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A New Year Beckons

31 Dec

Image result for New beginnings

New Years Eve for me is somehow full of both a touch of sorrow at the reminder of how quickly time passes and full of hope for the fresh beginning the New Year offers.  It’s also a time of reflection and when I look back at 2017, it’s not the endless meetings I’ve attended, places I’ve visited, awards I’ve won or reports I’ve read, but people that come to mind  and some extraordinary acts of generosity and inspirational selflessness.

Jennifer WarrenPeople like Jennifer Warren who died on the 6th December aged just 34.  Her brother contacted me after her death to let me know that ‘She left express instructions that she was happy for Bowel Cancer UK to use her story for the purpose of publicizing the charity’s aims and in particular for the purpose of raising awareness among the young.  She also requested that Bowel Cancer UK should derive some benefit from her funeral donations and hoped in particular that this might be able to be put towards campaigns related to the young, such as #Never2Young.’

Jennifer, like so many other young bowel cancer patients, experienced a delayed diagnosis and so when she was eventually diagnosed it was already at stage 4. She had only just got married and was looking forward to starting a family.

Her blog www.bodyassindex.com all too clearly documents the delight that was her and the awfulness that was her treatment.

Another woman aged 49, who wants to remain anonymous currently, contacted me in October to tell me that she hadn’t been given long to live and to apologise that she wouldn’t be able to help Bowel Cancer UK in the way she had wanted.  She had planned to become an awareness volunteer and to share her story to help ensure others do not have to endure all she is.   Instead she pledged a £5,000 legacy to the charity on her death, which she had been informed would be in early 2018, to make up for her lack of volunteering support.

33 year old father of three, Sam Gould’s reaction to his stage 4 diagnosis in April was to make a film to help raise awareness of the disease.  In those short final months of his life, Sam could not do enough to support Bowel Cancer UK using all his campaigning skill and zeal to publicise and raise funds for our Never Too Young campaign.  His family and friends continue to support us which means so much to us all.  Sam Gould

It is these three remarkable people, and many others, I think about when I reflect on 2017.  Their ability to consider and care about other people at the darkest moments of their own lives is I think inspirational and extraordinarily moving.

Of course New Year’s Eve also makes you look forward to new beginnings and this one feels particularly significant for me.  On 01.01.2018 Bowel Cancer UK and Beating Bowel Cancer will be formally merged as one charity and I’m excited for the possibility that creates.

Both charities achieve a great deal separately but we firmly believe that together we can achieve more.  Together we are determined to save lives, improve the quality of life and provide support to everyone affected by bowel cancer.   We will achieve this through an ambitious programme of research, support services, education and campaigns.

I know 2018 will bring its fair share of challenges and frustrations for our new charity but with another 41,000 people currently unaware that 2018 will be defined for them by a bowel cancer diagnosis, the stakes are high.

For them and for all those who have placed their trust and belief in us, we will not fail.  Of course we can’t #STOPbowelcancer alone – we need people to be actively with us – could you make that your unbreakable New Year’s resolution?  Mine is clear, I am going to give this my all.   I’m going to breathe through the frustrations, calmly problem solve my way through the challenges and keep my sights strategically fixed on improving outcomes, so that one day we can look forward to a day when no one dies of bowel cancer.   I’m ready 2018.

Happy New Year, may it be full of hope, health and happiness.

The Star of Hope

 

For more information about bowel cancer visit www.bowelcanceruk.org.uk or www.beatingbowelcancer.org

To speak to a nurse call: 020 8973 0011

Or visit our Online Forum

 

 

 

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.

Richard Branson and kissing frogs

2 Oct

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“Hello, I’ve have had some very bad news. On Monday I was told by my consultant that not only has the cancer returned its spread to my pelvis and there isn’t a lot more they can do for me, therefore I am now terminal” Michael, 54, bowel cancer patient

“I had a meeting and scan on Friday.  Not good news major spread in the liver and other places. We agreed no more chemo.  It looks like it’s taking hold now” Tony, 50, bowel cancer patient

I really hate bowel cancer.  During my first few days back at work after my long summer break I caught up with my patient friends. Three recurrences, one told now inoperable, one with just a week or two left, three with spread, several with severe reactions to chemo.  Desperation, despair, occasionally acceptance. Bugger.

