Friday, 24 February 2017

Tales from Ambridge


Don't be ashamed of your story. It will inspire others.

 
Two of my guilty pleasures can be enjoyed simultaneously in the comfort of my own home - ironing and listening to The Archers.  There is no plausible explanation for my love of ironing but The Archers is a different story.

The clinking of the tea cups, the endless days of inconsequential conversations in the village shop or out in the open surrounded by the rumbling of sheep or cows; the clattering of a rusty gate; the grunts and other (in)voluntary sounds of exertion as characters lift hay bales, hooves and venison casseroles whilst lamenting the wayward antics of the Ambridge 'youf' or the young farmers.  It is a different world of escapism where the mundane becomes enthralling.  As Edward would say, The Archers is like 'my own personal brand of heroin'.  No not Ed Grundy - Edward Cullen from Twilight. I digress.

Events take a turn

Threaded through the portrayal of a pastoral idyll, there are one or two stories that vie with Eastenders for their gritty nature.  The storyline featuring Helen and Rob Titchener awoke me from my comfortable reverie.  The medium of radio soap proved to be highly effective in demonstrating the effect of constant chipping away at a person over a long period of time.  The Archers is free from the consumer led time limitations of a feature film.  Archer fans are invested in Helen and all Ambridge residents, even if we sometimes despair of the writers.

When we read about people staying with a violent or controlling partner it seems so clear; so black and white.  Yet as we listened to Rob's requests we, as the listener, were not sure to begin with if he was genuinely wanting the best for Helen.  The sense of her own self worth and self confidence ebbing away was palpable. As his abuse becomes undeniable, the listener is forced to reflect.  At what point did I, as the listener, recognise Rob's overpowering 'love' as the abuse and control it really was.

Soap imitating life

I cannot use the case studies of friends directly impacted by domestic abuse to illustrate the need for the work of the charity Refuge.  The impact of sharing often falls on the shoulders of those children already carrying a heavy burden. 

Refuge has kindly allowed me to share some of their case studies.  Refuge supports more than 4,600 women, children and men on any given day through a range of services including refuges and community outreach.  Two women are killed by a current or former partner every week in England and Wales.  Refuge campaigns to educate the general public and lobbies the government with the aim of preventing domestic violence. The charity does not believe you can take a 'one size fits all' approach and responds to individual needs of every woman, man or child they support. 
 

Refuge Case Study - Diana


Diana was with her ex-partner for five years during her twenties. He seemed caring at first, but quickly became controlling and aggressive. His physical abuse began when Diana was four months pregnant with their first child. The violence soon escalated to strangulation, kicking and sexual assault. Whilst Diana had several miscarriages caused by violent attacks, she went on to have a daughter - and left her partner 10 weeks later. 

With the support of the National Domestic Violence Helpline, run in partnership between Refuge and Women’s Aid, Diana was referred to a refuge, where she and her children stayed for six months. The specially trained staff at the refuge supported Diana to make an application for housing and benefit assistance and supported her to re-enter education, which her violent partner had previously prevented. 


Diana’s first child Michael is autistic. Michael benefited enormously from receiving support from Refuge’s child support worker who enabled Michael to overcome his experiences of domestic violence. At the refuge Diana was able to watch her children play happily and safely, without fear of violence, for the first time in years.

After Diana left the refuge, our team helped her furnish her new home and put her in touch with other support services in her local area.  Diana says, Refuge didn’t just give me a place to stay. They gave me something far better than that. They gave me me’... Without Refuge I would still be with him. Or worse, not be here at all.” 


Refuge Case Study - Tara

Tara, her mother and brother experienced years of abuse and death threats from her father. After one particularly violent attack they escaped to a refuge. Tara was 10 years old. The security of the refuge and the secrecy of its location allowed the family to feel safe finally. Over the next six months, with care and support from the refuge staff, Tara’s family started to rebuild their lives. 

Tara says, We arrived in the refuge jumpy and scared – but we left as brave, fresh-faced people ready to face our new life and overcome obstacles in the future. I'll always be grateful to the staff at Refuge.” 

In her shoes

For the friends of mine who have experienced domestic abuse, by the time I knew them it was a stage of life that was firmly in the past.  But it is happening now and Refuge helpfully outlines some of the warning signs (click to learn more).  Refuge will be one of the 40 charities I will be fundraising for as part of my fortycubed 40th birthday celebrations.  If you would like to donate directly to Refuge please do so via this link.








Saturday, 18 February 2017

Diabetes UK



#️Squad Goals


We were away overnight with a group of friends and at dinner I was sat next to James and opposite his wife, Louise.  Always a cheerful and friendly chap, James was chatting away to me but started to look a little sweaty and distressed.  Alert to the signs, Louise immediately noticed the difference and quickly escorted him out of the room so they could test and readjust his blood sugar levels.  I already knew that James was diabetic but this was the first time I had witnessed how this affected his daily life.

