We have had a snowy day today in Yorkshire. It’s the most snow I have seen in a while. I took the opportunity to walk out in the snow and enjoyed taking some photos. We are fortunate to have a garden that I can go for a walk in. I am not wanting to walk out in public places as my daughter is shielding.
Walking is something I would like to do more of in the future. Friends and family have encouraged me to walk especially when we were coping with my daughter’s illness. A way of keeping healthy, getting fresh air and ‘clearing the mind’.
Blogging and writing helps me think , reflect and clear my ‘head space’.
I started writing my second book 2 days ago. I have so far written 2000 words. I am not sure if I should make this book a short story ( minimum of 7500 words) or to make it as long as my last book , ‘Our Family’s Journey Through Disability and Cancer’ ( 27000 words).
My next book continues on from the last book. My family and I have encountered a very difficult 4 months in 2020.
Thank you once again to those of you who have read ‘Our Family’s Journey Through Disability and Cancer’. Please feel free to contact me with what you would like me to include in the next book. Are there any areas from my last book that you thought I should have written more about?
As I think about what I can achieve in 2021, I reflect on what 2020 brought into my life.
I started this blog in March 2020 and published my first book, ‘Our Family’s Journey Through Disability and Cancer’ in October 2020. I also started a new job and enjoyed many special moments with my family while in lockdown. I have seen my daughters use their creative skills to keep them busy and happy in this pandemic. I have enjoyed many evenings watching Netflix and catching up on dramas on various TV Channels with my husband.
We also have had several stressful and worrying moments that included a family death and experiencing the journey of cancer again. Sadly a dear friend was also diagnosed with cancer at the start of the pandemic. Her strength, faith in God and sense of humour is one I admire and continue to learn from. I miss not being able to see her or give her a hug because of the year we had.
I want to thank everyone who has read my blogs or bought my book. I am hoping my blogs and book will help others through difficult times, whether it be the challenges of the pandemic or challenges in coping with mental and physical health. I am hoping to publish my second book this year.
I received my Covid -19 vaccine on New Year’s Eve. It was a significant event for me. Like everyone else, my family have had several restrictions placed on us during this pandemic.
We start 2021 with uncertainties around the opening of schools, the vaccination programme and the rising rates of infection with the new Covid strain. Our NHS is being stretched with the massive increase in hospital admissions and the lack of staff in hospitals due to staff illnesses.
Despite the UK’s high death rate of over 70,000, there are still some who doubt the seriousness, and even existence of the virus. Some feel wearing a mask, being in lockdown and the need to isolate if one has symptoms, are the government’s and scientists’ way of controlling their lives.
The impact of this pandemic has been beyond what we imagined a year ago. It has taken away so many lives prematurely, regardless of age or underlying health conditions. It has also brought about a new chronic medical condition called, Long Covid Syndrome, that can affect anyone, regardless of age, underlying health problems, whether an individual needed hospitalised or not while infected with Covid-19. It’s a condition that is still being researched and the list of illnesses associated with this continues to grow. You can read more about it using this link.
I am a doctor in General Practice. I come across at least one person experiencing ‘Long Covid Syndrome’ and at least one death probably caused by Covid 19 on most days that I work. Covid 19 is real and its impact on our health and economy is not to be ignored or thought of lightly.
My family and I stay up to see the New Year in every year. This time as we watched the fire works in London and heard the chimes of Big Ben on the television screen, it took us a while to shout out ‘Happy New Year’ . We couldn’t help but reflect on those who lost their lives in this pandemic. We also thought about the NHS workers who died. At least 207 NHS and health care workers lost their lives last year. Despite the lack of Personal Protective Equipment, they continued to work. We also thought about how cancer has brought so much sadness into our lives again.
My wish for 2021 is for this year to be a better year; for us to have our ‘normal’ lives back. However we cannot achieve this individually. We are in an era where working together, being thoughtful, looking out for each other and following guidance closely is the best way out of this nightmare.
We all want a better life this year, let’s do our best to make it happen.
‘Christmas is Coming’! ‘It’s starting to look a lot like Christmas’. These are the songs that often echo in my head as I am wrapping presents and decorating the house leading up to Christmas. This year the songs that echo in my head are, ‘All I want for Christmas’ and ‘Driving home for Christmas’. I am sure my thoughts reflect the thoughts of most of us as we experience a very different Christmas. There is an atmosphere of worry, sadness and anxiety . As a family we have an added complication to this year. My oldest daughter Kirsty is currently in hospital receiving treatment for relapse of her leukaemia
Since March, as we experienced the pandemic, I completed and published my first book ‘Our Family’s Journey Through Disability and Cancer’. I was doing my best to convert a negative year into a positive one for me and the family. I had wanted the time to write and this was my opportunity to write!
However our lives took a turn when my daughter Kirsty, 19 years old, relapsed with leukaemia in August.
Kirsty has been in a London hospital for more than 4 weeks now. We are hopefully going home for Christmas in the next few days.
Since the 17th of August, Kirsty has spent almost 10 weeks in hospital. Prior to this she was shielding till July as she was in the extremely vulnerable group. A difficult situation to cope with for any teenager looking forward to adulthood and achieving their ambition.
London is 3 and a half hours away from where we live. My husband and I have been taking turns to be with Kirsty in hospital. Therefore 10 weeks of our family time has been taken away from us. 10 weeks of Kirsty’s year as a 19 year old has been spent as a patient . Melissa, her 13 year old sister, hasn’t had her sister or both parents with her at the same time at home for 10 weeks this year. My sister in law Shona has helped us through this time. She bubbled with us and isolated herself before she stayed with us. 10 weeks of her time was spent away from her husband and family, just to be with us, looking after Melissa and cooking and baking for us. We are well stocked up with shortbread and cakes for Christmas.
Living through Covid 19 with cancer is unbearable. But like many going through this, we have no choice but to keep going.
Despite being in London for over 4 weeks, Covid 19 has stopped Kirsty and I from seeing my sister and her family who live in London.
The treatment Kirsty has received is called Car- T ( Chimeric Antigen Receptor T Cell). It’s a groundbreaking treatment for leukaemia and lymphoma. I remember reading about it 2 years ago, while Kirsty was still receiving chemotherapy first time around for her leukaemia. I remember feeling happy to hear about this treatment but also hoping Kirsty will never need it.
Car -T is an ‘immunotherapy’. It’s a treatment when a person’s immune cells called T lymphocytes are removed from their blood and then sent away to the USA or Germany. The cells are genetically modified then transfused back into the patient after 4 to 6 weeks. These modified cells are called ‘soldiers’ by some people. This is because these cells are used to kill off whatever cancerous cells that are left in the body. Prior to the transfusion, chemotherapy is given to ‘clear the patient’s bone marrow’ in preparation for the treatment.
There are only a few cities in the UK that provide this treatment; London, Bristol, Newcastle and Manchester. We are fortunate in the UK to have the NHS ( National Health Service) fund this treatment that was approved by NICE ( National Institute for Health and Care Excellence) in 2018.
Outside the UK, some people have had to travel to other countries for this treatment and some people wait in anxiety as they wait to hear if their insurance company will approve funding for their Car- T treatment.
When the coronavirus pandemic hit the UK, several patients who had cancer, experienced a delay to their treatment. If Kirsty was diagnosed earlier this year, she may have had to wait months and not weeks to start Car -T. This might have been because it was unsafe for treatment to go ahead or with the changes to air travel, cells could not be moved out from the UK to be genetically modified then moved back again to the UK . Patients had to continue with chemotherapy till it was possible to receive Car -T treatment as lockdown eased.
The side effects of Car -T treatment is unpredictable, and yet can be serious and sometimes life threatening. It can range from mild fever to being confused or going into a coma to even death.
When counselled, the information we received scared us and worried us. The information given was honest; as it should be. I remember Neil and I walking out of our initial consultation on Car-T feeling numb and not knowing how to feel and what to expect. On one hand it was a positive thing that Kirsty could have a form of treatment that could cure her but the treatment process itself could have made her very unwell or she may not respond to it. No one could predict what could happen.
The treatment process seemed long. An intial 5 days in hospital for apheresis( removal of T cells from her blood), then a wait for between 4 to 6 weeks before being called back in for high intensity chemotherapy for 4 days and then a few days of rest before transfusion of her Car-T cells.
Kirsty has had to stay in hospital for over 4 weeks for close monitoring of side effects. We are now approaching Day 28.
It has been a long stay in hospital. As we packed for this long hospital admission, we had to think about an event Kirsty could look forward to and count the days down to that day. Christmas was the most obvious event to look forward to on the 16th of November!
Kirsty has been focused on counting down the days to Christmas; a sign that going home is getting closer.
In my book ‘Our Family’s Journey Through Disability and Cancer’, I mention how everyone’s journey is different. I also mention the importance of packing a suitcase with the most appropriate ‘items’ to help one through this journey. A suitcase that’s bespoke to your child and family’s need.
For us our suitcase consisted of items relating to Disney, art and craft, a countdown calendar to Chrstmas, hope, prayers and love. All ‘items’ to help Kirsty to keep positive and to focus on getting to the day she gets home for Christmas.
With the help of support workers from the charity, ‘Teenage Cancer Support’, Kirsty’s room was full of pictures of Christmas scenes she coloured in, posters, Christmas chains, Christmas felt decorations and festive lights on her window. Her room looked like a magical castle for Princess Kirsty.
Her room also overlooked the BT tower. We always took note of the messages displayed each day on the BT tower! World Aids day and World Learning Disability Day were some of the messages we spotted.
Kirsty loved looking out of the window.That sometimes took up 90 minutes of a day.We also had a brilliant view of the sunset everyday, as seen in the photo above.
As I write this blog her board shows 7 sleeps to Christmas. It was 39 sleeps when she was admitted. Kirsty has coped well emotionally but 7 sleeps still seems a very long time away.
Kirsty’s determination and strength to keep going and focusing on the positive moments ahead, has helped her get through this time. However, most days she also gets fed up, bored and teary. She is sad that once again she has lost a bulk of her teenage years to being in hospital.
Kirsty’s side effets included a fever which settled with Paracetamol and a mild tremor that resolved in a few days. She also experienced lethargy and a cough.
I found a Facebook page dedicated just to patients undergoing Car-T. I have benefited so much from this just reading about other people’s experiences. It’s also encouraging when success stories are shared. It gives us hope.
I have also had the support of friends, family and church. The journey of cancer is a lonely one. Untill one experiences it, I think it is difficult to fully understand what families go through. However just knowing that people care and are praying and thinking of us is comforting.
Kirsty’s mobility once again was affected by chemotherapy. It has gradually got better with the help of daily physiotherapy.
Kirsty was discharged from the ward and moved into a Clic Sargent accomodation on Day 15 of her Car-T infusion. She has daily hospital visits, checking she is still doing OK. Side effects can still occur up to 6 weeks or longer. We were fortunate the Clic Sargent accomodation for families, reopened just as Kirsty got admitted. It had been closed due to the pandemic. The staff have been great at following strict Covid rules and we feel safe here.
