I was recently interviewed on BBC Radio Sheffield by Toby Foster who does the breakfast show. I attach links of the interview in this blog.
My daughter Melissa and I were first interviewed in April 2020. You will also hear parts of this interview on the link below. The interview in 2020 was about Melissa isolating in her room as she had viral symptoms. There was no testing available for Covid 19 at that stage as only those who were admitted into hospital were tested. The assumption was if you had viral symptoms it was Covid 19. It was the law that the individual and members of the family isolated.
My older daughter Kirsty was one of the first 1.5 million people who were classified as extremely vulnerable and therefore had to shield at home. By June 2020, over 2 million people were advised to shield.
Radio Sheffield were keen to know how the Pime Minister’s announcement of ending self isolation for those who are Covid Positive would affect Kirsty and the family. This ruling was meant to be reviewed on 24th March 2022 but it has now been brought forward by a month to the 24th of February.
After 2 years of ‘living with the virus’ it feels a bit unbelieveable that ‘normality’ might be approaching us sooner than we thought.
It would be great for us to go back to living as we did. I expect it would take me a bit of time adjusting back to a life with no Covid restrictions.
However what will this mean to those who are clinically vulnerable? How do they start living in a society that may expose them to Covid 19?
Please listen to Melissa’s and my interview on the links below.
Melissa developed symptoms of Covid 19 the day after the interview on the 11th of February 2022. As I write this, she is still isolating in her room at Day 9. So that’s twice now in under 2 years Melissa has had to confine herself to her room. She isn’t unwell thankfully but it couldn’t have come at a worse time for her. She was meant to be on her half term holidays.The rule of coming out of isolation after a Day 5 negative lateral flow test wasn’t in her favour. She waits patiently in her room, hoping every morning she would be testing negative on her lateral flow test.
The World Health Organisation still suggests a 14 day isolation. The length of isolation has gradually reduced in England for those who have had both Covid 19 Vaccines. If you have 2 negative lateral flow tests before the 10 day isolation ends you can come out of isolation. Those who are not double vaccinated have to still isolate for 10 days.
There are still high numbers of positive cases reported daily. Significant numbers of people are still dying. The NHS has high numbers of staff off work due to illness brought about by Covid. The lack of staff will only cause even more disruption in the provision of an effective health care service either in acute conditions or in catching up on routine surgeries that have been delayed for up to a year or more already.
So what happens when society mixes again with no restrictions. If you are one of those whose symptoms are mild then I guess life will move on as ‘normal’ for you. You will be able to return to work, get on public transport and socialise as someone who doesn’t have Covid 19. And without needing to wear a mask either. But what if you happen to come into contact with someone who is clinically vulnerable, or even not clinically vulnerable . Those who have Covid are not able to predict how unwell they would be or if they would encounter post Covid or long Covid effects. Vulnerable or not, it is unpredictable to know what your symptoms will be.
As a doctor, I question if this is the right decision to be made at this point in time. Questioning the scientific evidence behind any decisions made around health is just what I would do. I somehow can’t help but feel it is a decision that has been plucked out from nowhere. Why have we not heard the scientisis advising the government come forward and reassure us?
The more people out and about infected wth Covid, the numbers infected will rise and I would have thought that will only put more pressure on the economy, health and education system. Once again we will encounter the shortages in the workfoce. Not everyone may be well enough to go to work.
I agree we need to ‘live with Covid’. We all need to get back to the freedom we are used to. However I believe there needs to be more guidance on how to protect the vulnerable. Will masks be reintroduced in certain conditions? Should health care workers who are positive with Covid continue working and having contact with patients? Will there be access to free lateral flow testing in certain circumstances? I hope some of these uncertainties will be addressed clearly today by the government.
As a society we have a responsibility to protect each other.
A healthy community can only contribute to the economy in a positive way.
As a family we have been going out socially and meeting up with family and friends in the last few months. However, we do it cautiously. Lateral flow testing is now just a part of our daily routine before meet others or go to work.
I was told by friends recently who live in Australia that we in the UK are privileged to be able to have free access to lateral flow tests. It is easy to order online and delivered within 7 days. We also have had a great vaccination programme that has involved the NHS and the many volunteers who played a valuable role in making this a success. I am grateful for these privileges. However only 71% of our population have been fully vaccinated and there are 49 countries ahead of us in terms of vaccination rates.
Toby Foster on BBC Sheffield made a really important point. Whatever your views are about the end of isolation. However you choose to get on with life, think about the people around you and what their individual needs may be.
Being clinically vulnerable doesn’t mean one’s life is less worthy . On the other hand, not being vulnerable doesn’t mean one is resistant to ill health.
I finally want to thank Melissa for once again giving up so much to protect her sister Kirsty, Neil (my husband) and I. We couldn’t be prouder of you darling. You are a great sister and daughter. But most of all you are a responsible, kind, brave and strong individual. We love you so much.
If you are clinically vulnerable, it would be great to hear what you think about these changes and how it will change you life.
Hello everyone! Hope you have enjoyed the sunny weather the last few days. After going through the wettest May recorded, we were blessed with experiencing possibly the hottest days of the year so far. My family and I have been grateful to have 2 family weekends away in May. Both holidays only 2 hours away from where we live; North Yorkshire and Lincolnshire. We managed to even take in the sea breeze and be calmed by the sounds of splashing waves. Only proving to us that we in the United Kingdom are priviliged to have beautiful landscapes that surround us.
As we proceed into the summer months, my daughter Kirsty has passed 6 months since she received her Car- T treatment. Car- T is a breakthrough treatment for various cancers including leukaemia. You can read more about our recent experience and Car-T treatment in more detail in one of my previous blogs, http://www.listentomythoughts.com/2020/12/21/a-very-covid-christmas
My first book, ‘Our Family’s Journey Through Disability and Cancer’ was published at a time when Kirsty was just about to receive her Car-T treatment. Car-T stands for Chimeric Antigen Receptors Cell Therapy. A treatment that is relatively new. Therefore we encountered lots of uncertainties in how Kirsty would respond to treatment.