When I announced my fortycubed plans to some friends I could visibly see their fear that I would be asking for sponsorship from them at every opportunity until I reached the £40,000 target!  Not so with James and Louise.  They welcomed the idea with such enthusiasm and then after discussing it at home, decided that they would like to get involved and take on raising £1000 of the total target themselves for Diabetes UK.  I was so touched when James held his 40th birthday bash and instead of gifts, asked for donations to Diabetes UK as part of the fortycubed challenge.

Symptoms and Diagnosis


James has Diabetes Type 1 and  most cases occur in childhood or adolescence.  Symptoms include going to the toilet more, being extremely thirsty, tiredness and weight loss.  If untreated or unmanaged it can be fatal.  James was 16 years old when he was officially diagnosed by his GP via a blood test to read his glucose level.

Impact on daily life


James believes that treated well, Diabetes Type 1 can be managed effectively and doesn’t prevent you from doing what you want to do in life.  

'With my friends looking out for me I have climbed mountains in Snowdonia, mountain bike regularly with them at the weekends, swim a few kilometres every week and we recently skied as a group in Austria, doing some of the most challenging pistes I have ever tackled (at the ripe old age of 40!). So keeping fit and having the right diet is essential in maintaining  your health, especially if you have Diabetes. However, there are occasions where blood sugar levels can drop and cause disorientation, which causes my wife and kids to worry about me, especially if I’m out and about by myself or away on business.'  
  

Diabetes UK


Diabetes UK is actively engaged in raising awareness and promoting better health and more conscientious care for Diabetics to take care of themselves. Diabetes UK provides extensive funding for United Kingdom-based research into the causes and treatment of Diabetes and its complications. If enough time and money is invested into this area, within our lifetime, Type 1 Diabetes could be a thing of the past. But this research needs significant funding to create a vaccine for future generations.

James and Louise will be hosting a table at the Fortycubed Charity Dinner in October. If you would like to make a donation towards the work of Diabetes UK please follow this link to the fortycubed JustGiving page.

Sunday, 12 February 2017

RP Fighting Blindness

 

'Kindness is a language that the deaf can hear and the blind can see.'

Mark Twain

The new girl in town

Becky is a breath of fresh air.  Her ability to include everyone and treat everyone she meets with compassion and kindness is inspirational.  When she told me that her sister was involved in a charity called RP Fighting Blindness I wanted to find out more and to add it to the list of 40 charities I'm supporting to celebrate my 40th birthday. 

 

What is RP?

Retinitus Pigmentosa (RP) is an inherited condition of the eye that gradually destroys the retina leading to loss of vision and often, total blindness.  'RP' is the leading cause of blindness in working age people affecting around 20,000 individuals in the UK alone, yet most will never have heard of it. 

Sufferers often notice difficulty seeing at night and in low light first and a lack of peripheral vision: bumping into low level objects or tripping over uneven floors or kerbs. As the disease progresses, they start to experience a decline in their reading vision, colour vision, and central vision. Similar to trying to look through a pin prick in a piece of paper - sight is eventually lost.



Becky and Rachael's story

...In Becky's words 

'Rachael Neville, my sister, has RP and has always had very poor night vision - relying on other people to guide her around after dark, in theatres, cinemas, pubs and clubs for as long as she can remember.  She was formally diagnosed with RP at 14 years of age after an optician noticed dark spots on her retina during a routine eye test and referred her to Moorfields Eye Hospital for further testing. The diagnosis back then was accompanied by very little information about the disease and no hope of treatment - just an expectation that by 30 she would have lost all sight. A shocking discovery for someone with their whole life ahead of them.
 

It wasn't until her mid-thirties that she noticed a rapid decline in her daytime peripheral vision and went to see her consultant. It was then that she was officially registered blind. She had just become a mum for the first time to my beautiful nephew and felt extremely vulnerable and frightened. Negotiating busy London streets, with limited sight and a buggy were to become a reality and later, with a toddler and newborn.  RP Fighting Blindness gave her much needed support and helped her to connect with other people with RP, share tips, and find information on research and assistive technology.  

She is now a trustee of the charity and runs the London support group. She uses a white cane (like a pro!) to help her navigate around the busy streets of her home town in Brixton and is dedicated to raising awareness of the condition - taking part in TV interviews and RNIB adverts to spread the word and increase understanding of living sight loss and the challenges involved both physical and in interaction with the community.'

RP Fighting Blindness

There is currently no cure for RP, but the medical charity RP Fighting Blindness is working hard to stimulate and fund cutting edge research - including gene therapy, stem cell therapy, gene editing and optogenetics - to find a treatment.  

The charity also provides support to those affected including patient information days, family conferences, a dedicated helpline and regular newsletters.  Medical research is  expensive and funds are desperately needed to ensure that future generations won't have to face a future without sight. 

For more information about the work of RP Fighting Blindness, see their website or to donate please follow this link.


Becky will be hosting a table for RP Fighting Blindness at a charity dinner on Saturday 14th October 2017.  This event officially kicks off a year of fundraising for this and the other 39 charities.

Wednesday, 8 February 2017

The Silent Killer


Now we know the signs and symptoms it seems obvious.  We thought she was just getting older and broader as most of us do.  We advised (nagged) her to do more exercise and eat more healthily but her tummy continued to grow.  She found she was quickly full and would struggle to eat a proper meal but was always bloated.  Her GP decided she was constipated and prescribed her a very effective course of laxatives.

