I was young, a parent of young children and now also facing life without husband, my soulmate.
At 32 I had been with my husband since I was 16 and married for 10 years. We had 3 children 2,5 and 9. I adored my husband. Whilst out I would find myself looking at him across a room in mid conversation. I’d watch his laughter and mannerisms and think I was so lucky he’d asked ME to be his wife, that he married me. I loved him and loved being his wife. I was the person he was going home with that night, every night. He died on the 24th of March 2000 after fighting cancer for the past 50 weeks. He would never come home with me again. One sure thing about death is its permanency. My daughter recently expressed the permanency of death as, ‘ if you breakup with a boyfriend and you decide one day to text him, you know he’s out there in the universe somewhere. You can send the text. You can attempt to make a connection. He may or may not receive it. He may or may not choose to reply but he’s out there, somewhere. But with death he’s not, there is absolutely no chance he will receive the text, or reply. No chance. So you can’t even contemplate sending it. There’s no point, he’s not out there somewhere. He’s not in another suburb, state or country living his life, he’s gone from this earth, he no longer exists in any tangible sense. Death is permanent. You will never ever have contact again! I hope by writing my story, other people who have felt loss of love through death or other reasons can relate to the emotions, reactions and at times despair and know they are not alone. R.E.M wrote a song, Everyone Hurts https://youtu.be/5rOiW_xY-kc. This resonated with me in my moments of deep grief and sadness. I would listen to it over and over again, and think I’m not the only person who had felt loss or sadness in this world, hold on….. don’t despair, you will get through this, you will be ok. And I am. I’ve learnt you never get over the death of someone you loved, nor do you ever stop loving them, but you learn strategies to live without them, to live with the loss. Initially the painful emotions that flood your mind give you no peace, not a second. With time you begin to notice, moments of peace, between the flood of emotional pain, and those moments, gets longer. One day you smile and laugh again with genuine joy and happiness in your heart. You are in a better place, a more peaceful place. The haunt of this awful experience lessening to a point you now feel more peace than pain. The scale of pain has not gone but shifted. The scales now tilted in favour of calm and peace again. 17 years on and I still feel a sadness, a disbelief that this happened to us. That my husband was the one of all of us, our friends travelling the same path, who got cancer and died. I often say its like we were all travelling on the same path and we got pushed off and our lives started to travel parallel along another path. A path that was harder to bear. Harry has now been dead for as many years as we were together and I have been with my new partner as long as Harry and I were married. There is something that doesn’t sit right with that. Harry is fading more and more into the past. My life moving into the future will now become the majority of my life and my time with Harry the minority. That’s what’s odd, he was such a huge part of my life but in terms of years of my life he’s becoming a smaller portion.
Falling in Love
I met my husband through a mutual friend who played in his tennis team. She asked me to come along and watch her play one Saturday in which I did.
He arrived cursing the Melway map and other drivers for his late arrival. My initial opinion of him was that he was a bit arrogant but very alluring at the same time.
Whilst he played his games, I admired his tall physique, his blonde wispy sun bleached hair and his general good looks. At the end of the match he walked towards the back of the court, put his arms up and clasped the wire with his fingers, tennis racket in one hand, looked through the wire at us, and asked if we’d like to go and grab a bite to eat for tea. He had me there, he looked so alluring! I was drawn to him. That image of that moment standing looking at us I still have printed in my memory today like a perfect Polaroid 📷.
We all went to Sam McGraths pub which was a local drinking spot for him and his mates near his inner city Catholic Boys College. It was the start of summer holidays and he had just completed year 12 and I was about to start mine in the upcoming February.
I was sitting at the bar next to a tall blonde, big breasted, Dutch goddess school colleague of mine. As he entered the pub and approached I was sure he’d spot her and want to talk to her and wouldn’t be that interested in a 156cm, slightly overweight girl with a tinge of Asian in her. He sat right between the goddess and I and turned his attention to me. We started talking and it was easy. It felt like that cliche moment where you feel like you are the only two in the room. That’s when I fell in love. During that conversation I fell in love. From that night we were one. A couple, and I never looked back. He was as keen on me as I was on him. It felt amazing
Leading up to the Diagnosis
Our lives went on as per any normal couple. We got married and three children followed. We had hosted Christmas at our home in 1998. This always involved a fair bit of work. We were in a new home and still getting set up. There were always jobs to do. I remember we were putting up wall paper. He had done this before, he was quite good at it. This time hanging the wall paper he just couldn’t seem to get things right and the end result was not up to his normal standards. At the time you don’t think to much of it rather than , hmmmmm, he actually did a shit job of that but I won’t say anything !
