Posted on February 18, 2016
Just a bit of rhyming slang with good old Dr Suess there in the title!
Yesterday Team Jules gained another specialist doctor to add to a very impressive list. I am a candidate for the lung radiation, and the doctor was more than happy to do it, however, he thinks I don’t need it yet! It wasn’t really what I was expecting to hear. For a start I thought I would have to beg him to treat me, I thought my liver might be just too bad to consider me, despite it being well controlled at the moment by the treatment I had before Christmas. But no, he was more than happy, and even spoke of looking at my liver tumours down the track and seeing if there is anything he can offer for that as well, though he did realistically point out that they are large, and not well defined. I just really liked him…he kept saying the words “years” and “me” in the same sentence. I finally said to him that no one actually speaks those words in the same sentence. He shrugged and said that based on what he saw, and the potential for new treatment that he couldn’t see any reason why I couldn’t live one year, two years, maybe more. Of course it could also realistically turn to shit in five minutes flat, but I would rather measure things in groups of 365 days. So, the lung tumours are tiny, he showed me them on the scans and they really are small, so his advice was to wait until they started taking off a bit and then he will treat them straight away. He also offered me the chance to choose, and if my mental health could not cope with them still being there and waiting for the tide to turn, then he could also do them straight away.
Fact is, I need a chemo break – badly. It is weighing heavily on me mentally, I have had 25 cycles now, and although I cope very well physically, I am starting to get so, so tired. Body tired, and mind tired. The SIRT has made me better, there is no question about it, the improvement in my liver function has meant that when I have good days, they are literally better than they have been in more than 12 months..in fact, sometimes I think better than before I was diagnosed. I knew the treatment had worked before the scan, and I think I will know when it stops working too, so if I could also get the lungs controlled, I could just breathe again for a little while. So, the new doctor called my oncologist, my oncologist called me, and we decided to wait until the next scan in 5 weeks, and make sure the liver is really behaving like we expect it to be, and if so, we will get me in for the lung treatment (very low risk and due to the high doses, over in the space of a few days), and I will jump off the chemo train for a while and see what happens. What I want to do to that cock bottle when connected to it would come with an offensive language warning that might even shock my blog readers, so I will leave it up to your imagination. To add to this, while I am full of energy on good days, I now spend approximately 3 days per fortnight asleep from when I get home from the school run, until I leave to pick them up again. It’s too much. Too many hours I can’t wrest any quality out of, and to a woman running out of time that weighs heavily. I will start to go downhill in the noggin on Sunday night, knowing I am going in for chemo on Tuesday, and that sucks yet more quality from my life. I will be ok now I know I have something to work towards, five weeks, two more cycles…..sweet relief for a while I hope….a normal life for a while, that is all I ask for at the moment, and at this stage of my life, much more than I thought I was ever going to get. I am weary, but grateful.
Naturally a lot of people want to know about this therapy and whether it is suitable for them, and I urge you to find out. If my oncologist had not found it, I would never have known about it. It is certainly not for everybody, in fact not even for a lot of people, but for the people it is a match for, it is a very promising time adder. So, to make it easier for people who want to know more about it, it is called SBRT (Stereotatic Body Radiation Therapy). Google it, have a read, ask your oncologist about it, and if it is suitable you can ask for a referral, it’s available in several states. It is of particular interest to those with spreads of colorectal cancer to the LUNGS, if tumours are not too numerous (but that is up to the doctors to advise, not me). I hope this helps someone.
So much crazy fun for me today! My friend and editor who publishes a lot of my writing on Essential Baby, was unable to attend a product launch here in Melbourne and I was lucky enough to get the opportunity to go in her place. It was a lunch with Lleyton and Bec Hewitt, who are brand ambassadors for the Hans Oliving range (smallgoods with olive oil to make them healthier, you have probably seen the tv ads). It was really lovely, especially just sitting around talking to other writers and journalists, while we waited for our interview slots with Lleyton and Bec. I thought how this was a crazy magic (sometimes almost tragic), awful beautiful life. Those are the lyrics of a country song in case you are wondering. When Gaz and I met and he said he was into country music, it was almost a deal breaker, but now I am more of a fan than he is. Anyways, it is THAT kind of life, still a life worth living, around the shit. ALWAYS a life worth living. I’ll keep on fighting for it, forever, but I just need a break, I need to breathe for a while. So folks, one day you can be consulting specialist about trying to stay alive, and the next day interviewing the Hewitts. They were absolutely charming by the way, here is yours truly getting her photo taken with them after the interview.
