Day 67: Edinburgh filigree petals

Day 67 and I've been dragging myself about. I now understand that the same pattern continues for me with this new drug as for the last: days 3,4,5 post-infusion are the rough ones. Bone tiredness, aching joints, dry mouth, cardboard taste all come as part of the package.

My walk home across
the meadows, Edinburgh

I had a happy start to the day, with a early morning Skype with Fiona in Edinburgh. Our schedules, and now daylight savings changes in the UK, makes finding a mutually convenient time to talk difficult. I knew Angus and James would be heading out very early this morning, so Fiona and I scheduled had a 7.30am chat. It was lovely to catch up on Fiona's news and to start planning her visit down under in 2018.

After speaking with Fiona I always feel nostalgic for Edinburgh; we're keen to get back there as soon as this is all over.

Fiona and Georgie's Edinburgh apartment building

What followed my conversation with Fiona wasn't so lovely - an hour in a dental chair filling and repairing the tooth that I broke yesterday. I am so fortunate to have a wonderful dentist just around the corner who is always so obliging, and I do feel incredibly grateful to have the problem seen to so fast, but already feeling under assault, it wasn't much fun.

After walking the block home from the dentist, I felt like I could sleep for the rest of the day but I kept going - with Robbie driving me over to see the lymphedema physio at Randwick hospital. This trip is always worth it, shifting the build up of fluid relieves pressure and the massage itself is very relaxing.

Back home for lunch and a fleeting visit from Rob's dear sister Kerrie, on her way for a birthday celebration with her lovely husband Mark. Happy birthday Mark! I've not seen her since the treatment started and it was lovely to catch up. She bought me some excellent skin care products which will be especially valuable once the radiotherapy starts in early June.

My early morning connection with Fiona in Scotland linked me to todays earrings. I bought these in a wonderful jewellery shop on a road winding down to the Grassmarket in old Edinburgh. They are silver and blue filigree petals on hook, worn as a hoop. I find these earrings so pretty but they can be annoying to wear - the hook often catching and freezing the earring in mid swing - with a little re-engineering they will be just right.

We're settling in for a quiet night tonight. Angus is off for a sleep over with his friend Cohen; James is managing back stage at the school musical for another night, leaving Robbie and I home alone. Normally, we'd pop the champagne and go out for a nice dinner.
Instead, I'll get on with the new puzzle - whoo hoo!

Day 66: Lili's pink pearl clusters

Day 66, clickety click. I'm working my way through the seemingly endless days of treatment.

I'm still feeling very delicate today and a bit achey all over. The steroids made it another rough night - the steamy weather didn't help - especially now it seems all the joys of the hot flushes are starting to arrive. As a result am taking it easy with a day mostly lazing in bed or on the couch. I'm pleased for the cooler weather, but am sorry for all those suffering from the relentless rain.


I am feeling so very grateful that I have Robbie around running the house and protecting me, family and friends sending me loving messages, and colleagues patiently waiting for me to finish what I promised I would. I really can't imagine how people without such constant support manage, especially when there are children who need to be fed, clothed and taken to and from all their activities. I'd be on my knees.

Meg and daughter Mary

Lisa and me, MONA, Hobart 2012

Two special people in the golden web celebrate their birthdays today, my dear friend Lisa in Adelaide (Day 10& 47) and my Aunt Meg (Day 52), and I'm sending the happiest birthday wishes to them both. According to their zodiac sign, these two Aries women are "frank, enthusiastic, fierce, bit hotheaded and loyal to their friends". As a grounded Capricorn, I don't believe in the all that zodiac nonsense, but I must say, this isn't too far off for these two, especially the loyalty part!

As I've mentioned in earlier posts, Lisa is, like me, a jewellery obsessive and she has sent me many lovely pieces over the years. Today, to mark the day I'm wearing a selection of it; delicate pink seed pearl earrings, a classic black pearl necklace and a bangle with a triple teardrop cluster of gem stones. I've also sprayed on my favourite Jo Malone 'Lime, Basil and Mandarin' perfume she thoughtfully bought me as a gift when she was coming back from overseas. This collection cheers me up no end, and remind me of our longstanding and special friendship.

