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Remembering Jacob: ‘Leukaemia Sux!’

Remembering Jacob: ‘Leukaemia Sux!’

The McLeod-Steinmetz family
The McLeod-Steinmetz family photographed for a newspaper article in 2014, from left, Jon, Jonathon, Jacinta, Jacob, Deanne and Ryan

Since losing their son, Jacob, to leukaemia 15 years ago, Deanne and Jon McLeod-Steinmetz and family have honoured his memory with special rituals of remembrance, including the Leukaemia Foundation’s Light the Night.

Jacob was 12 years old when he was diagnosed with acute myeloid leukaemia (AML) in November 2003, and his mum, Deanne, recalls the feeling of shock. He had just played at a representative soccer tournament, and throughout his life, had rarely been sick.

Jacob McLeod-Steinmetz
Jacob with the family dog, Bejay, in 2014

“He was my healthiest of four children, always a veggie-eater, and had never had a cold or flu his entire life,” remembers Deanne, of the outer Brisbane suburb, Alexandra Hills.

After four cycles of chemotherapy, Jacob was transferred to the Royal Brisbane Hospital for more intensive treatment, but ongoing roadworks meant Deanne always had to call on the way, saying they were stuck in traffic.

“That’s when the Leukaemia Foundation contacted us and offered us our own unit at their Herston Patient Accommodation Village,” she said.

Jacob McLeod-Steinmetz on the soccer field before his diagnosis
Jacob McLeod-Steinmetz on the soccer field before his diagnosis

“It was just down the road and that was a godsend as the doctors said we needed to be close to the hospital, considering the terrible reactions Jacob kept having to the chemo.”

Due to Jacob’s poor response to treatment, it became apparent that he needed a bone marrow transplant.

“No one in our family was a match,” said Deanne, but a Melbourne woman was found who could be his donor.

Deanne sent her a thank you letter and a little angel necklace.

“Every year on the date of his transplant, I put a message on Facebook saying we are forever grateful to the mother of six that helped us.

“She gave us four more months with our boy.”  

In February 2005, 92 days after his transplant, Jacob relapsed, and his parents were told “to go home and make arrangements”.

“We gave Jacob one last weekend before telling him the news. We all went on a family trip to Sea World and had a great time,” said Deanne.

“On the Monday, we broke the news to him, and he asked us to bring all the other kids into the room.

“Jacob’s the youngest and he sat them all down, put his arms around Jacinta (then 19) and Ryan (15), looked at Jonathon (18) and said, ’my leukemia’s back and I’m going to die. But it’s okay, we’re not going to stop fighting’.”

In the following months, the family dedicated most of their time to making memories with Jacob.

“We went on our Make a Wish trip to New Zealand so Jacob could see snow and our daughter’s boss paid for a trip to Disneyland,” said Deanne.

“We had some amazing moments during that time and made memories that we will treasure forever.”  

By mid-2005, Jacob’s condition was critical. His leukaemia was becoming too much for his body to handle.

“We were able to get him home, far away from the hospital, and he left us peacefully at 5:08pm on 16 June 2005, just a day short of his 14th birthday,” said Deanne.

Since Jacob’s passing, Deanne and her family have established special ways to honour his memory.

“On the first anniversary we went to Jacob’s three favourite soccer fields in Brisbane to spread his ashes as he had wished,” said Deanne.

“It was such a Jacob-type of day with gorgeous weather and all these funny things happened that were very reminiscent of the way he was, like balloons going crazy on the field.

“Now every year on 16 June we go to what we call ‘Jacob’s Beach’ at Wellington Point where we have fish and chips and watch the sun set at 5:08pm.

“It’s really important for us to mark and acknowledge that moment when our world changed forever.” 

Jacob’s brother, Ryan, in his ‘Leukaemia Sux’ shirt at the inaugural Light the Night in 2008
Jacob’s brother, Ryan, in his ‘Leukaemia Sux’ shirt at the inaugural Light the Night in 2008

“I go again at 6am the next day to watch the sun rise on his birthday and we always make cake and pasta for his birthday tea,” said Deanne.

The whole family has attended the Light the Night event nearly every year since it started in 2008 and they made special ‘Jacob: Leukaemia Sux!’ shirts to wear.

“Jacob used to wear shirts with ‘Leukaemia Sux!’ on them and we thought we would continue the tradition,” said Deanne.

“It can be a bittersweet night, but I love going to meet up with all the mums of the survivors who were Jacob’s age.

“We all have a cuddle and chat about how their now-adult kids are going.

“I’ll often also approach someone who you can tell is a newbie to the event and is holding a gold lantern.

“I’ll ask them about who they’re there for, and tell them a bit about my story. I think they really appreciate the chance to talk openly about the person they’ve lost,” she said.

“It’s good when members of the public stop you on the walk and ask what all the lanterns mean.

