I’m sitting here at 2:17am feeling nauseous. I woke up about 45 minutes ago and have temporarily given up sleeping for the moment so I’m sipping some ginger tea and starting to write this.
This is my second consecutive day of chemotherapy. Tomorrow (or rather today!) I have a third day at the hospital, (as an outpatient), to continue my immunotherapy. I’ll be doing this every three weeks for the next 4-6 months if all is going “well”. 3 weeks ago my oncologist told me that that the spots on my lungs had grown, as had the main thymic tumour. It seems that immunotherapy is not enough right now. It is never nice to find out that cancer is getting worse in your body. There have been a lot of tears. A lot of brain activity. Many, many prayers. More than anything else, I need a miracle right now.
So what to write? I thought I would give you a look into a cancer patient’s life on the lead up to receiving chemo. (For a second time, this isn’t my first trip on this merry-go-round.) This is just an insight into how I’m processing it.
If you are a Mum who is unfortunately in the same club as me, I’m sorry. Chin up girlfriend. We are strong, us women. You can do this. Even more importantly, if you are a believer, I find so much comfort that rather than saying, “You got this” to myself, I tell myself that “God has got this.” No matter what I feel inside, I can always maintain my equilibrium through the peace of resting in His arms. I feel I can cry out for healing. I cry out in lament that my family and I are walking this journey and know that he is big enough to carry my sadness on his shoulders. This knowledge gives me a joy and that despite my circumstances I can rejoice in the power of my salvation. The title of this blog remains true. Caitlin’s Heart is ever Happy. Even when it’s Sad. The Joy of the Lord is my strength.
So here’s an overview of my past three weeks.
- Travel to Brisbane to receive treatment and receive scan Results.
Thankfully, now that I have reached the cap of paying for my Keytruda, I am able to remain in Toowoomba and only travel 15 minutes to treatment these days. I chose to drive to Brissy with my husband to receive scan results. I just figured I’d prefer to hear anything potentially bad face to face and see the scan with my own eyes rather than having it communicated via Skype, which is now the main way I communicate with my oncologist. Turned out to be a good call.
- Travelled home and then another hour to pick up the children from the family farm.
So, I was teary, but I managed to hold myself together throughout the treatment, but burst into tears the moment I sat in the car. Alex and I processed it together on the way home. We still did our scheduled stop at Costco. I wasn’t sure if I wanted to, but we don’t get the opportunity to go to Costco often, and there was a few things that I wanted, so we decided to proceed. I sniffled in a few aisles, but buying an awesome big bag for my Christmas tree, big boxes of snacks for my kids and of course my favourite Costco treat, pop corners, did help to cheer me up somewhat. Look, if retail therapy works, I’ll take it!
- Told my parents and children the bad news.
The plan had been for Alex to travel to the farm to pick the children up. I’m often feeling a little tired after treatment, so I was going to take the opportunity to have a bit of a rest. So I think Mum and Dad knew something was up when we both arrived. We told them the oncologists report. It’s not a happy time telling your parents the bad news that their daughter is not responding well enough to a cancer treatment. No matter what age. There were hugs and tears. We all remained stoic though. Alex and I were in agreement, and always have been, that we are honest and up front with the children while not trying to overwhelm them with too much information. This has probably been the hardest conversation to update them about. They are getting older and have had enough time to develop a cancer radar that they are now a bit more aware to read between the lines. They are all pretty devastated that I’m going to lose my hair again. They think I look like their “real mum” with long hair, and I’ve just got it back to my children’s approved length.
- Wave Goodbye to Husband as He Drives Away.
OK. So I wouldn’t recommend the farewelling husband bit if you are in a similar situation, but Alex had a bloke’s weekend pre-planned taking our new 4wd and camping on the beach for a mate’s 40th birthday. I told him that I was nervous about him leaving, he had also gone to a pre-arranged blokes weekend back the first time I did chemo and my hair started falling out. I didn’t do well that weekend three years ago on my own. But I knew that he had been really looking forward to this trip and had done so much preparation in the weeks preceding, plus life is potentially going to get busier for him also, so we agreed it would be good for him to have a break. He agreed that I would let him know that if I wasn’t coping he would come home. Just knowing I could push that “panic button” really was enough for me. I didn’t need to call him home. There were some really tough moments where the kids would ask hard questions, and I was really very teary that first couple of days. The kids were trying really hard to be sensitive, but they are just kids, and they can’t maintain anything for extended amounts of time. And to be truthful, when I just had to force myself to get into Mum mode and push my feelings to the back seat, it kind of felt good to just proceed as if everything was normal. It may have included a meltdown or two from a child or I once or twice, but we got through it. Our emotions were all a bit raw. I wasn’t in denial, I was just getting on with the job that I want to remain on the earth to do. The joy of the ordinary. Alex did end up coming home a bit earlier than planned though, and I was really grateful. I was just starting to get to the end of my tether!
- Spend a Weekend with the Kids.
So the kids and I really did have a lovely weekend. I had always been disappointed that Alex was going away on a long weekend. Long weekends are always a great opportunity to do things as a family. Luckily, him being a wise husband and married long enough to take the cues, we took advantage of him being self employed he took half a day off and went to the Sunshine Coast and had a “long weekend” a few weeks earlier. Plus we had a mini-break out on my Dad’s western property. So I was set to spend this time with the kids. Alex had told me to do whatever we wanted and splurge while he was away. When a wife hears that from her Accountant husband, she automatically feels blessed! He’d even suggested we go to a theme park on the Gold Coast. My heart kind of sank at that suggestion, because I didn’t think I really felt like that, but my kids are always super keen to go to a theme park, it’s a real treat. However when you contemplate the possibility of not as many days with your children as you want, all of a sudden you have an overwhelming desire to do whatever it takes to make some happy memories together.
Happily, we came up with a plan that suited me so much better and luckily the kids had such a good weekend also. The kids have been begging me for Disney+ and it turned out they chose installing it instead of going to Dreamworld! Cosying up together with junk food and binge watching the Mandalorian was perfect. We did a few outings. We went to the local swimming pool.
We also visited a park because it’s Carnival of Flowers time in Toowoomba where the kids ate cupcakes that they had piped the flowers on themselves. There was no parade this year so some floats were in the local shopping centre. The kids were sighing that I wanted to look at them there. In the end we didn’t find them, but the kids went home happy because we did find Xbox pyjamas.
I’m always grateful that kids favourite foods are easy to make and we did some treats like waffles and pancakes for lunch. We had also scheduled in a game of laser tag with an aunty and cousins and happily Alex arrived home to participate in the game. We finished with an ice cream from Gelatisimo which is a treat because with five kids it’s not the cheapest ice cream option! My favourite memory of that trip was all the chocolate dripping off Toby’s happy face.
I received the news on a Thursday afternoon. All of these activities took us through to the end of Monday. I’ll explain where my focus was during the rest of the three weeks before treatment began in a further blog. Us Mums need to be prepare when it comes to big events, if we can. But for me it was also acknowledging that I can’t do everything and doing as much as I could. If I have any advice to give if you are in the unfortunate position of preparing for chemo, it’s be kind to yourself. Choose what is most important to you and pace yourself. And in the meantime, make as many nice memories as you can!!!