Last but not least

 Happy New Year/Burns Night/Australia/Waitangi Day from the bush babes.

 

It has been several weeks since my last blog. Apart from all the medical woes, we have been exploring and socialising:

 

A quick whizz back to NZ for Christmas (under the radar of the medics) 

 

A fun New Year, with dinner at home with Bev, Simon and Rachel (squeezed onto our balcony) 

 

Fireworks at 9pm from Lavender st and then again from Rachel’s roof top terrace at midnight. 

 

Golfing at Killara, 

Northbridge, Long Reef

The Vintage and Cypress Lakes (spot Sarah - this time on top of a bunker)

 

 

Needless to say Sarah has beaten me 4 times out of 5 and always looks very pleased about it.

We still love finding Kangaroos on the course, completely oblivious to golfers: free drop nearest point of relief 

 

Rock scrambling on coastal walks 

After Sarah fed me a breakfast of Pineapple and ginger cake with coffee and steroids, 

I managed to walk for 20km+. and she wondered why she was tired!

Sculpture in gardens

 

Exploring bush walks on the Great North walk by Hawksberry River. 

 

Picnics by the harbour. This one with a Kiwi friend: Beverley James 

A special birthday lunch with our friend Camilla at an iconic pub in Killara. 

This Bridge team is coming to NZ soon.

 Ferry time – outside al fresco and inside with masks

 

Barangaroo jaunt with a history lesson

 

Culture at the Opera house with a pre theatre drink and nibbles followed by a light show

 

Cycling in the Hunter Valley on a wine tasting tour 

 

Australia Day holiday on 26 January is a bit of a political hot potato as it is supposed to coincide with and celebrate the first invasion of the white man. Sooner or later the day will change and the celebration of Australia will change its focus. Not before time. Australia is a multicultural, diverse and vibrant country with lots of other things it could celebrate. We still had an enjoyable family picnic with the extended Curran family and watched the fly past and Ferrython from Cremorne Point

And so to the Myeloma part…

 

Good news is that I have achieved full remission (defined as paraproteins detectable but not measurable/less than 1) after the 2^nd Stem Cell transplant. 

 

My blood levels are on the way back to normal but are not quite there yet. 

Many thanks to The Birdies team for their 72 holes of golf for The Cancer Society Otago on 12 January. I joined in spirit from Sydney. They raised over $11k. Well done team.

My hair is growing back slowly; salt and pepper: soft as a baby black, with patches of bristly grey. 

 

I’ve got 2 more cycles of DVd (Daratumumab, chemo and steroids) to go and I started on the penultimate cycle Friday 27 January.

 

After that it is jabs of 15mg of Daratumumab once per month starting in April and continuing indefinitely (until the myeloma/cancer returns) 

 

Art from Winmark gallery in Broke.

Meanwhile there are lots of side effects to manage:

• Neuropathy – bad in both feet and mild in fingertips; now permanent.
• Weakened immune system so I will get everything and any bug/germ/virus going; recently we both developed a chesty cough and cold (not shifting even after 5 days of antibiotics).Fortunately it is on the mend, but the coughing was so violent at times we both threw up;
• Liver and red blood cells hit badly affecting ability to breathe going up hills but gradually getting better; I've now got a Ventalin inhaler to help;
• Inability to eat oysters/other shellfish/raw fish or meat/ no mould grown cheeses (whilst on Daratumumab) 

 

A small price to pay for more life.

Sarah bought me a facial scrub; not sure it extends life but it feels refreshing. 

I like messing around. You have to have at least one belly laugh a day.

Medical appointments in 2023, will be slotted in around life, rather life around hospital visits. Fortunately I have the best Haematologist (a Kiwi called Professor Judith Trotman) She understands the importance of maximising time in remission between treatments and the difficulty of travel. She is allowing me to take a 6 week and a 10 week break from treatment to travel to NZ and to UK. Yay!

We are now happily planning the rest of the year subject to staying well and fit. I get live vaccines again in April and may then develop some immunity to Flu, Covid and Shingles. I can’t have MMR for another 18 months, so if you or a family member have got any of these, please don’t share.

 

This is my last blog for round 2 of myeloma. I will finish off with the rest of the Sydney summer flower collection. 

Thanks for reading and take good care of yourselves. Hope to see you somewhere soon in 2023.

 

Love

Jo

Xx

 

Postscript Round 3

My friend Fern once told me that all drugs for myeloma are like putting your shoulder to the door; the cancer is always pushing against it, growing, relentless. When monthly growth jumps to 5mg per month and rises to approx. 25mg per litre, it will be time to start on a next regime of heavy drugs. I am expected to be in remission between 2- 4 years starting from Day 0 on 20 October 2022. Let us hope it is more like 4 years than 2. 

 

Until the next time…