About Me

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I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010. Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..

Thursday, 31 March 2011

On a Mission now........

Recently, since I've started to feel a little better, I've been researching stuff about screening programmes and raising awareness - particularly in the UNDER 60's age group for Colorectal (Colon/Rectal/Bowel) cancer.

Some of you may, or may not, realise that in England and Wales the screening kit is sent out automatically to people between the ages of 60 and 74 years of age - HOWEVER in Scotland their screening programme begins at 50 years of age.
This seemed odd to me so I emailed the NHS Cancer Screening department last night and asked the following question...

I am curious to know why the screening programme is aimed at the 60+ 
age group in England and Wales but starts at 50 yrs in Scotland.  
Since my own diagnosis of Rectal cancer (at 49 yrs old) I've come 
across others in their 40's and even some in their 30's.  
Screening at 60 is showing positive results but starting at 50 may helpto find some tumours before they develop to a later stage. 
I'd be interested to know why there is a difference in screening ages  in Scotland compared to England and Wales. 

Today I received a reply....

Before starting the screening programme we conducted a pilot study 
which showed that the most clinically and cost effective age to start 
screening was 60. 
80% of bowel cancer cases occur in people over 60. 
It may be that we will extend the age in the future.

Now.... you all know me well enough to realise that this is not a proper reply to the question that I asked therefore further communication was necessary :-) 

Thank you for the reply....  
However, I'm still unsure as to why Scotland start their screening at  50 not 60.... 
Do they not come under the NHS as well? 
I need to understand why there is a difference

Their follow up was brief and to the point .....

Carole They do but they have a different budget and so decide on different priorities.

Anyone else think that as England and Wales come under the same NHS, we should ALL be being offered the same screening service? 

Usually, after a bit of a rant, I'll say 'Off my soapbox now'....BUT not this time. 
Why is life considered to be of more value in Scotland if you're in the 50+ age group...why is it not important that some of the 20% of cases that occur in younger people could potentially be caught at an earlier stage?......MONEY and BUDGETS and 'different priorities'...
If you are in the 50 - 60 age group, how does it feel to be told you are not a priority when your cousin/friend/etc up in Scotland is? 

Admittedly, in my case, it WOULDN'T have made any difference at all (there's no way they'll consider lowering the age to 40) but surely it COULD help the percentage of people who fall into the 50-60 age group in England and Wales. 
Best thing to do is we should all move to Scotland in our late 40's eh 

There are currently approximately 40,000 cases of bowel cancer discovered every year - which means that around 8,000 of them will be in people under 60...
I'd love to know how many of these fall into the 50-60 age group. I'd guess at 'quite high' figures...

Remember also that if discovered by screening many people will not fall into the later stage categories - therefore saving the NHS a fortune on surgery, ongoing chemotherapy, radiation etc. 
The smaller and earlier a tumour is discovered means less treatment and less cost to the NHS...do they really think that money saved on NOT screening is cost effective in the long run? 
I can't see that myself. 
My operation alone must have cost them thousands, along with my 10 days in hospital, Chemoradiation treatment prior to surgery then adjuvant Chemo (if I'd decided to do it) plus now ongoing check-up's for the next five years..... 

Interested in your comments.

And no, I'm not getting off my soapbox....I'm going to think about what to do next about this unfairness. 

In the meantime, I'm concentrating on trying to raise as much awareness as possible with regard to symptoms.

Added Note:
I've received  numerous emails about this post - all offering help and this is something below that I need help with at the moment.....

If you can find any statistics for me on people between the age of 50 and 60 who are diagnosed with bowel/colon cancer that would be really helpful. 
I can only find 'overall' statistics at the moment. I know that 80% of cases occur in the over 60's but need to know HOW many fall into the 50 - 60 age group. 
The other data I'm having trouble locating is how many people between 60 and 65 are diagnosed at Stage 3 or above via the screening process. 

Any links appreciated - many thanks. x 

Monday, 28 March 2011

Travelling with a Colostomy Bag....

Before I organised my surprise visit to Rhodes I admit to being worried about moving outside my comfort zone with 'baggy'.......At home I'm in my routine, I know exactly where everything is and my daily routine now takes probably less time than going to the loo in a normal way would.

However being 'away' from home was something I'd not tackled previously - apart from my time in hospital of course....but that was when I still hated baggy, when it took up my every waking thought and was the cause of huge distress to me, initially.

So, before I went I read up on various different websites about any potential problems with travelling - particularly flying. I read that some people said it was 'fine, no effects at all' whilst others said their bag had 'inflated during flight', or been 'particularly noisy' and they'd felt embarrassed by it.
I decided the only way to find out was to try it and see!

I took all my supplies in my hand luggage for two reasons, firstly so that I could do as many changes as I felt I needed to and secondly just in-case my luggage went astray. I didn't fancy being stranded without bags for even a few days!

I can now say without a doubt that travelling with baggy is easy, no different from going to Sainsburys or anywhere else locally. It didn't inflate, it wasn't noisy and the whole flying experience was the same for me as for everyone who was bagless! :-)
I'd forgotten how noisy planes are anyway - even if it had decided to become fartybag for the whole journey, no-one could have heard anyway....but it didn't behave any differently to normal anyway.

