Friday, 14 September 2018

And exhale!

 

“And will you succeed?
Yes! You will, indeed!
(98 and 3/4 per cent guaranteed)

Dr Seuss

 

He has done it!

I am very proud to say that my wonderful, supportive husband has made it to the summit of Mont Blanc today raising over £4500 for the amazing work of The Ellen MacArthur Cancer Trust and the total is still rising! Thank you so much for all your support and encouragement.


Martin is quite an experienced mountain climber but has found the climb very challenging which I guess makes the achievement even more sweet.   There is still time to add to Martin's total via this link.




Fortycubed has done it!


From being the most sceptical about the fortycubed challenge to being the biggest supporter, Martin has wrapped up the Fortycubed fundraising year with this final challenge. There is likely to be a little more to add to the total but I can confirm that the Fortycubed £40,000 target has been smashed and stands at a whopping...
 
 

£44,150.47!!! 

 

Thank you for all the love, encouragement, support and donations that will touch the lives of so many people ❤️ 

 

Over to you #40butnice

 


 

Friday, 17 August 2018

The Gift








'Devote today to something so daring even you can't believe you're doing it'

Oprah Winfrey


As I was selling the final few tickets for the Gala Dinner this time last year, I met Sarah. She signed up for the last two tickets and her enthusiastic support and friendship has been a birthday gift that lasted all year.

Then she stunned me with a proposal

 
Over a birthday breakfast Sarah mentioned that she would turn 40 almost exactly a year after me. Despite an immensely busy life working in London and raising two very small children, Sarah was considering taking on the 40th Birthday fundraising challenge from me at the end of my Fortycubed year.

Handing the baton over to Sarah - #40butnice


'Last September, I was fortunate enough to find a window through my sleep-deprived parenting fog to hear about and snap up the last two tickets to the Fortycubed Gala Dinner. And what an adventure that began!

Enthused by the - quite frankly ingenious - idea to seize the opportunity to celebrate a daunting milestone by drawing together all your favourite people, to get glammed up and raise money and awareness for causes close to their hearts...I asked Jac if I could take her out for a birthday brunch so that I could spend some time eating, chatting and getting to know the brain behind this brilliance.

Little did I know, as I greedily quizzed my brunch guest - and even more greedily munched on my smashed avocado and poached eggs at the gorgeous Coppa Club- that a passing quip that ‘someone should take on the baton next year’ would result in a panicked realisation on the drive home that I was turning 40 exactly a year later ...and a subsequent burning need to then pursue and fulfil the baton-wielding responsibility!
Inspired by Jac and driven by the desire to do something following the untimely death of a beautiful school friend of mine, #40butnice came into being.

Celebrating the craft-loving, marathon-running, coral-lipstick wearing, cheesy-music-dancing, Christmas-loving life-force and all-round splendid human being that was my great friend Vicky Priest, the Eve Appeal is at the heart of my fundraising - raising money and awareness of gynaecological cancer.




But the Gatsby-themed charity ball at Reddam House on Sat 22nd September will see over 150 guests raising cash and awareness for many more fantastic causes too. Tables of ten are partying their hearts out and supporting a different charity each with a great range of local, national and international charities in the room including Clic Sargent, Chemogiftbags, Reading Refugee Support Group, Welsh Hearts and The DPJ Foundation.

So feel free to join us. Tables are pretty much sold out but I am delighted to be able to now offer a drinks and dancing ticket for the event. For more details and to purchase tickets please follow 40butnice on Instagram.'

Farewell to Fortycubed 
 
The Fortycubed Fundraising year is not quite at a close. My husband will attempt to climb Mont Blanc in early September raising funds and awareness for The Ellen MacArthur Cancer Trust. The final Fortycubed total will then be announced before the baton is passed on to Sarah at 40butnice in time for the Gatsby themed charity ball where Fortycubed will be hosting a table raising funds for Clic Sargent.







Friday, 20 July 2018

Grassroots Trust - A Little Goes A Long Way





'Not all of us can do great things.  But we can do small things with great love.'
Mother Teresa 


Keeping administration and staff costs low; working alongside existing charities already on the ground; providing the essentials rather than luxuries.  The Grassroots Trust is able to make donations go further with a stripped back approach to charity organisation and fundraising.  

Now working in Tanzania, Kenya, India and Romania, Grassroots reaches out to the most vulnerable.  The governments of these countries do not provide free education, healthcare and child benefit.  Grassroots is a Christian charity that offers a Child Sponsorship programme to bridge the gap.  Offering a weekly meal with fresh water and daily milk for pre-schoolers, Grassroots focuses on providing the bare essentials.


Child sponsorship options start at just £3.50 per month with a minimum of 100% spent on the individual child.


Alongside the sponsorship programme, the charity has come up with a number of 'alternative gifts' that can be purchased ranging from 'flip flops' to 'a community well'.   




