Update

Oh dear. I continue to be neglectful of this blog. My sincere apologies, because I feel like I really did a teaser last time I wrote. I provided an update, left on a cliffhanger, and then never returned to tell you what is happening!

Lets just blame COVID-19. I think everything in 2020 can eventually circle around to that excuse, right?

Seriously though, my last post was just before everything got crazy and blogging fell down the list of priorities, especially with the increased amount of time the children were at home thanks to schooling at home. And as I’ve always said, once you’ve lost your groove, it’s kind of hard to recover.

So to recap. Prior to Easter I had discovered that even though the Keytruda was working on the main thymic carcinoma tumor, I had lesions growing on my lungs. A PET scan soon after I wrote the previous blog revealed these lung cancers were continuing to increase in size, so it wasn’t pseudo growth like I’d hoped. Not good news. Thank goodness we have access to amazing medical procedures in this country. I received a very short treatment of highly concentrated radiation which was very targeted straight into the actual tumors. I needed to travel to Brisbane four times within 2 weeks for this, but the good news is that my oncologist was thrilled with the results as the cancers on the lungs are practically gone. The smaller of the two is completely gone and we are hoping that the next scan will show no activity left for the larger of the two lumps.

Last day of radiation! (All suitably attired in dreadful hospital gown!)

So that leaves me continuing immunotherapy every three weeks. That scan also showed some slight shrinkage around the outside of the central tumor, so it was encouraging to see that it is continuing to work. I’m praying that next time the scan shows increased shrinkage. (Hopefully a bit more than just “slight”.) I still receive it every three weeks. The most exciting development here is that in June we have finally reached the financial cap set by the drug company that produces the medication. Once we had reached $60 000 (plus some more in pharmecutical fees) the drug company has a compassionate fee exemption, so now I will never need to pay for Keytruda again. It is a huge relief that our families savings will not continue to plummet, so I’m very thankful for Merck’s compassion. Especially since the treament may last the rest of my life. (Which will hopefully be a very long time!) We feel very blessed that we were able to find the money to receive the treatment, but I hope that in the future in Australia it will be included on the PBS so other families will not have to take such a huge financial hit. Even without having to pay for Keytruda, we will have hospital excesses to pay and I also need to pay for PET scans which aren’t covered for Thymic Carcinoma, yet are vital for tracking my progress. The covered CT scans just don’t show enough information to make informed decisions about treatment. Then there’s all the added medical expenses. (Like radiation which cost a pretty penny.)

Please don’t be worried about us, but I have mentioned numbers just to increase awareness of the huge costs associated with having a rare cancer as opposed to a more common cancer. There are some people out there who can’t access the funds to receive their choice of treatment, and I can only imagine the heart ache for them and their family.

The other good news is that I have been able to move my treatment to my hometown. It does mean Skyping my doctor rather than seeing him face to face, but so far that has been working fine. I think I will still travel to Brisbane to receive scan results. It has made life much easier. As nice as it was driving to Brisbane with friends and family and spending extra time with some people I love, it is so much easier not to inconvenience anyone and not to lose so many hours travelling. This way I can put a load of clothes on the line, pop up to hospital, call into the grocery store on the way home, then come home, do some chores, pick up the kids and spend the afternoon with them. Once I even did a meeting at night, but I’m not in a hurry to repeat that. I am exhausted after treatment and will often go to bed early that day, so I felt like I needed toothpicks to keep my eyes open in the end after going out at night. But altogether the quality of life that I am experiencing is amazing. I can sometimes have mild fatigue, but other than that it’s business as usual! It is so good to feel healthy while undergoing cancer treatment.

The other positive about receiving immunotherapy during 2020 is that I am not immune compromised, so I am not at increased risk of contracting COVID-19 when I am in the community. Of course I have more reasons than most not to want it, because it would halt my treatment during recovery time. However I have been able to continue with life which would have been very complex for a busy Mum if I needed to take shelter within the home for the last several months.

So apart from all those health things, life has been our usual sweet happy mess. Alex wouldn’t describe my mess as sweet or happy, so maybe that’s not a great descriptor. Let’s just say family life is happy and messy, and so is the house. After a period of schooling at home the children are very happy to be back at school with their friends and excited about learning in a classroom again. Some of my children did better at schooling at home than others, but all prefer the classroom context, so we are loving that they are at such an amazing school which creates a learning environment which is such a source of enjoyment for them.

Soccer season has begun again. Alex and I did kind of enjoy the break from the sidelines, but it’s great for the kids to be back running around again. We only have two playing this year. A third is loving gymnastics and the remaining two children need to choose another sport to participate in.

The Accountant is keeping himself busy. Business is doing well at this stage, but he’s always on the lookout for small business clients, so we’re always praying that the right people find him. I’m on the teaching circuit again and enjoying relief teaching work. Of course this has been in very short supply this year, but hopefully I can pick up a few more days before the year concludes.

One of the highlights of the year since I last wrote was travelling to Cairns to belatedly celebrate my father-in-law’s milestone birthday. It was so good being able to travel, and Cairns is always such a beautiful location to escape to.

With our extended family at Palm Cove.

I hope you have all been doing well during this crazy year called 2020?

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