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..

Saturday, 29 January 2011

Swings and Roundabouts.....

The reason for the title is my mood swings really.

One minute I'm feeling fine, starting to feel like I'm getting back on top of things again and the next I'm ranting about something so minor it even feels stupid to me - however not stupid enough to actually stop me from doing it :-(

Rab said to me the other day 'WHAT is wrong with you'? I didn't answer because the truth is I simply don't know what to say....so I pretended I was deaf instead!
Dj said (thinking I was out of earshot)... 'It's the cancer Daddy, it's messed with her head I think'
Oh Dear! and how right he is.

I had to call him back the other morning because I'd yelled at him for something (something so unimportant that I can't even remember what it was now)...he left the house to go off to school in tears. I'm such a bitch sometimes.
But I did call him back, apologised and gave him a hug.
His response 'It's okay, I get it and you don't need to say sorry' :-(

Even my beloved Dizzie cat has taken to sleeping on the floor by the side of the bed instead of on the end by my feet. Bad vibes all round eh!

So, I'm working on trying to remain calm on the outside despite what's going on inside. I'm definitely working on trying my best not to keep snapping at Dj constantly. None of this is anyone's fault and I need to remind myself of that, no matter how pissed off I feel about things at times.

Okay, now for some positives......

I finally got the Employment Support Allowance sorted out (thank you Shents for the advice on that).
It was a total frustrating battle with red tape and authority, missing letters, snidey attitudes and incompetence - but I eventually received the payment last week, which went some way towards sorting out our massive overdraft. So that's a positive.

Another positive is that my rectal wound is healing - still not 'healed' but at least on the way now. The nurse has said it's looking much better and she's hopeful that it will heal completely within the next few weeks.
It's still uncomfortable to sit for periods of time in one position, but not as bad as it was a few weeks ago.

I have some appetite most days - which is good because I like food :-) It was becoming totally boring not wanting to eat anything and having to force myself.

Another positive for now is the Arsenal match the other night and 'Que, Sera Sera, Whatever will be, will be, We're going to Wembley, Que Sera Sera..........:-)) Yay!

My final positive thought at this point is 'I probably maybe haven't got cancer in my body anymore'

Negatives are:
Sleeping patterns are still all over the place

Still tire really easily and my energy levels are not where they should be

Mood swings which affect everyone, including me!

Numerous joint pains and the nagging pain in the rib area is still hanging around. They checked my lungs but they showed as all clear in September but the nagging ache continues. No-one knows why

I have more grey hair than I had a year ago

And a final negative 'I probably still have cancer somewhere in my body'

See what I mean about the conflicting moods?
One minute I can think 'I have got rid of it' and then the next minute I'm thinking 'It's still there, hiding and waiting to be found again'...

Oh well 'Que Serra Serra' eh

Much luv to all and if you're one of the people I've been snappy with, I'm sorry :-(

Tuesday, 18 January 2011

Tea with the Queen...

I'm dedicating this particular post to Dj.

When all this cancer stuff first started going on Dj was 10 yrs old. He transferred to Secondary School in August amidst all the hospital tests, chemo, radiation, scans, appointments, me in severe pain and uncertainty. He had just turned 11 when he started....

So with all this going on at home, he could easily have played the cancer card 'Can't cope because my mums got cancer, Can't do my homework on time, Can't concentrate, Can't behave, Can't cope with the transition from primary to secondary, Can't settle'........ but he didn't do any of the above.

He knuckled down, worked hard at primary to get good results in his SAT's and left with an excellent school report then started at his new school in September.

During his first term of being there I was then in hospital for my surgery, this involved huge changes to his routine at home but he didn't miss a single day of school, handed all of his homework in on time, adjusted to his new routine and made new friends and quickly gained the respect of his tutor who recently described him as 'a very mature, sensible and balanced young man who has quickly proved himself as a role model'

Today we received his first term levels in each subject...
(PG = Progress Good; PE = Progress Excellent; PS = Progress Satisfactory; PU = Progress Unsatisfactory)

English PG
Maths PG
Science PG
Art PG
Citizenship PE
Dance PE !!! (Those who know Dj will understand the !!!)
Drama PE !!! (same as above)
Design &
Technology PG
Geography PE
History PE
French PG
Music PG
Education PG
Oh and his reading age is 16 yrs and 4 months now - 5 yrs older than him.... :-)

I am so very very proud of him along with Rab and the rest of the family. He is an example of exactly how not to let cancer rule our lives.