“I’m always proud to explain we’re supporting the Leukaemia Foundation and research into the disease that took my son’s life too early.”

Deanne, who was unable to attend Light the Night last year, was excited to hear the event would be virtual in 2020.

“This will be a fantastic way to make sure everyone is included, no matter where you are or what situation you’re in,” said Deanne.

“Many families going through blood cancer know how risky it is, just in normal times, not only in the middle of the pandemic, for patients to be in a crowd or public place.

“You feel like the crazy, paranoid mum getting everyone to sanitise constantly, but it really is a matter of life or death for your child.”

Deanne and Jon have also attended the Leukaemia Foundation Bereaved Parents’ Weekend in the past where they formed strong bonds with others who have lost a child.

“Those weekends were amazing and I’m still in contact with a couple of the mums we met,” she said.

“What I enjoyed was not having to put on a front that you’re fine because everyone else knows exactly how you’re feeling.

“You can be angry, sad, crying, or laughing hysterically and there’s no judgment whatsoever.

“You can’t really talk about it too much with others in your life because their eyes glaze over, or they get embarrassed and change the subject. I find that especially when people find out it’s a child you’ve lost.

“Both my parents have passed away and people still easily say to me, ’I’m so sorry about your dad’.

“But after Jacob passed, when I would see some of his mates’ mums in the mall, they would literally turn around and run the other way or duck into a shop.

McLeod-Steinmetz siblings at Wellington Point
The McLeod-Steinmetz siblings at ‘Jacob’s Beach’ at Wellington Point, in 2011, from left, Jonathan, Jacinta and Ryan with a photo of Jacob

“That actually really hurt, and my advice would be that it is much better to say the wrong thing, then nothing at all.” 

Deanne still misses Jacob every day and is dedicated to making sure he is never forgotten, which she considers “the greatest fear for every parent who has lost a child”.

“Jacob will always be my ‘almost’ 14-year-old, and not a day goes by that I don’t think about my cheeky and mischievous boy up there watching over us,” said Deanne.

Music therapy – creative support for the bereaved 

Music therapy – creative support for the bereaved 

Angela Delaney
Music therapist, Angela Delaney

Angela Delaney is a music therapist who is privileged to work with people to explore music-facilitated experiences in deep and meaningful ways where words often fail. In this article, Angela provides insight into how music therapy can contribute to the grief process.

Grief and loss

The death of a loved one is heartfelt like no other, an experience that goes beyond words.

Grief is the natural, normal human response to loss. It affects every part of us – our body, mind, spirit, relationships and feelings, yet can leave us feeling anything but normal.

Understanding of grief and bereavement has shifted. For many, the human process of understanding and living with loss is never really final, complete or resolved, effecting each person in unique ways.

People grieving a death often feel that no one understands what they are going through. We have learnt from those who are living through grief and loss that the help they appreciate most comes from sharing with others who also are grieving a death.

Creative approaches, particularly group music therapy, are documented to effectively support bereaved individuals.

Angela Delaney
Angela Delaney: “many therapists use music with grieving individuals of all ages”

What is music therapy?

Music therapy is an allied health research-based profession that is practiced worldwide. Music therapists apply creative and professionally informed music to support the health, functioning and wellbeing of people of any age [1].

Why use music in in this context? Music is a human phenomenon; an innate human ability, and also the only sensory experience that can activate all areas of the brain simultaneously [2].

Why music?

Music plays a role in the lives of many people. Music helps us to express feelings and memories and to connect with others, which is an essential part of the grieving process.

The elements of music rhythm, melody, harmony, dynamics, timbre, and form address our basic sensory needs. Amidst the power and unpredictability of grief, music and music therapy have the capacity to provide predictability and comfort; ameliorate distress; and provide adaptive coping and wellbeing [3-5].

Music therapy also provides opportunity for choice and control. It enables bonding, facilitates stimulation and relaxation, enhances communication, and fosters positive experiences [6-8]. Using music therapeutically with peer group support can support participants to discover their own way through grief.

How does music therapy work?

To understand the relevance between music and the process of grieving, it is important to be aware of the effect of music on the brain, and the relationship between music and the expression of emotions.

The neurological pathway for sound allows music to affect those structures in the human brain most responsible for emotional behaviour; the hypothalamus and limbic system.

This neurological process may explain why couples decide to choose a song as ‘their song’ to remind them of the emotion of love for each other. It also may explain the effect that movies can have on an audience, through the use of music to elicit sadness, fear, or joy.

Knowledge of the effect music has on the brain has led many therapists to use music with grieving individuals of all ages. The use of original therapist/group-composed songs is effective in decreasing the physical grief symptoms during bereavement and to elicit suppressed emotions due to grief. Research has shown us that specific music therapy interventions such as songwriting and improvisation, support positive growth and the processing of grief.