That Christmas Harry had taken annual leave from work and returned to work late January. He was someone who was always happy to socialize with friends if ever there was an invite. This is something I liked about him. I remember back in the February some friends had asked us to Moonee Valley Races. He liked the races. It was a white table-cloth sit down dinner with views of the track. He wasn’t keen to go saying he was tired, but went, however that evening he was a bit flat in mood. In hindsight, the wall paper laying and night at the races are the first signs I believe that something wasn’t right. After diagnosis, our friends said to me, ‘we thought you and Harry had a fight because he seemed in a bad mood, not himself’. So they had also noticed Harry wasn’t himself.
Easter 1999 came. I clearly remember him sitting on the couch and me looking over to him from the kitchen sink and him saying, ‘I think I have depression, I think I should see someone about it’. He is the least likely person I would ever have thought to suffer depression. He had never shown any signs of poor mental health in the past or expressed so. He said there were times he’d been sitting at work and couldn’t focus on his files and just closed them shut. I later found out from a work colleague of his that he had asked her a few times for panadol which she also noted was out of character.
I responded to his comment on depression, by saying, ’ I don’t think you are depressed you are probably just tired. You worked hard around the house on your holidays and didn’t really get to rest and recharge the batteries before returning to work. You probably just need a holiday’. I was quite surprised by his sincerity and belief of his own depression however. Harry had a close relationship with his brother-in-law and I remember thinking to myself, I will give him two weeks and if he is feeling no better I will ring Jay.
That 2 weeks observation never happened. The easter weekend, Harry took to bed thinking he was getting a virus. I remember scoffing about him to a girlfriend over coffee saying ‘men are hopeless, they get a headache and go to bed’. Easter Sunday came and we had a family lunch organised with my parents. I was really looking forward to it. I said to Harry if you feel unwell don’t come, I will take the kids and go on my own. He came because that’s the sort of person he was. He was a family man and it was a family occasion. He looked quite grey, quite unwell and very quiet the whole day. We came home and he went straight to bed. He said to me, ‘I think I’m a really sick man, I have a headache, and it’s getting worse but I have no sore throat or anything’. This moment has stuck with me. It’s like he had a sixth sense. He knew something wasn’t right. I started to feel concerned but almost annoyed as well. He hadn’t been to the doctor and I flippantly said, ‘well you better go and see a doctor and make sure you haven’t got a brain tumour or something’. As that evening progressed he started vomiting and the headache was getting worse. I was beginning to worry he may have meningitis. He had bacterial meningitis as a younger boy. We made an appointment the next morning to see our GP.
7th April 1999, The Day of Diagnosis
Our GP asked what Harry scored his pain as. He replied 8 out of 10. Harry described the pain like hot rods piercing his head. Our doctor ordered a CT scan which was at 3 pm that day at the local hospital.
I got out of the car on arrival to the hospital for the scan and I thought this could change our life. I don’t know why I really though that. I guess tests can reveal sinister things and perhaps it was my 6th sense telling me something.
We were walking into the hospital and Harry just let out a scream. My reaction was one of embarrassment because it was in a public car park but also one of concern. I enquired as to what was happening and he said he had pain.
When Harry was getting set up on the CT table, I somehow found myself sitting with the radiographer with the computer screens that show the CT images in front of us. I didn’t say I was a trained health professional so they had no idea I could have some knowledge of what may be projected to the screen.
I sat there and looked at Harry as the machine started its process. The images began to show on the screens. Over my years I have looked at many X-rays and CT images. By no way am I an expert but you sort of get knowledge of normal images. So when this black space started to appear in Harry’s CT of his brain, I knew this was not normal. This black space was spherical and of significant size. My adrenaline started to course through my veins. I knew this was not a good thing. I looked through the viewing window to Harry, laying there in his innocence me knowing there was something bad, something serious and thought oh my god. Him still not knowing his fate. I look at him knowing there was a mass.
The radiographer stood up, left the monitoring station and returned with another colleague where they both pointed and said a few words. By this stage many thoughts had started to race through my mind. Fear was one.
We were asked to go and wait in the waiting room. I always know that’s bad news. Harry was sitting opposite me and looking at me and I at him. I said, ‘Harry, I think they found something, I think you have a mass’. He replied, ‘no I just have a virus, I will be ok’ and started shaking. I can’t describe that emotion of adrenaline coursing through me. It was like feeling on edge, feeling agitated, a feeling of complete fear and of disbelief. There’s a feeling of fear, we often can say ‘I fear’…. in conversation but only if you have ever really faced fear in it’s true form do you really understand it. Fear feels like a razor in your chest. Your heart palpates, it thumps from within your rib cage. Your chest feels tight, breathing laboured. The blood drains from your face. A numbness overcomes you, your ability to think of anything other than what’s presented in that moment evades you. You are at the height of alertness physically and in a haze as well.
