Let’s Talk About Dying

The dreaded word – death. I watched a video on Facebook yesterday by Doctor Kathryn Mannix. She talks about our reticence to discuss death, how this can cause death to become a stressful, anxious and fearful experience and how the whole process could be so much easier if we talked about it and understood it more. Her video struck a chord deep inside my soul and brought to the fore a very real need I have to bring this subject out into the open and ‘tell it how it is’.

The most intimate and traumatic experience I have had of death thus far is when my father died after a long battle with cancer. I found the whole process traumatic, stressful and completely heartbreaking. This experience led to a period of grief and depression for me. My brain simply could not process the vast quantity of emotions, memories, and questions that the whole experience opened up. I ‘checked-out’ for a period to allow myself time to ‘catch up’ and heal the deep wounds that I was left with after his death.

I am a management consultant by trade and not by accident. My natural tendency is to apply order, logic, and structure to absolutely everything. If I lose those aspects in my life, I am generally in trouble. Therefore, in order to look back at my experience with death, I need to structure it and deal with the various aspects in an organised fashion. This is not because I am cold and un-emotive, quite the opposite, it allows me to learn from the experience without keeling over. Hence you will find that I talk about my father’s death almost as if it were a transformation project – ironically that is exactly what it turned out to be.

I have categorised what happened during my dad’s illness and subsequent death into three work-streams: 1) living through my dad’s illness 2) managing the grief and 3) learning to live without him. I have already written blogs on workstreams 2 and 3. This blog is about workstream 1, living through my dad’s illness.

He had a deep and dark fear of death not helped by witnessing one of his close friends die from bladder cancer. But also, because death was not discussed openly or without fear in his generation.

My dad started with polyps in the bladder, sadly cancerous ones. After the initial diagnosis, his life was pretty much unchanged apart from a trip to the hospital every few months to remove them. None of us were particularly worried, this approach went on successfully for a few years and my dad had a good quality of life. Then one day things changed. The polyps had become more aggressive and started to invade the lining of his bladder. A couple of options were suggested, but based on the fact that my dad had bowel cancer earlier in his life, radiotherapy with some chemotherapy was chosen as the preferred route. My dad dutifully went off to attend his sessions and we all hoped/assumed/believed that this would be the end of it. But it wasn’t. I went with my dad to the hospital to see whether the treatment had worked and stopped the cancerous growths. It hadn’t. I went in to see the consultant before my dad, he didn’t know as he was still in the treatment area. I’d asked to go in because I wanted a direct and straight assessment of the situation and how serious it was. I got that assessment from the consultant but I never told my dad. I waited to go back in with him and let my dad ask the questions as he only ever really wanted to know ‘so much’. He had a deep and dark fear of death not helped by witnessing one of his close friends die from bladder cancer. But also, because death was not discussed openly or without fear in his generation. My dad’s response was to limit how much knowledge he had and to focus on the next potential solution.

The consultant, sadly whose name I cannot remember, was one of the few people to actually answer my blunt questions directly and without dressing up the answers. I will be eternally grateful to him for being straight with me. It meant that I was able to prepare myself for the journey ahead, or at least, it gave me the illusion of being able to do so. And so, this was the first heartbreaking milestone in my dad’s journey, the start of the realisation that we may not win the battle with the cancer.

My dad was then left with two options: to go ahead with a cystectomy (removal of the bladder) or continue as-is and make the best of the time left. The first option was incredibly high risk. As my dad had already had part of his bowel removed (due to his bowel cancer 20 odd years earlier) and radiotherapy the risks were much higher than normal. The earlier operation to remove part of the bowel meant that my dad would probably have scar tissue that might make removing the bladder tricky and result in a tear in the bowel, which would render him much sicker than the cancer. Secondly, the radiotherapy meant that his cells would not heal as quickly or at all, as many of them had been killed off. All in all, it was a shot in the dark with a much lower chance of success than normal and a higher chance of mortality during or immediately after the operation. My dad had the heart of a lion and chose the first option. His rationale was that if he died during the operation he would not know anything about it and it was the only option he had for any kind of meaningful life. The decision made me feel physically sick, I didn’t agree with it but it wasn’t my decision to make. I wanted him to take the quality time he had left and carry on with the palliative approach, which could well be another 2-3 years according to my unqualified, medical reckoning. I had to work this out for myself as trying to get straight answers out of the medical staff by this stage was simply impossible. No one wanted to talk about death, their job was to save lives. I, on the other hand, wanted a realistic risk assessment of the options and most importantly the quality of life my dad could achieve with each. I prodded and questioned as much as I could but he was determined and so that was the route he took, for better or worse.

