Tag Archives: Never Too Young

A New Year Beckons

31 Dec

Image result for New beginnings

New Years Eve for me is somehow full of both a touch of sorrow at the reminder of how quickly time passes and full of hope for the fresh beginning the New Year offers.  It’s also a time of reflection and when I look back at 2017, it’s not the endless meetings I’ve attended, places I’ve visited, awards I’ve won or reports I’ve read, but people that come to mind  and some extraordinary acts of generosity and inspirational selflessness.

Jennifer WarrenPeople like Jennifer Warren who died on the 6th December aged just 34.  Her brother contacted me after her death to let me know that ‘She left express instructions that she was happy for Bowel Cancer UK to use her story for the purpose of publicizing the charity’s aims and in particular for the purpose of raising awareness among the young.  She also requested that Bowel Cancer UK should derive some benefit from her funeral donations and hoped in particular that this might be able to be put towards campaigns related to the young, such as #Never2Young.’

Jennifer, like so many other young bowel cancer patients, experienced a delayed diagnosis and so when she was eventually diagnosed it was already at stage 4. She had only just got married and was looking forward to starting a family.

Her blog www.bodyassindex.com all too clearly documents the delight that was her and the awfulness that was her treatment.

Another woman aged 49, who wants to remain anonymous currently, contacted me in October to tell me that she hadn’t been given long to live and to apologise that she wouldn’t be able to help Bowel Cancer UK in the way she had wanted.  She had planned to become an awareness volunteer and to share her story to help ensure others do not have to endure all she is.   Instead she pledged a £5,000 legacy to the charity on her death, which she had been informed would be in early 2018, to make up for her lack of volunteering support.

33 year old father of three, Sam Gould’s reaction to his stage 4 diagnosis in April was to make a film to help raise awareness of the disease.  In those short final months of his life, Sam could not do enough to support Bowel Cancer UK using all his campaigning skill and zeal to publicise and raise funds for our Never Too Young campaign.  His family and friends continue to support us which means so much to us all.  Sam Gould

It is these three remarkable people, and many others, I think about when I reflect on 2017.  Their ability to consider and care about other people at the darkest moments of their own lives is I think inspirational and extraordinarily moving.

Of course New Year’s Eve also makes you look forward to new beginnings and this one feels particularly significant for me.  On 01.01.2018 Bowel Cancer UK and Beating Bowel Cancer will be formally merged as one charity and I’m excited for the possibility that creates.

Both charities achieve a great deal separately but we firmly believe that together we can achieve more.  Together we are determined to save lives, improve the quality of life and provide support to everyone affected by bowel cancer.   We will achieve this through an ambitious programme of research, support services, education and campaigns.

I know 2018 will bring its fair share of challenges and frustrations for our new charity but with another 41,000 people currently unaware that 2018 will be defined for them by a bowel cancer diagnosis, the stakes are high.

For them and for all those who have placed their trust and belief in us, we will not fail.  Of course we can’t #STOPbowelcancer alone – we need people to be actively with us – could you make that your unbreakable New Year’s resolution?  Mine is clear, I am going to give this my all.   I’m going to breathe through the frustrations, calmly problem solve my way through the challenges and keep my sights strategically fixed on improving outcomes, so that one day we can look forward to a day when no one dies of bowel cancer.   I’m ready 2018.

Happy New Year, may it be full of hope, health and happiness.

The Star of Hope

 

For more information about bowel cancer visit www.bowelcanceruk.org.uk or www.beatingbowelcancer.org

To speak to a nurse call: 020 8973 0011

Or visit our Online Forum

 

 

 

It’s all about people

23 Jul
The 02 Arena

The O2 Arena

I’ve definitely lost the plot this time.  I’m climbing up onto the roof of the 02 arena today.  I mean really – I’m 46 years old and didn’t dream of doing this kind of stuff even when I was 26.  I’m not sure what worries me most – the fact that I get horrifically dizzy looking up (weird) or the dreaded boiler suit (wish I’d started my diet earlier – I know outrageous vanity!).