My role as a music therapist involves using music and all its elements, along with verbal processing to:

  • engage and support the expression of grief and bereavement through group improvisation and songwriting;
  •  facilitate spiritual connection by experiencing pleasure, ‘normalcy’, creativity, and community;
  • create recordings and songs together; and
  • facilitate connection with others and reduce isolation.

Music offers expanded opportunities for aesthetic experience and meaningful communication through its capacity to activate more areas of preserved neural function.

For 10 years, I have had the honour of walking alongside bereaved parents, using music therapy in groups to provide a safe and comfortable environment with others who have also experienced the death of a loved one.

Music therapy in a group session

Following drumming improvisation, the group explores various experiences and emotions around their lived experiences of grief, often allowing emotions to surface that may have been suppressed. Many participants report improved emotional health following a music therapy session.

The depth of personal expression shared amongst the group reminds me of the depth of resilience and bravery we may not even be aware we possess, as I witness and support their exploration of grief.

The level and intensity of emotions expressed during the session varies and at times can sound and feel chaotic, apprehensive, and explosive. Using music involves each group member directly, increasing emotional awareness, stretching imagination, and deepening affective resonance. Songwriting then allows the lives of the bereaved to be told, and acknowledges the existence and the individual nature of grief.

Music therapy has potential to contribute significantly to the experience of grief and bereavement. Music therapy is a pivotal ingredient, to bring comfort, resolution and spirituality and to provide a compassionate space for a family’s transition to the changing interpersonal connection after death.

Song lyrics from a bereaved music therapy group.

The sun rises, the sun sets
Your wings envelope me
I feel a sense of peace
Everything is ok.

Tears of joy
Tears of sadness
Make our own reality.

Feeling so hollow
Like a deep emptiness
So many regrets
As the world moves on by.

The following piece of beautiful music, Elegy for the Arctic, is from Ludovico Einaudi’s album, 12 Songs from Home. It is best watched, at least for the first listen.

Ludovico Einaudi performs Elegy for the Arctic in 2016 on a floating platform with a glacier backdrop in Svalbard (Norway). Watch on YouTube here.

And during an Australian tour in 2020 here.

Listen on Spotify here.

References

  1. Australian Music Therapy Association. What is Music Therapy [Internet]. 2012
  2. Sacks OW. Musicophilia. 1st ed. New York: Knopf; 2007.
  3. The contribution to palliative care of allied health professions. In: Watson MS, Ward S, Vallath N, Wells J, Campbell R, editors. Oxford Handbook of Palliative Care. 3rd ed. Oxford: Oxford University Press; 2019.
  4. Daveson BA, Kennelly J. Music Therapy in Palliative Care for Hospitalized Children and Adolescents. J Palliat Care. 2000 Spring;16(1):35-8.
  5. Hilliard RE. Music therapy in paediatric palliative care: complementing the interdisciplinary approach. J Palliat Care. 2003 Summer;19(2):127-32.
  6. Amadoru S, McFerran K. The role of music therapy in children’s hospices. Eur J Palliat Care. 2007 14(3): 124-127.
  7. Duda L. Integrating music therapy into paediatric palliative care. Progress in Palliative Care. 2013 12(2), 65-77.
  8. Lindenfelser KJ, Hense C, McFerran, K. Music therapy in paediatric palliative care: family-centred care to enhance quality of life. Am J Hosp Palliat Care. 2012 May;29(3):219-26. doi: 10.1177/1049909111429327. Epub 2011 Dec 4.

Meet our national Grief and Bereavement Services team

Meet our national Grief and Bereavement Services team

To help loved ones through perhaps the most challenging experience of loss in their lives, the Leukaemia Foundation has grief and bereavement support staff across Australia.

They can help you understand your grief, talk through your feelings, connect with a support group, or identify when an expert may be able to help. Each of our staff members has a background in nursing or allied health and is experienced in offering support.

To access grief and bereavement support, call 1800 620 420 or email us at grief@leukaemia.org.au

Shirley Cunningham
Shirley Cunningham

Shirley Cunningham, Queensland

I am the national grief lead for the Leukaemia Foundation, a role I share with Donita Menon. I have worked for the organisation for more than 16 years, starting as a blood cancer support coordinator in June 2004. I have extensive experience as a registered nurse and have dedicated most of my career to caring for adults and children diagnosed with solid tumours and haematological diseases.

I have always been drawn to the psychology of people and those dealing with loss, grief and bereavement, and became the grief manager for Queensland 18 months after I started at the Leukaemia Foundation.

In my current role, I work with families in Queensland and those referred nationally for counselling. It is an honour to counsel and support our clients and my ongoing passion is caring for individuals and their families diagnosed as well as those bereaved by blood cancer.

I have studied extensively and continue to increase my knowledge in these areas. I have a degree in nursing, graduate certificate in paediatric nursing, master’s in health loss and grief and a master’s in counselling and Level 1, Gottman Institute training for couple therapy.

