika Decides to Die, by Paulo Coehlo. I didn’t think I would manage to read it in my drugged out state, but I read it nearly all in one go. Initially I didn’t understand, I found the protagonist a self-indulgent pain in the arse. But then, slowly but surely, I started to see myself in her. To realise that some people meander through life just existing, not living, but not realising that is what they are going. Because lots of us (definitely me), we THINK, we REACT, we DO, but we don’t FEEL. I had been scared of feeling all my life, so all I did was really exist, if cheerfully enough. Also, one of the central themes in the book is about how Veronika never realised she wanted to live until she was told she was going to die, so that hit me at an emotional level. There were tears, when I read this book, there was so much nodding that my head nearly fell off, and I messaged Anthony and said ok, I get it, I understand why you thought I should read this book. But there wasn’t a big sob session, I didn’t get broken open, I just felt….understood. I think it was the first time that I realised that there were other people like me, others with the same struggles, people who locked away things inside them very deeply, as they knew that they might completely destroy them if they ever let them see the light of day.
Lot’s of things started to “come in” after that. I went on a bit of a journey of self-discovery, but I didn’t fear it. I had recently started the blog, and was already getting quite a lot of messages from people thanking me for my ability to put their pain into words in ways that they couldn’t. I was a bit embarrassed about it to be honest, but then I started connecting it to the “moment” that I had when I read Veronika. It is one thing to be loved, but as my friend Bekkii said so perfectly to me recently, it is another thing altogether to be SEEN. It did change the way I write, and I think it is at the heart of Breakfast, School Run, Chemo’s very existence, as as hard it was for me to throw my life out there in such a no holds barred way after a life time of keeping people at arms length, if it was helping people to feel understood, to feel SEEN, then I HAD to do that.
So, what of my own journey of self-discovery? Lately I have been rather smugly thinking that I know all I need to. I’m knocking it out of the park, because I can cry now. Not huge sob sessions, but I can allow myself the sadness of my impending death, the heartbreak of leaving my children and my Gaz behind so many years before we got to finish living out the fairytale. That’s bloody sad, sometimes I think about it and silent tears fall out of my eyes. I get a scary test result, realise my demise is probably getting ever closer, as much as I hope I am wrong. Yep, that is scary, I cry. I walked into my oncologists office last week for the first time crying as I walked in, and he was quite frankly alarmed as in over two years he has not seen a woman without her game face on. Hey, I’m getting GOOD at this watershed stuff. I’ve turned into a FEELING human, not a robot. I’ve been kinda mentally hi-fiving myself about this stuff lately if you must know.
Weird things have been happening lately, and they’ve been scaring me a little bit, so I have been trying to understand them, and what they “mean”. In this case, I think it would be more appropriate to feel instead of think, just let these things come in, trust that the universe will provide an answer, but they have been a bit too “big” so I have gone back to my old habit of thinking, or rather, overthinking. People have come back into my life that I haven’t seen for 10, 20 years…people that I had things to resolve with, some big, some small. One of my childhood bullies contacted me through the blog with a heartfelt apology, and a need for forgiveness which I was able to provide. When I was going through my house, ransacking it, trying to find my birth certificate so that I could apply for my passport for Thailand, I kept finding mementos from the kids from over the years, letters and cards to me, lovingly made pictures and trinkets made out of pasta shells and glitter and love. I started to get upset, as it was just thrown all over different parts of the house, like it didn’t matter, and I decided that the time had come to get out the four “memory boxes” I have under the bed, and start distributing things into them. Time to get those four journals and start writing in them.
Then I kind of started to freak the fuck out. I always said that I would not start this process until I knew I was in my final months, until the decline to the finish line was certain – I accept that day will come, but I will NOT grieve my end until I know it is coming thick and fast. So what the hell was with the idea of doing the memory boxes. Oh FUCK, am I accepting this death is coming, and soon? Is that why I am having people come back into my life that I have wanted to make peace with for various reasons? Why I have been able to give absolution to people who want to make peace with me? Is this what happens when you get close to the end? Why did I feel a strange kind of serenity with it? Is this what stops you from going stark raving mad when you know the reaper is breathing down your neck?
The truth is, I don’t know. I’ve asked a couple of trusted friends, and they don’t know either. But it’s all been bringing me closer to the breakdown that I didn’t even realise had to happen.