Since moving to this accomodation, Kirsty has been able to go for walks, with her mask on. Kirsty doesn’t normally like long walks but she is appreciating her ability to move around using her legs and not her wheelchair. After a year of isolation, she is enjoying observing the people around her and watching the world go by.
As a family who have had their lives put on hold due to the coronavirus pandemic and then having to go through the journey of cancer again, being in hospital in the weeks leading up to Christmas, we will be the happiest people in the world if we can just be in our own home together for Christmas. Melissa said to me last week ‘Christmas wouldn’t be Christmas without Kirsty being at home’.
We try to cope through this difficult time by remembering the positives in our lives. It is by focusing on the positives can we move on and live our lives. Good health, love, friendship and family to me is the best Christmas present.
However let’s remember and reach out to those who find Christmas the loneliest time in the year. The UK have had over 65,000 deaths just related to coronavirus. There will be a huge number of families grieving loved ones they have lost this year. We lost my husband’s father in January this year.
I take comfort in remembering why we celebrate Christmas. The birth of Jesus reflects hope and happiness.
Luke 2;11 ‘ Today in the town of David a Saviour has been born to you; he is the Messiah, the Lord’.
Watching songs of praise this afternoon also helped instill the spirit of Christmas in me as I listened to the top 10 Christmas Carols in the UK. You can watch it on catch up using the link below.
I am glad to say today is the day my book is officially published as a print and ebook. It’s a book that was written to help those going through challenging times in their lives. 2020 has been a testing time for all of us as we live through Covid 19. We will probably still be wading our way through this pandemic as we see in 2021.
This book will help those who are supporting friends or family members who are going through cancer.
As a doctor myself I hope health professionals will find this book beneficial as they support patients and their families in a similar situation.
My 19 year old daughter, Kirsty, who has Down Syndrome and sadly encountered leukaemia in 2016 is the person who has inspired me to write this book. I share how as a family we lived through her cancer diagnosis for 2 and a half years.
I also describe the close sibling relationship that Kirsty and her younger sister Melissa have. Both daughters have enriched our lives. We have lots of fun memories as a family. It’s unusual not to hear laughter and giggles in our house.
Money from the sale of my book will be donated to Clic Sargent-Cancer Charity and Down Syndrome Association UK. You will read an ‘Advance praise’ from both charities in my book. I want to thank both charities for their contribution. Below are quotes from the charities.
‘This book gives an insight into the personal pain and uncertainty of having a child diagnosed with cancer, but even more than that a unique view of helping your child cope with treatment when they already have other needs’-Clic Sargent
‘ Janet brings valuable lived-experienced to anyone supporting a child through treatment for leukaemia’ Down Syndrome Association
My book is available as a paperback on Amazon, and as an ebook on Kobo, Amazon, Apple and, Barnes and Noble. It is also available for wider distribution on Ingram Sparks.
This link will direct you to how you can purchase my book.
October is Down Syndrome Awareness Month. I write this post in the city where my daughter Kirsty who has Down Syndrome was born in 2001. She was 5 months old when we left London. We haven’t lived here for almost 19 years but have continued to visit family or attend modelling events and auditions several times a year- pre Covid 19, of course.
The nature of our visit this time isn’t a social one sadly. However, I am reminded once again about our time in London all those years ago, driving past the borough we lived in; pointing out to Kirsty where we bought her first car seat and the park we took her to the day before she was admitted for her cardiac surgery at Great Ormond Street.
In my book ‘Our Family’s Journey Through Disability and Cancer’ ,which was released on the 19th of October , I share our moments from when we were first told Kirsty had Down syndrome and her time through childhood to reaching adulthood last year.
When I was growing up, I remember getting to know a young lady with Down Syndrome. I can’t remember her name but I often saw her at church. I used to think to myself why would anyone treat her differently. I was a teenager then. She was a young lady like any other young lady I knew. I saw her as someone with a great personality and content with her life. She also had a supportive family.
However I also remember driving past a ‘house’ or a ‘centre’ as people called it, on my way to school. It was a place where children and young people with Down Syndrome spent their days. I never visited it but I just remember people referring to it as a day care centre. My impression of it was, that the kids in the centre did not go to school and were there for the day as their parents went to work. They were seen as kids with a learning disability and therefore not able to be educated or hold a job in the future.
When Kirsty was 4 years old, Neil and I took Kirsty to this centre. We were in Kuala Lumpur, Malaysia. The city I grew up in. The work the centre did impressed us. It wasn’t only a ‘day care centre’, it was a centre where children with Down Syndrome received physiotherapy , play therapy and where education was introduced. I was so pleased to see that attitudes had changed from the time I lived in Malaysia. I have lived in the UK for 26 years.
Have attitudes really changed? I struggle to answer that question in 2020 and living in the Uk.
My husband Neil and I still remember the day we were ‘told off’ by an emminent doctor for not wanting to terminate our pregnancy. This doctor told us if Kirsty survived she would be terribly brain damaged. This assumption was mainly based on her diagnosis of Down Syndrome. This was 19 years ago.
We also remember going around a primary and secondary school for Kirsty. Both headteachers at the end of the visit made it clear they did not want Kirsty to attend the school. Neither of them had met Kirsty and once again a decision was made without meeting her. This was 16 and 7 years ago respectively.
‘Don’t Screen Us Out’ https://dontscreenusout.org is an organisation that protects the rights of people with Down Syndrome and aims to encourage the medical profession to provide updated and true information on how people with Down Syndrome are able to lead healthy and happy lives. The organisation is currently campaigning for the government to change its rules on the Abortion Act. An abortion after 24 weeks of pregnancy is currently illegal unless the fetus has a disability. This means a baby with Down Syndrome can be terminated up to term.
There was also the controversy over the recent T shirts that were discrimanatory towards people with Down Syndrome. It was shocking that propaganda encouraging hate was so easily accessible. Quite often there are negative posts on social media towards people with a disabilities, including those with Down syndrome.
As a mum whose daughters are in the performing arts, people with disabilities are definitely under-represented in the arts. Kirsty’s agent submits her for several jobs but the ones she gets shortlised for are the ones needing a person with Down Syndrome specifically.
Terminology used towards people with Down Syndrome or any other disabilities can be derogatory, offensive and outdated. Sometimes these terminology is used in an innocent manner and not meaning to cause harm. However it is important society is informed on what words could upset someone.
I want to use this month to tell you how much I have learnt not just from my daughter but from the other young people with Down Syndrome and their families, who we have got to know and who have become great friends. The photos in this blog are Kirsty’s friends whom she has known since a very young age. The group photo is one with her friends from her dance group, Dancestars and the other is of friends whom she has known since she was 3 years old. Sadly for most of this year she has mainly communicated with them through facetime.
We are honoured to have met and made friends with people we would not have known if we didn’t have Kirsty in our lives. We treat each other’s children as our own. Kirsty has such lovely supportive friends who have been there for her through her treatment with leukaemia. She has developed close supportive friendships that are selfless and supportive. The sort of friendships that my younger daughter Melissa, who is 13, has with her friends. Melissa and her friends at school do not have a disability. Melissa’s friends are always so supportive of Kirsty and show her so much care and love.
People with Down Syndrome are able to make friendships, value their friends and have a fun and active social life.
My husband and I have recently enjoyed seeing Kirsty and Melissa spend most of their days together, especially since Kirsty came home from hospital. They have watched several of their favourite films together, played board games or sometimes just giggled and cuddled together.
Most siblings of people with a disability are not ‘burdened’ by their siblings like traditionally thought. Instead they are proud of each other and learn so much from each other. Of course this can change at difficult times or as they get older. Sibs Uk, recently released a report that indicated that younger siblings of children with a learning disability were not able to have their parents’ attention during lockdown. With schools shutting and families not getting the usual support package they had during lockdown, parents have had to channel their attention to their child with a disabilty.
Sibs UK also released a report about adult siblings who found it difficult working and caring for their siblings and elderly parents during the pandemic. Sibs is the only UK charity for children and adults who are growing up with or have grown up with a disabled brother or sister. They provide information, support and training to siblings, families and health professionals.
However, there is also research indicating that more than 96% of siblings have said that they had affection toward their sibling with Down Syndrome. Also 94% of older siblings expressed feelings of pride. Please see full report on this link.
Melissa has never been treated differently at school due to her sister’s disability. However I am aware that some siblings can face discrimination or bullying at school because of having a sibling with a disability.
Sometimes, these times of discrimination could be used as an opportunity to educate young individuals on showing respect towards other human beings.
As a society we have definitely progressed in our attitudes towards individuals with a disability; there are more opportunities for education, being in the work force and independant living. However there is still so much more work that needs to be done in educating the general public and health professionals on the lives people with Down Syndrome could lead today and in the future.
I remember thinking to myself and saying to my husband when pregnant with Kirsty, ‘If we don’t have hope and expectations for our own daughter, how can we expect others to feel the same’.
I would love to hear from readers. Please feel free to contact me via my website
Following my last blog ‘An Unexpected Journey’, my daughter Kirsty is home after being in hospital for just over 4 weeks. However her treatment isn’t over yet and there will be several hospital admissions as we go through this horrible time.
It is becoming unbearable seeing Kirsty being so sad. I have never seen my daughter’s mood as low as this ever. For those who know Kirsty well, they will describe her as a bubbly, friendly young lady with a great sense of humour.
Being in a hospital room for over 4 weeks, not knowing when you will get home terrified her. It felt cruel. Not only was she diagnosed with leukaemia again and having her life come to a halt again, she couldn’t see her sister and friends. She was once again in lockdown this year, but this time in a hospital room, receiving chemotherapy.
Lockdown has had its negative effects on all of us. However the levels of its effects are varied, depending on what our individual needs are. Most people expressed changes in their mental health.
Although we coped well as a family during lockdown, I could tell that my young daughters were missing their friends and school.
The inability to take national exams and the recent school examination results are examples of how coronavirus has affected the younger generation. Ambitions and dreams affected in a negative way.
We now also see young people trying to adapt to a new way of schooling. My younger daughter and her year group are isolating at home again within 2 weeks of starting school. She is grateful her isolation period ends before she turns 13 this weekend. She is relieved she can now at least meet 5 other friends in a park on the day she celebrates becoming a teenager. She is hoping that her family will be at home that day and there aren’t any unexpected hospital admissions.
It must be so difficult for those just starting university, who find themselves locked in their new homes even before they have had the chance to settle into their new lives. There is also the worry if the country goes into lockdown again, university students may not even be home at the end of the year when the holidays start. I myself remember needing to isolate just weeks after I started university in a country 3 500 miles away from my home then, due to chicken pox. I felt lonely and alienated as friends left food by my front door and I wasn’t allowed to see anyone.
As for the elderly and vulnerable adults (physically and mentally), not only are they more vulnerable to the virus but also plagued by loneliness as they isolate at home. Missing out on seeing family, friends and attending places of worship becoming something of the past.
Charitable organisations like food banks, Age UK, Teenage Cancer Trust, Clic Sargent, NHS Heroes, Acting for Others, NSPCC and lots more have done so much to support those most in need during the pandemic. Sadly the same charities have experienced reduced amounts of funding during this time.