Chappell, Chesterman, Hill book launch by Susan Ryan 2009

My relaxing afternoon was disrupted with a "crunch" - a broken tooth thanks to a ginger nut biscuit with my afternoon cup of tea! Teeth weaken with chemo; just another side effect to deal with. Off to see Dr Dave the dentist tomorrow.

Day 65: Satellite 5

Satellite 5 friends

Day 65 and I am feeling fragile, so I reached for a pair of trusty, comfortable, old friends. These are one of my first purchases from Satelitte from about 8 years ago - a silver mandala on a hook. They are light and comfortable to wear, and thus I often take them travelling with me as I can leave them in and forget about them.

Harts Peak, Tassie w Cazy,  2015

Satellite 4 in Dubbo

I found these shots of me doing just that when I was 'off road' in recent years - colouring in while camping (gulp!) outside of Dubbo after a visit to Western Plains Zoo, and during a bushwalk (double gulp!) with my boys and Cazy and Ben et al up beautiful Hart's Peak in Southern Tasmania during the 2014-15 Christmas holidays.

And w/ James

I'm feeling wiped out today, both because of yesterday's treatment and because of the nasty steroids which kept me up til very late, then with little ability to sleep. Hence, again I've largely lost to ability to speak and am tippy toeing around quietly. At least this time the nausea is hugely reduced and I no longer have to tolerate the sickly sweet smell of the epirubicen as it exudes from my pores.

This afternoon I sat with the puzzle for awhile, determined to get it finished. A last minute panic ensued when I couldn't find the final piece; it was soon discovered matted in Molly hair down the back of the couch - Phew! Now I can hand it over to Deb for her enjoyment. It was such a pleasure to work on this lovely image and again I was left feeling panicky to have it done, so I summoned what energy I had and with Robbie scurried up to Newtown to purchase my next jigsaw challenge - a classic Renoir. I'm itching to get into to it tomorrow. A lovely evening walk with Rob, Gus and Molly dog once the heat dissipated ended a quiet day.

Day 64: Mum's 40th jet set

This is one of my favourite photos with Mum. It's taken in May 1987, the night of Dad's by-election win. This was the start of his 12 year NSW parliamentary career as the National Party Member for the Northern Tablelands, including a period as a Minister in the Fahey Coalition Government. It was an exciting moment for he and Mum after a tough preselection battle and a challenging campaign, running against the well-loved widow, Thelma McCarthy, of the former well-loved local Member Bill, who died in office.  I think Dad managed the campaign well, showing great respect for Thelma, though he felt the full force of the ALP machine then and in later elections - including from the dreaded Eddie Obeid who was usually lurking behind the scenes. 

Behind every great man...there is a great team of women

We celebrated Dad's first election win at a 'gala' event the Armidale RSL (they were much lower key events after that). Many of Dad's siblings were there, his brothers Alan and Kevin being key members of his campaign team, and all Mum's family descended on town to support him and pass out how to vote cards - that's loyalty for you! As a first year uni student with very different political persuasions to Dad I was laying low. The cost of studying in one's home town meant I couldn't be entirely anonymous, with lecturers embarrassingly and inappropriately berating me about Coalition policies in tutorials -  I told them to shove it. 

Nanna loving the spotlight

Nanna Clare is the one that looks like the winner that night. Boy was she working that blue eyeshadow!

Needing extra courage on day 64 as I headed off for the fourth infusion, I chose to wear the jet earrings and heart and jet beads Mum wore that night - some classic '80's bling. We kids bought these for Mum for her 40th birthday in 1983, which means she was only 44 when these photos were taken. They were purchased from the fanciest shop in Armidale at the time, Mann's Boutique, run by Kerrie Mann who managed to bring a bit of Parisian chic to town, with the biggest range of french perfumes, scarves, handbags and jewellery. I think Suzie was her best customer. Rob bought me my first bottle of YSL Rive Gauche from there (a standard for all his girlfriends, he tells me now!); I reciprocated spending all my hard earned wages on him, with a bottle of Paco Rabanne aftershave and an Oroton wallet.