What makes this harder is that really bowel cancer should be a good news story. It is one of the most treatable forms of cancer.  If it is diagnosed at its earliest stage you have a 93% chance of surviving.  However that can be difficult to achieve for a host of reasons including:

  • low levels of awareness leading to patient delays in seeking advice;
  • GP delays in referring for diagnostic tests because it can be difficult to identify who to refer;
  • low take up of screening and the need for a more sensitive (and easier) screening test:
  • poor surveillance programmes for those at highest risk.

At Bowel Cancer UK we are working flat out to address some of those issues – we run awareness programmes, we train public health and health care professionals, we promote screening, we campaign where we see issues that should be addressed, we provide information and support to people affected by the disease. At the same time we are carefully monitoring and evaluating what we do so we can do it better and share our learning with others. Yet we are still hampered by our lack of scale.

Sir Richard Branson

The need to grow the charity has led to my developing a mild obsession with transformation, change and money!  I’ve started to study the habits of wealthy entrepreuneurs and successful businesses to try and figure out how they made the breakthrough that led them to success, money, influence. I’ve felt vaguely re-assured by the hard graft so many describe prior to take off but I can’t help but wonder what Richard Branson would do if he were CEO of Bowel Cancer UK?

Don’t get me wrong, it is a pretty healthy obsession because all I want is to enable Bowel Cancer UK to do more, for more people. Yet after 22 years working in the voluntary sector I’ve come to realise that money is the charity workers curse.    We don’t have gadgets and gizmos to sell (usually), we only have our issue.   I’m selling an opportunity to be part of saving lives.  Sometimes I’m gobsmacked that it’s such a tough pitch, that so few seem to want to buy into it.

Bowel disease study day

It’s particularly frustrating when we know that there is a real need for what we do – the patients and their families I speak to every day are a constant reminder of that.  I also know that our work makes a tangible difference. For example the independent evaluation of our recent pilot GP study disease days in Birmingham and Manchester commissioned by Cancer Research UK showed that 92% of the GPs attending intend to make positive changes to their clinical practice as a result.  That’s good news as we wanted to support GPs and provide them with the opportunity to consider their practice and to make changes where needed.  Yet we struggle to find the funds to run them.

In our joint Train the Trainer programme with Breast Cancer Care we trained around 100 health care professionals in areas with high incidence and mortality of the disease and the evaluation was fantastic.  It showed that trainees knowledge about and confidence to share information /raise awareness was dramatically increased and as a result they went on to reach over 10,000 people and that number continues to grow.  Clearly this is positive yet the fundraising process to get the necessary funds to run them is long and arduous and there is no guarantee of success.

Never Too Young banner

We are having influence too.  We have worked hard to ensure there is depth and substance behind our Never Too Young policy recommendations and are fortunate to have the support of leading academics and clinicians.  Yet to turn those recommendations into practice requires money to fund the necessary research.  Bids of course have been duly written and submitted and now the agonising wait begins. What a waste of time.   After all, people are dying and this might help change that.

Most days (and too many nights!) I wrack my brain to try and work out what we need to do differently and I am always on the look-out for ideas and open to advice and guidance.  Of course it’s in the wee hours of the night, the self-doubt and self criticism bites and there are times when I long to run away and work in a Cotswold tea room.  When I dream of clarity and simple transactions… you want coffee…here it is.

Yet I just need to think about patients and their families and the impact of losing someone you love and my own feebleness melts away.

My friend Neil, who lost his wife Lindsey to bowel cancer, described it to me so movingly.

‘The whole journey of losing a partner and best friend is very odd. At first the shock protects you a little.

Then you throw yourself into work with unbelievable mania just to avoid thinking about it.

Only now 10 months on has reality kicked in. The loneliness is awful, the sense of there being no purpose to anything any more is high

I am sure this is all part of the process but it is such a painful part

But I am ok – really I am’

I feel such anger that people are going through this and I am bored rigid by steady incremental growth. We need step change.

What makes it feel more urgent is that in my re-networking of the new NHS in England it appears that many politicians and key decision makers in the new organisations have moved on or at least distanced themselves from cancer, as their budgets have shrunk and their portfolios expanded except for where there are big headlines.  Yet many of the changes required are not news grabbers.  For example, increasing endoscopy capacity isn’t really media sexy but it might enable us to detect people quicker when treatment is more successful, yet who is prioritizing that?   Well we are.

Today around 43 people died of bowel cancer and tomorrow another 43 will die and the reality is that many of those deaths could have been prevented.  That’s why money and transformation is so important – to ensure we can dig deep and find meaningful sustainable solutions.  This is definitely not the moment to move on and give up.