Going through this treatment 200 miles away from our home and during the pandemic hasn’t been easy. The book has a new cover to mark 6 months since Kirsty received her Car-T treatment.
Thank you to everyone who has read my book and given it a review. Your feedback has encouraged me to keep writing. You can read most of the reviews I have received on the Amazon website . It is one of the platforms my book is on.
Here are some of the reviews.
‘A very thought provoking yet heart warming book. Well written, giving the reader an insight to what a family goes through during an illness such as leukaemia.’
‘I think it is an important book for health professionals who look after children and adult with disabilities to read- it portrays the experience of families very honestly.’
‘It is lovely to see the pictures throughout the book and also there are some very good websites at the back of this book for support and for more information.‘
You can buy the book here. The link takes you to the various platforms where my print books and ebooks are on sale.
I have donated to Clic Sargent Cancer Charity and the Down Sydrome Association from the sales of the book.
Some of you may also know that Clic Sargent is now known as Young Lives Vs Cancer.
The photo on the book cover was taken 2 months ago. My new cover was designed by Stewart Williams, who will be designing my next book cover too.
I am currently writing my second book and hope to release it in November 2021.
In my next book I will be sharing with you about how going through this cancer journey again especially during the pandemic has been stressful in a different way. Something several individuals and families would have encountered in the last 15 months.
Please follow me by clicking the follow button on this post.
You can also sign up to my website.
I would love to hear from readers. Please feel free to contact me here.
Please also read my ‘Celebration of Women Series’ that was a feature in March and April. I thank Jo, Jane, Fiona and Srimal for their contribution and sharing their inspirational stories and achievements.
Please look out for my future blogs on ‘ Celebrating Disability’ later this year.
My social media sites are,
Twitter @JH_blogger, Instagram @medic.mum and Facebook Listen2mythoughts.
Here’s hoping for a happy, healthy and peaceful June ahead.
In this blog I continue my series of celebrating some of the inspiring women I know. I am pleased to introduce you to Fiona whom I first met on Easter Sunday 2004 during a church service. Our friendship has grown over the years as we have laughed and cried together. My oldest daughter Kirsty and Fiona’s twin sons, William and Edward grew up together since they were 2 years old. Fiona is one of the kindest people I know and is always looking at ways to help others no matter how busy her life could be. Her generosity and care towards others has not been compromised by the pandemic. If at all she has stretched herself more now than ever before reaching out to others.
Please tell us about yourself, your work and interests.
I’m an everyday Mum to teenage sons who are twins, early years teacher and friend of Janet. Janet and I have known one another for almost 20 years but l can count on one hand the times I’ve seen Janet and family for real in the past twelve months! l love seeing friends and family so like the rest of the world I’ve really missed the contact that until March 2020 we all took for granted.
I moved from Cumbria to Sheffield in 1990, leaving behind a much loved job in a tiny village school, a wonderful set of friends and a terrific area. Having met my husband John, who is a Yorkshire lad and vet, it seemed right to join him and 30 years later it still seems to have been a good decision! l missed Cumbria such a lot at first but Sheffield is a super city and in a way we have the best of both with city delights (though sadly no more John Lewis!) and wonderful countryside too. Local walks have meant such a lot to us in the last year.
I am almost retired now but l still do a morning each week at an Infant school, sharing music with four to seven year olds. My husband works long hours, so l have time to enjoy dog walks with friends, helping out at church, swimming and cinema, trips to the Yorkshire coast (when it’s allowed!) and just being around for my friends. A favourite assembly saying of mine is, “If you want a friend, be a friend,” and although l might share that sentiment with very young children it’s my mantra too and my friends mean everything to me.
We love Cain, our RSPCA rescue cat and when I’m at home Radio 4 is generally on in the background-‘Desert Island Discs’ and ‘I’m Sorry l haven’t a Clue’ being particular favourites.
Something not many people know is that l love doing jigsaw puzzles, sad or what! Finding a good puzzle in a charity shop is a secret pleasure of mine!
2. We have just experienced a new date to add in our Calendars for years to come, the 23rd of March, Reflection Day. A year since the UK went into lockdown.How did you mark this day?
It was a pretty regular day for us.We listened to the Today programme as we got ready for work and then l was at school and John was at work.I finished at lunchtime and met two friends.We had a take away coffee together and as they both work for the NHS we reflected on the current climate and how Covid is affecting hospital life.
Added to this one friend had been to a close family funeral the day before, a very old, much loved person and she had come back from his very special service and green burial feeling uplifted.That means a lot at anytime but when so many people have had to grieve in very difficult circumstances, it was great to hear of their meaningful farewell.
After that l went home. As John was still at work at 8.00pm, I’m afraid we didn’t do the actual candle ceremony. However, l hope that as time goes on, as a world, we will remember and learn from all that has happened and find a meaningful way to reflect.To me, the best way we can honour our lovely dead is to continue to live properly in all that we do.
3. I know you have kept busy throughout lockdown. Please fill us in about your lockdown time and volunteering?
My work is part-time these days so l am not in school very much but l see the hard work going on in my school and as a Mum of boys in year 13, l saw the Secondary schools swing into action to support their pupils.
Church services came to a standstill so my ‘baby’ service for Mums and their little ones, had to stop although we have kept in touch through texting. Our church, with some support from Sheffield City Council, became a support hub.That meant that every morning two volunteers would go to church and be there to answer the phone, anybody needing anything could ring in. l did every Wednesday with a friend.We enjoyed the chance to meet up and sat at a distance in the church office fielding calls and doing whatever we could to help.This could range from doing a bit of shopping for an older person, collecting prescriptions, supporting people shielding and generally trying to point people in the right direction if they needed anything. Also, as a church we support an inner city food bank. Occasionally I’ve helped out and goodness me that has underlined how disproportionately Covid has hit the community. It’s been a real pleasure delivering food to households needing that little extra that can make all the difference.One day l struggled to locate an address, when l eventually found the home l was greeted by four generations crowding the doorway, all pleased to see me. A little girl spotted sweeties in the food bags, she was thrilled to bits.
