WARNING – GRAPHIC DETAILS WHICH MAY BE DISTURBING TO SOME
My Nige has gone. There are hollow spaces everywhere I go, filled with sad loneliness. How can I go on without him when nothing seems to matter anymore?
For our kids. It is Liam and Eva and my desire to be both a great mum, and great dad, to them now that keeps me from turning to cold hard concrete.
He was doing OK but it was evident we were losing ground. I never lost hope that we could turn things around, but the belief had grown smaller of late. In the last 2 months Nige went from being able to shuffle around the house and walk short distances to being bound to mostly bed and a wheelchair. Needless to say he hated it. He was trapped in a failing body and boy was he angry. Rightly so. We knew this chemo was harsh, and really hoped to kick back the cancer enough to give Nige some breathing space to recover from it, but it was not to be. Although the 2 scans he had whilst on Paclitaxel showed that the chemo was keeping things at bay, Nige just never seemed to regain his mojo. The steroids he was on which helped so much with appetite, inflammation and energy had turned him into a strange being neither of us recognised, with a puffed up face and weak bendy legs. The chemo took almost all his hair, and made his breathing and any exertion more difficult. We were stuck – if Nige didn’t do the chemo the cancer would consume him, but doing it was taking so much away it hardly seemed worth it.
I asked Nige if he had any regrets agreeing to this latest chemo and he said that he didn’t and that he could still find joy in his day. Who knows, it may have bought him the last 3 to 4 months. How I loved him for that, for who else could be in a situation so detested and yet find the silver lining. We were made for each other in that regard.
On the 10th of September we took an impromptu family trip up to Auckland. I had work meetings up there and Nige and the kids had been cooped up and bored for weeks, so it seemed like a good opportunity to get away. We were finally using Nige’s wheelchair, which made a real difference to his quality of life. I only wish we had started using it earlier, but it’s a harder step than you think, and all the while we thought Nige would improve. Positive thinking can be both a blessing and a curse.
That holiday ended up being our last family holiday with Nige, so of course I am eternally grateful it all came together. He got to see his brother and niece who live in Auckland, as well as tick an item off Nige’s bucket list – dinner at “The Grill” near Sky Tower. We also made it out to dinner at Denny’s on Saturday night, the Auckland Zoo on Sunday – where we had a fantastic day pushing Nige around and chatting with the kids – and out for brunch another day. It had been too long since we’d enjoyed these simple outings as a family. I imagined our Spring and Summer stretching out together in this manner, glad that the wheelchair could give Nige some much deserved freedom. But of course the cancer had other plans.
While we were away Nige noticed his ankles were very swollen. At the time we put it down to his feet pointing down more than usual after so much time in bed, and his shoes being tight due to the steroids swelling his feet. We were worried though and were going to mention it to his nurse when we got back to Wellington. Other than that the holiday went off without a hitch, and we felt we had reconnected as a family, if only a little.
The next couple of days trundled on as normal, but on Friday night some nasty nausea hit Nige. He had nausea and vomiting all weekend, which seemed out of the blue, but we thought perhaps he could have caught something on the plane, with his immune system being so low. By Monday it had improved a lot, which was a relief.
Then on Tuesday at lunchtime, Nige began feeling some low grade pain in the right side under his ribs. He didn’t mention it me until later in the day. I was sitting in the lounge late afternoon when he surprised me by motoring in from the bedroom, and sitting in his brown lazy-boy armchair. He had a look in his eyes that made we realise he was worried this time. He told me about the pain, and that it was getting a little worse. I suggested he take some pain killers and that we ring the nurse, but he was adamant that we wait and see as he just knew she would send him to A&E, which would mean a long, exhausting night. Liam had Karate and I asked Nige if I should stay home and give it a miss under the circumstances. But being Nige he shunted us off and so we left. By the time we got home at about 7.30pm Nige was sitting in bed on oxygen, not looking any better. The pain and breathlessness had continued, and even the oxygen and sitting still wasn’t making Nige feel any better. I could see this was worrying him – the oxygen machine always made Nige feel better, and he seldom had breathing issues while sitting still. I felt the familiar wash of fear and anxiety come over me as we chatted about what we should do.
A phone call to the hospital left me feeling more confused than ever, the oncology nurse didn’t seem to want to commit to any advice and suggested we call the Hospice nurse instead. I said that we just wanted to be sure with Nige’s symptoms that we shouldn’t come straight into hospital, could she at least tell me that? Finally, she said she would ring an ambulance for us, as the ambos could assess Nige and then let us know whether they thought hospital was necessary or not. I warned the kids that the ambulance was coming, but that daddy was okay, so that they wouldn’t freak out. The ambos were great; thorough, friendly and calm. But they did think Nige should go to A&E, just in case. Poor Nige couldn’t hold back the tears. At the time I thought it was because he hated going to A&E due to how tiring it was, but now I wonder whether he knew this was it. I almost think he had an inkling when the pain first started earlier in the day. Just something about the look in his eyes.