But how could I not take part, when awesome charity supporter Clare Madden is taking on this challenge to raise funds and awareness because her Mum was recently diagnosed with advanced bowel cancer and our lovely patron Michael Pattemore is also prepared to take on the challenge in memory of his wife, Lynda Bellingham.  Bless them both.

It’s almost exactly six years ago that I became CEO of Bowel Cancer UK and I’m as passionate and committed now to saving lives from bowel cancer as I was then.  It’s been a tumultuous six years – full of amazing highs and some rotten lows but I feel so proud of my colleagues at Bowel Cancer UK because as a team we are doing some brilliant work and we know we are making positive change happen.  But I’m not happy yet.  I want us to do more – I want us to Stop bowel cancer for good.

I started taking on fundraising challenges of my own for two reasons:

  1. I am genuinely moved and humbled by the things people, who are often closely affected by bowel cancer, do to support Bowel Cancer UK and so I feel I must also push myself, go out of my comfort zone and in solidarity join them in raising funds so the charity can have even more impact. So over the next few months I am taking on 3 challenges, climbing the 02 Dome today, a 20k London Bridges Walk in September and another trek from the 26th September – apparently tougher than the Great Wall challenge – this time in Brazil.
  1. Because I am tired of feeling impotent and unable to do enough to stop people dying of this treatable disease. After all since I joined Bowel Cancer UK, seven years ago, around 112,000 people have died because of bowel cancer.  It’s so large a number it’s not quite imaginable but we must…

charlotte kitleyRosi pictueKatie Scarbroughlaura 61512391_10152214610928377_175815830_nMelanieChrisKate-GrossTony Levy

…Because it is all about people including all these dear friends who we have so tragically lost.

Whilst we know that bowel cancer can be cured and early diagnosis is the key, what it more difficult is detecting people early.  Symptoms can be vague, the current screening test too blunt (which is why we must move to Faecal Immunochemical Testing in all 4 UK nations ASAP) and patient and clinical delays lead to poorer outcomes.

We also don’t know enough about who is most at risk – we know about some broad groups – people with known genetic conditions such as HNPCC or Lynch Syndrome or Familial adenomatous polyposis, people with a strong family history or who have had an inflammatory bowel disease (IBD) for over ten years but we don’t know exactly who amongst those groups will develop bowel cancer.

Many people at high risk present young hence why we’ve been talking about them a lot as part of our Never Too Young campaign but it cross cuts age.  If we could get better at identifying people with increased familial risk for example or who with an IBD might develop bowel cancer then we could ensure they are effectively screened so it is prevented or diagnosed early.  It’s research linked to solving big issues like these, that I am fundraising for.  We hope to launch our first grants round in 2016 themed around issues related to Never Too Young. solidarity

However, we need to raise funds to make this happen, so I’m fundraising again.  It would be simply awesome if you could sponsor me or take on a challenge yourself, or hold a coffee morning or just ask your friends to donate.  If we join together and take action, I genuinely believe, in time, we will Stop Bowel Cancer.

And for that hope, today, I will happily don the dreaded boiler suit and harnesses and conquer that dome!

To donate please go to: www.justgiving.com/deborahalsina4 or Text STOP68 £5 / £10 to 70070

stop bowel cancer banner

Welcome to China

10 Oct Beijing Airport

Beijing AirportSo 25 hours after closing my front door I finally arrived in Beijing this evening. Hurrah!

After a severe attack of ‘butterflies’, I met the group of 27 people (including 2 trek leaders and trek doctor) at Heathrow and felt instantly better. A few people are travelling together but there are quite a few of us travelling on our own which is somehow nice. I’m grateful that everyone is friendly and there’s plenty of laughter already.

The majority of the group are doing the trek for charity and of course there are some moving backstories for why people are here. Already by chance, I’ve met someone whose mother died of advanced bowel cancer just six weeks ago and another person whose Grandmother died from bowel disease. It’s a timely reminder of how common bowel cancer and bowel disease is – there are few situations when I meet a new group of people, when I don’t hear such stories.

I was desperately saddened to learn of the passing of Sian Briggs yesterday. My thoughts are very much with her husband and daughters. A member of our bowel cancer Twitter community whom I’ve enjoyed meeting several times, Sian was a passionate advocate of our Never Too Young campaign having been diagnosed with bowel cancer in her forties. I can’t help but think that Sian could and should have been saved.

