Tag Archives: inspiration

Victim or Survivor?

13 May
struggling image

Struggling…

To have striven, to have made the effort, to have been true to certain ideals – this alone is worth the struggle’

William Osler

 

I’ve been struggling recently.  Struggling with loss, struggling with frustration and a sense of impotence and struggling with anger.   Wonderful, beautiful Katie Scarbrough, who I wrote about a couple of posts ago, died at just 32, leaving two young children aged 4 and 8.   I never met Katie but we spoke, emailed and tweeted and her determination to raise awareness in such difficult circumstances moved me.  I’ve seen it before and if I’m honest I don’t really want to see it again.  I don’t want people to have to turn such deep desperation into positive action.  I want them to laugh freely and be happy.  I want them to live.

Katie looking fabulous in her purple wig with husband Stuart

Katie looking fabulous in her purple wig with husband Stuart

Hearing the terrible news about Katie has also made me reflect on my own reaction to difficult news.  I remember all too vividly when my husband was diagnosed with leukaemia and my father’s diagnosis and death from bowel cancer and how damn cruel and unfair it can feel.  It’s amazing how the ‘why’ questions take over – why me, why us, why now?   Until you find your way forward. That process taught me that you have to make a choice about whether you are a victim or a survivor.

I think what impressed me about Katie – and reminded me of another patient we lost, Rosi Kirker Miller, who I wrote about in my first post – is that even though the disease eventually took them away physically, it didn’t beat them, their spirit remained intact.  They were survivors.   They made sure that out of something dreadful, good will happen.  I admire that tremendously.

Never Too Young bowel cancer patients

Never Too Young bowel cancer patients

So that’s what we are trying to do at Bowel Cancer UK with our Never Too Young campaign.  We are trying to take something really difficult and turn it into something positive.  We embarked on the campaign because we were hearing too many stories like Katie’s.  We thought long and hard about the campaign because we didn’t want to do something trivial – yes the stories will inevitably get media attention – but that’s just not enough.  There has to be substance.  People are struggling and dying so we need to make change happen.

We worked hard to get our recommendations right – we’ve consulted patients and their families and we’ve consulted some of the UK’s leading academic and clinical experts about what could make a real sustainable difference and I think we are on the right track.  You can read more in our campaign briefing.

In short there are two particularly important sets of issues which we believe need addressing:

1. Why are more younger patients developing bowel cancer and is there anything different about bowel cancer in this young age group.  Do they present differently? Are there any genetic links? What is the trigger?  So we are recommending that a registry of younger bowel cancer patients is set up so we can study the epidemiology of cancer in this group.  We also want all younger patients and their families routinely genetically tested.

2.  How can we identify these younger patients more quickly?  So many people have bowel symptoms, but few (thankfully) will have bowel cancer – so who should we be referring for diagnostic tests and what is the right diagnostic test?  That’s why we are recommending that a new risk assessment tool on bowel disease (but including bowel cancer) is developed for use in primary care to help GPs identify which patients to refer and clear guidance developed on which diagnostic test should be used.    We MUST also ensure that screening for high risk groups, for example for those with an inflammatory bowel disease or genetic condition is in place as bowel cancer in this group often presents earlier.

If we can get our recommendations implemented I genuinely believe that we can make a significant difference to younger bowel cancer patients.

You can really help us too by signing our petition asking David Cameron to meet us to discuss this and to take action.  We’ve targeted the Prime Minister directly because this must be an issue for the UK as a whole to address. We cannot simply look at these issues separately in England, Scotland, Wales and Northern Ireland, even though in policy terms, health is a devolved issue.   People are dying or being diagnosed late when treatment is more gruelling but together WE CAN change this.

Katie was a wonderful ambassador for the Never Too Young campaign through her blog, her tweets, her extensive media interviews and when we created the petition I thought about her.  I wanted her to know that we would continue her campaign after she was gone and that her fighting spirit and eloquent articulation of her experiences – often terrible despair at leaving her children – will continue to drive us forward.  We couldn’t save Katie – she was diagnosed too late – but I think at the very least, she would want us to learn from her passing and to work hard to stop it happening again.

