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..

Monday, 28 February 2011

Doesn't fit our criteria...........

Since I've been at home more during the day, I've realised exactly how many 'cold calls' I really do get during a single week!
They go through stages, either selling mobile phone contracts, or 'have you had an accident that wasn't your fault' type legal stuff, or more recently 'life insurance'.

I've answered at least 8 calls now from the same company over the past 3 (working) days and it's becoming boring now. So tonight decided to go along with it and see what they'd say (instead of my usual 'No thanks, not interested').

So the phone rings, around 8.30pm - like you'd even WANT to discuss life insurance at 8.30pm if you'd been at work all day - and I answer and play along.

Cold caller: Hello, I'm not going to try to sell you anything, I'm just going to ask you a few questions and see if I can help you reduce your life insurance payments (ask me questions? Why? If you're not going to sell me anything hmmmm).....

Me: Umm, I'm not sure you can help me really

Cold caller: I may be able to help you pay less to offer your family complete protection, if I can just take a minute of your time I may be able to help you sleep easier knowing you've done your best to protect your loved ones

Me: Okay then, away you go

Cold caller: confirm you are Carole, this is your address, this is your age, do you have any dependent's, how much do you currently pay, which company (all of which takes longer than a 'few minutes' of my precious time, as she's still chatting away in-between about 'helping me to help my loved ones')
Then, crunch time......do you have any problems with your heart?

Me: No, none

Cold caller: Do you have cancer?

Me: Yes

Cold caller: You do have cancer? Really?

Me: No, I made it up.......(sigh)...Of course I have cancer, it's not something you joke about generally eh?

Cold caller: Ummm, ahh, ummm, I'm afraid you don't fit our criteria, sorry about that

Me: Hold on, I thought you wanted to help me protect my family? I thought you cared? What's the point in offering life insurance to only healthy people? You really really wanted to help me 5 minutes ago, what better way than to give me life insurance.

Cold caller: (now embarrassed) I, um, I don't really know what to say except that we don't insure people who are possibly, likely, to have a shorter life....(can tell by now that she really wants to end this conversation, quickly - so I carry on :-)....)

Me: I thought insurance was about 'risk' and 'offsetting risk'? Surely you insure healthy people knowing that they are likely to live longer and therefore you can afford to insure people like me, their payments will cover me. So, how much will it cost me per month?

Cold caller: I'm really sorry, we can't insure you, you just don't fit our criteria.

Me: What's the criteria then?

Cold caller: Well, you can't have cancer and get insured with us

Me: Why not? My surgeon doesn't know if I'm going to die so why should your company assume that I will

Cold caller: I understand what you are saying but you just don't fit our criteria - sorry....

Me: How can you have a criteria for selling me insurance when your opening words to me were 'I'm not going to try to sell you anything'?

Cold caller: Well, we don't actually sell the insurance, we drum up the interest and pass it on to the sales people tomorrow - but unfortunately you just don't fit their criteria

Me: Good! Then just stop bloody phoning me all the time then.

Wonder if I'll hear from them again tomorrow :-))

Tuesday, 22 February 2011

Blood Test Results & Beans and Pulses :-)

Today I went to the GP to get the results of my recent blood tests.

Good news is that my Vitamin D level is 'very good'. In fact the GP said it was the best levels he'd ever seen in ANYONE in this country! Yay, I have good Vitamin D levels :-)

Haemoglobin levels were 'a bit low at 11'...told him they dropped to 4 after surgery (hence the blood transfusions) and then stabilised at 11.5 a few days after.
After hearing that he feels that 11 is probably normal for me - taking into account a transfusion only pushed them up to 11.5

My CEA level was 5 prior to any treatment commencing - he confirmed that it is now 3.7....

Soooo, following major surgery and removal of the tumour it's dropped by only 1.3 which is 'disappointing'* ......his words - mine involved the F word rather than *disappointing*

However, we had a long chat and he said that because they (hospital) didn't do the CEA marker after surgery he has no idea what he's comparing this current test to -his theories are as follows:

could be that my body is still adjusting after surgery;

could be that I have a higher natural CEA level (which made little sense to me because it only went to '5' with a stage 3 tumour present);

could be that I'm one of those few people who do not show accurate results for cancer in CEA marker tests (although it's fairly reliable it's not set in stone which is why they don't use it for screening purposes);

could be that there's still cancer somewhere in my body.....

So, lots of could be's but no definite answers yet.

