Posted on March 14, 2016
Something curious happened yesterday morning.
It was a Sunday, and have always loved Sundays. Gaz works five long days and is understandably fond of a golf game on Saturday. So, Sunday is our family day. It always starts slowly, with me facebooking on the laptop, while whinging about Gaz watching golf on foxtel. The kids usually come in for a snuggle at some stage, though less often now, and we remininisce about when they were young, really small, babies….and we lived in our little 11 square house. I was often found to be whinging about that house, the size of it, trying to make it work for six people..but there are times now when I dream about being back in that house again. With those babies. Cancer never touched that house. It never touched a single fucking Sunday there.
Don’t get me wrong, Sundays are still good. Still my favourite day. I think I have written about it before, how all my days start now. But especially Sunday. So, I wake up, I stretch out of sleep, snuggle into a warm man, knowing the day is full of promise. Then I realise that I have cancer, a new revelation every day. It doesn’t make me gasp out loud any more, doesn’t hit me like a hammer blow. I just lay there for a minute, re-calibrate, bring myself into the moment, remind myself that I have this day. I still have this day, the same as everyone else who is still breathing on the planet. And then I get on with my day, with a scar cut through Sunday.
Sunday mornings also use to heavily involve Pinterest. I could spend hours on the laptop in bed, pouring over recipes that I wouldn’t make, projects that I would never do, Susie Homemaker type stuff that would have me shaking my head in amusement and awe at the ENERGY of these women! I wander in and out of Pinterest sometimes now, but never on a Sunday morning. It took me a while after being diagnosed to realise I’d stopped. Like Pinterest was for the living, for the bright, the beautiful, the hopeful.
Yesterday, I fired up Pinterest. I didn’t even think about it, I just did it. I idly wandered through recipes and DIY projects, laughed at the image of how these things would actually look if I tried to do them.
Then, I wandered down the hall to make a coffee and it hit me. It hit me that it HADN’T hit me. No hammer blow, no re-calibrating. The scar was there, but it was PART OF ME. It’s been with me for so long, that now it lives in me. As long as I live, I know it always will, but maybe this is the end of the every fucking morning realisation that I still go through to this day. I didn’t think there was another stage, but I find myself in it. So, there you go.
I’m tired at the moment, so tired. Last night I slept for 14 hours. I even missed My Kitchen Rules, lol. We visited a friend yesterday, and we had fish and chips at Balnarring Beach, which was lovely, but I slept in the car on the way there and the way back. I hope this will improve, but at the moment I know it is my body telling me something and I have to listen to it.
So, for now, I will stop worrying about how I am going to fill my future, and just “be”. I’ll keep on loving this man:
We have four hours of respite every second Tuesday, due to Georgia having Down syndrome. We have been really making the most of these lately, usually finding a nice restaurant to while away the hours, and we really TALK again. And we SMILE. I think Gaz has felt the shift too…he knows that we can’t be free of this, and must learn to live with it, and live well, and happy.
On a final note, last week I was really quite down in the dumps about the pink and grey hair combination….fire engine red is great for shits and giggles if you have the time and money to maintain it, lol. I’ve probably only got two cycles of chemo left for the foreseeable future and I decided whatever hair I have now, I am probably going to keep. So, I went to my hairdresser and said I don’t care if it falls out, PLEASE, can we try to get my back to platinum. I MISSED that hair every minute I didn’t have it, because the very first time I had it done it was like I was the person on the outside that was always on the inside. Might sound crazy to some, but it was the essence of who I was in a way, and I don’t feel like me without it. Three bleach baths and lots of toner later, I emerged like this!