So in Katie’s memory, please take action.  Sign our petition now.

Katie Scarborough – Rest in Peace, you will not be forgotten.

 Katie FB1

‘She is Gone’ by David Harkins

You can shed tears that she is gone

Or you can smile because she has lived

You can close your eyes and pray that she will come back

Or you can open your eyes and see all that she has left

Your heart can be empty because you can’t see her

Or you can be full of the love that you shared

You can turn your back on tomorrow and live yesterday

Or you can be happy for tomorrow because of yesterday

You can remember her and only that she is gone

Or you can cherish her memory and let it live on

You can cry and close your mind, be empty and turn your back

Or you can do what she would want: smile, open your eyes, love and go on.

If you would like to donate to our Never Too Young fundraising appeal and help us raise funds to continue this campaign and improve services for younger bowel cancer patients, please visit my JustGiving page: http://www.justgiving.com/deborah-alsina

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

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 by bowel cancer

Mid Life Crisis?

20 Mar

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My closest girlfriend called me the other day to tell me she was worried I was having a mid-life crisis.  She had just heard that I’d signed up to do a skydive and called to talk me out of it – bless her.  My dear friend of 26 years had decided I’d lost the plot finally – maybe she’s right. I mean – why else would you offer yourself up to be thrown out of a plane?

Well I had some reminders recently of why I’m relatively confident about my sanity levels …

Never Too Young

This week Bowel Cancer UK launched a new campaign. ‘Never Too Young’ with the aim of improving the diagnosis, treatment and care of younger (under 50) bowel cancer patients in the UK.  Our campaign film highlights just why this is so important. 

To inform our campaign we conducted research into the experiences of younger patients which we summarised in our Never Too Young report. 

One of the findings that stood out for me was that younger patients are experiencing delays in diagnosis for two main reasons.  Firstly, GP’s are delaying referring people through for diagnostic tests and in fact 42% of women,  compared with ten per cent of men either saw their GP more than five times before being referred to a specialist, or were diagnosed as an emergency before being referred.

Secondly, over half (60%) of patients were not aware of the symptoms of bowel cancer prior to being diagnosed, and were not aware of bowel cancer as a disease younger people could develop. A quarter of people (25%) waited over 6 months to see their doctor as they didn’t realise the significance of their symptoms or felt reluctant to discuss them.  This can have terrible consequences and has for Laura.

Laura was 30 when she was diagnosed with bowel cancer.  She had symptoms for nearly two years before she was diagnosed.  Unfortunately, she didn’t understand their significance and was re-assured when her doctor told her that it could not possibly be bowel cancer because she was too young.  The terrible pain in her tummy was put down to painful periods and the bleeding she experienced on and off for two years wasn’t investigated.  Unfortunately when she was finally diagnosed at the age of 30, the disease had already spread to her liver and her lungs and is now in her bones too.

Laura happy on her wedding day

Laura happy on her wedding day

Despite gruelling treatment, on the 1st March, Laura married her fiancée Alan at their dream wedding in Scotland.  Yet instead of going on her honeymoon, she had to go to hospital to start a new round of palliative chemotherapy instead.  Every contact I have with Laura and her lovely Mum Lesley makes me ache, because I can feel their pain and grief, yet they are amazingly supporting our Never Too Young campaign because they want this to stop.  After all, this should not be happening to Laura, to anyone.

Laura and Alan

Laura and Alan

 

Bowel cancer is treatable but early diagnosis makes that much easier.

Finding Solutions

I know that some will think that our focus on younger patients is a ‘red herring’ because the number of people diagnosed only represents 5% (c. 2,100) of the 41,000  diagnosed each  year in the UK.  I strongly disagree.

To me those c.2000 patients, represent, 10,000 patients over 5 years, 20,000 patients over 10 years – and each one has hopes, dreams and family and friends who love them and whom they love.  They deserve the same chance of and have the same right to life as anyone else.  I resolutely refuse to give up on them simply because they are difficult to target or detect.

