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

9 Responses to “Heart aches, inspiration and fundraising”

  1. Katie January 30, 2013 at 12:10 pm #

    Really lovely blog Deborah. You’re doing a fab job to raise awareness of bowel cancer. xx

  2. LESLEY SHANNON January 30, 2013 at 5:33 pm #

    Well done Deborah. I am so pleased that you have started this blog which is very much needed to bring this subject of young people developing bowel cancer to the forefront. Hopefully this will educate people in that if they think they have any symptoms at all go to the GP and do not hesitate to keep going back if they do not listen to you in the first instance. You have an incline when something is wrong with you. So please if there are any young people out there reading this wonderful Blog that Deborah has started go and seek help and get it dealt with quickly.

    Thank you for this blog Deborah and I am sure you will reach the initial target in no time at all.

  3. Jane oldfield February 12, 2013 at 5:53 pm #

    I had bowel cancer at the age of 32 I went to the doctors many times and was told I had piles but I knew there was something wrong . I was losing a lot of weight and did not feel right . I was told many times that I was too young to have bowel cancer and if it hadn’t been for my husband and mum I wouldn’t be here now . I had my tumour removed had a stoma and chemo . In 2010 I had most of my bowel removed as I have a genetic condition which means I grow polyps which turn cancerous if not removed . I tell everyone to take notice of any changes and not to be scared to talk about bowel movements and your bum we all have one and it does the same thing bowel cancer is one of the easiest cancers to treat if caught early people are just embarrassed to talk about it don’t be it could save your life .

    • deborahalsina February 13, 2013 at 8:22 am #

      Thanks for sharing Jane. Hope you are now doing really well.

  4. Anthony levy March 20, 2013 at 8:34 pm #

    Well done Deborah making a big difference to helping us under 50s being noticed. Changing the way and moving forward in helping people getting an early diagnosis thank you for making a difference!!!!!!!!

  5. LESLEY SHANNON April 20, 2013 at 8:10 am #

    Tried to leave a message to wish you all the best for your sky dive today and well done to NIK NOM for joining you. You do so much for people like Laura @paperdollybird our beautiful daughter who passed away at 31 years old 4 weeks after being married and she should still be here with us. Deborah the CEO of Bowel Cancer UK is doing this to make a difference and to educate GP’s and everyone that this has to stop and should not be happening my beautiful Laura should be here with me today. It is sunny, we should be going shopping or taking the dogs to the beach instead I am typing this in tears. Well done Deborah and the Never2Young Campaign and all that you do for me and have done for Laura @paperdollybird. We will never forget what you do every day and night. You have a 24 hour job Deborah and I have never seen such dedication you deserve recognition in form of OBE, MBE and I know that will come at a future date and I hope I can be there to see you receive this reward. We love you Deborah. Lesley Shannon @BEAUTIFULMUMSIE

Trackbacks/Pingbacks

  1. Gravity, fear and friendship | Taking Action: Deborah's blog - April 22, 2013

    […] and those who have lost loved ones and whose grief is still so raw.  My dear friend Lesley’s comment (Laura’s mum) on this blog quite frankly finished me off but it also made me even more […]

  2. Victims or Survivors? | Taking Action: Deborah's blog - May 13, 2013

    […] – 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, […]

  3. About Life, Death and the Pole Star | Taking Action: Deborah's blog - March 25, 2014

    […] my first post I wrote about Rosi Kirker-Miller, a wonderful woman from Northern Ireland who tirelessly campaigned for greater awareness of bowel […]

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