The Ripple Effect...........One small change can have an ENOURMOUS effect

As many of you will know I have spent the last few years doing what I can to raise awareness for bowel cancer and IBD's. But whilst talking to someone at a recent charity event I realised I've referred to BBC a lot but have never really highlighted all the hard work that they do. Time to fix that....

As April is Bowel Cancer awareness month it seems appropriate :)

Their vision is a world where bowel cancer is beaten. Beating Bowel Cancer is the support and campaigning charity for everyone affected by bowel cancer.

They bring people with bowel cancer together to share experiences and create a powerful voice for change.

• promoting early diagnosis of bowel cancer
• campaigning for the highest quality treatment and care for bowel cancer patients
• raising money to fund our vital work

Each year Beating Bowel Cancer
-          distributes over 120,000 information booklets to help patients and their families understand more about bowel cancer and to support them in making vital decisions

-          Their nurse helpline receives over 3,300 contacts from people needing support

-          780,000 people visit the Beating Bowel Cancer website to find out about symptoms and get vital information about the condition

Key facts and statistics about bowel cancer
• Every half an hour someone dies of the disease
• Each year around 16,000 people die of bowel cancer
• Bowel cancer is the fourth most common cancer in the UK
• Around 110 people are diagnosed with bowel cancer every day, that’s someone every 15 minutes
• Bowel cancer affects both men and women
 
• Your lifetime risk of developing bowel cancer is 1 in 16.

Reading the statistics above hopefully now you can see why I never feel like I can do enough.

My hope is my humble ramblings create a small ripple of awareness which may in turn create someone else to create a ripple.

I hope they do......so Ill keep rambling ;)

March 16th

March 16th will always be a very memorable date in my calendar.

This was the date of my operation to remove the cancerous tumour and create my Stoma.  People have referred to this a lifesaving operation.  In some ways I suppose it was (although to be honest referring to this as 'life saving' does seem a bit dramatic!)  Either way it was the date that my life changed.

I’m not sure I have written a post with some additional details from this day.  On reflection it wasn't the most  straight forward of procedures.  If you know me, or have read these blogs that shouldn’t be a surprise :)

As I write this blog a strange visual flashback has popped up!  Just before I was wheeled down for my op the stoma nurses came by to 'draw' on where my stoma was to be located.  Strangely when this was drawn on my right side it came as a bit of a shock.  I’d gotten it into my head it would be on my left side.  Weird now how this insignificant detail bothered me?

The time came and I was wheeled into the theatre.  Due to the nature of the operations I was due to have an epidural.  This didnt quite go according to plan.  After multiple attempts they decided to sedate me and deal with this later.

My operation was due to last 3-4 hours.  Obviously at the time I wasn’t aware but due to some complications (fiscals in my bowel) the op took ALOT longer. Nearer 8 I believe!  I can only imagine how distressing this must’ve been for my wife and family.  Expecting me to return to the ward but each time they check being told I hadn’t been brought back yet and with no update!

Due to these complications an unscheduled incision was required.  Simple enough in itself, however, this additional incision was made above the point of the epidural pain relief. Meaning that all I recall when I awake was searing pain!

After some unexpected time in the recovery room and some drugs ;) I returned to my ward.  I don’t recall much as the morphine I was on really made you slip in and out of consciousness.  I do recall my step dad wanting to take a picture?  Memories are wierd things.

Unfortunatley this wasn’t the end of the challenges.  A day later during the numerous test as and checks they found my blood count was too low.  Now apparently they normally don’t like to do blood transfusions over night, in true smith style my transfer was an emergency they need to get the blood in quick.  

I recall about 3 pints being required.  As they were trying to get this into me fairly quickly I also recall my arm swelled fairly substantially.  A very bizarre sensation!

I finally started to recover from the op and my real recovery began!

Now if you read all of the above, you could assume that I look back at March 16th with a heavy heart. Focusing on the negative aspects of my operation. What it ’took’ away from me.

March 16th has become a day where I reflect on what my operation has given me..........

strange right ;)

To Declare or not to declare....that is THE question!

I do not travel much but recently I have had to travel to Europe for business.  It was on a recent trip whilst travelling through airport security that I became aware of a very unique Ostomy question. 

To declare I have a stoma or not declare?

Let me explain how this question arose:

 On the outbound journey I decided to treat my wife to a new bottle of perfume (I know nice aren’t I.)  It wasn’t until the return journey that I realized this may have been a mistake.  I had purchased the 120ml bottle of perfume after I had passed through security at Stanstead.  On my return in Belfast I now had to take my expensive 125ml bottle of perfume through the 100ml outbound security limit!  Fortunately (although probably not a good thing) the perfume was not flagged as an issue when scanned, however, I was!

Even after taking off my belt & shoes I had still failed the metal detector.  In Belfast they seem to of upgraded from the normal ‘pat down’ to a new electronic system.  You basically stand in a pod and the scanner makes a 360 degree sweep around you (see image below).  It then by the magic of technology displays any areas of ‘interest’.  I assume abnormalities/lumps bumps from what it has been programmed to think the ‘average’ human body looks like when scanned.  