By about 3am the doctors and nurses had Nige settled with all of their tests complete. It looked like there may have been cancer progression in the lungs, but no-one seemed sure as X-Rays are pretty poor diagnostic tools. His blood tests came back fine, his heart looked OK. Blood clots had been suspected but he was already on blood thinners so they thought this unlikely and also couldn’t see anything obvious. He had a pretty good day that day, all things considered, though was still constantly on oxygen. I spent most of the day at the hospital with him, then brought the kids in for a visit, and overall Nige seemed pretty perky. He had sent out a “coffee invite” via Facebook at about 1am so had had a couple of visitors during the day, which always energised him. Later that night we kissed him goodnight and headed off home to bed. I watched Pretty Woman on Netflix and had a glass of wine, texting Nige to say that I missed him. Sleep came before the end of the movie, it had been a tiring couple of days and I felt happy that Nige had stabilised and was in good hands.
The next day I was awoken prior to 7am by a call from Nige on my cell phone. I was immediately concerned as he wasn’t one to wake people up before their alarms went off! Nige sounded breathless and was hard to understand, but I got that he had woken up unable to breath and that the nurse had pushed the emergency button summoning a bunch of doctors and nurses to his bed. It’s hard not to play parts like this over and over in your mind, imagining the fear he would have experienced waking up to this. But the hospital staff had managed to stabilise Nige, enough for him to give me a call and explain the situation. And then those fatal words were spoken, “The doctors want you and mum to be present when they come and see me this morning, you need to be here by 8am”. I knew this was bad. The next hour was a flurry of organising dad to come out and take the kids to school, letting the kids know what was happening and reassuring them that daddy was OK at the moment. I didn’t want them to go off to school worrying. They had a cultural parade at school later that day that they were excited about it. Nige had spent ages trying to find them T-shirts with a NZ flag on to wear. I had ended up going out and getting a couple printed a few days earlier because we just couldn’t find anything online. This is just one example of the lengths Nige would go to make our kids happy, the right T-shirt may have seemed like a small thing, but to Nige and the kids it was all these small details that made their relationship so special.
I made it to the hospital in time, and into Nige’s arms for a much needed hug on both sides. Before long Nige’s oncologist turned up with his entourage. The upshot was that the pleural effusion, or fluid in Nige’s lungs, had advanced again and was considerably compromising Nige’s left lung. Cancer and inflammation in the right lung was also apparent, meaning there was very little working in Nige’s favour. The only option left was to try and drain some fluid from Nige’s left lung and see if it would partially re-inflate. This could give him temporary symptom relief, however only a reduction in the cancer would lead to a more permanent result. It was a slim chance as Nige had had this procedure done previously and it hadn’t worked. Over time the cancer had made the lining of Nige’s lung stiff and inflexible, making it much harder to inflate. As Nige’s oncologist had whispered to him before he left, Nige was in a very precarious position.
Poor Nige. A patient has to sit up for the lung drainage procedure and lean over the wheelie breakfast table. Nige was so exhausted he could barely sit, but he didn’t complain. I watched as they extracted 600ml of fluid from a pocket found in his left lung. And then we waited. If the lung chose to re-inflate, we could buy Nige some precious time. The nurses were closely monitoring his oxygen saturation and heart rate, as the numbers see-sawed between acceptable and critical. Nige seemed to be trying to recover, this procedure had taken a lot out of him. But as I watched I noticed his breathing change and become very laboured. At first the nurses thought it might be his lung trying to re-inflate, but it soon became obvious that they were as concerned as I was. Before we knew it Nige’s oncologist was back and everything started to speed up as the ether whooshed around us.
Nige was dying. His heart rate was becoming erratic, his oxygen levels dropping. His extremities were becoming colder and the soles of his feet mottled. Nige and I had a tearful exchange where he expressed his desire for me to plant a Rimu tree for him after he died. As usual his thoughts drifted to the care of others, the expression on his face as he thought it through to me said “it’s OK Nige, you’ve got it all covered”. And he did. For the last 2 years almost every action had been an expression of his enormous love for his family.
The hospital staff moved us to a private room, and unhooked Nige’s monitor. No more beeping. Our eyes locked and spoke of fear and sadness and love and a desperate lack of control over this nightmarish event. Dad went to collect the kids from school, Nige’s brother arrived from Auckland. Everyone who needed to be there was. We took turns flitting in and out for several hours, between the private room and a family room they had made available for us all. Nige’s eyes flickered open long enough to be able to speak to each of his children, thoughts only for their fear and sadness rather than his own. Courageous and noble and loving until the end. Nige’s breathing became worse, and every time I turned around the doctor or a palliative care nurse was there, saying more words, more words, more words that I seemed to understand but that spun and whirled around my brain. A vortex sucking us to towards point, a point none of us wanted to reach. Various drugs for breathing, anxiety, nausea were introduced, and upped and upped. I had put Nige’s playlist on to cover the sterile hospital silence as he lay fighting. A comfortable blanket I so hoped he could cling to in this state of semi-consciousness. Fighting to live, fighting to die. My heart cracked as the kids came and kissed their daddy goodnight for the last time. Their brave little hearts dealing with the enormity of a situation they should never have had to face so young. Remaining family members took turns whispering loving secrets into Nige’s ear. I so hope the words gave him comfort and strength as he made the rest of his journey alone.
At 9.35pm Nige slipped away. Lying on his side as though sleeping, he had found his rest from an unrelenting and unimaginably cruel disease, that had stripped so much from him and yet left a soul even more beautiful than you could imagine exposed.
Earth below us, drifting falling, floating weightless, calling, calling home.