Heathrow was an experience though...if this had happened to me a few months ago I would have been mortified and fallen apart in tears - but not now :-)

As I went through the scanner at Heathrow the alarm went off (this is 'normal' apparently for both me and Sarah - for some reason we both set off alarms for no apparent reason)

Security woman says in her 'stern' voice
'Step to one side and raise your arms'
She then uses her little handheld scanner on me which doesn't make a sound. So she then 'pats me down' and all is well until she arrives at the bag area.
'What's this?' she asks LOUDLY!
I say (perfectly calmly & quietly) 'It's a colostomy bag, I have a permanent colostomy'
'What's that then?' she says, again LOUDLY
By now a few people have turned around and are watching the developments with interest...they probably thought they were seeing a drug dealer caught leaving the country with their stash

I said 'I have a permanent bag attached, I have a stoma, I had cancer'
She says 'Lift your clothing so I can see it & investigate the contents'
I say 'Nope'
She says 'Pardon! What do you mean 'No'?'
I tell her I'm not lifting my top in view of everyone, and again say it's a colostomy bag that I have for medical reasons
She says 'What's in it then?' LOUDLY
I say 'Crap' (LOUDLY) because now I'm pissed off with her bossy attitude and mannerism towards me
She just looks puzzled and says 'I need to see what's in the bag'
I now start to laugh and say 'No you don't, really you don't want to see - trust me on this one'
Luckily I then spot her colleague standing just to the left of me and I ask him 'Excuse me, do *you* know what a colostomy bag is?'....
He replies 'Yes madam, I do indeed'
So I ask him if he can please explain it to his colleague without the need for me to show her - in public view of everyone!
He speaks to her in Urdu - she looks completely shocked and says 'Off you go then'

LOL! I can't believe I'm the FIRST person she's ever come across with a colostomy but if I am, I hope I've made her think about *how* to ask those difficult questions.

All was then well until I got to Athens - where I had to change flights. This is because there are no direct flights outside of the holiday season.

Going through security to get my connecting flight the (very nice) security man asks me to open my hand luggage bag and explains that the scanner has picked up a spray can. He says it's probably perfume or similar that I've forgotten about.
I open my bag and take out the spray (which I'm allowed to travel with) and he looks at it and says 'It's fine....may I ask why you have a colostomy?'..
I tell him it's because I had cancer and to remove my tumour I had to have a permanent colostomy'
He looks quite sad at this and says
'But you're so young!'..Lovely man :-)
I say 'Yes but at least I'm alive at the moment, eh' - he smiles and says 'Welcome to Greece, have a great time'

Yes! that's more like it Heathrow lady. It just takes a few moments to *think* about what you're doing and all is well.

I was also searched at Athens coming back - again the alarm went off (sigh) and although she scanned and then hand patted me down she completely missed the bag, so no need to go through it all again.

So, if you have a permanent colostomy (or a temporary one) and this is what directed you to my website I can tell you that travelling with your baggy will be fine :-)
Just be prepared to come across people who've not had any proper training in this area :-)
Apart from that, remember to pack your supplies in your HAND luggage and not your suitcase and all will be well.

Another note on the 'bag'...some people have asked me why I've not named it. Simple answer is because I never named my bum so I don't want to name my stoma. 'Baggy' it is and baggy it will stay.
Happy camping travellers :-)

Much luv xxxx

Friday, 25 March 2011

People who made it possible........

Now that I've let you all know where I was for my surprise visit, it's time to thank those that made it possible.

Big thanks go to Rab, James & Leanne, Jacqui, Mum & Dad, Nayla...without your help I couldn't have done this trip.

Jacqui came up every morning at 7am to sort out Dj and make sure he got to school on time, had breakfast and was organised.
Mum and Dad made sure he had someone to come home to after school. Mum also helped him to complete his geography project which turned out brilliantly and has put him in line for a 'house' prize.
Rab organised the place so that uniform was ready, homework was completed on time and kept things running - as well as going to work for 6 days without a break.
James & Leanne took Dj for the first weekend so that Rab could work on a function without worrying about Dj at home.
Jacqui and Nayla sorted out the following Saturday for Rab whilst he, again, had to work.

So sending HUGE thanks to you all for your ongoing support. Some things would not be possible without you guys

Much luv xxxx

Wednesday, 23 March 2011

10 Days in Rhodes ...........

As some of you rightly guessed, and some of you knew before, I decided to pay my sister Sarah a surprise visit in sunny Rhodes.

Me and the bag set off on Friday, 11th March and returned on Monday, 21st after spending 9 days in the (mostly) sunny weather. The days were spent sitting by the sea, climbing mountains (okay, that's a slight exaggeration - it was a very large hill that felt like a mountain), browsing in the few shops that have opened pre-season, visiting a few local attractions and just simply relaxing for the time I was there.

My sister had no idea that I was arriving. When I reached Rhodes airport on the Friday evening I telephoned M, her partner, and he came to get me without telling her where he was going.