That moment, that moment right there. The moment of realism, of no turning back, that moment of ‘this is happening’. Disbelief, fear, adrenaline, love. That was the moment right there that our lives changed forever….. We were told to go home and call our GP. As soon as we got in the car in the I called him. These words are etched in my memory. The doctor said……
‘I have bad news, in fact very bad news, Harry has a frontal lobe tumour’.
You are hearing the words but it feels surreal. This stuff happens to other people. But this is Harry this is happening to, this is us. This is real. No this can’t be happening, we have three young children.
We drove back to see our GP to discuss where to from here. As we drove there I started to cry. A tumour, I knew this was very serious and by no way good. Harry later said to me, when you started to cry, that’s when I knew it was bad. He said to me that if I was crying it was bad due to my experience working in a hospital.
Our GP organised for Harry to be admitted to the Melbourne Private Hospital that afternoon. We drove home and went inside. Harry’s parents were there minding our three young children. I said, ‘Harry’s got a tumour, and we have to go into the hospital’. At this moment the feeling was that of numbness, a blur. We had all just heard the worst news of our lives. Harry had a brain tumour.
Driving back from the GP, Harry rang his superannuation company to check his terms and conditions. He had been paying 8% of his wage into it but with a young family and mortgage he had opted for freezing contributions for 2 years as we felt that 8% would be better spent on increasing mortgage repayments to pay our home loan off quicker. Harry knew he was on the cusp of that 2 year finishing. What an amazing man he was that in that most awful time, within an hour of being told he had cancer he was worried about his death benefit payout and whether the beneficiaries would receive it or had we left opting back in to late. Looking after us was the main thing right there on his mind. He was relieved to hear his death benefit was still current. We would be ok financially.
At times like this people say, ‘don’t worry about money just take care of yourselves‘. This is such a non thought out thing to say. People mean well I know, but the reality is your bills still need to be paid. Your utilities will be cut off if you don’t pay them and the bank doesn’t feel sorry for you that you can’t pay your mortgage. So reality is, yes, money is a reality, you need to ensure you have enough coming in still. You realistically can’t stop worrying about money. That’s one of the difficulties of dealing with these situations, normal life goes on, the kids need to eat, they need to go to school, the bins need to be put out, the lawns mowed. You are dealing with a terminal illness and the upheaval it causes whilst also trying to maintain the normalities of life. Fortunately we had wonderful support from family and friends. We left the children with their grandparents and Harry and I went into the hospital where he was admitted to the neurosurgical ward.
I just laid with him on the bed. Both of us shocked and scared. Nothing other than observation and commencement of steroids would happen that day. The tumour was causing swelling in the brain and they needed to give dexamethasone to decrease the swelling before an operation could be done.
We laid there still, oh so still for the rest of the day. Paralysed by disbelief. So worried, so scared. I didn’t leave his side.
The day of the operation
This was one of the most scariest times of my life. The neurosurgeon had told us that doing the surgery was not to try to cure or put Harry into remission, that they were only trying to buy us some family time. The tumour was a grade 4 Glioblastoma Multiforme. This tumour was the size of a golf ball and they are like trees with roots. It was a high-grade aggressive malignant tumour and most people die within 52 weeks of diagnosis. The tumour has roots like tentacles that go into the brain matter. It was impossible to remove all of it because that would require a significant amount of brain matter to be removed and life is about quality not quantity he said. If they remove too much Harry would have little quality of life. So the operation was for ‘debulking of tumour’. This would slow growth and decrease pressure on the brain. There was a risk that during surgery Harry could have a stroke or die. I said my goodbye at the hospital and went to my mums. The operation took 4 hours. I laid on my mums couch barely moving for that entire 4 hours. I had my phone in my hand waiting for the surgeon to call to tell me Harry’s fate. I couldn’t talk . I was basically catatonic for 4 hours. I was so scared Harry would die on the operating table and I would never see him again. My phone rang. It was the neurosurgeon saying the operation had gone well and I could come to recovery to see him. There was no cure, but he was alive. The relief! Thank god he was alive. I went into the hospital and was shown to his bedside in recovery. Harry was sitting bolt upright, with a bandage around his head, talking and in a cheery mood. That was surprising. I expected him to be groggy and in pain. He was alive and right now that’s the only news I needed.
The facing of reality
The surgeon came to see us the next morning on the neurosurgical ward. Room 5 Level 5. I will never forget it. I have since had to visit my dad in that very room which was so so hard, so hard to walk onto the ward and even harder into the room. The doctor was there to inform us of treatment options. We agreed to commence a trial for research purposes and radiotherapy & chemotherapy would commence.
