Posted on October 13, 2016
Hello my friends. I am so sorry it has been so long between blogs. I always feel so guilty when I realise that those who are not on Facebook and hooked in with my Five Fairies page there (which I try to keep up with to a degree), might really worry about me.
I have been quiet, especially with my online presence. There are a lot of reasons for this, and none of them are “bad”, it’s more just been a natural progression from the online world which has played a big part of my life since I have been sick (since I have had kids really, I joined my first online parenting group in the year 2000 – 16 YEARS people!!) back into the “real” world, while still loving the connection it gives me to other people.
When we lived in our first cosy 11 square house and had little kids which I was home alone with all day, I got into the internet big time. The computer was in the lounge room, and if the kids were asleep, or playing happily and not otherwise needing me, I was on there. Then, Gaz would come home, and we’d launch into the bed, bath and book routine, and I would turn the computer off for the day, I was NEVER on there at night. After that, because Gaz and I don’t share any taste in television, I would go to bed and watch TV and he would watch it out in the living room. Since the day my first child was born, I have been lamenting the loss of my ability to read, when I used to hoover down 3 or 4 books a week. But after children, I just couldn’t do it, I would read a page and a half and have no idea what I had read, so I pretty much gave up reading altogether. And since then, it’s been the same….can’t concentrate, always something going on with the kids, husband gets cancer, I get cancer, somewhere in there we have a child with a disability. How good is Facebook? You can chat with your mates, find and share information, and exchange all this in a matter of a few lines of text, and even I managed to ingest that.
Then one day, Gaz bought me a laptop. I was DELIGHTED. But of course, the internet started to come to bed with me, often until late into the night. Then there were smartphones, so you could take Facebook with you everywhere you went. The kids NOTICE, they do, but I would look around the park where the kids were playing and hey, every mum in the park was immersed as well. So, no big deal.
This is not a judgement on anyone who uses Facebook a lot, I have done it for 16 years to the point of addiction. Others are into it for the friendship and connection, and there is nothing wrong with that either (I would fit into that category too). Actually, I am not sure what year Facebook came to be, but before that it was my parenting forum, which I was equally enamoured with.
My two middle children have become voracious readers. So, a little while ago they started coming and getting into bed with me at night and they would “do bookclub” and I would muck around on the laptop. Then one of them said to me “mummy, you have got so many books, don’t you want to do bookclub too?” It’s the running joke in this house, I can’t go past an op shop without going in and coming out with at least 3 or 4 books that I add to the pile that is known as my “leaning tower of books”, along with a line from Gaz “another few that will never be read”. So, I said yes, I do want to do bookclub, and instead of picking through the big pile, I am just going to point to one with my eyes closed, and read that, no matter what it is about. That way I get a nice cross section of different styles and subjects. Well, as it happened, the first one I pulled out was by an author I had never heard of, and it was a cracking thriller of over 600 pages, and I read it in 24 hours. I decided no more internet at night, back to the good old days of expanding my mind by reading words on a page. I’m back to three books a week, though I have done 4!
It’s spilled into the day times too. If I have some spare time when the kids are at school, I’ll usually pick up the book. Writing this blog is the first time I have spent more than 10 minutes with my lap top in my hands for many weeks. I check Facebook on my phone a few times a day, and sometimes through the night if I can’t sleep, and I can get everyone’s news, but it DOES mean that I engage less with people, and I do miss that. I have also become disconnected from my writing, which is extremely important to me, and the one thing that keeps the brain machine ticking along, and stops me from turning into a complete hermit.
So, I have made a deal with myself. Slightly longer Facebook sessions at strict times, where I can talk to people rather than just read. Bookclub stays. No laptop in bed stays. Writing is back. I pitched an article yesterday and have also agreed to write a couple of pieces for other people – then I will be back into it.
And this blog – I promise I will keep this up more. I’m going to finish this post here as it is getting so long, but there is lots more to tell which I will over the next week or two, including my rather long period of poor mental health, which set in AFTER I got my huge news about my tumours having shrunk. And I am not sure that I mentioned it on the blog, but I was nominated for BUPA health fund’s blogging awards, and made it into the top 5 of my category “Health”. That is a night that deserves a whole post to itself, it was incredible, especially when I went on to WIN my category, while feasting on degustation by Shannon Bennett at Vue de Monde, on the 55th floor of the Rialto. Really amazing stuff, and more about it next post.
I have a scan next week which will determine whether the treatment is still working. Nervewracking time, where I enter “scanxiety”…there is nothing you can do about the terror but just live through it, and come out the other side, with either good news, or a plan.
I hope everyone is doing ok, and much love and hope to anyone who needs it.
On 11 December, 2013, the only Julia that I had ever known walked out the door forever.
It’s only natural of course, with a diagnosis of terminal cancer, your innocence is ripped from you with such brutality, you can never return to the same place you were.
I have written before about the concept of joy. No one can walk around in this state of heart bursting all the time, but it was something I needed to feel sometimes, something that fed me. Knowing that you have met the love of your life – Joy. The birth of each new baby, to make our family bigger, richer – Joy. The sheer, almost thoughtless taking for granted that there will be something else around the corner that will open your heart a bit more. Yes, I needed that.
So, how do you cope with the concept of knowing that not only will you never feel joy again, but that you will never actually even be HAPPY again?