And....now to explain the tea with the Queen title....Okay, okay I confess, it's not REALLY the Queen!
He has been invited to attend a tea party with the Headteacher tomorrow afternoon which is being held in honour of students who have made outstanding effort in subjects (his 'speciality' was Geography).
For each of the subjects listed above, the school choose one child from each year group (a year group contains approximately 200 children) who excelled in that subject and invite them to this special afternoon tea so that the Head can get to meet them and get to know them better. When you've got in excess of 1000 kids in a school, it's fairly impossible to get to know them all well, especially during the first term - so I think this is a great idea.

In addition a newsletter was sent home to all parents and he's so impressed to see HIS name there:
Headteacher Commendations : 'Dj ** Geography - for commitment to the subject and always working hard'

As I said we're so proud of him....and I even forgive him for driving me to distraction at times. I know he's had a lot to deal with but he's proved that life goes on regardless.

One of Dj's main gripes at Primary school was that good behaviour and hard work wasn't recognised anywhere near as often as rewarding those whose behaviour was often less than desirable.
He often used to feel it was unjust when a 'bad' kid got rewarded for stuff that the rest of them did without question each day. Simple things like getting through the day without hitting another child got them a reward.
The children who behaved all the time found it was getting more and more difficult to accumulate enough reward stickers to be able to exchange them for gold certificates, meanwhile they were sitting in assemblies watching kids who generally can't behave or follow easy rules picking up their gold certificates.
He said to me once 'If I was a brat I'd have my gold certificate by now'...I see his point.
I do understand the incentive in rewarding children when they've managed to achieve something (like not attacking 'my' child that day)...however I also felt that you also need to recognise the 'good' kids.

I like that this current school is more into rewarding positive behaviour and recognising hard work - rather than 'improved behaviour'.

I like that my boy is going to tea with the Queen tomorrow (yes, yes...I know...but she is the Queen of the school)

Well done Dj xxx

Thursday, 13 January 2011

Friendships and Cyber Life....

Some times things happen for a reason I guess...this will be explained in a bit.

On Tuesday night I was lying in bed awake for hours just thinking really. Not about me, or the operation, or the stoma or even the cancer - I was thinking about people on a forum and people who's blogs I read or who read mine...
People who are struggling sometimes to get on top of things but always find the time to help someone else...

I found myself thinking about cyber life and how we 'meet' people who make a difference in our lives and how certain people become friends - real friends, just distant ones.

So as I lay there and thought about so many individual people on the forum who go there mostly to help other people - sometimes they even need reminding to update their own threads (ooops! I'm guilty of that at times - I update here and forget about my thread on there)

Tony - continuing his fight after not being free of it for anywhere near long enough. Always on the forum trying to put someone's mind at rest or offer a shoulder. Always there for me whenever I feel I'm going to have a meltdown
Rose - so brave that she avoids saying how terrible she's feeling and still logs on to help other people as often as she can
David - struggling with his treatment but great at seeking out the good days and letting us know about them
Shents - beat the demon and still thinks about others, helping and advising and showing people that it's not necessarily the end of the road
Anne - so supportive to others despite her worries about her own family member.
Graham - been through the mill since retiring for a more laid back and relaxed lifestyle...despite his recent major surgery he's always there for other people, always offers upbeat and positive advice
Fiona - who's been battling to get answers and is unaware of what's next - hard to remain upbeat when you have no definite care plan in place - as yet....but she does remain positive and supportive to others despite her own frustrations
Jadziadax - such a massive support to anyone needing answers for Prostrate cancer - battling the authorities and the system to ensure her dad receives the best care possible - and yet always there for anyone who finds themselves with a diagnosis.
Jolamine - treated so poorly by the NHS up to now - has had to fight weekly to receive basic information and cannot move forward until she gets answers - but still logs on regularly to offer help to other people who are recently diagnosed, frightened and unsure.
Kev - dealing with his own grief after losing his wife but despite his obvious pain has been trying to support other members who have recently lost their partners.

I laid there for hours thinking about these people and also bloggers too....(Steve, Lisa, Chez, Alli, Rose Mary, Paula...and others too numerous to mention).., . I found myself thinking about the friendships that are built online with people who give of themselves when their own problems could easily just take over.
I thought about how what happens to them affects me and others who have formed friendships with them on-line...how when someone is having a scan/test/waiting for a result we are there waiting with them, hoping for the best and dreading the worst.

