You always hear the heart-breaking stories of those fighting cancer. You sympathise with them and their loved ones, yet at the same time feel grateful that you and your family are not affected. That was how we felt until our dad, Michael Cramsie was diagnosed with brain cancer – glioblastoma multiforme grade 4, a lethal form of the disease. Dad was a lawyer and at age 75, was still running his private practice from home and working on his and Mum’s farm in Bywong.
My husband Regan, Dad and I had travelled to the Goulburn races to watch our racehorse run. Whilst we didn’t win, it was still a lovely day. Not far from home Dad suddenly felt quite faint and unwell, although this passed fairly quickly. He had also seen flashing lights though didn’t mention it at the time. Knowing Dad had an issue with blood pressure, we got him home and checked it – all seemed well. I was very worried, but Dad assured me, “I’m okay Kate, truly I am”. Mum had arrived home from town, so we headed home to Canberra to pick up the kids from school. This was Friday, 2 August 2019.
I went back out to the farm the next day and thankfully Dad seemed fine. However, later that night he had a splitting headache, to the extent that it stopped him mid-conversation when talking with Mum. The headache subsided later that night leading to a long, deep sleep the next day. By this time, we were really worried and encouraged Dad to book in to see his GP on the Monday.
That was when our world changed. Based on Dad’s symptoms and the realisation he had actually had a couple of these ‘turns’ previously (which had also been attributed to blood pressure), Dad was sent for a CT scan. After the scan showed some abnormalities, Dad then had an MRI which revealed some lesions on his brain. I remember being at work that day, worried sick and waiting to hear from Dad. Around the time I figured Dad would be finished at the doctors, I was in a meeting. Normally I would never take a call or leave a meeting, though of course I did this time when I saw it was Dad.
Hearing his news, I was devastated although it’s funny the front you can put on. I said bye to Dad, went back to finish the meeting and afterwards, as it was the end of the day, I headed home. I got in the car and cried my eyes out. The kids were aware of what was going on and they could tell by my eyes when I picked them up from school, that it wasn’t good news.
Full body scans showed no other issues, which brought us all some relief. Dad’s GP then referred him to see Neurological Surgeon, Dr Raymond Cook, in Sydney the next week. We were very grateful to get in so quickly yet scared of the urgency for the appointment. I can still remember Dad, Mum, my sister Di and I sitting in Dr Cook’s waiting room, dreading what we might hear, but hoping for the best.
As we sat in his office looking over the scans, Dr Cook theorised what the lesions might be, although looking back, I would say he was pretty sure what it was straight away. What I found most confronting was hearing Dad ask if it was a dangerous tumour, what would happen if he didn’t opt for surgery. Dr Cook, in his calm manner said he would give Dad three months. I was shocked, we were all shocked. A beautiful man who did everything for everyone else, who would give you the shirt off his back. How was this fair? Despite this, as a family we continued to move forward, always hoping for the best and fighting this battle together. So, it was off for more testing, then home for a week to get life in order before returning to Sydney for Dad’s surgery the following week.
The surgery was such a worrying time. We said goodbye to Dad as he headed in. We knew we wouldn’t hear much for a few hours, so we spent time in one area of the hospital, then another, grabbing a cuppa, then waiting in the family room outside ICU. We grew concerned as the hours dragged on until finally, we were notified that the surgery was finished, and that Dad was in ICU recovering. Not long after, Dr Cook dropped in to visit us. He is an incredible man, who took the time to sit and chat with us after hours on his feet, operating on Dad. Without biopsy results we wouldn’t know for sure, however Dr Cook expected the results to show that it was a dangerous tumour.
Dad spent the next week at Royal North Shore Private Hospital recovering from his surgery and waiting to see an oncologist to determine the next steps. Unfortunately, this was a difficult time with a breakdown in communication with the oncologist’s office and Dad waiting each day for contact. This understandably worried Dad greatly, as he was desperate to find out what the future held and what his treatment entailed. Finally, a local oncologist visited Dad in hospital and an appointment was made to see Professor Michael Back, a wonderful radiation oncologist who would work in partnership with a chemotherapy oncologist, Dr Helen Wheeler, another compassionate, caring, knowledgeable doctor.
Upon meeting Professor Back, Dad really found hope and I can still remember him telling me that there was a plan for his treatment. It was reassuring to see him so positive. Dad was also placed under the care of the wonderful Dr Ganes Pranavan in Canberra, for regular check-ups and collection of chemotherapy.
