2009 Mingara Relay for Life Speech
2009 Mingara Central Coast Relay for Life – Candlelight Speech - Oct 2009
Hello everyone. What an extraordinary privilege for me to share with you my experience as Ann’s Husband, and as someone who cared deeply for someone they loved.
Ann died 5 months ago (May 09), at the age of 45, after fighting cancer for 13 years. My overriding response since Ann’s death, I am surprised but pleased to say, is a deep sense of gratitude and privilege. This is simply because of the extraordinarily brave, stoic and courageous character Ann demonstrated herself to be, time and again throughout her battle.
My objective tonight is to give you all a big dose of HOPE. Ann’s journey honed her fighting spirit and was fuelled by her purpose for life, to love her boys and see them grow up (me included).
Ann was 33 years old in 1996 when she found a pea sized lump in her R breast. Our boys Luke and Sean were almost 3 and 1. Ann was weening Sean from breast feeding at the time but knew it didn’t feel like a “milk” lump, but hoped it would be a fibro adenoma. I reassured her that I thought it would be OK but Ann sensed my concern for her wellbeing.
After a couple of GP appointments, Ann was in the room of a specialist breast surgeon. He said “The mammograms inconclusive you can come back in 3 months for a review”
OR
“You can have a needle biopsy now, for a better indication”
Ann had the needle biopsy and a few minutes later the specialist said there were some “strange looking cells” and wanted to remove the lump for pathology and full assessment.
A week later, it was removed and we awaited the results. After 3 very long days, Dr rang us on Saturday morning to say he had the results and would like to meet with us this afternoon.
It was an aggressive breast cancer, and he recommended a full mastectomy with removal of some lymph nodes from the armpit.
A week later, Ann’s breast was removed. Pathology confirmed some of the nodes had cancer in them and it “may have” spread. After seeing 2 oncologists and getting the same advice from both, a 6 month course of chemo commenced.
We were determined to play the hand we were dealt, and Ann very quickly showed her true stoic nature in setting to and taking up what seemed a very cruel treatment.
The 1st dose of chemo hospitalised Ann with unrelenting nausea. I came home from Wyong Hosp around 2am, stunned and spinning from what was happening and soon learnt that for me to talk about it was very helpful in setting new direction on an ever changing course.
“If the cancer doesn’t get you, then the treatment will” Ann would say at times, with a mischievous but pained and exhausted voice.
Ann remained determined to see out the course of chemo to give herself the very best chance of getting any remnant bastard cancer cells and to be sure she had done everything to be the mum she lived to be.
Hair loss was a big milestone for Ann who had absolutely beautiful long dark curly hair that even hairdressers would regularly comment they couldn’t believe was all natural.
Ann finished the chemo in 9 months, prolonged by the nausea and pneumonia.
Then commenced an eerie period of uncertainty and questions like “how do you know if any rouge cells evaded the chemical bombardment”? We tinged this with gratitude for the treatment.
I tried to help Ann acknowledge that NO ONE (not even me) will ever be able to understand her situation, other than those that walk a similar path in their own unique way. Ann felt like she was tied to a pole in the middle of a freeway with buses whizzing by on all sides, no choice and big stakes!
Ann learnt to focus on the choices she DID have standing in the middle of this freeway for 13 years. She put her spare time and energy (whilst raising 2 boys) into researching cancer grades, mortality rates, treatments, benefits, side effects and risks. She gathered medical reports on the latest trial drugs via the internet and remains on many medical sites as “Dr Ann Town”, the only way she could get the reports, and in all fairness, a deserving title given the amount of knowledge Ann amassed.
So began the extraordinary juggle of a changed life. We felt ripped off, pissed off, then responded with acceptance, investigated the options, refocused and dealt with each challenge with purpose; we chased a cure, life extension, quality of life and just plain “hope”. This natural response cycle became clearer to us over the next 13 years and we gave ourselves permission to be angry and became aware of trying to do that in a healthy way.
We were single focused in our pursuit of the best care, treatment and response; however our emotional states were often out of synch.
Confronting Ann’s mortality was a major challenge for both of us. In 1997 we started to attend our local Baptist Church and sought God’s guidance and strength, and for me an answer to the niggling question “what did I do wrong to bring this on my family?” A common response with mixed value, mostly unhelpful.
With time the questions and uncertainty about whether “the cancer” would return, slowly faded in frequency and amplitude, but never left.
In 1999, 2-1/2 years after treatment, the cancer did return in the lymph nodes behind her R collar bone. It was like an atomic bomb was dropped smack bang on us.
Devastating is the only word for the 1st recurrence. The shock was not as great as the original diagnosis, BUT the significance was very different because the spread of BC is like a death knoll.
