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D-Day

25 Sep
chapada-diamantina-national

The Chapada Diamatina National Park, Brazil

Wow! In just a few hours I’m heading to Heathrow and meeting my trekking group at 3am for our 6am flight.  That’s actually quite scary!   I had naively thought this trek would be a smoother build up than it was for China – that my nerves would be less, that my training would be easier, that I’d manage my long to do list better but actually – a bit like having a second baby – it’s not been easier, just different.

There have been a new set of challenges to tackle these last few months.  I mean who’d have thought my lovely comfortable walking boots would decide to start to hurt for the first time, just five weeks from departure.  Or that after finally realizing there was no remedy that I’d only have two weeks to break in a new pair.  Well that’s certainly upped my trek adrenalin levels but whilst not 100% worn in, the bottom of my toes are no longer blistering so that’s a definite win!

Of course I will be fine – it’s simply a long walk after all.   I will do what I can before I leave and the rest will just have to wait.  The world won’t end if I don’t clear my to do list or if I forget my toothbrush – there are normally solutions.  Everything falls into perspective somehow when you work in and live around cancer.  After a period of relative stability, it’s been a tough few weeks with various patient friends struggling with recurrences, complications, side effects and terrible news that the cancer is now incurable.

That, of course, is why I’m going – to show my solidarity, to take action, to do something practical to try and raise funds for research to improve the early diagnosis of bowel cancer so these tragic experiences stop once and for all.  After all 9 out of 10 people survive bowel cancer if it is diagnosed at its earliest stage but currently only 1 in 10 are diagnosed then.  Far more  – over 60% – are diagnosed when there is at least local spread into the lymphatic system or with a secondary tumour.  That makes treatment so much tougher and the odds significantly worse.  It’s also why Bowel Cancer UK’s new research programme will focus on identifying the highest risk groups and look for better ways of preventing and detecting bowel cancer early.  But this requires money and so that’s why I’m happy to go way out of my comfort zone, control my nerves and fly to Brazil to take on this amazing challenge.

If you are still not sure why you should sponsor me and help Bowel Cancer UK – this blog from lovely Gina Shergold, whose husband Steve was diagnosed at the age of 30 and is now only 33, should explain it better than I ever can.

Gina, Steve and Esmee

Gina, Steve and Esmee

Heartbreak. The Worst One Yet

by Gina Shergold

I’m going to try and keep this one relatively short because I don’t think my brain can handle too much more right now.

The last time I wrote, we were waiting for a CT scan and the for the new trial treatment to start.

For the past 6(ish) weeks, we’ve been going into hospital regularly for blood tests, consent forms and so on to get Steve up and running on the trial, and on Thursday last week he had a physical exam to make sure he was well enough and showing no sign of infection etc, with a view to him starting the trial this week.

On Thursday afternoon, we had a call to say that it turns out the trial had been closed for a while and that Steve could no longer participate. They asked us to come in today to discuss other options.

So today, we went in for a meeting with the oncologist and were hoping he would have news on a different trial.

Instead, he told us that there is currently nothing available, and that we are now dealing with a “terminal illness” – incurable.

We are absolutely devastated, shocked beyond belief and heartbroken.

We also learnt that his spine has got in on the cancer action, and more than likely his liver, too, although that part isn’t confirmed yet.

They will keep looking out for trials, and as soon as one comes up that Steve is eligible for, we will be informed and he’ll be put forward for it (provided he wants to be).

Steve has slept for most of today through sheer exhaustion.

I feel numb to the point where I can’t feel my feet on the ground, but at the same time, I’m  in more pain than I’ve ever experienced in my life.

I don’t really know how I’m still standing at the moment but we both agree that we will not give up, we will keep fighting and live every day to the fullest for our baby girl and for each other.

Sorry it’s a short, blunt and pretty rubbish one, but I wanted to keep everyone updated. I’ll write again when I have more information and/or when my head is feeling a bit less fuzzy.

Gina xx

We have to stop this.  We have to stop the pain and anguish bowel cancer causes.  We have to stop people dying and WE CAN – but we need money to invest in research, to raise awareness, to campaign for best treatment and care across the UK.  We need your help.

