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D-Day

25 Sep
chapada-diamantina-national

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.

Gina, Steve and Esmee

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

Laughter and Tears at the 02

23 Jul

Fireworks

*Fanfare of trumpets* We did it!

Today, Michael, Clare and I conquered the 02.  Of course like most things in life it was more scary thinking about it than actually doing it, but even in overcoming our fears of inadequacy there was a challenge.   I’m a firm believer that it is good to be challenged – I’m prepared to push myself outside of my comfort zone and try something new, because I’ve learnt by skydiving and trekking in China that it leads to the best memories and insight into yourself.

CKngEWWXAAA6AKR

Clare, Tony and Michael

02 group pic

We started with inevitable photos – Clare had organised for Town Crier, Tony Appleton, to proclaim our challenge – he looked wonderful in his full regalia but my goodness his bell and cries are loud!  Then we had a short safety briefing – we were all a bit nervous at this stage as they talked about ropes and harnesses, wondering what on earth was ahead.

We then changed into our climb gear including our harnesses (what a look!) and it took me right back to my skydive with wonderful Nikki.

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Michael and I ready to go

Then we were taught how to use our safety harnesses and away we went.

Funnily enough the first bit is a steep ascent (where you can’t take photos because they want to sell them to you!) and looking up at it, I was transported back to China and actually that made me feel better.  Hey, if I could climb those steps on the Great Wall, I could definitely do this and I remembered that I learnt in China that looking at it was much worse than actually doing it!  In fact, whilst it is steep, it feels a bit like you are walking on a bouncy pillow which is a little weird but it was absolutely fine.

The views from the top were fantastic – it really is a wonderful panorama and thankfully the threatening storm clouds didn’t deliver any rain.o2 panorama

After a steep descent it was all over too soon, so we headed for a late lunch.

Of course much of our talk was about Lynda Bellingham, Michael’s wife, as he remembered all she went through and struggles with his grief, which is still so raw.   I am truly grateful for his support for Bowel Cancer UK – he is genuinely helpful and generous with his time and that is exactly what we need.  Now we need more people like Michael to step up and help us stop this dreadful disease.

We also talked about Clare’s Mother Ann, currently in active treatment for advanced cancer.  Clare’s love for her mother is quite wonderful and I hope my own daughter will feel like that about me too when she is grown.  I’m sure Ann must feel very proud, as she has a beautiful, funny, generous daughter in Clare and we are blessed that she has chosen to support us.  Of course both Michael and I have everything crossed for Ann’s next scan.

For many people challenges like this are a piece of cake but if they aren’t your thing then the challenge is real.  So I feel proud of us.   I have enjoyed  laughter and tears with two wonderful people, started my fundraising and maybe even helped raise some awareness.  A good day.  Now for the next challenge…..

For more information about Bowel Cancer UK, please visit our website.

To sponsor me, please visit www.justgiving.com/deborahalsina4 or TEXT STOP 68 £5/10 to 70070

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It’s all about people

23 Jul
The 02 Arena

The O2 Arena

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

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

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

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

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

charlotte kitleyRosi pictueKatie Scarbroughlaura 61512391_10152214610928377_175815830_nMelanieChrisKate-GrossTony Levy

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

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

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

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

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

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

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

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Challenges and reflections

29 Oct

trek 4

So I’ve been back from China for almost a week and my brain is finally beginning to feel less addled by jetlag and the hour change and it’s certainly good to be home.  My daughter is delighted by her panda bear toy so all is well and I’m almost forgiven for going!

I left my blog rather abruptly to go off to a celebration meal on completing the trek and then took to the tourist trail, spending a couple of days in both Beijing and Xi’an where I visited the Terracotta Army, Terracotta armyinspired, as I mentioned in an earlier post, by my patient friend Gail.  I’m pleased I spent the extra days as it gave me a greater insight into China and its contrasts.  It truly is a fascinating country and culture.

