Don't dream it's over
Hey now, hey now
When the world comes in
They come, they come
To build a wall between us
We know they won't win" - Crowded House
It's been a while since my last blog post and life update. Things have been a little crazy around here and I just haven't really felt up to writing. But I'm back and there is so much that has happened.
"It's important we start chemo as soon as surgery is over"
Since my last surgery, the plan was to have three cycles of chemo without the Oxaliplatin to give my liver some time to heal and to have a pressure test to make sure my liver had healed and we could move ahead with surgery two. I finished my three cycles of chemo with zero issues. At the start of October, I went back to Auckland to have the pressure test done. I would like to say there were zero issues with this, but that would be a lie. My appointment was at 12 and they mucked me around for almost an hour, had trouble accessing my port-a-cath (apparently they didn't have the correct sized needle for it), and spent ages setting up the treatment room. They shoved a massive tube into the artery in my neck and spent the next hour blowing up a balloon and deflating it to test the pressure. After pulling the tube out, the radiologist realised that they had only tested the right side of the liver. She spoke to one of the liver surgeons who said they also needed the left side tested. So they wheeled me back in and spent another hour testing the left side. To say I was annoyed is an understatement. And to say that it didn't hurt, would be a massive lie. You try having a massive tube placed in your neck and having someone tug on it every couple of seconds...
About a week later, I had a check in with Dr Kennedy which also included an updated CT scan. No matter how many scans I have, it never gets any easier. You constantly worry that something has changed, that things have gotten worse or haven't changed at all. Your mind goes to all kinds of places that you know it shouldn't but you can't really help it. But this time, my worrying was justified... My liver was looking better, and Dr Kennedy was sure surgery would go ahead. The bowel tumour was looking better. However, the tumour in my lung had gotten slightly bigger. I almost broke hearing those words. But Dr Kennedy wasn't overly concerned. It has just increased the need to get back on the full dose of chemo as soon as we can. We also spoke about whats next in treatment. I am now looking at bowel surgery pretty soon, as well as radiation to my bowel and potentially radiation and surgery to my lung. While I'm glad that we are now able to use other treatments, it means that I am on this journey for longer than what I had hoped. Because we are now talking about radiation and when you have radiation to the pelvis area it can completely destroy your ovaries, I decided I probably needed to broach the fertility subject with Dr Kennedy. I had tried talking to him about this when we first came up with my treatment plan, but due to how serious my diagnosis was, we didn't have time to investigate anything relating to fertility....
"Are babies in my future?"
Kids and fertility has been a pretty sore subject for me over the last few months. Its quite hard to come to terms with the notion that you may never be able to have kids and to have that choice be taken away from you, makes it even harder to deal with. When I was first diagnosed and chemo was booked in, Dr Kennedy mentioned that chemo can make you infertile. So while it wasn't 100% that I wouldn't be able to have kids, there was still a big possibility that it could happen. So for my own piece of mind, I needed to know for sure. My amazing nurse Aleisha was in this appointment and having her there made approaching the topic so much easier. Dr Kennedy then referred me to a fertility specialist and within a few days of this appointment, I was booked in to meet with the fertility specialist. We talked about egg harvesting and freezing, but as I've already had chemo this was not the best option. So option number two. We relocate my ovaries into my chest so that when I have radiation to my bowel, my ovaries will be out of the way and will still be in working order. She organised with my liver surgeon Adam Bartlett to have my ovaries relocated during my liver surgery. The fertility specialist also tested my egg hormones to make sure that I am still fertile and it turns out I am. She also reassured me that because of how young I am, the chemo is not likely to make me infertile. So for me, it was a really successful and reassuring appointment and has definitely lifted that weight off my shoulders. It's amazing the kinds of things that they can do to help preserve fertility. When the fertility specialist mentioned relocating my ovaries I thought she was crazy and taking the piss. But apparently not. They do this kind of thing all the time and its the best way to preserve fertility when radiation is on the cards. So if anyone has plans to punch me in the chest, please try to remember you'll probably be punching me in the ovaries...
"Liver surgery round 2"
After having the pressure test and the updated CT scan, the wait to hear about surgery two was excruciating. But I finally got the call that surgery was to go ahead on the 24th of October. I knew surgery this time round would be more complicated. But at least I knew what to expect in terms of recovery. So on Labour Day we made the trip back to Auckland City Hospital. I was wheeled into the operating room around midday, leaving poor old Mother Duck to wait around. After almost four and a half hours under the knife, mum got the call that surgery went well but I would be in the High Dependency Unit due to how tough the surgery was. But I wasn't having any of that. I woke up feeling amazing and the recovery staff were more than happy for me to go back to the ward instead. So they successfully removed all the cancer from my liver and I am now left with about 30% of my liver. They also successfully relocated my ovaries to my chest. Additionally, my gall bladder was removed because when my liver starts to grow back, the gall bladder would be in the way and halt the growth so they whipped it out. I was up walking around the day after surgery and the day after that, the epidural was taken out. I recovered relatively quickly from the surgery but was seriously struggling with eating. Apparently this is very common after losing most of your liver and even now, I'm still struggling to eat three meals a day or to even finish an entire meal. After a week I was sent home to finish recovering, with an appointment to restart chemo three weeks after surgery. However, my body had other ideas. After a week of being home, I started to get quite sick. I was having hot and cold flushes, pain around my incision, nausea and my incision was weeping in places. Back to Auckland City Hospital we went on a Friday afternoon. After blood tests and a CT scan, I was told my primary tumour in my bowel was infected and I needed to be started on IV antibiotics but that they would try to get me home as soon as they could. Come the next day, I was being told by a completely different doctor that I had a deep muscle infection, IV antibiotics to treat it, that they don't like to discharge people on Sundays (which was a lie, they were discharging people left, right and centre), that they wanted me on IV antibiotics for at least 48-72 hours before letting me home on oral antibiotics but that IV anibiotics were probably over the top and I didn't really need them. So by about midday on Sunday, I discharged myself and wasn't even given oral antibiotics cause apparently I didn't need them. I spoke to Dr Kennedy the next day and found out from him that my incision was infected but the IV antibiotics did treat it. Moral of the story - don't go to hospital on the weekend as they don't know what they are talking about!
I'm finally back on FOLFOX (the full chemo dose) and will be going in for a second cycle this week. I meet with Dr Kennedy on the 18th of December to find out what's next. I've just enjoyed two weekends in a row with visits from some of my amazing friends. These friends traveled hours just to spend a day or two with me and I am forever grateful for how amazing these people are and how they willingly take time out of their busy schedules to see me and make my day/week/month. After the last few months of constantly feeling knocked down, I'm starting to feel like I can keep going. I'm starting to get my life back and not feel like things are being taken away from me. And I'm starting to feel like the cancer wont win and that maybe I don't have to...
dream its over!