I had to work had to suppress lots of emotions this morning as I prepared for this infusion. I was very conscious of having to adjust to yet another new thing in this regime, a different drug with very different side effects. I was tired too because in preparation I'm needing to take many more steroids which are interfering with my sleep.  It's common to have an immediate allergic reaction to docetaxel including chest tightening, rashes and flushes. It was hard not to get stressed when my lovely nurse today - Louise, who also grew up in Armidale - when preparing the infusion called for someone to bring some additional hydrocortisone to be administered immediately should any of these side effects occur. Thankfully my body coped with the latest cocktail without any obvious reaction. Over the next three weeks, I should expect to be less nauseous, but more tired, with joint aches and pains, and to develop attractive puffy ankles.

The infusion was much shorter today as I had 1 rather than 3 bags of chemicals run through the port, which is thankfully still working a treat. The process took a little over an hour and for the entire time I needed to keep my hands under ice packs in an effort to stop the circulation to my nails and avoid the nail damage with comes with this particular treatment. It was uncomfortable and a bit painful and most frustratingly meant I couldn't read my New Yorker on the ipad; Robbie kept me preoccupied with the crossword, which we got out all bar one clue. I'm not sure if it was the jewellery or adjusting to the new regime, but I was missing Mum terribly today, and found it hard to keep those emotions at bay. Lovely messages from Eilee, Suzie, Cazy, Lindy and Meg at the very time of the infusion made her feel very close. 

For some bizarre reason - perhaps driven by the anaemia - I started craving a hamburger half way the treatment, so as soon as it was over Robbie and I headed to a local Darlo burger joint. As is always the case with these things, the idea is always better the reality; even thought I ate less than half of it, I've regretted my decision all afternoon!

Now for a evening stroll to the park, and a very quiet evening with my boys and the puzzle. I've been engrossed in it and making good progress, but monochrome outer edges are going to slow me down now.

Day 63: Paulie and Geeta's silver orbs

Wearing my silver orbs at P&G's with gorgeous nephews
big and small, Harry and Jai 2016

Geeta and Paulie Malaysia wedding 2008

Today I'm wearing a simple but lovely pair of silver orbs that my sweet brother Paulie and sister-in-law Geeta gave me for a birthday gift about two years ago. I chose them today because I knew I'd be seeing Paulie. He's such a sweetheart, he's been cooking for us, and hand delivered 6 meals this afternoon. What a boy! We're set for the week and Robbie can take a break. As I keep saying, its so wonderful to have him and Geets and Jai in town to have these spontaneous get togethers whenever we want.

Paul and Mum, train to Atherton Tablelands, 1975

I love my little 'bro - he's such a champ for surviving an upbringing with four older sisters. He put up with us - me in particular - babying him for years; between the ages of about two and four I cast him in mine and Lindy's imaginary games as my toddler, attempting to feed him grass, mud pies and other delights. I christened him 'baby jim' - a nick name I still often use in my head, if not out loud. He was such a cute little boy, it was impossible not to have him in our made up worlds.

Paulie looking overwhelmed with his female gang, North QLD 1975

This is my favourite ever photo of Paul - it sums up the sort of time we had at Nanna Clare's place as kids. These days, photos like this would have children's services knocking at your door but for us it was (fairly) harmless fun, even it did make some of our friends blanche. The flock wallpaper, his the Hawaiian shorts and the West Indies Cricket T-shirt with Viv Richards and the whole gang screams 1979!









Paulie seemed to thrive in the female environment and has some wonderful traits: gentleness, empathy and care and cooking. After having his first poem published in the Armidale Express when in primary school, Paul has emerged as a very talented creative writer. For the last decade he's been working in the radio and advertising industries in Melbourne. Now he's moved to Sydney - after Geeta took on an a great job with Booktopia - and is happily running his own business working on some amazing projects. Recently he's developed an incredible campaign with indigenous communities in the Northern Territory  to prevent road deaths, and with his long term mate Josh he's working with Qantas, including its last two inspired inflight safey videos.

This morning on Day 63 I headed back to Cancerworld at the Kinghorn for blood tests and a consultation with Rachel, my oncologist. She confirmed that my blood results were quite good; I'm a bit anaemic, vulnerable to viruses and my liver is taking a hit, but as far as thing go I'm travelling pretty well. She explained the potential side effects of the drug used in the next three infusions, docetaxel - the possibility of an immediate allergic reaction, less nausea but nerve sensation and possible damage, more hair loss (hang in there eyebrow/lashes), nail damage, mouth ulcers (go coconut oil, go), aching joints, tiredness, fluid retention, swollen ankles...what a joy this treatment is. I'm working hard on strengthening my 'living in the here and now' muscle.