Since January, the church has been a vaccination hub for local GP surgeries.Our church warden is a retired practice nurse, her husband is a retired surgeon so knowing the medical world she has worked tirelessly to get things going. Welcoming NHS staff and volunteers alike to roll out vaccinations across the community.Church resembles a field hospital but it has been wonderful to see thousands of local people receiving their jabs.I volunteer when l can,(welcoming, wiping chairs etc NOT vaccinating l hasten to add!) It was fantastic to welcome the oldest members of the community in the first wave. Snow and ice stopped nobody and they were so thrilled to venture out and receive their jabs.For all the ups and downs of dealing with Covid that we have seen, I think we can be proud of the vaccination roll out. But, let’s hope that roll out can be equally effective world wide so that all people everywhere can enjoy the protection and security that it offers.
I’m not very techy so I still do my shopping in person. ( Thank you wonderful supermarket staff and delivery drivers.) An older friend is having to shield as she’s having a run-in with breast cancer. l do her shopping every other week. She’s an absolute joy and actually as all our parents have now died having an older friend has become really special to our boys who no longer have grandparents.They like her very much. As l said at the start of my ramblings, ”If you want a friend, be a friend.”
I often ponder just what our four parents would have made of the last twelve months.
4.You had the added stress of your sons not sitting A Level exams as planned, waiting on their results and hearing about University placements. What was this experience like?
Back in February 2020 life was busy, life was good, and although we were aware of the news in China we never dreamt that it would permeate our comfy lives. We had enjoyed a lovely February holiday in the Lakes and early March was busy, busy with University visits, Will’s music and cross country, not to mention a brass band pea and pie supper, looking back a plethora of super spreader events! And then it happened…..the boys came home from school, never to return!
I felt sure that it would just be a temporary measure. They would soon be back at school working towards their A levels, but NO, ”Schools out”and it wasn’t just for summer! It was a strange time but the boys handled it really well.They had their University offers in place, they just needed to find out how A levels would be awarded and offers met.Their school was kind and supportive but with all the younger pupils to be looked after it soon became apparent that school was well and truly over.
To their credit the boys kept themselves busy, Ed got involved with a school initiative to make hospital scrubs and then from Easter onwards he became a lockdown entrepreneur. He loves baking and he established ‘Ted’s Teas’, a little business making and delivering yummy afternoon teas. It kept him busy until he went off to University and he made a lovely profit to add to his University funds. He even received a call asking if he delivered up to Bradford!
Will is a keen runner and he ran miles getting to know the paths on the western edges of Sheffield like the back of his hand. Will also loves playing his tuba and he played alone (hour after hour!) and with others via Zoom.They both also did a little bit of Zoom tutoring to support two younger boys from school.
Like everybody else they have learned new ways of doing familiar things. Attending 18th birthday parties via Zoom. Having on-line games evenings and quiz nights and making fabulous brass band videos with everybody playing in their own homes. Yet not quite the rites of passage that 18 year olds expect and enjoy so much. School kept in touch with them but just how A levels would be awarded remained a mystery, not just to us but to Gavin Williamson too it would appear!
Despite not being in school since March nerves built up big time for results day. Phew, all went well and they made it to their 1st choice offers. I felt so proud on the morning because being twins they were both waiting for their results to ping in.They sat upstairs at their computers, John had to go off to work and l was waiting downstairs. One heard ahead of the other but sat quietly until he heard that his brother was successful too before declaring his hand! That act of kindness really touched me.They came downstairs thrilled to bits and l literally felt the wait and worry lifted from their shoulders
Fortunately, the boys were in a good place with an exciting future ahead of them but my heart goes out to students who had their plans turned upside down by the results algorithm and had to face further uncertainty at an already uncertain time. If only the government could have recognised that skilled, informed teachers know just where their pupils are and would have graded them professionally and accurately without some quirky government led formula. For some youngsters and their families results day was a tough day.
We had waited until results day for our holiday so with a spring in our step and Rishi’s mantra,”let’s all eat out to help out,” we set off for a glorious holiday, a week out at Filey then a week up in Scotland staying at a lovely lighthouse cottage on the Mull of Galloway.
5. Are you able to comment on any significant changes you have noticed when schools returned? How do you think it has impacted kids socially, emotionally and in their education?
It’s great to welcome everybody back to school, Covid precautions remain in place especially for Secondary children but the risks are manageable and children are generally happy to be back. Although there are learning gaps to be bridged, l think there are much deeper issues to be tackled.
Most parents have done a great job, they’ve worked in tandem with schools and with a hybrid approach children have continued to learn. For some children, this has been a very wobbly time and we must acknowledge this and put strategies in place to help them face the future. Not just learning strategies but wellbeing strategies, we mustn’t forget some children have faced issues such as financial insecurity, abuse, lack of IT equipment in the home, hunger, anxiety, deprivation, eating disorders, bereavement, alcohol issues….the list is endless. Not all, but for a fair number of children some of these worries are very real and if not faced sooner rather than later they will fester and worsen.
So, when l hear the government talk about summer school and catch up lessons l feel we should offer much, much more-personal and social education, outdoor education, mindfulness, healthy living courses, happiness courses etc.
Obviously older children have a much tighter framework to follow but we know that children(and us adults too)can achieve so much more if we are happy and healthy and having a good time in life.
I really believe in Outdoor Education as a vessel for developing the sort of personal skills that will strengthen children to grow and blossom in life and l would much rather see youngsters enjoying a catch up summer of outdoor activities rather than battling with fronted adverbial, phonics, long division etc. Could you do a good day at work if you arrived tired and hungry, if you hadn’t been able to prepare your work at home, if you were worried about a family member poorly and isolated in hospital and if you’d had a fight with your brother? l know l couldn’t and yet we expect some of our little ones to do just that!
l realise we’ve got to arm our children with the skills they will need for life beyond the classroom but let’s lead them gently and let’s really believe in them.