And so I started to make bargains. When my new friend you never want to have, the oncologist told me that my cancer was so advanced that he was not even sure it was treatable, but told me to take the two week Christmas holidays that we had booked for the family and come back and start treatment, I made my first one. Two weeks. I had that two weeks to be happy, to still be a family – I’d start with that. Reducing my life to tiny pockets of time.
I remember when we ran through the chemos. For me, there were three “lines”. They almost formed pockets of time in themselves. The first was pretty much always going to be the best. The best potential for shrinkage, the longest period of time before it stopped “working” (if it worked at all). The second line, maybe a bit more shrinkage, stability for a while, probably shorter in it’s effectiveness. Once he started talking about the third line treatment I started to glaze over. A short acting drug that might extend my life for a few months, with what sounded like horrific side effects, like an acne rash all over your body, and peeling, cracking skin. I doubted I would even try that one.
A scan was ordered after 6 treatments, to see if the chemo was working. Amazingly, it had, and quite dramatically. Enough for a liver surgeon to say that he thought he had a 70% chance of removing all the tumours from my liver, and potentially curing me – my only chance of a cure.
It was February, 2014, and surgery was booked for May. My goodness, now THAT was a pocket of time! The deepest ache was always to live “normally”, so I made another bargain. From February to May, that was what I was going to do, I could give us all that.
I rallied even though things did not run smoothly. A near fatal bowel obstruction meant that I had to have life saving surgery in March. This changed the order of things, liver surgery was cancelled, and they decided to remove the primary bowel tumour first, in August. Still, I could do this, we will still on track, I still had my chance of a cure. More living “normally” around recoveries from operations.
In many ways, this was an incredible year. I stripped away all that didn’t matter in life, with a frenzy that only a drastic situation like this can bring. I stopped worrying about what people thought about ME, which is something that had consumed me most of my life. It was the single most freeing thing that I had ever done – to learn to really like myself, after a life time of self-loathing. I was stuck, often, by how so many things were better than they had ever been, but with the malevolent and bitter aftertaste of a terminal diagnosis.
In the November, the liver surgeon told me that he thought that the amount of residual liver that I would be left with after the surgery would be quite dangerous, being on the borderline of survivabilty. However, he wasn’t worried, he just wanted to perform a procedure to block some blood supply to the “good” side of my liver, make it grow larger, make the surgery safer. Something he did very commonly, and it worked in over 90% of patients.
It didn’t work for me. Less than 48 hours before my life saving surgery, it was cancelled. He had something else up his sleeve though, something he hadn’t performed before for this particular reason, but he thought it would work.
It didn’t. Nothing could have prepared Gaz and I to sit there and hear him tell us that due to my sheer determination he would still offer me the liver resection, but now it carried with it a 50% chance of death (and a slow, agonising death over 6 or so weeks, not a going out in a blaze of glory on the operating table). And, worse still, if I was in the “good” 50%, his chances of actually curing me were, he thought, now in about the 1 to 2%.
Very much against the advice of the surgeon and the oncologist, I decided to have the surgery. The surgeon insisted that before he would perform it, I had to ask my oncologist how long he thought I would live, so we could really be sure it was worth taking such a massive risk with what time I might have left. I didn’t want to do this, I never asked for timelines, I didn’t want to live against a clock. But I had to.
The next week Gaz and my brother and sister sat and listened to the oncologist talk in a period of months – maybe 6 to 9. If I was lucky. So, I returned to the surgeon, and signed on the dotted line. Surgery was booked for the end of February.
I remember so clearly my response when the surgeon asked me how I could bear to give up even that time. Time to make memories with my family – this surgery could, and he thought probably would, cost me all that. Then he said to me that the surgery was so major it was a minimum of three months to recover any sort of quality of life at all, and the high likelihood was that I would arrive at that appointment three months later to find that the cancer was ALREADY BACK.
I told him that was EXACTLY why. Because there was a small chance it wouldn’t be. ALL that I had wanted in the preceeding 12 and a bit months was just a few days, hours, minutes, seconds, where I MIGHT NOT DIE. Where I MIGHT NOT HAVE CANCER. Where I could exhale for a little while. Where innocence might not be lost forever. I was more than willing to struggle, to suffer pain, for that whole three months for a few minutes where all the air left my lungs, and I could fill them again.
But it wasn’t to be. The surgeon shined a special light over my liver on operation day, before he cut me open fully, and the cancer was revealed to be too advanced. And with that, my chance of ever exhaling like that again, of rediscovering that innocence lost, was gone forever.
And with that, I had to accept that I would now always be “living like I was dying”. It was the single hardest thing that I have ever had to do, but for my babies, for Gaz, for all of those who loved me, I had to try and put that 6 to 9 month timeline behind me. I made my motto “As much as I can, for as long as I can”.
Amazingly, 2015 had some things in store for me too! A BOOK! My little blog was being made into a book – something many dream of their whole lives, but few achieve. But my timeline was being eaten away, my chemo regime was becoming less effective, and my body was declining right on schedule. I desperately wanted my book to be published while I was still alive to enjoy it, so the publishers moved very fast and my book was released at the beginning of September.
At the same time, we found that during a QLD holiday in August, my chemo regime had stopped working altogether, and my cancer was advancing rapidly. My oncologist said he desperately wanted me to be able to stay off chemo long enough to enjoy the fun that went with the launch of my book, the book launches, media appearances, the whole exhilarating box and dice that goes with these things. It was only for a couple of intense weeks, and we decided that it was safe for me to go chemo free for those, before he tweaked the chemo routine, and I was back on the treadmill again.
