Peta's Story - "The nights were long and very frightening."

My late husband, Russell Gregory Quinlivan, was born in Victoria on 11 March 1955 and passed away on 27 September 2015 at the Busselton Hospice, aged sixty years. He was a lover of animals, especially dogs and elephants; was passionate about surfing, tennis, football and motor racing; loved natural environments, having travelled far and wide searching for waves and loved his home. He would’ve made a wonderful father but sadly this dream was not realised due to our babies lost preterm over a ten year period.

My husband Russell’s physical and mental suffering began long before the Metastatic Large Cell Neuroendocrine Lung Cancer diagnosis was made in August 2015. For at least twenty years prior, Russell had suffered from chronic arthritis of the cervical and lumbar spine. The arthritis prevented Russell from working and he had to take on a passive spectator role with the sports he had always excelled in; surfing and tennis.  Although numerous consultations with a variety of specialists (pain specialists, neurologists, chiropractors, etc) had occurred and procedures/operations (spinal fusion, rotator cuff surgery, cortisone injections, cauterisation of nerves, etc.) had been performed to alleviate the pain; overall the results were short-lived and as the arthritis became more unbearable, Russell required increased levels of anti-inflammatories and pain-killing medications, such as Panadeine Forte and OxyContin, to get through each day. Throughout these years Russell struggled on, undertaking the ‘househusband’ role whilst I worked as a teacher and deputy principal at a nearby school.  

One day in late June, 2015, Russell phoned me at work, asking me to come home as he had cut his hand on the packaging of a new refrigerator which had been delivered. I could tell by his voice that he was upset. I raced home. There was blood all over the kitchen floor and the cut on Russell’s hand appeared to be deep. He refused to let me take him to hospital, instead insisting I treat the cut and bandage it for him. It was then that Russell told me that his doctor wanted to see him for an appointment the next day to discuss the x-rays which had been taken of his lungs the previous week.  

The next day, the nightmare began...I sat beside Russell as our doctor told him that there was a growth in his lung, close to his heart and aorta, which was approximately seven centimetres long and looked very much like lung cancer. Our doctor had already arranged for Russell to see a respiratory specialist. 

Throughout the next four or five weeks that it took for Russell to receive an official diagnosis from an array of tests (two lung biopsies, a hip aspiration, PET Scans, etc) his health declined dramatically and his weight plummeted. There were night sweats to the point that the bed was drenched, there were chills where Russell would lie shivering uncontrollably, there was more pain in the chest and back, there was vomiting, there were mood swings and there were hormonal induced outbursts of anger. Eventually, Russell needed to be hospitalised because he was so ill. Although Russell had visited the hospital for yet another procedure, it was decided by the specialist that the pain killers were not agreeing with him and he would need to be admitted. It was during this hospital stay that Russell had even more tests and finally received the diagnosis of Metastatic Large Cell Neuroendocrine Lung Cancer. On hearing that he finally had a ‘label’, Russell thanked the specialist, mistakenly inferring that he could get on with being treated so he might be cured. I knew this was not the case as I had bumped into the specialist in the foyer. He had gone out of his way to hold my hand and tell me the news was not good. I could see the look of sadness in his eyes. 

Russell was booked in for a bedside appointment with an oncologist and as a follow up, received three consecutive days of chemotherapy, whilst still in hospital, to supposedly provide some ‘quality of life’ to his terminal illness. Russell was so glad when his specialist told him he could go home even though he was very ill and weak. By that stage, I had arranged to be on ‘Carer’s Leave’ so I could be with Russell at home. At my own appointment with our doctor the doctor kindly mentioned the need for Russell to get his affairs in order and asked if I would like Russell to be referred to the local hospice. I agreed to but made it clear that I wanted to care for Russell at home as long as I could. I knew that home was where Russell wanted to be. Russell never experienced even one quality day whilst at home after that first round of chemotherapy. At first he could just manage a shower and toilet access, both with my assistance. This soon changed. Due to the excruciating bone and nerve pain he was in, I had to lift his upper body and try to swing his legs around and over the edge of the couch to enable him to urinate or vomit. After both, he was exhausted and wracked with agony. It was unbearable to see him suffer so much physical and emotional pain! Bathing for him was adapted to me ever so lightly and gently giving him a flannel wash. Even lightly touching him caused significant bone and nerve pain. This was the legacy of the Neuroendocrine Tumour, a rare type which is a neoplasm (a type of abnormal and excessive growth of tissue mass), arising from the nerve and endocrine system.  

