I simply could not believe what I was reading. How on earth could a junior doctor make such a clinical judgement, especially based on only one round of tests? The assessment was lamentable, poor, and weak. If Mum were by herself with no advocate by her side, based on this flimsy evaluation, she would have been shunted quickly away, out of sight, in a care home.
I was in the process of making a formal complaint, but Mum, once again, did not want any fuss. So I left the matter. I focused all my energies once again on caring for Mum.
Over the coming six weeks, I could see Mum was deteriorating further. She looked more anaemic, frailer, and more anorexic. She still looked extremely malnourished. By the beginning of August 2014, she weighed only five and a half stone. I felt totally helpless and powerless.
Over and over again, I asked myself, as a son, how I could have allowed her to get like this. Night after night, I went to sleep guilt-ridden for letting this happen to her under my care. While I realised it was, in fact, the tumour inside her that was causing her malnourishment, I still felt I was to blame. At the time, I felt I let Mum down. And to some extent, I still do even today.
Mum and I continued with our daily routine. I read my charter on a daily basis—it always gave me focus and solace. During the six weeks leading up to the operation, Mum became increasingly anxious, scared, and agitated. Every time I went to the bathroom, she would shout out to me to hurry back. Each time I came back home from shopping, she fretted that I had taken too long.
On one occasion, I was upstairs in my bedroom. Mum went to use the toilet downstairs. Then, a minute after, I heard her screaming. I ran down the stairs. She physically couldn’t get up from the raised toilet seat. I rushed upstairs to the main bathroom and grabbed a large bath towel.
Then I managed to wrap the towel around her to ensure her dignity was preserved. I started to lift her up slowly and gently with her arms wrapped around my upper body. I carried her into the living room whereby I eased her down into her chair. She was utterly distraught. It took me all evening to calm her down.
Fortunately, I was in the house at the time to help her. That night, I kept on thinking about the incident. What if the incident occurred when I was out shopping? I agonised every time I left the house. Every day, a whole range of emotions and fears would pass through my head.
The weeks passed in a flash.
6
Main operation
Mum attended a routine consultation with a junior anaesthetist, precisely a week before her surgery to remove her tumour.
At this point, Mum’s mobility was extremely poor. Her weight loss was very visible, dramatic, and extremely disturbing. Losing more weight, she was now close to weighing five stone. It was clear to me she was now suffering from the acute form of cachexia (which is prevalent in people with advanced colon cancer). Cachexia is a body syndrome that causes anorexia, and it cannot be reversed nutritionally.
In Mum’s case, she had lost both her lean and skeleton muscle mass as a direct result of the solid, malignant tumour inside her.
During the consultation, the junior anaesthetist was blunt and direct. “We have no choice but to operate, Mrs Carrington,” he explained. “Please be under no illusion, this is a major operation you are facing. If we do not remove the tumour, you will die very quickly, probably in a few weeks. If we, however, operate, because of your lack of muscle tissue and tone, you will be at high risk, and it is highly likely that you will not come through the surgery.”
Spontaneously, without any warning, the junior anaesthetist leaned across and touched Mum’s hand and whispered, “Your body will need to fight like never before for you to survive the surgery.”
Mum looked numbed. She was put in an impossible situation. The junior anaesthetist agreed that Mum needed a further blood transfusion, but insisted that she could only stay in the hospital for one night. Mum protested, as she wanted to go home. But it was for the best. I left Mum to settle on the ward before I headed home.
That night, I simply couldn’t sleep. I kept ruminating and thinking what a dreadful situation for anyone to be in, let alone my mother. She was unlikely to survive the operation in the physical state she was in. The balance of risk was around 95 percent against her surviving, primarily due to her extreme weight loss and lack of muscle. I was determined to tilt that balance so she had, at least, a fighting chance of survival.
Once again, I looked at my charter. I repeated to myself, “I will fight for Mum with every breath I have. She has no one else on her side.”
The next day, at 9 am, I decided to see the senior consultant, Mr Michael Bucannon, at the King Edward Hospital. While I didn’t have an appointment to see him, I found out the location of his office. I spoke to his secretary, who thankfully, allowed me to see him for five minutes during the day. My prayer was answered. I knew that was all I needed.
When I met him, I made a cogent, coherent, and compelling case that Mum not only needed to be kept in hospital, but to be also intravenously fed with nutrition to build her up ready for the surgery.
Mr Bucannon listened intently. Thankfully, my argument prevailed and he agreed with me. I subsequently had to break the news to Mum that she was to stay in the hospital for the lead up to her operation. She so desperately wanted to come home. At the time, I didn’t tell her that it was my idea.
On that same day, the nurses hooked Mum up to a feeding drip. She was fed intravenously through the nose for twenty-four hours a day, right up to the day of her operation. The plan worked. She put on nine pounds in five days. I was so relieved. She was now at least given a fighting chance, no matter how slim. I accepted that if she died on the operating table, I knew in my heart I tried my best for her.