And what of this guy, here with me yesterday after our very positive appointment:
He’s not a big one for smiling in photo’s, but he’s happy, honest I love him so much, I couldn’t do this bullshit without him. When I saw, out of the corner of my eye, the fall of his shoulders yesterday as he heard the doctor agree to treat me, makes me realise how bloody stressed we are most of the time…holding our breath until someone tells us it is ok to exhale again for a while. Valentines Day (which neither of us acknowledge in any way) was spent in Costco, and we had a rip snorter of a fight on the way there. It was my fault, he said something that set me off and I went completely mental at him. It is the sort of fight that you are very ashamed afterwards that you had in front of your children, and I apologised to them for having to see it. It’s not cool, but it’s life I guess, well, it’s my life, you do things you aren’t proud of, you say sorry, you have to move on. After 16 years, I am glad we have the fallback position of genuinely loving each other. it’s probably the only reason that this hasn’t put an end to us, and both of us can understand how many marriages don’t survive this chronic / terminal illness business. I’ll fight for him forever too. We had respite (care for our children for four hours fortnightly, due to Georgia’s Down syndrome) on Tuesday night and we went to a restaurant in St Kilda. We were edgy (as the appointment was the next morning), but happy. We were outside the restaurant, and I walked towards him, and he quickly snapped this picture:
I popped it up on Facebook, and quite a few people were struck by it and said how obvious it was that I was looking at the man I loved, and it was very quick, very natural, not contrived. Even I can see it. So, I think we’ll be alright – we have to be.
Just to keep it real for you all, after my glamourous day with Lleyton and Bec…I was on the way there in the car, and my stomach was making the most awful noises. Not since I penned the post “Let me sing you the song of my people” (whack it into the search engine if you haven’t read it and would like to) were things QUITE so noisy. If you think of a volcano erupting, but quieter, but not much quieter, then you would be close. I was like WHY NOW? And what if it doesn’t shut up while I have a private audience with that lovely pair. Thankfully by the time I got there, the festivities appeared to be over, but it certainly puts one in ones place if they think hobnobbing with celebs puts them above the station of the common folk!
Til next time, much love and hope to anyone who needs it xx
My teenage tormentor had me pinned up against the red brick wall near the quadrangle. So close to me, I felt his spit hit my face, as he demanded to know what the point of me was. I was fat, he said. Ugly. Stupid. Invisible, yet taking up too much space.
As he walked away, and I wiped the stain of his hate from my face, I saw the self-satisfied smirk that showed that taking something from me built something in him. I never defended myself, never said a word, after all I didn’t have the answers for him. I’d often wondered myself, as I had learned years before that people like me didn’t inherit the earth. That was the domain of the smart, the funny, the attractive, the powerful – even if that power was “earned” from taking from the weak. It was the domain of the jocks, the artistic, the ones whose mums were active on the parents committee, or whose dads coached the local football team. It wasn’t for people that had nothing to set them apart but awkwardness. Someone who didn’t wear the latest fashions or listen to the latest music. Someone who definitely didn’t chase the boys. How could they understand that I wasn’t a teenager aching to stumble through my first awkward sexual experience, because I had already known the intimate touch of a predator at the age of 6. If there was a point of me, I didn’t know what it was either.
Years later, I was still wondering. I’d put four children on this earth, and I knew the love of a good man. I’d had a successful career, travelled the world, and counted a few lovely people as friends. I no longer spent a lot of time questioning my worth, the voices were quieter, but I was soon to know that these things stay with you, until some giant fuck up, or some cosmic twist of fate brings them screaming back from where you think you’ve buried them.
They’d never screamed louder than the interminable days and weeks after the doctors told me that my days on this earth were not going to number many. I surveyed all that was before me, and I wondered what the fuck I was thinking, what on earth possessed me to think that I would be able to have anything good, anything beautiful, and get to keep it. Selfishly, I couldn’t think that they would be glad that I had gave them life, that Gaz would always be glad he loved me, and I loved him. Instead, I wished them all into non-existence. I thought only of the carnage I would leave behind me. Four children who would grow up without the love of a mother. A broken man who had no love to hold his hand at the end of his days. All because, in a moment of madness, I entertained the possibility that there might be a point to me.
