Halfway. End of cycle 2

It will come as no surprise that since Sarah arrived in Sydney, we have been out and about adventuring. Whilst this has improved my step count and helped the chemo go round, I am also more exhausted as the drugs take effect and the brain fog begins.

It has been a busy time.

I’ve been selling some of the furniture that came with the apartment on Gumtree. Replacing kitchen gear loaned to us; buying things we like; experimenting with different recipes. As proud godmothers, we watched Nick, a fine young man with a mop of hair to die for, run in an end of season race. Although Sarah was itching to run too, a puppy was provided to distract her. Thank you Carolyn and Mark.

Our standard route into the city is a walk over the Harbour bridge.

Exploring the arts we checked out the Archibald exhibition; our favourite was a gruelling self-portrait by a Mostafa Azimitabar, a refugee held on Manus island painting only with a toothbrush and coffee. He looks like an IT guy I used to work with.

Last time we lived in Sydney was in 2010 when we worked full time. Now we have more time for leisurely strolls, we decided to re visit some of our favourite short harbour and coastal walks.

Always a winner on a fine day is the Bondi to Coogee Coastal walk.

Short enough at 6km for me to cope with. Fresh air, loads of sun sea and sand. Waveton cemetary still dominating the coast line with the odd Scottish piper to entertain us.

Bus at each end to whisk you back to civilisation.

Breakfast in Manly followed by the Manly to Spit bridge walk (via a few park benches)

at High tide - 10km around the harbour north shore. Now and again I get to rest or paddle up to my thighs.

Spit bridge to Balmoral rock scramble 4km.

This time we checked out low tide, met Jessica and timed the walk perfectly.

This is a favourite rock scramble for us all as it always involves some contortion or other to avoid wet feet. Sarah managed a quick dip at Balmoral beach but vowed to bring a wet suit next visit.

Milsons Point to Greenwich Wharf – harbour walk (14km)

A challenge from Sarah to keep walking just a bit further. Starting under the Harbour bridge, we wound our way around suburbs and foreshore parks we had never had time to visit before.

Meanwhile, my Concord hospital visits (place looks like a prison from afar)

have been cut down to one per week as I have graduated to self-injecting Bortezomib at home on Thursdays.

I have volunteered for any trial going. This one is to allow patients more time at home and less in hospital. I’m up for that. Now every Monday I collect a chemo take away. I still need escorting home in case I go to sleep or get lost. I am so dozy and out of it. It gradually wears off, but I still find myself doing daft things or not quite sure of what I am doing or why. The injection on Monday is 15mg and with a large syringe and takes 5minutes to go in.

The injection at home is 5mg and takes 10-20 seconds. My stomach is heavily bruised, swollen and sore from all the “subcut” jabs in it. My skin is very sensitive and I get red rashes, peeling and itching from any slight abrasion. Everything now tastes like metal unless it is salty, spicy or sweet. I’m getting bigger and more puffy having added 3kg in 6 weeks. Not sure how as I am not eating any more volume. Must be sugar and slowing metabolism. Medics are not concerned as they say I need to have extra in reserve for what is to come. Sounds omnious.

Other bad news is that 2 chromosomal structural abnormalites have been detected in my myeloma from cytogenetic tests. Loss of both -1p and -T53 both have an adverse impact on clinical outcome (this is measured in both Overall Survival rate and Progression Free Survival) Judith, my Haematologist called it 2 black marks and reason to progress to the next stem cell transplant asap. I’ve researched it and don’t understand 10% of the research papers I’ve found on the net, apart from the consensus that this is not good news. There is nothing about how to target or fix it. Got a bit depressed but the decided there is no point worrying about something I can’t change and I don’t understand. Whatever happens will happen. I just have to get on with enjoying the bits I can change.

Good news is that my stem cells not used in my first treatment (I grew enough for 2 transplants when I was 52) arrived safely from Christchurch and are now stored in RPA Sydney awaiting the second transplant in mid October. It worked well enough first time round. I can only hope that my myeloma is killed off enough this time to give me a few more good years yet. I’m halfway through the first round. Cycle 3 starts on Monday 29 August. Cycle 4 on 19 September. Loads more jabs to look forward to.

Finally back to the fun stuff.

A 4 day trip up to North NSW to Yamba Beach, Yuraygir National Park, Bonville GC, Coffs Harbout and Sawtell.

Yamba Beach is quite remote but lovely in winter. We stayed in the Surf Hotel and found an authentic Italian restaurant on the Hill for dinner.

Lots of surf

Sarah had to run to stay dry

What could be better. A coastal walk in the Yuraygir NP took in Maree Beach

to Shelley Headland return (8km). In distance in photo below

It is one of the most remote campsites and also accessible only at low tide. We were lucky to get the tides right – without checking!

The highlight of the trip was a round at Bonville Golf course.

This is a picture postcard perfect course. Hazards everywhere, tricky slopes, difficult to play but simply stunning.

The round was very slow due to many guests on the course, but it was quiet, peaceful and well worth the trip.

The clubhouse and accommodation was clean but has seen better days.

Sarah played out of her skin on the second 9 and beat me (again).

Final day was spent in Coffs Harbour & Sawtell with our friend Camilla and Maxi.

More beach walks, good food and relaxing. I’m writing this on a day off exercise. I needed a rest. Sarah has gone out for a spin on her bike. We found some gorgeous flowers on our beach walks. I will end this with a selection of them.