He went into their apartment ahead of me and spun her a tale about having a customer in the taxi who needed somewhere to stay for the night. (I was hiding outside whilst all this went on)
Sarah point-blank refused to have some strange 'bloke' in the apartment whilst M returned to work.
In the end she agreed that he could come inside to eat before M took him elsewhere.
I then came inside the apartment and initially she didn't register it was me, but after a second look she just stood there saying 'Oh my God! I don't believe it! How are you here!' then burst into tears....happy tears I hasten to add :-)
I reminded her that I'd told her previously that one day I'd just turn up at the airport and call a taxi to get to her. Now she knows that I wasn't joking.

We spent the week relaxing, catching up, going for coffee by the sea & in town, visited the house that Hitler lived in for a while during WWII, went to Kallithea Springs, Rhodes Old Town...some pictures below.
It's very early yet for great weather in Rhodes, and the week before I arrived they'd had lots of rain and grey clouds. I wasn't expecting sun at all but that is exactly what we did get...sun, sun and more sun. It wasn't high temperatures (between around 19c/21c) but every day, apart from one, was a clear blue sky with just a scattering of fluffy clouds.

So, I took the sun to Rhodes with me and then I brought it back with me. Yesterday and today have been lovely here in London - I was outside with Dizzie cat earlier in a T-Shirt ....two weeks ago I was in heavy winter jacket and gloves here - and that was just to put the rubbish out LOL!

This is the view that Sarah wakes up to each morning......

Here is the chapel where Sarah regularly lights candles for many of you...

These next two were taken inside the chapel....

Two sisters enjoying the spring sunshine & relaxing with a coffee in one of the numerous great coffee shops in Rhodes........

How blue is that sea!................

We went up the mountain to see the house that Hitler lived in during parts of WWII.
On the way we visited a very old Chapel and outside there is a tree that is apparently 'thousands of years old'. The inside is completely hollow so obviously we couldn't resist taking the 'tourist shot'

This was the very pretty 16th Century Chapel - there were bee's nesting inside, the sound of their buzzing was really amplified once you entered.....

This is the remains of the house that Hitler had built for him...it's been left to rot on purpose

Halfway up the mountain

Old Town Rhodes, inside the Castle walls......

There are LOADS of stray ferral cats in Rhodes. This one has adopted Sarah and unlike the vast majority of cats there, he is confident about being around people. Sarah now feeds him daily and has named him Spanos.

The next few pictures are just random scenery shots...I want people to know that there is so much more to Rhodes than just the Faliraki nightlife and the beach...

That's it for now....I'll do a separate post about travelling with the bag & other stuff at some point.

Friday, 11 March 2011

Friday and it's sunny .......:-)

Today I woke up to lovely 'spring' sunshine and decided that me and the bag are doing something together that we've not done before.....

I'll let you know what it was and how I got on later.......

Any guesses? :-)))

Monday, 7 March 2011

Made some plans now........

I've moved forward somewhat since I've made some plans...

Last week I went to see my boss and had a meeting to discuss how I'm doing. She has been incredibly supportive and assured me that there is no pressure at all and I should only return once I feel well enough to cope.
She also offered me reduced hours, reduced days, any equipment that will help me (special cushion, foot rest etc) and it's made a huge difference to how I feel.

I realised some time ago that I was struggling with guilt...sounds stupid maybe but I reckon people out there with cancer will be able to relate to what I'm saying.

Apart from all the physical stuff you go through with cancer there is also the emotional and financial side of things.
As I said, I realised some time ago that I was struggling with guilt..I felt guilty for being unwell and messing up the finances, guilty for not being at work because of the increased workload put onto my colleagues, guilty for worrying everyone in the family, guilty for not being able to do domestic stuff and watching Rab work all day then come home and sort things out here, guilty when I see/hear about others who are struggling more than me, guilty for just getting cancer.

But then I had a long chat with Hazel a few weeks ago and she helped me to put things into perspective - thank you Haze.

Firstly she told me to 'put to bed' the idea of coming back to work right now simply because I was setting myself unrealistic dead-lines - hence increasing my feelings of guilt when I couldn't meet them.
We also discussed other things which I'm currently putting into place - she gave me a shove when I needed one and I've since been able to start planning again - but in a realistic way now.

So my plans are to do my counselling (when he finally gets back to me with potential dates)...to look into doing some Yoga or similar....keep eating healthily and take my supplements......return to work after the Easter school holidays IF my wound has healed properly and I feel able to.....forget about June until June arrives and then worry about my CEA levels and scans only once I get results....get away for a break (planning on visiting my sister in the summer - more on that nearer the time)

My wound is still healing but it's nowhere near as sore as it was a while ago.
I'd like to say I'm no longer tired out, but truth is I am some days. Again though, it's better than it was a while ago.
I no longer have hormonal headaches (radiotherapy frazzled everything & threw me into immediate menopause) which I've suffered from all my adult life so that's a definite 'YAY' moment :-)
I no longer care if all the housework isn't done on time.
I've made plans and I'm going to move forward over the next few weeks, without a doubt.