6. What are your hopes for you, your family and the community in 2021?
As a family we are just fine, we’re both in work and University life is going well for our boys. But, l do worry about society and how we will shape up after all of this.The pandemic has hilighted some very big gaps in society and I’d like us all to work together as a people, UK wide and world wide to refocus, to upskill and to bond in unity and positivity.
Some very big issues are out there and we seem to have become very polarised and wary of other people’s views.Let’s not be scared, let’s look at the big issues together, let’s honestly face up to them and build a world fit for future generations.
7. Has this pandemic changed you in anyway?
Ha, l don’t think so. I’d love to say, I’ve written my first novel, landscaped the garden, learned a new skill but in truth I’ve just muddled along being me. I’ve certainly watched a bit too much TV. In the early months we watched the news 24/7, done too many jigsaws and eaten too many sweeties!
Although l haven’t actually seen friends and family l know that friendships have grown and blossomed. Days go by without us seeing one another but the constant messages flying around on WhatsApp makes it feel as if I’m “chatting” with pals from early in the morning until late at night and those messages, photos, jokes and silly videos have meant such a lot. l still write cards and letters to my friends and that keeps me busy.
8. Do you wonder if University life for future generations will be very different to the experience earlier generations had?
I think every student will have a different view on this depending on their personal experience.l think although it was a very tricky start it was right that youngsters went ahead and started their courses. If they hadn’t the University system would have come under pressure and with no travel and precious few jobs available taking an exciting gap year was not really an option.
However, l think it’s been really hard especially for students who for whatever reason have had a tough start with having to learn on line, being in a flat with a new set of unknown others, maybe unsure of your new city and choice of course, maybe feeling very homesick, maybe hiding a hidden health worry, maybe feeling overwhelmed or underwhelmed by the work load-all these things have made it a bit of a roller coaster and we must be there to help students overcome any difficulties they have experienced.
9. Putting Covid aside, where do you see yourself in 5 years time?
Well, l guess we’ll be retired and our boys will be through University. l love the idea of doing up an old farmhouse in the nearby countryside but whenever we think about it we get cold feet. National Trust visits and holidays exploring Yorkshire, Cumbria and Scotland make us happy. We love time spent out on the Scottish Islands, Islay and Jura are firm favourites. We had talked about getting a season ticket for The Light cinema as we enjoy movies on the big screen. For now it’s iPlayer and Netflix!
10. This might not be an easy question to answer but what have you enjoyed most in the last year?
What l have enjoyed most is just being me and bumbling along with my family and friends. Imagine a beach, we’re all just little pebbles doing our best in life and being inspired by some of the big rocks that we see out there. For example Captain Sir Tom and his fundraising, Billy Monger the young double amputee and his amazing fundraising triathlon, Chris Whitty and the NHS and many more.
As“pebbles”we may be Black, White, Male, Female, LGBTQ+, old, young, with or without any faith, Labour, Conservative, police, non-police, rich, poor, pro Europe, pro Brexit etc, but we’re all being washed over by the same sea or let’s call it life knocking us this way and that, giving us good days and bad days. Let’s together as a society do all that we can to make life as special as we can for all the pebbles out there on life’s beach not just the ones that are near to us and like us but every pebble. Or, in a nutshell, ”If you want a friend, be a friend!” Life whizzes by so very quickly, let’s try and enjoy every precious second of it.
Fiona and John enjoying a family holiday pre-Covid 19.
Thank you Fiona for all that you do as a Mum, wife, teacher, friend and community/church volunteer. You are truly an inspirational woman .
Blogger, Midlife Influencer and Writer are just some words to describe this amazing lady, Jane Chelliah. Jane is also a Mum to 21 year old Maelo and a wife. Jane is my older sister whom I have always admired and looked up to from a very young age. Jane has taught me a lot about living life and making the most of it. I am glad to share her thoughts with you today about achieving what you aim for in life.
1. How has 2021 been so far for you?
I accomplished so much in 2020 that you would think I would have started 2021 with a bang. In 2020, I was signed up by a well-known literary agent based on 3 chapters of an unfinished novel. I finished writing the novel in September and felt great. I was promoted at work in September. Then in 2021, I developed imposter syndrome and became a damp squib because I was afraid of failing. Fear of failure is a huge internal obstacle. I am gradually starting to realise how debilitating negative beliefs in yourself are.
2. When did you discover your interest and talent in writing? What steps have you taken to develop this?
In my teenage years, I started writing interesting essays in school and loved English Literature for the stories. I wanted to articulate myself better through the written word. I studied creative writing at Lancaster University and took various courses. My advice to anyone who wants to write a novel is to study the art of it. The learning journey is a creative process.
3. Blogging and social media engagement is a totally different talent- how did you develop this?
Both require strategic thinking about how to get your message across. Your message comes from your beliefs and values. Synthesising these into messages is how you get your beliefs and values across to others.
4. You have written a new book-how much can you tell us?
It’s a novel about inter-generational relationships in an Indian family. Most of the protagonists are female. I want to explore how Indian women relate to each other within a cultural structure which is very patriarchal.
5. How has Covid affected you- negatives/positives- anything you have learnt about yourself in the last year
Covid has taught us all the meaning of fear. We live in fear of something that we cannot see but, yet, which is a threat to our lives and the lives of our loved ones. We put on our masks to protect ourselves from something that we cannot see. It’s like a horror movie where the threat is something invisible. I have learnt the meaning of fear but, also, resilience. All of us are finding ways to cope with this and we will emerge stronger people.
6. Tell us about your family.
I have a lovely sister, Janet Chelliah author of this blog, who encourages me to keep writing. My daughter encourages me too and believes in me. Janet and I have a sister-in-law who encourages us too. Support and encouragement within the family is what keeps us moving forward.
