Annette’s life through pictures. “Dream” by Priscilla Ahn was a song Annette chose because it summed up her journey. From her childhood dreams, her hopes her challenges and what was realised. This is the first part of a montage presented at her funeral.
It has been so hard and it still seems surreal. This process this journey has been so long, but she has always come back to us. even now after her funeral I expect her to walk into the room. the emotion sweeps over me in waves. One minute I’ll be fine and the next ill be aware of the reality and become a sobbing mess. It feels good to cry.
“My darling Annette, since we first met I knew that we would be connected forever. Our journey took us many places and down many roads. Many paths were happy, full of great memories and joy. Some ways were dark and unsure but we overcame with love and faith not fear. Wherever we went we were surrounded by love. My heart is aching, I will celebrate you every day. Thank you for your wonderful love, your radiant smile and your infectious laugh. Thank you for the many amazing years we shared growing together. Thank you for our precious children who remind me of you every day. You fought hard and long and touched so many others along the way, now you can rest peacefully. Now we must take different paths on our journey but I feel comforted knowing that we will meet up again one day. Until then watch over us from afar. We will miss you. With all my love, your adoring husband. Ben”
Some recent photos, show how amazing Annette’s resilience is.
Annette has wanted to add to this blog for some time however changes in her condition meant her focus was on finalising other things. About two months ago she returned from Perth where she underwent some radio wave treatment. Due to swelling in her scar tissue from her mastectomy, the treatment was incredibly painful and unbearable. Even so, she completed five days of treatment. She had the weekend to recover but developed ulcers due to the intensity of the heat treatment. She rang me on the Sunday of the first week , knowing she had 2 more weeks to go, to tell me of her situation and I asked her to to just come home and spend time with us. I think she was relieved to hear me say it. She needed to hear me say it and booked a flight home that night. She was exhausted and in constant pain with no energy. When home for a few days she booked to have some vitamin, immune boosting injections as she had done many times before. This would usually give her the energy she needed to carry out daily tasks and repel any signs of fatigue. This time however, her body found it hard having such a dose and she was soon admitted to St. Andrews to recover and have further scans.
We soon received the news that changed the game. Annette’s lungs had been engulfed by the cancer, she had 15 tumours in her brain and clusters of tumours in her abdomen and back. She had come to the realisation that it was time to surrender. Even though she was surrendering she maintained she wasn’t giving up. She was going to live the remainder of her life on her terms, not forced in to another round of chemo…She always said “I’d like to go with a smile on my face and hair on my head” this was very important to her. Another round of chemo would have sapped her of all energy, caused her hair to fall out and made her sick and nauseous. Annette resisted the doctor’s calls for more chemotherapy and came home to be with us. Over the next few weeks she became weaker and more reliant on others to feed, dress and wash her, but she spent that time waking up with us, greeting us when we came home, and being..with us. During this time there was amazing energy in our house. Parents of students in my class made meals for us, the teachers organised lunches for the kids a school. Our dear friends and family came to help organise cupboards, clean, wash, chat and reminisce with Annette. It was a form of therapy for all involved, especially Annette. We were overwhelmed by support.
Annette’s Health continued to deteriorate and she was now on oxygen 24/7. She sat in bed most of the day and we wheel chaired her around the house to where she needed to go. It was a month ago since her birthday and she always liked to celebrate her birthday. We held a picnic in the park for friends and family to come and wish her Happy Birthday. The turn out as usual was spectacular. There were over 200 people there and after an initial scare of lightheadedness she caught her breath and proceeded to talk all afternoon. She was on a high all night and the last one to go to sleep.
It was also school holidays so when Annette had recovered from her partying and was having some good days we seized the opportunity to go to Pt Hughes, where Annette had spent much of her childhood with cousins and friends. I was able to wheel her down to the beach and around to the playground. We watched the kids play, bought hot chips and listened to Annette tell stories of her memories at Pt Hughes, surrounded by greedy seagulls. I am so glad we could share this experience one more time and the kids seemed to really appreciate it.
Annette was admitted to the RAH two weeks ago after experiencing a tachycardia that saw her heart rate bounce between 140 and 170 beats per minute. The ambulance was called at 2:00am to monitor her but after 2 hours without allaying it was recommended she be admitted for further monitoring. It was another 3 hours before her heart regulated itself and we were later transferred to St. Andrews as Annette had wanted.
Over the past two weeks we have experienced an amazing range of emotions. As prepared as I thought I’d be there is nothing to compare to the pain and heartache that comes with facing this and telling our beautiful babies that the time has come to say goodbye to mummy. The kids spent some one on one time with Annette over the last week as she drifted in and out of sleep and although she was finding it harder to process conversations, they talked, laughed and played games as often as the could.