You can probably now see the reason for my original question.  The machine had flagged my stoma site as ‘an area of interest’  I was then called over to be padded down in that area the traditional way but focusing on this area.

Now I know there are plenty of Ostomists in the UK & Northern Ireland but like me before my op does the rest of the population have any idea on what a stoma is?  Would this airport security guard have any idea of this strange bulge on my stomach with liquid inside.  As I wear a midi bag I must also add a bag containing what felt like over 125ml of liquid (I had been queuing for 30mins and my flight was shortly after dinner!)

What should I do?  My stoma nurses hadn’t covered this when they told me about the new challenges I would face as an Ostomist.  In this situation I’ll be honest I panicked, I didn’t say anything and ironically the security guard patted down the area, seemed happy and sent me on my way.

Whilst on the returning flight it made me think, should I declare I have a stoma?  I would’ve hated to make a scene when one wasn’t necessary.  I am happy to tell people I have an Ostomy bag, but would I want to be escorted to an isolated room to be searched?  In this security conscious times it was also a concern that the security guard hadn’t noticed (or had he?)

During my previous journeys I had passed through security with no issues.  I asked some friends in an Ostomy group about their experiences.  It was definitely a mixed bag of responses.

Since this flight I have found that you can you can get a passport of sorts for you Ostomy.  A small wallet sized card that explained in several different languages what this ‘strange’ bag of liquid stuck to your body actually is.  I have decided that being a forward thinking Ostomist next time this occurs I will use this card and explain.  Perhaps all airport security guards aren’t educated on what an Ostomy bag is.  By highlighting this to them in a professional way perhaps it could save someone else the embarrassment of it being ‘discovered’

 

If one new person learns what an Ostomy is and they educate 4 people and they then educate 4 people, well…you get the idea :)

Cancerversiary

The start of every new year is always an interesting one. 3 dates, 3 very important numbers will always be with me.
8, 16 & 31

8th Feb = Cancer diagnosis

16th March = operation removing tumor, large intestine and leaving me with a stoma.

31st March = Confirmation that Cancer had not spread, that no further treatment was required at this stage. No chemo no radiotherapy.:) :) :) #LUCKY

3 significant fixed points in time. At the time I knew these events would shape my life. Little did I know how much!

This is probably the first year where I actually forgot the most relevant date.  On 8th My wife gave me a kiss on the cheek and asked me was I 'ok'? in a way that I had to question what she meant?  

It wasn't until she reminded me of the date that I realized. It has been a busy start to 2015! Commissioned blogs, upping fitness activities at the gym and as part of the Nuclear Races Team.  Work is always busy at the start of every year as sales budgets are finalised for the the coming year.  

Whilst all of this distraction is buzzing around in the background I am always concious that my family are not left out. Spending time with Carley & Jack is THE most important part of my life.  Whilst its nice to have my own interests its a battle to balance everything.

Actually...people are right when I list down everything I am really busy.  How do I find the time to fit everything in? I guess the key is: 

IF SOMETHING IS WORTH DOING ITS WORTH MAKING THE TIME

Anyway back to my original point.  My 'Cancerversary'.  I can honestly say this is probably the first year in the last 8 years where I have been 'comfortable' in my own skin. That is not to say vanity still doesn't play its part.

After all the hard work and perseverance my life almost feels in balance?  My family, my fitness and my work.  Each existing in harmony.  Trust me I'll probably regret saying this as everything comes crashing down around me, but at the moment, it is honestly what I feel.  I am in control, 

I am in the driving seat!

Perhaps that is it?  Perhaps for the first time in 8 years I feel like I am in control of my own life?  Its not about Cancer, its not about 'dealing' with my Ostomy/stoma. Over the last 8 years I have simply been a passenger along for the journey.

Over the last 12 months I have turned having an Ostomy and Beating Cancer into a positive.  Using it to drive myself forward.  It has felt less of a weight to carry and more like the fuel that drives me!

(Sorry a lot of analogies I know but REALLY hard to put these feeling into words!)

As strange as it may seem I do not always look back negatively about what happened to me 8 years ago.  I have a healthy respect for Cancer, for being an Ostomist and how delicate our existance can be.  

BUT......

That cross road in my life is why I am here now.  Why I am raising awareness for Bowel Cancer and Ostomists.  Why my family are so important to me.  Why I am part of the Nuclear Races team and training hard. 

As I am sure I have mentioned before I do not subscribe to the Y.O.L.O. (you only live once) or live like its your last day.  However, I cannot ignore how lucky I am to be here, right here, right now!

Respect the past, enjoy today.....but most importantly look forward to tomorrow :)

Cancer Its an old persons disease.....is it?

Today is Cancer awareness day.

As I am sure anyone watching the news or listening to the radio has heard Caner UK now claim it will effect one in two of us. A very scary statistic  Whilst I am all for awareness, fund raising and any general activities regrading Caner awareness I did have a concern over something that followed this statement.