A cancer diagnosis for anyone is difficult. However for the younger generation there are other implications. Dealing with a life threatening condition, just as they are transitioning to adulthood, planning their futures and wanting to establish relationships makes it all very difficult. This situation is now made even worse for them as we live through this pandemic.
Activities that were around to support young people going through cancer, like social group meetings with other young people, pamper sessions and many others have stopped due to Covid 19. Seeing their own friends socialising and moving on with education and employment as lockdown eases must be so sad.
These young people are also at a time in their lives when physical appearance is important for their confidence. The loss of hair and other physical characteristic changes that happen can affect mood further. Kirsty was hoping to have her hair dyed pink. She is now looking forward to receiving her pink wig.
Kirsty is a dancer and loves singing. Her mobility is poor now and her voice is weak so she misses dancing and acting.
My daughter, while in hospital, facetimed family and friends . Friends and family also waved at her from the hospital car park. It was good to see her smile when she saw them. However sometimes conversations were cut short as she felt emotional seeing them. She missed the face to face contact.
Even though Kirsty saw my husband or I daily, she needed someone else to help her take her mind off what she was going through. She needed to be encouraged to do the things she normally loves doing and stepping away from the current reality.
Clic Sargent and Teenage Cancer support provide a vital service, more now than ever before, during this pandemic. Kirsty has benefited from their positive input. A recent survey by Teenage Cancer Trust showed that young people saw a support worker from the charity more than they had before the pandemic. Below is a summary from recent research done by the Teenage Cancer Trust.
■ 81% of respondents had been asked to shield, and of these, nearly all (91%) said they had been affected by shielding ■ During the pandemic, young people with cancer found accessing a physiotherapist (69%) and psychologist (53%) more challenging than normal ■ Of everyone in their treatment team, young people with cancer were most likely to see a Teenage Cancer Trust Youth Support Co-ordinator more often than they were before the pandemic ■ Seeing friends and family (53%), accessing work or education (44%) and young people’s mental (27%) and physical health (25%) were all areas that young people felt were difficult to manage during the pandemic
The Down Syndrome Association have also recently released resources to help people with Down Syndrome who need help with their mental health especially during the pandemic. You can get more information about it from the link below.
It is well known that good mental health supports good physical health. Compared to when she was diagnosed will leukaemia 4 years ago at the age of 15, my daughter’s mental health is affected more now than before. She understands what she is going through from her past experience and is afraid. Just when she is about to start college and was feeling positive about herself and her achievements , leukaemia knocks on her door again.
It is heartbreaking seeing her so sad and anxious. Kirsty however does her best to occupy herself with painting and colouring posters, and watching anything Disney. Her hospital walls were covered with colourings of various Disney Princesses.
Her support workers have bought her Disney colouring books and spend time talking about Disney princesses. She yesterday received a ‘Get Well Soon’ Video from ‘Aurora’ and ‘Belle’. A video that made Kirsty smile. Such a thoughful video that made me cry.
Since coming home, her sister Melissa has been great at making Kirsty smile. I watched them put make up on each other yesterday , just like they did when Kirsty was well.
A positive mind is always important to help us get through difficult times. It isn’t always easy to feel positive but the right input to help lift spirits or make one laugh or smile, even if it was only for 10 minutes a day has its benefits. Mental health definitely matters when you are going through cancer treatment.
Post traumatic stress disorder is known to occur in people who have completed cancer treatment. Kirsty probably experienced this in a mild manner when she completed her treatment last year. She would often cry when she was reminded of it and would look to us for reassurance that it was gone.
I feel it is important to understand and help Kirsty with her mental health at the moment while she goes through treatment. We do not know how long it will be before she reaches remission again. Looking after her mental health and our mental health is something we can do for now to help her.
I am publishing my book this month. I have been reading it again today, and reminding myself what we did as a family to help us through our last journey. I find myself coming up with new ideas which I hope will benefit Kirsty, Melissa, Neil and I.
I hope to keep blogging about our current experiences. Blogging helps me clear my mind and I hope sharing my experiences will help others.
Please also consider supporting charities if you can, as they continue to help the most vulnerable during this pandemic.
Please feel free to comment or share experiences in the comments section at the end of this blog.
Monies from my book will be donated to Clic Sargent and the Down Syndrome Associaltion.
You can read my other blogs on my website http://www.listentomythoughts.com. You could provide your email address in my contact page so you could be informed when my book is released.
You can also follow me on social media . These are my links.
Twitter @JH_blogger, Instagram @medic.mum and Facebook Listen2mythoughts.
My name is Janet Chelliah, I started this blog site under the name of ‘JH Blogger’ in March 2020. I am a mum of two daughters, Kirsty and Melissa. I am a doctor in General Practice and I am married to my husband, Neil.
I have been writing my first book for just over a year, and in the last few months I have been working with my Editor and Cover Designer. I am pleased to say that it is almost done. The title is ‘Our Family’s Journey Through Disability and Cancer’ and it has been written to share our family’s experiences in the hope it will help other families who have similar circumstances to us. Our daughter, Kirsty, who is nineteen, has Down Syndrome. She completed treatment for leukaemia in January, 2019. She is a strong and determined young lady who has her future planned. She has the best sense of humour, she is talented, kind, loving, and she has the perfect smile.
Apart from the desire to help other families, I also want to introduce Kirsty. Neil and I are so proud of Kirsty and all of her achievements. In the book I also introduce my youngest daughter Melissa, who is twelve. She is a thoughtful and loving daughter and sister, and she never fails to show resilience. Melissa often confronts life’s challenges in a positive way – she reminds me to keep positive. Together, we are a close family who really made the most of lockdown; we created our own family parties, enjoyed quizzes, created TikTok videos, and played ‘hide and seek’ in the garden.
‘Our Family’s Journey Through Disability and Cancer’ will be released in October and it will be available on Amazon and Ingram Spark. On Amazon, both an eBook and paperback format will be available, and a paperback version on Ingram Spark. Monies from the sales will be donated to CLIC Sargent and Down’s Syndrome Association (DSA). Both of these charities have already read the book, and you will find a review in the introductory pages. Clic Sargent and DSA have both helped our family over the years.
As I write this blog, we find ourselves back to where we were four years ago… almost exactly to the date. This time, a routine blood test told us that Kirsty has leukaemia again. There are no words to describe how we feel. Kirsty has once again been pulled away from her happy and fulfilled life, to a life of being hospitalised and with no control of her life. Kirsty just wants to be home with her family and getting on with the daytime routine that she enjoys; a routine she established herself to keep entertained during lockdown.
Kirsty was due to start her new college in September. Coincidentally, September is also the month for ‘Childhood Cancer Awareness’.
Kirsty has her new timetable, her clothes and face-mask on her desk, all ready to start college. Like any other teenager, Kirsty wants to meet a boy at college, one that she can call her boyfriend. She wants to start working and earning her own money. She wants to see her friends again – especially after shielding throughout this pandemic. She wants to dance again – in her dance schools and not on Zoom. She wants to learn a new saxophone piece. She wants to dye her hair pink.
We are devastated at what has been thrown at her again. She is scared and sad. However, she is still able to find a smile and tell us that she loves us everyday. Despite being sad, our precious daughter doesn’t show anger. She is tired but she never forgets to say ‘please’ and ‘thank you’ to the hospital staff.
COVID-19 is making this journey so much harder for us. Kirsty is now in an adult hospital. She is confined to a room for four to six weeks. She can only see me or my husband, as we each take it in turns to stay with her for three nights. She can’t see her sister, Melissa or any of her other friends. She FaceTimes her friends and other family members daily. We have friends and family who wave to her from the hospital car park on a weekly basis. They can’t see Kirsty, but Kirsty looks forward to seeing them.
Kirsty was shielding from March until the end of July because of COVID-19. Life had just started to get back to some normality, and now she is shielding again but under harder circumstances. She is ill, in hospital and she doesn’t have her family around her. She isn’t in the comfort of her own home or garden. She doesn’t have the energy to do her online singing, dancing , drama or saxophone lessons. She isn’t able to sing and dance, or do her make up and nails every afternoon. She isn’t able to shower herself, dress herself or wear her lovely dresses . Most of all, she misses her family and friends. She misses a good party. We miss the Kirsty we know. Melissa misses her sister. The house is quiet, it’s not how it’s meant to be.
Neil and I were able to protect Kirsty from COVID-19 over the past few months. Now, we are afraid that we have no control over what happens with her health. We do our best to occupy her time in hospital and one of us is with her all the time.
When we got the news about Kirsty’s relapse, I was in the middle of my final edit of the book. I was unsure as to how I should proceed with my book. However, I received a call from a person at CLIC Sargent who had read the book. She felt the book was one that would help others. On this same day, August 20th, Kirsty turned 19. This is what made me decide to go ahead. I want to publish this book for Kirsty, and for the families who have been affected by cancer. I also hope that Kirsty’s determination and strength will inspire those who might be struggling with other difficulties in their life, apart from cancer.
Editing my book and writing this blog while going through this journey again has not been easy. I am heartbroken. However, I know that I need to keep going with this book, whose sales will benefit charities which have been affected by this pandemic. I need to do this for Kirsty. I want to remind her that she can get through this again.
Kirsty’s positive attitude and strength continues to inspire people who know her.
Kirsty is admired and loved by so many. The love she receives from her family and friends will give her the strength to keep going, just as she did before. Thank you to our family and friends, who once again show us love and support.
I would love to hear from you so please feel free to leave a message in the comment box below.
My 12 year old daughter, M, told me last week that she wants to do ‘something crazy’! Social media influencers are apparently doing things they ‘don’t normally do’. Guess we are all seeking something different to do each day to vary our current new routine. I have to admit, I am running out of ideas but agreed we should do something out of the ordinary.
I was inspired by a friend recently. She and her family enjoyed the quietness and peacefulness of an empty beach at sunrise. How idyllic!
After much thought, we decided it was not possible to take on a ‘crazy yet safe’ challenge.
We decided instead to drive to somewhere scenic where we could watch the sunrise. Despite the easing of lockdown, as a family we have chosen to stay home and only travel out of home if necessary. However a one off early morning drive in a car to watch the sunrise seemed like a necessary thing to do after being indoors for 10 weeks.
My older daughter K who is shielding and my husband N, were quite hapy to have their normal Sunday morning lie in and not join us.
I was surpirsed at how easily M and I got up at 4am. It was definitely an unusual thing for us to do and even more so as we have hardly driven out of our driveway for 10 weeks. Seeing 2 foxes in the middle of the road next to our house was exciting enough. I was hoping to see more wildlife roaming our roads like shown on various videos recently on social media but sadly that wasn’t the case.
We drove along happily with music turned up loud. There was excitement and a rush to take photos and videos of the sunrise as I drove towards it. Photos that M wanted to share on her Tik Tok account.
We then enjoyed a packed breakfast in the car. I asked M if she felt happy and satisfied that we had done a ‘crazy thing’ and she said ‘Yes’. We must do this again, we told each other.