Then last night I was reading Rose Mary's blog and she had linked a post from a lady called Nancy....When I read Nancy's post it just clicked and I realised that as bloggers we do all form friendships and they are real friendships - just not physical ones.
Many of us will never meet, will never hug or even shake hands - but friendship is not about proximity.

Read Nancy's post here:

Floods and turmoil......

For the past few days I have been watching the developments in Australia with their intense floods and turmoil that the people have been thrown into...so sad - some people have lost their lives, others have lost literally everything they owned and will have to start all over again :-(

In Brazil, the current death toll due to flash floods and mudslides now stands at over 350 (*updated 10pm GMT - now in excess of 400) and they (still) expect this figure to rise dramatically over the next day or so. Again, people have lost everything and will have to start from scratch again :-(

Also Sri Lanka have suffered some extreme flash floods and the death toll there currently stands at around 250, but is fully expected to rise even further. A huge amount of people are now left with nothing except the clothing on their backs and tens of thousands are displaced and without basics like food and clean water :-(

Sometimes we think about cancer, the effects and after effects and it becomes consuming, but around the world - around all of us - there are other disasters taking place on a daily basis.
So today I'm not thinking about cancer I'm thinking about all the things that people have to deal with in Australia, Brazil and Sri Lanka and other less publicised places.

A year ago Haiti suffered the terrible earthquake that took close to a quarter of a million lives and people there are now still living amongst the rubble that fell to the ground at the time of the quake..One year on and they are still battling a Cholera outbreak, disgusting living conditions and disease/illness/shortage of food and shelter.

I sincerely hope that all these people who have experienced natural disaster can find a way to rebuild their lives - as soon as possible

Monday, 10 January 2011

Flu recovery......

Today Djamel has recovered enough to return to school. Although he's still on the 'weak' side and has little appetite I felt that getting back into a routine would be the best thing for him....at least the cough has now subsided enough for him to get a decent nights sleep!

Sarah is much better although still stuck with the awful cough - and at least I've been able to see her over the past few days instead of her being stuck in bed at mum and dad's.
So far, mum and dad have both managed to avoid it.

My brother is apparently quite unwell still - along with his two boys. They've all struggled with the cough mainly and as we all know, when you can't sleep you can't recover properly. I'm hopeful they'll all be on the mend shortly. Get well soon Eddie & boys xx

Sarah and Manolis will be going back home to Greece on Wednesday. She's been here since the end of November now so I can't be sad that she's leaving - although I am - and we're hoping to be able to get over to them in the summer this year.

It's been lovely to have some time with her and she's been so helpful to both me and Rab whilst she's been here.
Rab obviously had to go back to work just after I was released from hospital so for the first week Leanne and James took time off work to look after me and things at home...
Then the following week Sarah arrived in the UK. She was coming over daily, sorting out lunch/dinner, ironing and doing housework for us - and keeping me company, coming to hospital appointments with me, listening to my various moans and groans and encouraging me that it WILL all start to get better, bit by bit.

I'm so grateful for the time I've had with her (especially that they were both here for Christmas) and although I will miss her so much it's time for her to go home now and get on with her own life again.

Rab's still doing most stuff at home - ironing, cleaning, changing beds etc as I still can't do anything much physically demanding - but I've started to do bits and pieces now that would have been impossible just a month ago...I'm very grateful for all the help we've had since this started - couldn't have got to this stage of the game without the support of my family and friends.
Thank you all :-) xxx

Bum update !!!

This post contains detailed information about my bum - so if you don't want to know, then don't read it....I won't be offended :-)

As you all know my rectum, anus and 15 inches of colon was removed during my op along with the stage 3a tumour and one impacted lymph node.
My surgery was carried out via keyhole operation which makes the healing of the stomach wounds much simpler. I can confirm that my stomach wounds - 3 small incisions - have all healed perfectly well and are now nothing more than very small light marks on my tummy....however the APR wound (I am stitched from the top of my bum just under the tail of my spine to directly underneath the vaginal area) is not healing - yet.

When the stitches were removed the surgeon was concerned about an area near to the end of the stitches, close to the vaginal area, but this has healed perfectly now. However an area that WAS stitched, and holding, no longer is. The part that has decided to be stubborn is about 3 inches from the tail of my spine and has opened up to about 2.5 cms now - it is also very deep and therefore being packed with the Aquacell treatment.