7. Who inspired you in your childhood?
Tamil Movies inspired me because of the drama that goes on in them. There is conflict and resolution against a background of singing and dancing. All these make up our everyday lives.
8. What would you like to achieve in the next 5 years?
To be able to retire and carry on writing full-time.
9. Tell us about your TV appearance in 2019? How do you think you contributed to the programme? What did you learn from it? Would you like to be On TV again?
I was on the Channel 4 reality TV Show, Mums Make Porn, which aired in 2019. Filming the show and watching the finished product on national TV was one of the best times of my life. Taking part in a reality TV show skyrocketed my levels of courage and self-awareness. When you put yourself out there you must have tremendous belief in yourself or you won’t enjoy it. I would love to do it again.
10. What advice would you give young adults trying to achieve their dreams and ambition in this pandemic?
Look for new ways of doing things. The pandemic has disrupted traditional ways of living. More and more people are turning to the online world to further their ambitions. Can you do something else instead if the avenues that you are pursuing aren’t reaping results? Is there another way to achieve your dreams?
11. What advice would you give women in their mid life?
Keep pursuing your ambitions and dreams. Age is never a barrier. These do not just belong to your younger self.
Happy Mother’s Day ! I feel privileged to have a guest on my blog on this special day. I met Jo, Lee and Harry on the children’s cancer ward in 2016. Kirsty, my older daughter and Harry were both diagnosed with leukaemia within weeks of each other. They were both teenagers then. Melissa, my younger daughter and Sophie, Harry’s sister met during events organised by Clic Sargent, Cancer Charity, to support siblings of those being treated for cancer. Although our stories parrallel each others, our individual experiences were different.
Please sit back with the beverage of your choice and read about this inspirational family on Mother’s Day.
1.Tell us a bit about yourself and the family,
We are a family of four – Lee, myself, Harry (now 17 year old son) and Harry’s sister Sophie (now 14). I am a teacher of modern foreign languages and work in a high school in Doncaster and Lee is a heating engineer. Harry enjoys IT and is currently completing his studies at a college in Doncaster and is hoping to embark on an apprenticeship in IT in the near future. Sophie is a bubbly, outgoing girl and enjoys time with her friends (so has found lockdown difficult) she is in Year 10 and enjoys school.
2.Can you describe a family time that you have enjoyed most?
I think a family trip to Paris is perhaps the one we refer to with the fondest memories. We packed so much sightseeing into the week we were there that we needed a break on our return home!! I had carefully planned a busy itinerary for us as I had been to Paris several times as a student and as a teacher taking groups of schoolchildren, so I knew what I wanted everyone to see! It became a something of a standing joke whilst we were there – my lovely family referred to it as ‘Jo’s Bootcamp’! We were blessed with glorious sunny days and stayed in a lovely boutique hotel just off the Champs Elysées so we had a great central location.
3.How did you cope as a family when Harry got diagnosed with leukaemia?
Looking back, the time of diagnosis is all a bit of a blur. Obviously right at the very beginning the reaction was horror/disbelief and a gut-wrenching inability to comprehend the news which had been delivered – Lee, (who normally takes a back seat in the running of our household!!) was the steadying hand and seemed to handle things with calmness and reassurance whilst I struggled to speak to friends and family without crying. I always held it together in front of Harry though – we both did.
We both stayed with Harry in hospital for the first couple of days/nights and then Lee returned home to be with Sophie to try to keep her world as normal as possible. Grandparents also stepped in to try to keep things at home normal, whilst we spent so much time at the hospital. For the following couple of weeks we tag-teamed at the hospital during the day but I stayed most evenings with Harry. What made it much more difficult for us, was the distance to the hospital (a 74 mile round trip) It was such a turbulent time and I look back now and wonder how we came through it….
4. Harry always had a lovely smile everytime we saw him. What is Harry’s advice to other teenagers going through a similar journey?
It took Harry a considerable time to ponder this question and answer it. He struggled to come up with advice for others but he said that the most important factor for him, was maintaining contact with his friends.
This was something which caused me lots of upset at the time, because obviously his world had been turned upside-down and was practically unrecognisable from his former life – gone were the weekends of playing football for his local team, days out as an independent, adventure loving teenager, going to school, socialising with friends in the evening/at the weekend…..everything had changed. We had a very poorly boy and a house full of medicines. Our weeks were punctuated with frequent trips to SCH and our days/nights were totally unpredictable – monitoring his wellbeing 24/7 and being ready to jump in the car at any given time of day/night to get him to hospital should his temperature spike.
Harry had an Xbox at the time and would hook up with his friends online at weekends and evenings, and to be honest it was a godsend! I remember saying to him one day how worried I was that he had stopped seeing his friends due to his illness. He said ‘Mum, they’re still my friends, they’ll never stop being my friends – I just don’t see them every day, but I do speak to them every day’
He also said, in answer to this question, that he just tried to focus on the end point. 3.5 years is a long time in anyone’s life but at his age it was equivalent to a quarter of his life!
5. What advice would you give other families going through a similar journey to yours?
I’ve been asked this question lots of times by newly diagnosed families and my answers are always the same:
· Take one day at a time. That’s all you can do. With this type of illness and treatment regime it’s impossible to make ‘plans’ . We quickly learnt that it was futile to try to plan too far ahead, so things like holidays, social events, meeting up with family and friends had to be very fluid.
· Accept help from others when its offered – in whatever form. People are keen to do whatever they can to support you. You will need it.
