Monday, 25 June 2018

Teenage Cancer Trust

Being a teenager is a tough even without a cancer diagnosis. It is heartbreaking that around 7 young people (aged 13-24) are diagnosed with cancer every day in the UK.  

The young man who inspired the addition of the Teenager Cancer Trust onto the Fortycubed list passed away on Boxing Day this year.  
The Trust knows and understands that having cancer at a young age comes with its own particular set of challenges. Their services put the needs of young people first and allow them to face those challenges together.
One young woman described her experience: 

'As soon as I walked onto the Teenage Cancer Trust unit it was so much better than a normal hospital ward. At Rotherham I’d been the youngest on the ward by 20 years, and even though I had a private room, there was nothing in it really. When I went onto the Teenage Cancer Trust unit I was shown my room, and I was actually quite excited! I loved that I could have a TV, that I could have a shower without someone having to be there with me, and I could regain a bit of my independence. I’ve always called it ‘my bedroom’, not ‘the hospital room’, and I think that sums up exactly how comfortable I felt on the unit.
I met Shona, the Teenage Cancer Trust Nurse straight away as soon as I arrived. She stayed to welcome me onto the unit, even though it was 7pm and no one else was around. When I was at home she would visit me at my house to come and change my picc line, she’d stay for a cuppa and chat to me about how I was doing. It was so nice because it meant I didn’t have to go to the hospital every week. And if I wanted anything arranging for the next time I was in, she could do it for me – like coming in for my chemo at 3pm instead of 12pm so that I could plan to do stuff with my friends.'

Teenagers vs Cancer: A User's Guide

The Teenage Cancer Trust has been working with Patron, Roger Daltrey,  BBC Horizon and other cancer charities to produce a new documentary film showing the benefits that specialised nursing care and support brings for teenagers and young adults. 

'Teenagers vs Cancer: A User's Guide' follows the stories of eleven young people with cancer to see how they have dealt with their cancer experience, from diagnosis through to treatment and beyond. It's an incredible opportunity to hear from young people directly, in their own words, about their experiences, their thoughts and advice, and their hopes.
The show will air on BBC 2 on Tuesday 26th June at 9:30pm or you can catch up afterwards on BBC iPlayer.  

To make a donation to the work of the Teenage Cancer Trust please follow this link.


Monday, 11 June 2018

Feel the fear and do it anyway!

'Never grow a wishbone daughter where your backbone ought to be'

Clementine Paddleford


Claire's Story

Sounds are what I recall most about our family's experience with Prostate Cancer.
......The sound of my strong, handsome dad sobbing uncontrollably down the phone as he told me he had 6 months to live
......The sound of my mum's frantic phone call, just 4 weeks later, telling me that dad was having a "seizure”
......The sudden understanding of the term "deathly silence " when I arrived at their house expecting the hustle and bustle of the paramedics inside
......The sound of my brother scream every inch of his heart out when I rang him that morning on his business trip in Florida
......The sound of my mum's fear as her safe harbour crumbled and disappeared
......The sound of my heart breaking.

Even now, 6 years later, I can feel every sound in every part of my being.

These sounds are the result of our family's battle with Prostate Cancer and my quest since has been to raise awareness and funds for this silent killer.

So, now that I have your attention, let me share some happiness. Our dad was awesome and today I stand proud in the strength he gave us.

He taught my brother and I to “feel the fear and do it anyway”......but safely. Although I am sure this approach left our mum rocking silently on many occasions, we had so many adventures where he taught us how to embrace the challenge, make a solid plan and then just do it! And today, in-spite of my inner scaredy cat frequently screaming “you can’t do this, this is bigger than you”...... I shout back “just watch me” and for that I am eternally grateful. 

So, let’s get to the REALLY important bit as to why I bang my drum. My dad was beyond “well” for his age with his fitness levels putting most 20 year olds to shame and he had no signs or symptoms at all. His prostate cancer was only picked up on a routine blood test and unfortunately, due to the nature of the disease progression, it was never going to end with smiles. But his general “health” had most people fooled that all was well, right up until the end.

Prostate Cancer claimed the lives of 11,000 men in the UK last year, overtaking the number of deaths due to breast cancer, however if caught early, Prostate Cancer is very treatable and curable. Which is why the work of Prostate Cancer UK is so important as they provide disease awareness, support, specialist nurse helplines, and critically, research into finding better diagnostic tests and treatment. 

So if you have a prostate or know someone with a prostate, please check out this link to learn more about this disease and this link to make a donation via the Fortycubed challenge.

For my dad, Mike Downes HRD (His Royal Dodginess) x

Sunday, 3 June 2018

The Fortycubed Book List

'I went there once in a book' 

Tabitha Jones


Great comfort can be found in being with other people who 'get it'; those who sit with you in your pain, your grief or your fear and understand.  They understand they cannot solve it; heal you and no amount of advice will change how you feel.  

Many of the charities on the Fortycubed list are close to my heart because of my personal experiences but some are on my heart because they supported someone I love or because my eyes were opened through reading a book.  

The following books have touched my heart and increased my understanding as part of the Fortycubed challenge.