On the eve of the operation, my mum, sister and I took my dad to Derby hospital. We stayed nearby in a hotel and returned early the next morning, to be there when he went to theatre, just in case it was the last time we saw him. The consultant came around and was straight with him about the risks but my dad was unmoved, he was determined to go ahead. We said goodbye to him at the operating theatre and went and sat outside the hospital to wait for the outcome. My nephew and niece arrived later that day and we were all sat in the hospital café when the call came through. It was the consultant, he had aborted the operation. Despite his and other more senior surgeon’s best efforts, they could not find a way to remove the bladder without ripping his bowel, which had stuck together like tissue paper after his earlier operation. If they continued he would die. They made the decision, influenced in no small way by the large and loving family my dad had, that is was better for him to take the time left with his loved ones rather than throw it away on an impossible task. And so, this was the second, heartbreaking milestone in my dad’s journey. When he came around from the operation he thought he had made it, having to watch the consultant deliver quite the opposite news was tragic. The realisation dawned on my dad that his clock was well and truly on.

My project plan didn’t accommodate maybe’s or grey areas. I wanted to know rough time-scales, the next steps, milestones, likely scenarios, what we needed to do, by when. I needed a re-plan.

I remember following the consultant out of my dad’s room, I needed more – a straighter more direct conversation. My project plan didn’t accommodate maybe’s or grey areas. I wanted to know rough time-scales, the next steps, milestones, likely scenarios, what we needed to do, by when. I needed a re-plan. Despite my best efforts, he would not be drawn. He simply kept repeating that my dad should come home and make the best of the time available. He never once mentioned death or hinted at what was to come. He thought he was being kind, sparing us the detail, avoiding the word ‘death’ like the plague. But he wasn’t being kind, I was at my wit’s end. I had a project to manage with no time-scales, no activities, no process and no way of finding out about any of this. I had a desperate need to ensure that my dad had the very best death possible but no one wanted to talk about that and we had no idea what it all meant. My sister and I resorted to the internet for information and found little comfort there.

Upon my dad’s discharge from hospital, things went downhill rapidly. The operation has resulted in constant bleeding which would not stop, mainly due to the radiotherapy. Eventually, he became so weak he had to be re-admitted for blood transfusions and further operations to stop the bleeding. This carried on for months with a few periods of respite which were short-lived. Then came the breathlessness and constant feeling of having a blockage in his throat. Then one day it got so bad he was taken to A&E. He was left for hours on a trolley in terrible pain. When the consultant came in to assess him it took a while to realise that they had no idea that he had terminal cancer, they did not have his medical records. Eventually, he was admitted and a series of tests carried out. For the first time in many months, a kind consultant sat down to explain that the cancer had spread. There was fluid on his lungs which we needed to drain to help with the breathing and that we should start to think about end of life care. A nurse came along to ask my dad some questions. One of those questions was about where he wanted to die. “In a hospice” he immediately responded. He was scared and wanted to be somewhere he thought would be able to meet his needs and keep the pain at bay. It felt like 0 to 100 miles per hours in seconds.

We had spent months in and out of hospital with no real conclusion to his symptoms and no discussion of death or the spread of cancer because people don’t want to have that conversation. Instead, we were left constantly worrying that we should be doing something to make my dad better. There was nothing we could have done. But there is something others could have done. Been honest with us, removed the fear, anxiety and not knowing. And then bang, one day we are told it’s spread and we are talking about a hospice. How the hell can anyone process such life-changing information that quickly? If only someone, somewhere had the courage to speak to us more frankly earlier in the process, so much angst could have been avoided.

From there on in things did become a little more organised. Macmillan nurses became involved and tried their best to get my dad to talk about death but he just couldn’t. And that meant that we couldn’t. I had to follow the nurse out of the house to ask what we really needed to know or call her without him knowing. Such was his fear and also anger that he had to die before he was ready. There were many more hospital stays to come, each time the medical staff took great care of my dad and did what they could for him. But the end was near and once the cancer has the upper hand there really isn’t much you can do apart from responding to symptoms as best as you can and try to keep the pain at bay. My dad was able to go out less and less, became weaker and weaker and stopped being able to eat and drink much at all. The final straw came when he was too weak to drive the car. I think he decided at that moment that he had simply had enough. He pretty much went to bed and for the first time became truly disorientated and lost. He withdrew into his own private hell and was taken into the hospice 2 days later. The third heartbreaking milestone in my dad’s journey was watching him being taken out of the front door of his home, on a stretcher into the waiting ambulance. I still cannot visit my mum at their home without re-living that day and catching a sob in my throat. 

Just over 24 hours later my dad died. A wind came, a leaf blew outside the window and he was gone. No-one told us about the death rattle. It scared my mum and sister who were with him when he passed, the nurse understood, she told them to hold his hand and that his time was near. I received a call having left but a few minutes earlier. When I got there he had just passed away, he was still so warm and I remember checking more than once with the nurse that he had really died. The family all came to say goodbye and that was it, my dad had died and I wasn’t there in those final few moments. And that was the fourth heartbreaking milestone in my dad’s journey. I had wanted to go as far as I could with him, to the very end but I missed his departure because I didn’t know when he was leaving.  

My overriding memory of this journey with my dad is the utter desperation and frustration I constantly felt at not knowing, not being prepared and not being able to advise and re-assure my dad on the process. Not talking about death really doesn’t help. It allows self-doubt, fear, anxiety, and insecurity to control the situation. We are all going to die, full stop. We need to remove the fear and uncertainty, help people understand what is going to happen and make it normal to talk about death. Let’s help others not to feel like I did, be brave and say it how it is, please. x