This is going to be my last fundraising challenge for a while – as I can feel the fatigue with my endless quest for sponsorship – but if you could sponsor me, just one last time – for Gina, Steve and baby Esmee – for everyone affected by this awful disease, it would be awesome.

You can sponsor me by visiting my justgiving page: www.justgiving.com/deborahalsina4

or simply text: GUTS68 £5/£10 to 70070

Thank you

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

stop bowel cancer banner

Thank you

Laughter and Tears at the 02

23 Jul

Fireworks

*Fanfare of trumpets* We did it!

Today, Michael, Clare and I conquered the 02.  Of course like most things in life it was more scary thinking about it than actually doing it, but even in overcoming our fears of inadequacy there was a challenge.   I’m a firm believer that it is good to be challenged – I’m prepared to push myself outside of my comfort zone and try something new, because I’ve learnt by skydiving and trekking in China that it leads to the best memories and insight into yourself.

CKngEWWXAAA6AKR

Clare, Tony and Michael

02 group pic

We started with inevitable photos – Clare had organised for Town Crier, Tony Appleton, to proclaim our challenge – he looked wonderful in his full regalia but my goodness his bell and cries are loud!  Then we had a short safety briefing – we were all a bit nervous at this stage as they talked about ropes and harnesses, wondering what on earth was ahead.

We then changed into our climb gear including our harnesses (what a look!) and it took me right back to my skydive with wonderful Nikki.

CKngDPAWwAANl9S

Michael and I ready to go

Then we were taught how to use our safety harnesses and away we went.

Funnily enough the first bit is a steep ascent (where you can’t take photos because they want to sell them to you!) and looking up at it, I was transported back to China and actually that made me feel better.  Hey, if I could climb those steps on the Great Wall, I could definitely do this and I remembered that I learnt in China that looking at it was much worse than actually doing it!  In fact, whilst it is steep, it feels a bit like you are walking on a bouncy pillow which is a little weird but it was absolutely fine.

The views from the top were fantastic – it really is a wonderful panorama and thankfully the threatening storm clouds didn’t deliver any rain.o2 panorama

After a steep descent it was all over too soon, so we headed for a late lunch.

Of course much of our talk was about Lynda Bellingham, Michael’s wife, as he remembered all she went through and struggles with his grief, which is still so raw.   I am truly grateful for his support for Bowel Cancer UK – he is genuinely helpful and generous with his time and that is exactly what we need.  Now we need more people like Michael to step up and help us stop this dreadful disease.

We also talked about Clare’s Mother Ann, currently in active treatment for advanced cancer.  Clare’s love for her mother is quite wonderful and I hope my own daughter will feel like that about me too when she is grown.  I’m sure Ann must feel very proud, as she has a beautiful, funny, generous daughter in Clare and we are blessed that she has chosen to support us.  Of course both Michael and I have everything crossed for Ann’s next scan.

For many people challenges like this are a piece of cake but if they aren’t your thing then the challenge is real.  So I feel proud of us.   I have enjoyed  laughter and tears with two wonderful people, started my fundraising and maybe even helped raise some awareness.  A good day.  Now for the next challenge…..

For more information about Bowel Cancer UK, please visit our website.

To sponsor me, please visit www.justgiving.com/deborahalsina4 or TEXT STOP 68 £5/10 to 70070

stop bowel cancer banner

It’s all about people

23 Jul
The 02 Arena

The O2 Arena

I’ve definitely lost the plot this time.  I’m climbing up onto the roof of the 02 arena today.  I mean really – I’m 46 years old and didn’t dream of doing this kind of stuff even when I was 26.  I’m not sure what worries me most – the fact that I get horrifically dizzy looking up (weird) or the dreaded boiler suit (wish I’d started my diet earlier – I know outrageous vanity!).

But how could I not take part, when awesome charity supporter Clare Madden is taking on this challenge to raise funds and awareness because her Mum was recently diagnosed with advanced bowel cancer and our lovely patron Michael Pattemore is also prepared to take on the challenge in memory of his wife, Lynda Bellingham.  Bless them both.