So tomorrow, after a two hour drive from Beijing we will take our first steps on that famous wall. I so hope that by taking action I can raise funds and awareness for Bowel Cancer UK’s Time for Guts campaign. People like Sian are dying needlessly and it is time it stopped. Bowel cancer is, after all, preventable, treatable and curable.

Please sponsor me and help me raise awareness.

www.justgiving.com/deborahalsina1

Richard Branson and kissing frogs

2 Oct

Image

“Hello, I’ve have had some very bad news. On Monday I was told by my consultant that not only has the cancer returned its spread to my pelvis and there isn’t a lot more they can do for me, therefore I am now terminal” Michael, 54, bowel cancer patient

“I had a meeting and scan on Friday.  Not good news major spread in the liver and other places. We agreed no more chemo.  It looks like it’s taking hold now” Tony, 50, bowel cancer patient

I really hate bowel cancer.  During my first few days back at work after my long summer break I caught up with my patient friends. Three recurrences, one told now inoperable, one with just a week or two left, three with spread, several with severe reactions to chemo.  Desperation, despair, occasionally acceptance. Bugger.

What makes this harder is that really bowel cancer should be a good news story. It is one of the most treatable forms of cancer.  If it is diagnosed at its earliest stage you have a 93% chance of surviving.  However that can be difficult to achieve for a host of reasons including:

  • low levels of awareness leading to patient delays in seeking advice;
  • GP delays in referring for diagnostic tests because it can be difficult to identify who to refer;
  • low take up of screening and the need for a more sensitive (and easier) screening test:
  • poor surveillance programmes for those at highest risk.

At Bowel Cancer UK we are working flat out to address some of those issues – we run awareness programmes, we train public health and health care professionals, we promote screening, we campaign where we see issues that should be addressed, we provide information and support to people affected by the disease. At the same time we are carefully monitoring and evaluating what we do so we can do it better and share our learning with others. Yet we are still hampered by our lack of scale.

Sir Richard Branson

The need to grow the charity has led to my developing a mild obsession with transformation, change and money!  I’ve started to study the habits of wealthy entrepreuneurs and successful businesses to try and figure out how they made the breakthrough that led them to success, money, influence. I’ve felt vaguely re-assured by the hard graft so many describe prior to take off but I can’t help but wonder what Richard Branson would do if he were CEO of Bowel Cancer UK?

Don’t get me wrong, it is a pretty healthy obsession because all I want is to enable Bowel Cancer UK to do more, for more people. Yet after 22 years working in the voluntary sector I’ve come to realise that money is the charity workers curse.    We don’t have gadgets and gizmos to sell (usually), we only have our issue.   I’m selling an opportunity to be part of saving lives.  Sometimes I’m gobsmacked that it’s such a tough pitch, that so few seem to want to buy into it.

Bowel disease study day

It’s particularly frustrating when we know that there is a real need for what we do – the patients and their families I speak to every day are a constant reminder of that.  I also know that our work makes a tangible difference. For example the independent evaluation of our recent pilot GP study disease days in Birmingham and Manchester commissioned by Cancer Research UK showed that 92% of the GPs attending intend to make positive changes to their clinical practice as a result.  That’s good news as we wanted to support GPs and provide them with the opportunity to consider their practice and to make changes where needed.  Yet we struggle to find the funds to run them.

In our joint Train the Trainer programme with Breast Cancer Care we trained around 100 health care professionals in areas with high incidence and mortality of the disease and the evaluation was fantastic.  It showed that trainees knowledge about and confidence to share information /raise awareness was dramatically increased and as a result they went on to reach over 10,000 people and that number continues to grow.  Clearly this is positive yet the fundraising process to get the necessary funds to run them is long and arduous and there is no guarantee of success.

Never Too Young banner

We are having influence too.  We have worked hard to ensure there is depth and substance behind our Never Too Young policy recommendations and are fortunate to have the support of leading academics and clinicians.  Yet to turn those recommendations into practice requires money to fund the necessary research.  Bids of course have been duly written and submitted and now the agonising wait begins. What a waste of time.   After all, people are dying and this might help change that.