Bekkii decided last week that she wanted to take me somewhere this weekend to prepare my headspace for an appointment today that is pretty much my last hope to be offered more time than standard last line chemotherapy can give me. She looked around all week for somewhere to us to stay for the weekend, and was about to book something, when I found out that a couple of spaces had come up on a girls weekend that other friends were going on. We decided to join this, and this culminated in a group of five women at a charming little farmhouse in Portsea who all needed each other in a big way. Around hot tub soaks, and sits in front of the open fire, with drinks, and angel cards, and way, way too much food, we all bonded over a shared issue, which I won’t go into out of respect for the privacy of the other women, but needless to say we all kind of looked at each other and wondered did we all land in the same childhood and come out of it with the same issues. It was profound and beautiful and indescribable, and I was completely comfortable with it, and the sharing in it, as it was not, as things often are, focused on ME.
On the Saturday, we went into Mornington for High Tea and some op shopping. Funnest day ever, we laughed so hard over so many stupid and random things, it was so cleansing and I felt great. As we were about to head back to Portsea, I remembered that I had run out of some sedative drops that I have been using to keep me calm when I feel panic approaching, as it is doing a bit more lately than it has in the past. It was after five, but I remembered that the chemist that I always used to go to when I lived in Mornington was a late opener, so we headed there. Bekkii came in with me and we put my script in, and she started wandering through the perfumes and I wandered to another part of the store. This place was so very familiar to me, it’s a huge chemist, and it always had a cafe in it. When lived at the end of the street when Dakota was a baby, and I was pregnant with Indi. It was without question one of the happiest and most innocent times of my life. I used to walk my baby in the pram down to that chemist and have a coffee in that cafe EVERY day of the week. I got to know the cafe owner as a friend, and a lot of the patrons were elderly people, who took so much delight in my stunning baby, as I happily passed her from one set of arms to another for an hour or so each day, watching her light up their lives, as she lit up mine.
So, there I was, standing in front of the Darrell Lea stand, next to the cafe of dreams of days gone by, and I felt something start to build in my stomach. I saw my baby, I saw those elderly people, many of them probably long dead. I felt the innocence of those days when I used to believe that I would sit front and centre in every big moment in the life of that baby, when she became a little girl, a teenager, a woman. For all the world, it was like I was looking at that pram, with that baby smiling sunnily back at me and someone came over, some shadowy and malevolent figure and said “you know you can’t have her, don’t you? She’s not really yours to keep? One day something is going to come and take all this from you” And I saw this figure snatch her right out of the pram in front of me and run away with her.
And then I lost it. The fucking Hoover Dam started pouring out of my eyes, and I bent double with the pain, while other people in the chemist watched on in alarm. Finally Bekkii realised what was going on and I eventually managed to tell her where it was all coming from. I tried to do the usual, wipe the tears, get on with the living, but I was quite unable to, I was a goner. I got back to the car and the girls rallied around me. I kept apologising, sorry, sorry, I am ruining this weekend, I am sorry, I will stop crying, just give me a minute, it’s ok. But of course it is not ok that that baby and the three that came after her are going to get snatched. And they all told me that I WASN’T to stop crying, I was just to let it all out. And all of a sudden, I felt safe, so I did. I kept crying until there were no tears left (well, I thought there weren’t, but there were a few more here and there later).
And there it was. After two years, and five months, in a car with four sisters, came the breakdown that had to happen. And far from feeling weak, ashamed, guilty, silly, or any of that malarky, I feel washed clean, SOUL clean. I understand the sisterhood like I have never understood it before, and it was beautiful.
I don’t know what happens next, but I am a different person today, I’m better, and I am much, much wiser. Thank you Bekkii, Sam, Sarah and Feona, I love you.
I am going to keep this short, sweet, and succinct.
After last weeks devastating news, I had a visit to my oncologist (who I really love), I think it’s the first time I have visited him WEEKLY, and I wasn’t bloody impressed. I was going to put the appointment off until next week, when I saw the radiation oncologist, as I didn’t want him to pre-empt things by telling me that he didn’t think the radiation oncologist would treat me now. I wanted to hear it from him.
But, I realised that last week I was so hysterical that I took nothing much in, and I really did need to talk him about a plan going forward. I expected it to be a very depressing meeting, but this time I dressed up, and whacked on some make up, and by god I went in swinging. I told him that I still felt well, I still run my family and my life normally to a large extent, I have exciting prospects on the horizon, and sorry, I wasn’t going to take his third line chemo and wait to die.
