This is possibly the longest I’ve gone between blogs. And there’s plenty of reasons why that is. Not many are good reasons unfortunately…

To recap from my last blog back in August 2021. I’d started Immunotherapy at Epworth after being told there were no further options for me at Peter Mac. Immunotherapy was much nicer to me initially, less side effects, no nausea or yuck tastes. I was feeling good nearly every day and was driving us home from treatment sometimes and even going out for a walk once we were home! It was great. But that didn’t last too long. After not even a month, I had to reduce the dosage of my tablets as it was causing diarrhoea. And that plays a huge part in quality of life. It was concerning to be lowering the dosage so soon, but we trusted my oncologist and hoped to be able to go back up to full dose in no time!

Turns out I didn’t get too far in before another pesky Krukenberg tumor in my remaining ovary reared it’s ugly head for the 2nd – AND FINAL – time. By the end of October I was booked in for surgery to remove it. There was mention that if any other cancer was in the area, they may be able to remove it at the same time and I signed off on that. The surgery itself was successful, I’d gone private so that I could have the same surgeon as the previous year and also be able to stay in hospital for recovery overnight. Well, luckily I did as there was a complication with my drain tube so I ended up having to go back into theatre just a few hours later to have that fixed. That’s when I started feeling worse and barely able to eat anything. We managed to get an exemption for Anthony to be able to come and visit me under compassionate reasons. I was quite scared and anxious about it all and just needed him there to give me hugs and hold my hand 🥰 I ended up spending a couple of nights in hospital recovering before heading home with Anthony and my mum. A few days later, my beautiful Aunty Cathy – who is a nurse – came to stay with us and help look after me as my dressings needed changing. Lucky she was there to help out as one of my wounds wouldn’t stop weeping and we had to constantly change the dressings, it was very exhausting. On top of already being exhausted from not being able to lie down to sleep and experiencing a 6 day power outage at our house. Worst timing ever for a storm to hit, especially when our toilets stopped flushing properly 😳

So recovery from surgery was harder than anticipated, purely due to the 2 surgeries/anaesthetics in one day. Add in constant bleeding for at least 4 weeks and it’s safe to say I was extremely drained. When I was able to restart full treatment again that was great, but unfortunately it didn’t help slow the bleeding so I ended up having radiation to a tumor on my uterus. This was found during surgery, but because of it’s location, it was complicated and removing it would have caused me to be off treatment for approx 8 weeks rather than 2-4 weeks, so the decision was made by my surgeon to try radiation instead. Radiation itself was quite bearable for me. It was 5 days in a row at the hospital for approx 5mins in the machine. Day 1 involved me getting a Prep CT scan to determine exactly where the cancer is, then getting tattoos (tiny dots) to mark my skin where they needed to line me up every day to make sure I was in the exact right spot. I didn’t feel anything but it wasn’t comfortable getting up and down off the machine when I was still bleeding really heavily. Apart from that it was fine and over quite quickly. Effects from radiation aren’t immediate so I had to wait up to 6-8 weeks to see any difference. Thankfully the bleeding reduced, but still spontaneously came and went which again, really impacted my quality of life 😢

On the 21st December I went in for my treatment and was due to get an Iron infusion as well. We started the Iron infusion and once it was finished I got a sore abdomen, went pale and felt faint. The decision was made to not go ahead with treatment that day and to admit me as an inpatient instead. So I spent from the 21st – 25th December in hospital. I was given Potassium, Blood and Fluids, and then put on a clear liquid diet before fasting for a sigmoidoscopy. From there they found colitis – which can be caused by immunotherapy. So it was onto a bland diet that’s easy on my digestive system. Think yoghurt, custard, jelly, broth, soup, puree foods… And once I was discharged on Christmas Day, I got to feast on mashed potato, Anthony’s freshly caught fish and maybe some cream from on top of the pavlova! Pretty exciting Christmas spread for me right there… Christmas was so strange. It was meant to be at mum’s house with all my family from Bendigo. But with me being in hospital, and my poor Nanny also ending up in hospital after having a stroke (a weak leg and double vision is thankfully all she suffered), we decided to postpone our Christmas til we could all be together to celebrate. So it was just Mum, Dad, Anthony and I at my place, and it was so quiet!

I’ve been on steroids since that hospital stay, which meant a major lack of sleep. And there was actually a day where I was awake for 23 hours straight 😳 Over NYE we were lucky enough to have a couple of close friends come and visit us (after finding the elusive RAT and testing themselves before arriving – Thank you friends!) and it worked perfectly for me and my steroid energy! I was the last one awake at NY and then spend most of New Years Day cleaning up and running around the house full of energy while everyone else was napping or relaxing on the couch!! But I had such a great time with our friends here, no pressure, just relaxing, and catching up after such a long time without seeing anyone!

