Tag Archives: Bowel Cancer

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.

It’s all about people

23 Jul
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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…

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…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

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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…

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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
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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.

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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

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