I felt like a ‘cool’ Mum. It definitely made my day.
After we returned home at 6 30 am, we had a chat, catching up on events of the week as it was half term and sharing our thoughts about the current ‘Lockdown’. I was pleased we had just created another memory during lockdown. I do not remember the last time I appreciated the beauty of a sunrise or a sunset. Quite often it’s a quick glance at it, as we rush out of the door for work and school. Getting this opportunity with my daughter made it even more special.
This opportunity with my daughter meant even more after going through a week that challenged my mothering skills.
My older daughter K is 18, she is at a stage she sees herself as an adult , however still has teenage qualities. I started to feel like my presence irritated her constantly and I could not find the words to make her happy. I have also been helping K with developing her ambition but felt it was thrown back at me one day last week. I felt down, teary and confused when this happened. Have I misunderstood what her ambition is? Was I subconsciously imposing things on her that she does not wish for, or had I just failed as a Mother.
I then remembered my sister telling me how the teenage years are testing times for most Mums. I just have to wait till this time passes as she discovers herself in the world of adulthood, developing her personality and opinions and moves away from these difficult transition times.
‘Motherhood’ is a word that I have never used in reference to myself as a Mother. Despite being a Mother for almost 19 years, I do not see myself as an expert. Experienced yes but still learning. The word ‘Motherhood’ had always given me an impression of eliteness and being perfect. This is not how I see myself and I think most Mothers feel this way too. In reality, although most of the time we probably feel content with our ‘mothering’, it doesn’t take much to rock this sense of security.
Motherhood in the dictionaries are quoted as ‘State of being a mother. Qualities and characteristics of being a mother’. In my opinion a vague but appropriately vague definition.
We each create our own description of Motherhood as we embark on this journey with our child/children. The definition of Motherhood also changes according to our children’s needs and stages in their lives.
Motherhood is a responsibility that Mothers acquire from the stage of pregnancy. We are nurturing our unborn child and continue to do so for the rest of the years that we are needed by our kids. However I believe Motherhood is also moulded by what we learn from our children.
Lockdown has given me the opportunity to spend time with both my daughters as they both transition into their adult years and teenage years. M, who is the baby of our house has grown and matured so much in the last 2 months. She has taken on so many responsibilities in the house and has also used this time to develop her interests. I have cherished the Mother and Daughter conversations we have had. The amount of time we have spent together was reflected yesterday when M made a comment and my husband said ‘ That’s what Mummy would say!’.
The words ‘lit’ and ‘flex’ have taken me to a new dimension. I have learnt about a new dictionary called the ‘Urban dictionary’. I have also learnt what Tik Tok is but not been brave enough to actually be in a video with my girls.
My feet have appreared in M’s first ever short film that she wrote and edited. This is now on You Tube ! I have pledged to appear in her next short film.
Despite the ‘moments’ I can have with K, I am enjoying the quality time I manage to spend with her during lockdown. Over 90% of the time K is her usual kind self. She gives me a hug several times a day and tells me she loves me. However she is also teary several times a day or gets angry. The current situation of isolating herself along with this crucial time of making sense of adulthood must be so unsettling for her. As M approaches her teenage years, I am hoping I will be more prepared, and have better understanding and tolerance.
As human beings we can easily be distracted by the negatives in life. It is hard to focus on the positives when life is difficult. I would like to remind all Mothers, including myself that we are often the targets of our children’s frustrations. We are seen as an ‘easy’ target but a ‘target’ that is perceived as non-judgemental and providing unconditional love.
I started writing this article a week ago but several things have delayed me completing it. I complete this article on #BlackTuesday 2nd June 2020. My mind is so troubled and heart is so heavy with sadness of the death of George Floyd and the handling of this case by the American Police and the American Government. Racism is rife in the 21st century and not just in America. A lot of the times it is hidden and subtle, making it difficult to prove it has happened. At a time like this we as human beings, no matter what colour, need to step up, question and make efforts to stop this horrible, sad and shocking crime. A crime that has gone on for far too long. If anger and sadness is not expressed, we will not be any further forward to supressing racism. There is never a reason to be racist. Racism has been discussed openly in our household. Acceptance of one another is a crucial quality we can instill in our children.
Motherhood to me is allowing my children to grow and learn at their our pace, encouraging them to reach their best potential, showing love and support, learning from them and growing with them, accepting our failures and our children’s failures, being there for them when we are needed, teaching them to respect and honour the diverse society we live in, and loving and believing in themselves.
It’s been awhile since I published my last blog, I have drafted it in my head several times but in keeping with the constant change in advice we are getting about keeping safe, my thoughts were conflicting each other in my head too. I felt drained mentally and found it difficult to think clearly. I however have wonderful daughters that keep me alert! I have been involved with helping them with school work, learning new monologues and scripts, filming audition tapes and helping my youngest submit four songs for her London College of Music exams.
I am not generally an anxious person . However, I have been preoccupied with the many ideas and advice we have been getting in the last week by various sources. The Government, the opposition parties, NHS England, Public Health and various leaders in Education, Health and Finance. The easing of the lockdown hasn’t made me feel liberated again but instead made me worry. I worried about how such vague and conflicting messages would be interpreted. I worried about the spread of the virus getting worse again and the numbers dying increasing. Yes the NHS might cope like they did, but it will again expose health professionals to the infection. Will we also risk going into lockdown in the summer months?
I have felt a sense of unease posting my opinions on social media recently. I have continued to post photos and videos of the fun stuff that we as a family are enjoying in lockdown at the moment. I feel we are at a level where we can’t quite say what we think or feel about the decisions being made without fearing to be accused of being ‘right wing’ or ‘left wing’.
I personally haven’t been criticised for what I believe in, but have noticed the numerous unpleasant comments made towards other people who simply state their opnions. It has bothered me that I may be seen as a ‘troublemaker’ or one who is never satisifed if I voiced my opinions and fear.
As British residents living in a democracy, we all have the right to comment on how the government has dealt with this crisis. There is an argument to forget the mistakes that have been made and move on. However as we all know without accepting, acknowledging, analysing mistakes and making the relevant changes, mistakes will continue to be made.
I therefore would like to share with you how I perceive some of the decisions that have been made. I am not saying the government has got it wrong. However I am saying that this is the time to concentrate on what could be done better. Though numbers are much lower, people are still dying , there are still high numbers of cases that are positive despite us not testing those who have no symptoms.
It wasn’t too long ago when nursing home were told they did not need to take extra precautions in protecting themselves and this involved care workers and their residents. ‘The science’ informed us via the government that the elderly were vulnerable but no specific advice were given to Nursing Homes. I remember Nursing Homes taking an independant decision to close their doors to visitors. Some staff made the admirable decision to lockdown with their residents to protect the elderly as well as their own families. However they did not realise they would find themselves looking after residents who were covid positive. This was due to patients being discharged back to care homes while they were still covid positive. Also residents who were not admitted but were unwell were also sent back to care homes. Were care workers warned about this situation to allow them to isolate an individual and protect the others?
Denial and not reviewing what’s been done so far and taking the appropriate steps to rectify imperfect decisions, isn’t the way forward. Nor is rewording sentences to make something sound politically correct the next time a speech is made after criticism from the public. There is also a recurrent theme of not answering questions asked by reporters, no matter how many times they are asked. Answers are given in a repetitive way quite often using words like ‘we are following the science’ and ‘it has been a priority since day 1’- following that no further detailed information to support comments are provided either.
The photos in the media in the last week of crowded buses, parks, beaches and country villages, made me feel judgmenatal of these individuals. I was angry and thought it wrong. Why crowd peaceful towns and put their residents at risk , once again for the freedom of movement?
The government supposedly clarified Boris Johnson’s speech on Monday in a press statement as below.
A No 10 spokesman said ‘the public can stay alert by “staying at home as much as possible”, “limiting contact with other people” and keeping two metres apart where possible’.
They also say,
“We can control the virus by keeping the rate of infection and the number of infections down,”
“This is how we can continue to save lives and livelihoods as we start to recover from coronavirus.
“Everyone has a role to play in keeping the rate of infection (R) down by staying alert and following the rules.”
Politicians also commented on the media that the British Public are able to interpret the message of ‘Stay Alert’ in a sensible manner.
However there were hundreds of fines issued by police this weekend in North Yorkshire. This is probably just one example. Why change ‘Stay Home’ to ‘Stay Alert’ if the main message is ‘Stay Home’
The day after the Prime Minister’s speech on staying alert, various police groups released a statment saying it was going to be difficult to police social distancing. ‘Stay Alert’ is a message that could be interpreted in so many different ways.
I still don’t understand why we cannot socialise with family members by social distancing in their own gardens. Instead we should socialise 2m apart from a family or friend in a park where you are less likely to be able to keep a distance from others who are out.
The list is endless. A few weeks ago there were reports that showed the BAME population and of those of low socioeconmic status are at higher risk. However no guidance have been issued on how to risk assess the BAME population, and how to protect those of low socioeconomic status .
Children are at low risk of developing covid 19 and so the decision has been made that educating the younger ages and those in Year 6 for 5 weeks before the summer holiday will be beneficial to families. The Teachers’ Unions and the British Medical Association however disagree with this. More confusion is raised again in society.
We are all going through the same crisis but as we know we each have different circumstances. It could be social, physical and mental health, finance, being surrounded by loved ones or not and jobs. Therefore how this pandemic affects us and how we cope ranges through a very long spectrum of individual experiences.
Right wing or left wing, red, blue, yellow or green, what we need is a government that is honest, consistent in their advice, admits mistakes, apologises to the families of health care workers and care workers for the lack of PPE, apologises for lack of consideration given to Nursing Homes at the onset of this pandemic and lack of widespread testing with a quick turnover of results- all this should happen before further easing is made.
As a Mum and Health professional, staying alert has been part of my life. Staying alert to the unwell person that comes in, staying alert to what is not being disclosed by a patient that might be helpful in identifying risks like in domestic abuse or hidden medical problems. Staying alert to our children’s mental, physical and emotional state. Staying alert to the safety of our environmenet.
As a General Practitioner, I stay alert for symptoms that patients may have that may indicate the virus- however, I am not able to control it as there isn’t an antiviral or vaccine that we have that can control it.
We should all be comfortable with voicing our thoughts and opinions during this difficult time, if done in a sensitive way of course. We are a democratic society, a progressive society, an intelligent society, therefore a society that shouldn’t be threatened when opinions are challenged. Those in power should favour open conversations with other experts whose opinions are crucial in reducing transmission rates and death rates.
We often say health is more important than wealth- if we are not a healthy nation, how are we to preserve our economy.
Good morning everyone. Thank you for visiting my blog page. This is my first blog written in the month of May. I started blogging about this pandemic as we went into lockdown at the end of March. A blog sharing my own thoughts and experiences.
Blogging about this pandemic definitely wasn’t on my ‘to do’ list. I am sure most of us have ‘lists’ that linger around for ages and we get reminded of them at the start of a New Year! It sometimes takes a life changing event to make us step back and make time to do the things we are passionate about. Our busy lives sometimes makes us unprioritise doing the things that really matter.