It is such a privilege to work for the Leukaemia Foundation and I am humbled to be invited, even for a small time, into the lives of patients and families at such a devastating time. Now with the organisation having grief support available nationally, more families are being supported in their grief than at any other time in our history.

 

Donita Menon
Donita Menon

Donita Menon, New South Wales and Australian Capital Territory

I have been at the Leukaemia Foundation, working as a grief and bereavement counsellor since 2009. In my role as the national grief lead, alongside Shirley Cunningham, I work with clients who have a blood cancer diagnosis, members of their family, and those who are bereaved. I also have worked for Calvary Health Care as a pastoral care worker, in palliative care and in rehab. And prior to that as a primary school teacher for 26 years.

The challenges that individuals and families go through with a diagnosis of a blood cancer is unimaginable. It can be a very lonely space at so many different levels. To navigate life without the person you love can feel impossible at times.

My hope in the work I do, is to provide a safe space for every client to share and process their pain and to work hard to understand each client’s world through their eyes. I believe that every individual has the answers within themselves and through counselling can find a space to grieve, feel the pain and gently unlock a pathway to navigate their life. Going gently, being kind to oneself, nurturing and nourishing oneself and self- compassion are just some of the pathways to healing in grief.

Jane Anderson
Jane Anderson

Jane Anderson, Victoria and Tasmania

I’m currently the Leukaemia Foundation’s Blood Cancer Support Coordinator in southern Tasmania and have recently become the Grief and Bereavement Lead for the states of Victoria and Tasmania.

I completed a Bachelor of Nursing at the Royal Hobart Hospital in 1986. I then went on to complete a Graduate Diploma in Cancer Care Nursing in 1996 and have more than 35 years professional experience in haematology, palliative care, and bone marrow transplant nursing.

I have worked in a variety of haematology oncology specialty areas including The Royal Marsden in London, and as the Bone Marrow Transplant Coordinator for Tasmania at the Royal Hobart Hospital.

I joined the Leukaemia Foundation in 2004 to establish an office in Tasmania and focus on improving support services for patients and families affected by blood cancer.

Passionate about the importance of holistic care for patients and their families, I have always advocated that Leukaemia Foundation support continues for families when a loved one with blood cancer dies. My new lead grief role enables me to offer grief and bereavement support to loved ones.

Shelley McLean
Shelly McLean

Shelly McClean, South Australia and Northern Territory

I have a Bachelor of Midwifery, a Master’s in Social Work and have been at the Leukaemia Foundation for 18 months.

I remember during my midwifery training and was working with a midwife to care for a mum who had previously had a still birth. The midwife was insensitive to the mother’s grief and fear, which retraumatised the young mum and made her birth distressing.

On another occasion, I worked with a midwife who had such skill and compassion, that she helped the family welcome their new baby in safety, while honouring their child that had died. That was when I knew that it was sacred work, and I would be honoured to share in those moments of grief and heartache, but also in the joy of reminiscing and cherishing moments and memories.

That day, I made a commitment to be the kind of person that would stay and allow the tough conversations, and the messiness of grief and loss because deep sorrow requires deep compassion.

I am also involved in the South Australian Women’s Grief Group and wanted to extend this healing on a national level. Being beside someone, allowing them to tell their story and helping to develop their own new meanings for their lives, is very rewarding.

 

Jacqui Baverstock
Jacqui Baverstock

Jacqui Baverstock, Western Australia

I did my Registered Nurse trainings (RGN/RSCN) in London where I then worked in the community and then as a part of a children’s oncology and haematology team.

I started working at the Leukaemia Foundation in December 2016 and was delighted to recently become a part of the grief and bereavement team. I have always had a big interest in grief and bereavement through my close work with the families of patients.

Jenni Bourke
Jenni Bourke

Jenni Bourke, Victoria 

I am a blood cancer support coordinator with the Leukaemia Foundation, based in Victoria, and recently became the grief and bereavement lead in Victoria. 

During my time at Leukaemia Foundation I have had some extraordinary conversations with the people who use our service every day. Many of these reflect themes of adjusting to constant change, managing the unknown, and living every day with the big and little losses that accompany a blood cancer diagnosis.  

Being on the national grief and bereavement team is an important part of providing individual support to families through what can be an intense and unpredictable time of major adjustment. I have a passion for providing holistic care and bring many years of clinical experience to this role.  

I work as an occupational therapist and developed my haematology skills during the 12 years I worked at Peter MacCallum Cancer Centre. The desire to actively provide emotional support as part of routine care has led to much learning, including further study in palliative care, and grief and bereavement I am a member of the Australian Grief and Bereavement Centre and attend many of their workshops and conferences to ensure my practice remains relevant. 

Providing a gentle and compassionate space to allow people to express their story and feelings, to explore existing strengths, to connect with the deep need to grieve and reshape their connection with their loved one, are all elements of learning to live with loss.  

