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

Today’s the day!

9 Oct

Finally after months of prevaricating, anxiety and excitement it’s here.  I’ve walked my last Cotswolds walk and today I’m going to China to trek on the Great Wall.   I think I’m ready…

bags

Walking boots – check

Trekking gear & waterproofs – check

Sugary snacks – check

Paracetamol, ibuprofen, imodium – check

I’ve fitted everything I could into my 60 litre holdall and if I’ve forgotten something, tough –  I will just have to manage.  More likely, knowing me, I’ve fitted in too much and the holdall should have been smaller!

It’s not been particularly easy getting to this point – sometimes it’s been a negative tipping point on my stress levels  as I’ve struggled to fit in enough training with my long working/commuting days (often 7am – 9pm) and being a Mum, but the good news is I’m definitely fitter than I was.  Walking with my dog in the stunning Cotswolds countryside has undoubtedly been a tiring delight.  The beauty of it all has made my heart sing, yet at the same time I’ve not lost sight of why I’m doing this.

I’ve had a lot of time to think about all those affected by advanced bowel cancer and I’ve  grieved for those we’ve lost during this time and those we are losing – there’s been a lot of bad news of late in my circle of patient friends.  Ultimately my sorrow for them and their families has served to strengthen my resolve.

I’ve also had time to think about/mull over some of the big challenges about advanced bowel cancer and to look for solutions.  Greater awareness amongst the public and primary care professionals and increased uptake of screening is clearly critical, as is better surveillance screening of high risk groups so we detect cancers earlier.   However, we must also address variations in treatment and care around the UK.  Better advanced multi-disciplinary team working and access to high quality liver surgery are just two examples of things we could improve relatively easily.  And that’s why I’m going to China – people are dying every day and others are being denied access to a possible cure and I think it’s time that stopped.  I hope this trek can help raise awareness and funds so Bowel Cancer UK can lead the change needed to improve treatment and care of people with advanced bowel cancer.

Today I’m meeting the tour leaders and 26 other people who are doing this Great Wall of China trek at Heathrow.  My flight leaves at 5pm and tomorrow I will arrive in Beijing at around 17.30 local time (7 hours ahead).  The next morning I will have a birthday with a difference as we catch our first glimpse of the Great Wall and take our first steep steps.  Wish me luck – I’m going to need it!

Please sponsor me if you can:  www.justgiving.com/deborahalsina1

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Why failure is not an option

18 Sep

‘The Grand Old Duke of York.  He had 10,000 men, he marched them up to the top of the hill and he marched them down again…’ Who’d have thought that I’d find anything in common with the Grand Old Duke.  Yet I’ve been thinking about him a lot as I’ve walked up and down and down and up my local Cotswold hills in preparation for China.

So the good news is that I feel more prepared than I was for my Great Wall of China trek, but the bad news is that I don’t feel anywhere near prepared enough and now it’s only three weeks away.

I have hit a deep low this last week or so and have feared that I’ve made a dreadful mistake signing up.   However much people keep telling me that I will be fine and that it will be awesome (it undoubtedly will), I’ve been really doubting my ability to take on those steps.  I mean walking up Borough tube stairs still hurts for goodness sake.  I think I would feel better physically and mentally if I could fit in more training but with a packed schedule at work, combined with my 5 hour commutes, I am finding it hard to fit it in.  On top of all of that, my left foot has started to swell up again so that hasn’t helped either!

oxfordshire wayMy darling husband has been a star, as ever, not moaning as I disappear for yet another long walk at weekends but I know that two of my three children are feeling my absence.  The youngest expresses it but the middle one just disappears with friends.  Perhaps it’s me that is missing him?  The eldest is fine thankfully – university is beckoning.    I don’t desperately want to leave my family right now.  But I am doing this for a reason: to raise awareness and to try and galvanize support for Bowel Cancer UK’s work to improve the treatment and care of people with advanced disease through our Time for Guts campaign and our interlinking Never too Young campaign.

The fundraising has been tough too – the same wonderful people support but I’ve tried reaching out to others who I know well, some of whom are financially very well placed to support and so far radio silence. Others who I thought I could rely upon for their support (moral as much as financial!) haven’t come through.  Of course, every hurdle is a challenge I will take on but if I’m honest it has felt really difficult.   It hasn’t helped that it has coincided with our annual planning and our annual frustration that there is so much more we would like to do as a charity but can’t do because of our lack of scale.