Most days (and too many nights!) I wrack my brain to try and work out what we need to do differently and I am always on the look-out for ideas and open to advice and guidance.  Of course it’s in the wee hours of the night, the self-doubt and self criticism bites and there are times when I long to run away and work in a Cotswold tea room.  When I dream of clarity and simple transactions… you want coffee…here it is.

Yet I just need to think about patients and their families and the impact of losing someone you love and my own feebleness melts away.

My friend Neil, who lost his wife Lindsey to bowel cancer, described it to me so movingly.

‘The whole journey of losing a partner and best friend is very odd. At first the shock protects you a little.

Then you throw yourself into work with unbelievable mania just to avoid thinking about it.

Only now 10 months on has reality kicked in. The loneliness is awful, the sense of there being no purpose to anything any more is high

I am sure this is all part of the process but it is such a painful part

But I am ok – really I am’

I feel such anger that people are going through this and I am bored rigid by steady incremental growth. We need step change.

What makes it feel more urgent is that in my re-networking of the new NHS in England it appears that many politicians and key decision makers in the new organisations have moved on or at least distanced themselves from cancer, as their budgets have shrunk and their portfolios expanded except for where there are big headlines.  Yet many of the changes required are not news grabbers.  For example, increasing endoscopy capacity isn’t really media sexy but it might enable us to detect people quicker when treatment is more successful, yet who is prioritizing that?   Well we are.

Today around 43 people died of bowel cancer and tomorrow another 43 will die and the reality is that many of those deaths could have been prevented.  That’s why money and transformation is so important – to ensure we can dig deep and find meaningful sustainable solutions.  This is definitely not the moment to move on and give up.

Oh dear, I guess the tea room will have to wait and I will just have to keep hunting for that breakthrough moment and ‘kissing frogs’  just in case one turns into a generous benefactor.

I also better finally settle on a new fundraising challenge – it isn’t the solution, but right now every penny helps.

Star of hope

“Never doubt that a small group of thoughtful, concerned citizens can change the world.  Indeed it is the only thing that ever has”

Margaret Mead

If you would like to donate to Bowel Cancer UK you can do so online via our website  www.bowelcanceruk.org.uk or visit my Never Too Young  JustGiving page: www.justgiving.com/deborah-alsina

If you are experiencing any symptoms of bowel cancer, please tell your GP or call our nurse run information and support line in confidence on freephone: 0800 8 403530 or email support@bowelcanceruk.org.uk

Bowel Cancer UK aims to save lives and improve the quality of life of anyone affected y bowel cancer

Bowel Cancer UK aims to save lives and improve the quality of life of anyone affected y bowel cancer

Victim or Survivor?

13 May
struggling image

Struggling…

To have striven, to have made the effort, to have been true to certain ideals – this alone is worth the struggle’

William Osler

 

I’ve been struggling recently.  Struggling with loss, struggling with frustration and a sense of impotence and struggling with anger.   Wonderful, beautiful Katie Scarbrough, who I wrote about a couple of posts ago, died at just 32, leaving two young children aged 4 and 8.   I never met Katie but we spoke, emailed and tweeted and her determination to raise awareness in such difficult circumstances moved me.  I’ve seen it before and if I’m honest I don’t really want to see it again.  I don’t want people to have to turn such deep desperation into positive action.  I want them to laugh freely and be happy.  I want them to live.

Katie looking fabulous in her purple wig with husband Stuart

Katie looking fabulous in her purple wig with husband Stuart

Hearing the terrible news about Katie has also made me reflect on my own reaction to difficult news.  I remember all too vividly when my husband was diagnosed with leukaemia and my father’s diagnosis and death from bowel cancer and how damn cruel and unfair it can feel.  It’s amazing how the ‘why’ questions take over – why me, why us, why now?   Until you find your way forward. That process taught me that you have to make a choice about whether you are a victim or a survivor.

I think what impressed me about Katie – and reminded me of another patient we lost, Rosi Kirker Miller, who I wrote about in my first post – is that even though the disease eventually took them away physically, it didn’t beat them, their spirit remained intact.  They were survivors.   They made sure that out of something dreadful, good will happen.  I admire that tremendously.