I looked at Harry and thought, most people have an operation then they get better. They have their appendix or their gall bladder out or have a broken leg repaired. For Harry, we were only just starting our journey. He was not going to get better. This nightmare was just beginning!
Every professional who came into his room to see us we were waiting to hear them say , ‘you will be ok’. No one said this, everyone said things like you are so young, these tumours unfortunately effect young people, this is so sad for your family, glioblastoma’s are so aggressive, they are terrible’ no one gave us hope that it was going to be ok. Harry in fact said everyone spoke to and treated him like he was dying. That was hard for him when he was fighting to survive. He said to me, ‘I don’t want to be the guy that dies and the next day in the Herald Sun they announce a cure. I don’t want to leave a stone unturned. I will stand in a bucket of shit for 3 days if it means I will get better, I have 3 kids to live for ‘.
One day months on, he also told me how ‘battle weary he was’. How he was tired of fighting the battle, that it was exhausting.
Once we were talking and I said, ‘ Harry, I’m scared you are going to die’. He replied, ‘ you’re scared, I’m shitting myself like a big black dog, I’m going somewhere and I don’t know where I’m going’. I replied, ‘but your dad and Auntie Cath are there’. Harry’s Dad had died when he was 15. He replied, ‘but I don’t know them, I want to be with you guys’. My heart wept for him.
Prior to discharge the palliative care nurse came to see us to discuss what palliative care is and what they could offer us. I was so angry. How dare she be talking to us about palliative care. No! Harry was going to get better! We don’t need palliative care. I was rather short with her. I still think what an awful thing to do. We were still processing cancer, we were not ready for dying.
My youngest son was sick and needed admission to the Children’s ward at Sunshine hospital. I took Harry home and then took my son to hospital where he was admitted with croup for 2 days and I stayed with him in hospital whilst he got well again and family helped to care for Harry and our other 2 children. This couple of weeks of my life had been immensely stressful.
Something that happened during Harry’s illness and my initial years of grief is I took very few photos. You don’t tend to take photos when you are unhappy. There is a part of my life that lacks in the photo memories from about 1999 – 2003 or more. As a result I don’t have many baby or toddler photos of my youngest child which makes me sad now. My mum had been diagnosed with ovarian cancer when I was 16 weeks pregnant with him and Harry diagnosed with cancer when he was 16 months old. I can’t say when I started to take photos again but I sure make up for it now! I take lots now!!! Take photo’s of you all as a family unit. It’s usually one of the two of you in a photo with your kids. Get people to take a family photo. They are precious memories.
Harry initially recovered well . He went to a celebrity sporting night with a couple of Carlton football players at Crown casino with one of our very good friends. It was the first time he had gone out since the operation. That evening I received a phone call from our friend to say Harry had a seizure in the venue ,an ambulance had been called and he’d been taken to the Royal Melbourne Hospital. My heart sank. He had never had a seizure before. I made my way to the hospital emergency department as quickly as I could feeling panicked. I was so worried.
This was the first of many seizures he would have. Grand Mal seizures aren’t a pleasant thing to watch nor have. The kids knew when they saw this happen and if I said go and get Pete ( our neighbour) they new to go straight away and quickly. There were times I would wake at night to Harry having a seizure. I didn’t know then but now I know I must have had significant anxiety. I would find myself laying in bed feeling movement to realise it was my heart pounding in my chest. I was having palpitations from anxiety. The anxiety of always being afraid he would have a seizure. One time we were being driven for treatment to the hospital by one of his friends and he began to feel the aura of a seizure. I was in the backseat and Harry the front passenger. I leapt between the two front seats and helped him the best I could whilst he convulsed for a minute or more whilst we were in the middle of traffic. We were always on edge, because we never knew when a seizure would happen. They came on quickly with very little warning and were aggressive in nature. These seizures would take every morsel of energy Harry had and then for the next 24 hours he would be almost unconscious until re recovered.
New Years Eve 1999. The millennium NYE
For most people this was a NYE to be excited about. Australia was preparing to go into the next century, the year 2000 was days, hours away. The city was buzzing, people making plans, preparing. It was a great year to be alive. It’s a time of writing history. Many people away at holiday destinations after Christmas festivities.
I wanted to be one of the millions of carefree people about to celebrate NYE. For us Harry had been admitted to hospital just after Christmas and we were really hoping he would be home for NYE. His condition was deteriorating and as the 31st of December 1999 progressed through the hours it was becoming evident he may not make it home.
At around 4:30pm that day Harry began to convulse. Every limb and muscle in his body contracted in an uncoordinated manner. His head thrust back and side to side, the hospital bed shook as his body convulsed for a minute and a half. If you have ever sat and watched seconds on your watch tick for 90 seconds, it’s a long time. And watching someone you love enduring something they hated for that 90 seconds is even longer.
