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

6 Responses to “Mid Life Crisis?”

  1. Hannah Hodge April 25, 2013 at 1:08 pm #

    I was diagnosed with bowel cancer at 33 years of age. I had had symptoms for over a year. I had had some blood tests but nothing showed up. I eventually had a colonoscopy and was diagnosed with a genetic condition that had caused the cancer. I was very alone- the bowel cancer support group was all folks with children and grandchildren. I would really have liked a group for younger patients- or even just to talk to ONE other person diagnosed under age 40. But it didn’t happen.
    In September 2011 I had an art exhibition about my diagnosis and subsequent journey, as a way to celebrate having survived; I was one of the very lucky ones, I have survived ten years. I hadn’t seen or heard of anyone surviving after being diagnosed young because so many young (women especially) are just told they have “irritable bowel syndrome”. I had the exhibition to try to educate the public and also GP’s that young people can get bowel cancer too.
    I think anyone with symptoms (regardless of age) should be offered the “bowel cancer screening” test; if it is positive, they should get scoped…
    Anyone who wants to view my art exhibition can see it (or most of it) online at beyondthebigc.co.uk

  2. Tomoko June 8, 2013 at 5:57 am #

    I’ll right away take hold of your rss as I can not to find your e-mail subscription link or newsletter service. Do you have any? Please permit me understand in order that I could subscribe. Thanks.

  3. Hannah Hodge June 29, 2013 at 7:32 pm #

    Hi Deborah. Thanks for your message to me- I think I’d like a space on your blogspot but not sure how to go about it…

    • deborahalsina October 2, 2013 at 7:50 am #

      Hi Hannah sorry for the slow reply. Do email me: deborah.alsina@bowelcanceruk.org.uk and let me know what you’d like to share.

      • Hannah Hodge October 3, 2013 at 10:37 pm #

        Hi Deborah, I’m 45 years old, was diagnosed with bowel cancer 12 years ago- I’m one of the very lucky young women who has actually survived (so far)- my immune system walled off the tumour 9and attacked my joints in the process….) I had an art exhibition 2 years ago to celebrate my 10 years. I have put it onto a website as a “virtual exhibition” now; thought you might like to see it. The website is beyondthebigc.co.uk

Trackbacks/Pingbacks

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

    […] 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, […]

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