Never Too Young bowel cancer patients

Never Too Young bowel cancer patients

So that’s what we are trying to do at Bowel Cancer UK with our Never Too Young campaign.  We are trying to take something really difficult and turn it into something positive.  We embarked on the campaign because we were hearing too many stories like Katie’s.  We thought long and hard about the campaign because we didn’t want to do something trivial – yes the stories will inevitably get media attention – but that’s just not enough.  There has to be substance.  People are struggling and dying so we need to make change happen.

We worked hard to get our recommendations right – we’ve consulted patients and their families and we’ve consulted some of the UK’s leading academic and clinical experts about what could make a real sustainable difference and I think we are on the right track.  You can read more in our campaign briefing.

In short there are two particularly important sets of issues which we believe need addressing:

1. Why are more younger patients developing bowel cancer and is there anything different about bowel cancer in this young age group.  Do they present differently? Are there any genetic links? What is the trigger?  So we are recommending that a registry of younger bowel cancer patients is set up so we can study the epidemiology of cancer in this group.  We also want all younger patients and their families routinely genetically tested.

2.  How can we identify these younger patients more quickly?  So many people have bowel symptoms, but few (thankfully) will have bowel cancer – so who should we be referring for diagnostic tests and what is the right diagnostic test?  That’s why we are recommending that a new risk assessment tool on bowel disease (but including bowel cancer) is developed for use in primary care to help GPs identify which patients to refer and clear guidance developed on which diagnostic test should be used.    We MUST also ensure that screening for high risk groups, for example for those with an inflammatory bowel disease or genetic condition is in place as bowel cancer in this group often presents earlier.

If we can get our recommendations implemented I genuinely believe that we can make a significant difference to younger bowel cancer patients.

You can really help us too by signing our petition asking David Cameron to meet us to discuss this and to take action.  We’ve targeted the Prime Minister directly because this must be an issue for the UK as a whole to address. We cannot simply look at these issues separately in England, Scotland, Wales and Northern Ireland, even though in policy terms, health is a devolved issue.   People are dying or being diagnosed late when treatment is more gruelling but together WE CAN change this.

Katie was a wonderful ambassador for the Never Too Young campaign through her blog, her tweets, her extensive media interviews and when we created the petition I thought about her.  I wanted her to know that we would continue her campaign after she was gone and that her fighting spirit and eloquent articulation of her experiences – often terrible despair at leaving her children – will continue to drive us forward.  We couldn’t save Katie – she was diagnosed too late – but I think at the very least, she would want us to learn from her passing and to work hard to stop it happening again.

So in Katie’s memory, please take action.  Sign our petition now.

Katie Scarborough – Rest in Peace, you will not be forgotten.

 Katie FB1

‘She is Gone’ by David Harkins

You can shed tears that she is gone

Or you can smile because she has lived

You can close your eyes and pray that she will come back

Or you can open your eyes and see all that she has left

Your heart can be empty because you can’t see her

Or you can be full of the love that you shared

You can turn your back on tomorrow and live yesterday

Or you can be happy for tomorrow because of yesterday

You can remember her and only that she is gone

Or you can cherish her memory and let it live on

You can cry and close your mind, be empty and turn your back

Or you can do what she would want: smile, open your eyes, love and go on.

If you would like to donate to our Never Too Young fundraising appeal and help us raise funds to continue this campaign and improve services for younger bowel cancer patients, please visit my JustGiving page: http://www.justgiving.com/deborah-alsina

For more information on Bowel Cancer UK, please visit our website: www.bowelcanceruk.org.uk

If you are experiencing any symptoms of bowel cancer, please tell your GP or call our nurse run information and support line in confidence on freephone: 0800 8 403530 or email support@bowelcanceruk.org.uk

Bowel Cancer UK aims to save lives and improve the quality of life of anyone affected y bowel cancer

Bowel Cancer UK aims to save lives and improve the quality of life of anyone affected by bowel cancer

Gravity, fear and friendship

22 Apr

in the air‘I want to fly like an eagle
To the sea
Fly like an eagle
Let my spirit carry me
I want to fly like an eagle
Till I’m free
Oh, Lord, through the revolution’
Steve Miller, Fly Like an Eagle

in the air 2in air 3 

with canopy IMG_2937     coming in to landlandingOMG .. we really did it!  Niki and I threw ourselves out of a plane and found friendship. I am counting my blessings that Niki stepped up to my twitter cry for help and offered to skydive with me. With the benefit of hindsight I don’t know how I’d have managed without her.