Charlotte KitleyI never need reminders about why what I/we are trying to do matters but I got them anyway, these last few weeks.  There seems to have been a lot of bad news amongst my circle of patient friends.  It’s included the terrible news about the passing of 36 year old Charlotte Kitley.  Charley and I never met but I read her blogs, chatted with her and was full of respect for her positivity and determination.   I highly recommend you read her blog “Palliative care shouldn’t mean the end of living”, it seems to sum her up really.

A couple of days ago, I sat in a park and sobbed as I read her final blog “and so there must come an end”.  It’s a tough read because as she says:

“I have so much life I still want to live, but know I won’t have that.  I want to be there for my friends as they move on with their lives, see my children grow up and become old and grumpy with Rich.  All these things are to be denied to me”

Yet it’s also full of sage advice and her trademark positivity.  She was generous, kind and determined.  Even just a few days before she died she was urging me to share her story if it would help save others.

No-one should have to write that beautiful moving goodbye because of bowel cancer.  It can be cured but early diagnosis makes that so much more possible.  Charley was diagnosed too late.

So to the radio interviewer who once asked me if bowel cancer got less support because it was less emotive, listen to the stories.  They will make your heart melt. No cancer is sexy and each cancer patient is a person first and foremost with a life, family, friends, hopes and dreams.  The site of their tumour should be immaterial to the support on offer to them.

My inner struggle made me go back to one of my favourite quotes from Barack Obama:

‘ Making your mark on the world is hard. If it were easy, everybody would do it. But it’s not. It takes patience, it takes commitment, and it comes with plenty of failure along the way. The real test is not whether you avoid this failure, because you won’t. It’s whether you let it harden or shame you into inaction, or whether you learn from it; whether you choose to persevere.’

Well clearly I’m no Barack Obama, yet the essence of his message can be applied to so many situations.  In remembering this, I have felt a little ashamed that I have allowed myself to wallow, to feel defeated, stupid, humiliated.  This is so not about me – it never has been, never will be – it’s always about others and a desire to make positive change.

I will push through the dark fog, I will succeed, I will take on this ridiculous trek and climb those steps, I WILL do this for Charley.

The Star of Hope: an international symbol for bowel cancer

Please sponsor me either through JustGiving:   www.justgiving.com/deborahalsina1

Or TEXT GUTS72 £* to 70070.  

(* you can donate any amount up to £10 via text.)

Facing your fears: #Ihaveguts

27 Aug
Great_Wall_Of_China 19

The Great Wall of China

 

“I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do.”

― Edward Everett Hale

 

 

 

It’s indelibly engrained in my memory of being 13 years old – Katie W running full pelt towards me, lacrosse stick poised to tackle. She was confident, focused and fierce and I didn’t feel any of those things, rather just rising fear and panic. I’m absolutely certain that my team mate only passed me the ball as a last resort. Of course, Katie tackled the ball away from me all too easily and charged forward and scored. Groans from my team, humiliation for me.

Of course the humiliation would have been easier to bear if I was only awful at lacrosse but no, I was dreadful at all sports. I had talent at missing rounders balls when I was batting, for serving double faults on a tennis court, for missing the netball goal pretty much every time and for being the most inflexible person ever in gymnastics. My saving grace was that I could swim well even if not particularly quickly – as my performance in my one and only swimming gala would prove – oh but with ‘such a lovely style’ (thank goodness for mothers!). My teenage years saw me use every possible trick in the book to avoid participating in any school sports whatsoever.

In fact I’ve avoided it and every other physical challenge (apart from some fell walking) ever since. I’ve cheered others on but have always claimed to myself at least, that I can’t because:
– I’ve a dodgy back and painful feet
– I get very dizzy looking up (weirdly)
– I commute far too much (5 hours a day, 4 days a week) and it wouldn’t be fair to take any more time away from my children to enable me to get fit…
– I will look totally stupid and am bound to fail anyway.

The inner dialogue is now so well-rehearsed that my doubting self has defeated me before I’ve even started.

