I tried to reassure and console her and told her everything was going to be all right. “We will get through this,” I kept saying to her, but inside, I was in pieces. As we were waiting, I realised Mum had incurable cancer. It felt like a great burden had been laid on my heart, and I felt so alone and completely helpless with this devastating news.
My heart was simultaneously filled up with so much love and overwhelming sorrow for her.
Another two hours passed. We were still sitting in the corridor, waiting to be told what ward Mum needed to be admitted to. Then a senior ward manager came round and informed us that they didn’t have any beds available in the hospital. We were advised the nearest neighbouring hospital was the King Edward Hospital, which was about ten miles away. The nurse refused to provide an ambulance to take us there. I was all ready to complain. Mum pleaded with me in her breathless voice. “Mark, I don’t want any fuss, please do not complain.” So we caught a taxi outside the hospital reception. We arrived at the King Edward Hospital, Accident and Emergency Department around 4:30 pm. It was a stifling hot day. To my total astonishment, the Accident and Emergency Department was overflowing with people, noisy and chaotic. It was full of people who were inebriated. I could see immediately that it was a hostile environment.
A seemingly innocuous incident between a man and a woman queuing up at the reception desk suddenly turned into a violent altercation between them. The police were called and the matter was eventually cleared up.
It was so crowded that all the seats were taken in the waiting area. Mum could hardly stand up. She was clinging on to me tightly. I even had to ask a young man to give up his seat for Mum. He did so begrudgingly. I simply could not understand how St John’s Hospital sent us down to the Accident and Emergency Department of a neighbouring hospital, in the full knowledge that Mum had been diagnosed with advanced cancer. She was in total shock. She could hardly walk and needed medical attention and a hospital bed urgently.
We finally saw the triage doctor at 6:30 pm. A full two hours since we arrived. When we entered the cubicle, the triage doctor started to speak sharply and abruptly to Mum. I immediately interrupted in the attempt to correct the doctor’s behaviour. “Please don’t talk to my Mum like that. You can see she is extremely frail.” I said annoyingly.
“Don’t you have any notes?” I enquired. “No,” the doctor replied. Before we left St John’s hospital, I was assured Mum’s notes would be forwarded on. Clearly this had not happened.
I explained that, earlier in the day, we had attended St John’s Hospital where Mum had been diagnosed with Stage 4 colon cancer and she urgently needed a blood transfusion. “She shouldn’t be in the Accident and Emergency Department,” I demanded. This cut no ice with the triage doctor. “You just have to wait your turn,” she retorted. “You can see there are hundreds of people that need to be seen before you. Just take a look, they are waiting in the corridors to be seen.”
Surely, I argued, a cancer patient should be seen immediately. “The only way you can be allocated a bed in this hospital is by two routes. By referral only from your consultant. Alternatively, you come to us through Accident and Emergency,” she commented tersely. “I’m afraid you just have to wait.”
We walked back out to the waiting area. All the seats were made of metal and were extremely uncomfortable. I then asked the receptionist if she had a pillow for Mum to sit on. “No,” she replied unapologetically. “What about a wheelchair?” I asked. “We don’t have any in the Accident and Emergency Department,” the receptionist grumbled. The receptionist was completely uncooperative.
As I walked back to Mum, I put my coat on her seat to make it more comfortable for her.
A further three hours passed before she saw a consultant doctor. As Mum was shunted into a small cubicle, we walked passed an elderly man on a hospital trolley, seemingly waiting to be treated. He looked in agony.
Then we passed a woman who was visibly intoxicated. She was shouting and ripping off her monitoring equipment.
Over the next few hours, Mum saw a series of junior consultants. They were all very pleasant and kind to her. She had no idea what was going on. I had to explain the events of the day to each doctor who came round to examine her.
I was then asked to ring St John’s Hospital and request for them to forward Mum’s notes. I finally managed to contact Mr Carmichael. He apologised for the confusion.