Oh dear, I guess the tea room will have to wait and I will just have to keep hunting for that breakthrough moment and ‘kissing frogs’  just in case one turns into a generous benefactor.

I also better finally settle on a new fundraising challenge – it isn’t the solution, but right now every penny helps.

Star of hope

“Never doubt that a small group of thoughtful, concerned citizens can change the world.  Indeed it is the only thing that ever has”

Margaret Mead

If you would like to donate to Bowel Cancer UK you can do so online via our website  www.bowelcanceruk.org.uk or visit my Never Too Young  JustGiving page: www.justgiving.com/deborah-alsina

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 y bowel cancer

The challenge of caring

9 Jul

This blog was supposed to be all about my fundraising for younger bowel cancer patients and the reasons why I’ve embarked on the challenge – but I’d rather like to morph it a bit.  I plan now to interweave some posts on other topics as they grab my attention, in-between posts on Bowel Cancer UK‘s Never Too Young campaign and my own attempts at fundraising so here goes….

“Too often we underestimate the power of a touch, a smile, a kind word, a
listening ear, an honest compliment, or the smallest act of caring, all
of which have the potential to turn a life around.”

Leo Buscaglia

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Recently I became aware of this wonderful painting by Goya ‘Self Portrait with Dr. Arrieta’ painted in 1820.  Apparently in his early 70s, Goya was very unwell but was so impressed by the care of his doctor that he painted it in thanks.  How wonderful!

I too am frequently blown away by the amazing high quality care and dedication shown by many wonderful doctors and nursing staff in the UK and I am so grateful for them.  Yet I am also regularly inspired by many unsung heroes – unpaid carers – who should also be acknowledged and celebrated.  Unpaid carers are frequently family members and friends who often suddenly and unexpectedly find themselves in a care role when a loved one becomes unwell.   This unwelcome change of life can be so hard financially, emotionally and physically.

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A recent research report entitled ‘Prepared to Care?’ launched during Carers Week in June highlighted that carers are being woefully let down by a lack of support when they first take on a caring role. The statistics are shocking:

75% were unprepared for caring role

81% said they were not aware of the support available

61% of carers have experienced depression

92% of carers say they feel more stressed because of their caring role

35% believe they were given the wrong advice about the support on offer

According to the Carers Trust  and Carers UK there are around 6.5 million carers in the UK and 6,000 people taking on a new caring role every day.   It really concerns me that they are not getting the information and support that they need.  I regularly talk to the families of bowel cancer patients and the strain is often palpable.   It has made me wonder if the lack of support and information is because there is a lack of understanding about what they do or how a loved ones health condition can impact adversely on them.    Of course the focus must be on the patient yet I don’t believe this should be an either/or – carers also need support to enable them to provide care and to maintain their own health and wellbeing.

During Carer’s Week in June I was fortunate to be invited to share my experiences as a ‘carer’ at Leukaemia Care‘s regional conference.  Of course my experience was of simply providing emotional support, rather than intensive physical care.  Yet as I prepared my speech (posted below) I was surprised to realise that the emotions remained so fresh and raw even though it is 10 years since his diagnosis.

I see my own experiences repeated in the families of bowel cancer patients I’m in touch with.  Of course many people have a much tougher time than me, but I think my personal insight gives me an ability to recognise the issues and empathise.   Through my job at Bowel Cancer UK I regularly witness the strain and terrible fear experienced by family members. I see the tears of worry and sometimes grief and feel the emotional strain it causes.

Surely we must all recognise this and ensure that ‘Carers’ vital role in health and social care is acknowledged and that they have access to information and support they need – including respite care where necessary.  I am convinced that apart from just not being good enough, if we don’t act and instead continue to neglect them then we risk creating a far greater health problem for us to tackle.

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Speech for Leukaemia Care’s Regional Patient Conference in Worcester June 2013

I met my husband Rogelio (or Ro for short) just over 11 years ago.  It had been a hard few years – I’d recently got divorced from my husband of 10 years and was trying to keep everything stable, balanced and happy for my two little boys, Robert and Alex who were then 4 & 6.

Rogelio arrived like a knight on a white charger and brought sunshine and laughter back into my life.  He was brilliant with my boys with endless patience and energy to play football or have water fights.  He could even do magic tricks much to the boys delight.   He was sunny, friendly, positive and I think what I liked about him the most was that he always went the extra mile for people – for us. 