However I do acknowledge that the solutions are not straight forward.  GPs for example, have an incredibly difficult job to identify those patients they should be referring on for diagnostic tests.   They will see many young people who have symptoms that could be bowel cancer but may only see a few cases (if that) during their career in the under 50s.   They are also under pressure to refer less people through to endoscopy teams who are over-stretched and under-resourced.

We need to find a solution that empowers and enables GPs to make those difficult decisions and build the capacity of our endoscopy units to ensure they can provide high quality services to meet rising demand.   That’s why we are calling for the development of a risk assessment decision aid tool to be developed for GPs around bowel disease, sustained investment in endoscopy services so this is not a barrier to diagnosis and a registry of younger patients to be set up, so we can better understand the epidemiology of cancer.

Information and Support

Our report also highlights gaps in information and support for younger bowel cancer patients. Only 1 in 4 women and just fewer than 1 in 2 men were happy with the levels of support they received.

Isolation and loneliness is felt by many younger bowel cancer patients. Although peer support was identified as a major factor that could have improved treatment more than half of patients felt that they had no-one their age with bowel cancer to talk to.

Younger patients inevitably have different concerns from older patients – many have concerns about how treatment will affect their fertility, their body image and sexual relationships.  Looking after young children is also a major concern for some.

Katie, husband Stuart and children Sophie 4 and Sam 8

Katie, husband Stuart and children Sophie 4 and Sam 8

Katie, 32, a former national junior ice skating champion has been highlighting the issues she is currently facing in her moving blog, as she tries to come to terms with the reality of  having terminal bowel cancer.   Several recent newspaper articles have highlighted her despair at the prospect of leaving her young children of 4 and 8 without a Mum.

Katie now

Katie now

Katie and her family and friends are currently fundraising for Bowel Cancer UK and remarkably despite all that she is going though she is determined to raise awareness and is supporting our  Never Too Young campaign.

I so wish she didn’t have the personal insight about why this is so very important.

The skydive approaches…

So as I told my lovely friend, I’m OK about jumping out of a plane, despite the fact this is not in my job description and I am absolutely not doing this for ‘fun’.  I’m not an adrenalin junky, I’m not into heights and have no personal desire to put my life in the hands of another person whilst hurdling towards the earth and I’m particularly petrified of landing.  Skydiving has NO appeal to me whatsoever BUT if our amazing patient supporters show such determination to raise awareness and funds, how can I not also face my fears and join them.

So as I have said before, if this resonates with you, if this matters to you and you want to be part of ensuring that younger cancer patients have a bright future please support or join Laura, Katie and me.  Please help us raise awareness and funds so Bowel Cancer UK can continue to campaign for younger patients and further develop our information and support services for them.

Or just sponsor me. http://www.justgiving.com/deborah-alsina

You can also donate via Bowel Cancer UK’s website by following this link. 

Thank you in advance for your support.

If you are concerned about any aspect of bowel cancer, Bowel Cancer UK’s information and support line, staffed by specialist nurses can be reached on freephone: 0800 8 40 35 40 or you can email: support@bowelcanceruk.org.uk

Heart aches, inspiration and fundraising

28 Jan

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“Chemo delayed, blood transfusion, fractured pelvis and possible cancer spread… still hoping to get to London nxt week for wedding dress fitting!” a tweet from a 31 year old advanced bowel cancer patient

“ x’s tumours have grown.  She now has tumours in her ovaries.  She may now not have long left.” From the husband of a young patient, mother of 3, with advanced bowel cancer

There are days when I could simply weep with the terrible news I hear about the impact of bowel cancer on people’s lives.  I am in touch every day with many people who are facing an uncertain and frightening future and I am always deeply moved by their experiences and humbled by the dignity and strength with which they face great adversity.   Along with the heart ache I also feel angry because I know that especially if bowel cancer is diagnosed early it can be cured.  People should not be dying from this disease yet 16,000 people do die, every year.

Working for Bowel Cancer UK, I am so fortunate to walk alongside people going through treatment – to share their ups and downs, hopes and fears.  Celebrating the ‘all clear’ with them is quite simply amazing.  But from personal experience, I also know what it is like to have the appalling realisation that when the suffering is too great, that saying good bye to someone you love is sometimes a blessing.