I can’t exactly put my finger on when the shift started. It might have been witnessing the raw grief of those in my circle. The ones that said they would fight for me, stand beside me, hold me up when I knew I was falling, never let me go. Maybe if I could move people that much, there was a point to me after all.
And what of those four children? Dakota is 12, and blessed with a self-possession that I have never known. Everything is effortless for her, or so it seems. Making friends, excelling at school and sport. She does it all with a humility that draws people to her, as they know that she never thinks she is better than they are. Indi is 11. She is FUNNY, she has us in stitches constantly with her quick wit. She is also incredibly fair. Once she was helping me clean out the car and she found two dodgy squares of chocolate on the back floor of the car. I brushed them off, declared them safe to consume, and told her to eat them and not tell the others. She battled with her conscience for a short time, then snapped them in half and took them in to the others. They got a piece each and she didn’t get any at all. What an absolutely magnificent human being. Tana is 9, and she is the most like me. She’s always struggled to make friends, she hunted desperately for a besty in prep, but they were all taken. This made her sad for years, and all I could do was hold her and tell her that it was like that for me, too, but look at all the friends I had now. She struggles a bit to know what makes her special, what sets her apart, but she is gaining confidence as she grows. A couple of years ago, a new girl came to school, an opportunity she seized, to have someone of her very own. She loves that friend with a singular devotion and enriches both of their lives. Georgia is 7. The great gift that came with her Down syndrome is a simple and pure heart that never wonders about her place in the world. She simply exists at the heart of our family and knows she is loved for exactly who she is.
I tell them I love them all the time, and I tell them they are beautiful. Yes, their bodies are beautiful, in whatever form they come, but what really makes them beautiful is the things that set them apart. I tell them that we all have something that makes us amazing, sometimes it is something obvious, sometimes it is something that we have to look a little harder for, but it’s there. I tell them they were born into a world that values difference and quirkiness in a way that the world that I was born into never did.
Maybe the point of me is so that they never have to wonder what the point of them is.
And what of my beautiful man. I can honestly say he has never questioned my worth, but to my mind the biggest point of me to him was on a cold September night in 2003, when he rang his sister Robbie and sobbed into the phone “I’m a father Rob. I’m a FATHER”.
Perhaps the biggest shift came the day that I was literally on my knees. Cancer had broken me open, laid me bare, exposed me emotionally in a way that I had never been before. Normally I would have kept that part of myself hidden – something that it becomes easy to do when your scars are worn on the inside, not the outside. But in one split second, I decided not to do that, I was going to let the box stay open. I was going to write about all of it, the pain the fear, the brokenness.
I often wonder if fate already knew what was in store for me the day I was held up against that red brick wall. Never could I imagine that one day 10’s of thousands of people would read those words. That the number of messages that I received about them now literally numbers in the 1,000’s. That people would say that the broken part of me had touched the broken part of them and made it…better. Thank you, thank you, thank you, for the fact that I never wonder now about the point of me.
We all create ripples….we all make the world a different place with our existence in it. If you ever wondered what the point of you is – don’t. Just as I tell my girls, I want you all to know that you all have something special, and you have all changed the lives of someone, for the better. Don’t wonder for as long as I did, what your ripples are. Think about it, even for a short time, and you will find them – I promise.
Me and my quirky, beautiful people
I once wrote about the land of Topsy Turvy, a land you could visit at the top of the Faraway Tree, or in the Wishing Chair…beloved books from my childhood. I likened living with cancer to having to learn to walk around on your hands. You get used to it in time, but there are always times it is going to be a terrible inconvenience.