It’s also given me time to reflect on the trek.  I freely admit I was terrified before going – of failure I guess and my lack of time for preparation definitely didn’t help.   My lovely husband stoically put up with the tears and traumas and thankfully once I was at the airport I began to feel calmer and embraced the challenge more positively.

trek 3

That’s me in green! That was seriously steep.

I realise that must sound pretty pathetic but as I noted back in August, I’ve a had a mild phobia of physical challenges since my school days and my life is a bit mad after all, juggling a full on job, long commutes and my most important role as a Mum.  I guess taking on the trek reminded me what a fine tightrope I walk in my day to day life.  So who would have thought that today I would be able to say I loved it.  In fact, I loved every moment of it – even the really challenging bits.

pressing the limitsMy lovely bowel cancer survivor friend Fiona was a particular star in the run up, helping me to fundraise by personally donating, baking cakes to sell and doing an office collection.  She predicted the challenge I felt would make it more worthwhile in this picture she sent to me.  I held onto that thought before I went.  Thank you Fiona, you were right!

So what was so great about it?  Well it proved yet again that if I dig deep and hold my nerve I can extend my comfort zone and it does make the achievement sweeter.   I wasn’t sure I could manage the steep climbs but thanks to will power and focus I did and the views were an awesome reward.   In some places the mountains seemed to go on forever and the sheer scale and beauty of our surroundings was inspiring.  Trek 15 mountains trek 10 I’m now determined to hold onto the feeling of an endorphin fuelled buzz after a tough physical challenge and try and incorporate it into my normal life.  I’m not great at ‘me time’ but I am now hoping to join a local trekking group in the Cotswolds as I think the  benefits to my physical and mental health outweigh the downsides of time away from home.  I am even seriously thinking about doing another trek – I didn’t predict that I would catch that particular bug!

I think it was also great because whilst I didn’t raise as much money as I originally hoped (but I’m still working on that) I did raise some new funds for the charity and we’ve benefitted from some extra media coverage, which all helps to raise awareness.  I’ve also felt blessed by the tremendous support I’ve had from my friends, family, colleagues and my lovely online buddies.  So many people have been incredibly generous with their support and a few have even given multiple donations and I have found that humbling.  Thank you so much to everyone who has donated.

At a time when so many of my patient friends are having a tough time, going through  gruelling treatment, the fact that they still took time to cheer me on across the twittersphere was incredible.   I definitely carried thoughts of them and many we have lost, throughout the trek.

Of course whilst I was away there was the sad news about the death of Lynda Bellingham.  Yet another reminder that there is much to be done and why Bowel Cancer UK’ s Time for Guts campaign is so important.  People continue to die needlessly and I firmly believe its time it stopped.  I hope more than anything that my trek will encourage others to take action too and help us raise further funds and awareness because after all, no one individual or organisation can make the change we need but together we can.

solidarity

If bowel cancer has affected you or someone you love please don’t be a bystander, take action, get involved.  With focus and determination, together we really can save lives.

I hope you have enjoyed the pics and of course it’s still not too late to donate!

www.justgiving.com/deborahalsina1

or Text GUTS72 £5 or £10 to 70070.

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Why failure is not an option

18 Sep

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Star of Hope: an international symbol for bowel cancer

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

Or TEXT GUTS72 £* to 70070.  

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

Facing your fears: #Ihaveguts

27 Aug
Great_Wall_Of_China 19

The Great Wall of China

 

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

― Edward Everett Hale

 

 

 

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

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

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

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

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

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

 

IHaveGuts

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

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

Rafi and me!

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

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

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

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

Thank you in advance. 

 

 

 

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

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

 

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

 

 

 

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It’s Time for Guts

18 Aug

TimeForGuts

 

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

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

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

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

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

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

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

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

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

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

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

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

holistic care

Holistic Care

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

 

IHaveGuts

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

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

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

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

Please:

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

or

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

Thank you.

 

Star of Hope, the international symbol for bowel cancer

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