More bargains. Just let me have this time. Gosh I was getting good at embracing these small pockets. And, largely the universe was kind to me, my pain increased, my fatigue increased, but I was filled with adreneline, and I had the time of my life during those few weeks.
A return to the chemo chair, while not doing anything ground breaking, was holding things reasonably steady, when my oncologist shocked me in December (the very month that I was told I would definitely be dead, given my original best case scenario of 2 years) by proposing a course of two different radiation treatments on my liver and lungs that might hold things steady for a year or two! Some people had had even longer!
This was my chance! The chance to live that dream again, where I knew that I couldn’t be cured, but didn’t have anything imminently threatening my life! I felt so sure it would work.
We started with the radiation on my liver – beads placed directly inside my liver, to reside next to the tumours, hopefully to melt them away. As intoxicating as this chance was, I think this is when I really started to become a ghost of myself. The fatigue so all consuming, the sickness so constant, the fight too hard, too long.
It was worth it when it worked! Tests showed my cancer markers in my blood had dropped 100’s, my liver function was returning to normal. I would have partied like it was 1999, if only I had the energy. Party I didn’t, but for a precious, short time, live like I was NOT dying, I did. The most precious gift ever.
Once again, it wasn’t meant to be. Just as we were about to embark on the next stage of this treatment, tests showed that my liver was turning on itself again. Two precious months was all I had had to “enjoy” the fact that I might have a life again.
Things stayed the same for a short while, and then I got very sick. Cancer grew over my bile ducts, with a new vigour and aggressiveness that it had never had before. I itched and burned, and bruised, I vomited, I turned yellow – and I knew it was over. I had a couple of surgeries to try to turn it around, but timelines started to be discussed in mere weeks. The hope I had felt a couple of months before, to the prospect of weeks to say goodbye to my babies, to my Gaz – it was staggeringly swift and cruel.
And what did I have, to fight? One small glimmer. That “third line” treatment. The one with the rash, and the horrific side effects. The one that possibly allowed you eke out a couple of months of life. I decided to try it, for my babies. The time left was for them, there was still so much to say, to explain. Maybe I could prepare them, just a little bit, for life without me not to be so harsh.
In the meantime, I went to palliative care. I was in too much pain to get any quality of life out of this treatment, even if it did work. A beautiful doctor got me out of pain, and I spent 8 peaceful days in the unit, gaining a bit of mental strength for what was ahead, having sleepovers with my babies, having long talks with those who meant a lot. It was a gentle time, but one where it was acknowledged that I had moved into the next phase – the one of dying.
And so, I went home, maybe for the final time, pain free, and as ready as I ever could be to face what was coming. I remember the first day I had to chance my weekly morphine patch after I left the hospice. Pain returned with a rage the night before, and after picking up the script the next day, I must have made a comical scene, actually stripping off my clothes like a maniac outside my front door, so I could rip off the old patches and put on the new. I wasn’t sure if I had become an opiate addict almost overnight, or the pain was still too great to cope with, but it didn’t seem to matter.
Then something strange began to happen. The following week, I seemed to need that morphine patch change quite a bit less. I remarked to Gaz that with my level of problems, even a high dose of morphine like I was on should not, in my opinion be enough to not only totally overcome the pain, but make me feel so much better. I literally felt better every day, not just pain wise, but within myself. We figured the rash drug must be working to some degree at least, maybe keeping things stable, and we were comforted by the fact that I probably had a few months quality time left, time to make more memories.
Last Wednesday, we returned to my oncologists office, to find out the results of the first scan since the new treatment had started. Now, I knew I felt good of course, but self- preservation had kicked in a few days earlier. The one where you tell yourself it can’t possibly be good, and prepare yourself for the worst. And of course, the “worst” in this case could not have been more dire – a final treatment that was not working. Weeks afterall, or maybe a couple of months in decline.
As I wandered into the office ahead of my oncologist, and he walked in behind me, I could hear him saying the words…”now Julia, I know you think you sometimes know the results of your scans before I tell you…”….and at that point I accidentally kicked the edge of his table. I decided that childish petulance suited the situation quite well, so I charged over the top of him…”nup, wouldn’t have a clue”. Then I realised that he was really warming to his subject. Huge smiles, thumbs up, “you are not going to BELIEVE this”. It’s always the same for me. When I hear the relief in his voice, a single tear slips down my cheek. It slipped down. He asked me if I wanted him to talk in numbers and I said yeah, so he sat at the computer and started to talk of liver tumours declining by massive centimetres…nearly half of their volume. This pissy little drug? The one that I wasn’t even going to try. The one that I Maligned long and hard for it’s side effects and lack of longevity. Well, it seems in a very small percentage of people, it is something akin to a miracle drug. And it seems I am one of them.
There isn’t a road map for this. The three or four months it usually gives, well, that “could” happen. It could go on the turn. But as he wrote scan requests and blood test slips, and told me to see him in SIX WEEKS (never gone more than 3), and have a scan in THREE MONTHS, he said this wasn’t going happen. I’ve only had six treatments, there is still room for lots more shrinkage. People can go on for years like this. And I’m going to be one them, I am. Because I have got that pocket that I dreamed of. The one where I know I am still going to die of this disease, but I don’t know when.
On the way to the appointment, I was thinking ahead about how we all still had to eat, and me making anything wasn’t on the cards. Manically, I thought about how we would go for pizza if it was shit, but if by chance I got some “good” news, even if I was stable, then I was going to Ginseng for Chinese. I love Chinese, but we never go, as the children are not fans.