· Try to stay positive (really hard at times)
· Try to look after yourself and each other too. Obviously your sick child is always going to be your number one priority, but try to make time for yourself too. A walk, a bath, a phonecall with a friend – small measures but ones which can help lift your mood and clear your mind
· Don’t be afraid to ask questions of your medical team
· Don’t google!! (I need to follow my own advice!) instead use trusted sources of online information, e.g Cancer research/Macmillan/Bloodwise/Leukaemia Care etc
6. Were there any support groups, books and people that helped you all cope?
1. The medical team at Sheffield Children’s Hospital, won’t ever be able to thank them enough
2. CLIC Sargent were absolutely amazing (I often say I don’t think I would’ve coped without the support from our CLIC social worker, Louise – and I feel so fortunate that our family had the privilege of her expertise)
3. Friends, family, colleagues and neighbours
4. PACT ( Parents Association of Children with Tumours and Leukaemia)– also offered tremendous practical support as we spent so much time at the hospital over the 3.5 years of Harry’s treatment.
5. Families of fellow patients on treatment who became friends and have remained friends even post treatment – an invaluable source of support. I saw a meme which said ‘Childhood Cancer – a world where strangers become friends and friends become strangers’ the message is sad but there’s a shred of truth there.
6. Facebook support groups ‘Children with ALL’ and ALL T-cell Leukaemia Support (Paediatric) – in domains such as these the newly learned vocabulary you’ve acquired and the experiences you are going through are understood and shared by so many . These groups can be a fantastic source of information/advice/solidarity
7. How did it feel when the end of treatment approached?
Very scary. At the start of treatment you focus on this endpoint and in your mind you envisage the parties and the celebrations, but at that stage you have absolutely no idea what you are going to live through before you reach that point. The reality (for us) was very different. Harry did not have a smooth ride through treatment – nothing was straightforward about his journey and there were lots of issues to deal and unexpected side effects which meant that we spent so much time at the hospital for the entire 3.5 years. The 4 walls of the hospital become a ‘security blanket’ and all the medics who work with you for such a long period of time, become almost extended family.
As the end of treatment got closer, I could feel my anxiety increasing. A return to disturbed sleeping patterns and a lack of clarity of thought as the ‘relapse’ demon would often dominate my mind. Harry’s treatment had changed the way we lived our lives. Through necessity not choice, we had become reliant on the hospital, the treatment and the array of daily medicines – and I started to panic insanely that as soon as this was abruptly removed from our lives then the leukaemia would inevitably return.
It has been a very slow return to any kind of stability post end of treatment and at times I still feel like I am living on a knife edge (I don’t believe Harry feels this way, which is great!) – but, sadly, as a parent the psychological trauma that you have endured damages you – forever.
8. What was the best things about 2020?
Apart from Harry ‘ringing the bell’ to signify the end of treatment – which was obviously the best thing to happen to us in a number of years – I have to say that 2020 was tough and unremarkable.
9 How has the pandemic affected you and the family?
The pandemic has made me sad and a little angry and resentful, not for myself but for the ongoing lost opportunities for my children. I think the timing for us, as a family was particularly tough. Harry had, in effect, been living a life of self-isolation for the previous 3.5 years and we had great plans for 2020. But I am also optimistic about we have gained and learned. We have definitely become even closer as a family unit than we were before, and we’ve shared experiences with each other/family/friends that we never would have, had it not been for a pandemic! I mean who would ever have believed that you would celebrate your 50th birthday, virtually via ZOOM – drinking prosecco with friends and family for 6 hours!!!!
10. What are your plans for 2021?
No grand plans – just time with friends and family – hopefully in person!!
11. What is your advice to teachers who are working so hard to keep kids educated and staying safe?
Hard for me to answer this one as I am a teacher. I think teachers up and down the country have worked tirelessly to provide the best possible support to our children throughout the pandemic. On a personal level I am proud of what I have achieved in terms of professional development – I have had to adapt and up skill overnight and know that I could not have done any more to support the learning of my students. I feel as though I have done 10 years worth of CPD in 12 months!! 😊
12. How do you think cancer impacts on siblings in the family?
Whoa – this is huge! Its impossible to estimate the impact that a cancer diagnosis has on siblings. I feel as though I will be finding out for years to come. Sophie will often refer to events from her childhood in terms of ‘before Harry got ill’. This speaks volumes to me as it implies almost that, pre-diagnosis was a different life – she’s right.
Whilst you do whatever you possibly can to minimise the impact – there are times when you can’t be there for the sibling because you are elsewhere with your sick child.
Hope you have a great day Jo. Thank you for sharing your thoughts and experiences with us. Your advice on taking one day at a time, and how you and the family celebrate every special moment is so vital for all of us going through difficulties in our lives, especially in the current pandemic.
Reading this sentence ‘ …sadly, as a parent the psychological trauma that you have endured damages you – forever.’ this has put my feelings into words for me.
However, ‘Hope, Strength, Unity, Love and Friendship’ are words that are relevant to each and everyone of us at this moment in time while we experience a different way of living in the pandemic. I think every household would benefit from purchasing one of the above key rings from Clic Sargent. It will be a reminder to us to hold on to positivity.
Just 5 weeks today my daughter Kirsty came home after a long hospital stay. Readers of my blogs would know Kirsty has been in hospital on and off from August 2020; 10 weeks in total. My husband and I took turns to look after her while in hospital. She is 19 years old. Under normal circumstance, she is an independant teenager but sadly was not able to care for herself due to the severity of her illness. Kirsty has Down Syndrome and was diagnosed with leukaemia 5 months ago.
Kirsty is now starting to experience ‘normality’ in her life by being able to attend various college lessons and creative lessons via Zoom. She isn’t able to attend face to face lessons at the moment as she is shielding.
I am Kirsty’s main carer. However my husband is also involved in her care. We take turns to give each other respite.
Just recently I read the government guidance on direct payments that was published in November 2020. It’s guidance for individuals, regardless of age, who receive direct payments and how they are able to use this money in the pandemic. It’s a document that is not only useful to the individuals but also to others who support them and their Personal Assistants. Please click on both links below for the updated information.
Direct payments refers to money given by the government to individuals to help them pay for their own care.You will need an assessment by a social worker before you can apply for direct payments.
