Posted on April 13, 2016
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!
This week and next are big weeks. Tuesday I go in for what I hope will be my last chemo for a while. The following week, I have a scan to see if this can be so. There is a bit at stake with this scan, well all of them really, but this one comes with the added “I’ll have a complete freaking nervous breakdown if I don’t have a chemo break” kicker.
If the liver looks better (it scares me that I think it will, my liver function tests have improved every single time since I had SIRT, until last time they were NORMAL), smaller tumours etc, lower cancer blood markers (these had dropped massively last time they were checked about 6 weeks ago…down HUNDREDS), then I will proceed to the much anticipated lung radiation. Considering how effective it could be, there will be little trauma involved, a work up, some metal thingies placed around the tumours so that the radiation can’t go outside the tumour field when I breathe (something like that), and then five straight days to The Alfred for a very short time to get the actual radiation done. The DR said to me that this will be probably the least traumatic thing I have done so far, with very few side effects. In stage 4 cancer world, you don’t hear that much, I can tell you! It can of course, go another way. If I have one single other tumour, the radiation is off the table. If my cancer markers have risen at all, the radiation is off the table. I usually go into these things in major self preservation mode, sure that it will all turn to shit, so it does scare me that this time I feel so much better that I am pretty sure they won’t. Don’t let this be the time my instincts totally fail me, as I am not in the least bit prepared for this.
Onto other things I have been overthinking (I’d given the otherthinking shit up for a time, but it’s well installed again at the moment) is whether this blog is a negative and difficult place for some people to visit. I speak of course of my fellow bowel and other cancer sufferers, who things don’t go for the way they are currently going for me. I have always been so pleased that this can be a place of hope for others who start out very poorly at diagnosis. I can be a realistic example of what can happen, I was COMPLETELY written off at diagnosis, my maximum two years was up in December, and I am going pretty strong for someone in my position, I really am. I still sleep through a day or two a fortnight, and I have collatoral damage issues (only having a very small amount of bowel left does come with it’s discomfort, as you can imagine), and attacks of quite violent liver pain, but I just have to work through it, and it goes. The actual cancer (despite the liver pain I guess), doesn’t cause me any issues at the moment. I know everyone is realistic enough to know that I have stage 4, currently incurable cancer, and once these measures stop working, and I run out of chemo options, the outcome won’t be a happy one, unless there is some really awesome immunotherapy trial that I can get on (and this is what I am very much hoping for). I know that when I was diagnosed, I would have searched and hoped to find something like this blog, where I could realise that things don’t always turn out how the doctors think they will, to have anything that would give me hope. But how cruel for those whose attempts at gaining more time are thwarted at every turn. Nothing works for them, it all works for me, at the moment, anyway. A friend of mine says I have “survivor guilt”, and for my own mental health I must let this go, but it’s not survivor guilt I don’t think, but white hot fucking rage as to why they can’t work out why this is so, so everyone can have successful, life extending, hope gaining treatment. I am living a life more ordinary, and it’s all I wanted (for the time being anyway). I can almost always take my kids to school, pick them up, put a meal on the table, and I am taking more stress of Gaz in every way that he can – I am proud to say that he hasn’t missed a Saturday golf game all year because I have been too sick for him to go. It’s his outlet, the only time he doesn’t think of it, he says, so this means a lot. I want this for everyone. EVERYONE.
I am very excited about going to Thailand at the beginning of next month….something many people helped make happen for me. It sounds really strange, but one of my first thoughts when I was diagnosed was “I’ll never go overseas again”. It will be a triumph to walk through those “International” gates. And I know that I will come back refreshed and ready to do all the things I want to do.
