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..

Sunday, 31 October 2010

I'm ready to talk about this now.....

Okay, you all know that my surgery will result in a permanent Stoma and therefore permanent Colostomy...you also know I've struggled (to say the least!) with this and found it very difficult to come to terms with however I've now, reluctantly, accepted this is what must be....

I was talking to someone the other day and she said she had no idea about the actual size or appearance of colostomy bags and it made me think 'Actually neither did I, before all this happened to me'

So who wants to know what the bags look like then? Here they are below:

Attractive eh :-)

This one above is a nice little 'two piece' item....Well actually, it's not that 'little' but it's not the largest.
I'll be spoilt rotten in hospital with HUGE big, drainable, transparent ones until things settle down after the surgery - lovely, can't wait :-)

This little number above is a one piece...

And this one above is what they call the 'Cap'..it's a lot smaller than the others and designed for once the bowel has settled and you can be more or less sure that it's adequate for short periods. My stoma nurse said 'Perfect for when you fancy nookie' - LOL
Put's a whole new meaning into 'It's okay, I'm protected - I use the cap' :-)

This picture below shows the size difference between a medium sized bag (day use) and the smaller, more discreet 'cap'

So, whether or not you ever wondered what colostomy bags look like, now you know :-)

You also have to use a little adhesive remover spray when you change them. I hate pulling stuff of my skin (like plasters for instance) at the best of times.
Guess I'll have to just get over that now then.....

Tomorrow I may post some other pictures around this subject. Watch this space ....

Saturday, 30 October 2010

Pre Christmas Spirit.....

You will see that I've set up a link on my page for Trinity Hospice.

This is a service that relies on donations to ensure they can continue to provide quality care for patients who receive a terminal diagnosis.
They work with families to either keep people at home - often preferred - or to offer quality care within the hospice itself.
The Hospice is a beautiful building with quality outside grounds so that people can sit quietly and just enjoy the lovely gardens - or relax inside the visitors/family room, instead of feeling like you are stuck in a clinical environment.

All services provided are free - therefore raising funds is always a priority for them.

Help me to kick this blasted cancer up the butt by turning my diagnosis into something positive and donate to this essential local resource........ Not asking for vast amounts or regular monthly donations - just a pound or whatever you can comfortably afford to give.
Maybe you would consider buying one less Christmas present this year (let's face it, we all buy too much at times..) or one less pack of overpriced Christmas cards, and give a small amount to Trinity Hospice instead?

As you know, Rab is cooking Christmas lunch (for two days) this year and we will be asking for those present to make a small donation.
Once I'm feeling better, after my surgery, we will be organising other fund raising events...Djamel has already said that he'll walk around the common 4 times (!!! It's huge!) on a rainy day if people will sponsor him - so that's something we'll be organising in the future.

I may well be needing them at some point in my life so I wanted to try to do something for them whilst I'm around :-)

Thank you in advance.

Friday, 29 October 2010

Thank you to Mum and Dad.......

Mum, Dad - just wanted to say 'Thank You' for the gift of the supplements - so very appreciated as you know.

Also for the lovely serving dishes which will look fantastic when Rab cooks his two Christmas lunches this year.

I know I'm such a miserable cow at times and I know I take it out on people closest to me - you sometimes get the brunt of my grumpiness and snappy moods - and I'm genuinely sorry!

It's just that sometimes I simply don't want to even think about this blasted 'thing' called cancer.

I'm aware that you only ask because you care and I'll try to be more patient with you both - but the day I become totally perfect will probably be my last on earth - in the meantime I'll carry on and just do my best eh :-)

Hugs to you - both for loving me and forgiving me, always xxxx

Thursday, 28 October 2010

Just because of Shents! :-)))

Because of my deep respect, love and admiration for Shents - I am NOT putting up any post about the Newcastle vs Arsenal match this evening (Weds 27th Oct) ....

And I also won't be putting up a post when they play each other in the league shortly......

Is this favouritism? Yes....and what!

End of transmission.............:-)

Tuesday, 26 October 2010

Thank you to Rab's colleagues....