After a week at home recovering, Mum and Dad made the trip to Sydney for Dad’s treatment which entailed radiation every day (for about 8 minutes each time) and chemotherapy orally. Mum and Dad travelled home on the weekends, but then back to Sydney each week. This went on for 6 weeks.
I relieved Mum for one of the weeks and it was so special spending time with Dad. Another week my son Hunter and father-in-law Graham made the trip with Dad, a special time for all as well. Dad’s brother Bernie came down from Brisbane and Dad’s family in Sydney and Mum’s from Woy Woy also visited. Towards the end of this 6-week cycle of treatment, Dad was extremely tired and started losing his hair in a band around his head where the radiation had targeted.
I still remember Cox Plate Day in late October 2019 and how terrible Dad felt, the worst I would see him the whole time, apart from the final few weeks in hospital before he passed away. Luckily Dad got over this and though never as strong as before, he was back around the farm, working on the pump, mowing the lawn, fencing and cleaning the pool.
Unfortunately, by Christmas Dad was having a bit of trouble walking and we sadly gave him a walking stick as a gift. We had a lovely Christmas together that year, amidst the drought and bushfire smoke, it was still so special.
Dad continued with ongoing cycles of chemotherapy and then there were the dreaded trips to Sydney for scans to see how the tumour was reacting to the treatment. In March 2020 the COVID-19 pandemic added another layer of complexity and heartbreak as it robbed us of precious time with Dad as we were in lockdown in Canberra while Mum and Dad were out at the farm. Thankfully it wasn’t too long before we were able to visit again although we sadly missed our traditional Easter weekend and egg hunt.
In amongst Dad’s treatment, we looked to fit in special family time. We had a fantastic trip to Jervis Bay in February 2020. Dad was always in his element at the beach, though another tell-tale sign of the treatment was he started to lose weight and really felt the cold. Later, we found out that this was not only to do with the lack of fat but also where the tumour was situated in Dad’s brain.
Before the Sydney region entered another lockdown, we were lucky enough to squeeze in a holiday to the Hunter Valley in July 2020. Di’s husband, Grant had planned a wonderful trip away for us all. I can remember how happy Dad was to have our family together in a beautiful house, overlooking a vineyard. We spent the next few days touring wineries, eating at some beautiful restaurants, watching the kids playing and enjoying our time together.
In late July 2020 Dad spent a night in hospital as he had a terrible headache and was having trouble getting up in the night. This led to an increase in steroid dosage and thankfully Dad being sent home, to continue as he was.
We also had a couple of lovely trips to Malua Bay on the New South Wales South Coast later that July and again in November 2020. Dad as usual, was just so happy to be at the beach. In November, Dad managed the 200-metre walk to the sand to see the kids playing, even though walking was a struggle for him by then. Throughout this time, Dad was still taking courses of chemotherapy which made him increasingly tired.
Prior to our second Malua Bay trip, on one of the dreaded Sydney visits in early October 2020, we were given the sad news that there was now a new tumour, towards the centre of Dad’s brain. It was then decided it was time for ‘Plan B’ which was a different chemotherapy in conjunction with a new drug called Avastin. It was hoped the Avastin would assist with Dad’s ever-increasing doses of steroid to reduce the swelling in his brain and the different chemotherapy would have some effect on fighting the tumour, where the old chemotherapy had failed. So, the new path was decided.
Dad’s mobility continued to decline, and he was often plagued by headaches and tiredness, although luckily most of the time he felt pretty well. Dad never complained. He still enjoyed a small red wine, a game of Rummikub, watching the races and rugby league and he especially loved sitting on the balcony, looking over his and Mum’s beautiful farm. Hunter had started playing the guitar and I remember how much Dad loved hearing him play ‘Greensleeves’. We all lay in Mum and Dad’s bed together one night, with Dad saying to Hunter over and over, to play it again.
Dad loved classical music and on Friday nights, Mum and Dad loved to watch Andre Riu concerts on television. As a Christmas gift in 2019, we gave Dad tickets to ‘Hooked on Classics’ at the Canberra Theatre. Even up until the day, we weren’t sure if Dad would make it, but he was so determined to go and on that night, 31 October 2020, Dad, Di and I went to the theatre. The concert was amazing, and Dad was just so thrilled to be there, I’m so glad he was able to make it.
Due to the COVID-19 issues in Sydney in November 2020, Dad had his regular MRI in Canberra. Mum and Di accompanied Dad for this scan, and I remember Di commenting just how hard Dad was finding it to get out of the car and move around. Sadly, this scan showed a new, third tumour towards the front of Dad’s brain. Again, we just continued to try and be positive and hope the new chemotherapy would start to work.