When Harry had seizures all I could do was watch and wait for them to finish. He hated them. At 4:30 and having just had a seizure that was lights out for Harry for the next 12 hours at least. The nurses dosed him up with anticonvulsant drugs and he lay there a brink from unconsciousness. As the evening came and everyone left to get ready for their NYE I found myself alone in the room with Harry. My children were with their grandparents. The darkness came and filled the room. I sat their alone. About 9:30 or so a friend rang me and to ask how Harry was. I told her of the seizure and that he was now unresponsive due to the muscle relaxing effects of the medication he’d been given. She hung up and came in to see me. She sat with me in the dim lit room until about 11:15pm. I was so grateful for her kindness, her company.
As the clock ticked over into the new millennium at midnight, I stood up off my chair and in the pitch black room, walked over to the window and watched as fireworks lit up the sky as far as my eyes could see. I was amazed just how many there were on the horizon.
I stood there and stared. Harry was not even aware of my presence. Not a word between us all night. This was the millennium NYE. This is not how I had envisaged us a young couple with young children would have spent this NYE. Me separated from my children, alone in the dark room with my sedated husband.
Watching the fire works felt like I wasn’t really there. I could see them but couldn’t hear them through the glazed hospital windows. Explosions of colour filling the sky. It was like I was there but wasn’t. It was as if I was watching something amazing from space in a world I wasn’t a part of anymore. In a world of normality. I was so craving to have that back again. Normality had been stripped from us by this terrible disease.
When Harry died I would be driving the car and thoughts would flood my mind. One of the many thoughts was, that I couldn’t save him. I worked as a health professional. It didn’t matter what skilled and knowledgeable specialist I could request treat him, what medicine he took or was given, how diligent I was caring for him ensuring he had everything he needed, medicines on time, arrival for appointments, treatments, and love and attention. Nothing, nothing worked. No matter how much I tried or wished or hoped and even prayed, I couldn’t make him better. I couldn’t save him. I couldn’t stop it’s progression and the eventual consequences.
A carefree life
I remember sitting in my family room one sunny Sunday afternoon looking across the road at our neighbours. They had visitors arriving. It was family coming over. There were lots of smiles, kisses, and happy greetings as they walk up the garden path into the house. I watched with envy. Our carefree life that they had, was once mine. Ours had been taken from us. I was grieving that. There was an innocence to that life that I have never really gotten back. Before life’s truths taint your innocence we have, a carefreeness about us. We float through our life in the sunshine. We don’t fear things like you do when you have faced the real worries of life that blind side you on some idle Tuesday afternoon as eloquently said in Baz Luhrrmans song ‘Everybodies free’. This song has become my life mantra.
As life goes on and we gain life experience it erodes at our innocence. This isn’t all bad. Life experiences make us better people if we do choose. When faced with some of life’s harsh realities, when we are forced to see an imperfect world and human frailties or suffering and made to face our own resolve we have choice. At my sons 21st birthday during his speech he spoke about choice. He said when his dad had died he had a choice of turning to drugs and alcohol to numb his pain or to make his life something to be proud of, something worth being alive for and also to make his dad proud. Proud that we lived our lives out as they were meant to be.
The effect an ill parent have on children
My eldest son who was 9 at the time of his dads illness suffered terribly. He was old enough to understand the gravity of this malignant tumour and the likelihood of death. In my research of dealing with children and death I’d read somewhere that by the age of 7 children understand the permanence of death. So for Rupert he was very much affected by the declining health of his Dad.
Leading up to Christmas Harry had been in hospital for an extended amount of time , 8 weeks . This meant for me a lot of time away from the kids. For Harry we had a roster set up so he was never left in his single hospital room alone in case of a unwitnessed seizure by hospital staff. We feared he could have a seizure and be alone in the room and untreated if none of the staff realises. I would go to the hospital in the mornings, Harry’s mum would do the afternoons and a network of friends would stay overnight in his room. Harry found this comforting. Everyone was amazing. I saw a humanity to his male friends only their closest would see. The way those men attended to Harry’s needs. Putting blankets over him to keep him warm, helping place his penis in a urinal bottle when he couldn’t, assisting him with meals. Truly those men were hero’s.
I remember one day whilst at the hospital receiving a call from Harry’s mum who was minding the children. She said Rupert has stomach pain and I think it’s his appendix. He is in a lot of pain. She said she’d rung the local doctor but they had no appointments available. I responded by saying just take him there if he needs to see the doctor. They can’t refuse to see him if you just present there and he is obviously unwell and in need of attention. She did this. When she got to the doctor’s surgery she couldn’t coax Rupert out of the car. He was bent over in pain and couldn’t move. I received a phone call from the local doctor to say he’d just seen Rupert. As Rupert couldn’t get out of the car he’d gone out to see him. He relayed Rupert’s pain was caused by emotion distress and not anything physical.