It’s made me happy, something I never thought I would be able to get back, when I was told I would almost certainly lose all my hair on this chemo regime, or at least it would be rendered too weak to withstand peroxide. It’s like a symbol of strength. GO STRONG HAIR. Go strong me
Love and hope to all who need it xx
I saw my oncologist yesterday, to make a bit of a plan going forward, now that my liver mets are hopefully controlled by SIRT. I know I desperately need a chemo break…this has been coming for some time, in all honesty, it is nearly breaking me. And I am going to give myself a break for letting it break me. I said to my oncologist yesterday that I don’t know what’s wrong with me, I don’t suffer TOO much from side effects, I am EXTREMELY lucky to be able to tolerate the treatments without the endless infections, hospital admissions and sickness that some suffer. He tends to think I am pretty hard on myself and ran through a list of treatments that I have had over the last 26 months, on top of the 26 matching chemotherapy infusions….the major surgeries, the blood clots, the bowel obstructions…
I said something that I thought I was a long way from saying. That I need a break from chemo REGARDLESS of what the next scan shows. If by some chance it has all turned around in the liver, or I have popped another met somewhere, I still have to stop for a little while. Hopefully the scan is good though, as our optimistic plan is an absolute ripper. Two more chemo’s before the scan, then lung radiation therapy, and then, an indefinite treatment break. We simply watch my cancer markers (which are very accurate in me to know what is going on, if they moved upwards, we would know the cancer is active), have regular scans, watch, and act again when the time comes that we need to.
It’s pretty hard to take in what has occurred over the last few months, how things have potentially turned around. Last year was lived in mortal fear of my current chemotherapy regime stopping working. They ALWAYS do, and my last protocol started to lose effect at cycle 15….around as many as I have had now of the new regime. I had one decent drug left that might give me a few more months, but then we would be looking at trials, and few are very effective for bowel cancer at the moment. Then, all of a sudden, I was into active treatment again, which has been very successful, and a plan that might keep me alive for a good time, if still not a VERY long time. Even better, as well as this drug I know I can access, there is a new one approved in America (not here) that is adding signifcant time for patients of metastatic bowel cancer. Hopefully when the time comes, I will be able to access it here (after all, it might be a long time before I need it), otherwise, there is the option of selling the house, and using the equity to pay for it. We have always been prepared to do this, if need be. I can’t begin to understand though, how this PBS business works, if there is a drug that is so effective that the USA approves it, then honestly, we should be following suit.
So, all of a sudden there are options, multiple, chances, TIME. I thought that this would chase away the frequent visits from the black dog…in fact, he seems to reside here pretty much all the time now. It used to be that I would become “situationally” depressed coming up to scan time, when I had a lot of pain, when I thought about leaving my family etc. I would go to ground, pull out of it, sometimes slowly, sometimes instantly, when a scan results gave me a reprieve for a while. Not so this time. I was pleased, WRAPPED, of COURSE, but the black dog is still laying on the end of the bed, next to Hope the Wonderpug. Like Hope, he follows me when I go to the kitchen, or the shops, or out to lunch with friends. Life has lost some of it’s shine, and I want to get it back – I have to believe I can.
I said to a friend the other day that I feel like I have lost my sense of identity, like I don’t know who I am any more. He laughed and said that I was JULIA and that was all I needed to be. I know it’s true…it’s hard to explain, but it’s like I was preparing myself to die, so I forgot how to prepare myself to LIVE. You know, big last year, blog, book, QLD holiday, 60 minutes, most of all a legacy for my girls. I was going out, but my daughters could know that I did something big. Something they could be proud of. It never occurred to me that I would have the possibility of so much (relative to what was on offer) time like I have stretching out before me now. Do I have enough time to write another book? I have many article ideas in my head, but because of that fucking dog I think, I lack the motivation to pitch them, or even write them. Do I try and get a job? I want to take the pressure off Gaz to be the only breadwinner, as well as a very involved father, something dictated by my flagging energy levels. So much guilt. SO MUCH FUCK GIVING. And you all know that’s not like me. But bugger it, being in fuck giving mode for a while is fine, and perfectly allowed, for me, for all of you who have learned to give less fucks. The fucks are still there, and we can give them from time to time
I know I am a much better, and more involved mother. The gift that the last few months has given me is that I no longer fear throwing myself into their lives. They are better for it, and so am I.
For now, that’s enough.
Love and hope to all who need it xxx
I’ve thought a lot about whether to address this issue, and have decided that I will – but I will only do it once.