Over the last few years, I have been encouraged to write by family members and friends. I am sure it isn’t because they think I am a good writer! It’s because of an experience that my older daughter K went through 4 years ago. K is 18 years old now but a week after her 15th birthday she was diagnosed with Acute Lymphoblastic Leukaemia. K went through a horrendously traumatic time. It was devastating to see her struggle through her treatment, that involved various chemotherapies and she experienced several serious side effects that went along with it. She spent many weeks/months of her life in hospital.
Her social and school life stopped for at least 18 months. She isolated herself for most of that time as she needed protected from the various infections that she could have easily caught by seeing people or leaving the house. A very similar scenario to what she is experiencing now but this time experiencing it with the global community.
Every single day of K’s illness, I found myself reflecting, analysing and vocalising the experiences subconsciously to myself. I also felt the need to read about how others coped . K also has Down Syndrome. Her condition made her experiences different sometimes. She couldn’t have one of the drugs that they gave to the other children and her threshold for being admitted into hospital was lower. I contacted the Down Syndrome Association asking if they knew a family who had been through what we were going through. A Mum kindly contacted me, she had gone through it with her son over 10 years ago. Her’s was a positive story and I appreciated her getting in touch with me. I needed to hear another family’s story.
As we reached the end of K’s treatment phase and she went into remission, I felt a need to put my thoughts in writing. I needed to go through it all in my head and somehow make sense of it. I decided to take the advice of family and friends who asked me to write 3 years before. I told myself it didn’t matter if no one reads the book. However if just one family can find something useful from it that would be great. Hopefully one day my book will be there for my daughters to read, if they ever needed to look back at ‘those years’. Writing the book was a way of me consolidating those 3 years and boxing it up.
As coronavuris hit the UK and we went into lockdown, I somehow couldn’t help but compare our current situation to our past experience. Again I felt the need to capture my thoughts in writing and this time as we experience this very unusual way of living.Writing in the last 5 weeks has helped me cope with the stressors of life we currently face.
My current anxieties are around keeping my family and myself safe and praying our family and friends are safe. What upsets me more than anything is when I see my daughters look sad and when I hear the stories shared by families who have lost loved ones. They each have a story to tell and they want us to hear it.
We are a family of 4. K is probably the person in the family who is most affected emotionally by this. She cries at least once a day when we talk about her friends. Before lockdown she cried about events that reminded her about the time while she had Leukaemia.
However, I think she is coping well and is still her joyful and smiley self most of the time. She is also keeping herself busy and is having the time to be creative.
When K was ill, we sought advice from a psychologist. We were worried about her low mood during treatment. We were worried she wasn’t able to tell us how she felt and what she thought. K spent several hours with the psychologist whom she had a great rapport with and who understood her well. The psychologist addressed our concerns. After a few sessions, she then pointed out to us that K’s reaction was normal. Yes, she cried and yes, she looked down and sad, but it would have been more worrying if she didn’t confront her emotions and while doing this learned to deal with it at the same time. It was making her emotionally stronger.
This pandemic has been compared to World War 2 by some. I heard a comment recently that said at least people could see each other and touch each other in the blitz. I personally don’t see how we can compare the two. There were almost 500,000 people that died in the UK in WW2(Civilians and Military) and along with it came the constant fear of being bombed at any time of the day, severe food rationing, no homes to live in, families being separated and all this went on for 6 years. We remember the victims of VE day this weekend with great respect.
I am not saying we are not going through a terrifying situation now as we definitely are! Our enemy is a deadly virus that has taken away at least 30 000 precious lives in the UK. We can help to reduce the numbers dying each day by staying at home. There isn’t a cure but there is hope for it. We live in a world now where science seems to have the answer for most illnesses. I am sure science will find a solution one day.
There has been a lot of focus and concerns around the mental health of the public at the moment as we move into our second month of lockdown. The restrictions on meeting up with loved ones and concerns around the coronavirus has stirred up anxiety, low mood and depression in the community. I believe anxiety and depression is experienced in so many different ways by people. I think it is important for people to recognise and acknowledge their own symptoms.We shouldn’t fear it. Only by recognising it can we challenge it and learn to cope. We will all do this in our own ways. It is only normal to feel anxious at this time. However we will experience it at different levels . Some of us will be able to manage it ourselves and some of us will need help from loved ones or professionals.
I am fortunate to be isolating with my family. I have their support. We look out for each other and comfort each other. Writing my blog has also helped me unwind my thoughts and fears.
I don’t readily express my emotions to others in conversation. However since writing I have found it a more comfortable way of dealing with my emotions. I have discovered how important it is to communicatre our fears and anxieties with others. Sharing life stories, whether it be via conversations over the telephone (Facetime, Skype, text ) or by writing or reading, is so important. We don’t only gain support or give support but we can learn from each other.
Below are some of the charities people can contact whether they have family and friends support or not.
There isn’t a single type of advice that can be given to everyone on how to cope, as people have different life experiences and circumstances.
We also need to remember those who are Shielding. As the lockdown is released and people start trying to live normally, this group of individuals will probably continue to be shielded and will need us to look out for them. There will be several families needing to keep themselves healthy to protect their shielding relatives. This group of individuals are not only extremely vulnerable from a physical point of view but from a social and emotional side too.
Remember to seek and empower your inner strenghts as we celebrate VE Day as a nation this weekend. This will pass and one day it will be history.
My family and I are making scones and we are planning to have a picnic in the garden. Hoping the sun shines too! I hope you all manage to have a happy weekend if you can.
We apparently have had the sunniest April ever recorded since 1929. What a year to have had the sunniest April! Typical isn’t it? A month when we have been in lockdown! We have missed out on a glorious and warm Easter Break. Nevermind…
As I write this, I am thinking of the positives that have happened in April. I feel April has gone by quickly. It’s a month now since I started my blog. This is my 11th blog. I appreciate all the feedback I have had and thank everyone who has read one of my posts.
I have been trying to write this particular blog for 2 days . I have written several versions. However have deleted them all. I have decided there really isn’t much to say.
I just feel sad when I think of the last month. Yes, I can list the many positive things that have happened this month. However, I cannot help thinking about the many who have lost their lives, the many who are fighting for their lives now and the many who are worried about their lives.
We have been told we have reached the peak number of deaths. However, the death rates are much higher today than ever as the number of deaths recorded out of hospital are reported for the first time. It’s sad to think there are probably thousands more dead from this virus, but not counted in the numbers. They might be dead and gone from this life, and ‘a number’ to some of us, but they probably have families with unanswered questions and wanting answers desperately, so they can grieve .
There is pressure on the government to come up with a plan to when lockdown is released. There is apparently already more activity on the roads . People are ‘releasing’ themselves from lockdown in their own ways. Police are being abused when people are questioned. The ability to be free seems to matter more than the need to ‘save lives’
I personally find the advice on ‘going out’ conflicting.
This week we also paid a minute silence to the NHS workers who have died. The news channels report at least 100 who have died. A healthcare Facebook page reported at least 119, and this was a few days ago.
Looking at the NHS England Website, there were 2 137 hospital deaths at the end March.
There were 21 678 hospital deaths on April 28th and over 26 000 deaths on the 29th of April in total. (including those who have died out of hospitals).
I don’t mind having my freedom of movement taken away from me. I just want us to help each other and protect ouselves by staying at home. I also want all key workers, those in healthcare or not, to be protected and respected. To be treated as human beings and not soldiers or martyrs.
When lockdown is released, I don’t think I will be jumping for joy. Instead I will have to adapt back to how life used to be. I would also be worried about a second wave descending on us.
I pray and hope May is a better month, sunny or not.
It’s our first day back to home schooling and my husband has also returned to work after a well deserved Easter Break. An anxious time to be returning to work as a doctor. When he left the house, both daughters shouted out ‘Stay away from the Virus’!
My daughter M aged 12, has online learning from 9 am to 3 30pm with only a break for lunch and snack. I just see her at lunchtime till she finishes. She looks forward to seeing her friends during lessons on Google Meet.
K, my other daughter, has to be persuaded to do some learning after her long break. K has no live teaching so it’s up to me to help her! K has never liked me teaching her since her infant days.
School work for K was sent in the post and we have been attempting the work slowly. However K is not impressed with my teaching and I somehow am not making the lesson interesting enough.
I finally got K motivated when I found a Maths lesson taught by a young and fit looking male who also danced and sang while he taught! Perfect! Before we knew it we had been learning for 2 hours!
I now have the challenge of finding similar videos for the other subjects!
There have been several funny, messages and videos on social media about getting ‘Back to school’ today.
I noticed an article in a newspaper a few days ago about a Mum who was getting irritated by people encouraging others to use this time to ‘learn a new skill’. She is a Mum that works full time and needing to work from home as well as educate her children. She felt she had no time to learn a new skill and people should stop posting such messages. I felt sorry for her. I work part time and it can be stressful enough getting K to do a little school work.
I also noticed the media reporting on the low numbers of children logging on to home computers. Sadly there are families who do not own computers or have to share computers with their siblings. or with parents who are working from home. Some families might also be using this time to provide alternative teaching. There maybe families who are struggling at this difficult time in several ways and so finding it difficult to find the time to fit in homeschooling.
The media also indicated that children are ‘missing out on education’ and are ‘lagging’ behind. This is something I don’t quite understand. We are only into our 3rd week of home schooling since lockdown. We have had 2 weeks of holidays and today is most students’ first day back. How is it possible to be already lagging behind and what are we comparing this lag to?
There was also a headline in a newspaper that said schools may re-open in 3 weeks. Are we forgetting we are in the middle of a pandemic? The ‘deadly virus’ still lurks around and will do for a while. Why are we rushing our kids back to school? Thankfully this isn’t the case .
When I was growing up, school and education was important to me. I advise my children on the same importance of education.
I also encourage them to explore their interests and hobbies in music, drama and dance. It has definitely helped build their confidence and help them feel good about themselves. I think it is important to help develop and improve their interest/talents. I think the artistic industry helps with self expression and communication. A skill that will come in useful for public speaking in the future. Music has been shown to help with brain development, therefore improving learning ability.
With busy lives after school hours, my daughters have learnt to organise themselves as they juggle school/homework/exams. Joining various clubs and groups helps expand their friendship groups. Dance is also their way of exercising.
I think whether we realise it or not we are all ‘learning a new skill’ while in lockdown. We are also learning from each other and learning about each other. We are learning to adapt, compromise, manage our anxieties and unlock our creative sides.
We may be building current relationships and developing new ones in a way we never have before.
My daughters are finding themselves involved in complicated conversations about the pandemic and learning to make their own judgements just by listening to the news.
Their sibling relationships is blossoming as they spend more time at home together now than on a normal school day. They are building memories that they can share one day when they are older. A moment that changed their world but created a time when the family spent quality time together at home.
They are learning to express and understand new emotions that they are feeling now as they go through a situation that we do not know much about.