He listened politely, but as it happened, he’d had a bit of a think himself and things moved sideways. He said I have always been radical, never taken no for an answer, always chased very extreme treatments (like a liver resection with only a 2 percent chance of saving me, and a 50% chance of killing me springing immediately to mind). He said to me that because I do this, I have to be realistic that a lot of what I am asking has a fairly small chance of coming off. BUT, he totally understands that there is no way that I am going to get to the end of my life and look my children in the eye, knowing I haven’t done every single bloody thing that I could. EVERY SINGLE THING.
Rather than telling me that the rads on my lungs are a pretty slim chance of being done, he pretty much told me the opposite, that he had spoken to the radiation oncologist, said I really really want my lungs done, and he sounds like he has pretty much agreed to do them. Well, fucking BINGO. Then he said about starting back on chemo, as the radiation oncologist would need time to plan the treatments and he would want some drug into me in the meantime. I think he thought I had decided to bugger the chemo off, which I never had, I was just gearing myself up for this dreaded third line business. Then, another sideways move – he thinks it’s too soon to move to third line chemo, and he wants to try another three treatments on the current regime, and then do another scan and see if it has changed. In the event of an unchanged scan, even if markers keep moving, it is safe to stay on the chemo regime I am on and assume it is holding it enough, as while the liver tumours stay this size, I can stay alive, they just can’t start growing out of control. He said that sometimes he has been able to keep people ticking over on chemo that appears to be losing effect for 3 or 6 months if the scans stay stable. HELLO! This 45 year old skin can stay smooth and rash free for a few more months darlings!
Then he really spun me out and told me to go to Thailand. He said in my position, he would travel as much as he could, do everything he could, have every bit of fun. I was going to take an extra week off chemo just to settle down, and he was fine with that, but he said if I am going to Thailand, I must have it next week, to give my immmune system time to recover before I go, so I have less chance of getting an infection.
Things ARE going south somewhere. We know that. But in the absence of knowing where, we can continue with treatment we can realistically hope will give me more time. The best bit of news was when I asked him if it is possible that my liver is still stable and there is some movement we can’t see yet in my lungs that is pushing those numbers up, he said while he couldn’t know, it IS possible. And that is what I have been hanging onto, the only thing that has kept me sane this last week. He said while we are treating two different areas with two different treatments, there is always the potential for responses in different stages. It’s WORTH having a go at these lungs, as if that pushes the numbers down, we will know that is what is happening. It is really the only way the prove it – how could I NOT push for this treatment? What if? I’m realistic that the upward trend in numbers mean my chances of years just got a lot smaller, but they are not by any means GONE.
THIS is my message, if you have cancer, chronic illness where there are treatments available etc, YOU MUST CHASE THESE, YOU MUST BE YOUR OWN ADVOCATE. What if I didn’t basically force them to sit up and take notice of my and my absolute determination not to close my eyes for the last time until I have done every single fucking thing I can to keep living this wonderful life. I dreamed all my life of being this happy, this fulfilled, and I will never give it up easily.
I have heard so many stories of people being told this is the end, take the chemo, go home to die, and do you know what – a lot of them take it on board as gospel, and do just that. DON’T TAKE IT LYING DOWN. Not ever. Not until you have explored every option. There are treatments out there that are medical treatments that are still not quite mainstream, but certainly backed by science and not snake oil, and by their very existence it means THEY HAVE WORKED FOR SOME PEOPLE.
If my oncologist and I were not learning to travel this path of my cancer together, if the universe had given me someone else for an oncologist, and he was just giving up on me, I would have started third line chemo tomorrow and I’d be dead by Christmas. Now maybe I won’t be. THINK ABOUT IT!
Sorry – this WAS going to be short and sweet!
This is me last night, out for a night out to watch my friends graduate from their diploma – I should have been graduating too. But I was proud to go, happy to still be alive, and look at that person. She is a LONG WAY from dead. That was the other profound thing my oncologist said today. It’s 40% how the patient feels, 40% the scan, 20% the markers. So, if you will pardon my French for the millionth time, the markers can go and get fucked. The other 80% is KILLING IT.
IT ALWAYS SEEMS IMPOSSIBLE, UNTIL IT IS DONE!!!
Love to everyone who needs it, and please hang onto HOPE. If it’s not everything in these trying times, it’s pretty freaking close!