Today, Rab came (struggled) home from work laden with gifts for me from the people he works with.

Rab had arranged his annual leave around my operation - y'know, the one that didn't take place in the end...... Whilst he was off work his colleague, Riad, organised a collection amongst their work colleagues and today Rab arrived home with two lovely bouquets of flowers, a large tin of Celebration chocolates and a large box of special collection chocolates plus a card that has been signed by the whole staffing team.

I was really chuffed - the flowers smell so lovely, especially after the horrible, damp, grey, cold day we've had today.

So a big thank you to the Radisson Team - especially Riad for his thoughtfulness and for being there for Rab xxx

Monday, 25 October 2010

It's not always the amount that matters....

Yesterday in between cooking dinner and supervising homework I managed to watch the Man City vs Arsenal match.

For some strange reason the commentary team 'expected' Arsenal to lose! Well.....tough - you don't always get what you want eh :-)))

On 19th October Arsenal played Ukranian side, Shakhtar Donetsk, in the Champions League. We won 5-1, which was a good enough result :-))

Yesterday we scored 2 less goals but the win felt even sweeter.....Man City vs Arsenal 0-3...

This excellent result put us into 2nd spot in the premier league - only other place I'd rather be is 1st :-)
What you got to say about that (negative) commentary team? ....LOL!

Cesc is so amazing that when he's finished being a footballer, he's going to audition for a part as a superhero. Here he is above practising his flying skills :-)

Sunday, 24 October 2010

Things that matter over the years......

Something Dj said this morning got me thinking about those little things that matter - things that you find yourself keeping for years and years - not because they're valuable but purely for emotional or sentimental reasons.

I've got lots of little bits and pieces from both boys - things like 1st Easter cards made at school, notes from teachers, reports, cards.
Both boys got me a small gift when they went away on their school journeys in Year 6 - James' gift was a small china little Teddy, Dj's was a small soft rabbit - they sit on my shelf in my room and I could not part with them.

As a parent you sometimes find yourself keeping things safe for them as well - and this was how the conversation started this morning....... Dj asked how 'Charlie' got to be so battered....So, who is Charlie?

This is Charlie

His full name is Charlie Bear - original eh...:-) - and he's now 29 years and 5 months old, he lives in my bedroom but belongs to James.
Charlie Bear was his first bear - he got him for his 1st birthday and they went everywhere together - until James' life moved on and there was no longer any space for Charlie...... Having said that he's never ever wanted to part with him permanently - hence the reason he lives in my bedroom.
He's lived an interesting life, has been involved in drawing on walls, messing up the toy box, tipping drinks over, drawing on freshly painted walls with my make-up, spraying perfume into the bathroom until you literally could not breath, making sink bubbles with the most expensive bathsoak......you name it Charlie was there in the frame, always involved and always looking so innocent.......

If I had a pound for each time I'd heard the phrase 'But it wasn't me mummy, it was Charlie' I'd just be so rich now :-)

Dj has a dog called 'Chad'

He's had him since he was a year old - therefore he's now 10 years and almost 2 months old...(those who know the story of when Chad got lost at Gatwick airport will also know that the age of 'this' dog is not quite right however sticking to the story and therefore Chad is just over 10 years old now) :-)
Again, he's been everywhere with Dj - wherever Dj has slept Chad has slept too - Algeria, Tunisia, Malta, Nan and Grandad's, Lou's, Sarah's (when she lived in the UK), Dorset to name a few....
Chad doesn't seem to have been involved in as many naughty episodes as Charlie but that's just because Dj didn't seem to realise he could blame him (in other words James, you were more cunning- lol)

So, what's the point of this post then?
Just thoughts really - I was thinking what do I have left from my childhood, which item did I keep with me for all these years since childhood - which item would I leave behind that was 'mine' and 'special' and the answer was nothing....