But then on the 6th Jan I was admitted back into hospital as inpatient as the bleeding had returned and overnight I’d woken up with nausea & vomiting, shortness of breath, was very pale and hot/cold even though my temperature was normal. We called my oncologist who organised for me to be admitted and my 5pm that night I was back in hospital. I had to get a PCR test done before anything could happen so everyone coming in to my room had to wear full PPE. I ended up getting a Lung CT to rule out any blood clots in the lungs. So even I was kitted out in full PPE. Hats off to all the nurses and doctors that have to wear that for 12hr shifts. It was immediately hot and uncomfortable with all that on. I don’t know how they do it. The CT was done at 11pm and the results were back and all clear by 1am. The next morning I had an ultrasound on my legs to rule out blood clots there (potentially due to too many tablets trying to stop the bleeding), and all was clear. Such a relief to rule out some major things. But we still didn’t really get any answers, just that the cancer is causing the bleeding and when bleeding flares up, my bowels seem to have issues too. I asked to stop IV fluids as it was causing my stomach to bloat ridiculously, and over Christmas I ended up having to take diuretics to remove the excess fluid from my abdomen, which attributed in part to me losing 5kgs in 5 days. A weight loss program I didn’t want to be a part of to begin with, that’s for sure! No answers were really found during this stay, but at least some potential issues were ruled out. I was discharged on the 9th Jan and went back home to relax and that’s where I stayed. I worked out that over Dec/Jan I didn’t leave the house for 7 weeks, apart from hospital and doctors appointments, and the occasional beach walk when no one was around. It was a very stressful time for me having to worry about covid and the risk to me being out in the community with Omicron running rampant, and with it being peak tourist season here in Rye.

Luckily we have amazing friends who we were able to visit for a day and then also my bestie drove down from NSW to come and stay with us for nearly 2 weeks! It was perfect having them here and not having any real plans to go out and about anywhere. Lots of backyard pool hangs (inflatable pool!), walks and games, plus just enjoying each other’s company after nearly a year had passed since seeing them. We even managed a perfect day out in the boat 🚤 And I did venture out to a winery, as well as strawberry picking, which was lovely, a nice gentle way to get back out to the big bad world!

My next visit to the oncologist and I mentally felt the best I had in a while, mostly due to the socialisation aspect I think! There were some concerns that my tumour markers had increased, and so we booked a PET scan for the 14th Feb – Happy Valentine’s Day to me 💗 And on the 15th Feb when I saw my oncologist, I wasn’t shocked to hear the words “Cancer has progressed and we need to get you back onto chemo”. I’d had a feeling the past few weeks that things were starting to go in the wrong direction. My quality of life was going downhill. Lots of new side effects starting to pile up and make my life difficult. I couldn’t plan a walk or anything without knowing exactly where a toilet was, and my hands had started to get sores on them, making it near impossible to do anything with them without pain. I had to wear gloves to be able to use cutlery and pens. So it wasn’t a shock to find out I’d be finishing up Immunotherapy and restarting Chemo. Immunotherapy’s job was to work long enough to give my body a break from Chemo and allow it to reset things so that when I did need to get back onto chemo, it would work. So I’m thankful for the 6 months that Immunotherapy gave me! We just needed a few days to get the new Chemo treatment organised, so with no treatment happening that day, Anthony and I decided to venture out and have a lovely lunch at an outdoor pub, followed by a walk along the foreshore. We were both feeling pretty good about getting back onto Chemo as it’s a combination of what I originally started on – just over 3 years ago. Bevacizumab (Avastin), Oxaliplatin (the one that makes me sensitive to cold and gives me neuropathy) 5FU (Baxter take home pump) and a new, but very similar drug to previous, called Oniyvde. That’s the one that’s not funded for me as it’s normally used for Pancreatic Cancer patients, but is currently undergoing trials for Colorectal cancer patients and showing good results. It costs $1500 every round I have, and I’ll be having up to 12 rounds of this particular treatment. Soooo maximum $18,000 to cover this treatment. Hopefully my health insurance is able to cover some of the cost like they did previously, just waiting to find that out 🤞

I’m writing this on Day 2 of Chemo #1 (Total of 54 chemo’s to date!). And I’m happy to report that I’m feeling pretty good! Yesterday’s treatment went well, although I was given Ativan to help calm me as I was a bit anxious/stressed about not being able to have Anthony with me for Chemo again, especially the first round. Just because I’ve done it 54 times before + 11 Immuno rounds, doesn’t mean I wasn’t completely scared about some weird reaction or side effect kicking in straight away. It was a tough day and I’m glad to have got through it reasonably well. Just a bit tired, but obviously not too much as I still managed to walk a lap around the oval last night 🚶‍♀️🚶‍♂️

The day before chemo restarted, I used every last bit of energy I had to clean and organise the house and make sure everything was sorted before treatment as I honestly didn’t know how I’d feel. We did a 3km walk in the morning and I did a a reformer workout too! We even went out for a beautiful dinner date that included ice cream and another short beach stroll. I got into bed having done 13,000 steps and feeling pretty damn impressed with myself for having such a great “normal” day 🥰 Here’s to more days like that coming up 💗