Tag Archives: Deborah Alsina

Glorious Brazil

12 Oct

20151005_154651Woo hoo I did it!  I successfully completed my trek in the Chapada Diamantina national park in Brazil with my dear friends Judith Vosper and Helen Taylor.   It’s been quite an adventure so we are all feeling pretty chuffed!

I left my blog rather abruptly, in part due to total communications blackout and in part because it was such a rich experience – a physical and mental challenge – that I needed to process the whole experience to be able to find the words to write about it.   But where to begin? Whilst I was sponsored to push myself through a hike, actually that has been just one part of the challenging adventure I’ve been privileged to experience.  I will try and explain.

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One of our stunning views over the Patti Valley

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One of my favourite views from St Ignacio’s hill over the beautiful flat top mountains.

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Walking between the flat top mountains

The Chapada Diamantina is one of the most beautiful places I’ve ever seen.   We were blessed to stay for much of our time in a very remote area of the national park, around 3 hours walk from the nearest town without access to mobile signal or even satellite phone connection.   The area is famous for its history of diamond mining, flat top mountains and for a rich abundance of plants, flowers, butterflies, birds and even jaguars and armadillos we were told.    It also has a varied array of bugs but more on that later!  Our trek took us on paths through the valleys, including the glorious Patti Valley which is stunning and up and down those flat top mountains.  We regularly walked by streams and rivers and enjoyed the spectacular waterfalls and swimming in  the many natural pools to cool off after a long trek. 20151001_153155 20151001_153248 20150929_125614

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So pleased to find some shade at last!

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5.30am in the Chapada Diamantina – many mornings started like this.

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River crossing!

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The only way down! A narrow ledge and a sheer drop was at the bottom.

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A ‘Technical’ sheer descent!

There were a number of big challenges on those long walks.  Worse than distance covered or sharpness of incline was the heat. It was frequently in the 30s as we walked and all too often almost devoid of any shade.  Our rest stops often included us all huddled together in any small patch of shade we could find or taking it in turns to take a break from the sun.  Who’d have thought that sun lover me,  would be so grateful for the overcast mornings when we tried to break the back of steep ascents.

As well as getting a fierce reminder of the power of the sun so close to the equator, I also learnt a new trekking term – technical!  It appears that when applied to a days hike in the Chapada Diamantina it implies steep scrabbly ascents or scary almost vertical descents.   We were regularly climbing over rocks, stones, tree and plant roots on very steep slopes which required attention all the time or you risked a nasty fall.   I’m grateful that my childlike grazed knees and legs are the only remaining proof of their challenge.

Bizarrely I loved those bits the most – the sheer physicality and determination required to drag myself up and down those hillsides was a kind of therapy from my day to day existence of long commuting journeys on First Great Western!  Completing them – even though every muscle in my legs ached – gave me a sense of achievement.

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Our path up!

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I just loved the tree ferns

Perhaps the trekking day I enjoyed most was when we walked through the rain forest surrounded by fascinating plants and the wonderful calls of birds to accompany us.  We saw hummingbirds, paraquets and all sorts of other birds with bright beautiful plumage. I would have liked to have quietly sat and watched and listened but the climb up and down was pretty tough and the schedule didn’t permit it.  It was just glorious though to walk through the dappled light of the trees and majestic trees ferns with the loud interesting sounds from the forest all around us.  That particular ascent included having to walk through a very dark cave which was definitely out of my comfort zone.   With only head torches to guide us through the cave it was challenging and I was pleased when I finally scrabbled out through the narrow gap in the rock to continue up the hill to reach the top.  Thankfully it was so worth it, as the view was amazing!

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The view after our long climb – awesome!

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Me finally emerging from the cave – feeling pretty happy!

Another day we walked for several hours  up hill across the scorching top of a flat top mountain to the site of what should have been a spectacular waterfall.  It was the only image I had googled before I visited and was truly excited to be seeing it.  Unfortunately it was dry – it turns out I need to return in the wet season to see it flowing but the view was staggering anyway.

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Tiago, our lead guide, checking out the staggering view but no waterfall!

Bizarrely I also “enjoyed” the challenge of a particularly steep almost vertical descent one day over rocks and boulders and skirting narrow ledges with huge drops.  I guess after a long and fairly dull ascent and walk across a hill, it was a welcome challenge and certainly got my endorphins flowing again.   There had, in fact, been an option for some of the group to take an easier path down but sadly it was blocked by a fire (fairly frequent in the national park apparently) which swept over the hillside.   It was pretty devastating to see the hillside so badly burnt and the path we had climbed down lost in the burnt ground when we passed by again a few days later.