It’s almost exactly six years ago that I became CEO of Bowel Cancer UK and I’m as passionate and committed now to saving lives from bowel cancer as I was then.  It’s been a tumultuous six years – full of amazing highs and some rotten lows but I feel so proud of my colleagues at Bowel Cancer UK because as a team we are doing some brilliant work and we know we are making positive change happen.  But I’m not happy yet.  I want us to do more – I want us to Stop bowel cancer for good.

I started taking on fundraising challenges of my own for two reasons:

  1. I am genuinely moved and humbled by the things people, who are often closely affected by bowel cancer, do to support Bowel Cancer UK and so I feel I must also push myself, go out of my comfort zone and in solidarity join them in raising funds so the charity can have even more impact. So over the next few months I am taking on 3 challenges, climbing the 02 Dome today, a 20k London Bridges Walk in September and another trek from the 26th September – apparently tougher than the Great Wall challenge – this time in Brazil.
  1. Because I am tired of feeling impotent and unable to do enough to stop people dying of this treatable disease. After all since I joined Bowel Cancer UK, seven years ago, around 112,000 people have died because of bowel cancer.  It’s so large a number it’s not quite imaginable but we must…

charlotte kitleyRosi pictueKatie Scarbroughlaura 61512391_10152214610928377_175815830_nMelanieChrisKate-GrossTony Levy

…Because it is all about people including all these dear friends who we have so tragically lost.

Whilst we know that bowel cancer can be cured and early diagnosis is the key, what it more difficult is detecting people early.  Symptoms can be vague, the current screening test too blunt (which is why we must move to Faecal Immunochemical Testing in all 4 UK nations ASAP) and patient and clinical delays lead to poorer outcomes.

We also don’t know enough about who is most at risk – we know about some broad groups – people with known genetic conditions such as HNPCC or Lynch Syndrome or Familial adenomatous polyposis, people with a strong family history or who have had an inflammatory bowel disease (IBD) for over ten years but we don’t know exactly who amongst those groups will develop bowel cancer.

Many people at high risk present young hence why we’ve been talking about them a lot as part of our Never Too Young campaign but it cross cuts age.  If we could get better at identifying people with increased familial risk for example or who with an IBD might develop bowel cancer then we could ensure they are effectively screened so it is prevented or diagnosed early.  It’s research linked to solving big issues like these, that I am fundraising for.  We hope to launch our first grants round in 2016 themed around issues related to Never Too Young. solidarity

However, we need to raise funds to make this happen, so I’m fundraising again.  It would be simply awesome if you could sponsor me or take on a challenge yourself, or hold a coffee morning or just ask your friends to donate.  If we join together and take action, I genuinely believe, in time, we will Stop Bowel Cancer.

And for that hope, today, I will happily don the dreaded boiler suit and harnesses and conquer that dome!

To donate please go to: www.justgiving.com/deborahalsina4 or Text STOP68 £5 / £10 to 70070

stop bowel cancer banner

It’s Time for Guts

18 Aug

TimeForGuts

 

96,000 –  that’s the number of people who have died from bowel cancer since I started working at Bowel Cancer UK six years ago.

Every day on a micro level – amongst the people I know – I witness what that means.  The fear, pain, despair, loneliness, grief it can cause for the patient and their family.  charlotte kitley36 year old Charlotte Kitley’s blog ‘Life as a semi-colon‘ describes all this so movingly.  Here she describes her need for treatment options:

‘In November, we were told my old chemo routine was no longer working, so we would try a new combination of drugs.  In February, we realised these new drugs weren’t working either, and in fact were making me feel worse.  We started my final regime of life-prolonging drugs, which have kept the cancer at bay until the summer.  We now have to accept I have run out of conventional medical options and will be looking to the trials people at the hospital in the hope I qualify for something, anything!’ 

Charley has young children – a family, a life to lead.  This is simply wrong.   It makes me angry and very determined.

It makes me angry because bowel cancer should be a good news story.  Mortality rates have fallen dramatically over the last 20 years – according to Cancer Research UK by over 30%.  How fantastic is that, yet still, 16,000 people continue to die each year of bowel cancer.  I also feel so frustrated because change takes too long.

Yet on the flip side, it strengthens my determination to understand what is going wrong and how we can make positive change so lives can be saved.