In December 2020, Dad had a plan to take our family and some extended family out for a nice dinner. At short notice, Di was able to book a table at a beautiful restaurant and a ride in a stretch Hummer. It was a truly amazing night with each family picked up in the giant car before dining at a beautiful restaurant on the shores of Lake Burley Griffin. Dad was very unsteady on his legs by this time, but it didn’t stop him from enjoying the night. Little did we know that this would be Dad’s last outing.
Christmas came and went, and it was such a special time. Dad loved being there with his family especially his treasured grandchildren Hunter, Eva, Leilani and Grace. He was still eating and feeling well but his mobility had greatly declined. Dad always needed one of us to assist him when he walked and was often resting in his new recliner chair. A special memory I’ll treasure is Dad in his recliner chair on Boxing Day, while the house was quiet from the children who were out playing, so comfortable, listening to beautiful music. So peaceful.
The new year rolled on, but it didn’t start very well. We were trying to help Dad with the cutting and bailing of hay. There were problems with the tractor, and I remember how frustrating it was for Dad. His tractor that he normally did the bailing in. He knew what was going on and wanted to fix it, be in there bailing, but it was just too hard for him with his lack of mobility. Another ongoing issue for Dad was his sight. He had lost most of his peripheral vision from the tumour, and was hard of hearing from the radiation, which didn’t help things. Unfortunately, while trying to attach the bailer, Regan managed to crush the side of his finger off which left us at the Canberra Hospital for days waiting for surgery. Thankfully it all ended well but in hindsight it was precious time away from Dad.
Once Regan was on the mend, the family and lovely neighbours plugged along at the farm, getting the hay in. We had been staying a few nights out there, so after a late afternoon of bailing on Saturday 9 January 2021, we headed home to Canberra. Sunday morning, we were awoken to the news that Dad had been taken to Queanbeyan hospital in the early hours. Just like in late July 2020, Mum was struggling to help Dad during the night with his mobility. This was the last night that Dad was to stay at his beloved farm. Part of me still regrets not spending this last night out with him, though I keep reminding myself I was out there with him and Mum, so many times leading up to that night. What I wouldn’t give for one more night out there with him though.
The next 7 weeks were some of the hardest and most emotional times of my life, with glimpses of beautiful moments amongst many sad ones. Dad remained in the Queanbeyan hospital for 4 days until it was decided the best option was to move him to the National Capital Private Hospital (NCPH) in Canberra where Doctor Pranavan would be able to see Dad and where Dad could work on rehabilitation to get home. Never in our wildest dreams did we imagine that Dad would never make it home. Once at the NCPH, we also met the beautiful Dr Raj from Clare Holland House which is a hospice in Canberra. Dr Raj was Dad’s palliative care doctor. I had heard of palliative care, however at the time didn’t think this would be something that Dad would need so soon.
Each day, Dad worked away at trying to get his strength and mobility back. Initially it seemed things were improving but before long, Dad was having all sorts of trouble with mobility and pain from trying to increase his strength. Mum, Di and I worked out three separate shifts each day to ensure that Dad was never alone. I know how grateful Dad was for this and such a comfort along the way was knowing that Dad knew how much we loved him and how we all would do anything for him.
God bless my beautiful daughter Leilani who accompanied me on many visits, playing games with Dad or ‘Bobok’ as he was known by the kids, drawing him pictures, feeding him, caring for him. While at the NCPH we met some amazing staff, ward manager Nicole, wardsmen Simon and Geoff, nurses Belinda, Brittany, Lily, Jem and Sam, just to name a few. Along with our beautiful social worker Fiona, and Dr Pranavan and Dr Raj, all made a very difficult time a little bit easier. Even Dad’s cardiologist, Dr Hii, dropped in to see him a few times which says a lot about the care provided, or perhaps it was the person Dad was and the impression he made on people.
No matter how hard Dad tried, it seemed that he was going backwards and twice, towards the end of January 2021, Dad had immense bouts of pain requiring the need for multiple nurses, a doctor and extremely strong pain medication to be administered. It was terribly hard to watch this, to see Dad in so much pain. It wasn’t known if this pain was due to the physiotherapy exercises inflaming his back or the location of the tumours in his brain, making Dad feel pain that wasn’t there. Around this time, Dad also picked up a mild infection but after a few courses of antibiotics, thankfully seemed to be on the mend in that regard.
Dad’s mobility continued to decline, and it was decided very sadly, to no longer progress with the rehabilitation phase of Dad’s treatment. Dad went from being assisted in going to the toilet and showering, to the aid of the ‘sling’ which would move him from his bed to the shower and then being bed-ridden. So very sad to see such a normally independent man end up like this. Dad also started to need assistance being fed as the tumour was causing weakness down his left side.
