Tag Archives: Charlotte Kitley

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.)

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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