So, I am up in the land of Do As You Please, and I’m getting a look at it, but not quite getting to play there yet. I had another incident of the acute, what I thought was liver pain on Sunday night, two weeks after festivities of a similar manner, but this time it was so bad I had to go to hospital, as I also had to accept that it is not an isolated thing, and we have to find out what it is. They got my pain under control, and I spoke to my oncologist who thinks it isn’t my liver at all, but pancreatitis, or gastritis (stomach ulcers), probably caused by some rogue SIRT beads ending up where they shouldn’t have. It’s not a huge deal, I have to have some more invasive tests though, and I am sick of the medicalisation of my life. The port removal will be one procedure, putting the other one in and taking the picc out another procedure, this gastroscopy yet another one, still chemo every two weeks. I know what would fucking please me, and that would be leaving this nightmare behind, but it’s not going to happen, and because I have the perspective that comes with the good SIRT results, I haven’t dropped my bundle mentally this time, I just think of it as another thing I have to get through to get to the lung therapy I so badly want. And on that note, right just then I got a call from the specialists rooms, I have an appointment next Wednesday! Now just to get him to treat me and I will be one happy, happy camper
I HAVE been doing a lot of pleasing things. I have been managing the school runs mostly by myself, cooking SOME of the time, not quite as often as I intended yet, but the other night two of the kids cooked dinner pretty much all by themselves, they just had to get their dad to get the meat into and out of the hot pan. That was pleasing stuff, to see not only do I love the new kitchen, but so do they, and it’s changing the way we live. I have entertained friends around the table 2 times, which would pretty much be two times more than I have done it before in my old and uninspiring area. I had told the kids we are getting into meditation every night and I can tell you that that hasn’t started yet, we are too interesting in getting homework done, which has really stepped up this year, and watching MKR. And the dining table, well, sometimes it’s a place where you all eat, and other times it’s a place where you dump several baskets of clean washing, and sometimes, maybe a lot of the time, the children get dressed straight from it. You can’t have it all, right? Right?
Chemo yesterday and I feel foul, but it’s all good, I got to go and wave Dakota off on her first high school camp and drop the other girls off before I came back home to bed. Today I’ve done good, that’s enough. I’m going to lie here now and binge watch Orange is the new Black as I feel like I am missing out on something. I did watch about 15 minutes of it a few months back and then Netflix crashed and I moved on to something else. I do remember there were lots and lots of boobs….gotta love boobs.
Just on a final note, people often tell me I am brave, and I don’t really think I am, just doing what I have to do. But there are some things that I have worried a lot about that I have overcome and I am a bit proud of that. Joining palliative care was hard, but I have been in that program 18 months now and I am still not dead, and they are still the best people ever. They only need to come to me for a chat really though, and occasional call outs for morph when the liver bleeds or something. I have never had to GO THERE. Not that hospice, which I might have to go to…well…you know. Same place that I visited Gaz’s ex wife in many times in the lead up to her death from lung cancer 10 years ago. Imagine Gaz having to see two wives in and out of that place? I’m going to pull some miracle out of my arse, I swear, it just can’t happen. Anyways….what I am getting to here in a long winded way is that for two years I have managed to not drive past that hospice, even if it mans taking a long way to somewhere. But I knew that the day would come that I couldn’t avoid it any longer….it’s right opposite Dakota’s high school. So, I just drive on past every day, lalalalalala fingers in ears, it’s not MY PLACE, and I have no intentions of it being for a while. So yeah, I’m proud of that.
My friend Lou and I, lunching around my not laundry covered table the other day
Hello my darlings. For those who only read my blog and don’t have me on Facebook, I hope you don’t mind, I am just going to copy and paste here my Facebook status from yesterday, which explains the test result outcome and where I go next:
“OK, a bit more detail, sorry if it is too technical for those lucky enough not to have ever resided in cancer land. The four small tumours on my left hand side of my liver (including the pesky bastard that cost me the liver resection) are not currently able to be seen on CT scan. On the right hand side, which contains the two big tumours, they look unchanged on the surface, but a CT scan can only see the surface and these burrow very deep into my liver, so the oncologist suspects that they have melted away underneath and that in three months we can reasonably expect to see shrinkage on the surface area at next scan. Lungs are exactly the same, all under the centimetre they needed to be for me to get an appointment with the radiation oncologist. By far the biggest indication of whether SIRT is successful or not though is cancer markers in the blood. There are two types, one is just general cancer, the CEA. In December my CEA was 424, today it is 108. There is also a bowel cancer specific marker, the CA19.9. I can’t remember the specific numbers that he said for that one, but it was also in the 400’s in December and has dropped more than 50%. The SIRT has got a few more months of work left in it, and the oncologist said we can “reasonably expect these to drop further”. There is a referral going in to The Alfred this afternoon requesting the radiation oncologist to see me, and my oncologist expects that he will agree to see me, though there is no guarantee that he will agree to treat me at this point, seeing him is significant. He does a specific type of radiation called SBRT therapy on the lungs, it is very targeted, and by the bit of reading that I have done, his 3 year survival rate for those he has treated with primary lung cancer is 60%. I of course have liver cancer too, but this is pretty impressive technology if he will treat me. Now I just have to wait for an appointment, but my oncologist thinks it will be in the next few weeks. I don’t need to have another scan for three months, and he has dropped my appointments with him from fortnightly to monthly, as in his words we are “right on track”. Unless some weird and unexpected turnaround happens, I don’t have to worry about anything for THREE MONTHS. And in three months I can reasonably expect the results of the scan to be BETTER, not worse. I am going to have a bloody fantastic three months, you mark my words, somebody TRY AND STOP ME!!! Best place i have been in clinically with this cancer in a very long time.”