At times, Dad also had moments of confusion, though sad, resulted in some funny stories. One time, he thought he was still at home, and he kept telling us he couldn’t believe we’d put a coffee shop in downstairs. Occasionally he’d revert to many years back to a role he held at the Postmaster-General’s Department where there was an idea to have four main telephone outposts in Canberra. He drew me a diagram of this one day to explain. I’ll always keep and treasure this.
Fortunately, most of the time, Dad was able to really enjoy his food – especially dessert though towards the end, this diminished as well. On Friday 29 January, Dad was sent for another MRI, so Grant and I headed down with him, chatting about life while we waited for Dad to come out. Very sadly, the scans showed the new treatment had not made any impact on Dad’s tumours.
During this time, all we wanted to do was to bring Dad home to his beautiful farm, but the logistics of this proved too much. Living cross border, just outside Canberra made things very difficult. Dad was too unstable in his body to move from the hospital into a car and even a wheelchair taxi wasn’t safe. Ambulances would only take him enroute to a location like another hospital, nursing home or hospice. We also contacted private agencies to hire nurses to assist looking after Dad’s washing and medication at home as he was bed-ridden by now but unfortunately no one would do it. Try as we might, we kept hitting roadblocks. We were also strongly advised by social workers, doctors and nursing staff that the best thing for Dad would be to stay where he was or to move to a nursing home.
By now it was February. Dad had an appointment with a Canberra radiation oncologist to see if radiation treatment was an option again, however Dad was deemed too weak to undergo anymore of this treatment. I’ll always treasure the photo taken with Dad on my birthday, 4 February 2021. Not the best way to spend the day, in a meeting away from Dad discussing what we could do for him. It was decided a nursing home would be the best option and so the next stage progressed to us trying to contact several homes to get Dad entry. We just could not believe we were looking into this option. We would do anything to have Dad home but were conscious to take advice from the professionals and we wanted to make sure Dad was as comfortable as could be.
February continued and we all visited each day, spending precious time with Dad. Talking about old times, or just sitting watching him rest. Every moment was special. I remember sitting there, trying to memorise his beautiful face, his bright blue eyes or his hair that seemed to grow darker after the radiation. I remember the pleasure on his face when wardsman Simon showed Leilani a card trick and seeing her squeal in amazement. It just lit Dad’s face up. He loved his grandchildren so much.
It became apparent that Dad was having trouble breathing at times and we were introduced to a new word ‘aspirate’. This was the fear of Dad swallowing food or liquid and having it ending in his lungs rather than stomach, causing infection. So, Dad’s diet started to change and for a little while he couldn’t consume food through his mouth. Eventually he picked back up and was able to eat normally again, however the consistency of his food had changed.
During this time came more confronting conversations with Dr Pranavan about what Dad’s prognosis was, but we kept praying something would work out. Around 20 February 2021, Dad started to fail, and you could see he wasn’t comfortable. Dad was worried about his breathing and an inability to find the buzzer if he needed help. From then, we decided to include one of us staying overnight with him as well. We were desperate to get Dad to Clare Holland House but sadly, no beds were available.
I remember on Tuesday, 23 February 2021, Dad seemed so uncomfortable and hearing him express how terrible he felt was heart breaking. That afternoon I told him, like I often did how much I loved him, how much we all loved him, and he said, ‘I know you do Kate’. That was the last time he ever spoke to me. As I headed off later that afternoon when Di came in to stay for the night, I gave him a kiss but didn’t want to wake him. A couple of hours later, Di called upset that Dad could no longer talk. We were devastated.
Regan, the kids, and I jumped in the car and drove over to the hospital and met Mum and Di there. This was one of the most emotional moments in my life. Seeing the look on Dad’s face as the kids got to the bed, he was so happy to see them, and tried to talk to Hunter but just couldn’t get words out any longer. It was so beautiful and so very sad at the same time. We all spent time there with Dad, it was incredibly moving. After saying their goodbyes, Regan and the kids headed home. I had never really seen Regan emotional before which I found quite upsetting also. Mum, Di and I all stayed there with Dad. Of course, we would be there for him, but it was so hard hearing him struggle, hearing someone as their life slips away.
We thought we would lose Dad and the next morning, our beautiful friend and Priest, Fr Peter, came to administer Dad his last rights. Again, such a sad time but also incredibly special as we were all there praying for Dad. By now Dad had pretty much slipped into a coma so was comfortable at last, with the plunger of morphine constantly pumping through his system to keep him that way.