I never had a toy that I was seriously attached to, I didn't like dolls or traditional girls toys, things I had in my teens (LP's* etc) got 'lost' along the way as I moved from place to place...one thing I lost that really did matter and still bothers me today was a voice recording of James when he was about 3 or 4 years old. I kept it in the same place always and then one day it just wasn't there.
When I tell you I turned the house upside down looking for this, it is NO exaggeration...I never did find it though. Even now, talking about it I have the desire to go and search again (it wasn't even in this place when it got lost)...mad eh :-)

I know that Charlie and Chad will be with the boys respectively when I'm not able to look after them any more - but if I'd had a soft spot for a doll I have no idea what would have happened to that afterwards - neither of my boys are going to need a doll in their lives so maybe it's a good job I didn't like traditional girls toys :-)

And to answer the original question 'How did Charlie get to be so battered?'....love, Charlie was so loved he was squashed, sat on, slept on, hauled around, thrown on and off the beds, target practice for J when he was being a secret agent, taught to swim in the bath, dressed in a cape and flung from the window (yes, he was magical and he could fly), he was told the deepest secrets, read the most interesting books, took part in every aspect of a small boys life..... You name it and he's probably experienced it along the years.
Charlie ended up looking like this because he was so loved - which is exactly why I don't get him all fixed up. He's supposed to look like this now :-)

And I strongly suspect that Chad will look pretty much the same in another 20 years time....

So, what do you have from your childhood and why do you keep it? Who will have it after you?
OR what are you storing for your children from their childhood?

* LP's for those of you too young to remember - Long Playing records were Albums recorded onto vinyl instead of today's CD's or MP3, iPods etc....

Monday, 18 October 2010

Other things going on in the world despite my problems ......

This post has nothing to do with cancer in any way shape or form - it's about thinking about other people and what they are experiencing on a daily basis.....

Yesterday I was thinking about other things taking place around the world...

I started thinking about news items that had not been mentioned for a while now - obvious ones come to mind such as little Madeleine McCann - once she was 'breaking news' daily for months and now as time has gone by rarely a mention anymore :-(

So, who remembers Paul and Rachel Chandler?

DON'T google it! Think for a moment......

My reason for posting this is because this month, in a few days time, it will be a year since Paul and Rachel Chandler were taken hostage by Somali pirates.

The last news of them via TV interview was back in May this year - nothing has been reported about them since.
Our governments, along with all others, despite their protests of innocence and 'We don't deal with pirates/terrorists/hijackers' claims - ALL western governments have been made fully aware of numerous ransoms that have been paid to get large vessels returned - ransoms in the millions of dollars region.

The price for Paul and Rachel Chandler dropped to a paltry £100,000 - a small price to pay to save the lives of two British people kidnapped and held in probably terrible conditions for almost a year now.
So what this means is, they'll pay the price to get a ship back but they won't cough up to get our people back.....

No wonder our kids are confused about morals at times, they learn it all from those in power. Life is cheap - but for the Chandlers not quite cheap enough apparently.

Anyway, I'm disgusted by their abandonment - I've emailed our new Foreign Secretary, Rt Hon William Hague yesterday asking what he's doing about them...I don't suppose I'll get much of a reply but I'll let you know.

One thing I did find whilst browsing around was a maritime blog that Paul and Rachel were keeping about their travels...it's really interesting stuff and then you get to the last entry which just states simply...... 'PLEASE PHONE SARAH'....

If you're interested in reading more about their travels, here is the link to their blog....


Keep them in your prayers and thoughts....almost a year separated from their family and even more worryingly from each other....

Sunday, 17 October 2010

I have a date.....

......not with Richard Armitage -

because I'm a happily married and totally respectable woman and anyway my husband is twice as lovely (sorry Rich....)

I have date with a tubby little Greek man who just so happens to be a colorectal surgeon...... I'd like to report that he's taking me somewhere nice but that's unlikely to be the case - however he is taking away half my insides (Oh okayyy! I'm exaggerating, he's *only* taking 15 inches of my colon and another 6/7 inches from the rectal area.......) and altering all my bodily functions, on Tuesday, 9th November.

I'll not have to queue for this again once I'm all settled down >>>>>>>> :-)

Keep me in your thoughts this day (unless of course they cancel it again....)