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The scorched hillside post fire. We had walked pretty much straight down it just a couple of days before as the fire began to take hold.

Many in the group found the treks pretty challenging, in part because of health issues.   On day one my friend Helen had a serious problem with her eyes which was very worrying.  She doesn’t have any known allergies but for some reason as we trekked through the valley her eyes became incredibly red and sore.   She could barely see as she walked which was terribly distressing for her but by evening it had cleared a little.  For the next few days it returned thankfully not so badly – but washing her eyes out with saline became part of our post trek routine.

Another member of the group was stung by a hornet on her leg which then proceeded to swell badly.  We were all terribly worried about it as the pain started to spread up her leg but eventually she found the stinger and pulled it out and that or the dose of her own antibiotics seemed to do the trick.    As the satellite phone didn’t work at all and we didn’t have a doctor with us we were pretty fortunate my friend Helen is a very experienced nurse.   Definitely something for the trekking company to address for such a remote trek in the future as the risks – simply due to the nature of some of the walks – are considerable.

I was lucky compared to others as I simply developed a stinking cold in the first couple of days and spent 10 days sneezing, coughing and not sleeping well and of course ended up infecting others in the group (so so sorry).   A cold is hardly something to moan about but on this occasion it certainly added to the challenge.   The lack of sleep also probably contributed to me picking up another bug post trek during our stay in Salvador and Rio.   I felt great on my last day though!

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Our room at homestay 1

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Homestay 1 and its glorious loaction

I have to admit, I find sharing a room at night with anyone other than my husband (and children at a push), a challenge.   We did stay in a couple of very pleasant hotels in Salvador and Lencois on arrival and in interesting Capao (a place I’d love to explore more)  but as we moved deeper into the national park it all got much much more basic!   In our first home stay, five of us were sharing a room – along with a host of mosquitoes and other more ‘interesting’ bugs thanks to the ventilation created by the lack of join between the ceiling and floor in many places!     One memorable night, Helen, Judith and I cried with laughter and horror as we tried to work out how to rid ourselves of a particularly nasty looking creature crawling around our bedroom walls.   Oh how I missed my husband that night!

We spent three nights in that first home stay and far too much of mine was spent lying awake, sniffling, sneezing and coughing, listening to the others sleep and feeling desperate to join them.  In moments of desperation I’d quietly leave the room and watch the changing shapes of the stars – beautifully clear and unblighted by any light pollution.    I’ve rarely seen the Milky Way more clearly than in the Chapada Diamantina during my solitary middle of the night star gazing trips and I’m glad to have seen that.

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My bed at homestay 2

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Homestay 2 – what a beautiful setting

Our second homestead, also the most beautiful setting amongst the hills, was again without any electricity in the rooms and was also devoid of a fully working toilet!  Thankfully it was only the clean water that sprayed out all over the bathroom when flushed and we went to “sleep” worrying we would hear screams during the night as it finally collapsed totally over some poor fellow trekker.  In fact if wasn’t the toilet fears or concrete beds that woke me in the middle of the night, rather it was the scuttling of a cockroach close to my head, followed by a cockerel starting its morning calls outside our window at 1.30am….aaaarrrrggghhh.   After a week of serious sleep deprivation that cockerel was the final straw as we were due up at 3.50am to start a long steep ascent before the sunrise when it was cooler.

To be honest none of it bothered me much – I saw it all as part of the challenge I’d taken on but I know others found it quite hard.   Treks and accommodation like that are definitely not for everyone and there’s no shame in that.  I just felt blessed to be there and the dirt, bugs and challenging sleeping arrangements just made the ‘highs’ that much richer and sharper somehow.   Who’d have thought I’d feel like that but I’ve found that when you are doing something for a reason – for me to raise funds to help save lives – most adversity can be overcome.

Despite the challenges of our sleeping quarters and itchiness of our mosquito bites we were blessed with some great food at all our accommodation – lots of traditional beans and rice but also wonderful vegetables, fruit and cake.   At homestead 1, we also had the very best coffee any of us had ever drunk.  It was grown, harvested and dried right there on the farm. I wish I could have brought some home.