We bought a new house together – I left full time employment to become a self employed consultant so I could balance my life better and spend more time with the boys.  We planned to get married and hoped to have a baby of our own together.    The future looked so wonderfully bright. 

Yet in the first part of 2003 Rogelio started to get tired easily and his legs would ache terribly.  He also started losing weight.  I persuaded him to go to our GP.  It was a disaster – he was sent away and told to get fitter. Ro felt totally humiliated. I was furious.  He was a very fit, active man so the GPs response was silly.  But we decided it meant it couldn’t be anything serious and moved on.

Just before we got married he developed a terrible cough.  Our lodger suggested something really serious could be wrong.  I didn’t want to hear it. I was actually quite angry because I felt he’d worry Ro – surely he was just tired, run down, had a bug. Maybe he needed antibiotics.  He didnt want to go to the doctor and we agreed he’d go after our wedding and honeymoon in Edinburgh if it hadn’t cleared up.

By the time we were married on 4th July 2003 he’d lost a couple of stone in weight.  To my eternal shame I didn’t see how dreadful he looked yet today I can’t bear to see the photos of him as he was ridiculously thin.  But life was busy – with the new house, new job, wedding and baby plans.  I was also simply naive.

It was when we were in Edinburgh for our honeymoon that I knew he really wasn’t well…but still I just thought it was a bug.  Cancer had absolutely no resonance in my life – it happened to other people.

Whilst we were away he was very low in energy – really tired, had a very distended upper part of his tummy (I had no idea that was his spleen!).  His cough also hadn’t gone away.

When we came back he went straight to the doctor who referred him, thankfully, for blood tests.  We were having a wedding party on the Saturday at home so decided to stop at the local hospital on the Friday to get his bloods done and then go and buy all the food for the party and start preparing.  As we arrived home the phone rang, it was the hospital calling us back in and they told us to pick up a letter from our GP first.  The letter was to hospital admissions… Wow now we were really worried.

He was admitted and we sat around for 2-3 hours with confirmed diagnosis on his notes waiting to see a consultant to know what he had.  Late afternoon the consultant came round and two weeks to the day after our wedding, he broke the news that my darling love had chronic myeloid leukaemia.  

It was quite simply appalling.  If normal white blood counts are between 4 and 12, his was 344 off the Richter scale.  We asked if it could be treated or whether he was going to die? There was my strong positive husband sobbing and scared.  He stayed in hospital overnight and I went home to cancel our wedding party.  He started chemotherapy that day instead. He was 42 and I was 34.  I’ve often felt that July 19th 2003 was the day I really grew up and lost my innocence.  

Over the next few weeks, everything crumbled – I had an early miscarriage, all our hopes evaporated and for a while we lost our ability to dream.  No baby, possibly no husband, no future.. What would I tell the boys?  Rogelio was the patient yet my life felt destroyed too because my hope for my life was to share it with him.  

It felt so damn unfair.  I did all the why us, why me thing and wallowed in grief and self-pity.  We cried a lot in those early weeks and read a lot – much of which scared us even more, yet we felt that in information and understanding there must be power.  We also agreed we were going to be each others support and that we were going to talk about it. That meant sometimes Ro needed to comfort me but in that way we found our strength.

He started his treatment at Farnborough hospital in Bromley and we were so grateful for the kindness of the consultant and an amazing specialist nurse called Ali.  After a few months he was transferred to Kings College Hospital who were running a trial for a new drug Glivec which was having good results.  

But Kings was a shock – the queues, the waits, the number of people, the lack of continuity of care.  An appointment took up almost a whole day.  I found it very difficult to feel so out of control, probably even more so than Rogelio.  This was my husband’s life and I was expected to trust them with it.  I struggled with that.

Slowly I realised what my role was.  Of course to love and support Rogelio but also to be his advocate.  Because English isn’t his first language (it’s Spanish) whilst even back then it was excellent, he found it more difficult to express himself in the stressful straining hospital situation.  So we talked each visit through – considering what we needed to ask beforehand and what we’d understood afterwards.  I attended pretty much every appointment with him for the first 5/6 years until things calmed.  That was a key learning point about how important it is to take someone with you to key appointments – to think your questions through beforehand and to take notes of results because you won’t remember or get to ask those burning questions if you leave it to chance. The emotion of it all is too powerful.