Three weeks ago, M suggested we started a ‘Theme Night’, where we dress up to a theme for dinner. I am ashamed to say that I am one of those Mums that buys rather than makes outfits for school dress up days. Our themed nights have been fun as we source clothes and props around the house that we can put together. ‘Unlocking my creative side’.
During this pandemic, children are strenghtening their resilience, exploring their creativity, not just appreciating but valuing family life and friendships, and absorbing the importance of kindness and responsibility.
The older teenagers are probably using this time to reflect on their future role in society as they watch and admire the many heroes and role models helping communities and individuals.
I therefore think we are all subconsciously ‘learning a skill’ and providing a learning environment for our children and ourselves, without even switching on that computer.
Reading about and sharing each others’ new found skills and coping strategies I think is vital in supporting one another.
After almost 3 weeks of being indoors, M, my youngest daughter and I decided to take a walk just outside our house. My oldest daughter K, is shielding from Covid 19 and is not even allowed out of the front door. K was upset to see M and I leave. I felt bad about it but explained to her that it was a short walk and in a few months she could come out too.
The last time I left my house before today was March 20th. The last time my children left the house was March 18th. The country went into lockdown on Match 23rd because of Covid 19. I was meant to be at work on March 25th but we had to self isolate as M had mild symptoms. We are also further restricted by K needing to shield. We have kept ourselves busy at home and using this time to do the things we have always wanted to do in the past, and wished we had the time.
Although we were allowed our 30 minutes of exercise when our 14 days ended 5 days ago, we did not feel the need to go out. The current government guideline is to stay at home. Only those who can’t work from home can leave their house for work. Also there is an allowance to exercsie for 30 minutes a day.
M and I felt awkward and tense walking out of our gates this afternoon. I had already talked to M about distancing ourselves from other walkers and to not touch anything outside our own grounds.
My husband N also advised us on what routes not to take; the narrow lanes where it is almost impossible to distance from others.
Being obsessive is not in my nature normally. But I wanted to do the right thing.
I was quite shocked at the number of people out and about walking, jogging and cycling. They were not at a distance. Cyclists passed each other with close proximity, joggers leisurely jogged past other walkers and some walkers behind us walking at the fastest pace approaching us at close proximity.
M had to keep away from someone and without realising it brushed herself against a lamp post and she hadn’t even realised it till I told her. We immediately washed her top and washed her hair when we got home.
There have been various reports that say that if you are jogging or cycling or moving at a fast pace, you could easily walk into droplets in the air that are infected with the virus from a previous jogger/walker/cyclist that sneezed or coughed into that air. The virus itself is not airborne but can persists in droplets for a short period of time.
The coronavirus is known to survive on hard surfaces. So touching a lamp post while you catch your breathe, sitting on a seat in the park for a rest or opening a bin to throw rubbish, isn’t what you want to do. Then there is the shoes, we left ours outside of the house so not to contaminate the house.
That walk for fresh air seemed so unnecessary to us. We are fortunate to have a garden and we can get fresh air and relax in our garden safely. We exercise daily in the house and I feel myself getting fitter.
However there are several people who do not have the privilege of a house with multiple rooms or a garden that is private. These are the people who will beneft from getting their 30 minute exercise outdoors.
There are also the families who will struggle to keep their children in doors, eg those with autism, Attention Deficite Disorders or Anxiety problems, and also adults who have claustrophobia or anxiety who will benefit from getting out for 30 minutes to help their mental health.
There has also been a significant rise in domestic violence since the lockdown. Getting out of the house may be the only way to move away from a situation.
The Government today addressed the issue of Domestic Violence and released this number for victims ; 0808 2000 247 (National Domestic Abuse Helpline) or call 999 if in immediate danger and press 55 if you can’t speak but need urgent help.
There is also the NSPCC ( National Society for the Prevention of Cruelty to Children) Telephone 08088005000 or email email@example.com, that can be contacted for help.
For those who can stay indoors comfortably for a few more weeks, have a garden and room in their house to exercise in, this is probably the best option to #StayHomeStaySafe.
This will create a safer and quieter environemt for those who desperately need to have this daily 30 minutes of respite.
I watched Horizon on BBC 2 This week and recommend it as it explains why it is so important we stay safe and protect ourselves, each other and the NHS. Please click on link below.
As a family we have decided to not walk out of the house if it wasn’t for food or work.. We have the benefit of technology to keep in touch with close ones and to keep ourselves entertained at home.
I strongly feel the need to protect our health workers and other key workers who have no choice but to leave their homes and families to go to work.
I am sure no health worker or key worker wants to be made a hero or a martyr. They all will fear for their safety and health, and the lives of their close ones.
Clapping the NHS is a good way of showing appreciation. However it isn’t going to ‘help the NHS’. Personal Protective Equipment, the public staying at home and thinking of each health worker as a human being is what will help the NHS.
Take care every one. Happy Easter. Let’s keep looking out for each other.
I am posting a shorter post today as I am a bit preoccupied . I guess we all have days like this and I only think it normal.
I believe it’s healthy to acknowledge how we feel. It may not work for everyone but for me a good cry gets the worry out and if not I just sink. I hate the feeling of sinking.
I have been wanting to write a blog about the theatre for a while. Today seems to be the day.
A photo memory popped up from Google Photos yesterday. Two years ago we watched Wicked The Musical’. I miss the theatre. I miss seeing the many talented actors, singers and dancers on stage.
Going to the theatre is something I have done for 30 years. A theatre trip is always exhilarating . I particularly like musicals. Probably like my daughters I love music and dance. Our trips to the theatre have mainly been as a family but I have enjoyed many shows with my female friends.
I remember being shocked when I heard Broadway was shut. Just felt like such an unlikely thing to happen and before we knew it the West End shut.
The industry is struggling at the moment. Several talented people who have put so much work in to their careers and fighting their way through such a competitive industry are now out of jobs.
I was meant to see ‘Six’ The Musical this month. M was so excited when I booked the tickets. She excitedly told her history teacher that she was watching the musical, however I think he did not fully understand the relevance of that comment during a history lesson.
We can support the industry in many ways. Buying a gift coupon for someone’s birthday, donating cost of tickets to the theatre for cancelled shows or there might be an option to move the show dates on to future shows. Also celebrating the end of the pandemic with a theatre trip.
There are also several free online screenings available.
I have included the links below.
If you enjoy the theatre like I do, hope you get the opprtunity to enjoy a show in the comfort of your home.
Please feel free to coment with other links I have missed out.
I dedicate this blog to My Family and Friends who have given me their friendship at several stages of my life.
As I was growing up the people who gave me their friendship were my immediate family, cousins and school friends. I still reminisce about my childhood days especially when I hear music from the 70’s and 80’s. Great memories of us creating discos in our own homes and staying up till late at night chatting.
As I left home and moved to a different country to do my degree, my friends were my University friends. Most of us lived away from home and we became a family. Till today we still are a family and distance doesn’t stop us from being part of each other’s life.
As I moved into working life and lived in the UK, my first friend/colleague is now my husband for 22 years. We have fond memories of this time that we still giggle about. We actually worked well together in a hospital setting. We share these stories with our kids..’How Mum and Dad Met’.
As I worked in various cities in the UK my friendship circle expanded. As I moved away I missed the friends I was leaving but always did my best to keep in touch.
As I had children, I was fortunate to get to know even more people through toddler groups, church, schools, dance and drama groups, Speech therapy groups and our local Down Syndrome Association.
I have been part of my church community for 16 years. I don’t attend church as often as I used to but everytime I attend a Sunday Service and meet up with my church family, I come home refreshed and contented.
My friends were a great pillar of strength as we went through a difficult period of our lives a few years ago. Support was shown through so many ways; texts, emails, cards, facetime, telephone calls, gifts,visits and through food that was left at our front door for years till we got our routine back. During this time we made new friends who we met at the hospital. They were going through extremely stressful times too and we often think of them and send them our love.
Last night I had a text from my friend whom I haven’t seen for 5 years. She messaged me to say she is enjoying my blog. I felt honoured that she had taken the time from her busy life to let me know this. Her words made me realise that she hasn’t forgotten who I am and I felt pleased that after all these years I am still the same person inside. I want her to know it meant so much to me.
My university friend of 25 years, texted me 2 weeks ago to remind me to wear my glasses and not my contact lenses during the pandemic; to protect my eyes from any source of infection. How thoughtful of her to think of this and to take the time to remind me of this. She herself was self isolating with her family.
I started this year saying I have to make time to see my friends.
A month ago , I had a reunion with several groups of friends and my sister. I was away from home for 2 nights! The last time I was away from the family for more than a night was 4 years ago. That weekend meant so much to me as I reconnected with friends and family. It was also the weekend that my sister told me ‘You need to write…’. It wals also International Women’s Day. It was a weekend that was meant to be. I left thinking we must have this reunion again in 3 months.
2 months ago I spent the day with my other sister. I went to an exhibiton to see her art work and a short story she did that was on display. I was so proud of her. We had lunch,chatted and shopped. I left thinking, we must do this again soon.
I also managed 2 trips to the cinema with a friend, brunch with another coffee with another and was looking forward to watching ‘Riverdance’ with another friend this month. Sadly this isn’t happening now.
I still have Christmas presents that I hadn’t given to 2 other friends that live just 90 minutes away from me! Wish I had made the effort to see them before Christmas.
I was looking forward to my sister in law visiting us last month, we look forward to her visits every few months. We have a lot to catch up on when I see her next. She makes me laugh.
There are also my ‘social media’ friends, Mothers of Children in the entertainment industry that I have got to know. A group of women who are always supporting each other and exchanging ideas. A group of women I don’t meet often but enjoy reading their posts and appreciate them reading mine. A group of women that help each other in the entertainment industry.
I miss the ‘Dance Moms’, we sit around on a Monday evening and share our stories and worries as our kids have fun dancing. Hope it’s not too long before I see them again.
Sadly it’s going to be awhile before I see my friends again. My daughters say the thing they miss most is seeing their friends.
As my daughters grow older we are developing a close friendship. I am quite often surprised when they read my thoughts and feelings, and offer mature advice that I wouldn’t have thought of.
I hope my daughters will be able to continue their friendship with their cousins and friends as years go on.
It’s great we can all connect with friends and family via technology.
We share funny stories to lift each other’s mood. We also share our worries. We seek comfort and give each other virtual hugs. We think about each other.
‘Don’t just tell people that you love them-show them.And that means showing up. It means being truly present in the lives of the people you care about’ (Michelle Obama).
(Thanks friend F for giving me this book of quotes for my birthday.)
Dear friends, I appreciate each and every one of you . If I am ever slacking as a friend, please just give me a virtual kick in the b***, and shout ‘WAKE UP’!!
I have chosen the above title as that was the theme for this years’s Down Syndrome Awareness Week (16th March to 22nd March).
‘All people with Down’s syndrome should have full participation in decision making about matters relating to or affecting their lives.’-DSA UK
This theme is particulalry relevant to our daughter K this year as she finishes school in June and has chosen the college she would like to attend. College would be 3 days. I was in the midst of looking around various clubs that she could access over the summer and the days she isn’t at college.