The lack of communication and coordination was evident.
Thankfully, by 10:30 pm, after hours of waiting, Mum was settled in a medical ward in the King Edward Hospital. I was so relieved. She desperately needed a blood transfusion.
Once Mum was settled in the ward, one of the nurses decided to take some blood from her.
First she tried Mum’s right arm. Mum pointed out that she wouldn’t find any blood there, but the nurse wouldn’t listen to her. Mum was right. After ten minutes, the nurse stopped, leaving Mum’s arm covered with bruises. Mum shouted, “You had punched me. You are not going to do that to me again.” The nurse left angrily. Through her body language, I could see she had no compassion for the patients on the ward. I subsequently complained to the Matron, who was more sympathetic. Thankfully, she took over trying to take blood from Mum. She too could not find a vein. Then, suddenly, in a eureka-like moment, Matron yelled, “I’ve found one. That is a nice vein.” Mum rolled her eyes as if to say, did you have to find it?
3
Gathering my thoughts and feelings
I left Mum that evening and headed back home. I arrived home around 11pm.
As I walked in the house, all her possessions were scattered around the living room, exactly how we had left them 12 hours before. Her glasses were lying on the sofa. Her cup was on the table. Her jumper, all folded up neatly, was lying on the back of her chair and her front door keys were lying on the windowsill. I suddenly felt totally numb. Our home for 21 years had always been warm, friendly, and full of love. It now seemed stone cold without her.
It is hard to express how I felt that day. It was an unbelievable shock. The news was devastating. I felt like someone had just grabbed my world and turned it upside down. It was as if the axis had come off the wheels of my life. I knew that from now on, my life would be different.
Words in themselves will never be enough to articulate the deep emotions I went through that day. I felt so powerless.
I remember that night vividly. It was 2 am as I was lying in bed. I simply couldn’t move. I started having a panic attack. First, my heart started beating irregularly. This was shortly followed by sweating and shaking. My whole body began to tremble. I felt nauseous and started to heave. My chest was tightening up. A minute seemed like an hour. I was in total shock and agony. It felt like someone had just punched me in the stomach not just once, but over a hundred times.
I managed to crawl to the bathroom, where I vomited copiously for about an hour. I then sat on the bathroom floor, unable to move. I was just sobbing uncontrollably. I finally managed to stumble back to bed at about 4 am.
My body was reacting to the enormity of the news. There was a profound realisation that Mum, unless a miracle were to happen, was going to die.
I simply don’t know how I managed to get through that night. But somehow I did. As the morning slowly broke, I saw the bright glowing sunrise. I decided to take a shower and cooked myself breakfast.
There was no question about looking after Mum. To me, Mum came first and last. That evening, I made a silent promise to myself that I would look after her. I made a conscious decision to be the rock by her side. But I was consumed with fear, not only for Mum, but fear about my own ability. I kept asking myself, am I capable of looking after Mum? I had no idea what laid in front of me. I was in a complete void. Then something got hold of me. I knew I had to be a different person. That night, I sat down and wrote out a charter. I was determined to follow it every day.
I pinned it up on my bedroom wall. It read:
I recognise and accept that it
is Mum’s illness. It is her body. And ultimately, it is her journey.
I will not grieve while Mum is still alive.
I will cherish and remember all the beautiful and spontaneous moments we have together during her illness.
I will be Mum’s advocate as she proceeds through the healthcare system. I will fight for her with every last breath I have. I am determined that she will not live in distress.
I will preserve Mum’s dignity to the end.
I will focus on Mum’s physical and mental well-being and not entirely on what the medical profession tells us.
I will support Mum’s right to mental and physical independence, by encouraging her to do as much as she can for herself while giving her support when she needs it. I will treat Mum normally and not be too overprotective so that she loses her independence.
I will ensure that at all times Mum will not feel like she is a burden, which from my perspective she never has been.