Niki and Dave

Niki and Dave

What can I tell you about Niki? Well clearly she’s amazing.  One of the warmest, bubbliest and most lovely people I’ve ever met.  She has done a series of fundraising challenges, including running the Edinburgh marathon and trekking the Great Wall of China to raise money for Bowel Cancer UK.  She started this after her friend James died of bowel cancer aged 28.  Her remarkable support is a moving reminder that cancer affects more than just the patient.  Having met on twitter (you can find her @nikinom) a year earlier, I felt instantly blessed to have her and her boyfriend Dave with me along with my husband and daughter. What made it easy was that she understood and shared my motivation to take action.  We also shared misgivings about what we were embarking upon.

The whole skydiving experience was incredibly emotional right from the outset.  It was a perfect beautiful sunny day but I was reduced to tears by messages of support from patients and those who have lost loved ones and whose grief is still so raw.  My dear friend Lesley’s comment (Laura’s mum) on this blog quite frankly finished me off but it also made me even more determined.

We can do this!

We CAN do this!

Niki and I met at the airfield which was in a beautiful countryside location just outside Swindon.  We signed all the relevant disclaimer forms and then waited until we were called for training!   The training was brief but we chuckled our way through it, lying on your tummy in a field practising free fall positions is a bit random after all.

Practising my free fall position with Matt

Practising my free fall position with Matt

Niki looking glam!

Niki looking glam!

We laughed as we struggled into our ‘boiler’ suits and at our deeply unflattering hats and eventually just held hands as we climbed to 10,000 feet in a plane that felt too small to be in the air.

Quite frankly everything felt wrong… being in a plane with 5 blokes (the pilot, two tandem partners and two cameramen) telling unrepeatable jokes full of sexual innuendo whilst strapped to one of them and eventually sitting on their knee, with another resting in-between our knees was certainly ‘cosy’.  Add that we were preparing to jump out of a perfectly (well reasonably) good plane as well, then it definitely felt counter-intuitive to all we had learnt about safety during our lifetimes!   Yet my tandem partners repeated checking of my harness and calm words about what was going to happen next were oh so welcome.  As we climbed higher and higher so did the butterflies in my stomach…  Deep breath, tightly hold Niki’s hand and put on presentation face… I can do this, I CAN do this….

Niki jumped first – seeing her terror and hearing her fearful cry of ‘this is so scary’ as she dangled on the edge of the plane in free fall position and then a scream as she fell (was pushed) was mortifying and then it was my turn…. We jumped from 10,000 feet, that’s two miles up – yikes!  You free fall for the first 5,000 feet at 120 miles an hour.  The first few seconds of the free fall were quite frankly horrific to a non-adrenalin junkie wimp like me. The speed and spinning until the instructor gets it all under control was way way outside of my comfort zone.  Actually, for a few seconds I literally felt total panic, but then gave myself a stern talking to and determinedly opened my eyes and controlled my fear.  After all, people had kept telling me, I was going to love it – the least I could do was try.  But most importantly I was doing this for a reason.  I didn’t want to let everyone cheering me on across the twitter waves and my colleagues down.

I suddenly remembered the cameraman and tried to look at the views and smile as if this was what I did all the time. Trust me, it’s tough to smile at those speeds with your cheeks flapping attractively! Then, suddenly, a big jolt and the parachute is open pulling you upwards… unexpected serious feelings of nausea ensued but I controlled it and realised how wonderful it felt that we had slowed so much.  Finally it felt under control. The quiet under the parachute canopy is amazing after the loud noise of the wind at 120 miles per hour and the views were clear and spectacular over beautiful countryside.  If I hadn’t felt nauseous at every turn it would probably even have been enjoyable… It was most certainly awesome.