Apart from that what's been happening?
Not too much really. I ran out of some of my supplements and have noticed the difference in how I'm feeling, my energy levels have definitely dropped off and I've gone back to feeling constantly tired again.
I've now ordered more knowing that I need to take them, at least up until the operation, to ensure I'm in good condition beforehand.

Yesterday Rab and I took Djamel shopping for new school shoes, few new pens, a couple of study books he said would be useful and a French dictionary and we had lunch out (just Pizza, nothing extravagant)....returned home £95 lighter!
I have no idea how people cope on only one income but we'll soon be finding out how to live on much less.
My money will go to half pay this month - and I have no reason to feel ungrateful because it's great that my employer's have paid me for this whole absence and will now continue to do so for the next 6 months at half pay rate.
Many people out there get diagnosed with cancer and then have to work out how they can survive on sickness benefit @ £78 a week.
We could not manage on that and would probably have to take other action - all of which has been discussed just in-case!

Today I cooked Guinea Fowl for sunday dinner - why? Because I've never cooked one before.

It was nice actually - so if you've not tried it before take the plunge :-) Quite enjoyable - even though I only eat the smallest bit of meat/poultry these days.
Veggies served with the lovely Guinea Fowl came courtesy of Loretta's allotment, Cauliflower, Red Cabbage, Spinach - all delicious Loretta, thank you..... :-)

Last week I just did very little, had a few days where I just wanted to sleep again after Dj had gone off to school....partially a bit of stress I think and partially lack of supplements, plus got a few worries about other people out there....and life goes on eh

Catch up soon x

Tuesday, 12 October 2010

New appointment date?

Noooooo....not yet

Despite the fact that I was told on Friday that someone from appointments would contact me on Monday to give me a new appointment, I've not heard anything yet.
Today I contacted them and asked for details of my rescheduled op, to be told 'No, there is no date yet - you need to ring back, maybe try again tomorrow'...

So, that's what I'll do then - ring back tomorrow. Sleep on the stress again and hope that by tomorrow someone realises that to go through with this I NEED to (re) prepare MENTALLY and to do that I need to be made aware of when it's all happening....

Apart from that I'm feeling quite fed up this evening as I've now heard about 5 people in the last 5 days whose cancer has returned....Had a long telephone chat with a friend last night about her mum moving to Stage 4 after being clear for two years now :-(
This was after finding out about 3 other people over the previous 3 days - two who had been 'clear' for over 3 years and one who has just been newly diagnosed.

I said to Rab afterwards it just feels like it's all the time we're hearing about someone else either being diagnosed or re-diagnosed

Then this afternoon someone else I've come to regard as a good friend told me that there is a chance that their cancer has returned in a new spot.

I'm feeling like it doesn't even seem to matter about how hard you fight this bastard thing, or how strict you are on diet, or how determined you are to get through and get rid of it, or how positively you face things - IT calls all the shots, we are simply spectators...and that's how I'm feeling tonight.
Sad, angry and frustrated with the whole thing called cancer.

Sunday, 10 October 2010

Happy Anniversary Mum and Dad

11th October 1958 to 11th October 2010 - Married 52 Years Today!

Today, Monday, 11th October 2010 is my Mum and Dad's 52nd Wedding Anniversary.

I just wanted to say 'Happy Anniversary' from us all and 'Well Done'!

More recent pictures of the happy couple :-)

This one below is just a typical photo of my Dad really ........One day the spider WILL bite him and none of us will take a blind bit of notice :-)

Nice Hat! Another 'typical' photo of my Dad

And this one was taken at James and Leanne's wedding last August (2009)

And now lastly these ones taken this evening - Hope you both had a very Happy 52nd Anniversary Mum and Dad xxxx

Still managing to laugh together after all these years :-)...

Dj and Dean below - 2 cousins on a mission, an X-Box mission :-)

Lastly, Dj 'fixing' Grandad's hair....lovely style (not!)

Well Done Sis & Well Done Rhodes, Greece ;-)

As some of you know by now, my lovely little sister Sarah lives on the beautiful Greek island of Rhodes (Rodos) and today they held their first ever event for 'Race for Life'.