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My brilliant trekking group with porters and local guides.

I’m one of those people who as I’ve got older has come to enjoy some quiet solitary time – perhaps because my work involves lots of lovely contact with people.  I have come to love walking at home in the Cotswolds with just my dog so I can really soak up the beauty of my surroundings and rebalance.  Therefore, long days with 14 others (including the local crew) without a place to hide away was always going to be a challenge for me and I suspect for many others as, inevitably, everyone went through highs and lows.    Yet I felt so fortunate to be with these wonderful people, it was a fantastic group.  It was made up of lots of very experienced trekkers – all totally up for pioneering this new trek for Discover Adventure, our trekking company.   All without competition or any type of malice – just support and a great deal of laughter.

Eventually, I found my quiet ‘happy head’ time by taking endless photographs. I developed a technique of walking at or near the front of the group so I could drop back to take my pics as I tried to capture the beauty of the place and could then catch back up again so not holding anyone up.   I was interested in the therapy it gave me as it made me really look at my surrounding and take in the changing light, the amazing views, the glorious plants as I tried to find the perfect picture angle.  David Bailey I certainly am not,  but taking the photos and reviewing them gave me lots of quiet pleasure.

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A stunning sunset on our first evening in the park

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I totally loved the reflections in the streams and pools we passed.

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Dawn breaking over the mountains… just beautiful

I think many of the group missed their family and friends at points.  I found leaving mine incredibly tough as I know did my friend Judith.   At the end of the trek the tears fell when my first message from home brought me the news that my little girl had fallen over a wall and badly hurt her nose and face and had to be taken to hospital to be checked out.   She’s fine but I felt such dreadful guilt not being there for her or being able to take my younger son to visit some universities or help him resolve his uneasiness about universities and course choices he has been feeling.   Of course it will all be fine and I was there for a reason but it all adds to the challenge.

Yet despite the challenges or perhaps because of them, overall I loved it.  It’s definitely been much tougher than China but I feel pretty proud that I can face my fears and take on and conquer a challenge like this.   Best of all I have laughed a lot, been blessed to visit a truly amazing place and come out with incredible memories which will stay with me always.

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With my lovely friends, Helen and Judith finally in Rio.

I’m not adverse to taking on other challenges for Bowel Cancer UK if it helps but I’m going to take a break from fundraising for a while as this undoubtedly is the worst aspect by far of any challenge.   People have been so generous but I know are fed up with my sponsorship requests and I simply don’t have time to organise events or have access to a rich list address book (although I’m trying to change that!).   Over these last challenges I’ve raised through sponsorship and gifts in kind around £30k which isn’t too bad but I’d still like to reach £50k eventually.

Best of all, lots of other people have joined me and taken on a fundraising challenge for us as well and that’s awesome.    I am truly grateful for everyone’s support because it’s only together that we will finally stop bowel cancer.
So just one last request…. If you can please sponsor me – the page will be open for a bit longer.   Thank you.

Www.justgiving.com/deborahalsina4  Or TEXT GUTS68 £5/10 to 70070

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#WeHaveGuts #IHaveGuts Thank you for your support.

Thank you for your support.  We all truly appreciate it.

So it begins…

28 Sep

SalvadorAfter a pretty much sleep free night Judith, Helen and I met at 3am at Heathrow along with our trek leader Phil and the rest of our trekking group.  After what felt like never ending hours of waiting around or flying later (London – Lisbon, Lisbon – Salvador),  we finally arrived in Brazil.  After 24 hours of only a bit of plane sleep I was pretty excited to finally arrive at our first hotel.   We had some time to freshen up then went out for a delicious dinner and had our first briefing about the trek.  It’s a nice size group only 12 of us including Phil and there are many very experienced Trekkers amongst them but all seemingly chilled and uncompetitive.  Phew!

The first morning we left at 8am for a tour around Salvador.  Whilst Helen, Judith and I were keen to get going actually it was a good beginning, as we are all still pretty shattered from the travelling.  Salvador is the third largest city in Brazil and was its capital for many years.  It’s right on the coast and is on two levels – upper town has the old historic centre and is more residential, and lower town is more of the commercial centre but as we drove past clearly has a lot of houses too.