'The boy in 7 billion' by Callie Blackwell and Karen Hockney

This book tells the harrowing but inspirational story of Deryn and his mum, dad and brother and their journey with cancer.  The Ellen MacArthur Cancer Trust is a national charity that seeks to rebuild young people's confidence after cancer, using sailing to support, empower and inspire young people.
Callie recalls the impact of the Ellen MacArthur trip Deryn enjoyed after months of gruelling treatment:
 'The boy I sent away on that minibus - a boy with no confidence, a shadow of his former self who was too scared to go outside in case he caught a bug or hurt himself - was certainly not the same boy they delivered back to me five days later.
The Ellen MacArthur Cancer Trust gave me back my son.' 

'Why does he do that? Inside the minds of angry & controlling men' by Lundy Bancroft



This book gave insight into the complicated nature of domestic abuse in all its forms including stalking, coercive control, emotional abuse, physical abuse, sexual abuse, economic abuse, gaslighting and harassment.  If you read this book you will never again ask 'why doesn't she just leave?'

'One of the greatest tragedies of all forms of domestic abuse is that the abused person can become emotionally dependent on the perpetrator through a process called traumatic bonding. The assaults that an abuser makes on a woman's self-opinion, his undermining of her progress in life, the wedges he drives between her and other people, the psychological effects left on her when he turns scary - all can combine to cause her to need him more and more...Almost no abuser is mean or frightening all the time.  At least occasionally he is loving, gentle and humourous and perhaps even capable of compassion and empathy.  This intermittent, and usually unpredictable, kindness is critical to forming traumatic attachments.  When a person, male or female, has suffered harsh, painful treatment over an extended period of time, he or she naturally feels a flood of love and gratitude toward anyone who brings relief, like the surge of affection one might feel for the hand that offers a glass of water on a scorching day.  But in situations of abuse, the rescuer and the tormentor are the very same person'

'Power and Control - Why charming men can make dangerous lovers' by Sandra Horley 

Sandra Horley CBE is the CEO of Refuge, the charity working for women and children and against domestic violence.  

Power and Control is the real story of domestic violence, a story of men whose charm hides a darker truth – the ability to inflict devastating emotional and physical damage. But ultimately it is a story of courage and strength, told by women who have reclaimed their lives so that others may too.

The reason I run - Chris Spriggs 

I read this book to gain insight into Motor Neurone Disease and also because the two men 'transforming tragedy' were related to twins in my daughter's peer group. It was an inspiring read that made me laugh and cry in equal measure.  Not only did I learn about MND and its impact on the whole family, but I was shocked to find that the 'silent killer' of ovarian cancer had also touched their lives.  My mum died of ovarian cancer at just 52 years old.  

This book also made me consider taking up running...for a moment or two!

'No Filter' by Grace Victory

Grace Victory shares (among lots of other things) honest reflections on her relationship with her body over the years and her experience of eating disorders.  I will be making sure my daughters read her harrowing but inspirational story to help educate them for their own sake and to arm them with information that will help them look out for their friends.  Her courage in sharing her vulnerability is an example to us all.


'Cutting for Stone' by Abraham Verghese

I’m ashamed to say I had never heard of fistula until I read this novel about a decade ago.   The doctor in the story referred to a particular case of a young girl making her way to the hospital after having been cast out by her village and eventually, her own family.  Incontinent as a result of an obstetric fistula, with each step she would be leaking urine but she was driven on by the knowledge that this hospital offered hope and with a simple operation, she would be able to live a normal life again.  She would be able to return to her home, work and even choose to have children again in the future.   

‘Half the Sky’ by Nicholas Kristof and Sheryl WuDunn


It was only when I read ‘Half the Sky’ that I appreciated how common fistula still is in parts of the world.  Every 2 seconds a woman is seriously injured or disabled through giving birth and an estimated 2 million women and girls in Africa are suffering from obstetric fistula caused by prolonged, obstructed childbirth and lack of access to maternity care. Due to their associated incontinence, they are often subjected to a life of isolation.

'My Son's not Rainman' by John Williams 

'The thing is that we only really celebrate disability when there’s a skill involved. Take the Paralympics, incredible as they are, they’re all about strength, courage and bravery. All I really wanted to do was to celebrate the smallness of it all, of just being in the world without justification. There’s joy in the little things … and humour and laughter.'

I learned so much through talking to my friends in preparing the blog post on Autism.   At the same time I read this book by John Williams who opens the book with a quote from an unknown source which sums up beautifully how we, as friends and family, could rethink how we approach Autism.

'I would like to travel the world with you twice.  Once, to see the world.  Twice, to see the way you see the world.'

Who is Tabitha Jones, author of the quote 'I went there once in a book'? 

I went to school with Tabitha and we are now only 'Facebook friends'.  This quote was her response to a photo of a beautiful scene in Italy or somewhere equally romantic. I included it here as I have shared it many times since she wrote it and she will, up to now, have had no idea.  It demonstrates that if you want to really understand and support someone, you may need to walk a little in their shoes...if only through the pages of a book.

The more that you read, the more things you will know. The more that you learn, the more places you’ll go. —Dr. Seuss