Ann’s new oncologist recommended radiation treatment and said “whatever you are doing, keep doing it” because Ann was again a picture of beauty and health with her curly hair regrown and beautiful bright eyes.
6 weeks of radiation was completed.
Although no medical cure is known, chemo can knock it down and can get you back into a place we came to know well, Remission. This is when no cancer can be detected by scans, BUT it can still be there microscopically. It’s like an oasis in the dessert, combined with a waiting game of uncertainty. We tried to be grateful for each remission, each time.
This is when we became strong followers of HOPE. Hope for more effective treatment; hope that God would answer our prayers for a cure. “A miracle about now would be really good God”. Hope was a constant companion, many times it faded as it lagged a long way behind, but it never left us, it just took different forms.
In 2000 it spread to the lymph glands around Ann’s air pipe. We reined in our thoughts as suffocation was a natural extension of our thinking, if the chemo didn’t work, however it did, and I remain amazed and grateful for this one.
Ann got on with living the bald life. It didn’t matter what she wore, peak cap, bandana or bald head she always looked beautiful with her shapely skull and deep brown eyes, not to mention her tenacious sense of humour that would laugh at the enemy, and the fragility of her humanness, all very engaging.
In 2001, rice like lumps developed on the skin around Ann’s Collar bone. This site would recur and then relent (to remission) several times, from 2001 to 2004 with Chemo applied for 3 months per year.
From 2004 to 2008 the chemo frequency increased to fortnightly and then weekly, all year round, to keep the known tumours from worsening.
In parallel, I was feeling the stress from the mental and emotional effort of being there to help Ann fight the disease, work full time in a challenging job, and raise two wonderful boys.
The toll was far greater than I realised and in 2005 I burnt out, big time. Commitments at work and home had gathered unhealthy momentum that necessitated me drawing a line in my workplace with regards to workload. This precipitated a few tears from the relief that I had finally said, enough is enough, and hoped to find some balance. The OHS nurse recommended a visit to the GP who gave the diagnosis “clinically depressed” and was given two weeks off work.
In hindsight the depression is more apparent, but is a very insidious and serious illness and is not to be ignored. Better to be proactive and get started on medication than go below the line as many do, and as I did. Understandably, this was not what Ann needed happening in her life, she had enough to deal with and found it very difficult to accept.
It was at this time that I rang my pastor and said I was in a place I never expected to be. That place was hell. I had started medication but things seem to get much worse before they got better.
I would wake with anxiety attacks, heart thumping almost every two hours, throughout the night for about 2 weeks. I was a walking zombie from sleep deprivation. I decided to get up at 6am and seize the day, regardless of the lack of sleep, and go for a walk listening to contemporary Christian Gospel music on my i-pod, a priceless present from Ann.
I saw a counsellor for 3 months and found that when I awoke, getting up and journaling my thoughts helped empty my mind and get some form of rest.
Looking back there was a number of factors that turned this desperate time around.
· Focus on and do small tasks like school lunches, laundry, an outdoor activity, relaxation, dinner and wash-up.
· The love and support of family, special friends and my church.
· I also recall promising Ann that “we will get through this together” I had no idea how, but together was the only way!
· Whether it’s a bloke thing or the engineer in me, but I was wasting a lot of energy trying to fix the frequent havoc the cancer caused. Mission impossible! So I started to choose my battles more carefully.
· A key turning point for me was to surrender it all to God and trust in His character of unconditional and unfailing love. Anyway, I figured if I can’t give it to God, who can I give it to?
· I never stopped asking God to provide healing, but I also accepted God is God, that’s a good thing, and to even dared to enjoy Him.
Back to Ann.
In April 2007, it spread to Ann’s left lung. Another shocker, but we rallied and faced it head on, we had learnt that “one day at a time” was the only way to travel.
One of Ann’s greatest fears was of the cancer spreading to her brain. This was understandable with the proximity of the skin metastasis on Ann’s neck.
In July 2007, a brain tumour was found. This was a hurdle of unprecedented magnitude that Ann approached with equivalent courage and had brain surgery.
Ann’s planned trip to Melbourne, to attend the launch of the BCNA’s “Hope and Hurdles” support pack for women with ABC, was under threat. Ann had participated in its development for over 2 years with other women with ABC from each state.
About 2 weeks after brain surgery, Ann & I were in Melbourne with the other state reps and the BCNA team. It was a gathering of truly courageous ladies with amazing insight. One lady observed the journey sensitises you, or put another way, pain gives perspective to life. I was stunned by Ann’s resilience and so was everyone.
