I laughed because I could see the fight and spirit within Mum. She still had that determination, tenacity, and resilience.
The physiotherapist left quickly. He never returned. Mum could not believe his attitude.
“Because I’m old and hard of hearing, it doesn’t mean my mind has gone,” she added. “It was as if as though he was talking down and belittling me just because I’m old. I’m not going to be treated like that.”She was furious.
8
Looking forward to Christmas 2014
With the physiotherapist refusing to visit Mum again, I knew it was crucial to improve her muscle and bone strength.
About three weeks before Christmas, I bought some exercise resistance bands. Fortunately, a few years previously, I had employed a personal trainer. He was fantastic as he showed me how to exercise safely, which allowed me to deploy those same exercises with Mum.
Mum and I soon established an exercise routine. In the mornings, around 10:30 am, I would sit on Mum’s bed and show her how to use the lightweight resistance bands.
“I’ve done it. Now you can do it,” I would say. And to her credit, she did. She was enthusiastic. When she achieved eight reps, I would encourage her further. “Just another two reps,” I would say.
I started to set out an exercise programme for her, recording the number of reps she would do each time. We would exercise every other day, focusing on the upper body in the first session and the lower body the next. I taught her to do squats, heel raises, toe raises, triceps curls, upper back exercises, knee extension exercises, and overhead chest presses, all with the resistance bands.
In addition to these activities, of her free will, Mum would walk around the living room and hallway with her walking stick for about five minutes. I even bought her a digital stepometer, and we counted how many steps she walked each day. Jokingly, Mum commented she was training for a marathon race. We both laughed.
As well as establishing a physical exercise regime, I had to also ensure Mum was psychologically healthy. I remember reading many years ago, that both nostalgia and reminiscing reduced anxiety. I would, therefore, encourage Mum to talk about her memories of the past, especially when she was a child during the wartime Blitz.
I kept Mum mentally active so her mind was sharp and alert. Every other day, we would sit down next to each other on the sofa. We would play some memory game applications on my iPad. We had a lot of fun. In particular, I chose games that would stimulate her frontal cortex in order to improve her short-term memory, the speed in which she processed information and her problem solving skills. In one specific game that Mum played, she had to remember different sets of animal picture sequences. By playing this game over a two-month period, Mum reached level seventeen out of a total of twenty-four levels. She was very pleased with herself. I played the game alongside her, and I could only reach level ten. I was pleased that her mind was sharp and her short-term memory was good.
In many ways, Mum’s quality of life was improving.
Christmas shopping
Over the previous months, I would take Mum out for short walks. Because of Mum’s frailty, she only managed to walk to the top of our road and back, about a five-minute walk.
Mum was determined to do the Christmas shopping, as she had done in all previous years. So in the middle of December 2014, we decided to go out to the shops in the high street. I was by her side. She hung on to me. She walked a whole mile to the shops.
We arrived at the supermarket, which she hadn’t seen for over seven months. As we entered the door to the supermarket, Mum was looking down at the pavement. Then she looked up. Her little eyes lit up and opened widely. Her whole face glowed. Her smile was so large. It covered up all the wrinkles on her face.
She was like a small child walking into Disneyland for the very first time. To see the pure, innocent, and magical joy on her face was profoundly beautiful and humbling to witness and something I will never forget.
We walked up and down each of the aisles within the supermarket. Mum loved every second that passed. She looked out for any of her friends, whom not so long ago she would have met shopping. Sadly, she didn’t see any of them.
After spending thirty minutes in there, grasping on to each other, with Mum unsteady on her feet, she walked out of there with her eyes still open with pure wonder. We then managed to walk home. That day she amazed me. Through sheer determination, she walked two miles.
That night, I tucked her into bed. She was overwhelmed with joyful emotion.
Christmas Dinner
It was Christmas Day.
Mum was determined that Christmas Day would be no different from our beautiful Christmases we had had in years before. I think Mum knew this was going to be our final Christmas Day spent together.
As I was about to cook the Christmas dinner, Mum shuffled into the kitchen. “I’m going to cook the meal,” she said with a soft, loving tone. “Just go and relax.”
I hovered outside the kitchen, watching Mum cook the meal just in case she got into any difficulties. There was no need. She knew precisely what she was doing.
As the Christmas dinner was cooking, Mum also laid out the table with cutlery, napkins, glasses, and so on. I could only watch in wonder at her sheer resilience and determination.
Mum’s sister, Jenny, bought her a fleeced, turquoise pyjamas as a Christmas present. She wore them that night. She looked so warm and comfortable in them.
“They are lovely,” she kept saying to me. “I don’t want to spoil them as they are so nice.”
Christmas Day was over in a blink of an eye. She had only vomited once. We had an excellent Christmas meal and a peaceful day. That was all I could have hoped for.
9
Entering the final journey, 2015
In January 2015, Mum had a further CT scan.
In February 2015, we saw Dr Barlow, the clinical oncologist, at the King Edward Hospital. The appointment was to discuss the results of January’s scan. On the day, we waited over two hours in the reception area before we were shown into Dr Barlow’s room.