Ever since I started going to chemo I was saying to mates that if I was cured (liver resection still on the table then, of course), then I would pretty much devote the majority of my time when the kids were at school etc, finding gaps in the lives of people with cancer, and working out how to fill them. One thing that really upset me was the amount of people that came to chemo alone, especially the elderly, who arrived in veterans taxi’s, or patient transport, and left in it, alone, and unlikely to have anyone fix them dinner when they get home, after horrific, rigorous and scary treatment. I want to somehow work out how to match up a volunteer to these people, to sit with them and have a chat and maybe cook them a meal to have that night. It seems so simple…there are so many lonely people out there, and others who want to do something to help people, but I honestly have no idea how to make these matches happen. Any ideas? I’m going to start with myself, I am going to match myself to someone reasonably local and do this for them, but I honestly don’t know where to go from here.
The other one is the wish granting charity that a friend and I want to set up in my name. It will be a little different than others, in that it will be for mums who are terminally ill to have a special memory with their children. I don’t know exactly how it will go, but my friend has already started some groundwork, and it is going to take a bit of setting up, needing lawyers, a committee of people who don’t know each other, much much paperwork. I don’t want to crowd fund anything, this is my way of giving back to people what has been given to me. We are thinking of starting out with a benefit concert, but where do we look for funds after that is exhausted? Philantrophic trusts? Private companies? Grants? If you have any knowledge of this stuff, please contact me. I really want to get moving on it as soon as I get this radiation over with and get back from Thailand, so I want to be armed with as much knowledge as I can.
See you after the post chemo craptacular. Cross everything for me it is the last for a while, please xx
Love and hope to all who need it.
Gazbo and I have similar “personalities” when it comes to holidays that require air travel with four children. We book them, with hope in our heart, and while we always feel glad we went, we generally bicker non-stop, with each other and the children, and slowly lose the will to live as they (like millions of children before them), whinge their way through a holiday and we have scrimped and saved for in the hope that they, and we, will have a good time. We always say we will never do it again! And we always do, like the true believers that we are.
This time we had very high hopes it would be different, and my word, it WAS. This time we were staying with great friends, with a couple of kids of similar ages for them to play with thrown in for good measure. They generously gave us the run of their home and use of a car, and we spent a bit of time in Brisbane, and the rest at their families stunning horse breeding property, Yarramalong, in Aratula. There was bubbly, lots of it, fun, frivolity, eating, more drinking, resting, laughing, several nights where I stayed up until 3 or 4am, which is unheard of for me nowadays. There was very little thought, or talk, about cancer. And apart from the very odd crack at each other that lasted a couple of minutes, Gaz and I didn’t argue at all. This bloody holiday knocked it out of the park, and in many ways was the best that we had ever had.
The Watson’s do, however, like to leave the best until last.
So, last night we were back in Brisbane for our last night. Ange and I went to see a movie (The Lady in the Van, omg, see it), and when we got back we were having a quiet drink on the deck when Dakota declared that there had been a cane toad spotted in the house. All the colour drained from my face at that point, as despite never having clapped eyes on a cane toad (well, not at that point my friends), I am truly phobic about them. I can’t watch anything on TV about them, look at pictures of them, or even talk about them without feeling sick. Our host Paul assured us that it had been shown the door and seen to go outside, so I bit down my panic, and Gaz and I wandered off to bed. He, and I did a good inspection of the bathroom before I would go to the toilet and brush my teeth, and all seemed to be well. I kept hearing Cane toady like noises, but I knew it was my imagination as I knew one had been inside.
Fast forward to about 4am. I get up, stumble half asleep to the loo. Upon finishing, I open the door, and standing at the other side of the doorway, waiting patiently to come in, was a huge mother effing cane toad. I did what every self respecting cane toad phobic would do, and screamed bloody murder, and slammed the door, yelling for Gaz to come, whilst at the same time begging no one to open the bathroom door. Really, I would have stayed there forever if necessary, with the door between me and it. Chaos ensued, as I heard this almighty crash, which as it turns out was Gaz knocking over the pedestal fan that was next to our bed. Then there was a big OWWWWW, which was him slamming his shoulder into the door frame in his haste to get to me, as he thought an actual person was in the house attacking me. At some stage he also hit his toe, which may be broken, we don’t know, it’s a pretty nasty colour.