Kirsty, who has a learning disability, had a Personal Assistant (PA) in the past who kept her company after school or on the weekends. Kirsty enjoyed meeting up with her Personal Assistant who became a friend. They used to go out to cafes, visit the cinema and bowling alley, or sing together at home on the karaoke machine. It was an opportunity to go out safely with someone other than her parents. It made her feel more independent.
Due to this coronavirus pandemic, she hasn’t had a Personal Assistant visit her for almost a year. This is because Kirsty has been shielding for most of the year and we chose to limit contact with people in general. PAs can still look after those who are shielding if they take the necessary steps to ensure their clients are well protected.
Kirsty misses the company of her Personal Assistants, just like she misses seeing her friends and socialising. The new guidance will be of benefit to Kirsty and those who have direct payments; whether their current provision has changed or not. The document quotes several ways direct payments can be used by families and local authorities should be supportive of this.
There are many changes introduced by the government on how individuals can use their direct payments.
Your direct payments should continue as before. These remain as important as other types of provision, and LAs and CCGs must make every effort to ensure that your budget and payment are maintained and supported.
‘Flexibility’ is a key change. It also mentions the availability of free Personal Protective Equipment (PPE) for Personal Assistants and how to obtain them.
There is a detailed description on what PPE is suitable, how to use them and how to dispose of them. There is a video to provide visual and written information.
PAs are considered key workers by the government and are entitled to the annual winter flu vaccination.
Another important point this document makes is that family members caring for those receiving direct payments can also be paid. This wasn’t the case prior to the pandemic. Families at the moment may not get the respite they used to have and therefore are probably finding themselves juggling their time as carers, parents and workers, while trying to look after other children and their own health. If you are in this position please refer to the document to see if this is a helpful way to use your direct payments.
Even if you do have a PA but for some reason they are unable to work for you, eg needing to isolate or they are vulnerable themselves, it is possible to use this money to pay a family member to temporarily provide help.
If someone is admitted into hospital and needing their PA’s to help support them in hospital, the money can be used to pay the PA. This however needs to be discussed with the relevant people in the hospital as there may be extra restrictions to allowing external help for inpatients due to Covid 19.
This document highlights various case scenarios that give good and clear examples on how direct payments can be used. These scenarious are highlighted in boxes throughout the document.
Scenario 2 describes a couple who usually enjoy a meal out at a local restaurant and are currently missing out on this. With their direct payments, they are able to use the money to pay the restaurant owner his fuel money so he can deliver their food to their doorstep.
There is also the young person who cannot physically attend a community class and so is currently doing Zoom sessions using a laptop that was purchased with money from direct payments. This was helpful for her mental health and feeling of isolation.This is a great example for school aged children too who are currently home schooling and might be sharing a computer at home with parents and other siblings who are working from home.
Our needs are all different. Reading the document might just give you ideas on how you can use your direct payment money to help support you physically and mentally during this pandemic.
Whatever changes you make with your payments, it is important to discuss them with your social worker or the local authority. It is important to take note of these changes and to keep proof of use eg receipts of items purchased. This is so you can show that the payments were used in accordance to guidance.
The guidance also reminds us that it is also possible to apply for emergency funding during the pandemic if extra cost is needed in providing suitable care for an individual.
The guidance highlights the impact on PPE and communication between a PA, carer and the client. There is advice on how to overcome this barrier.
My criticism of the guidance is it is dated 18th November 2020. It therefore does not mention the new Coronavirus strains and its implications. It does not mention the vaccines and who might be elligible. I think this is a major thing to leave out as several people using direct payment will be in the extremely vulnerable category whether due to age or medical conditions.
The document refers to shielding as if it has ended. We have been in lockdown twice since the guidance was written. There needs to be a section advising the vulnerable to keep themselves updated by referring to government guidance below.
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’.
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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 .
My ‘Celebrating Women’ series continues today, celebrating one of the most optimistic women I know. I have known Srimal since 1988. We met in Adelaide, Australia where we were both in our first year in university as medical students. I honestly don’t remember a time when I have seen Srimal not smiling. The last time I saw Srimal was in 2015 when I was holidaying in Adelaide with my family. I remember us saying good bye at the airport, we both had tears in our eyes but Srimal still had that beautiful smile on her face.
Srimal is a General Practitioner in Adelaide. Despite being miles away from each other, we thank Watts App for the instant communication we can have! We also have a Watts App group and there are 6 of us on it, all communcating from different parts of this world and all still feeling as close as we were as medical students in Adelaide.
1. Please tell us about yourself Srimal.
I am an Australian General Practitioner. Life is hectic as I have to balance work commitments with parenting responsibilities. My son is finishing his final year of high school. We have always enjoyed travel, catching up with friends and attending live performances.
2. Where do you currently work?
I work in two general practices and enjoy the diversity offered by my career path as well as the opportunity to foster a long term professional relationship with patients and their families.
3. How did your responsibilities change as a medic during the pandemic?
During the pandemic our clinics adapted quickly to establish safety procedures such as using telehealth where possible, redesigning consulting areas and triaging patients to ensure that patients with respiratory symptoms were assessed through outdoor car park consultations.
We have provided face to face consultations throughout the pandemic. Our clinic owners took a fantastic leadership role and generously shared protocols to protect staff and patients.They labelled car parks as outdoor consult bays, set up screening procedures at reception and created visual cues to ensure social distancing such as duct tape lines to guide patients. I feel these measures were instrumental in risk reduction.
There was also sharing of ideas with colleagues through a social media group called ‘GP Down Under’. It made a huge difference in promptly implementing risk minimisation stategies. The effectiveness of these measures was also very evident in the dramatic reduction of influenza cases (flu). In February we anticipated a horror flu season. Thankfully, our public health measures resulted in dramatic results. Between January and June 2019, more than 132 000 were diagnosed with influeanza (flu). During this same period in 2020, 21 000 people were diagnosed.
4. How do you think Australia has dealt with the pandemic and how do the Australians feel about how the pandemic was managed?