I almost danced into the chemo ward on Tuesday. I had had my cancer markers taken the day before, just to confirm that sirt was still working, and I could walk out of there that day with the promise of not having to return for a while. I had a scan booked for next Tuesday, just to back up what the bloods said, and then results on the Wednesday. It never crossed my mind for a minute we wouldn’t be on track.
So, as soon as I sat down in the chair, I asked for the blood tests print out. I always look at them, and I had been enjoying seeing my liver function tests trending downwards until they had reached normal parameters 3 weeks ago. My oncologist had asked me not to see my cancer markers when he wasn’t with me though, as naturally he wants to be able to be there to talk me through it if they say something alarming. But in my mind, there was no way known they were going to show something alarming.
The first thing I noticed was on the first page, some of my liver functions were in the black again. The dark black. The colour of not normal. It wasn’t a significant rise though, so I tried not to be alarmed. I turned the page, ready to see the CEA markers, which had dropped from the 400’s to 108 in February. I expected something in the 40’s, or 50’s, and even had a little fantasy that I would be able to tell you all that they had dropped to normal too.
The number was 381.
To say I was completely blindsided would be an understatement. Nothing prepared me for this. I KNEW it was going the way I thought it would go….I’ve felt so good, we had a wonderful holiday in QLD, I was looking forward to Thailand. How? And for fucksake WHY? Was I so crazy thinking it was my turn for a break? Reading my last post seems to prophetic to me now…..I feel like I really WAS putting the mozz on myself by being so SURE.
Before SIRT and the promise of radiation on my lung mets, and the way everything looked like it was working so magnificently, I was in a really scared place, and it bought me to a standstill for most of the last months of last year. I had all the excitement of the book and the launch and the publicity, but that dies down, and I had no motivation to back it up. I was back to wondering seriously how much time I could have. Nearing my “two years”, not knowing when the second line chemo would stop working, leaving me with nothing but third line chemo, one tiny little drug I have left, that is going to leave me with a rash all over me, especially an acne like rash on my face. Hang on, doesn’t the fucking universe know I look the best I have in my life, an acne rash, I DIDN’T EVEN HAVE ACNE AS A TEENAGER. The day I was told that I have to start that third line chemo was the day that struck terror into me, only one step less than the day I say goodbye to my oncologist for the last time, as his work with me is done.
Wednesday, we arrived at that day. I had managed to get an urgent scan and appointment with my oncologist so that we didn’t have to wait another week to find out what those numbers mean. Problem is that we still don’t really know what those numbers mean, as the scan was stable. We know something is growing somewhere, but we don’t know where. I have never gone into an appointment like this, my oncologist was shocked. I usually apply the dress up, show up, never give up policy to my appointments with him especially, as I have always felt that the more zest for life he realises I have, the harder he will fight for me. Last Wednesday, it was black yoga pants, no make up, sobbing, and Gaz and Bekkii either side of me, all but holding me up. I’ve never been lower, and my oncologist did comment on it as I came past….”I’ve never seen you like this….”. How long can I keep taking these blows.
He didn’t put a positive spin on it, but he was pragmatic, as usual. He started writing up the third line chemo, and recommended that I report to it right on schedule, not miss a session, except now, if you don’t fucking mind, it’s WEEKLY. Weekly til you die, a rash for the rest of your life, nope you are not a contender for radiation now. Not really a contender for living. Let’s see if you can make Christmas. No, he didn’t say that, but he did say “we always knew Julia that we can’t make this go away, we are only trying to chase it away for as long as we can”. And he shook his head sadly, very much giving me the impression that we can’t do it for much longer. I’m not knocking him, we had a rocky start as I felt he wrote me off too quickly, but over the years we have reached a really good place. He got me to have SIRT, and I did live on the hope of the good work it was doing for a while. He did find me that amazing radiation oncologist, and I lived on the hope of his talk of controlling my lung tumours for a few years. If SIRT could do the same to my liver……
I’ve fallen at the final hurdle, again. For 13 months we fought to get me that liver resection, something that ended up becoming the most unlikely thing. I had to jump so many hurdles and nobody believed I could, but I got ALL THE WAY TO THE OPERATING TABLE. Then I fell. I had SIRT, it worked, I saw the radiation oncologist, I planned a long chemo break, and stable cancer in two organs, and a much longer life than I thought I was going to have, and I lived large on the hope that offered. I got all the way to the “last” chemo session, that “good” scan I was going to have, the next step would have been the lung radiation….I FUCKING FELL AT THE FINAL HURDLE AGAIN. I remember saying to Gaz when the whole SIRT thing came up, “I am so scared to hope again”. And I was. But I also remember writing about how hope of the liver resection gave me a much more normal life until the day I couldn’t have it, and I have to say that these last few two months have been good too, as I believed so hard. By christ it’s a long way to fall when you see that shake of the head, though.