Buildings in SalvadorWe drove to the lighthouse on the seafront and had a chance to walk around the historic old town.  I really like the multi-coloured buildings and cobbled streets.  It reminded me of Havana – similar style buildings and lively vibe with people out in the streets and lots of music blasting out of bars and town squares.

In the afternoon we took our third flight to Lencois which is the gateway town to the Chapada Diamantina.   It’s in the middle of nowhere – perfect – and we were all super excited to finally be here.  We were warmly greeted by our trekking guide Tiago – another super cool Discover Adventure local staff member whose English is excellent.  We were all immediately impressed.  Straight away we drove to the edge of the Chapada Diamantina for a short walk up Father Ignacio’s hill.  It’s a short walk and a scramble up rocks but oh my goodness the views were breathtaking.  I have so been waiting for that view!

Deborah and JudithEven better we were able to watch the sunset which was spectacular.   All the tiredness melted away – I felt energised, excited and ready for the challenge ahead.  The day ended with a lunar eclipse… Wow!

The jetlag remains and I’m up early – 6am – and am delighted to be greeted by sunshine and incredible birdsong and glimpses of red and yellow plumage.  I feel so blessed to be here and experience this – even the nerves and tiredness.  So many of my patient buddies would love it here.  Somehow knowing that makes the whole experience more precious and intense.  Deborah and HelenI will do this for them because bowel cancer is a cruel indiscriminate disease and it’s time it was stopped for good.  So if you can please help by sponsoring Helen, Judith and me to fund bowel cancer research so we can find ways of identifying bowel cancer earlier when it’s most treatable.  It truly will help us save lives.

We leave Lencois today and will have our first full day of trekking in the Chapada Diamantina.  We are so ready.  Bring it on!

Click here for our JustGiving page.

Richard Branson and kissing frogs

2 Oct

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“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
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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.

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‘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

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

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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…

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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

Mid Life Crisis?

20 Mar

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My closest girlfriend called me the other day to tell me she was worried I was having a mid-life crisis.  She had just heard that I’d signed up to do a skydive and called to talk me out of it – bless her.  My dear friend of 26 years had decided I’d lost the plot finally – maybe she’s right. I mean – why else would you offer yourself up to be thrown out of a plane?

Well I had some reminders recently of why I’m relatively confident about my sanity levels …

Never Too Young

This week Bowel Cancer UK launched a new campaign. ‘Never Too Young’ with the aim of improving the diagnosis, treatment and care of younger (under 50) bowel cancer patients in the UK.  Our campaign film highlights just why this is so important. 

To inform our campaign we conducted research into the experiences of younger patients which we summarised in our Never Too Young report. 

One of the findings that stood out for me was that younger patients are experiencing delays in diagnosis for two main reasons.  Firstly, GP’s are delaying referring people through for diagnostic tests and in fact 42% of women,  compared with ten per cent of men either saw their GP more than five times before being referred to a specialist, or were diagnosed as an emergency before being referred.

Secondly, over half (60%) of patients were not aware of the symptoms of bowel cancer prior to being diagnosed, and were not aware of bowel cancer as a disease younger people could develop. A quarter of people (25%) waited over 6 months to see their doctor as they didn’t realise the significance of their symptoms or felt reluctant to discuss them.  This can have terrible consequences and has for Laura.

Laura was 30 when she was diagnosed with bowel cancer.  She had symptoms for nearly two years before she was diagnosed.  Unfortunately, she didn’t understand their significance and was re-assured when her doctor told her that it could not possibly be bowel cancer because she was too young.  The terrible pain in her tummy was put down to painful periods and the bleeding she experienced on and off for two years wasn’t investigated.  Unfortunately when she was finally diagnosed at the age of 30, the disease had already spread to her liver and her lungs and is now in her bones too.

Laura happy on her wedding day

Laura happy on her wedding day

Despite gruelling treatment, on the 1st March, Laura married her fiancée Alan at their dream wedding in Scotland.  Yet instead of going on her honeymoon, she had to go to hospital to start a new round of palliative chemotherapy instead.  Every contact I have with Laura and her lovely Mum Lesley makes me ache, because I can feel their pain and grief, yet they are amazingly supporting our Never Too Young campaign because they want this to stop.  After all, this should not be happening to Laura, to anyone.

Laura and Alan

Laura and Alan

 

Bowel cancer is treatable but early diagnosis makes that much easier.

