Paul’s Bravery in Battling with Acute Myeloid Leukaemia by Natalie Cheung 04/10/2021
The Beginning at Bedford Hospital (Dec 2018)
Kim booked a day of holiday from work to take me Christmas shopping on Friday in Dec, this was swiftly changed after we heard on Thursday that you had been admitted to Bedford Hospital after being diagnosed with Leukaemia. Our world was turned upside down: your brother was in tears; both Justin and Kim were so angry and bitter; and I was in shock. I told myself that I needed to put myself into work mode and asked myself what would I need to do to lead my team of teachers or trainee teachers if they came to me with a crisis in their hand. So I asked Pete to go to work on Friday, and said Kim and I would visit you. Justin then asked work to let him take the Friday afternoon off so that he could see you too. While Kim was driving, I prepared my children, I asked them to try their best to not cry in front of you, as you seeing such sadness in us would make it more painful for you. I suggested to take a walk down the corridor if they began to feel tears were filling up. They both did Pete and me proud, they held up well. I was impressed by how calm and caring they were towards you. Then I asked you about what you wish to do in terms of informing your siblings, whether you would like to talk to them directly or whether I could help you by taking this difficult task away from you so that you could focus on the road ahead. I felt very privileged that you trusted me to take on the role of the gate-keeper during this painful initial phase of your battle with the illness. We were so scared after they transferred you into a private room at the top floor of Addenbrooke’s Hospital with only 2 visitors allowed at your bedside at any given time, we didn’t know what to think. We were so sad seeing how alone you were. We became more relaxed after they relocated you into a ward with other patients and we were able to visit you as a family. I knew you were beginning to feel better when you asked me to make you chicken porridge, but I didn’t want to rush into things. So I made you porridge with dried scallops, you were impressed and it was good to see you getting your appetite back. We then visited you on Christmas Day, the first thing you said to me was whether I had cooked the turkey. Feeling quite relaxed, I said I would cook the turkey in the afternoon and would have our Christmas dinner in the evening and it would be such a shame that you could not be there to carve it this year. But we were so happy to see you getting better gradually.
Then in January, you rang us unexpectedly one evening to tell us that the doctor said you could be released. Pete and I started to clear all our junk in the spare room, I was amazed by how quickly we could move a huge amount of stuff out of the way to make a room for you so that we could take care of you during this less scary phase. Throughout this phase, I was thankful that Justin and Kim had been able to help Pete with some of the driving in between their work commitments while I was trying to complete my Play Therapy qualifications. In March, you told us that you would like to move back to your own home as your condition had become more stable and you were feeling much better.
Then you started to make your regular trips back to us, starting to cook food and bring us different treats. We were delighted that we had the normal you back until COVID-19 hit the world.
COVID-19
The national and local lockdowns meant that you could not come to us and we could not go to you. While we were really worried about how the illness made you so vulnerable, there was little we could do. Never had we felt so helpless and completely not in control of anything. We drew comfort from hearing from Kim and Asim after they visited you by your door step, and Justin told us that you sounded ok when he talked to you on the phone. Whether rightly or wrongly, I felt the restrictions caused by this virus gave Pete and our family some breathing space to reflect on what we all went through as a family. I started to realise how much stress we had individually experienced and how we needed to start to take time and efforts to take care of ourselves in order not to be burned out so that we could be there for you. It was comforting for us to hear that you tried to make the best of the times between hospital treatments to rest and watched your favourite sports and YouTube videos to learn cooking and enjoy eating your favourite foods by yourself.
The Inevitable News
In January 2021, you shared the most painful news with your siblings. I walked into part of the WhatsApp conversation, I was numbed and speechless when Pete filled in the missing gaps. It was days later before I could type the following message and sent it to you via What’s App.
