Thank you, dear friends, for continuing to check in with me. It’s a month since my first round of immunotherapy and things are going well. Grab a cuppa and read on for a very detailed update.

My Leg

My leg has completely healed and has, what Hamish is calling, “A big dip” in it. Scars remodel and whether the big dip levels out remains to be seen. The site isn’t sore and hasn’t stopped me from doing any of my usual things (walking, bending, riding, shopping, working). The scar is pretty long, at just a tick under 10cm. Other notable scars of late:

• Tendon repair 6cm, 4cm and 3cm (3 different sites for one repair)
• ORIF (wrist fracture repair) 8cm

Lead up to Round Two

The week of treatment is busy with blood tests done and oncologist appointment. Had my bloods done Monday morning, but will reconsider my timing due to the 12 people who were in front of me at 0800! I finally made it into work (have I mentioned how amazing my boss is??).

It’s a short 2-minute drive to the Oncologist for my Wednesday appointment. Here we discuss blood results (normal) answer any of my questions, catch up about how I responded after the first dose and give me referrals for scans and bloods in the future. It’s 3 months since my last set of scans, so I’m due for a CT and am booked into that in a couple of weeks.

Nivolumab

In the days immediately after my first treatment, I felt fine – nothing happened. At all. I woke up each day, lay in bed and completed my own head to toe assessment. I kept waiting for something: headache, gut, fatigue…nothing. I just continued to pick up my usual life and routine.

This feeling of wellness has remained, so much so I have practically forgotten I have a diagnosis! Twice my face flushed after drinking a light Peroni, but it disappeared and hasn’t happened since, so I’m not counting that as anything.

I had my second round Thursday just gone. One of my besties Trudi was here, so we’d had lunch and then went to my appointment together, laughing and chatting and generally having a way too fun time for two people in an Oncology department. As we know, life is totally unpredictable; 6 years ago it was Trudi in the hot seat and me in the support person’s chair.

The treatment went smoothly, except for an episode of lower back pain, which coincided with me reclining my chair and half of the nivolumab being infused. The team stopped the infusion, rang my Oncologist and confirmed it’s not an uncommon reaction to the drug. I had some antihistamine, waited 20 minutes and the team re-started the infusion at a slower rate. No back pain after that.

My goal is to get through as many of the infusions as I can. Sometimes they’re ceased before the full course (of 13 not 12 treatments as I had previously stated) due to side effects which are detrimental to the health of the patient. Whilst I haven’t had any side effects, it doesn’t mean I won’t have any in the future.

Dermatologist

Tom referred me to a dermatologist in Melbourne. At times they consult in Wangaratta or Mansfield, so I shouldn’t need to go to Melbourne in the future. This is next Friday and the purpose is ongoing skin surveillance.

Work

I am back working my regular hours without any issue. I just clocked up 10 years at Northeast Health and received my pin and certificate at the annual awards night Thursday.

Rod

Rod headed to P Mac in Melbourne for his 3^rd PET scan on October 24. He has a particular PET scan using a Gallium dotate trace which is very specific for neuroendocrine tumours. It was a week between the scan and getting results back. Here’s a new word for you: scanxiety. We were a bit worried about these results, as the last PET scan had shown some disease progression.

Rod’s appointment is via telehealth with his Oncologist from P Mac. Whilst we were waiting for the appointment to start (me in my office and Rod in his across town) I said, “No matter what the news is, we’ll deal with it together”. We weren’t exactly nervous, but I was definitely holding my breath when his Oncologist gave us the report. He started with, “Good news from the PET scan!” –  there’s no additional growth and the tumours that are present (liver and pancreas) are showing a decreased level of activity.

I cried happy tears with a big smile. I have never had so many episodes of crying over good news until this year! Rod will continue his current treatment and next PET scan is 6 months away. What relief. We were so excited.

Sparks and Socialising

Not long after Rod’s PET scan, the three of us headed back to Melbourne for a concert by a band called Sparks (I have negatively mentioned them in our travel blog). They are one of Rod and Hamish’s favourite bands and they’ve not toured in Australia for 21 years. When I saw the show announced, I knew we just had to go.

For the record, I am not a fan of Sparks. I don’t know what it is, maybe they’re too edgy for me, but there was no way I was going to miss out on Rod and Hamish seeing them. This is kinda like me going to the cat café with them in Phuket: don’t want to go, but don’t want to miss seeing them have a great time.

I downloaded the set list on Spotify and crammed those (often awful) songs all week. Did I mention the band consists of two men: Ron aged 78 and his younger brother Russel, aged 75? We dressed up for the concert, of course, in striped shirts and jackets; Rod grew a moustache. It was fun. The concert was at the Palais in St Kilda and man those old guys know how to put on a show. It was fab (except a few awful songs). Russel running about the stage, singing without a break, Ron on the keys, the crowd singing all the lyrics. By the end of the concert, my voice was croaky from singing and all the woo hoo’s I yelled.

I would 100% go and see them again. Am I a fan? No. But some of their songs may have made it onto my 2023 playlist.

The day after the Sparks concert, Jess caught the train to Wangaratta to go with us to Abraham and Kristy’s engagement party. We were all very happy to see Jess and catch up with the family at the party. It was a quick visit, but nice to have both children under the roof at the same time. The following weekend we caught up again at a lovely winery in Moonambel for Vivian’s 21^st.

Bikes

Once my sutures were out and I was convinced my wound wasn’t going to dehisce, I got back on the bike. My fitness has definitely taken a hit of late, but I’m being kind to myself and just getting out there and enjoying the ride, the cows, the ducks, the weather, the tunes…

A burst of enthusiasm has seen two of my friends (Jacqui and Michelle) and I sign up for a cycling trip to New Zealand in March to raise money and awareness for a not-for-profit organisation called Melanoma Patients of Australia (MPA). We will join another 5 people from Australia and cycle the Otago rail trail over 5 days. We pay for our flights and the cycling package, so the money we’re raising goes directly to MPA. Jacqui has also been impacted by melanoma, so this fundraiser resonates closely with us and our families. Whilst we are fortunate to have a bunch of strong supportive people on our side, not everyone has this.

MPA was developed in 2006 by two people who were diagnosed with melanoma. After their diagnosis, they discovered a gap in dedicated support for melanoma patients. These are the types of things MPA provides:

• National Melanoma Support Line
• Melanoma Telehealth Nurse Service
• In person and national support groups
• Peer mentoring program
• Information and education forums
• Facebook groups

Our fundraising goal is $3000 each. These are our planned fundraising activities:

• Bike and bike kit raffle
• Bunnings BBQ
• Silly Socks fundraiser (trust me when I say this is ALL I’ve talked about this week – we’ve sold 117 pair in 5 days!)
• Online fundraising portal  

I am going to drop the link in to my fundraising page below. Do not feel obliged to donate – but of course, if you can spare $10 that would be greatly appreciated. Here are some ways our fundraising is distributed:

$25 provides a patient with a high quality, evidence-based information pack about their cancer

$50 can fund a call to our National Melanoma Support Line

$100 helps to operate online support groups which provide vital peer to peer support across Australia

$1000 helps cover the cost of training and supporting a group facilitator

https://melanoma-patients-australia-nz-cycle-challenge.raisely.com/t/torque-is-cheep

Thankyou

Again, thankyou so much for your kindness and support. I love it and appreciate you for taking time out of your day to message me, or stop me in the corridors at work or Coles, not to just check in with me, but also enquire about Jess, Hamish and Rod.

Much love,

Bel