Never Too Young bowel cancer patients

Never Too Young bowel cancer patients

As we ‘floated’ down from 5,000 feet I talked to my instructor about why I was doing it. I told him about Laura and Lesley all the other young patients and their families I know and care about. I told him that even though this absolutely wasn’t my thing I was proud to be facing my fears and doing something.  That I hoped by taking action and raising funds I could make a difference.  I told him how the stories of loss and grief hurt and how moved and humbled I felt by all the support I’d received.  So many people I care about were on that jump with me.   Poor bloke – he was probably expecting small talk about the view and I’m telling him about death, late diagnosis, grief and why it has to stop.  It’s silly but it makes me well up just thinking about it because as I looked out over the beautiful countryside repressing my fear, I wasn’t alone.

Landing is remarkably controlled but I still felt alarmed as the ground got closer and closer and I couldn’t get my legs up – my face in the pics is comical, my anxiety clear for all to see!

Yah! I did it.

Yah! I did it.

Even though I jumped second we were down first and then I had to wait for Niki.  Bless her she was white as a sheet and I felt terrible guilt having persuaded her to sign up.

Relief...

Relief…

I think it’s fair to say we both felt rather emotional, shell shocked and in disbelief about what we had just done.

Did we really just do that?

Did we really just do that?

As we watched someone else land we realised we’d just done something pretty darn amazing… entirely foolish but amazing…

I so want to tell you I loved every minute of skydiving – I feel a bit of a failure that I didn’t. It was genuinely an amazing experience which will always stay with me, but I can’t claim to have ‘enjoyed’ it in a traditional sense of enjoyment.  However as well as the wonderful donations for Bowel Cancer UK, I have gained a lot.  I have a lovely new friend in Niki and a deep sense of pride that together we faced our fears, held our nerves and took action for younger bowel cancer patients.

Neither Niki nor I longed to go up and do it again straight away as we were told we might, yet I would absolutely do it again in a heartbeat if it would make a real difference and help save lives.

Niki & Deborah

PS

Thank you to everyone who has sponsored me… If you haven’t don’t worry you still can!  Justgiving.com/Deborah-Alsina

If you are  new to my blog and would like to find out why I’m taking action by fundraising for younger bowel cancer patients, do visit Bowel Cancer UK’s Never Too Young campaign website pages or simply read the posts in my blog archives.

Finding Hope….

9 Apr

sping flowers“Hope is the thing with feathers 
That perches in the soul
And sings the tune without the words
And never stops at all.”

Emily Dickinson

laura 6

I cried this week – tears of sorrow and anger.  Beautiful Laura passed away. She was taken from her family and friends far too young, a month after her wedding day. It was a day I’d been dreading for some time.   It’s simply not right and it makes me angry because her untimely death could and SHOULD have been prevented.  Bowel cancer is after all really a good news story… it is preventable, treatable and curable.  This blog is dedicated to her.

Star of hopeWelcoming Ben Richards…

ben_richards

I hope Laura would have been pleased to hear that 40 year old actor Ben Richards became a patron of Bowel Cancer UK this last week. He is living proof that you can survive bowel cancer.    I was particularly delighted because I’m rather tired, if I’m honest, of simply hearing how embarrassing bowel cancer is.  I can’t help but wonder if by endlessly repeating that, if it doesn’t make it become so.  I know it’s hard for us British/English/Welsh/Scots/Irish* (*delete as appropriate or add your own!) lot to talk about the symptoms.  After all blood in your poo, a change of bowel habit, pain in your tummy aren’t everyone’s hot topic of conversation but my goodness surely it’s far worse to die by not doing so.

Star of hopeLove your bowel

love your gut

I’ve a long-held belief that we need to move the debate about bowel cancer on – we need to take a fresh look at the way we image and talk about the disease in order to find a way to mainstream it.  The word bowel is one of the barriers as people don’t really understand where or what it is compared to say the heart and lungs and think it’s all a bit unpleasant.  I believe we need to change this and educate people about what their bowel is and why it is so vital for our digestive health.