This was so so distressing for me to hear. My 9-year-old child who I loved to the moon and back was suffering. This whole experience was so painful for him it was expressing itself in the form of physical pain. I felt helpless. My child needed me, my children needed me and so did my husband. I needed my husband . I also was trying to spend what borrowed time we had with him as well as care for him. I also needed to care for my children not only in a physical sense but an emotional sense. My children were hurting they needed their parents.
During this time of illness I was maintaining a home, looking out for the welfare of my children throughout this experience, trying to ensure my husband had optimal care, maintaining my job as a health professional in an Emergency Department job caring for other people’s medical emergencies, and also dealing with the fact my mother had ovarian cancer and was on her own illness journey.
Who cares for the carer? It’s exhausting, it’s mentally horrific and physically taxing.
Most of all how do we protect our children from unnecessary and unwanted pain. To this day when Rupert finds himself under significant stress he gets stomach upsets. Interestingly so does my youngest son Archie. It may have been part of their genetic make up but I always wonder how much has been an ongoing result of trauma in their lives at such a young age. The stomach upset can be debilitating for them with cramps and diarrhoea. Both over the years had medical testing and it appears that’s how stress manifests itself in their bodies and both are aware of this now. Addressing the situation and acknowledging it’s stress related and all other physical reasons have been ruled out has been beneficial. Both the boys being aware stress affects them this way helps manage it.
I would say one of the lasting wounds for all 3 children is the fear of getting a serious illness themselves. They have all acknowledged that because Harry’s symptoms were insidious and ‘just started as a headache’, they now worry if they have symptoms no matter how mild that it may be something more serious. I notice they are all vigilant in seeking medical advise if they have symptoms that concern them. Harry’s illnes was aggressive and had a rapid effect on his health. This has left long-term effects on all of us moving forwards.
We are all aware that bad things happen. There is no guarantee in life that because you have had a devastating illness in your family you are safe from any more. No one knows what tomorrow will bring and we now have a heightened sense of that. Never take for granted you are on this earth for a long time.
I try to encourage the kids to not be hypochondriacs either because that’s an unhealthy way to live life. Be vigilant for sure.
I now live with an unhealthy fear of something happening to my children or Ted. I honestly am unsure if I could bear going through another immensely traumatic experience on that level again. It’s as if I have used every bit of resilience I had to get over losing Harry, that I question if I have any left within me.
Overall my children are doing well. Rupert is now happily married and a chartered accountant, My daughter Jane is into her final years of studying law at university and Archie is an apprentice carpenter and all are relatively well-rounded young adults. (I hope). It’s been a long hard road since Harry’s death 24th March 2000.
A silver lining
At one of Harry’s appointments with the neurosurgeon, as we left, Harry said to him someone has the be the 5%, someone has to have the silver lining. This was in response to initially being told that 95% with this diagnosis will die with in 52 weeks of diagnosis. The neurosurgeon just tapped him on the back of the shoulder as he ushered us out. No words of hope expressed. Harry was hanging on for the silver lining. He once said if I’m going to die I want to beat the statistics, I want to live longer than 52 weeks. I don’t want to be a statistic He died at 50 weeks post diagnosis.
Harry tried everything from traditional Chinese herbal medicines to praying to attending healing priests, to Reiki healers, to Ethereal healing, to meditation, to Western Medicines and he ate an organic diet. He didn’t leave a stone unturned.
The traditional Chinese herbs would be drunk in the form of tea. It was expensive but if it made him better then that’s what was important. We contacted and attended the Ian Gawler Foundation, which encouraged meditation and organic foods. Some how one day we found ourselves driving up into the mountains with a friend to see an Ethereal healer.
We entered his home and was taken into a room with a 1950’s type hospital theatre operating table. Harry got on the table and I sat in the corner on a chair in a sunlit room, a plant next to me. This guy proceeded to perform an operation like a sherade. He had his hands above Harry and operating on him in the air! Then sewed him up with this ongoing theatrical performance. I sat there and watched and couldn’t believe we were doing this. For me it felt ridiculous and I even think humorous. We were just 2 normal 30 plus year olds who lived a pretty mainstream life and here we were now at a place in the mountains having this bizarre treatment . I’m all for alternative medicines but this was ridiculous. There had recently been an ad running on tv for the Medibank Private Health insurance fund, where a guy was being treated by someone slapping two fish together over him . As I sat and watched this ‘operation’ in front of me I couldn’t help think of that add. I thought oh my god we have tried everything now! Get us out of here!!!!