So, we got home, and gathered them up, and said that we were off to Ginseng. Groans all round, but they could see that we were festive, and they were happy to run with that. As we gathered around the table, I started to tell them a story, about when I was a child, and there was anything to celebrate, then my mum and dad always took for me for Chinese. Then, my face lit up – yes, this was joy, with the delight of being able to tell them another story, share another precious family memory. All the while, having a chance to make more of our own. Indi warmed to the story, and wanted to know what I ordered. I said I always had chicken chow mein.
Georgia tore up the tablecloth.
Tana said mum, I think we should have a girlie day and go have massages.
Indi ordered chicken chow mein, and came around the table frequently to pat me and talk about tv shows and snuggles.
Dakota asked me if there was any chance I could help her write a paradox poem, and I said I could. She seemed surprised, but delighted.
The owner of the restaurant glared at Gaz frequently for always staring at his mobile phone when she was asking him what he wanted to eat. We all laughed at this.
And just like that, the Watson’s wandered into the land of innocence lost, and took a little of it back.
On the way home, Tana said “you know what mum, I think we are just going to have fun”.
And with that, by golly, she nailed it.
The very first post (entitled “no one here gets out alive”) was on the subject of me joining the palliative care program. It was more than two years ago and I was at chemo, talking to them about a few services I felt I needed, mostly counselling, and especially to make sure the kids were doing ok.
The chemo nurse said that it was easier to get these things under one “umbrella”, and I should consider joining palliative care. I totally freaked that they thought I “needed” this so soon, I was still absorbing the shock of my diagnosis. They assured me that it wasn’t like that at all, that yes, when the time came, palliative care were there to facilitate a peaceful death for the patient, but until that point they were absolutely about maximising quality of life. And naturally, the longer you were in the program, the longer you would benefit.
I was terrified, but I did it. And even when they came to do the intake to the program for me, I knew I had made the right decision. They kept asking me what I wanted, what I needed etc, where I had been virtually obsessed with keeping things as good and normal as I could for everyone else. I knew that I could rely on them to put me at the centre of things if needed, even if I didn’t feel able.
Over the two and a bit years I had had bi-weekly visits from the district nurses, really just chats about how I am feeling, how I am coping etc. In the last year or so, that has progressed to occasional call outs to the house for them to administer subcut morphine that I keep at home, if I am in particularly bad pain. This service in itself has been magnificent, as it means that I don’t have to visit an emergency department in the middle of the night, with four kids in tow. They also stepped in on my behalf when an intern doctor told me that I couldn’t take a planned family holiday, for no reason that I could see…I rang them, and they rang the doctor and we were on our way. They will advocate at any time for you to live your LIFE.
Part of the palliative care program is the hospice, of course. I’ve always found it hard to see this as a place that is anything but somewhere you go to die. It’s a building that looms rather large in our life. It is right next to Dakota’s high school, so these days I drive past it every day. It is also the place where Gaz’s ex wife passed away 10 years ago. As he was still very close to her, we were there every up to and including the day she passed away. Because of the terrible memories that it would create for Gaz, I have not yet decided whether I will be there, or at home when my time comes.
So, here I was, a few weeks ago, with my palliative care nurse recommending I go there for an inpatient stay. I was quite sure that I wouldn’t come out, but the state I was in, mentally, and physically, I didn’t know if I really wanted to, so I was very passive, and said yes. The nurse assured me that there was no way I was going in there to die, that 50% of patients go in there to get all their issues sorted out, and then come home much the better for it. I knew it was my only chance for things to change.
The next day I packed a bag and my sister and I set off for the unit. We were both bawling as we drove past the sign to the hospice. It’s just a word, my sister said, we just have to get past that WORD.
As soon as we were inside, it was like a haven. They were all ready for me, and ushered me into a bed in a private room, a nurse at the ready with a syringe of pain medication. The doctors filed past, said they would be in shortly, that they just wanted to get me out of any immediate pain, as how do you have a rational conversation when you are in such a sea of misery. It made sense.
Shortly after, the pain team arrived and all of them gathered around my bed, including my lifesaver, Dr Brian. A very dry Scottish man, I had a bit of trouble working out at first whether he was telling me off or being humourous, I came to like him very very much.
You’ve got to give it to these people, they don’t muck around. Right, the fentanyl patch is helping, but she’s still got pain, let’s whack another one on and double the dose. Tell the nurse she can have breakthrough morphine every hour. Then he suggested starting a syringe driver, which would administer constant low dose morphine. I really did panic then, and said no way…all I could think of was a friend who told us that her doctor was starting syringe drivers, and she passed away only two days later. I really thought those things were only to constantly increase the dose of pain medication until you die. Brian assured me definitely NOT, it was just to keep a constant dose of medication going in so that I wasn’t in pain at all.
I think a lot of us in cancer land martyr ourselves to pain. I know I do. The more I can endure, the more I know I am still in the game. I used to think of decent pain management as “masking” the situation, so I didn’t know what was going on with my body. But the fact of the matter is that nothing was working effectively anyway, it only took them a short time at palliative care to work out that I had absorbtion issues due to having such a short digestive system, and nothing that I had ever taken for pain had done much more than eating a smartie anyway.
I agreed to the syringe drivers (and they were set up immediately – you never wait for ANYTHING in this place), but I said to Brian that I didn’t cope well with anything that came out of my body, tubes, lines, things I had to carry etc. I expected a lecture for being so ungrateful, but he totally understood and said let’s just get you completely pain free and then work out how to keep you that way. He said I was a complicated unit (no kidding), but he was absolutely determined that I wasn’t going to be in pain again. It seemed too good to be true. He said if I stayed there at the hospice until he worked it out, I would be very glad he did.