I have the privilege of working with a Trustee of The Grassroots Trust and was delighted to add it to the Fortycubed list of charities.  If you would like to make a donation to The Grassroots Trust please do so via this link.

Friday, 6 July 2018

British Heart Foundation




'Above all else, guard your heart, for everything you do flows from it'

Proverbs 4:23 


Our local school community is currently reeling from the sudden loss of a father to a heart attack. There are 7 million people living with cardiovascular disease in the UK. The mission of the British Heart Foundation is to win the fight against cardiovascular disease and their vision is a world in which people do not die prematurely or suffer from cardiovascular disease.




Karen, Lyndsey and I have spent many hours walking together - often in extreme weather conditions. Both of these friends support the British Heart Foundation because of their friends Sharon and Alexander.


Sharon


Karen's friend Sharon died at just 38 years old leaving her husband, Neil to raise two very young children. Neil writes:

'We lost Sharon in May 2013 from Sarcoidosis of the heart. Before she passed we weren’t aware of what she had but we were constantly at the hospital for tests to determine the problem. Sarcoidosis is something that can affect organs but usually affects the lungs. My best understanding is that it is very rare (a handful of cases in the UK) to have sarcoidosis only in the heart and the only way to determine if you have it would be through a biopsy of the heart which itself brings many risks and would only be found if the biopsy took the part which was affected. Sharon’s heart would often beat too quickly and had a pacemaker fitted which would reduce this. British Heart Foundation are the biggest funder of cardiovascular research in the UK and any money raised could support much needed lifesaving research.'


Alexander



Alexander Lang was born on the 4th January 2016. He had his first open heart surgery when he was just one week old and spent the first 6 months of his life in between Ocean Ward and PICU at Southampton Hospital. Lyndsey writes:


'Alexander is now two years old, and has just gone through further surgery. Watching your dear friends look after a poorly child is difficult, and you feel totally useless not being able to do anything to ease their worries and concerns. A simple cough or cold could be fatal, so often the family are isolated to keep Alexander away from harmful germs. I don’t think they have had a full, uninterrupted night’s sleep in two years.

I have been very lucky that my husband (James Lapthorn), niece (Katie Rivers) and close friend (Claire Nunn’s) little boy have all had life saving heart operations and are now very well looked after by the various hospitals they attend. My uncle died when he was a child as he had a hole in the heart. This could now be repaired with today’s advancement in surgical procedures and early detection at the routine 20 week pregnancy scan. Before the BHF existed, the majority of babies born in the UK with a heart defect did not survive to their first birthday. Today, thanks to research, around eight out of ten survive to adulthood.

Your money helps to fund hundreds of top scientists all over the UK, including the work of BHF Professor Shoumo Bhattacharya, whose team is investigating the genetics behind why some babies are born with heart problems, with the ultimate aim of preventing them altogether.'


If you would like to support the British Heart Foundation as part of the Fortycubed challenge please do so via this link. The BHF spend 76p of every £1 raised on life saving research and support for heart patients.

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




Saturday, 26 May 2018

Bliss - For babies born premature or sick


'And though she be but little, she is fierce'

William Shakespeare


I stood with my friend this morning as she waved her now 14 year old daughter off on an outward bounds trip to North Wales.  She is the hope and dream of a parent currently sitting beside an incubator in the Special Care Baby Unit. 



This is Louise's story


'When I was 29 weeks pregnant with my first child I became very ill. I went straight through pre-eclampsia to full blown eclampsia. One ambulance ride later, my daughter was rudely evicted from her growing place, wrapped in bubble wrap (my husband asked if she came delivered in that!) and taken off to Special Care Baby Unit. (SCBU). Weighing 2lbs 9 oz to start (dropping down to 2lb 4 oz).

All the normal experiences that I had been expecting didn’t happen. I never saw those nice delivery rooms with baths and relaxed music playing. Instead for 36 hours I didn’t even get to meet my new daughter but just had a small polaroid picture of her that a nurse had taken. Then when I was well enough to be wheeled through to see her I couldn’t get her out of her incubator but only touch her through little panels. It seemed very surreal. I knew she was mine but was missing all those first moments.






However Leah got bigger. With the help of the amazing staff she started taking liquids - 0.5mls every other hour. She came off her ventilator and could be got out of the incubator for short periods for cuddles; then she took some milk and gradually got bigger. Every gram was counted!

She progressed from intensive care to special care, eventually to the room they called nursery. Leah came out of hospital 6 and a half weeks later weighing 4 lbs 5oz.

It’s a bizarre experience having your child early. Leaving hospital without them every day. You fall between the gaps, not under the care of the hospital, not under the care of the community health visitors as you’re never at home. Navigating all this new information, emotions and the daily rollercoaster that is the progress (or lack of progress of a premature child).