How do I feel about this? Okay actually - I'm thinking that we test again in June and see what's going on. Now I've got a level to compare to we can see what's happening (or not happening) in a couple of months time

Until then, don't ask me if I've still got cancer because the answer will be the same as last month, truth is I don't know - and neither does my GP (and the hospital definitely can't know because they've not seen me since December and won't be seeing me until June)

Anyway, what other things have I found out for sure recently?....Well, I know that Broad Beans now give me an awful stomach ache....Green Beans make the stoma fart (a lot!)....Baked Beans are fine (amazingly)...Puy Lentils give me a pain in the whole colon, Green and Red Lentils give me no problems at all....Lentils, nuts, seeds pass through your system exactly as they enter your body - in other words swallow a whole peanut by mistake and you will 'find' the same peanut later :-))
Actually that last bit about the peanut made me think....they tell you to eat nuts because they are full of protein and some contain selenium HOWEVER if they pass through your body exactly as you eat them, they don't break down at all, then HOW does the protein/selenium actually get into your system to provide you with any health benefits?
Answers in the comments section please :-o)

I've had a pre-assessment with the Counsellors and am waiting on a date for the sessions to start. He's trying to organise around the 3rd week of March.
Some days I think I don't need to see a Counsellor at all, other days I know that I do....Is the inability to make a decision dealt with in counselling? Lol :-)

Apart from all that, my lovely nurse J is back YAY!...she checked the wound and confirmed that it IS healing well - although still not healed it IS on the right path.
I definitely still have nerve damage in the posterior area - some parts are numb, some parts are sore & sting, some areas ache when I sit...
Sounds weird to talk about having an 'ache' in your bum, it's not a place you would normally get an 'achy' pain - if you know what I mean?.... When did you last say (people with bums this is for) 'I've got such an ache in my bum?'...See what I mean? It's not 'normal' to ache there...:-)

Moving on....chatting with J my nurse yesterday for a while after she checked the wound and she asked if I'd like to see the photo's of the friends wedding that she went to (for her 2 week holiday when she went away and LEFT ME with 'M').:-)))
So sitting looking through Face-book with her and see a lovely bride, gorgeous little bridesmaids, J was Bridesmaid too - and then the best man...
J tells me he's her very best friend and such a lovely man - I said "I know, he was my Anaesthetist, B"...Small world eh :-)

Now I know he'll get my message of thanks for his help and caring during my time in hospital.

S'all good - much luv to all xxx

Thursday, 17 February 2011

Trinity Hospice Fund Raising

As you know I set up a fund-raising page on 'Just Giving' to raise necessary funding for my local hospice, Trinity Hospice.

Initially I set my target at just £200 - today that target was reached and I just want to express my thanks to everyone who has donated so far.

Each pound makes a difference to them, especially as they only receive about a third of their funding from the government. As we know, cut backs are currently taking place and it is more than possible that even this third may well be reduced in time - therefore fund-raising becomes even more necessary for such a worthy cause.

Today I have adjusted my target to £300. If you meant to donate but haven't done so as yet, please remember that every penny is appreciated....help me to reach my new target of £300 if you haven't yet donated and won't miss a pound....

Thank you to all who have and those that will :-)

Monday, 14 February 2011

Three months post surgery, so why am I not 'better' then.....?

Now it's time to talk about me again....I've sort of been avoiding this until I'd spoken to my family in depth because it's not something I want them to read via my blog first.

Since my surgery, and even before my surgery, I was managing to keep on top of things and convince people that despite all the crap (deliberate pun) I WAS coping really well, I tend to joke my way through life at the best of times but it's a cover up for how I'm really feeling.
Since my surgery I literally feel as though I've been hit by a steam roller, flattened into the ground and left for dead!

I saw my GP last Wednesday and we had a long long chat - lovely man. He said that he feels that now is the right time to admit that some counselling sessions will help me through the next bit of this journey. I agreed.
It was something that had been offered way back around last May but I resisted and decided I could sort myself out - but the truth is, I can't...and believe me, I have tried.

My GP feels that the combination of my struggle to get results reported, plus the continual ongoing pain from the wound area that hasn't healed is just a recipe for disaster. I cried, he listened and he told me that he feels that a weaker person would have been on their knees by now after what I've been though.
Now you see, this is actually weird for me to hear because I honestly think I'm being a wimp and that there are so many people worse off than me.
I find it hard to view myself as 'strong' or 'resilient' I'm just someone that HAD to find a way to deal with cancer and that doesn't necessarily make me a 'strong' or 'brave' person in my view...and although I've been sort of dealing with it all, I've not managed to see the light at the end of the tunnel yet.

A large part of the uncertainty has been the continual struggle to get results confirmed by the hospital - I finally managed last week to get my PRE treatment CEA levels (which were '5') and then when I asked for my POST surgery results 'Sorry, we didn't do them'...
WHAT the F***!
How am I supposed to relax and start feeling confident that you lot did 'get it all' then?
How am I supposed to 'move on' when you can't tell me F**k all really?
I still haven't had the post op path reports or received ANY other test results in writing - everything has been verbal and only when I've pushed for answers continually.

I'm angry with my post op care, (lack of results being confirmed) I'm angry that despite doing all they said, my wound is still so bloody painful, I'm angry that I'm still exhausted most days and I'm angry at myself for being angry.
So in short I'm just angry and I don't know what to do with this anger or how to stop it.
So counselling is the route I'm now going to use to see if I can reach the light at the end of that long tunnel.

My GP arranged to do my CEA levels last week for me - and he's happy to do them every three months (for as long as I want) as he feels that it's way too long to wait until June.

He also confirmed that he personally is in 100% agreement with me (and my Oncologist) that there isn't necessarily a huge benefit in doing adjuvant Chemo with rectal cancer. It's the luck of the draw really - some people it works on, others it doesn't so he is happy that on this one I made the right decision for me.