A couple of readers have bought it to my attention that they are concerned about my choices when it comes to parenting my children, whilst having a terminal illness. I have no interest in vilifying these people, I can only assume that the comments come from genuine concern, and we all have our opinions on range of issues, which we have a right to. I can also assume that if a couple of people express these things, then there must be a whole bunch of other people thinking it, who don’t say it.
So, here goes.
The very first thing I thought of, when the doctor said “I’m sorry, you have cancer” was my children. They are my first concern ALWAYS, and Gaz lags behind a tiny bit, as I do with him. They are for both of us first, always.
2014 was the year of hope. I found out that I might be eligible for a potentially curative liver resection, and even though the chances of it actually curing me were miniscule, I basically lived for that year like I wasn’t dying, because there was a tiny chance that I wouldn’t. That included how I parented. Around the ravages of treatment and major surgery, I kept things as real around here as I could. I cooked when I could, I cleaned when I could, I did all the school runs I could, I did the Saturday morning netball run..when I could. When I couldn’t, I drew my children as close to me as I could, into bed for snuggles and movies, whatever I could manage.
When the news came in January 2015 that the liver resection was a very dangerous prospect with a 50% mortality rate, things got distinctly abnormal. We explained to the children, in as simple terms as we could, the risks that mummy was taking to have this operation, but that it really was my only chance to be with them for a long time. The middle two seemed to take it quite well, but not my eldest, who declared her intention to lay down in front of the trolley and not allow them to wheel me into the operating theatre. She REALLY understood, and she was TERRIFIED. Yep, it was horrific, and further away from normal than you could ever imagine, but all we could do was be honest with them and all get through it as best we could.
2015 was the year of despair. On the last day of February I was wheeled out of the operating theatre only a couple of hours after I went in, with much more advanced cancer than they thought, and my last chance of a cure, gone. Only a few weeks before my oncologist had given me 6 – 9 months to live without a successful resection, so I knew what I was up against, I really was dying.
So, how should I parent now? Spend every second with them, make memories? This made sense, but to me (and ONLY to me, everyone elses decisions on how to tackle this have validity and I am sure are equally well thought out), it would also have them on constant alert about what was different….and what was coming. People in my circle did have opinions, and they did express them – that my life wasn’t my own any more, but all the time I have left to be given over to preparing Gaz to raise them on his own, and to filling memory boxes, writing them letters and reading them stories.
There is nothing whatsoever wrong with any of this, but I wasn’t READY. If there was anything I wanted, it was a “normal” regular every day family life for as long as I could have it – for them, AND for me. So, in the end, that is what I decided to do. I wrote about it in a blog post in March 2015, and I give you an excerpt here, as I think this explains it fairly succinctly.
“Someone said to me the other day that what was left of my time now was owed to those I will leave behind. To prepare them for the practicalities of life without a mother, to write my husband a long laundry list of the girls requirements, clothes and shoe sizes, where to order uniforms, how to get Georgia’s yearly nappy allowance. And to be honest, I will probably do that at some stage, but I won’t do it now.
Nope, for now, I am going to keep on teaching my girls how to hold onto that beautiful gift that is inherent in childhood, to be able to live the guts out of every day you have. I don’t want them to ever, ever lose that, not even when the harsh realities of adulthood try to seize it. I want to teach them to be resilient, to adapt with their changing world, but to do it without being bitter and cynical and looking for someone to blame for the way the cards were dealt. And most of all, I want to teach them to never, ever give up, to realise they have something of value to offer every single minute that their heart beats inside their chest. I want them to know if the great figures of history had known they were going to be felled early by a heart attack, cancer, or the bullet of an assassain, they might have done something differently, and the world would have been a lesser place. And the best way of teaching, is by doing.”