I was given a book with the contact number for Bliss if I needed to talk to anyone but to be honest I never called. I was too busy getting on and I was in a fortunate place, I had a great support network; people who drove me to the hospital every day so that I could spend the days with Leah while Chris went back to work and friends that supported and got excited about my beautiful child, but there are many who do not have that or are dealing with older children at home (I can’t imagine how pulled they must feel).

A couple of years later my friend had a premature baby. She was at a hospital where they had a Bliss worker and I saw the amazing work that they did, helping my friend process all that was happening. Bliss have an aim to have a contact in every hospital with a SCBU. Having a premature or sick baby can be both stressful and frightening. If you are able to bring your baby home the full impact of what has happened over the previous few weeks can be overwhelming. Memories of the birth can come rushing back and parents may show signs and symptoms of trauma.'


Bliss

The charity Bliss can offer emotional support and practical advice to the parents. Bliss also mounts political and awareness campaigns to help those affected in the future.


If you would like to support the work of Bliss please do so via this link. Medical progress has made leaps forward in survival rates but supporting those parents both emotionally and practically will help families affected by premature birth to both survive and thrive.

Thursday, 10 May 2018

Harrison's Fund






'Banished to this cave, Father Time must listen to the world's every plea - for more minutes, more hours, more years, more time'
Mitch Albom, The Time Keeper

Time is precious.  Families battling Duchenne are acutely aware of time, and their lack of it. Duchenne Muscular Dystrophy currently affects 2500 children in the UK. Children with Duchenne are unable to produce dystrophin, an essential component in muscle growth. As a result, their muscles waste away one at a time. Children with Duchenne are typically wheelchair bound at the age of 12 and can suffer respiratory failure, heart failure, and other debilitating orthopaedic complications.

Duchenne is a ticking time bomb.  It is 100% fatal.  There is no cure.


But there is hope. Harrison’s Fund has one goal - 'to get as much money as possible into the hands of the world's best researchers, who are working to find a cure for Duchenne. New advances in gene therapy and molecular medicine are being made and it is clear we are on the cusp of a major breakthrough'.

#maketime 

Harrison's Brunch is an annual event held to raise funds and awareness of Duchenne.   The charity asks you to take time out for food, friends and family this June and raise money for Harrison's Fund.  The money raised through Harrison’s Brunch this year will go to fund the clinical trial of pioneering new drug Carmaseal, which could be vital in the battle against Duchenne.


 

Fortycubed for Harrison 


When I was narrowing down the list of charities to include on the Fortycubed list my good friend Claire was undergoing chemotherapy for Breast Cancer.  I asked which charity she would like me to support in her honour and I had wrongly assumed it would be a cancer related charity.  She has a friend living in Australia whose son has Duchenne. Claire identified Harrison's Fund as a UK based charity fundraising for research and raising awareness of Duchenne.  She hosted a table at the fundraising dinner in October and so far we have raised £340 for Harrison's Fund but we want to raise more!  

Please get in touch if you are able to host a fundraising brunch in June or at any other time of the year!  #maketime




 

Friday, 27 April 2018

The Story So Far - 27 April 2018



It has been a while since I gave an update on the fundraising total but with 5 months still to go in the Fortycubed fundraising year, things are looking good!  Thanks so much for all your support!

 

Upcoming Events


May 2018
On the first May Bank Holiday my friend Mike is taking part in a skydive to raise funds for Autism Berkshire as part of the Fortycubed campaign...and he is afraid of heights!  He is just £5 off his £1000 fundraising target.  Thanks Mike and good luck!

Join the party from the comfort of your own home! Raise money for Alzheimer's Society by joining the Fortycubed Eurovision Sweepstake for just £3 per entry. Prizes for the winners of each semi-final and a grand prize for the overall winner. To enter add your £3 donation to the Just Giving page www.justgiving.com/fortycubedforalzheimers and I will let you know which country you have drawn so you can follow their progress through the competition! Good luck!

June 2018

The Link Visiting Scheme aims to reduce loneliness, to promote friendship, to celebrate and honour older people in our community.  This year the organisation celebrates its 20th Birthday and we have hatched a plan to hold a Singalonga Sound of Music fundraising event at The Whitty Theatre to celebrate!  We want to fill the theatre with singing nuns, Julie Andrews lookalikes or any other direction your creativity takes you! Tickets can be purchased via this link. Only 170 tickets are available!

The week ending 22nd June is Cystic Fibrosis Awareness Week and Fortycubed will be co-hosting a fundraising coffee morning with a couple who have a grandson with Cystic Fibrosis.  It is 'Wear Yellow Day' so wear something yellow; bring a yellow cake or simply bring a shiny 'yellow' pound coin to donate and don't forget to share your #yelfies on social media!
 

The 40 fortycubed charities