She is also keen to get various work experience and hopefully get into employment.
Families of people with disabilities have been campaigning for the voices of their children to be heard. As like every other young person, people with a learning disability are capable of making choices , whether it be what they would like to eat, what they would like to wear, what they choose as a hobby , to making big lifestyle decisions in relationships, independent living and employment.
December 2019, was also an opportunity for K and her friends to vote in the general election. Families exchanged photos of their kids going to vote. A moment of pride for these young people and their families.
The ‘We Decide’ theme is also featured in a video produced by the National Down Syndrome Association on Facebook . This was released on March 20th. It shows various young people making choices in their daily lives. A reminder that we live in a democratic society and we all have the ability to make the correct decisions for us and our families.
It’s ironic that the Awareness week ,with a theme of ‘We Decide’, was followed by a week of lockdown due to coronavirus. Although we were expecting it, it would have scared us thinking we will be loosing our freedom to perform our daily routine ; going to work, going to school, going out to the cinemas, eating at our favourite restaurants, popping into the shops for milk or meeting up with friends. We have all lost our freedom to make the same day-to-day decisions that we made a week ago.
I think we would all agree that the groups of people mostly affected by this will be the elderly, the vulnerablen ( Adults and Children), those with mental health problems, those who live on their own , those who have lost their jobs ,the homeless, families caring for children with high needs and many more. These are the groups of people who probably didn’t have the privilige to feel free to do what they wanted day-by-day even before lockdown. A group that probably wished their lives were different. And now they are loosing any stability or freedom they had in their lives. Like the visits to day care centres, weekly lunchtime clubs, walking to the local shop to get a paper or visiting their usual place of worship.
Some people who need carers may not even have the choice of who comes into their home to help them, as several carers are also self-isolating due to illnesses themselves. As we get older we like to hold onto routine more, it gives us a sense of being secure and preserves dignity.
We also have the A- level and O- level Students, who have been working hard towards exams that would determine their future. They have encountered one of the saddest times in their lives as they hear they have no other opportunity to get the best results they can in their exams.They are now worrying if this would make it even more difficult for them to get into their University of choice and do the course of their choice.
Families who made summer holiday plans are not able to go ahead with them. They have no choice but to spend their holidys indoors
Workers are encouraged to work from home. A new system for many as they try and work out new IT systems and change the way they work or trying to work while looking after their kids and then there is home-schooling to fit in.
Key workers going to work are finding themselves working in different areas and having different responsibilites.
Teachers are taking turns to go into school during the Easter Break to look after the children of key workers or the vulnetrable children . A way of working they never thought will happen.
We are all making adjustments and making decisions we wouldn’t normally make. But we have no choice. However in our heads we know this is a temporary plan and we will get our lives back when it is over. We can be autonomous again.
When this happens, we must remember the people who wouldn’t have friends or family visiting them as they never did anyway, vulnerable kids who will start worrying about the long summer holidays, the homeless being out on the streets again and the many families who would have lost loved ones.
Let’s appreciate the lives we lead now and make the most of it. We can Decide how we spend our days now. Let’s try and have fun but yet reach out to the people who might be finding this lockdown harder than us.
Since my last blog the country is now in Lockdown! My husband and I being health professionals were still at work. Unfortunately, we are now housebound for 14 days. M started with a dry cough and runny nose 4 days ago, the day after lockdown . It was not easy trying to decide if she fitted the criteria for self isolation. Under normal circumstances I would have said ‘It’s just a cold…’. However this ‘cold’ now could potentially be a ‘deadly virus’. Work is now on hold for 14 days. We felt a sense of guilt but had to remind ourselves that we were being responsible, following guidelines and helping the NHS.
Poor M is now in lockdown in her own room. The only way we can distance and stop spread within the household. Guilt sets in again wondering if we are doing the right thing. M is a sensible 12 year old who understands her sister is at high risk and her parents need to be well to look after the family.
Thankfully M is having lessons online from school daily from 9 am to 3 30pm . This seems to take up most of the day. She is also using this time to do work-out sessions in her room, practising her drama and singing , watching Netflix/Disney Plus on her computer, reading, using social media and Facetiming her friends. I never knew Instagram had work out sessions! Gone are the days of work out DVDs ! (or Videos!)
I am the only family member taking food up to her room and spending time chatting to her about her day , checking she isn’t emtionally compromised and her symptoms have not worsened (Cough not worse, no Fever, no Anosmia, not Breathless). She is probably reciting this in her sleep.
Sadly I have a mask and gloves on while we do this. We have also been texting and facetiming each other. K gets really excited when she Facetimes M, as she can watch herself being cheeky with M. M sometimes stands at the top of the stairs so that Dad and K can say hi. It’s also the time when a quick amazon purchase request is made…it’s normally a yes from us.
Day 3 of isolation was also my Birthday. N and K did their best to make it a special day, I felt spoilt but missed M. I missed her. I longed for a hug and a birthday kiss from my family but we have to be socially distancing and at least we are all in the house together.
M also looked upset that she wasn’t able to celebrate my birthday as how we normally do. I felt empty but no words can describe how proud I am of M. She is the most sensible, resilient, caring, hard working, considerate 12 year old that I know. But I am biased! She is determined to ‘contain’ herself in her room and not put her family at risk.
M was the last person I expected to be in isolation. I was preparing M to look after K and herself if Mum and Dad got unwell. M has a book of recipes and lists of things she could do if Mum and Dad got ill. We have a box with sweets, easter eggs for Easter Egg hunts, biscuits and easy to open cans if Mum or Dad were unwell and we had no fresh food to cook. M also has also been cooking for us on the weekends practising her cooking skills if Mum or Dad are unwell.
I am sure like you all, our isolation days have been busy! Cleaning surfaces, taps, light switches, running the washing machine and dishwasher everyday, as well as washing our hands several times till our skin is drying out! (Reminds me we may be running out of hand cream!)
We are also obsessively cleaning every package that comes into the house from outside. Wearing gloves as we do this and discarding packaging immediately. Recycling still as much as we can!
We are still needing to home school K and encouraging her to keep fit with PE Joe and Leilah Isaac on Youtube.
Isolation days have also been a great opportunuty to keep up with family and friends. I have spoken to rather than texted family and friends more this week than I have all year.
Then there is the numerous ‘amusing videos’ being shared to lift spirits . When we receive one we immediately want to share those videos to several whats app groups and friends/family, even resharing it back to the people that sent it to us as we eventually forget who sent it in the first place.
Catching up with the latest news on Covid 19 on Television and social media has been overwhelming too but needed to be done. I almost felt irresponsible as a British citizen and medic if this wasn’t done and shared.
There isn’t enough hours in the day to do it all! Not even in Lockdown. How can this be? How did we find time to work in the last few weeks!
We must just be a society who without realising it, seek out gaps in our day and then quickly fill them up with further events/activities. We are subconsciously wanting to progress in our lives and open ourselves to new experiences.
We are probably also a society that needs routine to get our day going. We need to keep busy to feel useful. We need to be doing something every minute of the day, even if it means picking our phones up to catch up on latest notifications.
I think it’s great we are all able to keep life going no matter what the circumstances are. This helps with our physical and mental health. It’s good to use this time to take up a new hobby, learn a new language, write a book or even start a blog! It’s good to challenge hidden talents and to think out of the box. It’s good to be creative.
However I think it’s also Ok to be a couch potato and to catch up on Box sets of Friends, Glee, Luther. It’s OK to sit and watch the kids playing. It’s Ok to have a Pyjama day mid week.
I notice this morning many churches are now streaming live morning services too which I think is so important for all of us whether we are regular church attenders or not.
We are fortunate to be isolating with technology, entertaining us, informing us and connecting us.
Technology has definitely made M’s week go quickly. It gave her time with her phone, ipad and computer. No time restriction made. She deserved it
We can’t wait for M to come out of her room. I think I might break the rules of social distancing and give her the biggest hug ever before I take her technology away from her for a few hours!
M may or may not have Coronavirus, but it somehow feels like a trial run when and if things get worse.
This photo of my daughter K was taken on Mother’s Day. We celebrated it in the simplest manner as most Mums did this year. I am J, a Mum of 2 daughters K, aged 18 and M, 12, wife to N and I am a health professional. This is my first blog on my first blogsite.
I have written a couple of articles in the past that have been featured on social media and a magazine. I am also in the process of writing a book about another life changing experience we encountered a few years ago.
I have now decided to start a blog as we see ourselves being drawn into worrying times with Covid-19. A situation where no matter how much we do to protect ourselves and our loved ones, no matter how we educate ourselves about it, no matter what age or how healthy we are, we could still be infected with this virus.
My family and I have been extremely cautious in the last few weeks as we noticed the situation in the UK escalating. Washing hands, cleaning surfaces, social distancing, creating a room so that if one of us developed a fever/dry cough we could isolate ourselves and teaching the girls how to cook for themselves and to be even more independent. We have been preparing for a life indoors for a few weeks now. We now find ourselves in the midst of a Coronavirus Pandemic.
My oldest daughter K is a vulnerable adult, with underlying medical issues and Down Syndrome.
The girls have always lead a sociable life attending various after school clubs and meeting up with friends. They also love school. N and I have busy jobs and when not at work, as most modern parents, we are busy with home life.
As this crisis was getting closer, we took an independent decision to take on Social Distancing. We avoided crowded shopping centres, supermarkets and also started online piano and singing lessons. We spoke to the girls about how to protect themselves; we stopped meeting up with friends and encouraged face time. We were avoiding unnecessary contact with people. Work and school were the only reasons for leaving home.
We were relieved when schools closed as we felt that would definitely prevent spread with the virus even though children may have mild symptoms or none at all.
Our first day of home schooling went well. The idea of online schooling with teachers teaching from their own home was an exciting experience for M.
Being 18, K normally enjoys spending time on her own, or with friends. I however managed to spend time with her yesterday trying to help her get into a routine for the next few months. She loves routine. She loves school. I had to make her understand that it is now our routine to do school work at home. Thankfully it was as successful as it could be.
However what I did not expect was a text saying she is one of the 1.5 million people that fitted the ‘Extremely Vulnerable’ Group who needs shielding for 12 weeks. This meant we needed to make even more changes in our lives to protect her. The guidance is much stricter and it is a scary thought that my 18 year old is at the highest risk if she gets Covid 19.
Shielding is a practice used to protect extremely vulnerable people from coming into contact with coronavirus. The Guidance states..
You are strongly advised to stay at home at all times and avoid any face-to-face contact for a period of at least 12 weeks from the day you receive your letter. Please note that this period of time could change
There is also further guidance on how to manage ‘shielding ‘ one self if they live with someone else eg not sharing a bedroom/bathrooms, others washing their hands regularly, limiting time spent together in shared spaces, regular cleaning of surfaces, eating in their own room, using separate towels etc, the list is long but all makes sense.
K lives in a home with 3 other family members, she has a learning disability and she is a sociable child. All these factors makes it diffcult to follow every single piece of advice but as a family we owe it to K to give it our best effort , along with protecting her mental health.