50th anniversary celebrations, Feb 2014

For a welcome tonic after hearing about the next round of treatment, Rob and I headed for coffee with our family friend Fr Aloysious Mowe, currently director of the Australian Branch of the Jesuit Refugee Service, soon to be based in Rome in the same organisation but in a major international co-ordinating role. Aloysious became part of the golden web through Dad, who worked in a volunteer capacity with the JRS when living in Sydney. Dad and Aloysius formed a tight bond, which quickly extended to Mum. At a happy occasion during the last year of her life, Aloysious witnessed Mum and Dad renewing their vows at their 50th wedding anniversary. He also ministered to Mum in her last days in the most generous and gentle ways. I was with Mum one evening when Aloysious came to see her in hospital when she was in great distress, which gave way to a great sense of peace by the time he left. It was truly one of the most transformative encounters I've ever witnessed.

Aloysious also kindly agreed to come to Armidale to officiate at Mum's funeral, much to the chargrin of the local parish priest. It was a joyous celebration of her life, due in part to the sincerity and thoughtfulness with which Aloysious conducted the service (and also in part to Mum's forward planning, which was so spot on). After the funeral, George Souris, a former NSW Minster who was friend of Dad's and Rob's boss for a time, wrote to say it was one of the most beautiful funerals he'd ever attended, in his words "one fit for a Queen". He was right. When Dad was at his lowest point after Mum died, Aloysious took him on a trip to Hobart and reminded him of the life he still has to live.

He visited me too in hospital one evening recently when Ree and Andy were there and we had a great conversation about Judaism, Christianity and the meaning of life. After some quiet time on our own, he also left me feeling peaceful and calm.

Happily for all of us, Aloysious was also able to conduct the marriage service for Dad and Margie last November. His homily was a work of art; in it he was able to honour Mum and Margie's husband Norm, who died a decade a go, while also celebrating the commitment and future of the newly weds. It bought everyone such great joy and comfort.




We're all sad to see Aloysious leave Australia, but it's a great move for him. He's already taking bookings from the Chappell clan for future trips to Rome, starting with Cazy and Ben in July and Dad and Margie later in the year. 

Today, he passed on to fellow tea cup collector Rob two of his favourite cups that he can't carry with him to his new abode. You can see from Rob's face just how much he loves his new pieces. They spent half an hour comparing notes on their fine china purchases, where, when, who...it sounded familar! I came home to a parcel on my front verandah - gorgeous Art Nouveau colour-in plates sent from Catherine and Bart from Belgium. The second puzzle is almost done, and I can't wait to turn to the crocheting and colouring in these beautiful images. One of the good things about this treatment is not to be driven by work objectives, but these relaxing and stress free pursuit.

Day 62: Florence Pearls

EUI Law School

James and Angus in EUI gardens

One of the absolute best things about my job has been the opportunities it has given me, and us as a family, to travel. In 2011 we had a double adventure - after spending a month at Manchester University with lovely friends and colleagues Claire Annesley and Georgina Waylen, we moved on to Florence where I had a fellowship in the Law School at the European University Institute in Fiesole, in the hills behind Florence. The EUI is housed in a magnificent series of buildings, mostly old monasteries, and is a unique and prestigious institution, teaching only post graduate students and attracting high-flyer staff. Most are on a 5 year contract - though they all try to game the system and stay on for as long as they can. For all the hype, I found the EUI a rather strange place; it seemed to me there was too much emphasis on patronage and far too many over inflated egos.  I did get lots of work done, organised an interesting workshop, and enjoyed the daily sit-down three course lunch (!), but the most fun and memorable things about that trip were things that happened away from work.

Rob and I EUI gardens, after a month of a pasta diet

Views in both direction from our apartment, Florence

M&D and me waiting for the bus

We deliberately rented a large apartment - which was in the centre of Florence right on the Arno river - as we'd hoped and expected to have lots of visitors, which we did. I've already written about Kerrie and Betty's visit (Day 31). Mum and Dad also came, as did Catherine and Bart (Day 50) and Fiona and Georgie (Day 39). We loved seeing them all and exploring that wonderful city and surrounds in great company. We only worked out on our own on the last night in town that at the back and under our apartment was the best pizza restaurant we'd eaten in during our entire time in Italy - we felt so silly!