“Trev is still looking after me” says Pauline

Trevor and Pauline with their dog
Pauline and Trevor with their beloved dog, Harry: “We loved him so much. He was so special to us.”

Had Pauline Vedelago been told, 3½ years ago, that she would no longer have her husband, dog, house, job, or live in Bundaberg, she would have said, “are you crazy?”.

“My life was so different 3½ years ago,” said Pauline, 58, who is retired, volunteers two days a week, and writes to her late husband every night, telling him about her day.

While there are many blood cancer success stories, unfortunately there also are stories where treatment is unsuccessful, the disease mutates, and in the end, devastatingly, there are no further options.

Sadly, this happened to Pauline’s husband of 31 years, Trevor Boyd, a teacher-librarian whose prognosis was “pretty good” when diagnosed with non-Hodgkin lymphoma (NHL) in May 2017, aged 55.

Over the next 2½ years, the couple, went back and forth from their home in Bundaberg to Brisbane, for tests and treatment.

Pauline and Trevor in hospital
Pauline with Trevor in January 2018 after his admission to hospital for his stem cell transplant

Trevor’s determination to beat blood cancer

When Trevor didn’t respond to his first or second lines of chemotherapy, he had an autologous stem cell transplant in January 2018, which his haematologist said gave him the best chance of a long-term good outcome.

After six weeks in Brisbane for the transplant, and being told that Trevor looked to be “in the clear”, they went home, but not for long, because an infection in Trevor’s Hickman line turned out to be serious.

“It was called mycobacterium fortuitum, which always made me laugh because I thought it doesn’t feel very fortunate,” said Pauline, so back they went to Brisbane for another month for round-the-clock intravenous antibiotics.

Finally, the couple returned home and glimpsed normal life again – camping together, catching up with friends, exercising regularly, and Pauline started her social work again, part-time.

“Life was starting to look good,” she said.

Trevor was in remission and he went back to work for the last six weeks of the 2018 school year.

“Trev led a very quiet life, very similar to what people do now, really, socially isolating. Any friends who were coming over, we’d make sure they were all well and kept their social distance,” said Pauline.

This year, when coronavirus started, Pauline said it felt really familiar: “This is what we used to do all the time. It felt like history repeating itself”.

Towards the end of 2018, Trevor started to feel unwell. He had fevers and fatigue and assumed it was a virus he’d picked up from the school kids, but after a month, when he didn’t get better, his GP suggested another round of scans.

Pauline and Trevor after Trevs knee surgery
The Boyds, in January 2017, after Trevor had knee surgery and just months before his diagnosis

Another relapse and two different diagnoses

On his 57th birthday, on December 29, he got the news. He had a mass on his lung and within days the Boyds were back in Brisbane. Trevor was diagnosed with a different blood cancer – chronic lymphocytic leukaemia – and started a new regimen of chemo. Soon, however, scans showed that it wasn’t working.

Miraculously, a new drug (venetoclax) had been listed on the Pharmaceutical Benefits Scheme that week, which Trevor started immediately, combined with another immunotherapy, not yet approved in Australia, and which cost the couple “several thousand dollars”.

Then, genetic studies revealed that Trevor had “a really bad mutation, c-myc, which doesn’t have a good prognosis”. An allogeneic stem cell transplant was his only option. Disappointingly, none of his three sisters was a match, and he was running out of time to find a matched unrelated donor.

Next, he was told he actually had Richter’s transformation; a disease that looks like NHL but is “something much worse” because it constantly mutates, and CAR T-cell therapy in the U.S. would give him the best chance of survival, providing he was accepted on to a clinical trial in Seattle.

“If we got the okay, we had to go right away, and have a spare half a million dollars!” explained Pauline. But first they needed passports, urgently, at $500 each.

“Mine had expired and Trev hadn’t had one for 20 years.”

They also were in the middle of selling their home in Bundaberg.

Trevor and Pauline in Adelaide
Trevor and Pauline holidaying in Adelaide

“We just thought, ‘oh well, we can do that’. We’d borrow money from everyone and anyone, get our super, and pay people back.

“That’s the kind of pressure you’re under. I thought I was going to go mad. I could barely cope,” explained Pauline.

“When we had the relapse in January 2019, I couldn’t cope… I had a real little meltdown.

“Trev was really tough, and he was stoic all the way through, but I started to fall apart.

“I got myself together, went to counselling, went to my GP, started antidepressants… because I’m a social worker; I know what you’re supposed to do to look after yourself.

“I thought, all right, I have to be like Trev, to be strong. We just have to keep going.”

Leukaemia Foundation support

Pauline had been in contact with the Leukaemia Foundation and one of our blood cancer support coordinators, Sheila Deuchars.

“Sheila was great. She put us in touch with some Australians who were over there [in the U.S.] at the time doing the same thing and we had been in contact with them.”