Stephanie Dowrick, a renowned psychologist and author, observed that “Those that love well live well”. This has been a great compass for me over the years. As a man I know it is important to have a shed and my own time but NOT go there in “retreat” but to do all things with intention and balance.
In relation to depression, I re-engaged counselling once a month. In addition I start a strenuous exercise routine at the local gym 3x per week. I highly recommend these avenues for their effectiveness and remain engaged in them at present.
The disease claimed many we came to know along the way. Patricia, who led the development of the “Hope & Hurdles” pack sadly died not long before the pack’s official release. The cruelty of loosing other young local mums such as Ann Richter, Pam Williams, Jasmin and Peta always cut deep as did the higher profile ladies, such as Belinda and Jane who handled themselves beautifully. Then there’s others gone on ahead because of other cancers, such as young dad and friend Chris Rootsey, Kym, a great mate’s sister and young mum, Dr Chris O’Brien whom we had the privilege of walking around this track with in 2007, PLUS the many many loved ones you all remember here tonight. Ann is in good company.
We have particularly rich memories from attending the BCNA’s field of women event by wearing pink ponchos and making one huge Pink Lady with some 11,000 others in the MCG and Homebush stadium, in 2005 & 2007. Also, in 2008, we were interviewed by KAK in conjunction with the NSW launch of the “Hope & Hurdles” pack.
Feb 2008, found another brain tumour that was zapped with stereotactic surgery.
April 2008, found a new primary breast cancer in Ann’s L breast. Like a true champion, Ann engaged the enemy of her life and underwent surgery.
It was at this time that I commenced to work from home on a regular basis. This was a particularly helpful step that facilitated caring for Ann and still enabled me to engage with work and workmates.
Over the last 18 months of Ann’s life, Palliative care provided priceless back up by guiding me in selecting medicine doses to give Ann relief from worsening pain and nausea from liver metastasis.
Aug 2008, Ann’s battle stepped up when lung metastasis led to a collapsed lung and 6 litres of fluid was drained. Surgery re-adhered the lung linings at a Sydney hospital.
Ann’s recovery went well for 2 days and we celebrated our 17th wedding anniversary with a lovely cake provided by the hospital staff. A pretty pair of ear rings brought a smile to Ann’s face. With little reserve the pain was almost too much for Ann at this stage and the next 3 days saw Ann regress to be on a fine edge.
We looked desperately for ways to transport Ann home, or to a Central Coast hospital, but it just wasn’t viable for Ann’s condition, even in an ambulance.
You can’t imagine my surprise when I arrived at the hospital the next morning to find Ann up and showered with a sparkle of determination in her eye saying “I feel like I turned a corner last night and am ready to go home”. Extraordinary!! I knew Ann was really crook when we drove past Westfield Tuggerah without a word. We were elated to have Ann home.
Liver metastasis worsened over the next 8 months, despite free trials of the latest drugs available and Ann died in the wonderful care of the staff on M2 ward at Gosford hospital, after being hospitalised 2 weeks earlier with chronic vomiting and liver pain.
This is not the way the journey ends because Ann chose to have palliative medicine in her last days. Initially her vomiting stopped and pain receded, so we could talk, hold, touch and caress her. This had been prevented for far too long by the liver metastasis. Eventually it led to a deep sleep and peaceful passing 3 days after commencing it.
This time gave a deep sense of healing and relief to me, as Ann escaped the cruel hold of constant pain and nausea. It also affirmed the priceless value of enabling family and friends to say goodbye, share hugs, memories, many tears and love over these last days, and this is now a deeply held treasure that I will carry into eternity.
As sure as I stand before you, there is hope for all of us. The courage that Ann regularly displayed gave me the courage to share with you this evening. I have always been petrified by the smallest public speech and would avoid it like the plague. I know that I have been transformed through this trial.
Ann didn’t loose her battle with cancer, she lived her life as master of her ship, true to herself and made every necessary decision with informed precision. Ann took control and lived life regardless. Ann fought with passion, spirit and courage, and this was clear to all who came to know her.
HER BOYS (Luke, Sean & I) always were her reason for giving her very best, and we carry the truth of knowing Ann’s unending love for us.
One other benefit we found was to plan a holiday, even when treatment seemed to have no end in sight. Holidays away concreted our relationships; these are our greatest treasure in life.
A final heartfelt thankyou to you all for listening, to all our family, friends, schoolmates, teammates, workmates, church mates, doctors, nurses and other carers particularly the BCNA, Cancer Council, Palliative care and Gosford M2 ward staff. You have had an immeasurable impact by giving us reason for much gratitude and growth from these hard but extraordinary years.
I thank you all, and I wish you much love, peace and a goodnight as we walk on with our loved ones, to find a cure!
Goodnight!