Diving straight into it today… My latest scan wasn’t good at all. I was due to get results on the Monday but on the Thursday afternoon my oncologist called me, which he never does, and I knew instantly that it was bad news… We were told that chemo hadn’t worked and my cancer has progressed. On top of that, Peter Mac could only offer me one more drug and to quote my oncologist, “it doesn’t have very good results”. Absolutely shattering to hear those words. Needless to say, Anthony and I spent the next few hours crying and hugging on the couch. It was a very similar feeling to when I was initially told that I had cancer. Our world was crushed and it was the first time I actually thought “this could be the end” 😭

We needed that night to ourselves to process this news before telling anyone. It was so tough to have to tell my family. But as usual, their support was unwavering. Over the weekend I spent a lot of time doing research into different drugs, different treatments, clinical trials and just anything that might offer us some hope. I talked to fellow bowel cancer patients who gave me more information than google could and I’m so appreciative for them taking the time to help me when they are going through so much themselves. By Sunday night, I had a massive list of potential trials & drugs to talk to my oncologist about and see if there were any other options that could help me. I wasn’t super confident that Peter Mac would be able to offer me any of these things, but I also had an appointment with the private oncologist on Monday afternoon and I guess we were holding out hope that he would be able to help me.

So when my oncologist at Peter Mac went through my list and crossed most of the drugs/treatments off, I wasn’t necessarily upset or sad. I guess I was just a bit flat. Driving across Melbourne to see the private oncologist, Anthony and I were fairly quiet in the car, just keeping everything crossed that we would get some good options 🤞

We sat down with the private oncologist and almost straight away he proposed a treatment that sounded positive! It was something we had discussed at Peter Mac, but they couldn’t offer it to me as it was a very expensive treatment and would have to be self funded. We could apply for compassionate funding, but according to Peter Mac, it’s rare to get approved. So our first thought when the new oncologist brought it up, was ‘how much is this going to cost?’ and ‘will we be able to afford it?’. Well, it turns out that this oncologist has 5 patients on this treatment and ALL of them had been approved for compassionate funding! This was great news and I felt hopeful that I would be approved too. When he asked me if I’d like to start treatment as his patient, I didn’t need time to think about it. I looked at Anthony and we both said yes! To think that just a few hours earlier we were given no hope, we were so thankful for this doctor and his willingness to think outside the square in terms of treatments.

To give you an idea of why we need compassionate funding, one drug would cost us $6600 per month. And the other one would cost $30,000 per month. CRAZY! No idea how the drug companies can get away with charging people that much money. We certainly wouldn’t have been able to afford $36,000 per month to cover my treatment for very long, that’s for sure.

We were even more impressed with this new doctor and clinic, as when we went to reception to pay for the appointment, I found out that I was already booked in for my next appointment and treatment was booked to start the following week. Talk about efficient! They’d even called ahead to let the hospital know that I’d be coming there in the next hour to get my bloods done and fill out some paperwork so that I’m good to go when treatment starts. Everyone at the hospital was really lovely and welcoming too.

The next day, Anthony and I were just relaxing at home (no where else to be, because of lockdown!) when I got a phone call from the oncologist’s office to let me know that my funding had been approved!! WOW! We were ecstatic! We were hopeful it would be approved but definitely didn’t expect it to be approved so quickly. Talk about efficient. We jumped around, hugged, cried happy tears and then made a few calls to family to let them know the great news! Such a weight lifted off our shoulders for sure and you better believe we celebrated with a glass of vino 🥂

Now we just had to wait another week to get treatment started. I tried to make the most of the week off and upped my exercise – as per my new oncologists orders! I added reformer pilates and strength training back into my routine, as well as daily yoga and walks when the weather was nice! We were also lucky enough to get out on the boat one day too 🤩

That brings me to Treatment Day! It started in Ringwood East for my oncologist appointment, which went well and we just went over the side effects and treatment plan again in some more detail. Then a 15min drive to Epworth Eastern for my treatment. Everyone was so wonderful, I was asked if I wanted any lunch and then was given delicious sandwiches, fruit salad and strawberry cheesecake – so good! Anthony was allowed in with me just for the ‘education’ part of my treatment today, so I was alone for the majority of my treatment for the first time in a long time! Due to covid, this hospital doesn’t allow any visitors at all, which is understandable. And I got through it well. And lucky for Anthony there’s a beautiful park across from the hospital so he got outside for his exercise today while I was stuck inside!

So I have treatment every fortnight – it’s immunotherapy not chemotherapy, so should be tolerated well and give me less side effects. Immunotherapy is done via IV infusion through my port, and I also have a targeted therapy which I take in tablet form every day. The main side effects to look out for are a skin rash, diarrhoea and fatigue. But the list is endless… My oncologist has encouraged me to continue exercising as it may help combat the fatigue though.

I’m looking forward to seeing some great results soon, as the pain in my abdomen has been slowly increasing over the past month or so and it’s quite intense and uncomfortable. Hopefully this new treatment kicks in quickly and I feel less pain. Although, night 1 of my new treatment involved quite intense tummy pains 😣 I was sitting on the couch all night with 2 heat packs on my stomach to try and reduce the pain. By 10.30pm I had to take panadol to help. Luckily the next morning was much nicer to me and the pain had subsided quite a lot. On top of everything else, I’m still trying to hold on to my hair! I finished the drug that causes it to fall out, about 3 weeks ago, so just keeping everything crossed that it doesn’t all fall out. I haven’t washed it in over 6 weeks just to try help. Lockdown is handy for something, I haven’t needed to do my hair for any events or outings 😂

So there you have it. An insight into the past few weeks of our lives and the massive rollercoaster ride we’ve been on. Let’s hope we can get off the ride now and just continue to walk through life rather than be out of control on that never ending rollercoaster!! 💗

PS. Please get vaccinated if you can. Well done to all of my friends and family who already are 👏