I’ve also held his hand and re-assured him through endless awful bone marrow biopsies and discovered the pain level varies with who is doing it.  It’s been my role to remind the registrar to give him more anaesthetic before they take the bone out.

In the Autumn just a few months after his diagnosis I became pregnant.  That felt significant – yah… we’d begun to dream again.    We were so happy but also concerned.  We asked for a referral to the Harris Birthright centre for indepth antenatal scans as we were worried about the impact of the chemo and then glivec on the baby as no research had then been done.

In fact there was one particularly horrendous week when we were getting the first results which would tell us if the glivec was working and our first scan.    We were feeling stressed and frightened when we had Ro’s appointment with the registrar.  This was the day, or so it felt, that we would hear if he was going to live.  The registrar didnt know anything about us, hadn’t read the file, hadn’t got the results – was simply totally unprepared.  He called for the results in front of us and just said yes they seem fine. Ok?

We were shocked, I could see Ro’s ashen face and I knew I had to say something.  So as calmly as I could (bearing in mind my pregnancy hormones) I explained that no it wasn’t ok he was unprepared, and no it wasn’t ok that he hadn’t explained the results and that we realised he was busy and this was his job but this was our life.    His response was great actually as he apologised profusely and admitted he had got it wrong.  He eventually became one of our favourite registrars!  I think that’s a key learning point – sometimes it just isn’t ok and to ask questions and to expect answers you can understand is important.  The really good clinicians are absolutely fine with that. 

The baby scan was next – such wonderful news we were having a baby girl and she looked fine.  After six long months we were headed in the right direction.  

During Rogelio’s treatment we have learnt a lot.  We dont have clinical training but we have needed to understand because we realised we are paying much more attention to his care than anyone else.  Listening, taking notes, googling to understand is vital.  There was one period that this became particularly important.  We suddenly realised there was no case work supervision at Kings back then.  One registrar would contradict another and the Head of the Department would take an entirely different course of action to his staff.

18 months /2years or so into Rogelio’s treatment his results weren’t as good as they should have been. We’d been told to expect a significant reduction in his white blood count yet it had slowed dramatically.  The registrar said it was fine and just to continue.  We were surprised.  By random chance Ro’s next appointment was with the Professor, the head of the department – he commented the results weren’t right, gave him a 2 week glivec holiday and upped the dose to 800mg from 600mg.  This made sense to us.  I asked the registrar at our next appointment about it and how clinical decisions were made – and discovered they only referred back if they were unsure and she was honest enough to say she wouldn’t have considered the Prof’s approach.  As the appointment ended I asked her to check what she had told us to do with the Prof to ensure he agreed with the course of action.  Good to her word she did and called me a little later to tell me that no he didn’t agree and he wanted to do something different.  The point was made and it just wasn’t good enough.

From then on I insisted Rogelio see the consultant at every appointment to ensure expertise and consistency of care but also felt honour bound to feedback that the process needed to change.    I hope that my feedback, along with I’m sure many other people’s, contributed to a new casework supervision process being put into place.  They now review Ro’s case and pick him out to see the consultant if there is anything of concern.  Hurrah.

Cure is not an option for Ro.  A bone marrow transplant is too high risk due to his age and lack of a full sibling donor so we need the drugs to work.  Even the very highest dose of glivec never pushed him into a full remission – close but not quite.  Then after about 5 years on the drug he started to develop a resistance… We were back on the roller coaster.  Thankfully in the intervening years there was another drug he could take – dasatinib – he’s now been on that one with minimal side effects for around 4 years or so and just recently, nearly 10 years after diagnosis he had his very first results which said the cancer was undetectable.  How amazing is that!  We need another couple of results now to prove its not a blip but even after all this time, it gave us such joy and hope.

Cancer has affected every aspect of my life – perhaps bizarrely even more profoundly than Rogelio’s. 

For example, our beautiful little girl Gabriella Anne was born on 11th August 2004 by Caesarian section.  Cancer had a part to play in that.  I had a minor infection around her due date and there was a slight risk it could harm her.  As Rogelio had only been diagnosed just a year before it just didn’t feel remote or unlikely another terrible thing could happen so I opted for a C section which would, I thought, guarantee she was ok.  When we discovered more recently that she has learning difficulties – she is dyslexic, dyspraxic and dyscalculic – my first thought was that perhaps it was our fault.  That Ro had still been too ill when we conceived her, that the drugs had affected her.  Of course it’s silly and pointless to wonder as we will never know.  Yet I have grieved again for the easy life I wanted her to have – perhaps more than I might have – because she was, after all, our miracle baby.  Our hope in our darkest times and again I’ve played the victim and cried for the injustice of it all.