Gaz opened the back door for the offending creature, and it hopped cheerfully out, at which point I finally exited the bathroom, shaking, crying, snot, hyperventilating. Between him and the children who had also woken up during the festivities, I was finally convinced to go back to bed, where I held onto my injured husband for dear life for the rest of the night, constantly swinging between apologising to him for him hurting himself due to me carrying on over a toad, and saying “but it was back on it’s haunches, ready to strike!”. I don’t know if toads have haunches, but this bastard was looking at me with INTENT.
Still, that was the only “low” ish point in the whole holiday, and we were pretty pleased with ourselves. We were dropped off at the airport by our friend, and we checked in 6 pieces of luggage, a carseat and pram in record time, and I even got through security for the first time in 14 years without my hips setting off the metal detectors. We were on FIRE.
When we got on the plane, I was seated in aisle 11 with Indi and Tana, and Gaz was on the opposite side in aisle 12 with Georgie and Dakota. We were festive, happy to be heading back to our lovely home and our much loved dog. I leaned forward so I could look at Gaz with a sunny smile, and I am pretty sure we were mentally high fiving each other over how well we had done.
But, by christ, the Watson’s weren’t finished yet. Not by a LONG shot people.
I was having a lovely read of a new book when I started to feel sleepy. I could fall asleep, standing up, in the middle of a freeway nowadays, so I decided to have 40 winks. I probably had three winks when I was woken up by Dakota saying “mum, Georgia has poo’d and it’s everywhere.” She is not one to exaggerate. I leaned forward to look at Gaz again, with much trepidation this time, to see him frantically looking at me, for all the world like he wished he had never been born. Next to him was Georgia.
So, just imagine Mt Vesuvius. It erupts, slowly at first, but then it picks up speed as the lava moves down the mountain. That was fairly similar to what was happening in Georgia’s shorts. I frantically reached into the nappy bag for the wipes and threw them over to him, and then reached back in there for the nappy that I knew was in there, as I had put in two, and only used one.
THERE WAS NO NAPPY IN THE BAG.
Georgia is at this stage the captive audience to all the flight attendants on the plane. There is serious concern about how we are going to get her to the back of the plane to get her cleaned up, as she is literally COVERED in shit, and so is the seat and belt. One flight attendant suggests that if we don’t mind, it might be an idea to put her in a bag to transfer her to the back, so as not to get shit all over everyone, including the other passengers. We agree as though putting our child in a plastic bag is something that we do every day. She returns with a bag and he lifts Georgia up and drops her in it. I am not sure I will ever forget the sight of my husband fanging it down the middle aisle of the plane with our daughter encased in a blue plastic bag, with the words “hazardous waste” written on it.
I follow down to the back of the plane, trying not to look at anyone, but seeing them all cover their noses. One lady remarked loudly that she was glad that this incident occurred after she had eaten her lunch. Gaz was squeezed into a cubicle with Georgia on a change table big enough for a newborn baby, but perhaps not an 8 year old, small though she is. While his filling half a bag with paper towel covered with crap, the queue starts to form for the other toilet. One lady goes in happily, seemingly unaware of the festivities going on over the way, and emerges 2 minutes later, with a hanky over her nose and mouth, dry retching. Then, bugger me if this bloke doesn’t wander into a scene that smells roughly like your local shit farm on steroids, and demand that the flight attendants fetch him a glass of wine, which he had apparently asked for before the Watson’s became the unofficial wine police.
Thankfully Georgia wears nappies suitable for a 2 or three year old and someone was able to furnish us with one from their supply. Seriously, what mother who has been changing nappies for 12 years doesn’t have a nappy? One of them MUST have fell out, I swear there were two in there.
But do you know what? Maybe we are getting better at this shit (pun intended). All was well that ended well, and in the car on the way home from the airport, I became lost in uncontrollable mirth about the baby in the bag incident, and the woman who nearly lost her lunch, and the guy who wanted a glass of wine so badly he was willing to step into hell to get it. We laughed until we CRIED. We’ll holiday again, my word we will. True believers, that’s us. Next time though, we might take some valium, and a SHITLOAD of nappies!
