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
This is a link to the full report. https://teenagecancertrust.org/sites/default/files/Cancer-coronavirus-report-June-2020-Teenage-Cancer-Trust.pdf?_ga=2.148863351.1516378328.1600434305-1972425621.1549297661
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.
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Twitter @JH_blogger, Instagram @medic.mum and Facebook Listen2mythoughts.
Stay safe and Keep Healthy.