This time, NOW, is the only time I have to be a role model for my children. By the law of averages I won’t be here to see them through their teenage years, to have any influence on how they view the world. So, that is what I am doing. But do you know what. The passage taken from my blog / book above is actually the very essence of who I was BEFORE I was dying. I stayed home and raised my children until they went to school as that is what I wanted to do, but as Georgia was entering her second year of 4yo kinder, I started to get edgy. I wanted balance. I wanted to be a mother, but also re-define myself as a person. So, I went back to study, and there began a different and very happy chapter in my life. I felt no guilt that sometimes my children had to go to after school care, or someone had to pick them up. They were always well socialised and well adjusted children, so this didn’t bother them. Although I sometimes had to send them away when they wanted me, as I was on deadline for an essay or something, and I DID feel guilty about this, it was also an opportunity to explain to them that mummy had different responsibilities to different people, including HERSELF.
To stay sane, I always made a little time for myself. Nights out, girls weekends. Yep, I still do that now, too, even though it means spending time away from my children. It was good for me then, and it’s good for me now, it means I come back re-charged and ready to tackle life head on again. If I am to be honest, I need this now, more than ever. It also pays respect to my philosophy that what is left of my time on earth also belongs in part to ME.
Barring some miracle, there is a terrible day coming for my children, and for me. I dread it more than any day, even the one that I die. It’s the day that I come home from the oncologist and say to them that there is nothing else left to help mummy, and in a couple of months, mummy will die. But that time is not here yet, it doesn’t even feel close. I am not dying on anyones schedule, and at the time of writing this, I have been alive for 26 months from diagnosis. 26 months that I have had to enjoy my confident, well adjusted children. I had palliative care counsellors into them a couple of times, and after their second visit, I said to them, “what next”. And they said to me, this is when we withdraw from your children’s life – you are doing just fine, and so are they. That they were always there, always ready to come back, but the very best thing I could be doing for my children, I was already doing. That’s good enough for me, and a great place to end this particular discourse.
On a completely different note, today we celebrate 8 years with our littlest fairy. This day 8 years ago, I thought I was going to give birth to a completely different baby than the one I had. We were scared, but she turned out to be the perfect fit for our family, our very heart. She taught us how to live without fear of what is going to happen the next day, or even the next hour – as that is how she lives. She’s absolutely perfect – sometimes the universe just knows, eh? Happy birthday our gorgeous Georgia.
Til’ next time.
I’ve just been to be de-bottled, and now I have a new port in situ, they pulled that dreaded picc line out of my arm at the same time! So many reasons to be happy, long soaks, not getting it caught on everything, not having to wrap it for the shower, but best of all, it saves me 4 visits a month to the chemo unit (once a week to have it dressed and flushed). Four times I don’t have to find parking in that diabolical hospital. Four days that don’t have to be planned around what time they tell you you have to be there. Four days of no stingy alcohol solution, no pulling of dressings (my skin is getting so sensitive now that I can hardly take any of the tapes and bandages without redness and blistering, If the little things mean a lot, this one is MASSIVE. As my oncologist has dropped me to monthly visits instead of fortnightly, that is FIVE days a month now that my days aren’t medicalised. Sometimes it’s hard to drive home to someone who hasn’t experienced it JUST how MUCH that means. Bloody yayness!!