So, there you have it.
I woke up this morning and wondered if it was real. I never expected to be in this place again, a place where there was actually real hope of more time. There is no guarantee I will get this treatment, I have to meet with the radiation doctor and work through all the details. But let’s say it works out the way I want it to. SIRT has worked, and it can control liver tumours for YEARS. As for this SBRT lung treatment that I am hoping to have, it can control lung tumours for YEARS (or eliminate them). There is no doubt about the efficacy of the treatment. Chemo is still working to keep everything under control. You know what it means, don’t you?
JULES COULD LIVE FOR YEARS. YEARS!
A lot of doctors talk nowadays about how in some people, stage 4 cancer can be controlled for many years, and treated somewhat like a chronic illness. Sadly, for a majority of people that is not the case, I have had beautiful friends die over the last two years, who fought so hard, who tried EVERYTHING and literally couldn’t take a trick, nothing worked for them. To that end, I have been very lucky with my cancer so far. I have responded, and quite dramatically to every treatment I have so far been given. Even when we very scarily started losing ground mid last year, when I took a chemo break to go to QLD and everything started growing merrily the minute I was off the poison pump it seemed. It was the most scared I have been, I was in decline, I was in pain, I was exhausted and I doubted I would make Christmas. But, I came home, my oncologist changed my chemo drugs, and within a couple of cycles, I was back on track. Nothing shrinking, but some control, for a little while at least, I was going to get Christmas.
We sufferers of stage 4 cancer talk a lot about gaining time, precious time needed for the next.big.thing to come along. We talk about how they are developing new drugs all the time, and maybe they might be on time for us. We talk about whizz bang new treatments that might become a reality so we can punch out another few months or a year. I imagine sometimes people thing we are deluding ourselves, and realistically, for most of us who are already stage 4, there is not going to be a cure in our life time. But the hanging in there for the next time adder, this just goes to show how important it is.
When I was diagnosed, my oncologist talked to me about joining a SIRT trial. It was given in conjunction with chemo, and it was having really good results. But if I started any sort of treatment before signing to the trail I would be ineligable, so I had to make the decision right then and there. I wanted to hang onto the faint hope of a cure with the liver resection, so I had to let it go. After my veins and arteries were interfered with to try to get ready for the liver resection, that basically excluded me from SIRT and I was told chemo for life was all I had. And so, I just took the poison, knowing that I was waiting for the day that it would stop working and my oncologist would sadly shake his head, hand me over to palliative care and send me home to die. I’m sure you can imagine that this has not been an easy way to live.
Fast forward to the end of November, and my oncologist stuns me by saying hey, we are pretty much in control of this thing still, how about we try and get you a package deal of SIRT and, if it works, lung radiation. Don’t get your hopes up, he said, there are a million hoops to jump through first and you would have to be really lucky.
Here I am at the beginning of February REALLY LUCKY.
For the first time in a long time when it comes to this cancer I feel like we have kind of got the upper hand with it, like we are in control at the moment and not it. Unless something really weird happens, I am in no imminent danger of dying, in fact, I will likely improve further.
I woke up this morning with a feeling that I had emerged from the shadow of death. Unless there is another NEXT BIG THING after all this stops working, I know death will come for me far sooner than I had ever hoped, but it’s not coming for me now.