As someone who tries to live life with a “can do” attitude taking positive action rather than being a bystander, this “can’t do”  attitude feels really out of character but it’s so deeply entrenched in my psyche that I have found it hard to overcome. Now, finally I’m going to change that.

wecandoit
I am determined to overcome my fear, step out of my comfort zone and take action to show my support for people affected by advanced bowel cancer as part of Bowel Cancer UK’s Time For Guts campaign. Because too many people are dying early and we want to change that. I know we can make an impact but first we need to find a way to fund the campaign and any new services we develop.

 

IHaveGuts

That’s why we are asking people to step outside their comfort zone and to be sponsored to do so. That doesn’t have to mean taking on the Marathon de Sables, an Everest expedition or even a tight rope walk on a high wire. Just something you need guts to do – whatever that is for you.

So I’m going to tackle my fear of physical challenges and go to China to trek on the Great Wall. It’s a couple of night flights and 7 days of trekking with 30 people I have not met before, who from the facebook group I’ve now joined all appear to be much younger and more organised than me. We will be staying in different places in rural China including some farmers houses – the fear of inadequate, or worse no, showers and loos is a leitmotif of the facebook group conversation!

Rafi and me!

Having delayed signing up, I’ve rather belatedly started to train in an attempt to get into shape and so accompanied by my dog Rafi, I am discovering hitherto unknown paths through the beautiful Cotswolds countryside as I try to build up my miles. The positive effect exercise and fresh air has on my mood and feeling of mental wellness has been duly noted.

I’ve even been cycling again, retrieved my step trainer from the garage and am walking every set of stairs I come across – yes I’ve even joined the ranks of the odd people who walk up London tube stairs! So far all this has proven to me is that I am miles and miles away from being fit enough to cope with what look like remarkably steep sections of the Great Wall. When I walk fells in the Lakes, once a year, I have my husband and sons to pull me up – I can take a break and admire the views rather regularly – but in China my support network has gone and I really can’t hold everyone up. Just the thought of it makes my stomach churn!

TimeForGuts
Yet failure is not an option. I’m doing this for a reason, people are dying needlessly, in fact during the seven days I am trekking around 310 people will die in the UK of bowel cancer. So I will carry my purpose mindfully with me through every steep step and hope that my determination to save lives will carry me through.

Please sponsor me if you can and ask your friends and family too!  I’ve paid all the costs myself, so everything I raise will go straight to the charity. www.justgiving.com/deborahalsina1.

Thank you in advance. 

 

 

 

Bowel Cancer UK is determined to save lives and improve the quality of life for all those affected by bowel cancer.  We achieve this by: 

  • Championing early diagnosis
  • Improving treatment and care
  • Enabling research to save lives

 

For more information on bowel cancer, please visit Bowel Cancer UK’s website:  www.bowelcanceruk.org.uk

 

 

 

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It’s Time for Guts

18 Aug

TimeForGuts

 

96,000 –  that’s the number of people who have died from bowel cancer since I started working at Bowel Cancer UK six years ago.

Every day on a micro level – amongst the people I know – I witness what that means.  The fear, pain, despair, loneliness, grief it can cause for the patient and their family.  charlotte kitley36 year old Charlotte Kitley’s blog ‘Life as a semi-colon‘ describes all this so movingly.  Here she describes her need for treatment options:

‘In November, we were told my old chemo routine was no longer working, so we would try a new combination of drugs.  In February, we realised these new drugs weren’t working either, and in fact were making me feel worse.  We started my final regime of life-prolonging drugs, which have kept the cancer at bay until the summer.  We now have to accept I have run out of conventional medical options and will be looking to the trials people at the hospital in the hope I qualify for something, anything!’ 

Charley has young children – a family, a life to lead.  This is simply wrong.   It makes me angry and very determined.

It makes me angry because bowel cancer should be a good news story.  Mortality rates have fallen dramatically over the last 20 years – according to Cancer Research UK by over 30%.  How fantastic is that, yet still, 16,000 people continue to die each year of bowel cancer.  I also feel so frustrated because change takes too long.

Yet on the flip side, it strengthens my determination to understand what is going wrong and how we can make positive change so lives can be saved.