Thanks for the outpouring of support following my Go Fund Me post. Everyone who knows me knows I find it hard to accept this sort of thing, but at the same time, I have to learn to take when people want to give, and I am so grateful for the lovely lady who is putting a lot of work into not only setting up the fundraising, but finding me travel insurance, making the tentative booking with the tour company etc – I have never even met this woman (but she strikes me as very much my type 😛 ) Thank you Julie, I accept gratefully. it is very hard to do something just for me, but at the same time, I desperately want to get away from the cancer life for a few days, and I am looking forward to it so much. Nothing more will be said by me about the subject
I am on that funny roundabout again, with learning what to hang on to, and what to give up. I entertained the idea of having it all again. Looking after my family, maybe going back to TAFE for a couple of subjects, and a full time writing career to boot. I have been putting a lot of pressure on myself about the writing especially. I still have a head full of creative ideas, but lack the motivation to sit down and write them into an article, and even less energy to pitch them to editors. I just don’t have it in me at the moment, as my energy levels are so far from normal that just the effort of sitting in front of the screen all day thinking means something else loses out – my family. That is the area where I think I am really kicking goals. I am so proud of my family. New routines are starting to come into their own, I cook most of the time, we eat around the table. Instead of just signing their homework I go over it and try to give some ideas when I feel it’s appropriate. As long as it’s not grade 6 maths – that is well beyond this little black duck! Dakota attends the SEAL academy at her school (accellerated learning), and she is doing so well, keeping up with all the homework, very disciplined, and REALLY enjoying high school. Indi has really pulled her socks up in grade 6, and does all her homework sheets for the week on the Monday afternoon, so she has time to play the rest of the week. She has decided she would really like to be in one of the academies too – she would like the arts academy (their year 7 camp is to the USA!), but she has been to immersion days in both art and sports the last two days, to try them out. Instead of just leaving it to chance, I have been to the office to discuss how to improve her chances of getting in once we submit the portfolio, and they happily gave me ideas. Last year I just would have thought well, I won’t be here when you attend, so ask your father. I am no longer afraid to immerse myself in their future, and to play a very big part in their present, and gosh it feels good. I always wanted little readers, was a lonely child, so escaped into books early. Dakota showed a bit of keenness early on, but the other girls not really at all. Now all of a sudden, since the girls set up their own Saturday book club, the other two are voracious readers! We read together every night and it’s getting me back to my love of the written word too – on the page, not the screen. Writing can wait – maybe forever, or only a few months. I have to stop putting that type of pressure on myself. What is central to me, what grounds me, will always be my family.
Tonight I’m going to party like it’s 1999. Wanna hear how? Well, Gaz is taking the older 3 girls to our usual Thursday night out to the pub for dinner. I am a bit weary, it’s only day three. I am going to keep Georgie, and we will probably have a nice bath together and I’ll wash her hair. Then we’ll have Mac n Cheese for dinner. Make no mistake, I AM talking about the one with the cheese powder, not the delux with that shitty tinned cheese, nope, give me POWDERED. Mmmmm, orange. I don’t think I’ve had it for 10 years, maybe more. Luckily I didn’t get a bottle of Tango to go with it, or I would be glowing tomorrow. Then, I will put the little one to bed, and settle down for some mindless, easy to watch tv. I think I will give myself a news break for the next few days, and pretty much a computer break too. I’m disheartened by reading about a woman having to scream across a crowded emergency room “but she’s my wife!” after her spouse and the mother of her two children died suddenly. Not in Australia in 2016 – really? I don’t want to hear about senior Catholic cardinals tell how they covered up child sexual abuse because they weren’t very interested in the story at the time they were told it. You might as well have put the noose around a few victims necks yourself asshole. I DEFINITELY don’t want to entertain the idea of some halfwit bigot who looks like he has a giant decomposing rat on his head becoming the leader of the free world. Nup, nup, nup, time to step away from the internet and pick up a book, or finally watch the Best Marigold Hotel, or some episodes of Call the Midwife.
See ya soon – be good! And it ya can’t be good…well, you know xxx
I want to write about something I feel very strongly about, and this might be more honest than I have ever been!
When I was first diagnosed with terminal cancer, many friends approached me wanting to set up Go Fund Me accounts to facilitate me having as many good times and memories with my family as possible, without having to worry about the bills. As much as I knew friends were very keen to do this, I could not say yes. I’d been familiar with many Go Fund me accounts that other people had run, long before I was diagnosed, and if I was moved to, I donated to them. As a general rule, it was when people were in dire financial circumstances, and needed to be able to take time off work to care for a child, or partner with cancer, or when lifesaving medication was needed that was prohibitively priced when not on the PBS. Anything that really MOVED me.
Quite simply, I’ve never been that moved by my own situation. It’s sad, one day it might well be a tragedy, but at the time I just wanted to go on as normal, and for peoples hard earned funds directed to someone that was more deserving than me. After all, I am surrounded by an enormous amount of love and support from family and friends – cocooned. I know that not everyone has that, and it’s worth more than all the money in the world. When I put my situation up against many other peoples, I still, always, felt fortunate.