But, at the last minute, Trevor was told he wasn’t eligible for the American trial because his disease was mutating.

“That was so disappointing, but we were still hopeful,” said Pauline.

“Trev was writing to professors all over America to see what trials were coming up that targeted the CD20 mutation.”

Then, another miracle, a clinical trial was starting… in Brisbane! Trevor just had to have all the tests and tick all the boxes, which he did. He was eligible, and the trial paid for their travel and accommodation expenses.

“Fantastic, we could fly to Brisbane instead of driving or taking the train,” said Pauline.

Trevor started the trial in August [2019] but, after six weeks, he’d had “absolutely no response”.

“That’s when we had the big conversation with the specialist,” said Pauline.

“He said, ‘we’ve thrown everything at it… you might as well go home and make your end-of-life preparations’ blahdy blah, but there was still one option, ‘we could try high dose chemo as a last resort. Go home and think about it’.

“I knew Trev was never going to give up. He was going to keep fighting. That’s the way he had to go.

“He still was feeling pretty well, still working around the house and gardening.”

Pauline said her worst fear was that Trevor would go to 4W, the hospital ward for people on high-dose chemo, and be transferred to 4A, the palliative care ward.

“For three years, on and off, I’d look at that ward. My sister who died of cancer in 2013 had been in that ward,” she said.

When Pauline suggested they go on the Ghan, “something we’ve always wanted to do”, his response was ‘no, I can’t go on a holiday. I won’t enjoy it if I’m not fighting for my life’.

“I said to him, ‘of course, I’ll support you, whatever you decide’.”

Trevor started high dose chemo in September [2019] and had radiation as well.

“It was pretty awful, just one nightmare after the other, in October, November, until early-December when it didn’t work,” said Pauline.

“Trev was in hospital all that time. I just wanted to be with him, I didn’t want to be anywhere else.

“We were so grateful for the Leukaemia Foundation. I took up Sheila’s offer of a unit at Herston. It was so lovely. I’d get the bus in [to the hospital] in the morning, I could stay as long as I liked, and get an Uber at night to come home. It was so easy.”

It was Pauline’s 58th birthday on December 10, “we got some lovely photos”, and Trevor died eight days before his 58th birthday.

“While all that was happening, we sold the house, and the contract was a story in itself!

“Harry, our dog, died too last year, in April. We had to put him down. We loved him so much. He was so special to us because we don’t have children.”

When Pauline spoke to Living Well With Grief, six months after Trevor’s death, she said it “was wonderful” living in a granny flat that adjoined Trevor’s sister’s house in Brisbane, for the time being.

“I’ve been on my own, but not really alone. I’ve got contact with family, but without feeling like I’m in the way,” said Pauline.

“I appreciate the support and having someone who cares whether you get up in the morning, because so often I just didn’t see the point.

“But every day I’ve got out of bed, because Trev’s sister and her husband have been so lovely to me, I don’t want to worry them about anything.”

Pauline and Trevor on Paulines birthday
Pauline Vedelago celebrating her birthday with Trevor in their Leukaemia Foundation Unit at Herston, eight days before he died

Grief support there when needed

Since Trevor’s death, Pauline has been supported by Shirley Cunningham from the Leukaemia Foundation’s grief and bereavement team.

“I said to Shirley, ‘I’m the perfect client. I’ll do everything right to try and get through this. I’m not going to let it beat me’.

“But I still feel really sh*t, so that’s why I’ve come to counselling. I had my first appointment about two months after Trev died and I knew I wasn’t doing too well, and it was really lovely talking to Shirley.

“I was a social worker for 30 years. I’d never done grief counselling but thought I understood grief a bit. When my sister died, I thought, ‘okay, this is how it works, this is pretty sh*t, but okay, and when Trev was diagnosed, and then when I knew he wasn’t going to make it, I thought I was prepared.

“But you know, losing the person that you love most in the world, nothing really prepares you for that.

“One positive thing about cancer is that Trev and I had plenty of time together to say all the things you want to say, and I’m very appreciative of that, but it certainly doesn’t prepare you for the depth of grief you feel afterwards.

“Trev was really organised, making sure our super was good, so financially, I’m quite comfortable.

“We had grey nomad plans. We’d done a few three-month camping trips around Australia and we were just going to do more of the same… four-wheel driving.

“I do find that hard, letting go of the life that you thought you were going to have.

“It’s just accepting that things have to change. It’s trying to be mindful, trying to live in the present rather than focus so much on longing for the past.”

Pauline said she has experienced a loss of identity: “I was a social worker, but I’m not. I was married, but I’m not. I used to live in Bundaberg, but I’m not. I used to have a house, but I don’t.

“I used to be married, but now I’m a widow. I’m thinking, well, who am I? Who am I without Trev?

“I had a good chat to Shirley about regression, which I’d read about.