Finding Solutions

I know that some will think that our focus on younger patients is a ‘red herring’ because the number of people diagnosed only represents 5% (c. 2,100) of the 41,000  diagnosed each  year in the UK.  I strongly disagree.

To me those c.2000 patients, represent, 10,000 patients over 5 years, 20,000 patients over 10 years – and each one has hopes, dreams and family and friends who love them and whom they love.  They deserve the same chance of and have the same right to life as anyone else.  I resolutely refuse to give up on them simply because they are difficult to target or detect.

However I do acknowledge that the solutions are not straight forward.  GPs for example, have an incredibly difficult job to identify those patients they should be referring on for diagnostic tests.   They will see many young people who have symptoms that could be bowel cancer but may only see a few cases (if that) during their career in the under 50s.   They are also under pressure to refer less people through to endoscopy teams who are over-stretched and under-resourced.

We need to find a solution that empowers and enables GPs to make those difficult decisions and build the capacity of our endoscopy units to ensure they can provide high quality services to meet rising demand.   That’s why we are calling for the development of a risk assessment decision aid tool to be developed for GPs around bowel disease, sustained investment in endoscopy services so this is not a barrier to diagnosis and a registry of younger patients to be set up, so we can better understand the epidemiology of cancer.

Information and Support

Our report also highlights gaps in information and support for younger bowel cancer patients. Only 1 in 4 women and just fewer than 1 in 2 men were happy with the levels of support they received.

Isolation and loneliness is felt by many younger bowel cancer patients. Although peer support was identified as a major factor that could have improved treatment more than half of patients felt that they had no-one their age with bowel cancer to talk to.

Younger patients inevitably have different concerns from older patients – many have concerns about how treatment will affect their fertility, their body image and sexual relationships.  Looking after young children is also a major concern for some.

Katie, husband Stuart and children Sophie 4 and Sam 8

Katie, husband Stuart and children Sophie 4 and Sam 8

Katie, 32, a former national junior ice skating champion has been highlighting the issues she is currently facing in her moving blog, as she tries to come to terms with the reality of  having terminal bowel cancer.   Several recent newspaper articles have highlighted her despair at the prospect of leaving her young children of 4 and 8 without a Mum.

Katie now

Katie now

Katie and her family and friends are currently fundraising for Bowel Cancer UK and remarkably despite all that she is going though she is determined to raise awareness and is supporting our  Never Too Young campaign.

I so wish she didn’t have the personal insight about why this is so very important.

The skydive approaches…

So as I told my lovely friend, I’m OK about jumping out of a plane, despite the fact this is not in my job description and I am absolutely not doing this for ‘fun’.  I’m not an adrenalin junky, I’m not into heights and have no personal desire to put my life in the hands of another person whilst hurdling towards the earth and I’m particularly petrified of landing.  Skydiving has NO appeal to me whatsoever BUT if our amazing patient supporters show such determination to raise awareness and funds, how can I not also face my fears and join them.

So as I have said before, if this resonates with you, if this matters to you and you want to be part of ensuring that younger cancer patients have a bright future please support or join Laura, Katie and me.  Please help us raise awareness and funds so Bowel Cancer UK can continue to campaign for younger patients and further develop our information and support services for them.

Or just sponsor me. http://www.justgiving.com/deborah-alsina

You can also donate via Bowel Cancer UK’s website by following this link. 

Thank you in advance for your support.

If you are concerned about any aspect of bowel cancer, Bowel Cancer UK’s information and support line, staffed by specialist nurses can be reached on freephone: 0800 8 40 35 40 or you can email: support@bowelcanceruk.org.uk

Heart aches, inspiration and fundraising

28 Jan

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“Chemo delayed, blood transfusion, fractured pelvis and possible cancer spread… still hoping to get to London nxt week for wedding dress fitting!” a tweet from a 31 year old advanced bowel cancer patient

“ x’s tumours have grown.  She now has tumours in her ovaries.  She may now not have long left.” From the husband of a young patient, mother of 3, with advanced bowel cancer

There are days when I could simply weep with the terrible news I hear about the impact of bowel cancer on people’s lives.  I am in touch every day with many people who are facing an uncertain and frightening future and I am always deeply moved by their experiences and humbled by the dignity and strength with which they face great adversity.   Along with the heart ache I also feel angry because I know that especially if bowel cancer is diagnosed early it can be cured.  People should not be dying from this disease yet 16,000 people do die, every year.