All proceeds raised go towards the training of two nurses in Rhodes hospital for a post grad course in Nursing and Psychological Oncology.

Rhodes is a small Greek Island and I think it's great that they took the initiative to do this......... As you're probably aware they (along with the rest of Greece) are being absolutely battered by government cutbacks at the moment and could easily have just said 'Sorry, we can't afford these posts anymore' - but instead they've got together with the Greek Cancer Society and organised this fund raising event.

Many people turned out on the day to support the 'Rhodes for Life 2010, Race Against Cancer' and my sister was one of them....... She ran for me and I'm so so proud of her....she even had my name on the back of her shirt, along with others in her running group :-)

Pictures courtesy of Sarah below:

Well done Sarah and all your team. Maybe next year I'll be there to do the Rhodes for Life 2011 with you all :-)
I hope that enough has been raised on the day to make sure that Rhodes hospital get the funding they need to pay for these two essential posts.

Friday, 8 October 2010

Another of Dj's thoughts.....

Conversation with Dj at 'lights out' time this evening....

He's been feeling a little insecure this week, probably due to the operation schedule being altered last minute plus some silly stuff going on at school...

Him: I've finished reading now, can I get a hug?
Me: Yes big hug then good night, sleep tight
Him: Mummy, can I get a second hug tonight?
Me: Yep, double hugs is fine
Him: What day would you have had your operation this week?
Me: Tuesday - 3 days ago now
Him: Would you still have been on the secure ward by today?

LOL! ....I know I've been slightly stressed lately but didn't think I actually needed sectioning (yet)

Back to What I do Best.....

Had a little think about things this afternoon - mainly about the new date for the surgery and how to get this organised now.
I have to plan things around this operation and I need an indication of when it will happen now.

So decided to do what I do best, put my 'Official Nuisance' suit back on again (complete with tights, cape, mask and badge) and start to chip slowly away at everyone until I get a new date.

Success - late this afternoon after numerous phone calls, voice messages left for people and emails sent out I received an email from the colorectal nurse informing me that P (in admissions) should have a new date for me by Monday and if I've not heard from her by late afternoon to give her a ring to find out the information.

So then I did the next thing that I do best....I cooked (well started cooking) something.

I've always said every year that I WILL make my own Christmas pudding this year - then I always end up buying one instead.
This year I've made my own :-) and it's currently cooking away happily for the next 10.5hrs then it will be kept in a dark place for the flavours to fully develop in time for Christmas.

This year Rab will be in charge of Christmas lunch (Hey! what do you mean you've all got plans that you'd forgotten to tell me about...lol) - Rab's got really good at cooking actually, 'Practice makes Perfect' has been proven in his case
He will be cooking and I will be supervising (from the sofa). It'll be as good as it always is - I promise, with the addition of home made Christmas pudding.
Mum, you're in charge of mince pies as always.
Lou - am I getting a cake this year?

Thinking about Christmas made me realise that I need to organise some stuff in advance this year - NO last minute stuff which is my usual way of organising Christmas.
If I'm not lifting or stretching for a minimum of 6 weeks I need to get some stuff underway.

Thursday, 7 October 2010

I have heard......

nothing as yet.....

No calls from the admissions department to advise me of ANY new date yet.

My pen marks on my tummy are wearing off now - the shiny protective sticky plaster is long gone and I've now resorted to colouring myself in each day :-))

I'll ring them tomorrow and see if they're aware of any update to my surgery plan.

I did receive a really lovely, totally unique gift this evening which deserves it's own post. Much more news on that tomorrow, maybe even a video if I can do one that shows this off to it's full effect
(No-one tell Loretta - make her wait...LOL) :-)))

UPDATE: Friday 8th Oct

I contacted the admissions department and asked if there was any date for my Op. I spoke to a different lady - the usual one, P, was apparently out of the office for lunch for another half an hour.