So, this is what I am going to do. I’m going to keep taking the poison because it’s keeping me alive for these treatments. I am going to hope like hell that I get the SBRT. And I am going to live the absolute FUCK out of life. You know that My Kitchen Rules bed party the other night? That was a party just because. There are going to be a lot more parties just because. I won’t let any chance to have fun pass me by. We will pack up the funbus and take the children for more holidays. In the summer and in the winter, because, hello COATS. Snowballs. FUN! I’m not going to miss a chance to learn, to grow, to love, to laugh. And when my time comes, whenever that is, I am going to be able to say I REALLY lived.
This is the first best year.
Gazbo and I when we emerged from yesterdays appointment
Youse just all love my guts for that earworm, don’t you? My pleasure 😛
In a few hours I will know if there will be any more “active” treatment offered to me, or I will just bide my time on chemo for the rest of my days. There has scarcely ever been more at stake….if my recent SIRTEX treatment has worked on my liver, and my lungs are stable under a centimetre, then I could be off sooner rather than later to a whizz bang machine with a very gung ho doctor attached apparently, who might very well be able to annihilate those four pesky little buggers for the time being. On the other hand, if I do not fit the criteria (and so much could go wrong – not enough shrinkage from SIRT, lung tumours grown, more tumours in lungs, liver or anywhere else will automatically exclude me from this treatment) and I just have to press on with chemo, I wander into really unknown territory (oh what the fuck am I talking about, my whole life is unknown territory now!) I am on second line chemo, it is the last “big gun” and my next infusion will be number 11. The effectiveness of these chemo regimes, though very variable, generally starts to wane between 10 and 15 treatments, though certainly there are people who have had many more than that. But you can see where I am coming from I am sure. I am not ready to start looking at trials which are seldom very effective, I am not ready for the tide to turn, I am not ready to start looking the grim reaper dead in the eye, not by a long shot. I want a look at this radiation machine like I have never wanted anything in my life.
I don’t really have any theories on what this afternoon will bring. Certainly there have been MANY signs that my liver has improved. My liver function tests have dropped to better levels than they have been in around 12 months, and only since SIRT, so logic has to say there must be something in that. I still slip into fugue like sleeps or or two times a week, complete, all consuming exhaustion where I can sometimes sleep for most of the day, but around those times I am doing astonishing things like walking most of the footprint of Southland which is a huge shopping centre, and standing up for an hour while the kids fucked around in Smiggle trying to decide what they wanted to do with their Christmas funds. I can’t really remember the last time I could stand for an hour, but it’s been a bloody long time. I’d have to say I’d be surprised if my liver tumours have not shrunk. But the lungs..different story. They tend to grow faster than my liver tumours, and they have only had a patchy chemo regime to hold them steady in the last few months. I am not symptomatic in my lungs, so I have nothing to go on. In a few hours, the truth will be out there.
One thing I am certain of is that in the last month or two, I have started to find a real peace within myself that eluded me for most of 2015. 2014 was not too bad, I still had hope in the shape of the liver resection, everything was shrinking pretty well, I felt generally quite well, and I knew there was a small chance that I could beat this. 2015 I didn’t fare so well, I experienced significant declines in my mental health that I had to learn to deal with, I entered the world of DEFINITELY TERMINAL CANCER, I had many medical setbacks, and there were several occasions where I believed that the end was not too far away for me. So, as a consequence, I started to withdraw a little again, from my husband, my children, my friends. Yet now, as I enter this third year of having terminal cancer, a year that I thought I would never get to start, let alone entertain the idea of finishing, I feel the ease returning. It’s not that I am in denial, that I think there will be a miracle, that I will beat this, that this death business JUST WON’T HAPPEN…I somehow sense that it is not close. And so, I learn to live again. I’ve reached out to friends, been less afraid to be vulnerable, started putting into place household routines that I can already see are bringing enormous peace and comfort to my children. I am entertaining, going out, reading more, facebooking less, loving my children with fierce abandon. Oh yes, I am having a good time, and am not ready to give it up, not by a long shot.
My Kitchen Rules 2016 bed party!