I sent the following really long heart-felt message to you via WhatsApp on 21st Jan 2021 at 10:09 am:
Dear Paul, how are you feeling? I am so sorry to hear the latest updates you shared with the family, I don’t know what to say to you apart from letting you know that you are in our thoughts, and let us know if you want anything. I thought it would be important for me to let you know that the four of us would be managing this period in our own ways to support you, which would not be the typical Chinese traditional ways like what other people think we should be doing. I spent my teenage growing up here, I was educated here, and I have been and continuously working here. I am highly influenced by the British ways of life, and I have brought my children up so that they are fully integrated in this society. This is possibly why we find families such hard work and many things are in conflict with our values and beliefs. I struggle with many of the Chinese traditions and values, hence I haven’t yet called you to speak to you etc. I strongly believe that you might appreciate some time and space for yourself now you have shared the most difficult news. I don’t believe everybody calling you for you to repeat the same things to people would be helpful and healthy. Of course I also respect people needing to do what they think are the right things to do. At the moment I am still trying to process everything, I am not ready to speak with you yet, so I am messaging you instead. I want to let you know sincerely that we are all here for you, and we are all thinking of you at such difficult times. Look after yourself, take each day as it comes and treasure it xx
You replied at 15:01pm
Dear Nat, Thanks for your text, I was in hospital for my blood test. I did accept the inevitable, you do not have to worry about me. I will take each day as it comes. Everybody has different thought and life, I am ok with that, you do not have to worry about me, all understood, you have a nice day.
Towards the End
You held a very positive attitude in the time you had left, it enabled you to make the best of each day and you did not want to bother any of us towards the last part of your battle when things were getting so tough and painful. On the evening of 7th Sep, Catherine and Linda contacted Pete to tell him that nobody could get hold of you when they rang your mobile endlessly throughout the day. Pete decided to drive over to your house at 11:00ish when I was getting ready for bed, he told me that was what he was going to do. Within minutes after he left, I started to think for the worst. I lied awake until he came home at around 2:30ish am. He told me you were not in the house, he then rang Bedford Hospital and found out you had been admitted after a fall. Nobody seemed to be able to tell him anything else. The doctor rang the next day to tell Pete how the fall led to the bleeding in your brain and advised him to see you asap, only one visitor was allowed. Pete pleaded with the doctor to make an exception for Catherine and Pete to visit, explaining Catherine being the other sibling in the UK. A few days later, Pete got you to do a video call with me. I was so shocked and sad when I saw how the fall changed you, you were no longer the Paul that I knew. Catherine then stayed with us. I drew comfort from witnessing how Pete and Catherine were able to support each other and visited you and comforted you in your last days. On Sunday 19th Sep at 11:00 pm, we had a call from the doctor on duty explaining how your responsiveness deteriorated so rapidly over the weekend. He suggested for Pete and Catherine to visit asap, he feared this might be the last chance to see you. We all came straight away, I waited in the car because of the restrictions. After about 40 minutes, Pete and Catherine came to ask me to speak with the doctor as they could not comprehend what the doctor was trying to communicate to them in turn due to Catherine’s level of English and Pete’s hearing difficulties and his emotions were all over the place. So I agreed, and I thought the poor doctor now having to explain the same things for the 4th time, including what he said over the phone. I thought: He must think those two being Tweedle Dum and Tweedle Dee, and here comes Tweedle Dum Dee Dum by the time I appeared. He was really lovely and supportive, he explained to me how poorly you had become and it was time for us as a family to start considering the administering of the End of Life Care Plan. I came to see you in person, it was very painful not knowing whether you could recognise me or hear me though you kept looking at me intensively. I explained to Pete and Catherine how the plan would work and what it would involve. They both discussed the situation sensitively and they were really brave to make the most difficult decision in order for your suffering and pain to start ending. We were deeply saddened when we had the news that you had left us at 6:00 am on 22nd Sept. We came to the hospital to see you and said our goodbyes that morning, we drew comfort from seeing you looking so peaceful.
Paul: You were so brave, so strong and you had been amazingly selfless in your battle with your illness. You will be sorely missed, but you will forever live on in all of our hearts. May you sleep well and rest in peace, beloved Brother-in-law.
Nat xx