Mum was annoyed and would repeatedly say to me, “I don’t want to be here, I don’t want the drip through my nose. I don’t want any fuss made over me.” I told her that we were never going to stop ‘fussing’ over her whether she liked it or not.
Over the course of the week, Mum started to have a glow in her face. On the day of the surgery, I arrived on the ward to see her at 7 am. She was calm and relaxed but tearful. I was only allowed to spend about ten minutes with her. As she was being wheeled to the theatre, I managed to wave her goodbye. She smiled and waved back. As I left the ward, I wondered to myself if that was going to be the last time I would see Mum alive. I still needed to feel I was close to her during her operation. So, once again, I headed to the hospital’s canteen.
As I queued up to purchase a cappuccino by the cashier’s counter, I suddenly turned around. I simply could not believe my eyes. There standing next to me, was Mr Bucannon. He seemed relaxed.
“Don’t worry, your mum will be fine,” he testified proudly. “She is in safe hands. I am going to be in charge of your mum’s operation. We are going to have two anaesthetists present in the theatre, just in case something goes wrong. Do you know she has put on nine pounds since being intravenously fed?” he announced triumphantly.
I stayed in the hospital canteen all day. I must have drunk another fifteen cups of tea. I was a complete bag of nerves. I prayed all day. Prayer was all I had. The senior nurse promised me that she would ring me on my mobile phone at the end of the day. It was like Groundhog Day. No one rang.
By 8 pm, I could wait no longer. I was at my wit’s end. I subsequently phoned the ward nurse. She calmly explained that the operation lasted nine hours and was mostly a success. The tumour was longer than the doctors expected. It was not only 12 centimetres long—more than twice the size when it was measured in June when they took the MRI scan—but it also weighed one and half pounds. I could not believe how a tumour could be so long and weigh so much. She told me that Mum had been transferred to the high-dependency unit.
The next day, I visited Mum around 3:30 pm. But, curiously, she wasn’t there. I asked the nurse on the ward as to her whereabouts. She informed me that she had been taken down for an X-ray. I was then asked to wait in a small waiting room. Some three hours passed. I k
ept on thinking that it seemed a long time to take an X-ray.
Suddenly, Mr Bucannon walked through the door. I immediately knew something was wrong.
“Mark… sit down,”Mr Bucannon asserted. My heart sank again.
“Your mum has suffered a major setback,” he calmly informed me. “We discovered that the stent we left in her body from yesterday’s operation had leaked. We needed to carry out further surgery urgently.”
He explained that he would be investigating the matter as it was extremely unusual and was probably caused by a manufacturer’s malfunction. My reaction was of complete shock.
But he reassured me that Mum was in a stable condition. That was the only thing that mattered to me. I had to wait a further 24 hours to see if she would come through the second operation. Thankfully, she did. I decided not to see Mum that evening as I was conscious that she needed to rest. So I headed home.
The next morning, I headed back up to the hospital.
To the surprise of the doctors, Mum was sitting up. I just arrived as the nurses were giving her paracetamol.
Around dinner time, one of the nurses gave Mum a small bowl of soup. “It tastes dreadful,” Mum commented. “It is so salty.”
“You need to eat it,” the nurse replied sternly.
“If it is so good, why don’t you have it yourself?” Mum retorted.
The nurse looked stunned that a patient would talk back to her. To me, it was another demonstration that Mum still had fight and spirit in her. I smiled.
Then Mum wanted to scratch her leg. She was wearing very tight bed socks to stop any blood clotting, but she had this insatiable itch, so I pulled off her socks.
Mum was also eager to show me her scars. In fact, she was quite proud of them. “Look,” she said boastfully. “They stapled in the stitches.”
She insisted on showing them to me. As I was squeamish, I just had one quick glance.
“Before the operation, the doctor drew on me where the insertions were going to be made. I had all drawings on me,” she said majestically.
She was moved out of the high-dependency unit after only two days. I was so relieved that she came through the operation. The doctors came around and told Mum the surgery was a success. The main tumour had been removed.
A few days later, however, the doctors thought Mum had pleural effusion—fluid on the lungs that would need to be drained by another operation. It appeared some fluid had collected between the sheets of tissue that cover the outside of her right lung and the lining of her chest cavity.
The doctors were deliberating on whether or not to operate. Thankfully, the decision was to monitor the situation rather than to operate. Personally, I didn’t think Mum could have survived three major operations one after another within a few days.
Mum stayed in the hospital for five and a half weeks. During this time, I went to visit her every single day, both in the morning and in the afternoon. I worried about how she had slept or even if something dreadful had happened during the previous night. So I would always go up in the mornings to see her for about ten minutes. The Matron on the ward didn’t seem to mind as long as I didn’t stay too long.
I would then return in the afternoon and stay for a few hours. Mum worried that it was boring for me. I didn’t mind. As long as Mum was okay, that was good enough for me. In fact, most of the time, I would just sit in a chair next to her. We didn’t need to speak. It was just nice to be by her side. She could feel my presence.
One afternoon, I looked across from Mum’s bed. Opposite was an elderly woman who was crying out. She looked so vulnerable and debilitated.