“You are stripped back to your most vulnerable self. I felt like I was in my teens again for quite some time. I felt so vulnerable. I didn’t want to talk to anyone, I didn’t want to go out.

“Then I did this complete about-turn. I became the Academy Award recoverer, where you say to everyone, ‘I’m fine. I’m going okay. Oh, not too bad’.

“I did that for a couple of months, because you want them to think you’re okay. You want them to think well of you, that you are recovering.

“I said to Shirley, ‘you’re the only person I’m crying with these days and I don’t think that’s good. I’m just covering up all the time’, so we had a good chat about that and what I should do.

“Grief is a very weird thing. I realise now why you do certain things and I’m very normal. The book I’m reading now is The Year of Magical Thinking which is about the difficulty you have with emotional acceptance.

“I was there when Trev died, but you still have so much trouble accepting it and you still think maybe somehow they’re still alive. I’d wake up in the morning thinking Trev was still alive.”

Making a new life

Pauline has decided to stay in Brisbane, plans to buy her own home there, and is putting things in place.

She has started going to church again and says, “I do have a faith, I do believe in an afterlife, and that has helped”, has become more active in her yoga practice, and has started bike riding with her brother-in-law.

She regularly sees her two brothers who live in Brisbane and has reconnected with a few friends, including an old uni friend she hadn’t seen for 30 years. And Simone, who she met when her husband Pete was sitting beside Trevor during chemo, has become a good friend.

Pauline had always wanted to “do something with people who care for wildlife” in her retirement and due to some divine intervention, she is volunteering two days a week at a koala sanctuary, which is helping her to “just be in the moment”.

And she’s started a journal.

“I’ve found journaling very helpful. At first, when I was just so miserable, I kept writing about how terrible I felt, and I didn’t know if that was helping. Then I received a random text from someone that said, ‘remember the joyful times you had with Trev’, and I thought, that’s what I need to do.

“So, every night I made sure that at the end of my journal writing, I’d write down a happy memory and thank Trev for that. Sometimes that was really hard, but I did that for months.

“And now I don’t do the happy memories anymore, I just do gratitude now. I’m still writing to Trev, but I finish with things that I’m grateful for that happened during the day,” said Pauline.

“I do believe Trev is still present in some form, in some way, and is still looking after me somehow. And I just figured, well, this is my way of communicating with him.

“I don’t think I’ll keep writing to him for the rest of my life, but I’m determined to keep going with it for this year.”

Pauline and friends kayaking Coonarr Creek, Bundaberg for Trev’s tribute paddle
Pauline and friends kayaked up Coonarr Creek, Bundaberg for Trev’s tribute paddle in March 2020

A tribute to Trev

Back in Bundaberg, Pauline used to kayak with a group of women, and one time Trevor joined them.

“One of my friends suggested it would be nice to have a paddle tribute to Trev, which I thought was a great idea.”

The tides were checked, a date was set, and Pauline went up to Bundaberg for the weekend.

“We ended up with 13 people and two dogs, and I decided to take half of Trev’s ashes for a little ceremony.

“Bundaberg ginger beer was Trev’s favourite drink before he went off all sugar, and I put half of his ashes in six Bundy ginger beer bottles, one for each of his best mates, and me, which we carried upstream to a lovely, quiet place.

“I thanked everyone, then they picked up their bottles and I put his ashes in the creek.

“I was so happy I did that and again, divine intervention, it was at the beginning of March, only a couple of weeks before coronavirus kicked in, and I thought, ‘oh, Trev, you’re looking after me’.”

Pauline wanted special mention made of how grateful she and Trevor were to the Leukaemia Foundation, “for everything they helped us with”. In particular, the practical support of “those two months when I lived in the Leukaemia Foundation unit”.

“I’m a regular donor now and I’ll be making a bequest in my will when I redo it again. And I’ve registered for Light the Night.”

Friendship an “absolute blessing” after bereavement

Friendship an “absolute blessing” after bereavement

Lyn Healy and her late husband Don, standing outside
Lyn Healy and her late husband Don

Not only do Lynette (Lyn) Healy and Lynnette (Lynnie) Coupar share the same name, but also the tragedy of losing a partner to blood cancer.

And this has fostered a deep bond and friendship between the two women. They were brought together in sad circumstances in 2016 during the last months of their husbands’ treatment for myeloma.

Lynnie Coupar (right) with her late husband Bruce

While Don Healy and Bruce Coupar were neighbours in adjoining hospital rooms in Cairns, they didn’t meet up until a Leukaemia Foundation blood cancer co-ordinator played a key role in bringing their wives together.

“Lyn and I had met briefly at a carer’s support group but when Donna introduced us later she said ‘you two definitely need to get together. Both your husbands worked in the mines, you have so much in common’,” said Lynnie, 59, of Cairns, who has two grown-up children and three grandchildren.