One thing I’m certain about is that many of those without some part, or all, of that question mark shaped internal organ, would testify that life is easier with it than without it.

Star of hope  Giving hope 

I find it terribly frustrating that some cancers are considered ‘sexier’ than others.  If you are a celebrity that has had a ‘sexy’ cancer it seems absolutely acceptable to share your story and even those with no connection to the disease are happy to be associated with it.  Celebrity support certainly gets media attention and that can be positive.  So why should it be any different for bowel cancer?  After all, no cancer is sexy and every cancer patient is as important as another.  I firmly believe that bowel cancer patients deserve the same support as others.  So come on all you ‘celebs’ out there… we need you to stop perpetuating the myth that this cancer is ‘embarrassing’ and talk about it instead.  Please step up, share your stories, show your support, raise awareness – give hope.  You can make a difference.

I can’t help but wonder if Laura had read such a story in a magazine or found it on the internet – maybe, just maybe, she would have known how important those symptoms she was experiencing were and insisted she was checked properly.  Maybe that would have meant her family wouldn’t have been burying her tomorrow and that they wouldn’t have been left absolutely shattered, empty and heartbroken by her loss.

Star of hopeA bright future

Laura’s passing rocked many of my patient friends on Twitter – particularly those with advanced disease – it seemed to give wings to those awful fears lurking beneath the surface and to at least temporarily take away their confidence and hope.  So I want to finish this by sharing one story that should give hope.

Hayley and AutumnHayley was diagnosed at 32 after her baby girl Autumn, was born prematurely at 27 weeks and sadly passed away a few short weeks later because Hayley’s bowel tumour had stopped her growing.  Hayley blogs  incredibly movingly about how Autumn saved her life, as this led to her diagnosis of stage 3 bowel cancer.  Via the wonders of social media, I walked alongside Hayley throughout her treatment and helplessly watched her struggle with chemo and regular emergency visits back to the hospital with infections and high temperatures.  After all that, she also had to deal with radiotherapy too.  It was tough, physically and emotionally and on top of everything else she was grieving for her baby.  Wonderfully, she is now cancer free and her blog describes the future she sees ahead of her.

‘Until recently, I couldn’t see past the treatment – now all I can see is holidays away with Paul, having fun with family and friends and having our family we have always wished for. I can’t think of a better way to celebrate our daughter’s gift to me than having a little brother or sister (or both) to whom we can share our wonderful story of their big sister, Autumn.’

Hayley has a bright future ahead of her but it is very different from the one she expected.  She shared her story for Bowel Cancer UK’s Never Too Young campaign. You can watch it here.

Star of hopeTake action

We launched our Never Too Young campaign because of younger bowel cancer patient’s experiences and to seek positive solutions so that younger patients could be identified and diagnosed more quickly.  I want to be part of stopping this senseless loss of life, I want there to be real reasons for hope.  I’m fundraising because this all costs money and the charity doesn’t have enough.

My tandem Skydive was delayed due to the snow (just a brief reprieve!) but it is looming again, re-scheduled for the 20th April.  When I’m doing it and conquering my very real fear, I am going to think about Laura and remember that she should have enjoyed her future too,  surrounded by her loving family and friends.

Please sponsor me and take action to make positive change by joining Bowel Cancer UK’s  Never Too Young campaign.

 

RIP Laura

Do not stand at my grave and weep

Do not stand at my grave and weep;

I am not there. I do not sleep.

I am a thousand winds that blow.

I am the diamond glints on snow.

I am the sunlight on ripened grain.

I am the gentle autumn rain.

 

When you awaken in the morning’s hush,

I am the swift uplifting rush

Of quiet birds in circled flight.

I am the soft stars that shine at night.

Do not stand at my grave and cry:

I am not there. I did not die.

Mary Frye

To sponsor me please go to  www.justgiving.com/deborah-alsina

For Bowel Cancer information please visit www.bowelcanceruk.org.uk

To find out more about the bowel please follow this link to our interactive diagram

To find out how you can ‘love your bowel’ please click here.

If you have concerns or questions about any aspect of Bowel Cancer, please contact our specialist nurses on Freephone 080 8 40 35 40 or email them on support@bowelcanceruk.org.uk

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