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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.

D-Day

25 Sep
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The Chapada Diamatina National Park, Brazil

Wow! In just a few hours I’m heading to Heathrow and meeting my trekking group at 3am for our 6am flight.  That’s actually quite scary!   I had naively thought this trek would be a smoother build up than it was for China – that my nerves would be less, that my training would be easier, that I’d manage my long to do list better but actually – a bit like having a second baby – it’s not been easier, just different.

There have been a new set of challenges to tackle these last few months.  I mean who’d have thought my lovely comfortable walking boots would decide to start to hurt for the first time, just five weeks from departure.  Or that after finally realizing there was no remedy that I’d only have two weeks to break in a new pair.  Well that’s certainly upped my trek adrenalin levels but whilst not 100% worn in, the bottom of my toes are no longer blistering so that’s a definite win!

Of course I will be fine – it’s simply a long walk after all.   I will do what I can before I leave and the rest will just have to wait.  The world won’t end if I don’t clear my to do list or if I forget my toothbrush – there are normally solutions.  Everything falls into perspective somehow when you work in and live around cancer.  After a period of relative stability, it’s been a tough few weeks with various patient friends struggling with recurrences, complications, side effects and terrible news that the cancer is now incurable.

That, of course, is why I’m going – to show my solidarity, to take action, to do something practical to try and raise funds for research to improve the early diagnosis of bowel cancer so these tragic experiences stop once and for all.  After all 9 out of 10 people survive bowel cancer if it is diagnosed at its earliest stage but currently only 1 in 10 are diagnosed then.  Far more  – over 60% – are diagnosed when there is at least local spread into the lymphatic system or with a secondary tumour.  That makes treatment so much tougher and the odds significantly worse.  It’s also why Bowel Cancer UK’s new research programme will focus on identifying the highest risk groups and look for better ways of preventing and detecting bowel cancer early.  But this requires money and so that’s why I’m happy to go way out of my comfort zone, control my nerves and fly to Brazil to take on this amazing challenge.

If you are still not sure why you should sponsor me and help Bowel Cancer UK – this blog from lovely Gina Shergold, whose husband Steve was diagnosed at the age of 30 and is now only 33, should explain it better than I ever can.

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Gina, Steve and Esmee

Heartbreak. The Worst One Yet

by Gina Shergold

I’m going to try and keep this one relatively short because I don’t think my brain can handle too much more right now.

The last time I wrote, we were waiting for a CT scan and the for the new trial treatment to start.

For the past 6(ish) weeks, we’ve been going into hospital regularly for blood tests, consent forms and so on to get Steve up and running on the trial, and on Thursday last week he had a physical exam to make sure he was well enough and showing no sign of infection etc, with a view to him starting the trial this week.

On Thursday afternoon, we had a call to say that it turns out the trial had been closed for a while and that Steve could no longer participate. They asked us to come in today to discuss other options.

So today, we went in for a meeting with the oncologist and were hoping he would have news on a different trial.

Instead, he told us that there is currently nothing available, and that we are now dealing with a “terminal illness” – incurable.

We are absolutely devastated, shocked beyond belief and heartbroken.

We also learnt that his spine has got in on the cancer action, and more than likely his liver, too, although that part isn’t confirmed yet.

They will keep looking out for trials, and as soon as one comes up that Steve is eligible for, we will be informed and he’ll be put forward for it (provided he wants to be).

Steve has slept for most of today through sheer exhaustion.

I feel numb to the point where I can’t feel my feet on the ground, but at the same time, I’m  in more pain than I’ve ever experienced in my life.

I don’t really know how I’m still standing at the moment but we both agree that we will not give up, we will keep fighting and live every day to the fullest for our baby girl and for each other.

Sorry it’s a short, blunt and pretty rubbish one, but I wanted to keep everyone updated. I’ll write again when I have more information and/or when my head is feeling a bit less fuzzy.

Gina xx

We have to stop this.  We have to stop the pain and anguish bowel cancer causes.  We have to stop people dying and WE CAN – but we need money to invest in research, to raise awareness, to campaign for best treatment and care across the UK.  We need your help.

This is going to be my last fundraising challenge for a while – as I can feel the fatigue with my endless quest for sponsorship – but if you could sponsor me, just one last time – for Gina, Steve and baby Esmee – for everyone affected by this awful disease, it would be awesome.

You can sponsor me by visiting my justgiving page: www.justgiving.com/deborahalsina4

or simply text: GUTS68 £5/£10 to 70070

Thank you

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

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Thank you

Today’s the day!

9 Oct

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

bags

Walking boots – check

Trekking gear & waterproofs – check

Sugary snacks – check

Paracetamol, ibuprofen, imodium – check

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

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

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

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

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

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

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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.

 

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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!

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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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About Life, Death and the Pole Star

25 Mar

Forget Me Nots

 

 

On Death,  Kahlil Gibran

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

 

 

 

 

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

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

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

Rosi pictue

Rosi Kirker-Miller

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

Suzy Ferguson

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

They describe it like this:

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

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

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

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

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

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

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

 

 

Bowel Cancer Star of Hope

 

 

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

Richard Branson and kissing frogs

2 Oct

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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

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