Some people got a bit cross with me along the way. Old, dear friends now living overseas who said that they were unable to contribute in a practical way with a meal, or a load of washing, or some babysitting. If they had no Go Fund Me, then they had no way to contribute in the only way they felt able – with money.
Fast forward to February last year, 14 months after my diagnosis. My friend Dev collected a tidy little amount of money for me by having a whip round with the people who were in Gunna’s writing masterclass with me. This was very timely, as I was only weeks out from going into an operation that offered me only a 50% chance of ever walking outside the hospital again. So, when we got the money put in my account I said to Gaz, I want to do something FUN with this, something decadent, that is what it is MEANT for, that is where it will mean the most, to all of us. That is when I said I wanted to swim in the Offspring pool, and the rest, as you probably know from reading the post / book is history. I said we were going to the city for the weekend on Facebook, and could anyone recommend great stuff to do with kids. This was my chance to make memories. So, when my friend Nay suggested again to set up a Go Fund Me, so we could have a really really GREAT weekend of memory making, I swallowed my pride and said yes. Because it was for my girls. I thought hey, it might raise a few hundred, and we can have an extra night, or do a theatre show (prohibitive due to the size of our family). What actually happened was it raised thousands in the space of a few days, and I was embarrassed, humbled, VERY VERY GRATEFUL. We cut loose that weekend. We let the kids cut loose on the mini bar which I something they most certainly had never been allowed to do. We stayed four nights. We went to Strictly Ballroom, Cirque du Soleil (with a lot of help from very special friends, as it was a sold out show), I had my hair and make up done 50’s style, Gaz and I ate at Rockpool, the list went on and on. The children were DELIGHTED, and we delighted in it. There was no way however, that Gaz and I could leave behind the fact that in a few short weeks, they had an odds on chance of no longer having a mother. We wanted to give them as much joy as possible in the time that we might have left together, and although somewhat embarrassed, I felt no shame whatsoever in letting the Go Fund Me happen that time. We could never have given them that on our own.
Just before Christmas when I was fixing to get my new kitchen done, a friend of mine who has many high profile friends in the Australian music industry, said that her friends had been touched by my situation, and she could easily pull together a benefit concert that would pay for my kitchen. I was touched, but firmly refused, I feel strongly some times that I am given too much where other people are not. I did however agree to her holding a concert sometime soon, at which time we would use the money to set up a foundation (to be named Julia’s wish), in which we could grant wishes that terminally ill mums could do with their children. Experiences, memory making, like I had got to do that weekend in the Offspring Pool. My friend wanted to do it for me, but she happily went along with this, and we are deep into researching what is needed to set this foundation up. I don’t like to get into finances too much as I think it’s tacky, but I borrowed the money for my kitchen – ALL OF IT. I didn’t look for freebies, or sponsors, or anything like that, I just used good old credit like everyone else does if they have access to it.
Fast forward to a couple of weeks ago, when I got a royalty payment for my book and delightedly shared with my Five Fairies facebook page that I could afford to fly my family to QLD to spend Easter with friends. I mentioned that if I had enough left over, I might treat myself to a trip to Thailand with my mate Mrs Woog. I struggle to spend money on myself, but hey, I earned that, and I was delighted that I might be able to spend it on something decadent just for me. I was immediately contacted by a reader of my blog who was in the business of charity / wish granting, and she didn’t want me to pay for Thailand. It was enormously kind of her and I agreed for her to look into things and see how she went.
This came full circle yesterday, with me being the recipient of another Go Fund Me account, to get me to Thailand. Staggeringly, over $2,000 has already been raised in less than 24 hours. It is staggering to me, heartwarming, touching, but very, very fraught for several reasons.
A few years ago, I played some part in fundraising for a dear friend whose daughter has been diagnosed with a degenerative disease, which causes her to regress in every way. They needed a modified car, bathroom, the child in question wanted to go to Disneyland. Everyone swung into action very quickly, and a committee was formed. I didn’t join the committee, as it is my policy to never be on a committee, but certainly I was involved, and obviously donated….for me there could never be a better cause, this beautiful child was best friends in prep with Dakota, it was by far one of the most gut wrenching things that I have ever experienced.