Another day we went to St Paul’s Cathedral in the city with Harry’s sisters and mum. Harry was raised Catholic. He always had faith but not exactly a ‘practicing’ Catholic. When he was diagnosed however he found great strength from his religion. There was a prayer he said every night. He said to me once, I feel like a fake. I never really followed my religion but now I’m praying and hoping. I fully supported him with this. He had lived his life under the Christian faith and was a good Christian. God would not have been judging him for now seeking comfort through prayer. He said to me how your perspectives change when you are staring down the barrel of a gun. If religion gives people comfort that’s a good thing.
Father Rookie was in Melbourne and was a something like a healer in the Catholic Church. I’m not Catholic so not exactly sure how these things work. We went to see him. Harry stood with the other people for his blessing. He touched each one on the forehead and said a prayer. Some fell to the ground like under a spell. It was convincing that this priest just may have some effect. He blessed Harry and he remained standing. To me this was a sign it hadn’t worked, Harry was going to die. Father Rookie hadn’t been able to save him, he wasn’t affected by the prayer, he didn’t fall like some of the others. This was a moment for me when I felt despair. Nothing was working, nothing that we tried. I was emotionally fragile. I needed hope and nowhere we turned gave it. I couldn’t stop crying as we left the church. I cried and cried and cried. His God had not saved him.
The Gawler Foundation promotes meditation. Anyone that new Harry would never have ever imagined him being someone who would meditate. He was a mans man.
Meditation gave him a lot of comfort. It calmed him. One day I was at work and he called me. His voice was excited. He said it’s going to be ok, I’m going to be ok. I was meditating and I just saw this bright light. It will be ok. On the other end of the phone my heart sank. I had recently read an article in a medical magazine I prescribed to talking about people seeing bright lights of similar experiences when within 3 months of their death. People reporting these experiences. To me it was God coming to visit to say you will ok. I’m not an overly religious person by any means. I would have and still do describe myself a luke warm believer in faith.
In my more junior years of my career I had seen many people die. To me I believe an energy force does leave their body. Once that final breath is taken the body is just a body that houses the spirit. I believe in spirits, in an energy force that leaves the body. Where it goes I’m not sure.
When Harry told me he saw this bright light my body sloped, it was another sign to me he was going to die. Hope was running out. This phone call however has given me comfort moving on. The excitement in his voice when he rung to say he was going to be ok gives me calm still to this day. If it was God coming to visit it was a good visit, and I believe he has gone somewhere good and he is happy. My mum and stepdad are now there and they loved Harry. I know they would be looking after him. Each time someone departs this world that knew Harry, I think, there’s another friendly face, you are not alone. The party is gathering, the village wherever you are is growing.
The final days
Harry and I had went to the Old Melbourne Hotel on our 10th and what was to be our last wedding anniversary. At the time this was a really lovely hotel, now a University accommodation I think. We had tea, with my parents there. I think we did this because he was really quite unwell and I needed their support. By this stage he was experiencing left-sided weakness, walking with a stick and having some issues with memory of days of the week, months etc.
They left and we went to our hotel room. I was looking at the breakfast menu and Harry said he needed me to go to the chemist to get him something. So at 1030 at night I headed out looking for a late night chemist. This wasn’t as easy as it is now. After sometime I returned. Harry needed help getting to the toilet. Whilst at the toilet he stumbled. He was 6’1 and I’m 5’1. He was heavy and hard to help. I managed to help him back to the bed. He laid next to me. Both on our sides me turned away from him, him facing me. He started to talk. He told me everything I ever wanted to hear. In a long-term relationship we sometime want to hear what the other person really feels about us. And we sometimes find it hard to say how we really feel about someone. We weren’t a couple that constantly said I love you as often as some say hello and goodbye to each other. We never said ‘love you’ at the end of every phone conversation. I often think when I hear people say it it’s almost as meaningful as can you grab the milk on the way home. We didn’t say I love you much to each other but I can reassure you there was heaps of love in that relationship. I felt loved and never doubted his love.
Although that night laying there, he said every beautiful word I had ever wanted to hear, about how much he had loved me and all I meant to him. I just laid there still listening to him, I didn’t want to move because I didn’t want to interrupt him. It was so nice hearing him say those lovely things to me. It was his good-bye he was saying and I couldn’t turn around because I couldn’t face him. I knew he was saying goodbye, I put my arm up, turned out the lamp and we went to sleep.
I believe in my heart Harry was waiting for each significant event of that year to pass and our anniversary, the 18 th of March was the last one
Early the next morning he woke with terrible pain. So much pain he needed more than his regular Oxycontin, he needed a morphine injection. I rang his doctor and he rang our pharmacy and put an order through for morphine. I had to get Harry home.