I will focus on one day at a time and only focus on what needs to be achieved on that day. I remember a saying from President Franklin D. Roosevelt, who insightfully said “Yesterday is history. Tomorrow is a mystery. But today is a gift, that is why it is called the present.” In other words, live in the moment.
Above all else, as Mum was always a loving and caring woman, I was determined to ensure that the cancer was not going to rob her of her identity as a person and steal her independence.
I hoped the charter was going to help me. But little did I know then how powerful and life-affirming it was going to be.
After my body had recovered from the shock of the news, I had some really big decisions to make. I knew the hardest thing to witness in my life was to watch Mum’s inevitable physical deterioration. As well as being a son, I was now Mum’s carer and advocate. I knew she would be totally reliant on me. Never in my entire life had Mum not been there for me. She told me once that life does not come without sacrifice. It was now my turn to give something back to her. I never thought of or looked upon caring for Mum as a burden. It didn’t even cross my mind. I viewed it as a beautiful and precious gift and I was so grateful that I was in a position to care for her.
My faith, which always spoke deeply inside me and brought healing to my heart, was going to be tested. I knew this was the time when I had to put into practice all the wisdom I had accumulated throughout my life.
Nevertheless, seeds of self-doubt kept creeping into my mind. Night after night, I started to agonise and torture myself as to whether I was capable for caring for Mum. No one gives you a road map about caring for someone you love who is dying. Night after night I would ruminate, repeatedly talking to myself. I don’t know where to start. I don’t know if I am good enough. Will I let Mum down? Will I fail? A dear friend said to me, “Mark, you can only do what you can do.”
One night, I was reminiscing and drawing on all the events in my life, when I remembered one day at school back in the 1960s. My school arranged a day out to visit an old people’s home. I talked to many old people about their lives, but one conversation stuck in my memory. It was with an elderly man called Jim. He told me about the atrocities that happened in Bergen-Belsen, the Nazi concentration camp in the Second World War. The camp was liberated in April 1945 by the British 11th Armoured Division.
He told me that no one deserved to witness what he had seen. There were approximately 50,000 prisoners inside, most of them half-starved and seriously ill, in addition to another 13,000 prisoners who died in the weeks after liberation. Corpses were lying around the camp unburied.
Then he told me a story of a simple act of kindness and goodness. He said that out of nowhere, a large amount of lipstick had arrived at the camp. It was an action of pure genius by an American General. Nothing did more for the internees than the lipstick. He described how he saw women with nothing but a blanket over their shoulders, now had scarlet lips. “I saw a woman dead on the table,” he remembered,“and clutched in her hands was a tube of lipstick.”
He then pointed out, looking straight into my eyes: “Don’t you see, Mark, at last they were someone, not merely a number tattooed on their backs.”
Our conversation had a profound effect on me. This seemingly small act of human kindness of giving lipstick to the female internees gave them back their femininity, dignity, and their sense of humanity.
He told me that a drop of human kindness costs nothing. He then told me something I will never forget. A person’s dignity comes from their self-worth.
Drawing on this story and applying it to my situation, I promised myself that above all, I was going to do whatever I could to ensure Mum was cared for in a manner that preserved her dignity. While she was my mother, she was also a human being. I promised myself that through acts of kindness and love, cancer would not rob her of her identity and her femininity.
The next morning, I was on my way to the King Edward Hospital to see Mum, when I saw a homeless man sitting just outside the entrance of the hospital. He was finishing off what looked like a bottle of vodka. I looked into his eyes. They seemed strangely familiar and warm. For some reason, I stopped. He asked, “Do you wish to buy the Big Issue, sir?”
“Okay,” I replied, as I was sorting out my loose change.
We started chatting. He told me that he had lost his wife to cancer in 2007. He subsequently fell apart, and then, due to the financial crash in 2008, he lost his house and had been homeless ever since. He explained he couldn’t handle the real world so he chose to be homeless.