That night, after a visit from the family, and a very nice meal, I had my first decent nights sleep in probably months. Yes, pain free. I expected to be completely off my face with this amount of medication, but I wasn’t, so that was a relief.
The next morning, Brian was in again. The fentanyl patches were working for pain, but we just couldn’t get them to stick, so as they started to peel away, they lost their effectiveness. We tried another day of sticking them down, but nothing worked, so Brian changed me onto Norspan (morphine) patches, which are made of fabric like a bandaid, and stuck perfectly. Success!
I expected to feel surrounded by death and misery, but the unit is a very peaceful place. Those walking around are in similar places to me, obviously in pain or some sort of symptom trouble, but still well and truly functional. And the ones who were there to pass away are in their rooms, and you don’t see them. The night that the nurses had to leave my room, where they were in having a chat to me, to go and attend to a patient who was dying at that point…well, it was done so seamlessly and peacefully, I found it a bit of a comfort.
Everyone treats you with so much respect. Everyone knew about my book and there was a lot of excitement about it, everyone wanted to come in and talk about it. I really enjoyed this, as I try not to talk about the book nowadays, feeling like I might be boring people rigid by now. But the fact that the nurse manager came and and spoke to me for ages and thought that it was a very important book in a palliative care setting – I was really proud of that. I took a few books in with me as I like to leave them behind in the libraries for people to read, but the nurses insisted on buying them from me and having them signed. It was a nice thing, really nice, and provided a great distraction.
You can ALWAYS get a hug, or someone to have a chat to (or, conversely, put a sign on your door saying you don’t want to chat to anyone). One thing I was struggling with, I mean REALLY traumatised by was the time spent in hospital where no one seemed to care at all about the pain I was in. There were a few REALLY good nurses, very caring women, don’t get me wrong, but they are limited in what they can do. I couldn’t help but think of future times when I worsen, and I have to go in there and suffer like that again. So, the most comforting thing that they could, and did say to me was that unless it was a really acute medical or surgically issue, now that I was linked in with them, I never had to go back there again, and even in the case of needing surgery etc, as soon as I was stable I could be transferred to them to do my recovery there. “you’re ours now”, they said with glee. Gotta be happy with that. They said that any time it felt too much, I could just ring up and say I wanted to come in for a few days, and as soon as there was a bed, in I would come. Mental health wise, probably the best thing that could have happened to me.
During my stay, my baby nephew was being Christened on the other side of town. I didn’t want to miss it, and they were happy for me to go, and set me up with pain breakthrough tablets. It was a huge day – Gaz drove me over, but had a shocking case of man flu that he didn’t want to give to the baby or any of the other kids, so I just looked after my kids all day as mums do…tiring, as I had not done it in a while, but refreshing. By the time I got back to the unit though, it had started to take it’s toll a little bit, nothing major, but I was pretty wiped out. They just took one look at me when I walked in and ushered me into bed, a nurse following about 30 seconds later with a breakthrough syringe. They can anticipate everything you need with just one look. It’s just SO relaxing.
Pain wise, we hit the jackpot with the norspan patches, and fentanyl lollipop sticks for breakthrough pain, and the syringe driver was removed at my request. It works, and it is so simple, two patches I only have to think about once a week, and these lollipops, down from a cocktail of about 12 different drugs, all of which were doing jackshit anyway.
On the day that I decided to discharge home, Dr Brian said that he needed one more day, he wasn’t quite there with everything yet to his satisfaction. I was in a bit of a quandry, as it was Bachelor premiere night (hey, don’t judge me, lol), and my middle girls were so excited that I was going to be home for it. But, I decided that I could have them both stay over with me in the room – relatives and children were encouraged to stay, and all my kids had already had an individual night with me.
So, the night before my discharge found Indi and Tana and I having our very own Bachelor party. Kez had bought them in, with snacks, strawberries, chocolate dipping sauce, and we had the BEST NIGHT EVER. Instead of all the frowning that goes on in the hospital, we had nurses coming in and out all night checking out the fun, wondering if we wanted anything. Instead of remembering that night as something that they missed out on because mummy was sick, it will be something that will be a happy memory for them forever.
The next day I tearfully introduced Gaz to Dr Brian as the man who saved my life. He really did, the whole place did. He said that any sign of there being pain again, I was just to pop back in and he will have it sorted immediately. What, no hanging around in emergency departments for hours or days, only to get no relief anyway? The change in me was staggering.
I’ve been home for two weeks now. I have attended a few social occasions, had friends over, am taking an interest in life again. I’ve done nearly all the school runs, the shopping, sometimes the cooking, lol. Family life is all I pretty much crave nowadays, just the every day things mean the most to me, and they mean the most to Gaz and the children.
Scary as it was, going into that hospice was the best, and smartest (and bravest) thing that I have ever done. And because of it, I have my life back. I am on a new treatment, and will know after scans next week whether it is working or not. Dr Brian patted my hand one day and said that we both knew that he wasn’t sending me home forever, but “for a good period of time, I think”. And while it has this much quality, I am going to hang on tight. I never thought I would have this again.
For my fellow friends with cancer, if you have stage 4 cancer, please join the palliative care program, and please utilise the services of a hospice if you are in chronic and unbearable pain. That constant horrific treadmill from home to the emergency department to get some pain relief and then get home, only to start the whole bullshit over again – you don’t have to do that.