Saying you are passionate about something is rather a cliché yet for me, about saving lives from bowel cancer, it is an apt description and I fully admit that I take this far too personally.  I genuinely care deeply about bowel cancer patients of any age, having lost my own father to bowel cancer at 79 but right now there is something I want to do for younger patients.  That’s because I think they are being let down.

Young people – and I’m talking about all those from their teens into the 40s are a tough group to target.  Bowel cancer in this age range is relatively rare – only 2,000 people are diagnosed every year compared to 39,000 over 50.  That means the Government/NHS focus is predominantly on the larger group.  I do understand that as no-one wants to cause mass panic – or to ‘flood’ GP surgeries with the worried well.  However patients regularly tell me that they wish they had been aware of the symptoms and acted quicker, as prior to their own diagnosis they thought it was just an ‘older’ person’s disease.  Or that they wish their symptoms had been taken more seriously because when they eventually were diagnosed, their cancer was very advanced.  We must find a way to change this as ALL of their lives matter.

Losing someone far too young can have a profound effect on so many people and at Bowel Cancer UK we are regularly blown away by the amazing support we receive from families and friends of young patients who want to help stop this happening to others.  My heart goes out to all of them as their pain is very real and will never leave them.

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Bowel Cancer UK supporter, Dorcas Crawford (left) with her dear friend and inspiration to me, Rosi Kirker Miller

One patient who had a major effect on me was Rosi Kirker Miller from Northern Ireland.   Rosi was an incredible woman – her cancer was diagnosed very late but she refused to give up and threw her energy into raising awareness of the disease and funds for Bowel Cancer UK.  One evening, driving me back into Belfast after a wonderful dinner with her family, she said to me how she simply wanted to live long enough to get her little boys then 9 and 11 to university.  My heart sank because I knew deep down she wouldn’t and sadly a few short months later she died.  Being Rosi she didn’t let death stop her though.  At her packed funeral service her brother gave a message to us all from Rosi… She wanted to remind us that bowel cancer is treatable if diagnosed early, to act on any symptoms and she urged everyone to get behind and support Bowel Cancer UK.

Wow… I admit at that moment I felt a bit like I’d been punched with the huge weight of responsibility she had placed in me, in us.  She was placing her trust in us to stop this happening to others.  But you know I’m not phased… I’m honoured.   Rosi benevolently haunts me every day and reminds me that the jobs not done yet.  That when it feels really hard and frustrating, like the breakthrough moment will never come, that I need to up my game and do something more.   Her memory reminds me that not succeeding, not ensuring that Bowel Cancer UK meets its mission and saves lives from bowel cancer and improves the quality of life of those going through it, is simply NOT an option.

So I’m thinking out of the box now… I’m tired of being powerless to make a real difference, I have had enough of just listening to heart breaking stories, of knowing people will die through ignorance or lack of timely diagnostic tests.  I’m really tired of never having the funds Bowel Cancer UK needs to deliver services to support and empower people better.    It’s not right and I want to change it, so I’m going to adopt Rosi’s spirit and DO something.

I have absolutely no idea how I’m going to achieve this yet, but I’m launching a fundraising campaign to raise £50K for Bowel Cancer UK’s work with young patients and their families.    I intend to do a number of different fundraising activities over this year including a trek in Jordan but I’m going to start by throwing myself out of a plane on the 23rd March (by co-incidence my dearly loved father’s birthday).

Obviously it’s highly unlikely I’m going to raise £50K without your help, so if this matters to YOU, if this resonates with YOU, please take action – help me.

You can sponsor me, you can join me, you can fundraise too – it will all help.    Together, we have a real chance to make positive changes for younger patients.  Are you up for it?

Change will not come if we wait for some other person, or if we wait for some other time. We are the ones we’ve been waiting for.

 We are the change that we seek.” 
                        ― Barack Obama

To donate please visit:

http://www.justgiving.com/deborah-alsina

You can also set up your own justgiving page but please don’t forget to link it to this team page:  www.justgiving.com/teams/Challenge50K

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