By the time she was admitted to hospital after weeks of laxatives and very little food, my mum was lost in a fragile, bony frame still with a large protruding tummy.   They took litres and litres of fluid off her tummy on several occasions over the next 19 months.  

She sat alone behind a curtain on a busy ward when they told her it was likely to be cancer.  The nurses were relieved to see a relative arrive shortly afterwards but at 18 years old, dealing with the shock of the diagnosis was all I could manage. Mum ended up being the comforter rather than the comforted.  

Only a few days later they operated.  While she was still recovering from the anesthetic they told my dad that it was inoperable and had spread from the ovaries to the bowel.  They said that she definitely would not be with us in five years time.  Mum knew when she woke up that they had not removed anything so feared the worst and was actually relieved that they had referred to years rather than weeks or months.   

Hold on tight - it's going to be a bumpy ride!

The next couple of years were the rollercoaster the doctors had predicted.  But the heavy blanket of the terminal diagnosis could be shrugged off every now and then.  We had an amazing week at the Bristol Cancer Centre (now Penny Brohn UK) where we met other people facing similar trials and we tried all sorts of complementary therapy (art and music therapy gave the best laughs), we meditated for over an hour a day, ate a vegan diet and practised cancer Chi Gong each morning.  Aside from meeting wonderful people, one of my best memories was of mum and I sneaking off to the pub every afternoon during our 'rest time' for a pint and a packet of peanuts.

We used to dream of writing a book together once her body had proved the doctors wrong.  We were going to take it in turns to write a chapter each and we had agreed on the title; 'The Good Stuff about having Cancer'.  Despite the slow and painful crawl towards her death, we shared hope and love in a level of concentration that time would have watered down.  We also had a lot of fun.


And then Mum died

Shortly after mum's death I wrote a note about how I was feeling.  It was a note that I never intended to share with anyone but it seems appropriate to include it here.

Forgive me for not ringing.  I've a problem with saying it out loud. In my head I can recall every detail of her death; her frailty; the painful moans.  I can hear her weary breaths and I can smell death. I can indulge in the pain of missing her but smile when I turn to memories; when I look at things I know she loved to see; hear things that she would have laughed at.  I can dig a hollow in my heart when I turn over and over again everything she had to go through; everything we tried.  I can be proud of the way we've all coped, knowing we owe our strength to her.  I can roll my eyes remembering some of the thoughtless comments made by ignorant people as we struggled on with our journey.  I can feel her soft, paper thin skin as I hold her hand waiting for her to leave the pain forever.  I can love her as always, with the whole of my being; waves rushing over me of pure, intense love for my best friend.  I can feel everything but speech requires concision, so all I can really say to you which sums up the thoughts tumbling around my mind is 'I want my mum'.

Mum died nearly 20 years ago and today, thanks to charities like Ovacome, there is a much greater awareness of the symptoms leading to earlier detection and the chance of a better outcome.  

What are the symptoms of ovarian cancer?


Ovarian cancer is known as the Silent Killer because by the time the symptoms are observed, it has often spread to other organs.  Ovacome is a charity that has been supporting women in the UK with ovarian cancer since 1996.  Their website outlines the three most common symptoms:

  • Bloating that is persistent and does not come and go
  • Difficulty eating and feeling full more quickly
  • Abdominal or pelvic pain that is experienced most days
Urinary symptoms, changes in bowel habit, extreme fatigue or back pain may also be experienced. It is most likely that these symptoms are not ovarian cancer, but they could still indicate the disease. Vaginal bleeding should always be investigated. 

Ovacome will be one of the 40 charities that I will be fundraising for as part of my fortycubed challenge.  If you would like to make a donation you can follow this link or sign up to follow this blog to keep up to date on planned fundraising events and activities. 







Friday, 3 February 2017

Overwhelmed...

 

(in a good way)


I knew I'd need the support of family and friends in this challenge but they have been amazing.  They've offered their time, their expertise, their money and most importantly, their encouragement. One couple have even offered to raise £1,000 of my total target for a particular charity close to their hearts.

So I am still 39 for another 8 months but we have already raised over £1500 for charity. Thank you for all your support.

The Official Launch

 


Fortycubed is officially launched later this year on Saturday 14th October with a Charity Dinner at the De Vere Wokefield Estate.  As you might expect, all 40 charities I have chosen to support as part of my 40th birthday challenge will benefit from ticket sales to the event.  Each charity will also benefit from proceeds from an auction prize to be sold during the evening.

There will be a 'champion' for each charity at the event, most likely one of my friends who has directly benefited from the support of that charity and who wants to make sure the same support is available to others in the future.

This event will kick off a full calendar of events concluding in October 2018 with a charity fashion show and shopping evening.  In between, we are planning singalong film nights, massage marathons, photography courses, coffee and cake mornings, a foreign coin drive, golf days, book sales, a silent auction, an inflatable fun day and some other surprises.

Keep in touch!

 

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Thank you! ❤️