Over the past week or so the wound has become really sore and 'angry' although according to the nurse 'not infected'...I have my doubts about the 'no infection' part of our conversations as internally feels very 'hot', sore and hard itchy lumps in places - although not directly on the stitch line.
The nurse has debated that it's hot and itchy due to the natural healing taking place - but as I've recently pointed out the natural healing is not doing so well, considering the open part of the wound was approximately 1.5cms and is now 2.5cms......I find it hard to get my head around how a wound getting slightly larger is actually 'healing'.

I'd like to say that I'm feeling confident that all will be healed up and feeling fine soon - but truthfully I'm not so optimistic.
Right now, sitting in one position for more than half an hour is very uncomfortable - getting up and down from a sitting position hurts and I have to be careful how I move (any sudden movement is agony)...... I'm bleeding daily from the wound and although not excessive it's enough to require redressing in-between seeing the nurse twice a week (hence I do my own redressing on the in-between days).

Before the op they did discuss with me the possibility that the wound could break down after the surgery due to the way I'd burned during the Radiotherapy treatment. It affects how the skin repairs apparently....I was concerned but felt that as others things had gone wrong with my treatment plan THIS would be the one thing that went right (*or at least 'okay')....but it seems it's not to be.
My job involves sitting at a desk in one position for hours at a time - something I'm totally struggling with right now therefore this puts my plans to return to work as soon as possible onto the back burner again. I feel like it's still one step forward and two steps backwards.

Right now, onto the stoma and colostomy. This is all fine, healed well and all stitches have now been eaten up by my body naturally :-) .......I had a few stubborn stitches which the stoma nurses were going to remove for me but they've now disappeared themselves.
The care of the stoma is easy and mentally I've moved on from disgust to disinterest...I now view it as 'permanent' and therefore not worth wasting time feeling stressed about it.
As I said in an earlier post I've been sourcing different bags and once I find one I'm totally happy with the stoma situation is more or less done and dusted.

I realised that the colostomy wasn't bothering me in the same way when I answered a post from someone on a cancer forum who was feeling really concerned about their pending surgery and the permanent bag situation - when I read back what I'd said to this person, I realised that I meant every word of it and in all honesty, 2 months down the line, the colostomy is no longer a huge issue for me.
Yes it's life-changing...yes it's 'odd'...yes it's different but it's not as awful as I'd decided it would be before surgery.
It's the fear of the unknown, the thought of being 'different' and not knowing what to expect that freaked me out - as I'm sure it does for a lot of people. I no longer care much about the bag - it's part of my day to day routine now....

However - the wound is a big deal and I want it to heal... and until it does I can't even think about getting back to normal day to day things and I can't move on.

I don't want my every thought to be about bloody cancer, tumours and surgery but until this last thing is done I feel I'm stuck being a patient when what I want is to be as normal as I can - at least until the next scans and check up in June.

So, that's the current 'bum' situation - for all who have asked and wanted to know :-)

Saturday, 1 January 2011

Fighting the Flu Bug.......

First post of the New Year - Happy 2011 :-)

Our year here kicks off with numerous people struggling with flu symptoms. My sister Sarah and her partner Manolis have both been laid up for days now, along with Djamel who's really suffering at the moment.
He usually shakes off bugs pretty easily but this one is proving to be a bu*ger at the moment.

He first went down with what seemed to be a tough cold about 10 days ago but then he managed to shake it off Christmas Eve....yesterday he woke up full of the cold again, along with joint pains, headache, vomiting, temperature and awful cough. Sarah has been kept awake all night long with the cough...so far my parents seem to be avoiding it.
I developed symptoms on Christmas day and felt worse on Boxing day but I've managed to get rid of it without developing the additional symptoms (joints/temp/cough)....

Funny thing was that everyone was worried that if I got it, I'd really struggle due to the recent surgery - but it's been the opposite way round. I recovered before anyone else - now who wants to say my supplements don't work?

This flu thing is spreading like wildfire here in London and I presume it's pretty much the same for the rest of the UK right now? Just about everyone you speak to had someone in their family struck down with flu either just before or during the Christmas holidays....I spoke to my brother earlier and he's also got it now along with his two boys....

Hope everyone gets well soon.