“Lynnie and I started becoming friends at the day clinic,” said Lyn, 61, also of Cairns, who has three daughters and two grandsons.

“Our boys were hooked up to their IVs and we all started talking. Then Lynnie and I would head down to the cafeteria for a cuppa or go for a walk and talk.

“We hit it off straight away. We were kindred spirits and shared a bit of black humour. That’s really important for some comic relief when you’re living and breathing blood cancer,” said Lyn.

“Chatting away from the boys, we’d talk about their treatments and white cell counts and ask – ‘how are you going?’” said Lynnie.

“We could talk openly about all our concerns. Talking to someone who is going through the same thing makes all the difference.”

Lynnie’s husband lived with myeloma for 15 years. When Bruce was diagnosed in 2001, the Coupars lived in Melbourne. He had a stem cell transplant and “all the treatments under the sun” before going into remission in 2009.

“After such an intense eight years, we really needed a break, so went travelling,” said Lynnie.

They made their way to Darwin where they spent the next six years. Lynnie flew with an airline and Bruce worked one week on, one week off in the mines in Western Australia.

“When we had time off, we’d fly to Hawaii or Cairns or go down to the Kimberleys. It was a fantastic lifestyle,” said Lynnie.

In 2013, when Bruce relapsed, they flew back and forth to Melbourne for treatment until he ran out of treatment options, and from early-2016 he was managed by a haematologist in Cairns. (The Coupars had moved to Cairns when Lynnie’s job was transferred there from Darwin.)

Don Healy’s blood cancer journey was much shorter. Lyn, a paramedic, was shocked by his myeloma diagnosis in April 2015. His only symptom was a sore back, from picking up an esky.

They were in Mt Isa at the time and went to Brisbane to see a neurosurgeon. Don was referred to a haematologist and the Healys ended up staying in the Queensland capital for eight months.

“Being so far away from family and everything was a real hardship. Luckily, we stayed at the Leukaemia Foundation village which was amazing and great for a bit of companionship which was vital during that time,” said Lyn.

She used all the long service leave she had accrued but Lyn wasn’t able to keep her training up-to-date or do shift work while looking after Don.

“The decision was clear – I couldn’t continue to work,” said Lyn.

Don didn’t respond well to treatment. He had a stem cell transplant in Brisbane, experimental treatments in Townsville and in April 2016, had more chemotherapy in Cairns. (The Healys had moved there and were staying with Lyn’s parents.)

“That treatment didn’t work either and the doctor said – ‘we’re sending you home to spend the time you’ve got with family’,” said Lyn.

“We went to the day clinic for blood or plasma and that’s when we met Lynnie and Bruce.”

Lynnie’s husband died in mid-August 2016; they had been together for 40 years.

Lyn went to Bruce’s funeral and two weeks later her husband died on their 40th wedding anniversary.

“We kept in touch well and truly from then,” said Lyn.

“I don’t know anyone else I can talk to about the things I talk to Lynnie about. It’s just invaluable.

“One of the biggest things is sorting through everything in the house, going through all your memories,” said Lyn who offered to help Lynnie with this.

“We had a really good day together.”

And Lynnie has found Lyn’s friendship and humour indispensable since Bruce’s passing.

“When we go around to each other’s place to catch up, we laugh a lot and talk about where we’re going to go from here,” said Lynnie.

“I can talk to Lyn about anything. She’s been an absolute blessing.”

The pair help each other practically, hanging pictures, fixing gates, using sanders, drills and ladders, and theyhave been camping together, each with their own tent and car.

“That was a real concern of mine. I thought I couldn’t go camping because I didn’t have anyone to go with, but Lynnie said, ‘you just need to set the car up and go’.”

Lynnie had kept her late-husband’s ute and had it fitted out with a canopy and Lyn had an awning that came in handy when it rained during their first trip to Ellis Beach.

“It was fantastic. I absolutely wouldn’t have gone if Lynnie hadn’t suggested it,” said Lyn.

“You have to be braver and do things outside your comfort zone. We want to go fishing out on the reef one day too.”

However much they feel comforted by one another, both still feel the pain of losing ‘their boys’.

“Talking the other day, I said ‘it seems like it’s getting harder’ and Lyn agreed, saying ‘yeah, you miss them more and more as time goes on’,” said Lynnie.

“It’s a different kind of loneliness now.”

Lyn and Lynnie have taken part in the Leukaemia Foundation’s beautiful evening lantern walk – Light the Night – where Australians come together to mark their blood cancer journey or to honour a loved one.

“At Light the Night last year, we were asked to share our side of the story,” said Lyn.

“It was hard, but it felt good to do it as it recognised ‘the boys’ and what the Leukaemia Foundation had done for us.

“It felt really special. Telling our story was another way of honouring Don and Bruce. It was a real tribute to their memory. They will never be forgotten.”