Tag Archives: Rosi Kirker Miller

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.

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

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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