As a result, last week, we launched our new campaign around advanced disease called ‘Time for Guts’  because we think it is time there was a  new fresh look at the treatment and care available for patients of all ages.  It will overlap with and compliment our ongoing campaigns, about access to diagnostics, ‘Right Test Right Time’ and about the diagnosis, treatment and care of younger bowel cancer patients called ‘Never Too Young’.

Around 3,800 people are detected with advanced, stage 4, bowel cancer, plus around half of the 9,800 people diagnosed with stage 3 cancer will go on to develop stage 4 and a large proportion of the c. 14,000 un-staged cancers are also likely to have been stage 4.

Advanced bowel cancer is tough in every way.  That first look at your own mortality is hard and then the sinking realisation of what lies ahead.  Extensive surgery or – perhaps worse – none, chemotherapy, possibly radiotherapy depending on tumour site and a terrible sense the odds are stacked against you. Cruelly they can be.

The reality is that in the UK, there are variations in treatment and care leading to people dying needlessly or more quickly.   When it comes to advanced disease, there has been a lot of focus on access to drugs  – and let’s face it, there are some big issues about that – yet the reality is what’s the point of having a drug to shrink your liver tumours, if you can’t access a liver surgeon to remove them?  For example:

  • patients with a liver only metastases are not always being referred to a specialist liver surgeon to determine if their liver is suitable for a resection and instead are simply being put onto a palliative care pathway. Liver resection is crucially important, because it can, in the best case, lead to a cure or at least prolong life.  Studies have shown that in fact around 44% of those patients when reviewed by a liver surgeon COULD have been resected.
  • Even in areas where people are referred there are huge variations in five year survival, with rates ranging from 25 per cent to 44 per cent.

With variation such as this, it’s not really surprising that the UK performs poorly on survival from advanced bowel cancer.   A recent analysis of survival by stage between six high-income countries found that one-year survival rates among UK bowel cancer patients diagnosed at the earliest stage of disease (Stage 1) were similar to those in the other five countries (96 per cent, compared to 92-98 per cent elsewhere), but survival in the UK was consistently lower for those diagnosed at an advanced stage (7-16 per cent lower than elsewhere).

holistic care

Holistic Care

We want to look at advanced disease holistically.  We plan to look at the whole person and their treatment and care, not just one aspect of it and consider what gaps there are for them and their families, for example around psycho social support.  We know that there are few quick fixes, but with so many people dying needlessly we believe it really is time for a concentrated look at advanced disease – that it is Time for Guts.

 

IHaveGuts

Of course all this needs funding, so we have also launched a fundraising campaign to ask people to help us.  I will be taking part too.   Having settled on a trek, I asked some of my dear friends with advanced bowel cancer which one I should do and the consensus was The Great Wall of China trek – so I’ve signed up!  I go on October 9th and will ‘enjoy’ my first day of trekking on my birthday October 11th!

I admit to being excited and scared all at once.  After all I commute (5 hours a day), I don’t trek!  But the bottom line is I am so very lucky that I have the health to even attempt this.  So many of my dear friends, with advanced disease, have commented that they would love to go to China with me but are just too unwell.

So this is for Gail, Rita, Sean, Mark, Charlotte, Sian, Julie, Kate, Sarah and so many others facing their fears and having their resilience tested to the extreme by enduring so much treatment.

We need you 2If you have been affected by advanced bowel cancer – either as a patient or family member – I would ask you to help us because I know you will understand why this is so vitally important.  As Mahatma Ghandi said: “Strength does not come from physical capacity it comes from an indomitable will” and I firmly believe that it is only through our collective strength and determination that we can make real change, so please join me and take action today and help us to save lives from bowel cancer.

Please:

  1. Share your or your loved one’s story
  2. Take part in your own challenge or simply donate – why not become a LifeSaver’?

or

  1. sponsor me and encourage everyone you know to do the same. I’ve covered all the costs of the trek myself so all donations will go directly to Bowel Cancer UK.   www.justgiving.com/DeborahAlsina1

Thank you.

 

Star of Hope, the international symbol for bowel cancer

About Life, Death and the Pole Star

25 Mar

Forget Me Nots

 

 

On Death,  Kahlil Gibran

‘You would know the secret of death.
But how shall you find it unless you seek it in the heart of life?’