I don’t know how I am still doing life and staying sane. Honestly this time, I don’t know how I am. I am facing my greatest fear, third line, LAST line chemo, with nothing much available to follow it. Weekly visits to the unit that I am seriously struggling with bi’weekly visits to. No break. No Thailand. I was going to be in the city at Births, Deaths and Marriages getting my birth certificate and applying for an urgent passport, I was going 1st of May…only a few weeks away. My oncologist said everything had to be stable, and it’s not. Also, despite him saying that he doesn’t believe the radiation oncologist will offer me any treatment now, I begged him to ring him, and to his credit he must have put my case forward pretty strongly, as the radiation oncologists receptionist rang me the very next morning with an appointment to see him next Monday. I don’t know if he has made it just to show me the courtesy of telling me personally that there is nothing he can really do now, but I hope not. I’m willing to beg. Conventional medicine is failing me, chemo is failing me, I need someone to take an aggressive and innovative approach, or I might not be in the audience for Indi’s graduation at the end of the year. And I just bloody have to be. All the people you read about who survive stage 4 cancer longer than anyone else seem to be the ones who chase the treatments, anywhere they have to go. So, that’s what we’ll do.
Physically, I feel fine. I know my breathing is worse, but the doctors would tell me that there is no reason for that, that the lung mets are not big enough to be causing this yet, but I know it is. My liver….well, there has always been some pain in my liver, for all the years I have been diagnosed, and I certainly still have that from time to time. For the last couple of months, it hasn’t scared me, as I have been sure it has just been SIRT attacking the tumours and giving me a bit of curry at the same time. Now, every pain is panic. I still feel better in that area, more energetic in general, my eyes are white, my skin is clear, I am actually hanging onto this tiny hope that the sirt IS still working, and it is just my lungs taking off and causing this number spike. The creeping up liver function tests don’t really bear this out though. How can they have been normal three weeks ago? How can things turn around so quick? Unfortunately, my oncologist says it happens all the time. So, I am being gentle with myself, taking regular (just off the shelf stuff, nothing strong) pain relief to try and keep any liver pain at bay. Doing small things often to try and not get too out of breath. For the first time I am using the blue drops that palliative care gave me over a year ago to stave off panic, nightly. I keep my days busy and fun, and grounded in the reality of my life. That there is still washing, and dishes, and kids to get back to school, food to buy, shoes to find that were lost before the holidays. It’s like I feel if I keep walking through my normal days, it can’t catch me. And at night, I lay down, and I take my drops, and I breathe and try and bring myself back to the present moment, and usually, I can sleep, without the demons chasing me through all the dark hours.
I think I have become a lot more “spiritual” since all this cancer business happened. I used to be the most pragmatic person and thought that it was all bullshit. But since diagnosis, I have become more aware of things that I have thought in the past, and the connection they have with what is happening to me now. There are some things I am reluctant to take on board, such as the pain that I held from my years of sexual abuse somehow built up in me and caused me to get cancer, because I didn’t resolve it. That’s too much like blaming the victim to me, and I am not going to do that to myself. However, I often think about something I told a very good friend a year or so ago….I don’t know if I have spoken about it on the blog before, as I am aware that it would sound somewhat insane to some people, but here goes. I said to him that when I was in my late teens, I always knew that I would not live a long life. He was interested in this and wanted to know why. I said it was because life felt so unbearable to me then, but I never wanted to commit suicide or anything like that…just this revelation that my life was not going to be a very long one was enough comfort….that there would be a limit on how long I would have to endure it. It does, even to me, seem that I predicted my own fate that day. But I said to the same friend, some months later, what if you change your MIND? What if you realised that you had been living, not enduring, and you wanted to keep on doing it. I’VE CHANGED MY MIND UNIVERSE! Can you re-write it? I don’t know. Am I going to be the person whose cancer just got too aggressive, and pretty much dies on schedule (what’s with another Christmas deadline?) Or am I going to be the person who can come back on this blog and say to all the people out there who are looking for hope, LOOK, I dodged another bloody bullet, you can do it TOO! I hope the latter, I hope it with everything I have.
‘Til next time. With love and hope to everyone who needs it, INCLUDING ME!