Throughout his final weeks in our home, Russell remained on the couch which was where he wanted to be, not up in the master bedroom. I moved a small mattress into the family room so I could respond to his needs at all times of the day and night. Russell was never demanding though. He tried to maintain his dignity as much as possible, refusing to use the urine specimen bottle I had purchased. His preference was a fact two buckets, one for urine and one for vomit. He told me to label them ‘U’ and ‘V’ so of course, I did. I administered the prescribed medication and regularly took his temperature, recording all medications and temperatures in a log I maintained. I also sought support and advice from the staff in the Cancer Council, together with the two local hospice co-ordinators of the time and of course, Russell’s doctor and specialist. Eventually, with Russell refusing food and unable to stay hydrated, I asked our doctor to make a house call. By that stage Russell’s white cell count had diminished to the level where he was unable to have the second round of chemotherapy. Our doctor decided that the slow release properties of the Fentanyl patches, in combination with breakthrough pain relief, were inadequate in their intention. Russell was then prescribed oral morphine and the doctor also brought up the merits of having the Enduring Power of Guardianship document I had asked him about earlier on, after my own researching online. The three of us talked about death and the inevitable, Russell dying. Russell showed dignity, courage and strength, telling the doctor and me that he was not afraid to die but was afraid of HOW he might die. Numerous times he had expressed to me, "If I was a dog, I would've been put down by now. The way we helped Teddy go.” (Teddy had been our much-loved Tibetan Terrier.) The doctor demonstrated a great deal of empathy, compassion and respect for Russell. At that point, my confidence in the doctor soared. Once on the oral morphine Russell seemed to be much more comfortable and we had our last ever conversation one night whilst I lay next to him on the couch. He assured me that I wasn’t hurting him. We talked into the early hours of the morning: about what sort of funeral he would like; about how he wanted me to create an iMovie of his life; about where he wanted his ashes scattered (Rocky Point, one of his all-time favourite surf breaks) and also that he wanted me to carry on after he left the planet, telling me that the house would come to life again, that all my friends would be able to visit again and that I would meet someone else one day. He also told me that he thought he must’ve had the cancer for a long time and that he was sorry that he never got to grieve for the three preterm stillborn babies we lost, as well as our other losses through miscarriage during the ten years we spent attempting to have a child. We expressed our love for each other and cried together. Just two weeks before his passing, Russell appointed me to be his enduring guardian, in accordance with the "Guardianship and Administration Act 1990 Part A". The "Enduring Power of Guardianship and Acceptance of Enduring Power of Guardianship" document had been prepared by a lawyer and was brought to our home to be signed by my husband, witnesses and me. At that stage the cancer had ravaged Russell’s body to the point where it metastasised into his spine, ribs, shoulders and femur); he was barely able to move; and wasn't able to keep even a drop of water down. The benefits of the oral morphine were lost very quickly due to Russell’s vomiting constantly. I was desperate for help and contacted one of the hospice co-ordinators who made an immediate home visit. She was so kind and expressed to Russell, whilst holding his hand, that he needed more help than could be provided at home. Russell agreed for me to organise an ambulance transfer to the emergency department of the Busselton Hospital. From there he was moved to one of the four rooms in the hospice where he spent his final twelve days. 

Despite the palliative care received in hospice by doctors, nurses and volunteers; Russell suffered terribly....and as his enduring guardian, constantly beside him all day and all night, I suffered too. A sign was created by one of the palliative trained nurses warning loved ones and friends not to touch Russell’s shoulders because of the pain in his bones. During his first day in hospice Russell was provided with intravenous pain relief in the form of a pump, as well as intravenous fluids to rehydrate his body. He was able to be showered, shaved and wheeled into the beautiful lounge/kitchen area to be with his siblings, their partners and other visitors. His condition deteriorated after a couple of days and he was provided with a second pump, as well as being catheterised. Russell wasn’t happy about the catheterisation and, in a morphine and hormonal induced rant, accused me of orchestrating the whole procedure. He also accused me of trying to drown him because he couldn’t swallow a tiny drop of water.  

The nights were long and very frightening. Even though I had tried to educate myself as what to expect when a loved one is dying; nothing could prepare me for what I witnessed and the sounds of suffering I heard, not just from my own husband. Russell’s body began to completely break down and he was almost skeletal. He had always been such a beautiful looking man and despite his arthritis kept himself in good condition. Due to no fault of their own, not all of the nursing staff caring for my husband were palliative trained, and at times, this became an added stress. In his final days Russell had three pumps of morphine, anti inflammatories and anti-anxiety medication keeping him heavily sedated. I know that he could still hear what was going on. He passed away with his closest family members with him. I was telling him it was okay to go, that everything was done. After he passed away we took some photographs of him as he looked so much more at peace and was finally free of suffering and pain. His mouth returned to having full lips, something I hadn’t seen on him for so long... Russell had no chance of any quality of life at all whilst in the final two weeks of his life. Even the most simple pleasures of being able to look out of the hospice window at the blue sky, see the beautiful waters of the bay or be comforted by me, his wife, were robbed from him. 

Three and a half years after Russell’s passing I am still traumatised by what he endured; especially the sounds of his suffering throughout the long, frightening nights when the effects of morphine began to wear off and my husband required "breakthrough'" painkillers. Although Russell couldn't speak, I knew when he was in pain. Hospices are a wonderful asset in our society but without legalised medical assistance, to enable patients to die with dignity, there will continue to be unnecessary pain and suffering. Everyday I look at the site in the garden where Teddy, our much loved little Tibetan terrier, is laid to rest. Thank goodness Teddy was able to be euthanised when he began to suffer at fifteen years of age. It was the humane thing to do...


By Peta Quinlivan