Australia was fortunate to have low case numbers due to its geographical separation and open spaces and well spaced housing. Despite some initial errors with widespread testing, contact tracing helped Australia to recover and control clusters quite rapidly. Our disease burden has been largely restricted to hotel quarantine related outbreaks with Victoria being the only state to suffer long periods of lockdown
5. How has life changed for you and your family since the pandemic?
We have always enjoyed overseas travel which has not been an option. We have socialised in smaller groups since the pandemic and spent more time at home or with immediate family, which has had the positive effect of creating opportunities for family connection.
Although travelling overseas has stopped we have had the opportunity to find adventures within Australia. Since flying has been less safe, we took the opportunity to drive to Ulurru and Kings Canyon with friends, travelling over 3000 km in 8 days, spotting wild camels ,cattle and brumbies(wild horses) on the highway.
( Ulurru is Ayers Rock, and Kings Canyon is a National Park halfway between Alice Springs and Ulurru)
We also had the opportunity to see great white sharks aboard MV Rodney Fox on a 4 night trip. We were mesmerised by close ecounters with white sharks and enjoyed swims with playful sealions and giant cuttlefish. It has been a great opportunity to appreciate local tourism.
6. What are you looking forward to most in 2021?
I have been most looking forward to high rates of vaccination to transition towards eased restrictions.
7. Is there an interesting book you have read recently?
Following from Adelaide Writer’s Week I am inspired to read ‘Song of the Crocodile’ by Nardi Simpson, an indigenous author, poet and musician. Nardi provides unique insights into indigenous connection with the land, adopting a lyrical writing style. She was the most inspiring speaker at writer’s week, challenging the concept of unstable ground in her panel discussion.
8. What is your advice for young people, especially young women wanting to persue a career in medicine?
I have been fortunate to mentor students from our school robotics team and had the opportunity to mentor some students who have chosen to study medicine. Medicine offers a flexible career path with opportunities to reduce hours as needed to manage family commitments and attend school events. I still find medicine fascinating and full of surprises so it offers an interesting career path which remains challenging even after 25 years.There are many specialties to suit a variety of personalities and interests. Women are well represented in the profession, which helps with camaraderie
9. Would you like to share any special university memories?
Studying medicine has provided lifelong friendships and so many shared memories which keep our wonderful friends in our hearts, even with many years of being apart. Endless pranks with kidnapped back packs, cocktail parties with some questionable mixology involving tabasco, curry nights, canoeing trips with stars reflected in the water at night are just a few of the amazing memories which have cemented our lifelong friendships from our university adventures together. It has been amazing to watch our children bond so easily with each other, like family.
Let’s keep appreciating all who work in the health service. Those who have looked after the unwell to those who have kept our hospitals clean and safe during this pandemic. The health service, whether it be in Australia or the UK, is definitely an establishment that I am grateful for. Thank you for this virtual interview all the way from ‘Down Under’!
A Family Gained Through Friendship Is A Family Never Lost.
As the sun shines today, it reminds me spring is just around the corner. In the UK we have experienced snow, rain, storms and sun this February. A typical British weather experience, I hear you say. Coincidentally, the extremes of weather we have had in February also reflects what the pandemic has brought so far this year .
We have passed a year since we had the first Covid 19 case in the UK; January 29th 2020. The first death reported in the papers was on the 6th March 2020. At that time there were 116 confirmed positive cases of coronavirus.
There is at least 135, 600 deaths with Covid 19 as a cause of death on death certificates. What the media reports daily are deaths of people who tested positive in the last 28 days and this figure is currently 122,700 deaths.
Since the beginning of this year, we have seen the highest numbers of deaths and infections since this pandemic started. The UK had it’s highest recorded daily deaths on the 19th of January 2021 at 1360 deaths. The numbers of patients in hospital with Covid 19 also peaked this year.
Long covid numbers are rising and we are becoming more aware of this condition. The list of long covid symptoms is long. There are several clinics around the country set up to manage long covid symptoms. We have a NICE guidance for long covid 19 management.https://www.nice.org.uk/guidance/ng188
The evolving nature of the virus has caused developments of new strains that can transmit more easily.
There are people who were not asked to shield last year but now see themselves being added to the extremely vulnerable list and advised to shield.
There are also serious issues around the economy, mental health, poverty, education, untreated/postponed medical treatments and much more. What an eventful year we have seen just 2 months into 2021.
As we move into the month of March, we will experience easing of this lockdown. The developments of effective vaccines and the increasing confidence in the vaccines, gives us hope for a positive spring at least.
We have seen the vaccination programme moving on fast with many getting their second vaccines already. My husband and I will be receiving our second dose next month.
The recent media coverage of Jo Whiley, BBC Radio 2 DJ, being offered the vaccination before her sister with a learning disability, and input from organisations like MENCAP has made it possible for all adults with a learning disability to be prioritised to receive the Covid 19 vaccine.
My youngest daughter is excited about going back to school. She has been getting daily lessons on zoom at home during normal school hours but she feels it’s now time to be back at school. She has kept up with homework and tests, however after doing it for almost a year the novelty is fading and it is getting tiring.
March is a month of birthdays in our family. My husband and I have birthdays just a week apart from each other. My brother in law and my sister also celebrate their birthdays this month. I thank God for giving me another birthday with my family.
I started writing my second book at the start of January and I aim to finish my first draft by the end of March.
Hope is in the air for the month of March. Let’s hope it spills into April too. It’s not always possible to ‘Live in the moment’ but sometimes it is necessary to keep us refreshed and recharged to keep going.
I want to thank everyone who has followed my blog and social media sites. I also thank everyone who has bought my book ‘Our Family’s Journey Through Disability and Cancer’ which was published in October 2020. I have donated money to Clic Sargent Cancer Charity and Down Syndrome Association from sales of this book.
Wishing you a safe and healthy spring. Hope the sun keeps shining for all of us in March.