I’ll leave you with some photos from Yarramalong:
Well, it’s not 45 quite yet, and I probably should hang on to 44 as long as I can, eh? But ah, what’s a few days between friends?
As you all know, this was the birthday I was not supposed to have. My 44th birthday party, as I think I have mentioned before, involved several visits from palliative care in the week leading up to it, 2 on the actual DAY of my party, including leaving the last of my guests at 1am to get tucked into bed by the nurse and another of her syringes. It was pretty shithouse, everyone thought they were saying goodbye (including me), and someone even referred to it as a birthday wake. They weren’t wrong.
Yesterday, I told my assembled family and friends a rather astonishing tale. A tale about how I have been on slow release opiate medication for about the last six months, to control moderate and persistent liver pain. About how in the last couple of weeks I have completely come off that daily slow release oxycontin. We’ve still got endone on hand for “attacks”, but I am more likely to reach for the nurofen. If I know anything, it’s that as you move further through the months and years with stage 4 cancer, you don’t really expect to get “better”, and yet I am so much more well within myself today than I was this time a year ago, it is quite hard to put it into words. I will always be grateful…stunned…..amazed, overjoyed.
Known this great friend for over 20 years now, and his wife Ruth, who is definitely one of the nicest people on the planet for nearly as long:
I worked out that I celebrated my 25th birthday in the private room at the back of Tolarno, the St Kilda restaurant that Huey owned at the time. Yep, used to prop the bar up there quite a bit. Yesterday, I celebrated my 45th with Huey and Ruth and a bunch of my friends and family at Big Hueys Diner, their more recent venture. It’s our favourite place to go and they are two of our fave people, so it seemed fitting.
It was SUCH a special day, and one of incredible triumph over the odds….something well and truly worth celebrating. I had a little more to drink than I have had since I was diagnosed, and this morning I could finally say the fateful words that I have missed (or not)…”I’m never drinking again!” What was so breathtaking was the amount of love in the room for me. My friend Bekkii and her band were playing, and she played Songbird for Gaz as I asked her to, but the bugger made up get up and dance! Neither of us are dancers, but it was a special moment, and a great giggle when I was holding Gaz and he was looking over my shoulder, and he said “if you just keep me in this position, I can keep watching the Grand Prix”! Ahh, a hopeless romantic. Then Bekkii got me up to stand with her and snuggled me as she sang Eva Cassidy’s “I know you by heart” to me. She sang the same song for me the day we met There were lots of teary moments from pretty much everyone involved over the course of the day, but they were good tears, happy tears. I looked around at all those who were there because they loved me, and of course my family always has, but for many years I had few friends, because I kept people at arms length. It pays dividends to open your heart to people, because for the most part they are good. Sure, you risk getting hurt, but the benefits outweigh any of the risks, and you will likely find yourself richly rewarded. Try it
I feel the best I have in weeks today, physically and mentally. I have got a bit done around the house, started thinking about packing for QLD, as we leave on Wednesday for a week and I haven’t done anything!
I got these flowers yesterday for my birthday:
For some reason they seem like a metaphor for the way I want my life to be focused on from now one. Focus on what is beautiful in life, add more beauty to life, really really try not to let the small things get me down. The biggest beauty in my life, my Gaz, my girls, my pug, my lovely bright home. But definitely talking literally as well as metaphorically. I can’t afford to be buying fresh flowers all the time, I am sure most of us can’t, but bugger it, if there is a nice looking bunch on clearance at Woolies, I’m going to grab them and whack them in a vase! You should too – we’re worth it. And when we tell ourselves that, and show ourselves that, we instantly brighten in most cases.