It might be difficult to make her understand why she is unable to step out of the house for 12 weeks. She understands there is a virus around. She understands she needs to wash her hands often and change her clothes daily. She understands that she has to learn at home and not at school at the moment. She understands that she can’t see her friends but she has to Facetime them. She understands that we need to sit a distance away from each other. She understands that once again her holiday to Florida isn’t happening.
Maybe she understands more than I think. K went through a life changing event 4 years ago. Her life came to a halt with no warning.
This time, she has been warned. This time, she has been given time to prepare. This time, she isn’t doing this on her own and instead with the rest of the world.
This time it is not going to last as long. This time Florida will be rearranged to next year and not 3 years later. This time she feels well and she is at home with her family. This time she is ready.
The four of us have been distancing from each other as much as we could . I will be needing to take a break from work for a few months as I need to care for her and need to consider remote working.
My husband and I are also concerned about how our girls will cope if we are both taken ill.
We are trying to eat healthily and exercise to increase our fitness levels, hoping this will help with recovery when we get the infection
Every day we read real life stories that tell us that anyone can be infected and deaths have been reported in various age groups.
The real life stories and seeing videos and photos of those affected makes it all so real and sad.
My thinking is to take on every bit of advice given, do everything you can and listen to your instincts, so that one day you do not say to yourself..’I regret not doing …. or I wish I had done…’.
Please read the guidance if you have had a text from NHS Coronavirus like we have.
We need to #staysafe #isolatetoprotect #socialdistancing to help get through this .
You both are probably wondering why I am writing to you when I see you everyday. We have been in lockdown for a month now. You and I have not left the house all this time. It’s such a different life we lead now. I am writing this hoping that one day you will read this to remind you of what we have been through in 2020.
‘Coronavirus’ and ‘Covid 19’ have been part of your vocabulary for over 2 months now. Dad and I have been open and honest about the seriousness of this illness, and also tried to reassure you both and protect you.
We had a sad start to the year as you lost your Grandad just days after we welcomed in the New Year. Before you knew it, you were visiting Granny and Papa’s house for the last time as their house was emptied. It brought back special memories.
Mum and Dad tried to cheer you both up as we prepared for our long awaited holday to Florida. Dad and you both loved looking at ‘YouTube’ Videos on the theme parks and planning which rides you would go on. Dad did his best to book our favourite rides on his phone app.
However as the weeks passed you noticed Mum and Dad listen to the news constantly. We looked pre-occupied and worried.You heard about the lockdown in China. You heard about the first case of coronavirus in the UK in January. You heard that the virus was getting closer to where we live.
You were concerned when I spent a weekend in London. I promised you I would be careful and would wash my hands often. I promised you I would avoid the underground tubes as much as possible.
When you left the house for school we reminded you to wash your hands at school and to not touch your face or rub your eyes. Your teachers in school advised you to wash your hands. You and your friends stopped hugging each other. You were careful to not touch surfaces at school like stair bannisters. You found an old hand sanitiser in your room and you carried it in your pocket.
News reports said that the virus only affects ‘the elderly’ and not children. You were relieved to hear this.
You then heard about the first child that sadly died. You felt sad for this child. I did not tell you about this but you heard it yourselves as it was reported on TV. It probably worried you but you stayed positive. Soon after this you heard us say that children can still spread the virus and this made you wonder why schools were still open. You worried about your Mum and Dad being doctors. You worried that we would get the virus.
When I picked you up from school I did not give you a hug or a kiss like I usually do. You looked sad to me and I felt guilty. Eventhough you washed your hands when you got home, we still didn’t hug and kiss.
While at home Mum and Dad were preoccupied with the news. We were eager to know how it’s affecting everyone in the UK and World. We worried about our family and friends. We were worried if we both get it.
We then decided to teach you to cook and be more independent. We talked to you about looking out for each other. We also told you it will be OK.
You hoped we could still go on our holiday.
You then heared that Disney closed and you thought maybe we can just stay in the hotel even if the parks are closed.
A few days later we sadly told you both we couldn’t go on holiday, you wondered why Mum and Dad were relieved. We were so proud at how well you took it and you understood we can always go another time.
Sadly your dance and drama clubs had to close and within a few days schools closed too and home schooling began.
We then cancelled our summer holiday and we told you that we can’t go out to celebrate Dad’s birthday in a restaurant. I remember you both feeling so sorry for Dad but you made sure he had a fantastic special day and he did.
M, you had been practising so hard for your violin exam that was cancelled a few days before it was meant to be.
Two days after home schooling started, M , you developed a cold had to isolate for 7 days in your room. You were sad about it but you did it darling for your sister who is shielding. I missed you so much.
K, you have Me trying to teach you. I am not the best at teaching but trying my best to make it fun and interesting for you. I think it’s a fantastic time for you and I to spend time together every morning.
We are still only one month since lockdown and I know it feels like we have been doing this for months!
We say to you, use this time to be creative, do what you always wanted to do but never had the time.
We say to you, at least you can facetime your friends
We say to you, thank goodness for social media and the internet.
You bake, you cook for us. You suggest we do fun family things. We appreciate having family time together with life slowing down.
In the last few days, I notice sadness in your eyes in the morning when you come down for breakfast. We ask you if you are both OK and you say yes
You sometimes tell us it’s because you miss your friends.
You do not complain about staying at home. You know it’s to keep yourself and everyone else safe.
You realise that families have lost loved ones and you are grateful that your family is OK.
You know Mum and Dad are worried about the key workers not having ‘PPE’.
We ask you several times a day if you are Ok. We ask you to tell us if you are not.
Why would you not feel sad…your world is so different now. And you probably don’t see an end to it at the moment.
You will be confused, you will be scared, you miss you friends, you miss your life.
It’s OK to feel like this and it is important you are able to show how you feel.
I know no matter how much I try to make you happy, what you really want I can’t give you .
We are here for you, to talk to you, to help put a smile on your face when you feel down and to do all we can to make this time fun.
You are not alone in this as so many children all over the world are feeling just like you are at the moment. There are many Mums and Dads feeling guilty about their children missing out on living their lives as they normally do.
It is so rare for a child to be unwell with the coronavirus but I think ‘Children are affected by this virus’, emotionally and other ways, but you both, along with all your friends, will get through this.
This will end and we will get our lives back.
We love you both so much. We have our dreams and ambitions to look forward to when this is all over.
In this blog I would like to tell you about myself. I was born in Malaysia and lived there till I was 19 years old. My ambition was to be a doctor from a very young age. I wanted to help people and make them better.
I came from a privileged family and my father wanted me to be educated in Medicine in an English Speaking University. I had a choice of going to Aberdeen or Adelaide. I chose to attend a University in Adelaide as it was closer to Malaysia, 6 hour flight journey instead of a 13 hour flight journey.
In my 6th year of medicine in Adelaide I could choose to go anywhere in the world to do my medical elective. I did my elective in an Accident and Emergency Department in London for 6 weeks. I chose London as my sister lived in London with her husband and it was an opportunity to be with them. I was impressed at how multicultural Britain was. I visited several places in the United Kingdom during my stay. I felt part of the community and I was only a visitor.
During my stay I applied for a job as I wanted to work in the UK. I got a job as a junior doctor in Aberdeen! It must be my fate to go to Aberdeen. I went back to Adelaide to complete my degree and 26 years ago, I moved to the UK as a migrant doctor with a Malaysian Passport and an Autralian degree.
My friend, who also qualified in Australia, and I moved to the UK together and we supported each other settle into UK life. It wasn’t difficult. People were friendly, accepting and appreciated what we did. We made friends easily and had a great social life. We however did work hard, quite often starting work at 8 am on a Friday morning and not getting back to our junior doctor accomodation till 5pm on a Monday evening, only having had 4 hours of sleep all that time. Quite often working every day for 10 to 14 days without a break.
When I moved to Aberdeen the first person I met is now my husband .We worked well together. We became good friends. If I had taken the Aberdeen offer, I would have known him 6 years earlier and we would have graduated together!
As a junior doctor, I had worked on Medical wards, Surgical wards and Accident and Emergency. Friday nights were the busiest and quite often I would be the only doctor seeing all patients from midnight till the next morning. It was stressful.
I then did 3 years in Obstetrics and Gynaecology and obtained my Postgraduate Degree from The Royal College of Obstetrics and Gynaecology. It was a proud moment.
After we got married, I felt being a hospital doctor woudn’t be easy if I wanted a family. There were limited options for part time working 22 years ago in the hospitals. I wanted to have time with my children when I had them. General Practice had more flexible working hours. Things have changed since, and now women have better opportunities to work part time both in primary care and secondary care.
I have been a General Practitioner for 20 years and am pleased with my chosen career path. I love seeing patients and I love getting to know them. It is also challenging trying to figure out what medical problem someone has, in the 10 minutes that you have with them and deciding if someone is ill enough to be sent into hospital .
I held onto my Malaysian citizenship till 2016. If I had applied for a British citizenship at any time, I would have lost my Malaysian citizenship. Not having British citizenship to me did not mean I did not consider myself a British Resident. I haven’t even changed my last name to my husband’s when we got married and I am happily married for 22 years. A passport or a name itself does not indicate loyalty.
However in 2016, I started feeling different and I started to feel like an outsider. I was worried that I could be ‘kicked’ out of Britain. My husband and kids are British. Working and paying my taxes for 20 over years didn’t seem to matter anymore.
I have experienced racism in the last few years, for the first time after living in the UK for 22 years. I got fed up of the multiple abuses I got while especially while driving in my car. Like it was a perfect opportunity to shout out something nasty to me and then drive away quickly. My young daughters were seeing it all too. I got a dash cam in my car to record these abusers.
People would speed past a zebra crossing as I am standing by it waiting to cross. Over the phone I was asked by a patient to give her an appointment with an ‘English’ Doctor. I have had my car tyres slashed and my car scratched. I have family and friends say to me that they have encountered more racism recently than ever before. It suddenly became OK to be discriminatory, as it was people’s right to say what they wanted no matter how much it may upset the other. I lodged a police report as I wanted my experiences recorded by them. A police officer called me back and said they too have had higher numbers of hate crime recorded in the last few years.
When the first few deaths in health care workers was reported, I noticed they were all of BAME (Black, Asian and Minority Ethnic) origin. I noticed that several of the doctors interviewd in the news channels were of BAME origin. Several of the nurses have been of BAME origin. Several NHS workers and Care home workers are from Europe too.
I said to my husband, I hope the public now realise how the NHS and the Care System is supported by many ‘foreigners’ from all over the world including Europe.
I did not come to the UK to be a ‘rich doctor’. I could have earned lots more money working in Malaysia. My parents did not understand why I did not choose to work in Malaysia. I came to the UK because I felt democracy, equality and being ethical mattered more than money.
There are currently so many messages around wishing for a perfect world when this pandemic is over. A world where our fast paced life is slowed down, family life and time spent with friends and the vulnerable are prioritised over materialistic items, and where health comes before wealth. I hope acceptance of one another despite race, religion, age, gender, sexuality, social economic status and disability makes this wish list too.