So, where was I?
The day after the tantrum to end all tantrums, I asked the palliative care team to make me their first point of call. The duly turned up in less than an hour, with the doctor is tow, and I told him that I had been laying there for days on end with worsening cancer, and basically no pain relief at all. That they were giving me long acting meds that were delivering into my ileostomy bag in a few minutes and not being absorbed at all. I complained about the tiny amount of meds that they would give me in the hospital, compared to what the district nurses were prepared to deliver at home to get me out of pain, and if nothing improved, I WAS going home. The sprung into action immediately, doubling the steroid dose I was on, saying that would be the most helpful, as that would reduce the inflammation that was pushing my liver tumour against the nerves. He then prescribed a fentanyl patch, absorbed through the skin, not through the stomach, and I realised I finally had people who knew what they were talking about. Doubling the steroid provided almost instant relief.
Not long after, the liver team came around and said that my oncologist had said that if I agreed to remain in the hospital for monitoring afterwards the next day, I could start treatment THE NEXT DAY. I of course agreed immediately. He wanted to see me that afternoon, so my sister came and broke me out of hospital and we pottered up to the next hospital where his rooms were.
I thought I was prepared, you know? I have always known that this treatment provides my last proven treatment for bowel cancer that works (for some people – same as all other treatments). I was always frightened of this day, but my eyes were wide open, he could say nothing that would surprise or shatter me, I had been anticipating this days for years, but anticipating nothing but this day for the last few agonising days laying in that hospital bed.
Nothing can prepare you.
He was his usual calm self, as he had been every other time a treatment that had been working for me failed me. But the air was heavy this time. He looked at me and said that I looked yellow, but otherwise probably better than he expected, and as long as I didn’t spike another fever between then and the next day, I could have treatment. He rang the chemo unit and booked me in, rang the oncologists at the hospital, rang the liver team, ticked all the boxes – and then he turned to me.
“Let’s just crack on with this then Julia. I think it has a good chance of working, you have responded well to everything else.” And then….”this HAS to work Julia. It HAS to. If it doesn’t, it’s big trouble, you know that, don’t you?” I said I did.
And then, I begged him…”but Ben, it has to be quality. It can’t be this. My face has to feel what it is like to stretch with joy again. I have to know another day when I am not afraid. Maybe even a few hours.” I held up the Gucci bag full of very non joyous bile. “This has to go. There is no quality with this, you know how I feel about carrying things around with me, with leads and drains coming out of me. There is no joy with this.” He understood this, and said he really did think we had a crack at quality again, though then he saddened me with his honesty, with things you can’t unhear and said that the surgeon that had had a look at my liver the week before said that he thought the cancer stricture was too tight, the liver too inflammed and that the liver would never be able to be stented. However, he said if it could, I would drain quicker, get better 4 times as fast and we would be on our way. He said that it would break both of our hearts if there was this treatment out there and we knew it could work and we didn’t try it.
More heavy air. He said something to me that he has never said before. “Is there anything you want to know from me this time? Do you want to know what to expect if the treatment doesn’t work? What comes next?” I said no, I did not, but did ask a simple question “if it doesn’t…it will be…..soon”. He said yes, soon.
My sister dropped me back at the hospital and I didn’t go back to the ward straight away, I went down to the cafeteria, where I know everyone (all the ladies that work there Gaz has been friends with for like 50 years, since the school days, and they all care for me very much), I knew they would look after me. The first thing I did was burst into tears when I saw a mother having a simple milkshake with her teenage daughter. It was so fucking unfair. I just wanted to be able to have a milkshake with MY nearly teenage daughter. Was life ever so simple.
Everyone rallied around me, hugs, coffee. I cried and said I thought I was prepared. I thought nothing else could surprise me or upset me. Surely I was bullet proof by now. But I wasn’t, I was absolutely haunted, wandering around outside my own body. I knew the kids were coming in soon, and I just wanted them so badly, but how the fuck could I look at them knowing that I might have only weeks or short months on this earth with them. How the fuck do you look at your children, the most precious things in the world, and imagine them without a mother? Why? Why? WHY. But there is no use asking. The universe had provided no answers before, it wasn’t going to start now.
I knew I had to pull myself together, stop crying, get ready for the arrival of Gaz and my babies. Hey, we still had a chance. I could do this. I went back to the ward and decided to take a shower. Some time during this, the cannula fell out, and it was like a crime scene in there, due to the double blood thinners I was taking to deal with the new blood clot in the liver. I couldn’t stem it and it took the nurse an hour of heavy pressing to get it to finally stop. I got dressed in clean pj’s, and then they came in to take obs. I begged them not to take them then, that I was still too distressed from the bleeding incident and the afternoons news shitfest and they wouldn’t be good, and then they might not treat me the next day. No cigar, they did them, and fuck me if I didn’t have a FEVER. I said COME ON, ignore that, take them in an hour, but nup, back they all come to re-cannulate me, start more fucking antibiotics, any hope of treatment out the window.
Gaz and the girls arrived and we sent them away, as they are not big fans of people sticking big needles into their mum. They came back at regular intervals, but it took this bloke a LONG time to get the cannula in. If quality of life was going to start again, it sure as eggs wasn’t this horror night. In the end I could see their whole visit being wasted and told them to stay, and just not look at the needle. Fortunately, a friend had sent them some American candy from her recent visit and pug socks and they had a ball going through those until they had me sorted again. I got through the visit, hugged them all tight, had a bit of dinner, spewed that up, took a sedative, and thanks to some improvement in pain relief, actually got some sleep.