So after giving her my hospital ID number she looks me up and says:

Her: Oh yes, I've found you - it says here that you cancelled your operation because you felt a bit unwell

Me: No, the hospital cancelled my operation because there was no bed for me AND it worked out okay because I had developed a cold and the Sister said I wouldn't be admitted

Her: Yes, but we did tell you that your operation was back on again the following day

Me: Yes, and I still had the cold plus hadn't had time to prepare properly

Her: Oh dear. There's no new date here so we'll have to ring you when we know something

Me: Any idea when that might be?

Her: No sorry, no idea at all. We'll ring you when we know something.

So that's that then I guess. Sigh.....I have no idea how I'm supposed to remain positive about all of this whilst feeling totally in limbo now.

Tuesday, 5 October 2010

What happened next then....?

Okay, as you all now know, after successfully mentally getting myself into the 'right' place (at last) they then contacted me early Sunday afternoon and said 'Sorry, no bed so your op cannot take place this week'.

I also discussed the fact that I still had a cold with Sister J who telephoned and she said if I'd arrived there with a cold they would have sent me home without any hesitation for two reasons - my own safety during major surgery and afterwards (risk of chest infection/pneumonia) - also the safety of other patients on the ward who have seriously reduced immune function following their own surgery.

Monday morning Rab and I go off to do some things and we are out of the house from about 10am until approximately 2.30pm. By the time we get home there are 3 missed messages on the landline and a further 3 on my mobile (which I'd left at home on charge)
1st message - Hi Carole, could you give admissions a ring please. Many thanks'
2nd message - Carole, can you contact me about your admission please, this is quite urgent
3rd message - I need to speak to you now about your admission. You must now contact me immediately'
Similar messages left on the mobile....

So at 3pm I rang and said 'What's the problem and the urgency?'....
Answer 'Hello Carole, the surgeon wants you to come in now, as in, right now'....

I said that wasn't even a possibility as:
  • they had cancelled the previous day,
  • therefore my fortisip drinks (that were the previous week apparently so essential) to aid my recovery had not been taken,
  • the pre-op drinks had also not been started (again 'essential to aid recovery'),
  • the bowel prep should have been started by breakfast time and it was now late afternoon,
  • my son had been informed the operation was not taking place now this week,
  • and I have a lingering cold, blocked sinus' and headache and Sister had said I would be refused admission

Her answer?
'Well, Mr S wants you to come in right now for your operation tomorrow morning, he's not at all happy that we cancelled your bed and he wants you here. He will over-rule the Sister if necessary'...
(hmmm, not happy about that considering that Sister J was considering my safety and that of others - this now feels like a 'convenience exercise' e.g: you need to be here because his time is booked and your safety comes second to that)

My answer 'That's a shame, someone should have ensured that my bed wasn't cancelled then as right now I've moved into 'next time' mode and like I said I have a cold and nothing has been done that needed to have been done to ensure my welfare'

I felt so bloody stressed because firstly I'd got myself prepared then was told not possible this week and now being told 'back on again' as though it was for a minor op involving a 'local' not major 8 hr surgery involving a 'general'

They had me there at the hospital for my pre-op assessment two weeks before and as you know, it took from 10am to 3pm and left me completely overwhelmed with reading information and health information that was to be adhered to, so that my recovery could be as smooth and easy as was possible.
During this it was stressed to me over and over again that all the pre-op stuff was absolutely so essential to ensure complete recovery as quickly as possible - now suddenly it's all changed to 'None of that matters, just get yourself in here now' ....
Hell 'NO!'.....

So, I'm still here at home, and I'm now waiting for a new surgery date after I've shifted my cold and been given enough time to do the essential pre-op preparations.

The lady in admissions wasn't 'able' to give me a new date apparently - so I said 'That's fine, ring me when you sort it all out then'...

Trying to stay calm and in control of things only works when everyone works WITH you to ensure that happens.

Sunday, 3 October 2010

Update on Operation

My operation has been cancelled for this Tuesday...NOT because I have a cold, but because there is no bed available for me.

I now have to ring the admissions department tomorrow morning and reschedule.

Will let you all know when the new admission date is.

At least it gives me a few more days to completely shift this annoying cold. I guess it was just meant to be this way.