Our precious firstborn started high school last week. Emotions were high..as everyone knows, I didn’t believe that I would get to see that day. I shed some tears for sure, but in reality, my beautiful hearted bloke shed more than I did. And on that day, I once again experienced something that I have spoken about before…but beauty of a bond between my guy and myself that is born out of doing something that no one else in the world has done. We stood side by side and watched our baby, one that seemed like she was placed in our arms only a few short years ago, excitedly start the next phase of her life. We kept catching each others eye, smiling through our tears and knowing that we made that magnificent person together, along with the three that came after her. We were like the only two people in the world that truly knew what each other was feeling at that moment, because she’s ours. It’s such an incredible bond to share with another person.
And so, in closing, I can say that I am finally, slowly but surely, learning to lean on my fella again when times are tough for me. They are so incredibly tough for him that I try to protect him, but in reality, there is no way to protect him from the pain of this, and I really need him. So, I am slowly learning to stop protecting him from the intensity of my emotions, and let him be my rock. Last night we came home from respite, where we had spent a lot of time talking about what today might bring…what the next stage in the journey might be. We got into bed and laid on our pillows, facing each other and we held hands and looked into each others eyes. So much was exchanged just by our eyes…so much pain, heartbreak and hope. Generally the intensity of that would make me look away, but I didn’t. Even the most heartbreaking things can be beautiful when you are brave enough to look them in the face. We are not perfect, we fight, we scream, we say mean things to one another in times of stress, but I fell on my feet when he rode his Harley into my life. This love story has still got a lot of legs, and I won’t let go one minute sooner than I have to.
I’d love to say that I have never judged another parent on their parenting, but that would be a lie. I could honestly say that I have also judged another person on their “personing” When we judge another person, we hold them up against ourselves and say to ourselves, rather smugly, that perhaps they could do a little better. We hold them up against others, and say they could do a little better. I can also say that at times I have been every bit as hard on myself as I have been on other people.
A few short years ago, I knew nothing of adversity, compared to what I do now. I know people feel like I have had a lot – a difficult childhood punctuated by sexual abuse and bullying, years of self loathing, years of being terribly hard on myself. Two hip replacement, horrible complications from one of them that which left me with a paralysed leg from the knee down, and an opiate addiction. I parent four children, one of whom has Down syndrome and autism. It sounds like a lot, doesn’t it? But it has not a patch on these days (which in the succinct words of Powderfinger, turned out NOTHING like I had planned).
I’m not saying any of this so you will give me a medal, and a chest to pin it on. I’m saying it because I want us all to think about judging other people, and to do this, I must share what I now know.
A few years ago, way before cancer, I went to a meeting at Georgia’s school, run by a carers association, to let us know what help was available to us through this service. There were some parents there, some single mums, some grandparents looking after their grandchildren with very high needs as there was no one else to do it. I sat there astonished as the woman running the meeting explained that there was a service available through the agency which meant if the sole carer of a high needs child needed to go to hospital because they were ill THEMSELVES, that they could get a carer to their home within 3 hours to care for a child that might be dependent on oxygen, peg feeding, might have frequent seizures. Tough luck if you felt like you might be having a heart attack or stroke, hang in there for three hours and we’ll get someone there. I looked around the room and saw the relief on the faces of some of the people there, and saw how grateful they were that this service was available, even though it was expensive, and only able to be used ONCE. These people were completely on their own. Imagine going to bed each night with THAT stuck in your head. That, my friends, is adversity. There really are people who are THAT alone. All those things I listed above – I never had to do any of them on my own, not really.
This is just one example of how we never know what battles another person is fighting.
I had a bit of a wakeful night last night due to the steroids on board from chemo. I wandered around the internet looking for things to read and happened on quite a few extreme examples of people judging other people on their parenting and personing. Everything from whether they breastfed, and how long for, to what they wore, be it to the school run, or the shops, and everything in between. I could almost physically feel the shoulders of people I didn’t know sink in despair, at the sheer impossibility of them achieving what looks so easy for other people (but you can bet your arse it AIN’T).
How about we make this the year that we stop this shit. That we stop comparing ourselves to other people unfavourably, that we stop comparing others to us. If we know someone else is struggling, let’s lift them up. Let’s tell them that we saw what they did today, and that was enough, they did good. It might just change someones whole day.