Dr Barlow turned round in her chair.“I have to apologise, but your scan results haven’t arrived yet. Don’t worry, I have some other images from before, and they look fine. You are doing well,” she said to Mum in a cheerful and relaxed way. “I will chase up the results. I suggest you have a blood test now, and I will call your son on his mobile phone about the results. Come back in six months’ time for your next appointment.”
After only five minutes, we were led out of the room.
I felt a sense of relief.
“This is great news,” I declared to Mum joyfully.
Mum was quiet. She was not so sure. She knew Dr Barlow had got it wrong. She was right. It was the calm before the storm.
Thirty minutes later, as Mum was having her blood test, my mobile phone rang. It was Dr Barlow.
“I’m afraid I have some bad news for you,” she advised. “I regret to say the results of the scan have confirmed our worst fears. There are two spots near the lymph nodes. You need to make an appointment in one month.”
“Hold on for a moment,” I replied, shocked. “Just 30 minutes ago you stated everything was okay.”
“I know. I’m so sorry,” she admitted hesitantly. Then she put the phone down. The conversation lasted only a few seconds.
The news penetrated my emotions’ defences. I then had to walk back into the medical room where Mum was sitting, having her blood test and of course, tell her the news. It was a dreadful experience. I was stricken. I stood frozen in the doorway.
Mum paused and took a deep breath.
“Tell me straight,” Mum said taking a further deep breath. “Tell me everything. I knew there was something wrong.”
I felt a lump in my throat. I looked at her in silence. The words I wanted to say were stuck. I could not speak.
“I knew it,” Mum said in a soft, tender, but overwhelming sad voice.
After a deep breath, I s
imply repeated what Dr Barlow told me. I did not hold anything back.
We came back home. We were now in complete limbo. We had to wait a further four weeks to find out the true extent of the spots they found.
Being told
In March 2015, we went back to the King Edward Hospital to see Dr Barlow. But instead, we saw a junior registrar.
We were shown into a small room. The registrar was young. As we entered the room, the registrar was nervously twisting her fingers. Rather than looking Mum in the eyes, the registrar looked constantly down to the floor as she was speaking to Mum, interspersed with slight glimpses in Mum’s eyes.
“Do you want a blunt conversation?” she enquired.
“Yes,” Mum replied bravely and without any hesitation in her voice.
“You have some microscopic cells that have invaded the tissues around your right colon and lymph nodes. These cells will become a mass. Without palliative chemotherapy treatment, you are looking at months. With chemotherapy treatment, which has only one in four chance of helping you, you may last possibly a year. The side effects of the chemotherapy, however, in your case would be severe. At the moment, I believe you are still far too weak to have chemotherapy.”
From the hospital’s point of view, Mum’s best interest was to let nature take its own course. Looking at Mum’s frailty, it was the most humanitarian and caring decision to make. One that I agreed with.
At the end of the conversation, Mum said respectfully and calmly to the registrar, “Thank you so very much. Thank you for all your help.” Mum said it in such a way that it seemed like she were saying it to a cashier at a supermarket helping her to pack her shopping bags.
The registrar looked startled at how well Mum took the news. “Do you understand what I have just said?” the registrar repeated to Mum.
With immense clarity, Mum nodded. While Mum didn’t know what palliative care meant, she fully understood what the registrar was saying to her.
As we arrived back home that day, Mum conceded she had no hope. I told her that we always have hope. I knew, however, Mum’s decline was inevitable. As her son, I was now entering the most stressful period of my entire life.
Palliative care support was virtually non-existent. A Macmillan nurse was assigned to Mum. He initially started to come around to see Mum once a week, but then he suddenly stopped. I was unable to contact him. He was always on holiday. I complained but all to no avail.
Disturbingly, Mum was not receiving any meaningful treatment or advice on pain control from the Macmillan nurse. He explained the only effective pain control was to stop the pain in the first place. This could only be achieved if Mum was heavily sedated throughout the day, he advised.
Without any palliative care, I had to constantly ring Mum’s doctor. She always had time for Mum. She was wonderful.
During her visits, she would determine the most effective pain control for Mum. Although, there was very little she could do given the advanced state of Mum’s cancer. For the majority of the time, Mum would take up to eight paracetamols a day.
On one particular home visit by the doctor, the issue of cardiopulmonary resuscitation was approached. Because of Mum being hard of hearing, she did not understand what the doctor was saying to her. The doctor subsequently asked me to explain to Mum. It was a difficult and sensitive conversation.
I took a deep breath and, in a calm voice, I explained, “Mum if you have a heart attack, the doctors in the hospital will just allow things to take their natural course.” She looked at me and nodded. She understood. In front of the doctor, Mum agreed, if the event occurred, she would not be resuscitated. I believe that was the right decision, as I knew that only five percent of resuscitations on the elderly were successful. Mum just wanted to be allowed to die naturally.
Three weeks after seeing the doctor, Mum began to feel increasingly nauseous. It came on without warning. Each night, I would put Mum to bed and leave my bedroom door open listening out for any noise, hoping she was sleeping okay. She would have a glass of water on a table and a bucket next to her bed.