Here’s the thing, though. Let’s just say that I spent a few hundred bucks, tickets to the ball, silent auction items out the wazooo (I am a silent auction tragic, I will STALK people if they try to go near “my” things). Now, I could not have given two fucks if this beautiful family spent “my” contribution to their fundraising buying 10 pizza’s from Domino’s, a few slabs from the bottle shop, and had all their friends around for a blast. Fuck knows they EARNED that.
Soon enough though, other people started to care how the money was being spent by this family. All of a sudden the committee was asking for justification of the spending (when clearly it was being spent as it SHOULD, and for the things it was meant), and wanting to see receipts to decide if they would pay out on them or not. Even more astonishing, families of children with the same condition contacted the mum and said that she should not have been the recipient of so much, that she should share the money between other affected families, and not keep it all for them. Now, while I can understand this, I can’t condone it, nor the heartbreak it caused my friend. We were raising the money for THEM. Naturally she became very disheartened and shut down the charity for her daughter. I would have done the same – it was possibly the most ugly thing that I have witnessed. If you give, you must give FREELY, and without agenda.
A little while back a friend of mine put on a public Facebook status of mine that she had often felt jealous of me, that her life, for totally different, but still very tragic reasons, went to shit at the same time mine did with my cancer diagnosis. That it was like half the world descended on me, cocooned me with love, kindness, help. That she desperately needed this to happen for her, and it hadn’t. Then she was immediately horrified at what she had said, that someone could admit to being jealous of someone with terminal cancer. I felt completely differently. I can’t tell you how much I appreciate brutal honesty at that level. And because I totally understand it.
There are so many inequities in the world. In the world of cancer, and just in the world. I can’t fix these inequities, I wish I could. If refusing the fundraising for Thailand meant that the money would immediately be directed to someone that I see as more deserving, then I would do that in a heartbeat. But I know it doesn’t work that way, that the people who are fundraising for me are doing it for ME. Me refusing it will derive no gain for anyone – so I won’t.
No, I will go and have this holiday in Thailand, and I will enjoy it. But please know that I will do this grateful, humbled….staggered at peoples generosity. When I return, I will pay it forward with my Julia’s wish foundation, and a few other things I have up my sleeve that I feel might “even out the score” a bit. If you have any strong feelings on this, or think that it is tacky for me to accept, well, my inbox is open. Use it if you wish, but please be kind.
I’ve just spent a few more days as a guest of the local hospital. Boring boring, I won’t go on about it, I thought it was another blood clot, but it turned out to be more inflammation bought about by my beloved SIRT beads, this time localised inflammation to the liver, which manifests as shoulder pain. I was admitted for a few days, had a few scans that showed nothing sinister, and put on a course of steroids and all the good painkillers.
I was still an inpatient on the Tuesday when I was due to have chemo, so I was wheeled over to the integrated health to have it. Unfortunately, for the first time in 25 cycles, my blood counts were not good enough to have it. My platelets were low (we weren’t too worried about this as we had been hitting me with blood thinners in case of a clot and this will have the platelets shaking in their boots.) Sadly though, and more scarily for me, I was neutropenic, my immune system not really strong enough to have it. I’ve always bounced back really well between cycles, ready to have the next one, but not this time. The hospital oncologist felt that my body might be going into real protest now, and we might be in with a fight each time to get the chemo into me. It was a bit dishearteniing, but perhaps I just needed to get home, as I was released the next day, enough for one refreshing nights sleep at home, and then returned to the hospital the next day to have my new port inserted and old one taken out. My bloods were checked, and the platelets were on their way up, and incredibly, overnight, my neuts had totally recovered. So, looks like all systems go for next Tuesday, for what I hope will be my second last chemo for the time being, after which time I will go and have the lung treatment and have a break. Emotionally it has been a bit of a struggle, but I am still ticking boxes, just taking the long way round. I have to hang onto that.