In the morning they all argued about whether I could have the treatment or not. They were having trouble getting onto my oncologist, but the head of the liver team said that basically she thought I was spiking fevers simply because I have cancer, not an infection and if we were going to wait for these to stop, then we would never start. I laid around all day, and then at 3pm it was action stations – run over to day chemo, they are ready to treat NOW, do not pass go, do not collect five hundred bucks. They didn’t need to tell me twice, 10 minutes later, I was back in the chair, like my arse had never departed the bloody thing! Then, a really lovely surprise – my oncologist said that if I had tolerated it ok, I could go home for a couple of days, until the trial of stent on Monday. Once again, I didn’t have to be told twice, and ran home to spend two days in the arms of my babies and my man and my warm bed.
Day radiology on Monday. I was TERRIFIED. I knew that getting this stent in was the be all and end all for me. I was not going to be able to take this bag everywhere I went for the rest of my life. I have two sets of hands, and they are to hold two babies at a time, not to hold bags full of bile. To some, the bag carrying would have been a small price to pay, but not to me. What constitutes quality of life is different for each person, and that’s ok.
I became a bit hysterical as they set up the knock out drugs. The interventional radiologist said that he really did think he had a good chance of getting it in, and to try and stay calm. It seemed like a few minutes later, I was waking up, and I immediately reached for my waist.
THE FUCKING DRAIN BAG WAS STILL THERE!!!
Cue more hysteria – I think I actually screamed. They were quick to calm me though – the stent was in! They just decided to leave the bag for a couple of days to make sure the stent was working and draining.
A couple of days later I felt good enough to go home. That day was supposed to be the one that they ran through the die to see if the stent was working, but the radiologist was off sick. I decided I could take the bag home for one more day, and they would test it the next day.
The next day Gaz took me to the hospital and they ran me straight into the operating theatre. The whole thing took a few seconds. The radiologist squirted some dye into the stent, even I myself could see it running beautiful through the ducts, he pulled the drain out and sent me on my merry way.
Oh my fucking god, I was FESTIVE. We were on the way! I decided that “normal” life would begin again immediately, and made plans to go out that very Friday night with friends and family – there was no time to lose!
Friday night saw me turn up at Huey’s diner, with lots of gorgeous friends and family in tow. I was running on pure adrenelin. I could hardly eat anything, and sipped on a couple of non alcoholic drinks for a few hours, but my god, was I HAPPY. Then, towards the end of the night, I started to go really downhill. In hindsight, I had pushed it, but it was worth it to just be out and amongst people and have a good laugh. I declined very quickly after that though, and each day at home, I worsened. Sicker, tireder, much more depressed. After weeks of physical and mental torture, it had all become too much, and I doubted my ability to push through this time.
My palliative care nurse visited on the Monday and practically begged me to book into the hospice for a spell, to sort out my pain, to sort out my mental health, to give me a break. I was SO terrified at the thought of going in there. People only go into hospices to die, right? I wouldn’t come out. I wouldn’t feel what it was like to snuggle into my own bed with my babies, with my fella. Nope, I wouldn’t come home again. She assured me that I would, that it was only a word, really encouraged me to get past the fear and go there, that they could really turn this situation around.
And so, I agreed, as nothing could really get any worse. And so began my 8 day stay in the hospice, and the beginning of this story really taking a different and better turn.
On the afternoon after I had had my morning talk with palliative care, about giving up any active treatment, I had a visit from the liver team. They told me they had just had a big discussion with my oncologist and he wanted to start me on the cetuximab therapy the following week. Tubes and drains and no stents and shitty liver function results and yellow and the whole box and dice. I was GOBSMACKED. Could I find something again? Was it realistic to hold on when I had just decided to let go? Was it just too damned hard to hope again?
Also, I knew what it meant. It meant that he was willing to push boundaries, to give it a red hot shot, because there was no question that without it I was going to die, and soon, why not try?
I wish I could wind down the story from here, and say I went home and recovered from the stent and started treatment, but there is much more that it is important that I get out, mostly for the help it may give others in my situation, or even a little understanding.
At this point, I had been laying in bed for days on end with completely uncontrolled pain. There was the pain from the drain site, the blood clot underneath it, the growing met pushing against the liver capsule was causing me to have constant radiating pain from my waist level into my back, pain from just laying there in that rubber bed, pain, pain, pain. Pain relief was completely inadequate and I know for sure that madness that ensued with me wanting to give up treatment was caused in part by my nearly going insane over this.