As a result, last week, we launched our new campaign around advanced disease called ‘Time for Guts’  because we think it is time there was a  new fresh look at the treatment and care available for patients of all ages.  It will overlap with and compliment our ongoing campaigns, about access to diagnostics, ‘Right Test Right Time’ and about the diagnosis, treatment and care of younger bowel cancer patients called ‘Never Too Young’.

Around 3,800 people are detected with advanced, stage 4, bowel cancer, plus around half of the 9,800 people diagnosed with stage 3 cancer will go on to develop stage 4 and a large proportion of the c. 14,000 un-staged cancers are also likely to have been stage 4.

Advanced bowel cancer is tough in every way.  That first look at your own mortality is hard and then the sinking realisation of what lies ahead.  Extensive surgery or – perhaps worse – none, chemotherapy, possibly radiotherapy depending on tumour site and a terrible sense the odds are stacked against you. Cruelly they can be.

The reality is that in the UK, there are variations in treatment and care leading to people dying needlessly or more quickly.   When it comes to advanced disease, there has been a lot of focus on access to drugs  – and let’s face it, there are some big issues about that – yet the reality is what’s the point of having a drug to shrink your liver tumours, if you can’t access a liver surgeon to remove them?  For example:

  • patients with a liver only metastases are not always being referred to a specialist liver surgeon to determine if their liver is suitable for a resection and instead are simply being put onto a palliative care pathway. Liver resection is crucially important, because it can, in the best case, lead to a cure or at least prolong life.  Studies have shown that in fact around 44% of those patients when reviewed by a liver surgeon COULD have been resected.
  • Even in areas where people are referred there are huge variations in five year survival, with rates ranging from 25 per cent to 44 per cent.

With variation such as this, it’s not really surprising that the UK performs poorly on survival from advanced bowel cancer.   A recent analysis of survival by stage between six high-income countries found that one-year survival rates among UK bowel cancer patients diagnosed at the earliest stage of disease (Stage 1) were similar to those in the other five countries (96 per cent, compared to 92-98 per cent elsewhere), but survival in the UK was consistently lower for those diagnosed at an advanced stage (7-16 per cent lower than elsewhere).

holistic care

Holistic Care

We want to look at advanced disease holistically.  We plan to look at the whole person and their treatment and care, not just one aspect of it and consider what gaps there are for them and their families, for example around psycho social support.  We know that there are few quick fixes, but with so many people dying needlessly we believe it really is time for a concentrated look at advanced disease – that it is Time for Guts.

 

IHaveGuts

Of course all this needs funding, so we have also launched a fundraising campaign to ask people to help us.  I will be taking part too.   Having settled on a trek, I asked some of my dear friends with advanced bowel cancer which one I should do and the consensus was The Great Wall of China trek – so I’ve signed up!  I go on October 9th and will ‘enjoy’ my first day of trekking on my birthday October 11th!

I admit to being excited and scared all at once.  After all I commute (5 hours a day), I don’t trek!  But the bottom line is I am so very lucky that I have the health to even attempt this.  So many of my dear friends, with advanced disease, have commented that they would love to go to China with me but are just too unwell.

So this is for Gail, Rita, Sean, Mark, Charlotte, Sian, Julie, Kate, Sarah and so many others facing their fears and having their resilience tested to the extreme by enduring so much treatment.

We need you 2If you have been affected by advanced bowel cancer – either as a patient or family member – I would ask you to help us because I know you will understand why this is so vitally important.  As Mahatma Ghandi said: “Strength does not come from physical capacity it comes from an indomitable will” and I firmly believe that it is only through our collective strength and determination that we can make real change, so please join me and take action today and help us to save lives from bowel cancer.

Please:

  1. Share your or your loved one’s story
  2. Take part in your own challenge or simply donate – why not become a LifeSaver’?

or

  1. sponsor me and encourage everyone you know to do the same. I’ve covered all the costs of the trek myself so all donations will go directly to Bowel Cancer UK.   www.justgiving.com/DeborahAlsina1

Thank you.

 

Star of Hope, the international symbol for bowel cancer

Richard Branson and kissing frogs

2 Oct

Image

“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

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.

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

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