In all honesty, I was half listening to him. Because I was in so much distress, I wasn’t taking too much notice of what he was saying.
He could see, however, the emotional pain on my face. “You are in pain. I can tell,” he thoughtfully commented. I subsequently told him what happened to Mum. We prayed together. Then he gave some profound advice that I would never forget:
“Mark, listen to me. You must be strong. You must be strong with faith. You must be strong with the strength of hope. You must be strong with love that is stronger than death.”
As I left him to go into the hospital, he quoted from the poet Mary Oliver. “To truly live in this world, you need to do three things: to love what is mortal, to hold it against your bones, knowing your whole life depends on it. And when the time comes, let it go. You will know when it is time to let go—it will be in your own time and at your own pace. Follow your heart and you will never go wrong. Your heart will tell you what to do.”
I gave him some money and proceeded to go through the revolving doors into the hospital’s atrium. I stopped just as I was inside and turned around and waved goodbye. He smiled and waved back.
The hospital receptionist could see I was startled. She immediately called over the security guard. And he moved the homeless person on. I protested to the security guard, arguing he was not harming anyone. But it was all to no avail. The heavy-handedness was all too apparent. The ruthlessness of how the guard dealt with this vulnerable man was totally shocking.
Then the homeless man shouted out to me.“Don’t worry about me, Mark, I am used to it. You just look after your mum, she is the most important person in your life right now.”
The lifts were out-of-order at the end of the corridor, so instead, I rushed up six flights of stairs to see Mum. I finally found her on the ward. “How are you? Did you sleep well?” I asked.
“No, I did not,” she replied, seemingly annoyed. “The nurses kept on waking me up through the night. Checking this, checking that. I just want to go home.”
I told her she needed to stay in the hospital for a few more days to get better. As I left Mum in the hospital that evening, on my way out, in the reception area, I dropped to my hands and knees and started vomiting. Again, it was my body reacting to the devastating news. Fortunately, I managed to rush over to a waste paper bin. No one helped or assisted me.
Eventually, after five days in the King Edward Hospital, Mum was discharged. She looked slightly better after the blood transfusion, but
she still looked frail and malnourished.
The oncologist doctor set the operation to remove the tumour for three weeks’ time.
Mum arrived home by taxi. Due to her illness, we had to make some further changes to our living arrangements. Mum continued to sleep downstairs on the sofa, with a pillow and a blanket to keep her warm.
One night, however, while I was sleeping, I heard a loud bang. I rushed downstairs and saw Mum on the floor. She had rolled off the sofa. I grabbed her and managed to lift and carry her back to the sofa. Fortunately, she hadn’t hurt herself. I wrapped the blanket around her. She slept well that night.
At this stage, Mum was very weak. I weighed her and she was under six stone.
Mum was rapidly deteriorating. I had never seen her so weak and frail. To me, she looked like she was shortly going to pass away.
Being fiercely independent, Mum was adamant not to have carers in the house. She did not want strangers to look after her. She just wanted me.
Given her frailty, she was still lucid and made a compelling case that we only needed to wait three weeks until the operation and therefore, to bring carers in the house, would be pointless. I reluctantly agreed.
With our worlds turned up-side-down, our lives were in complete turmoil. We had no structure to our day. I quickly decided to put a daily routine together which focused on making sure Mum was both eating and constantly hydrated throughout the day. I felt helpless but that was all I could do.
In the mornings, I would cook porridge for breakfast. In terms of personal hygiene, I would bring Mum a bowl of warm water for bathing. She managed to wash and dress without my assistance.
On occasions, I would wash her back. I could see her bones sheering through her skin. As I washed her, tears would be running down my face, but I was careful for her not to see I was crying. To witness, in front of my eyes, the sheer and utter vulnerability of another human being was both shocking and deeply profound. It was an immense privilege and responsibility caring for someone so vulnerable.
Peaceful Breeze Page 3