Big Buddha in Hong Kong. Mum and I walked up over 200 steps to the top with lots of breathing breaks in between.
Hong Kong streets
My friend Tricia sent me a photo of this statue before i started my journey in China 22 months ago. The statue says Brave Warrior Woman - everyday seeking truth. Nine months on and off in China and I have been looking for her in every park I went in. I finally found her two days before I came home.
I heard this saying “when men plan, God laughs.” I am finding that universe works in mysterious ways and God definitely has a sense of humour. Turn of events seem to always expose my unrealised expectations within myself. I wish at the time I could also laugh but it’s only upon reflection that I can look back on the things that don’t go according to plan and smile with understanding…
Return to China
Travelling with my 74 year old mother in China produced some funny moments. We spent two days in Hong Kong getting mums Visa. I have to admit I love the time I spend in Hong Kong. I am always in awe driving into Hong Kong Central from the airport with its amazing bridges joining islands and all the high rises lit up like Christmas. Mum was equally impressed. We purchased all our meat products in Hong Kong (Aussie Organic) packed it in ice and took the airport car to China. This I thought would be the easiest way to get to the Hospital with mum and our heavy luggage. Everything worked effortlessly as we sat back in the car and enjoyed the ride. I explained to mum (several times because she kept forgetting) that we were going to go through two custom points Hong Kong and China and be on our way to the hospital. It should take about 2hrs all up. We were in a car with four other Chinese business men. The car went through Hong Kong Customs, passports stamped not a problem, then 100m down the road was China check point and our passport stamp again and then a siren went off and our car was asked to drive to an inspection point. Crap! I explained to mum this hasn’t happened before and I have no idea why. Then I started thinking crap I have all that raw meat is that illegal? I’ve never been stopped before and really anything goes in China but I don’t know. Then I was thinking I have all that medication and I forgotten my doctor’s letter double crap!!!
We were asked to take all our bags out of the car and put them in the x-ray machine which we did. Mum said to me in our Italian dialect that she was busting to go to the toilet but was worried that they’d think she was trying to get rid of drugs or something. We started laughing.
Our bags went through the scanner and I was thinking how am I going to explain this to people who don’t speak a word of English? But the one person who did speak English said we could go. Thank goodness I breathed a sigh of relief. It seems they were more interested in the business men’s bags for the fake designer labels China’s well known for.
Mum couldn’t wait to go any longer so we asked where the toilet was. Now going to the toilet in China is a westerner’s nightmare. Let’s just say we lack the muscle tone in our legs to squat like the Chinese so mastering the drop hole toilet without disgracing yourself takes practice and interesting manoeuvring. We were led to a toilet that had no lighting and smelt like a urinal that hadn’t been cleaned in years. “Welcome to China. ”I said to mum as I laughed and handed her tissues because you quickly learn there is never any toilet paper. Mum did well considering it was dark and her arthritic knees. I waited trying not breath as I laughed at mum’s comments, and thinking this is not how I planned to ease mum into China.
We got back in the car and continued on the journey to China and I laughed all the way at mum’s colourful commentary of China driving. “Close your eyes mum, it’s better that you don’t see..”
Having my mum in China has been good. Mainly so she can see what I have been doing for 8 of the last 20 months so she doesn’t worry so much when I am here. I don’t think I have eaten this well in ages but if I had another bowl of legumes I was going to scream. As always she really took such good care of me especially when I was tired from treatment and from time to time we annoyed each other. All in all I am grateful to her and Dad as I would not be able to continue with this treatment without their support. It’s funny growing up I always wanted mums approval mainly because it was so hard to get but as I got older I realised the only approval I needed was my own. I think I surprised her though, that I knew my way around places and metro systems, that I could hold my own when I conversed with my doctors and most of all my fortitude. One of the first things she said to dad when he picked us up from the airport was “I really don’t know where this girl came from…” I smiled.
I picked up the Kids from school the afternoon I arrived back and they ran to me screaming “Mummy!!” I had to fight back tears. Overwhelmed and relieved I was home again. Three weeks away from Ben and my cherubs feels like an eternity.
As planned, the next day we left for Pt Hughes for the Easter break. Some of my best childhood memories were at the shack hanging out with my cousins. Now seeing life evolve and my children playing with their cousins brings a smile to my face. Fours day of eating, Easter egg hunts and talking. I was grateful that I was able to share this with Ben’s family also.
