Endings, Beginnings & Living with The Consequences

As this is my first attempt at a podcast I have included the transcript as well

As the Covid Inquiry began on Monday, this week’s mid-week ramble is serious, revisiting a post I wrote in March about my daughter’s death in April 2021. The inquiry started with the presentation of verbal testimony from those most affected. This podcast is my own verbal testimony of how the pandemic affected me and my daughter. I am not speaking for my son-in-law Kev, my son George, or anyone else. It is their story to tell, or not to tell, in their way and in their own time.

Sarah was my number one daughter, the most beautiful, caring force of nature. You always knew when Sarah walked into a room. The room lit up with smiles, laughter and warmth. Yes, she was loud, but she was full of love, fun, energy and empathy. We were so proud of her for battling so many difficulties in her life without complaint, getting on with things and always wanting to improve the lives of others.

Christmas 2020 was a watershed for me, I was beginning to look forward to the future with acceptance of a revised me following John’s death 2 years previously. The pandemic still affected all our lives, but there was a strange feeling of a new normal, particularly with the ever-changing lockdown rules. Sarah and Kev had been planning to spend time with me over Christmas. But yet again, the rules were changed at the last moment, meaning I could not see them. I had last seen Sarah in September 2020. It was to be the last time I was able to give her a Mum hug.

We kept in touch with daily FaceTime calls, sometimes two or three. Five weeks after Christmas, the tsunami waves of panic and desperation ripped through me again, as they had during the last months of John’s life. On Friday, 29th January 2021, Sarah had a massive stroke. There was nothing anyone could have done.

Her husband, Kev, called the paramedics. They arrived quickly and took Sarah straight to the National Hospital for Neurology and Neurosurgery, realising she had had a stroke. Afterwards, Kev described the panic and confusion when they woke up and discovered Sarah could neither move nor communicate with him. Kev’s description of the look of desperation on Sarah’s face as the paramedics closed the doors and drove her away was heartbreaking. The rules didn’t allow him to even go with Sarah to reassure and be with her. Kev was left in the street as the ambulance pulled away. When he rang me, there was nothing I could do other than provide words of comfort and speak to the doctors at the hospital.

Sarah was operated on that morning and given a fighting chance by one of the foremost doctors in the country, but from day one, her prognosis was very poor. Sarah was always a fighter. She and the medical staff, under incredibly challenging circumstances, did everything they possibly could. From that day until the last day of her life, I was alone 80% of the time, on a terrifying rollercoaster ride, with no break I could operate.

All consultations with the doctors were over the phone. The consultant rang Kev to ask him to come to the hospital to discuss the results of an MRI scan and subsequent treatment. There was no time for me to get to the hospital. Therefore, Kev recorded the meeting so I could see the results and discuss the findings with him. At least this meant I could reassure him that he was taking the right decisions.

The aftereffects of such a massive stroke, followed by a subsequent haemorrhage, craniotomy, infections, drains and abscesses, were just too much. Treatment was stopped on 26th March 2021, the last day I ever saw my beautiful daughter.

That morning I remember waiting for Kev at Russell Square Tube Station. It was a Friday morning, usually a really busy time, but the only people around were medical staff and families of patients. It was eerily quiet for central London. There was a young family with a child in a pushchair with an oxygen tank. I remember thinking how cruel life can be but still hoping that something had happened overnight and Sarah would be ok.

We walked the five minutes to the hospital, were shown into a waiting room with other relatives and then taken upstairs to a room to wait for the consultant. She was incredibly caring and empathetic, but it was so, so hard to discuss the removal of treatment, which would inevitably lead to the death of Kev’s beloved wife and my beautiful, caring daughter, Sarah, but the decision was very clear. We were taken to the side room where Sarah was being treated. It was hard because you were walking through a ward of people who were not allowed any visitors.

I knew in my heart how ill she was, but it was still such a shock to walk into the room and see Sarah as she was then. She was convulsing continually. If she stopped, we would think she had died, but after a few seconds, it would start again. I could not hug her, reassure her, or simply be Mum to my daughter. She was on massive doses of palliative care medication to try to control the convulsions and ensure she was not in pain, but seeing her suffering was so distressing. During that final visit, a tear fell from her right eye down her cheek. It was heartbreaking to wipe it away. I can still feel it on my finger today.

I left Kev at the hospital, got on the tube and then took the train home in a total daze. I entered an empty house, to make the necessary phone calls to family and friends, but there was no one to discuss the conversations we had that day with the consultant. I cannot explain how difficult it was to be entirely on my own, not having anyone to talk to when the phone calls were done, not having anyone to cry with or who could hug me. I wanted to ring or FaceTime Sarah.

Kev stayed with Sarah virtually every hour until she died. Sarah died just after 7 in the evening, on the 4th April 2021, with Kev at her side.  Those phone calls needed to be repeated to say Sarah had left us. Once again, I had no one to share my feelings with, it's not the same over the phone, so I held back.

Watching her die over those 2 months was unbearable, and the memories always will be, particularly seeing the MRI scan results on my phone, realising how much of Sarah’s brain had been destroyed, and being unable to ask questions and then entering the room and seeing her that final time suffering so much. I will carry those scars and the guilt with me until I die.

