I was writing about my fathers terminal condition post diagnosis of Mesothelioma Cancer, writing about how facing my father’s terminal condition felt, how we as a family were pulling together.
Then the day came for him to pass and I stopped writing. I became breathless in the complications that surrounded him passing and a need to re-find my centre.
I stopped being in a creative process that expressed my feelings and thoughts around his death, I was being invaded by values that were not necessarily aligned to mine. I sought to reaffirm my sovereignty and the journey of my spiritual expression. A year passed and the anniversary for his death came round, a few of the milestones still remained standing, I started to reflect on the year and the end of his life.
There were parts of the story we were warned about by the Doctors at the hospice and parts that came as a shock and traumatic. I had worked as a carer with end of life for a few years, whilst I set up my business post university. I therefore thought I had experience in dealing with death, however cancer is complex, it moves in ways that are hard to keep track of, the drugs create mysterious elements that are often intangible or unpredictable.
My fathers diagnosis of Mesothelioma Cancer came a year before his death, it was found through pneumonia. This was a great respite as normally this kind of cancer is found when it first appears giving two weeks to two months of life left. Mesothelioma Cancer is related to exposure to asbestos, he had been exposed in his early twenties, he had taken a night shift for extra work so that he could go traveling, the environment was a factory that made asbestos piping.
Through the diagnosis we didn’t know what to expect, there was panic, then confusion, then an intense need to spend time with my Father. So every moment became magnified. My father was not a talker on an emotional or spiritual level but he was present, a quiet and generally peaceful presence.
The story started a year after diagnosis and the normal paths and phases of chemo and healthcare. My mother phoned me at about 7 am in the morning of the 3 January 2017, explaining that my father was very confused and that she thought we should take him to Accident and Emergency. I live 15-20 minutes away so came straight away. The morning was freezing, my mother had been defrosting the windscreen on my father’s car, I was throwing screen wash on my car from the litre bottle, then driving to their home.
I arrived, my mother doesn’t drive, so I got into their car and we drove to A and E. When we arrived we took him in to the hospital, I realised I hadn’t picked up the keys to his car which were on their kitchen table. It had a push button start, so now the car was stuck at one of two emergency parking spaces outside the very busy City Hospital emergency entrance. We registered him and got him to see the Dr, whilst I got a taxi back to the house to collect the key, (without him knowing, he would have gone crazy!) I got a lift from a neighbour back and resumed activities. That night we realised he had drunk a whole bottle of morph**e, the pain was so bad, he kept reaching for it and taking a gulp without realising he had made it through the bottle. He was high as a kite and flirting with the nurses! We had to leave him over night in a mixed ward and rather ashamedly backed away from the hospital to let the nurses and doctors take over. They tried to stabalise him and we were relieved they moved him to a male ward to try and settle his pain management with different pain killers!
Two weeks later he was still in the same male ward, the pain was attacking, he had five minutes warning in which to get an injection or he would writhe around the floor in agony. This would happen up to three times a day. It became time to move him to a hospice as he needed a Dr on hand to prescribe him pain killers or inject, by now his digestion system was struggling to cope with the side effects from the medication so he had even more pain through complications in bowel movements that were extreme.
He found joy in chocolate Cornetto ice cream, so I used to bring him one or two every day. I gave him an ice cream as the ambulance came to take him to Sue Ryder Hospice, the staff recommended him and patiently waited for him to enjoy every bite. I drove behind in the car with my mother to the home. Sue Ryder Hospice is a very special environment much loved by the community but it was a very hard day. There is a difference between a hospital in which you expect to come home and a hospice in which you know you are at a serious place with the end of your life. The beauty of being there strikes you in it’s privilege and the relief of being away from the hospital gives you a sense of peace, feeling the real sense of warmth from the nurses and the way they settle and welcome you, but wow it was hard. It was the first moment when you know its time to begin the process of walking to the gates of death. The fear of the unknown experience, of what happens now? How will this be? when will this be? are we ready? The answer is of course you don’t know, when is terminal terminal? All you can do is hang on to the moments, enjoy being present with each other, find ways to make the situation more comfortable. I went out and bought him a wash bag, with all the smart male personal hygiene elements contained. In the back of my mind I was thinking I could give him 100 presents for all the Christmases he will miss, what does it matter? I got him lounge wear, checked like Rupert the Bear, we used to dress him up in a cosy scarf and checked brushed cotton trousers. We started to settle into routines, around pain management and food. We realised we could heat the car and rush him off to the nearest hotel restaurant, we had two hours in between pain killers. So everything was specifically timed with ordering and explaining our aims to the chef.
He developed a taste for tartare sauce, his taste buds were a bit warped post chemo, so his interest in food was hard to predict. Eventually we found an Italian restaurant run by a sweet and understanding family man, Jean Lucas whom cooked us exactly what we wanted. This was 15 mins drive from the hospice with a disabled parking space directly outside and a rail to get up up the steps, we would all support him being rushed in for an hour of fun in a restaurant, this went on for 6 weeks!
Only once did we manage to get him home, he was at home for an hour. Then it was time to take him back to the hospice, because of pain management. We warmed the car, put his coat on. I turned my back for maybe 3 mins and he was on the floor, he had fallen. He cursed himself at how stupid he was, I saw him vulnerable for the first real time, it broke my heart. I was trying to help him get up but it was so hard, eventually my care work memory kicked in. We gave him a break, by wrapping a duvet round him so he could rest, then I asked him to turn to his side and get up on all fours, he crawled towards the stairs and pulled himself up using the banister. Phew, but he was shaking all over. I knew it was bad, a simple fall was enough to completely ruin him he was so fragile. We again got him to the car and back to Sue Ryder. His temperature rose, they were worried he had an infection and wanted to take him to hospital. He was admitted and put on a mixed ward with a mixture of people all very complicated and loud and aggressive. He was given antibiotics. There was a feeling that he was in a dangerous place with so many people, with so many complex problems and it was so hard for him to sleep. I phoned a very kind neighbour whom was a nurse and begged her to help us get him out of there, back to the hospice. We forced our way through the administration and she drove him in her car back to the home. I arrived to him at the hospice, he looked so pleased to see me and grateful for saving him from the fate of another day at the hospital, it created a special understanding between us, the staff at the hospice welcomed him back with open arms.