Working for Bowel Cancer UK, I am so fortunate to walk alongside people going through treatment – to share their ups and downs, hopes and fears.  Celebrating the ‘all clear’ with them is quite simply amazing.  But from personal experience, I also know what it is like to have the appalling realisation that when the suffering is too great, that saying good bye to someone you love is sometimes a blessing.

Saying you are passionate about something is rather a cliché yet for me, about saving lives from bowel cancer, it is an apt description and I fully admit that I take this far too personally.  I genuinely care deeply about bowel cancer patients of any age, having lost my own father to bowel cancer at 79 but right now there is something I want to do for younger patients.  That’s because I think they are being let down.

Young people – and I’m talking about all those from their teens into the 40s are a tough group to target.  Bowel cancer in this age range is relatively rare – only 2,000 people are diagnosed every year compared to 39,000 over 50.  That means the Government/NHS focus is predominantly on the larger group.  I do understand that as no-one wants to cause mass panic – or to ‘flood’ GP surgeries with the worried well.  However patients regularly tell me that they wish they had been aware of the symptoms and acted quicker, as prior to their own diagnosis they thought it was just an ‘older’ person’s disease.  Or that they wish their symptoms had been taken more seriously because when they eventually were diagnosed, their cancer was very advanced.  We must find a way to change this as ALL of their lives matter.

Losing someone far too young can have a profound effect on so many people and at Bowel Cancer UK we are regularly blown away by the amazing support we receive from families and friends of young patients who want to help stop this happening to others.  My heart goes out to all of them as their pain is very real and will never leave them.

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Bowel Cancer UK supporter, Dorcas Crawford (left) with her dear friend and inspiration to me, Rosi Kirker Miller

One patient who had a major effect on me was Rosi Kirker Miller from Northern Ireland.   Rosi was an incredible woman – her cancer was diagnosed very late but she refused to give up and threw her energy into raising awareness of the disease and funds for Bowel Cancer UK.  One evening, driving me back into Belfast after a wonderful dinner with her family, she said to me how she simply wanted to live long enough to get her little boys then 9 and 11 to university.  My heart sank because I knew deep down she wouldn’t and sadly a few short months later she died.  Being Rosi she didn’t let death stop her though.  At her packed funeral service her brother gave a message to us all from Rosi… She wanted to remind us that bowel cancer is treatable if diagnosed early, to act on any symptoms and she urged everyone to get behind and support Bowel Cancer UK.

Wow… I admit at that moment I felt a bit like I’d been punched with the huge weight of responsibility she had placed in me, in us.  She was placing her trust in us to stop this happening to others.  But you know I’m not phased… I’m honoured.   Rosi benevolently haunts me every day and reminds me that the jobs not done yet.  That when it feels really hard and frustrating, like the breakthrough moment will never come, that I need to up my game and do something more.   Her memory reminds me that not succeeding, not ensuring that Bowel Cancer UK meets its mission and saves lives from bowel cancer and improves the quality of life of those going through it, is simply NOT an option.

So I’m thinking out of the box now… I’m tired of being powerless to make a real difference, I have had enough of just listening to heart breaking stories, of knowing people will die through ignorance or lack of timely diagnostic tests.  I’m really tired of never having the funds Bowel Cancer UK needs to deliver services to support and empower people better.    It’s not right and I want to change it, so I’m going to adopt Rosi’s spirit and DO something.

I have absolutely no idea how I’m going to achieve this yet, but I’m launching a fundraising campaign to raise £50K for Bowel Cancer UK’s work with young patients and their families.    I intend to do a number of different fundraising activities over this year including a trek in Jordan but I’m going to start by throwing myself out of a plane on the 23rd March (by co-incidence my dearly loved father’s birthday).

Obviously it’s highly unlikely I’m going to raise £50K without your help, so if this matters to YOU, if this resonates with YOU, please take action – help me.

You can sponsor me, you can join me, you can fundraise too – it will all help.    Together, we have a real chance to make positive changes for younger patients.  Are you up for it?

Change will not come if we wait for some other person, or if we wait for some other time. We are the ones we’ve been waiting for.

 We are the change that we seek.” 
                        ― Barack Obama

To donate please visit:

http://www.justgiving.com/deborah-alsina

You can also set up your own justgiving page but please don’t forget to link it to this team page:  www.justgiving.com/teams/Challenge50K

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