Georgie and Boys, Ponte Vecchio

Fiona, Georgie and Gus outside the Baptistry

The ice cream eaters at Firenze Duomo

Today I'm wearing the earrings Robbie and the boys bought me to mark our time in Florence - they are a wonderful set of pearls that they found at a tiny jewellery workshop in the backstreets of Florence. When ever I wear them they remind me of these precious days.

On Day 62 Sydney has turned on a perfect sunny day after almost a month of rain. After a relaxing morning we headed out for a family walk around Blackwattle Bay.  We've had a tradition for a number of years of a Sunday family walk, and it's starting to get more challenging to get a certain teenage boy out the door...we managed today, but he set his own pace, with headphones in...I'm learning to be grateful for the smallest things! 

I'm made the most of a quiet day before the onslaught of round 4 which starts tomorrow with blood tests and doctors visits. I'm feeling OK about it, though I admit to some nervousness about how I'll react to this new drug - docetaxel - which I'll be on for the next three rounds. I'm in a 'let's do it and get it over and done with' frame of mind, which probably isn't a bad place to be.

Day 61: Red glass beads

I enjoyed wearing Soph's red sparkles so much yesterday I thought today I'd go for one of the other few red pairs I have in my collection. Mum bought me these earrings many years ago. They were made by a local Armidale jeweller, and Mum purchased at the Armidale markets for me 'just because'. This was while I was still doing my undergrad degree, so it means they've been travelling with me since at least 1988. The blood red glass beads sit on a long silver hook; they are very simple, but that's their charm.

Margie and Mum

The Bugden Clan sans David, 2014

As I've been wearing these today I've been thinking of Mum and the important people in her life. I've already featured two of her precious sisters, Eilee and Suzie, and today its the turn of Mum's second sister, Margie. Mum and Margie were very close, and I know like us, Margie misses her terribly. Based between Brisbane and the Sunshine Coast, Margie lives an increasingly busy life with the arrival of 8 gorgeous grandchildren in quick succession over the past decade or so from her three lovely children, my cousins, David, Karen, and Anthony. The latest precious edition - Aurelia - was born to Anthony and Lani in January.

The Napier Girls at Dad's wedding, 2016

Before moving to QLD, Margie and Gary lived in Sydney. When we were kids, to get some respite, Mum used to pack us three 'big ones' off to them for the school holidays on the 'red rattler' train from Armidale. Poor Margie and Gary having three fractious girls land on their doorstep for weeks at a time!  They were living in Sylvania then, and had a swimming pool and spa - the height of luxury for kids from the country; we'd spend our days in the pool emerging with skin as wrinkled as prunes at the end of the day. They also generously hosted me and my best friend Maddie when we did our Year 10 work experience in Sydney - me at ABC TV when it was still at Gore Hill, with dreams of being a journo, and Maddie at a fashion industry magazine, The Rag Trader in Surry Hills, with her sights set on the fashion industry...as things go, we're not too far off.

When I first moved to Sydney in 1991 and Margie and Gary were still living here, they generously provided me with the lounge and dining room furniture I couldn't afford but desperately needed. Over the past few months, Margie's kindness has  been on display, with her sending me many encouraging messages of love and support.

I love these pictures of us at Margie's wedding, where she looked so pretty and happy even though it occurred very shortly after her beloved Dad, Harry, had died suddenly. I'm pretty confident it was early 1972. Despite our matching dresses, we three girls weren't flower girls - though obviously Linda is keen to act the part with the bouquet she's snagged from somewhere! I'm not sure what's making me so sad or grumpy (?) in the b&w photo, but in the colour shot I'm obviously very happy to be standing with Suzie, looking so pretty in lilac. Cazy is tucked in there under Mum's pink 'slack suit' top, with her birth a few months off. I think I still have Mum's sandals in my dress up box.

Day 61 has been very relaxing. A morning walk, an hour or two on the puzzle, and the blog has kept me occupied. With James out at rehearsals for his back stage duties for the school musical next week and Rob and Angus off to see the Swannies kick off for the season - thanks to Steph for the tix - it was a quiet afternoon.  Shame the Swans lost, but it's early days. The boys came home with my new cap, with a special message from Dane Rampe, which Steph organised for me. Love it! Cheer cheer!