Kev had to carry so much on his own and could only visit in the last month of her life. He made her smile and made her feel loved and cherished for those last few weeks, which means so much to me. One of the brilliant nurses arranged a date for them by wheeling her bed around Queens Square. I remember how much joy it gave me to see them out in the open air on FaceTime. They rang me as they went round the Square. Sarah looked happy, with a bit of that smile lighting up her face.

Throughout those months, the rollercoaster kept running without the brake. One day there was hope. and the next it was ripped away, right until the last couple of weeks. The medical and nursing staff fought so hard for her and went above and beyond in trying to save her. Her stepdaughters and granddaughters were unable to say goodbye or even visit her. They were so important to her. Our family were unable to visit her. She had so many friends who would have helped her so much during her last few weeks, but again they were unable to visit. 

I stuck to the rules, my son stuck to the rules, Kev stuck to the rules, Sarah’s stepdaughters and granddaughters, who she adored, stuck to the rules, the rest of our family stuck to the rules, all her friends stuck to the rules. For the first six weeks, Sarah was alone. Although the staff were incredibly caring, efficient and professional, they knew nothing about Sarah, her sense of humour, they had never heard her loud, dirty laugh, and they knew nothing of her kindness, empathy and love of people and life. We never knew how much she understood. She was locked in her brain, unable to speak. Sarah was unable to tell them anything about herself, her life, her family, who she really was, she couldn't communicate with them, and we weren't able to be there to tell them about her, who she was, what she liked and didn't like, where she worked, they didn't have time to ask, they were working flat out and were often moved on to other wards.

I cannot ignore the unedifying sight of yet another Boris Johnson Roadshow unravelling alongside the Covid inquiry and the publication of the “partygate” report.  This is my personal opinion, but Boris Johnson’s behaviour in allowing parties to go ahead has upset and hurt me, as has his total lack of responsibility, understanding and compassion. I was completely alone during the vast majority of this time. Lockdown rules didn’t allow others to visit me, except in very limited circumstances. I didn’t see anyone except virtually.

I could only see Sarah three times without a screen from March 2020 until she died in April 2021. But, yet again, last week, Johnson tried to defend the indefensible. Johnson allowed a partying culture to become acceptable within No 10, flouting the lockdown rules. Johnson partied, which is very clear he received a fine. The worst thing is he shows absolutely no humility, empathy or understanding of what it was like for the hundreds of thousands of patients like Sarah and relatives like us. There is a lot I would like to say, but I must hold my tongue. If Johnson is ever allowed to return to front-bench politics, it will show what utter contempt the Conservative Party have for the hundreds of thousands of people who died alone and terrified, for their relatives and friends who had to watch on the sidelines and for the fantastic, dedicated, professional medical and other staff who cared for our loved ones.

Never again will I hear that ‘Hi Ma, it’s Sar’, never see her bubbly face on FaceTime, which I did every day during lockdown, at least once. The evening before everything changed was the last time I saw my daughter's beautiful smile. The image is burnt on my memory. The irony was that she had not been well for a while, but she commented in that last FaceTime she felt better.

Never again will I get the call early in the morning on her way to work, like I did before lockdown, sometimes just to say hello, sometimes in a panic because she perceived she had done something wrong and was going to get in trouble. She never had and never did.

Never again will I hear her infectious, loud laugh, never hear the clattering of her very high heels on the pavement, never get to eat one of her wonderful Sunday lunches, not share a mango and pepper gin at the local pub. 

Never will I know if I had been able to see her and Kev in person before her stroke, would we have made her go to the doctor?

Never will I know how much she understood. Did she feel I had abandoned her whilst she was alone in hospital?

Never will we know if having those she loved around her in those last 2 months would have helped her survive.

The Covid Inquiry is essential to learn lessons from right and wrong decisions and mistakes. I have faith in Baroness Heather Hallett. She seems rigorous in her approach, dealing with obstacles deliberately placed in her path. I am sure she will have to face criticism, some of it bordering on harassment and even threats, if her findings don't toe the line. Whatever we all feel about the decisions made, we were all on a journey through charted untouched stormy waters. It ggwas an incredibly challenging period in everyone's lives. Many people, including Government ministers, individuals and others, made mistakes. We must learn from them.

I am tired of the bickering, sniping, gloating and lack of empathy shown by some of our alleged leaders and ex-leaders, trying to save their careers. I still live in the same house. I haven't made a fortune at speaking events, appearing on celebrity TV programmes, presenting GB News programmes, nor through PPE contracts. I just lost my daughter without being able to be with or support her during the last and worst two months of her life.

I am not going to criticise lockdown. I do not subscribe to conspiracy theories, some of them are grossly insulting to those who stuck to the rules and lost those we loved. I know how many people died of Covid. Hopefully, the inquiry will continue to be rigorous in its search for the truth.

I will criticise those who made up the rules, broke them and continually justify their actions by saying nobody told me or all ‘gatherings’ were within the rules, some of the defences outlined in the Privileges Committe Report, or others saying everybody broke the rules. No, everybody didn’t break the rules.

I will never recover and will never be the same person I was five years ago, but I am learning, yet again, to be a revised me after yet another ending I need to accommodate. It is a beginning of sorts, but I will carry the guilt with me until the day I die.