One of the worst of the pains however was caused by the rigours bought on by the infection. When they called the MET call on me in the morning with a temperature of 39.9, they quibbled a bit about giving me panadol, as it is not the greatest thing for someone with a compromised liver. However, the doctor said it was much more important that I be given panadol to get the temp down quickly than die from septacemia, so they wrote it up and gave it to me straight away. Relief within about 15 minutes. Later that night, after Gaz had gone home and I was trying to settle for the night I started to become really cold again and told the nurse that I was sure my temperature was on its way up again. They called the intensive care nurses down to me – at that point they were having intensive care oversee my care without actually admitting me to the unit. The nurse said that my temp was again nearing 40 degrees and by this time my teeth were chattering, and he ordered that I was given panadol straight away. The nurse said that the doctors had not written up any panadol except for the morning dose and the nurse said that he had just seen the doctors in the corridor and they were to get them to write it up straight away. About 15 minutes I laid there and no one came near me, and then a nurse came in and started stripping the blankets off me and she put a cold washcloth on my head. Now, I know that it was not her fault, she was just trying to cool me off, and I am not proud of it, but this is when I almost completely lost my mind. I threw this washcloth across the room and told her to get me the papers to sign myself out, and I wasn’t staying another minute. I called some doctor a bastard and screamed at him to know why he was torturing me, why do you torture someone with such a short time to live, what was the point? I rang Gaz to come and get me and said I was signing myself out, screaming and sobbing – in 16 years he had never heard me like that I would hazard, it even eclipsed the night I told him to hide the knives. I don’t know what sort of land speed record he broke, but he came flying into the room about five minutes later and got into bed with me, wrapping his arms and legs around me to try and calm me (I did feel sorry for my other ward mates too, I am sure they thought that the mental health unit might have been a better place for me at this point) while I sobbed and howled and begged to be killed, and allowed to die. Finally some panadol was given and when it worked I was able to calm down a little. Gaz stayed in that bed with me until about 3am, and sure as eggs no one dared to tell him to go home.
In the morning I finally took charge of things, and said that I wanted the palliative care unit to take over my care while I was in the hospital. I have been part of the program for more than 2 years, and they know more about pain management than anyone. I have only really been involved through the district nurses though, who come out to home from time to time during times of acute pain and administer morphine, which has succeeded in keeping me from a hospital admission in the middle of the night about 5 or 6 times. This time they involved a palliative care doctor for the first time, and that was the start of the turnaround that I truly believe finds me still here today.
Well, it’s been a long time folks, and it’s difficult to know where to start.
Where was I? Just going in for a simple stent to unblock my bile duct, and back into treatment and life, wasn’t it? Hmm, not quite.
I arrived for my stent procedure on schedule on the Friday morning, expecting a simple procedure and overnight stay at best. I got my first reality check that it might not be so simple when the surgeon said to me afterwards he would go in and have a look, and he would “put a stent in if he could”. Errr….ok, so I was really sick, critically sick, and he might not be able to DO this?
When I woke up, the first thing I asked the nurse was did I have a stent and she said NO. I lost my shit immediately, oh well, it’s all over red rover, but the nurse kindly read the report that she had been left and said it appeared that it hadn’t been placed as it hadn’t been needed, as opposed to couldn’t. This was all a bit tricky to understand, but the surgeon came in just after and said that he had looked all through the biliary tree as it is called, a complex tree of bile ducts that runs right through your liver. There were no blockages there, so no need to stent, but there was of course a blockage of the main duct, the common bile duct, which does the lions share of the drainage. He said he was not the surgeon for this, it required an interventional radiologist to try and create a space to place a stent, through the blockage, which was being caused by a tight stricture of cancer each side of the duct. There were of course no guarantees that this could be done, but I was booked in to return to hospital Sunday night for a procedure Monday morning to try.
I woke Monday afternoon to find myself not with a nice tidy stent placed inside me (hey, I was still hanging on that return to life, ya know?), but a dirty great handbag full of bile OUTSIDE my body that I got to carry around everywhere I went. There were small mercies, the nausea, the itch etc were somewhat relieved immediately, but omg, the pain, omg the freaking BAG. They said the liver was much too inflamed to place a stent but they were prepared to have one more go at getting it inside 8 days later, after there had been some time for healing, and I just had to hang in there for that, and hope like hell.
Sometime in those new few days I totally lost my shit emotionally, and I held out no real hope of getting it back again. I recognised the shift in me, in my mental state and it was the scariest thing that has happened to me so far. I couldn’t go home, the pain was diabolical, I ran constant fevers, had two MET calls, verged on an admission to intensive care, and it was also at this time that very severe liver pain started to set in on my right hand side. They did a CT scan and discovered not only did I have a blood clot under where they had placed the drain, and a life threatening infection, but one of my liver mets had grown quite a bit and was pushing on the nerves of my liver capsule. All.the.time. The only thing that could possibly stop the march of this liver met was the cetuximab treatment and I was nowhere near being well enough to start having it. My oncologist is quite conservative about giving treatment, and has only ever let me have it when I am well in other ways. There was something unquestionable here, something unspoken, except by the quiet nods of the liver and oncology teams….this cancer was going to beat me well before I was ever going to be able to start treatment.
In the “olden days” I would have been able to find something. Some hope, somewhere, or at the very least, a will to live. But somewhere on the fourth or fifth day, I woke up and even that was gone. Palliative care had been visiting me every day, just to provide support, counselling, whatever I needed. Well, this day, I needed them to tell me how to speak to my family about letting me go. I always wondered if I would just know. And if there would be something that kicked it that kept you sane during these times. Well, there is, and there isn’t. As the palliative care team sat on the bed and told me that it was my right to decide when I had had enough, I knew I had. I had had six weeks or so of no quality of life at all, and I already knew during that time that if there was no prospect of getting quality back, then I didn’t want to do it any more. And now, there was everything to fight FOR, but nothing to fight WITH. I cried, a bit, but not heaps. I felt that old familiar detachment from everything I knew and loved, but I couldn’t detach myself totally from the fact that I was making that choice, and those who loved me so would have to be the ones left behind to live with it ….without me.
That afternoon however, began the journey back to hope….just when you think it is gone. I’ll be back with another blog soon to continue the story, it is too much to process in one go.