Treatment At Home
As I mentioned in my previous entries, I decided to alternate treatment in China with treatment at home so I could spend time with my family. I can have the same chemo here but not the SPDT treatment. Probably not an ideal treatment plan but I felt like this was the best way for balance between treatment and living which is the most important thing for me right now. The day after we returned from Pt Hughes I had chemo and two days later Anthony had to go to the Women’s and Children’s hospital with pneumonia. Normally this would be my role but for the first time I couldn’t go and Ben went instead. Another thing in my life that I had to hand over. I’m not going to lie, I hated it. I have trust issues with Hospitals and Doctors and I watch their every move like a lioness protecting her cub. But this is something that Ben needs to learn and sadly I needed to let go. Of course I still sent him with a list of instructions and waited by the phone. And of course Ben left the instructions at home but Ben managed perfectly. Lucy and James also caught whatever Anthony had and it was a busy few days. The next week I went in for another dose of Chemo and a new drug Zometa which is supposed to harden bones weakened by bone metastasis. I felt ok until the next day when I started to get the shakes and a raging fever. I called my oncologist and headed into hospital.
This was my 34th dose of Chemo in my life and my immune system doesn’t bounce back like it used to. My white cell count dropped dangerously low and I was neutropenic. A simple infection is potentially fatal to someone who has neutropenia. Normally in China if this happens or really before this happens, I am given a drug called GCSF. It works by kick starting your bone marrow by producing new white cells to fight infections but here in Australia this drug is only PBS funded for early stage cancer patients or if my condition worsens (ie near death). I spent 14 days in hospital on IV antibiotics until my neutrophils (type of white cells) hit 1.0. They plateaued at 0.1/ 0.2 for several days (normal range above 2.5).
The approach taken by Australian oncologists for metastatic patients is to reduce and delay the next dose of chemotherapy. GSCF drug was only given to early stage cancer patients that needed a full dose of chemotherapy to get a cure from treatment. Having an effective treatment is just as important to a metastatic patient. It’s a well-known fact that cancer treatment is more effective when given the optimum dose and at the optimum time. To reduce the dose and have constant delays due to neutropenia episodes will likely make the treatment ineffective and affect not only the long term survival but quality of life of the patient.
Febrile neutropenia can happen to anyone having chemotherapy irrespective of their stage of cancer. Chemotherapy is the only treatment option given by doctors for metastatic patients in Australia. Why should the PBS rule discriminate when the condition does not. I was annoyed. After everything I have been through over the last 20 months to stay alive, my life was put at risk by a PBS rule.
What surprises me is that PBS rules like this are normally driven by dollars. Yet the cost to Medicare and my private health to keep me in hospital for 14 days far exceeds the cost of this drug which would have seen me released much earlier from hospital.
The thing that upset me the most was the time I spent in hospital I could have spent with my Family. The whole experience was distressing for all of us. The sad thing is that most metastatic cancer patients assume their getting the best treatment and wouldn’t know that there was a drug their not getting that could help them. What a disgrace….
My Ten Year Wedding Anniversary
On the 12th of April Ben and I celebrated our 10th Wedding Anniversary. What a journey. I am grateful for every day I have with Ben. He is a great man and a wonderful father. I am truly blessed with this love.
We had planned a night out but I was in stuck in Hospital. So we didn’t miss out. My sisters organised a Candlelit meal in Hospital with my favourite Chinese takeaway, mineral water in champagne glasses. My local organic store organised a floral centrepiece and a friend sent chocolate coated strawberries. Although not what we planned is was a lovely night and once again the universe has shown the love that surrounds us.
Lucy, James and Anthony’s 7th Birthday – Friends to the rescue.
When I first was diagnosed with metastasis I wondered if I would see my children turn 6. In April they celebrated their 7th Birthday.
Ben and I planned the kids birthday at home. The kids invited 20 school friends for a fun day of Disco, Making, Lego and games. Ben had it all planned out and the Kids were excited. It was originally planned for the first weekend of the school holiday but once again I was still stuck in hospital. We postponed it for the following weekend but I was still in Hospital. Thankfully my oncologist was fully aware of how anxious I was and started giving me day leave from the hospital. I was really fatigued and wasn’t sure how we were going to get everything done but our friends came to the rescue. A group of staff from Ben’s school Catherine, Coreen and Francis made sure everything was done. Catherine catered the food. They helped organise the house and everything on the day. One sister helped me clean up, my brother in-law played tennis with the kids so they didn’t mess things up and, my other sister and our friend Anna made birthday cakes, another friend Marianne organised lollies bags. The day was a complete success. The kids were very spoilt and had smiles on their faces that stretched from ear to ear. Thank You!!!!!
My family and I have so much to be grateful for. We have people around who care so much for us, who go above and beyond to make this easy for us. Who can see when we are struggling and run to our sides to rescue us.
Even though our plans never quiet work out the way we think they should we are constantly reminded that we are not alone, that we are loved and truly blessed. I can look back on the turn of events and smile.
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