The feeling of the terminal days were mixed with a hope of enjoying spring, we were getting to the end of February. The idea of seeing the bright yellow daffodils bring the joy of blossom and bloom, gave us hope. The Dr. had a try at helping him with his pain and had booked him in for an operation at a hospital in Portsmouth, to block his nerves around the cancer, the operation was booked for 28 February. The operation also gave us hope, especially that he could come home. The idea of him having home comforts seemed much better than dying with so much complication around pain and pain management. However three days before the operation, I received a phone call from him at 9pm, he was very confused and a bit scared. I was out at a meeting and in a very complex position in getting to him. I had already backed my car in to a post from the stress of living through the terminal situation. I felt helpless in being able to get to him as there were people dominating my activities and I felt lost emotionally.
Eventually the next day my brother got to him in the morning, my father had settled a bit, my brother went to get a pizza for my mother and father to share. On his return my fathers lungs had begun to fill with fluid. The Doctor then asked us to all come in, she took us aside and explained this was the first sign of heart failure, the journey to the end was beginning. I asked if it would be sudden? She said maybe, I said how will it be? She couldn’t answer, but it was imminent, tears can’t explain that feeling of knowing the time has come. My mother and I were asked to stay at the hospice family apartment so we could be with him. They said the next 24 hours would be crucial. We stayed there, in the morning he seemed bright and stable, it was a grey frosty sky, he looked out and said how nice the sun looked through the grey clouds. My mother and I looked out at the grey mono tone morning, we jested fun at him, but his journey was beginning. My brothers arrived, we spent the day together talking helping with the pain, it was extreme and seemed to be causing him confusion as to how or what was going on. He was still able to walk and talk, he was just very uncomfortable. He wanted to reconsider going home, but the Dr had to be brave and told him the best he could do was to be with his family. What matters when you are about to leave everything?
What happened next took me a long time to recover from. It wasn’t until about 5 pm that the fluid started to revisit his lungs and build up, it seemed to bubble through this breath, he became breathless and seemed to be drowning. Very distressing to watch, all we could do is be there with him, the nurses put a driver on to try to help. His whole body started to ache in pain, this carried on building up through the evening in to the night. We waited until the pain became unbearable and my father was once again writhing around in his bed from it, we were scared for him. The nurses said they could ease it, but they would have to put another butterfly in for the injection. The nurse looked at me, we knew that with this tranquilliser he would pass out. We were apprehensive, we didn’t fully understand that there would be no coming back. I naively thought that the tranquilliser would wear off for one final good bye. I hurried the nurse to help, my mother held the butterfly ready for the injection. I asked my father are you sure you are ready, he said yes yes, the injection was pumped in and he shot back in to his pillow in to a deep sleep. Goodbye Daddy….it was time to let go. My mother and I stayed with him through the night, in time the tranquilliser did start wearing off, his arms started to move around and the gurgling became stronger. We didn’t know what to do. The Dr. had gone home and the nurses couldn’t administer any more prescriptions with out consent from the Dr. Eventually, the nurses decided to turn him in case that helped. My mother and I took the opportunity to go to the bathroom. Within minutes, at 2 am in the morning we were called back, he was having his final breath.
His breathing changed, to deep breaths that were natural and long lasting. He was in a place of transition and departure from his body. Around his head a huge bright light shone, I could see it was time for his passing. We said our goodbyes all in our individual ways, all very different but very direct. I then meditated on his journey, praying for him and attuning to his spiritual presence giving him healing energy so his soul could remain strong. My brothers and my mother dealt with it in their ways. He took one last breath and released his life. We sat with him for another hour, with his warm body, feeling the gateways had opened, time had stood still and our sense of reality changed forever, we were in the presence of the divine.
The silence and emptiness in the hours that follow is hard to distinguish, it was so hard to watch him die like that, yet it was his journey. What would we have done without the hospice? How can we care more for those on the journey. Should more attention go to end of life care and your own personal exit strategy? Should holistic care be more widely supported to help with spiritual physical and psychological needs? Without knowing the whole story of death one cannot answer these questions. As a hypnotherapist and spiritual healer, I get asked a lot to help people with their passing, making sure the person that passes is delivered to God. I did this for my father, I visited my hypnotherapist and made sure he was in the right place, through hypnotherapy I conversed with him, around moving through time frames and helped him embrace the light and love of God and Heaven. I get asked to implement all sorts of plans for end of life, through hypnotherapy, intuitive readings, clearing corrupting forces, enabling healing and insuring deliverance to God. Everyone carries a different story and although the support in spiritual deliverance often comes primarily from the Vicar or Priest, sometimes it is good to insure these elements are taken care of and to feel the personal connection and communication with the one that has passed through a deep level of meditation or hypnotherapy.
The hospice helps with all these elements, they are an important construct to our community as each and every person that is reading this has an unknown terminal time frame, each one of us will die and we will need to be ‘taken care of’ in those moments of intense vulnerability, be prepared and please keep supporting your local hospice. A lot of people do not understand the complications around needs in end of life care, so can be casual about the management or support of those dying or family members facing a relation with a fatal condition. A year after my fathers death the Nettlebed Sue Ryder Hospice has announced it’s sale, this is very disappointing. Are we moving still moving forwards in end of life development plans?