Let’s start with everyone’s favourite topic: statistics. In particular, those related to the NZ cycling challenge.

Distance covered – 202km
Days cycling – 5
Time spent cycling – 12 hours 40 mins
Elevation (climbing) – 1422m
Money raised by our team – $9879.70
Money raised by all teams – $37000

Thank you to everyone who purchased: wine, socks, jam, cycling gear or donated to our portals. We are completely overwhelmed by your support and generosity.

This month has flown since my return from NZ and I am sitting here in our Oncology Dept receiving my 7th dose of immunotherapy. This tips me over half way and I am pretty excited to cross another one off the list. As with every month, there are appointments to be upheld and bloods to be taken. Rod and I are just cruising (riding bikes with Pip, relaxing by the pool) with this routine and it’s not stressful until we add scans into the mix.

Rod threw his Oncologist into a bit of a spin last month by telling him we’re going travelling overseas for 4 months in September. Subseqently, Rod was orderd an early PET scan to fit in with our departure date. Rod caught the train to Melbourne, had the scan at Peter Mac and caught the train home. The scan was reported on a few weeks later at Rod’s next appointment and we are pleased to announce there is no change from his last scan 5 months ago! His tumours not very active, there has been no additional growth which is known as stable disease. If Rod was stressed about receving these results he didn’t say nor did he show it.

The day he recieved his results, I was in Albury having my own PET scan and Brain MRI. Whilst I was not stressed about having the scans (I dozed during the MRI, fell asleep after the trace injection and before the PET scan for a total of 45 mins) I was very stressed about receiving the results. If I’m honest, I’ve been starting to feel a bit fatigued a few times per week – it’s not too bad, but I’m just really tired some afternoons. I’ve had a bunch of excuses over the past few months to explain away my fatigue: unsettled sleep, big day at work, age, not enough exercise, too much exercise… I’ve now reconigsed it’s just the immunotherpahy catching up with me. So far I am not having any immune reactions so if fatigue is my only side effect, I’ll take it!

Back to my scanxiety. Keeping busy helps. Thinking about the ‘what-ifs’ is very unsettling. My overactive brain continues it’s ongoing battle of “rational V irrational” thoughts. School holidays meant Rod could accompany me to the Oncologist appointment. The heart rate data from my Garmin shows exactly how I was feeling! There was nothing on the pet scan – I was so relieved I nearly cried! The brain MRI hadn’t been reported on, but my Oncologist had a quick look at the images and couldn’t see anything (my massive brain excluded…)

My dermatologist has been treating a few little solar keratosis sites on my forehead and bony bit under my eyes (for the non-medical folk). This has involved me putting chemo-infused ointment on my face twice a day for 3 weeks. By the middle of the third week, I was growing tired of this as my face was pretty tender.

Dramatic Me to Rod: “Oh, my face is the worse! It’s hideous! I”m so sick of this!”
Calm Rod to Me: “It’s just a couple of little red spots, you’re OK”
You’d be surprised how often you touch your face! It’s back in the healing phase now and I’m sure this won’t take too long to get back to normal.

We’ve needed to do a little bit of problem solving with Rod’s monthly immunotherapy injections for our long service leave travel. Basically, we needed to find a sturdy insulated bag to fit 3 injections, plus cold bricks. We’ve been communicating with the drug company who’ve actually told us we can keep the medication out of the fridge for up to 72hrs! Before this, the rules were very strict: ‘keep between 2-6 degrees’ and ‘no longer than 15 minutes out of the fridge’ – and this kind of thing. Rod has been on the phone with the Nueroendocrine Tumour clinical nurse consultant who has also made some suggestions.

The plan for the next month is bloods and treatment (for both of us). Next scans are in 3 months (PET for Rod, CT for me). We will continue planning our LSL holiday and at some point in the next 4 months, I’ll ressurect the travel blog.

Thanks for checking in with us and keeping us in your thoughts,

Love Bel (and Rod)