Archive | August, 2014

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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