Funnily cancer has helped me though.  Through cancer I’ve learnt about victims and survivors and chosen to be a survivor where I’ve used the knowledge I’ve unfortunately gained to benefit others.  I’m still on that journey for Gabriella.

When Ro was diagnosed I was working in international human rights and development and hoped to live and work overseas.  Now Rogelio’s drugs are paid for by what was our local Primary Care Trust now Clinical Commissioning Group we can’t leave the UK.  So after my father developed and sadly died from bowel cancer, 4 years after Rogelio’s diagnosis I decided to change direction and do something positive with my newly acquired knowledge.  I’ve now worked for Bowel Cancer UK for 5 years and been Chief Executive for four.  I love it and am incredibly passionate about what I do because I get it… I may not have been a cancer patient but I’ve been through the journey. It’s affected my life and sometimes my health and well being profoundly without anyone really noticing or offering support and that’s ok I’ve found the positives.

For me they are:

1. I love cancer drugs for Chronic Myeloid Leukaemia (and I’d like something similarly amazing for bowel cancer) because my husband is alive – not cured – but here with a great quality of life.

2. I have a job I love and I have the opportunity to work with amazing people.  Through Rogelio’s treatment and my work I’ve met some inspirational pioneering clinicians and thank goodness for them – including the fantastic specialist nurses who make such a difference to people’s well being.  We need more of them.

3. I know very clearly what charities like Leukaemia Care and Bowel Cancer UK should be doing.  My husband was lucky he had a gobby wife to fight his corner – to be his personal advocate.  Not everyone has that or feels comfortable.  Our charities need to be that voice – to lobby for the best care for everyone irrespective of postcode and to hold NHS, private providers and the Department of Health to account if it is not in place.

4. Best of all I’ve learnt a lot about me including about my strengths and weaknesses.  I’ve learnt that I can choose who I am – it’s not easy… But I have become a determined survivor and always look for the positives even out of the darkest situations. 

Thank you

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

Gravity, fear and friendship

22 Apr

in the air‘I want to fly like an eagle
To the sea
Fly like an eagle
Let my spirit carry me
I want to fly like an eagle
Till I’m free
Oh, Lord, through the revolution’
Steve Miller, Fly Like an Eagle

in the air 2in air 3 

with canopy IMG_2937     coming in to landlandingOMG .. we really did it!  Niki and I threw ourselves out of a plane and found friendship. I am counting my blessings that Niki stepped up to my twitter cry for help and offered to skydive with me. With the benefit of hindsight I don’t know how I’d have managed without her.

Niki and Dave

Niki and Dave

What can I tell you about Niki? Well clearly she’s amazing.  One of the warmest, bubbliest and most lovely people I’ve ever met.  She has done a series of fundraising challenges, including running the Edinburgh marathon and trekking the Great Wall of China to raise money for Bowel Cancer UK.  She started this after her friend James died of bowel cancer aged 28.  Her remarkable support is a moving reminder that cancer affects more than just the patient.  Having met on twitter (you can find her @nikinom) a year earlier, I felt instantly blessed to have her and her boyfriend Dave with me along with my husband and daughter. What made it easy was that she understood and shared my motivation to take action.  We also shared misgivings about what we were embarking upon.

The whole skydiving experience was incredibly emotional right from the outset.  It was a perfect beautiful sunny day but I was reduced to tears by messages of support from patients 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 determined.

We can do this!

We CAN do this!

Niki and I met at the airfield which was in a beautiful countryside location just outside Swindon.  We signed all the relevant disclaimer forms and then waited until we were called for training!   The training was brief but we chuckled our way through it, lying on your tummy in a field practising free fall positions is a bit random after all.

Practising my free fall position with Matt

Practising my free fall position with Matt

Niki looking glam!

Niki looking glam!

We laughed as we struggled into our ‘boiler’ suits and at our deeply unflattering hats and eventually just held hands as we climbed to 10,000 feet in a plane that felt too small to be in the air.