He was weak, he could barely stand. How was I going to get him out of the hotel room down to the car. It would have been so undignified for him to be taken out in an ambulance stretcher. I found an inner strength and between the two of us we somehow made our way to the car, him sloped over, barely able to stand. It was a miracle in itself we got to the car without him collapsing midway.
We drove home stopping past the pharmacy to collect the morphine. He went to bed I drew it up the Morphine and administered it. This was the start of the end I knew it. I had never had to give morphine in injection form before to him. His pain had suddenly become so severe and debilitating and he was physically shutting down.
I called his family and strongly suggested they came to visit him. I wanted them to have the opportunity to say goodbye whilst he was still conscious, even though barely. They came and spent time with him. The next morning he was becoming unresponsive. I called an ambulance. They came and put him on their trolley and I walked out of the house beside his trolley, knowing he was never coming home. They loaded him into their ambulance I got in with him and we were taken to the hospital.
He laid there in the hospital bed level 5 room 5. The doctor came and said it was advisable to withdraw all treatment at this stage. He was now unconscious. I said to the oncologist, you wouldn’t put your dog in the backyard and let them dehydrate to death. I requested he be given basic cellular hydration, at least 1 litre of intravenous fluids a day. They honoured my request, and all other treatment was stopped.
I didn’t know what to say to my kids , should I tell them their Dad was dying, should they come in and be there for it. They were 2, 5, & 9. As family we decided they stay at home. The whole time you are trying to make the best decision to protect your children.
The brainstem controls our involuntary functions. Breathing, our heart beating. Harry’s brainstem was not cancerous. He was young and fit other than the cancer that was invading his frontal lobe. Eventually with enough pressure on the brain from the swelling and tumour growth pressure would be applied to his brain stem. The part of Harry’s brain that was affected was his ‘personality ‘ centre of his brain. That’s why before he was diagnosed he thought he was depressed. This was because the tumour was occupying his emotional part of his brain. Other people with brain tumours may become incapacitated in other ways depending on where the brain is effected.
In the end the brainstem will be effected by pressure exerted on it and the body will not function. It will shut down. In an otherwise fit young person this process can take a few days.
We all stayed by his side. Harry began showing signs of pain. He was on a minimal dose of morphine. I requested he be given more morphine for pain relief. Our Oncologist was away and Professor fkwit was the covering doctor. I was told Professor Fkwit was out for dinner at a function and on calling him he told the nursing staff to reassure me this was the dying process. I said you can tell Professor fkwit that I have watched plenty of people die and this is not the dying process, and whilst he is out filling his stomach at dinner, my husband is dying in pain, you die once and this is it and it needs to be as comfortable as possible, someone needs to do something. There is no second chances to get dying right.
The nursing staff agreed. They got the pharmacist to come and asses the drug chart to see what legally could be given to ease Harry’s pain . Unfortunately nothing. I said I don’t care who you get but someone needs to come and assess my husbands pain. His pain relief is inadequate and no one in the 21st century should be dying in pain, A resident from ICU came to assess Harry. He totally agreed with me that Harry was in pain and had inadequate pain relief. He increased the dose and Harry was relaxed and appeared pain-free .
His organs began to shut down. By now only his mum and I were the room. In the early hours of the 24th of March 2000 he began to chainstoke. This is the final breaths a person takes. They breathe a few breaths, then stop, breath then stop and eventually they don’t start again and the heart has stopped beating. This is death. I have always believed the spirit leaves the body at death and the person can see below them, can see their body lying there. So I looked up to the ceiling. I wanted Harry to see my face as he drifted off peacefully. I wanted him to know I was there by his side and that I knew he was gone and he was at peace and that I loved him and it was the one last time we would look at each other.
I stayed in the room as long as I could. I still didn’t want to leave him. To know the nurses would come in, wash his cold lifeless body, tie his toes together with name tags ties with string, lay him in mortuary bag, zip it up over his face and call for the mortuary to collect him. After sometime I had to go and let their processes begin, I was reassured from my own experience in hospitals that this is done in a respectful manner. I was advised to ring the funeral director in regards to arranging collection from the hospital mortuary.
I did this and he was collected and taken to the funeral parlour where the days following we had a viewing. He was dressed in the clothes I had chosen for him to wear. They had brushed his hair funny but otherwise it looked like him. I pulled a little at his trousers pants to see his legs. They were his hairy legs. This was him. I touched his face. It was cold like a piece of meat feels just out of the fridge. I placed a photo of the kids with him on the beach in his casket, said good-bye and I walked away…………
Love Lucy x