Every night, Mum would feel sick. As soon as I heard a noise, I would immediately rush down the stairs.
As I ran into the living room, Mum would be vomiting uncontrollably into the bucket.
I would ensure she was sitting upright with her head forward facing into the bucket. I would comfort and reassure her, saying, “It’s okay. It’s alright. I’m here.” As Mum was vomiting, her right hand would shake uncontrollably to such an extent she was incapable of holding the glass of water. I would, therefore, hold the glass up to her mouth as she would take a few tiny sips.
After about five to ten minutes, Mum would stop vomiting and feel better. I would make her comfortable and tuck her into bed again. It was one of the most distressing sights to witness Mum in such a vulnerable state. Tears would be streaming down my face as I comforted her. I felt so helpless and so powerless. After she had finished vomiting, I would make sure she was settled in bed. I would then wash and disinfect the bucket. Every night, I would lay awake, my door open, worrying if Mum would choke on her own vomit during the night.
Mum’s doctor prescribed a range of anti-sickness tablets,-none of which had any real effect. During the day, Mum would eat her meal. About ten minutes later, she would vomit the whole meal back up again. Mum was nearing the end of her life. It was clearly evident that Mum could not be left on her own and needed 24-hour nursing care. I immediately gave up my three-day-a-week job to look after her full time.
Final direction
In April 2015, we returned to the King Edward Hospital. Once again, we saw the clinical oncologist, Dr Barlow.
“You look very frail,” she claimed as she stared at Mum.
Mum asked how long she had to live.
“Well, most cases such as yours, patients do not survive beyond six months after their operation,” Dr Barlow cited. “You are in your seventh month now, so you are doing well.”
Mum looked devastated. “Are you saying I should have died by now?”
Dr Barlow sighed. She totally ignored Mum’s question. “We will discharge you. There is no need to come back anymore. The palliative care team will take responsibility for you.”
Then without warning, Dr Barlow simply got up and hurried away out of the room, never to be seen again. She didn’t even say goodbye. She completely ignored Mum. Mum looked at me, her eyes wide and sad. They looked watery. It was as if Dr Barlow discarded Mum like rubbish on a litter-strewn wasteland.
A young nurse was left in the room. She asked Mum whether she had booked herself into a hospice.
I pointed out that it was not a luxury hotel. She giggled.
I knew I had to get Mum out of that room and out of the hospital quickly.
Mum was devastated. She left the room a broken shell.
I could not believe the complete lack of sensitivity and the unprofessional approach by Dr Barlow. The way Mum was treated was appalling and horrendous. No one should be treated like that, let alone my Mum.
Mum forbade me to complain on her behalf. In many respects, that was the worst weekend of my life. A veil of sadness came over everything in my life as I watched the Mum I loved slowly change. She looked physically and emotionally drained. She disintegrated in front of my very eyes. Dr Barlow took away all hope. Mum had simply given up, as her worst fear had come true. Death was no longer in the distance. It was imminent. She was now looking death straight in the face.
Once again, I was rendered helpless. I had no answers. I was infuriated with the way Dr Barlow behaved toward Mum. I had to make a choice once again. Do I complain, which would not change Mum’s situation and would use up all my energy, or do I let the event pass over me?
During the weekend, I read my charter again. As at so many other times, it was my cornerstone. I also continued to pray.
Then, as the shock of being told in such a callous and uncaring nature wore away, Mum started to show some fight again. She managed so
mehow to emerge from her darkness. Her indomitable, tenacious human spirit reappeared.
“I’ve had a good life. I suppose I can’t complain. I’ve reached 80 years old. My luck has just run out,” she said to me. “When your time is up, it is up and there is nothing you can do about it.” She still felt intensely alive.
“If you can help me with the stairs to my bedroom, I can sort out my belongings. I know it will be tough for you to sort them out when I’ve gone,” she said to me.
“Don’t worry about that,” I replied.
“Mark, you need to be strong about this,” she added. I could see she was deeply worried about me.
Over Sunday dinner, Mum asked me to bring in her shopping bag that was hanging up in the hallway. I gave it to her. She opened her bag and pulled out her purse. She said, “There is two hundred and fifty pounds cash for you.” I just managed to hold back my tears. “It took me a year to save it,” she added. It was her life’s savings. I told her that I would buy a tie and put the rest in a bank account.
Two weeks of pain management
Family and friends used to say I was strong. If only they knew. I didn’t feel strong a lot of the time. It was a matter of simply getting through each day. On occasions, Mum would squeeze my hand gently as a way of encouragement. She knew watching her die was tough for me.
Mum’s health started its inevitable decline. By now, Mum was mostly expressing her pain not so much in agitation, but by grimacing. She desperately tried to conceal it, but by this stage, it was far too intense.
My nerves and body would twitch like a rabbit if Mum looked in any kind of discomfort. I would constantly ask her how she felt. Worrying about Mum 24 hours a day was emotionally and physically draining.
Peaceful Breeze Page 7