Quite frankly everything felt wrong… being in a plane with 5 blokes (the pilot, two tandem partners and two cameramen) telling unrepeatable jokes full of sexual innuendo whilst strapped to one of them and eventually sitting on their knee, with another resting in-between our knees was certainly ‘cosy’.  Add that we were preparing to jump out of a perfectly (well reasonably) good plane as well, then it definitely felt counter-intuitive to all we had learnt about safety during our lifetimes!   Yet my tandem partners repeated checking of my harness and calm words about what was going to happen next were oh so welcome.  As we climbed higher and higher so did the butterflies in my stomach…  Deep breath, tightly hold Niki’s hand and put on presentation face… I can do this, I CAN do this….

Niki jumped first – seeing her terror and hearing her fearful cry of ‘this is so scary’ as she dangled on the edge of the plane in free fall position and then a scream as she fell (was pushed) was mortifying and then it was my turn…. We jumped from 10,000 feet, that’s two miles up – yikes!  You free fall for the first 5,000 feet at 120 miles an hour.  The first few seconds of the free fall were quite frankly horrific to a non-adrenalin junkie wimp like me. The speed and spinning until the instructor gets it all under control was way way outside of my comfort zone.  Actually, for a few seconds I literally felt total panic, but then gave myself a stern talking to and determinedly opened my eyes and controlled my fear.  After all, people had kept telling me, I was going to love it – the least I could do was try.  But most importantly I was doing this for a reason.  I didn’t want to let everyone cheering me on across the twitter waves and my colleagues down.

I suddenly remembered the cameraman and tried to look at the views and smile as if this was what I did all the time. Trust me, it’s tough to smile at those speeds with your cheeks flapping attractively! Then, suddenly, a big jolt and the parachute is open pulling you upwards… unexpected serious feelings of nausea ensued but I controlled it and realised how wonderful it felt that we had slowed so much.  Finally it felt under control. The quiet under the parachute canopy is amazing after the loud noise of the wind at 120 miles per hour and the views were clear and spectacular over beautiful countryside.  If I hadn’t felt nauseous at every turn it would probably even have been enjoyable… It was most certainly awesome.

Never Too Young bowel cancer patients

Never Too Young bowel cancer patients

As we ‘floated’ down from 5,000 feet I talked to my instructor about why I was doing it. I told him about Laura and Lesley all the other young patients and their families I know and care about. I told him that even though this absolutely wasn’t my thing I was proud to be facing my fears and doing something.  That I hoped by taking action and raising funds I could make a difference.  I told him how the stories of loss and grief hurt and how moved and humbled I felt by all the support I’d received.  So many people I care about were on that jump with me.   Poor bloke – he was probably expecting small talk about the view and I’m telling him about death, late diagnosis, grief and why it has to stop.  It’s silly but it makes me well up just thinking about it because as I looked out over the beautiful countryside repressing my fear, I wasn’t alone.

Landing is remarkably controlled but I still felt alarmed as the ground got closer and closer and I couldn’t get my legs up – my face in the pics is comical, my anxiety clear for all to see!

Yah! I did it.

Yah! I did it.

Even though I jumped second we were down first and then I had to wait for Niki.  Bless her she was white as a sheet and I felt terrible guilt having persuaded her to sign up.

Relief...

Relief…

I think it’s fair to say we both felt rather emotional, shell shocked and in disbelief about what we had just done.

Did we really just do that?

Did we really just do that?

As we watched someone else land we realised we’d just done something pretty darn amazing… entirely foolish but amazing…

I so want to tell you I loved every minute of skydiving – I feel a bit of a failure that I didn’t. It was genuinely an amazing experience which will always stay with me, but I can’t claim to have ‘enjoyed’ it in a traditional sense of enjoyment.  However as well as the wonderful donations for Bowel Cancer UK, I have gained a lot.  I have a lovely new friend in Niki and a deep sense of pride that together we faced our fears, held our nerves and took action for younger bowel cancer patients.

Neither Niki nor I longed to go up and do it again straight away as we were told we might, yet I would absolutely do it again in a heartbeat if it would make a real difference and help save lives.

Niki & Deborah

PS

Thank you to everyone who has sponsored me… If you haven’t don’t worry you still can!  Justgiving.com/Deborah-Alsina

If you are  new to my blog and would like to find out why I’m taking action by fundraising for younger bowel cancer patients, do visit Bowel Cancer UK’s Never Too Young campaign website pages or simply read the posts in my blog archives.

Heart aches, inspiration and fundraising

28 Jan

Image

“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.

Image

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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