The next few days, we all spent as much time as we could there with Dad. Talking about life, just sitting there chatting. We also became very worried about Mum and how this time had impacted her. She had been so stoic, staying many nights with Dad and we were amazed at how strong she remained.
On Friday, 26 February 2021, Mum had gone home for a shower and to feed the animals. In the early afternoon, Di and I were with Dad when we noticed that Dad’s breathing was very shallow. We quickly called the nurses and they confirmed it might be time, so we called Mum who raced back in. We all stayed for a while together and Dad seemed to settle so Mum sent us home (always worried about us being away from our families) and stayed the night.
Later that night, around 11pm, Mum called us to let us know that Dad was very low. Di and I drove straight to the hospital to be there with Mum and Dad. After a doctor came by, it was decided that there was nothing we could do and Dad could be like this for a while, so Di and I headed home.
The next morning, I headed over to relieve Mum and saw a beautiful friend of Dad’s there, Oliver, who had so kindly dropped in regularly to visit Dad. There were also many other beautiful friends and family who visited Dad over the 7 weeks, and I’ll always be grateful for their care and kindness.
Dad seemed comfortable and soon Oliver headed off, then Mum went back to the farm to feed the animals. Di, then Regan arrived, and we spent the day chatting and watching the races, as we normally would on a Saturday. Normally though, Dad would be picking some random winner at big odds. Early in the afternoon, we noticed Dad’s breathing again getting shallower. Concerned, we called the nurses and asked if we should be calling Mum which they confirmed. Very sadly, Dad passed away while I was mid-call to Mum at 2.12pm. I didn’t say anything to Mum at this point.
I had never seen anyone who had passed away before. I could never imagine it being someone so special, or how I would feel. However, it was still beautiful Dad. Regan stayed with Dad while Di and I went down to the carpark to wait for Mum and let her know the very sad news. It seemed weird sitting out in the lovely February sun, with everyone else’s worlds going on while we were devastated. As soon as Mum saw us there, she knew what had happened. Again, so strong. I felt terrible that I had told Mum to go home and rest, that she wasn’t there when Dad passed away, but they say sometimes the person waits, doesn’t want to have their deeply loved one see them go.
Fr Peter came, and we spent the next hour or so around Dad talking. Talking about the great man he was and about his life. Once we were ready, we packed up Dad’s belongings, his hairbrush, his spare clothes, his glasses and his watch that I can remember him wearing since I was little. Beautiful nurse Jem said he would then come in and look after Dad. With our hearts broken, we said our goodbyes and with a final kiss, we left the hospital that was Dad’s home for the last 7 weeks.
It’s funny, one learning I’ve taken away from this journey is that somehow, life goes on. The world was still moving on, we felt exhausted, sad, numb, unsure, heart-broken but comforted by wonderful friends and family. It was my sister-in-law Alana’s birthday, and we needed to be there for a dinner together, keeping up life, particularly for the kids. It just didn’t seem real. We then headed out to the farm to meet Mum, Di, Grant and the girls, to stay the night together, to talk about Dad. To try and get our heads around a funeral and the next steps.
Fast forward nearly 10 months and it still doesn’t feel real. There have been so many tears and special times. Dad’s funeral was Thursday 4 March 2021 and was a sad yet beautiful day, stunning weather and we finally got Dad home as the hearse stopped by on the way to the Church in Bungendore. The doors and windows were opened so Dad could be on his beloved farm one more time. Dad’s funeral was attended by over 300 people, testament to what Dad meant to anyone who’s life he touched. We all commented at the wake afterwards, what a great time Dad would be having. I know he would be there watching over us all.
I still get upset at times when I think about a moment with Dad, one of his jokes, his beautiful blue eyes. Father’s Day was much harder than I expected, then Dad’s birthday even more so. I can’t believe life can be so cruel to take a person who did so much for so many people, who didn’t live a peaceful retirement pottering around the farm. I can’t believe Dad had to struggle at the end like he did. I will always be so very grateful and blessed to know that I had one of the most precious human beings as my dad and hope I will always make him proud.
We are planning a race day early next year to honour the memory of Dad and to try and raise as much funds as we can for the Mark Hughes Foundation to help fight this terrible disease. To look back and know there really wasn’t a chance for Dad, for the limited treatment available, for the shocking statistics. The main comfort I take is knowing that Dad knew how much we loved him. To know you are truly loved by so many, what more can you hope for in life.
Written by Kate Harrison (Michael's daughter)
Michael's family have set up a fundraising page to help the MHF raise much needed funds for brain cancer research. If you would like to donate, you can do so by clicking here