I could see she had slumped in her bed. It appeared that she had slipped so far down that it was only a matter of time before she was going to fall onto the floor. I called for the nurses but there were none around. So I decided to walk over and lift her into the bed. She was extremely thankful for making her comfortable. She had a tearful expression on her face.
I noticed previously that, day after day, no one came to see her. She had no visitors. On this particular day, she had been left untended by the nurses for hours. I could not believe the level of her neglect. Later that day, I finally found the Matron and told her of my concerns.
Five days later, we discovered that the woman had suffered a stroke. The nurses had moved her to another ward. We never saw her again.
After my visits to Mum every morning and afternoon, it was clear that this particular ward was operating at or beyond its capacity. In my opinion, safety was being compromised because of this. It was plain to see that they were simply stretched and understaffed.
I was in the hospital all the time, arguing Mum’s case, but I knew that many elderly people do not have family members by their side, just like the elderly woman opposite Mum’s bed. She now had a real uphill struggle in life. Mum’s words resonated with me: “By the grace of God go I.” I’m always grateful for what I have in life because I know it can be taken away in an instant.
It was interesting to contrast the behaviour of the nurses in the different hospital wards Mum stayed in, even in the same hospital. In this particular ward, the nurses were stern and uncaring and Mum felt invisible. But on other wards, Mum could not have received better treatment—they treated her as if she was the only patient there.
Every week that Mum was laying in her bed, I could see her mentally deteriorating.
The warning signs of Mum developing delirium were all too apparent. For anyone who does not know what delirium is, it is an unforeseen and immediate disruption of a person’s consciousness and cognition highlighted by vivid hallucinations, delusions, and an inability to focus.
Over the coming weeks, Mum became increasingly lethargic and inattentive. She was also losing weight again. Day after day, she would be resting in bed staring at a white wall. Her mind was completely inactive and her cognitive skills were decreasing. Worryingly, she started to hallucinate and on occasions was delusional. “I can see a black bird,” she insisted as she pointed to the other bed across the ward. At this stage, I simply pacified her.
Then things turned for the worst. One Thursday, I arrived at the ward around 3:30pm.
Mum was sitting on her bed. She sat me down next to her. She looked at me straight in the eyes.
“Mark, listen to me, this is very serious,” she said hesitantly. “I have swallowed two bugs. They are inside me crawling around. The doctors told me I don’t have much time to live.”
She was totally convinced. Her experience was totally real to her. As she spoke, her whole body was shaking. She was breathless. And her eyes were red. I could see she had been crying. I had never seen her so scared.
“The woman in the other bed has eaten one too,” Mum added.
I knew straight away not to contradict her. I simply went with the flow of what she was saying. Listening intently, I rubbed her arm, trying to reassure her and calming her fears.
“I’m sure it will be fine,” I replied tenderly with a tear running down my right eye.
I reported the incidents to the ward doctor.
“We can prescribe her antipsychotic medication to calm her down,” he advised.
That was the last thing I wanted him to do, as I knew the drugs might have made her worse and had serious side effects.
She was increasingly becoming more fearful. And with each day passing, losing her confidence. Somehow, I knew I had to get her out of the hospital and back home into her own environment. I could then look after her and start to stimulate her mentally.
But for now, the most important news was that the cancerous tissue was apparently gone.
Two weeks after the operation, however, the mood of the doctors changed. One morning, a senior surgeon examined Mum.
“Mrs Carrington, while we removed the tumour and that part of the operation was successful, there were some cells we couldn’t remove. Do you understand what I am saying to you?”
“Yes,” replied Mum apologetically. “Thank you for all your help.�
�
She clutched his hand and wouldn’t let it go.
It was Wednesday, 10th September 2014. I arrived at the hospital to see Mum at the usual time of 9 am. The junior doctor and the occupational therapist came around to see Mum. They drew the flimsy blue curtains around us.
“Marian, you haven’t seen me before. I’m Dr Harding, a junior consultant. I have just recently joined the hospital.”
Then Dr Harding held Mum’s hands.
“Your hands are cold,” Mum immediately commented.
“Marian, we feel you can go home now. How do you feel about that?” Dr Harding asked.
“Great,” Mum said enthusiastically as her tiny eyes lit up.
I knew she desperately wanted to come home.
“Well, we’ll sort out the discharge papers, and you can go home on Friday.”
I looked on in total and complete astonishment.
“Hold on for a moment,” I interrupted. “I have no care package in place. I have no adaptions. Mum’s bed is two floors up the stairs. She can’t climb the stairs.”
“Don’t worry about that,” Dr Harding replied dismissively. “We can arrange for paramedics to carry your mum up and down the stairs each day.”
I simply couldn’t believe what she was saying. There was absolutely no way Mum could be discharged that Friday. In any event, I was previously advised the discharge process would be carefully planned and coordinated. I was told Mum would have a maximum care package in place, with carers coming in three times a day, morning, lunch, and evening.
“Your mum is medically fit,” Dr Harding retorted angrily. “If your mum stays in longer, she is at risk of infection.”
Peaceful Breeze Page 5