The day started out a little sad. My friend Danni came and got the kids as I was super tired this morning after only getting about an hours sleep. I asked all the kids if they were ready for when she arrived to get them and they assured me that they were. Then she got here, and they all started running around getting things, they weren’t ready at all. Indi spoke to me in a way that I didn’t really like on limited sleep, and I lost my shit and yelled at her. I felt so bad about it, my reaction was an over-reaction, and she was so sad. Luckily I was able to get her on Danni’s mobile before she got to school and apologise to her, and she was fine. I know we all fuck up from time to time, but I don’t want this to be their memories of me, shouting at them. I can’t blame this on cancer, it is my personality, I am reactive, quick to anger, quick to get over it, then the guilt trip starts. Any tips on doing better? I’d love to hear them.
Love and hope to all who need it, I know a lot of my friends are doing it so tough at the moment and you are all in my heart.
I have never known tiredness like this.
It’s a confusing trip when the very thing that is responsible for giving you a much extended life is sucking the life out of you. I speak, of course, of chemotherapy. I spoke to my oncologist last week about how my tiredness really seems to be increasing to a frightening level, even though my general cancer health is in a pretty good, stable place, with excellent liver functions at last blood test (basically you wouldn’t know from the blood tests that I had any liver cancer). He pointed out that I was just about to have chemo number THIRTY, and that is a lot of chemo, it accumulates, and he seemed to indicate that he didn’t think it was going to get better either. He said what a lot of people say I guess…that I have been a bit of a machine the last couple of years, and it was only a matter of time before the tide turned, and he was amazed I was able to function at the level that I did for so long.
I’ve toned things way down, because I have had to. But take yesterday for example. I decided to get into celebration mode for the week ahead, as I have been a bit down and looking for ways to pull myself out of it. So, I went to the shopping centre and took myself out for coffee and breakfast. I got a couple of things, came home, slept for 20 minutes, had friends over for coffee, slept for two hours until school run time, came home, got the kids a snack, slept for an hour, and then went into town to go and see a play with a friend. Gaz and the kids drove me in and they went for dinner, I joined them after the play, for dessert and coffee. None of that sounds particularly taxing, eh? All I am doing is sitting, talking to people, enjoying peoples company, which is important to me. But no, like I had run the Boston marathon, I slept in the car most of the way home. I don’t actually remember getting from the car to the bed, I remember Gaz waking me up in the car and saying we were home, and I stumbled inside, I think I pulled off my cardigan, but not any jewellery, and sort of fell face down on the bed like I had fallen out of a plane into a field. I slept until about 8.30am this morning and yet, I feel like I haven’t been to sleep – not rested AT ALL.
I know I have told you all of the dream that I have now. I am going to have one more chemo on April 4th I think it is, then we are hoping for a good scan that indicates that I can have the lung radiation and go on a chemo break for as long as possible – until we have signs of active growing cancer, basically.
I don’t know what I thought was going to happen at this time. Like I was going to just vault out of there and get on with life, do ALL THE THINGS. The way things are going, clearly I am not. I feel like I have cleared out the “dead weight” in my life already…..I have pared it right back to basics, already. My family, my friends, spending time with people I love. Trying desperately to take some of the pressure off Gaz, just be a partner and mum and friend again. That’s about all I got, but they are the most important things.
Don’t even doubt that I am grateful to be alive. I am grateful every day for still being here, and long may it continue. It’s just HARD is all, when you know your life is going to be short, and you desperately want to live and party like it’s 1999, and you realise you can’t, and never will be able to again. it’s kicking my arse.
I have so much compassion for those of you that have chronic health conditions that have meant that you have had to live and parent around this sort of tiredness for years and years. How have you done it? Anyone got any tips for me? Can anyone tell me that when I go on chemo break this might get a bit better, that I might be able to do a bit more? I am up for any advice, or kicks up the arse, whatever you feel I need.
Tomorrow we are heading into Huey’s diner to join a bunch of family and friends, to celebrate and give thanks for the fact that I will turn 45 on Good Friday. I’m so excited, and only hope I don’t have to crawl into one of the booths for a sleep!