Whilst you cant argue with their research the 'reasons' they gave for this change was based around people living longer and Cancer being an 'old persons' disease.

I'm not sure why hearing this statistic has bothered me?  Why it prompted putting virtual pen to paper?

I was 28 when I was diagnosed.  Far from being classified as 'old'  Over the years I have also spoken and met with many many people who have also fought and beat cancer, again many of them far from 'old'.  I have also had the misfortune of hearing about many people that had lost their personal battles with Cancer.  One person very close to home.  A family friend who was diagnosed with Bowel Cancer only a few short months after myself.  Darren battled valiantly for many years but was finally taken from us an his young family

Cancer was the reason I started this blog but I also started to help raise awareness for people in my demographic.  Mid 20-30 active people.  Labeling Cancer in this way as an old persons disease (whilst potentially accurate) concerns me.

I had always thought of Cancer as an old persons disease and something that would never happen to me...until it did.  Don't misunderstand this post I am not try to scare everyone into being afraid of the scary Cancer Bogey man.  My intention is to only ensure that people have a healthy respect for it

So WHY hearing this statistic has bothered me?  WHY has it prompted putting virtual pen to paper?
Perhaps it is because my own diagnosis is only a few short days away?

2015 marks my 8th year of beating bowel cancer.  My 3rd since the 'all clear'  Perhaps it subconsciously reminded me of how young I was and how lucky I am that I am still here?

I'm having trouble trying to explain how I feel?  Perhaps this analogy will make it clearer
I don't have a fear of heights, I have a fear of falling!

So anyway back to my original point.  Yes, Cancer statistics cannot be ignored. The increase of diagnosis in the older generation is increasing. (however this could also be becuase the tools we have for earlier diagnosis have also improved? But that's a bit too deep for even my blogs!  lol )

I guess what I am saying is don't be complacent, don't assume it will not happen to me.  If you have any suspicions, any lumps or bumps that were not there before, get them checked out.  Dont assume its an old persons disease and that it will never happen to me!


http://www.cancerresearchuk.org/cancer-info/spotcancerearly/

Sleeping with an Ostomy

Once again I aim to be honest and tell you my thoughts and opinions about being an Ostomist. 

After my operation and removal of a rather large amount of my insides getting comfortable when laying down takes some getting used to.

So how do you sleep? Again not something explained to you when you happily leave the hospital.

SIDE NOTE:
I often wonder if I should write a book titiled:

Being an new Ostomist...Answers to the questions you really wan/need to know!

A book reccomended for new Ostomists explaining the real world questions that arent covered during your hospital debrief

Answering questions I think every Ostomists asks themselves when they first return home. Perhaps I will ;)

Anyway I got side tracked. Back to my original point.  How do you sleep?
Laying on my stomach feels odd as I feel like im trapping my stoma.

On my right or left side creates amother rather unique Ostomy phenomenon.  As my stomach/body cavity now has alot more space when I lay on my side everything moves and drops to this side. Its a VERY weird sensation. Ill try and tag an accompanying pic but the opposite side im laying on shrinks. It like having a tummy tuck just on one side.

That leaves laying on my back. No Ostomy issues here, just good old fashioned man issues.  I snore! Badly if my wife is to be believed ;)

After 8 years I have found my suitable sleeping position. Half said half front...problem solved?

Afraid the truth is no matter how I sleep one issue never goes away.  Lets be honest people when sleeping our body digests. Digestion creates output and.....gas!. It also very common during this process for air to build up..resulting in bed farts!

Cumon people..dont deny it you know it happens ;)

Well having an Ostomy doesnt stop this happening. What does happen is during the night or morning you wake up and your bag has turned into a balloon! A zeplin of air. Very uncomfortable! Also this often tests the bonds of the adhesive. This is also the worse time for me and my arch enemy....LEAKS!

Actually ive said it many times as a joke but I mean it sincerely.  If asked what do I miss now Im an Ostomist...what has it taken away from me. Honestly many things mostly based in vanity.

However, I genuinely miss farting! Yep sorry, you can deny it but when your alone there is nothing like that sensation of passing wind. You can feel it building then the sensation of relief!  Lol

Crude, but honest and true. Now dont misunderstand me I can still hold my own in the flatulanve smelling division.  In fact emptying air from my bag would rival anyone!

Dont underestimate the little pleasures in life. You may miss them when they are gone. ;)

19th Jan and first blog post of 2015? Shame on me :(

well I havent posted for quite awhile.  A common theme, life has been very busy!  So sorry for a short post but...

At work there always seems to be something to do

My training is ramping back up to 4 days a week (yes I am fixed) blog about that soon!

Being part of the Nuclear team is AWESOME, but its also keeping me rather busy

Then there is trying to find the time to spend with my family.

I'm actually writing this blog on my phone whilst stuck in some traffic on my way home from work. ;)

So this is more of a taster blog than a full post.  But to give you a hint I have some new posts sharing my time with the Nukers, my road to recovery and getting back in training plus the usual unique Ostomy based blogs coming very very soon.

Happy 2015 people!