The best, and the worst thing about spending time on the oncology ward is the people you meet. I remember when I was diagnosed, and for the first few times I had to be admitted, I begged them NOT to send me to the cancer ward – I was just simply terrified of being there. In the meantime though, I have come to terms with it a lot more, and definitely prefer to be sent there, as there is a special collection of nurses and doctors who really know how to look after the physical and emotional needs of people with cancer.
This time, my ward mates were Bev, who has lung cancer, and Sharon, with bowel cancer. We were all in various states of struggling, and our nights were hard, but our days were actually filled with a lot of laughter and solidarity. There is simply no one that understands what another cancer patient is going through, physically and emotionally, than someone in a similar boat. Usually you keep in touch with some people, but this time it was different..just in the space of a few days it felt like our families were joined. There was much excitement about my lovely book, so I was able to get Gaz to bring in a couple of copies for my wardmates. Gosh I love sharing that book. There has always been excitement around in on the ward and I always get greeted by hugs and kisses from the nurses who have enjoyed it, and this time the kids were thrilled to go past the nurse unit managers office and see a copy of it on the shelf in there…”look mum, there’s your BOOK”. It makes them proud, and me proud, but I don’t say this with some raging ego, because the best thing that has ever happened to me through the blog, and then the book, is the joining together it brings between me, and other people. I know that Bev, and Sharon, and their families will be able to read it, and see parts of their own experiences with this fucked up disease, and feel less alone. There was Bev’s husband David, her daughter Marcelle who came down from Sydney, her son Jay, who has had so many people in his family impacted by cancer that he is about to ride from Brisbane to Melbourne to raise money for Peter MacCallum cancer hospital here in Melbourne. And there was Sharon’s loving and devoted partner, Jeff. Every night my visit from Gaz and the kids was looked forward to and anticipated, and we all got to know each other in a way where you know if you met these people under different circumstances, (and fuck you wished you did), you would still want to be mates. So much love to all you guys, thanks for the lift home, and the gifts for my girls which will always be treasured.
While in hospital, we heard the story of Sharon’s partner, Jeff, who was given only a few months to live with aggressive leukemia more than five years ago. At the 11th hour, he was put on a trial drug, and is still very much here today to tell the tale. He books in for a blood infusion every couple of weeks, but otherwise lives a perfectly normal life. You hear about these things happening, but it is very rare to meet an actual person who it has happened to. My oncologist, who originally thought that my life expectancy would be very short, said to me last week “we are in unchartered territory now”, I’ve gone way past my most optimistic “use by date”, I am stable, benefitting from new treatments, and feeling what it feels like to be hopeful again. To believe that my cancer might be able to be treated like a “chronic illness” and that I could go on for some years. Now we are just all about looking for the next thing to keep me alive, to stay ahead of the game. I like unchartered territory, I was never much a fan of the well trodden road anyway.
Today I started planning my 45th birthday celebration – it’s in a few weeks. I was called to re-read a post from March last year, where I was planning my 44th, and in my mind, certainly my last. It was, this terrible, terrible day, right up there in the top five worst days of my life. Kez and I had gone to Costco to check out the party food situation. I had been in pain all week, and had needed several visits from palliative care, and I had just failed the liver resection and been given a few months to live. I saw some pyjama’s at Costco that reminded me that this would be the last year that I would buy my girls their Easter pj’s – a bit of a tradition in our household. I had a complete meltdown and had to come home. The party, when it happened, was equally diabolical. I had to sit in a chair all night and had to wait for people to come to me to speak to me, as i was in too much pain to stand up. The party ended, for me, at about 1am, when I had to leave my remaining guests to come downstairs and be visited by palliative care with another one of their loaded syringes. Everyone there thought they were saying good bye to me that night, certainly no one thought I could survive another year.
And yet, here I am, nearly a year later. I feel a great deal more healthy that I did on that warm March night last year, and I look to the future with hope of new treatments that were still very many months from presenting themselves on party day. If you have been told your days are numbered, that there is no hope for you, come and walk beside me today. You just never, ever know what is around the corner, please, never, ever give up – next year it might be you planning another birthday party you never thought you would get to have.