 

 

 

 

My little girl asked me recently what happened when you died. She followed up by saying very seriously: “Mummy I really want to know”… Ho hum. She’s only nine but I felt I owed her a proper answer.  I don’t want her growing up fearful, but to understand death’s place, as part of life.

Her questioning also made me realize that I’ve also been thinking about death and dying a great deal recently.  It’s also the reason I stopped blogging for a while.  I lost my words and ability to coherently describe what I felt and why I feel so passionately about the work we are doing at Bowel Cancer UK.  I have been struggling because in the space of a few short weeks, earlier this year, five people, who I knew and cared about, died of bowel cancer.  I have grieved for them all.  My grief has been further compounded because every day I am in contact with people who are incurable and I don’t want to lose them.  If I allow it to, the world can quickly seem darker and colder just at the thought of that.

Yet recently I’ve been at several events where the spirit of people we’ve lost due to bowel cancer was present, almost palpable, but I’m not talking ghosts here … let me explain.

Rosi pictue

Rosi Kirker-Miller

In my first post I wrote about Rosi Kirker-Miller, a wonderful woman from Northern Ireland who tirelessly campaigned for greater awareness of bowel cancer and better screening despite knowing she could not be cured.  Her family and friends have, since her passing, continued her campaign and become tireless supporters of Bowel Cancer UK and before Christmas organised a fantastic business lunch for the charity.  It was a roundtable discussion about what Bowel Cancer UK should be doing in Northern Ireland – everyone there either knew Rosi or knew of her.  References to her and stories about her filled the conversation and the spirit of Rosi – her determination, charisma and humour – surrounded us all.   I’ve always joked that Rosi benevolently haunts me and gives me a sharp dig in the ribs if I become despondent or lost trying to find that elusive breakthrough moment.  In fact, just thinking about her reminds me that giving up is just not an option!

Suzy Ferguson

Last Friday I had the pleasure of attending another event where the spirit of someone we lost too early shone through.  Sadly Suzy Ferguson, passed away due to bowel cancer, on 26th July 2012 aged just 31 and in her memory Gorkana Group and Lewis PR launched a new PR award which also benefits Bowel Cancer UK – the Suzy Ferguson Spirit Award.

They describe it like this:

“Suzy was an inspirational person, whose work impacted clients and fellow professionals. Suzy also worked tirelessly in the community outside her work, even after she was diagnosed with bowel cancer. Her spirit and talent positively influenced every organisation she worked with.

 To honour her memory, Gorkana Group, in partnership with Bowel Cancer UK, is launching this unique PR and comms industry award.

 Unlike other awards that only acknowledge professional achievements, the Suzy Ferguson Spirit Award aims to recognise individuals of exceptional character, integrity and determination.”

At the lovely awards ceremony, we heard about the five finalists and why they were shortlisted.  Not pushy, flamboyant or full of gloss and self-serving ego – they were all delightful.  In a world where too often it’s the superficial that gets attention, this was a refreshing change.

I had the privilege of meeting some of Suzy’s family and friends and like Rosi – the spirit of Suzy – what she represented to those who loved and cared for her –  was there.  I didn’t have the chance to meet Suzy, but I came away thinking this was someone I would have liked.  Rosie Warin, from Forster, won the award and she certainly seemed to embody all those great qualities.  Congratulations Rosie!

Katie ScarbroughIn my short speech that day I talked about another bowel cancer patient who moved me, Katie Scarbrough, and it reminded me that I tell stories a lot, at work and home, about people we have lost to bowel cancer.  Stories full of hope and desperation, fear and courage. Perhaps it is this that is behind my daughter’s questioning?  In so doing I seek to help others understand why this matters.  I use the memory of those we have lost, as my pole star, helping me navigate better even through dark days so I remain focused on what we must achieve.

And that’s what I told my daughter, that for me, living a life of ‘character, integrity and determination’ is the right way to live and that even when people are not there physically any more they can remain with you.   I don’t believe love and friendship just stops when you can’t see someone anymore.  The memories and essence of them remains as long as you keep it alive within you and pass it on to others.  I hope she grows living her life to the full but understanding that death doesn’t need to be final.

 

 

Bowel Cancer Star of Hope

 

 

For Tony Levy, a man I came to admire for his kindness, compassion and generosity of spirit and who I miss every day.

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

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