We discussed my symptoms:
Are you sleeping okay at night?.........No
Are you feeling your energy levels rising? .....No
Do you feel that you are coping with day to day things....No
Are you irritable and stressed at times?....Yes
Are you noticing an increase in your appetite?...No
Do you feel okay one minute then very sad the next?...Yes
Are you prone to tears when alone?...Yes
Are you avoiding social situations?...Yes
Can you get through this without intervention now?...No
Do you feel suicidal?...No

Therefore we decided that a batch of sessions will be useful. I get my results for my CEA tests and other blood tests on the 22nd February. Maybe then I'll feel a little clearer about things but right now I'm living in Limbo-land and it's not the best place for me (or anyone else living with me either)!

Funny thing is that before the surgery I would have thought it would be the colostomy that pushed me into the direction of needing some counselling - but it's not. The one thing I don't need to talk about and don't feel depressed about is that - strange how things turn out eh!

Much luv to all and as always thank you for the ongoing support xxx

Friday, 11 February 2011

Algeria moves to stave off unrest......

Following on from the recent revolutions in both Tunisia and Egypt, who is next?

Rab and Dj were thinking about a week in Algiers during the half term holiday - for now, we've decided that it's not an option.

Could Algerian's stand against their government in the same way that Tunisians and Egyptians have recently done? Unlikely as the military there really do control things and unlike Egypt, would have no real qualms about shooting the people.

It has not been widely reported here in the UK that over the past few months at least 12 Algerians have set themselves alight in protest at the government oppressions inflicted upon them - it has not been widely reported that during their last protest, in January this year, 5 were killed and over 800 injured.
Whilst the world looked at Tunisia and Egypt, Algerian's were killed and injured but nothing was reported.

Tomorrow a march is planned in Algiers, the capital city. Demonstrations/marches are banned by the government - currently more than 20,000 additional police/military personnel are being drafted into the capital to assist the 10,000 already in place. Transport is being cancelled in an attempt to stop people attending.....

Will the march take place?
Will people lose their lives in an effort to better their living conditions?
Will the world notice this time... or will this be kept under wraps again whilst the world celebrates the downfall of Mubarak?

Update....2:40pm Twitter is buzzing with reports of the role of women in today's protests in Algiers, with some saying that police are tageting and arresting women. There are several photos of female protesters being hauled off by police on the wires.

All pictures from Al Jazeera - English

Monday, 7 February 2011

Happy Birthday Dad....76 Years Young :-)

Today is my Dad's (Paul's) 76th Birthday

I know you'll all want to join me in wishing him a Happy Day :-)

Last night we took mum and dad out for a meal - which I'll post about later today, for now I just want to say

Dad...Have a lovely day xxx

Friday, 4 February 2011

Just a Quick Rant........

Today I just need to vent.....I know you will all understand - unlike some of the medical professionals I'm currently dealing with......

My wound is sore, still constantly bleeding lightly and the skin around it is hot, itchy and very uncomfortable - again.

My lovely nurse, J, has gone on her holidays now for two weeks - I last saw her on Wednesday and she has booked me back in to see her on the 21st when she returns.
This mean for the next two weeks I have to have yet another person poking me around and asking stupid questions...(can you tell I'm getting pissed off with all this?)..

So, today I go off for my appointment with the new nurse, M....I'm feeling tired and fractious before I even get there so not the best of days really.

She greets me with the following:

M - Hello...where is the wound on your finger?

Me. My finger? Which finger?

M - Haven't you come to have your finger dressed then?

Me - No.

M - Then why are you here?

Me - Haven't you read my notes? It's all in there!

Then I burst into tears and have a rant about how I'm so sick and tired of having to go back to bloody April every single time I go round there and no-one ever seems to know what's going on with me.
(I had the same problem with the last two GP's I've seen there as well...it's always the same 'Why did you have this surgery? When did you have this surgery? Did you have Chemoradiation? Why aren't you healing? Have you still got cancer?.......I'm SO friggin sick and tired of having to go back over and over it all time and time again)

Me - (taking deep breaths first) I have a rectal wound, I was diagnosed with Stage 3 rectal cancer, My operation was called an APR, I had my operation in November, the wound has opened since the stitches were removed and that's why I'm here. My finger is fine...

M - Why hasn't your wound healed then?

Me - Aaarrggghhhhh..........(roll on 21st February - by which time I'll either be committed to a mental institution or dealing with my own wound).

That's it for today...tomorrow will be better :-)

Thursday, 3 February 2011

Receiving Nice Mail....

Recently we've really had to review our finances and I tend to dread the post arriving - just in-case it's yet another bill :-(

Sometimes however you receive nice mail and I really can't tell you how much it helps.

I've received lots of cards, flowers, vegetables, home cooking, lovely smellies, a talking teddy bear, (Yes, you did read that correctly - and he's lovely), comments on my blog and good wishes from so many people since my diagnosis.
All have made a difference to how I feel about this mess I've found myself in.

Since I've been off work sick, my work friends Hazel & Christine have continued to send me regular cards just to say 'Hi - keep going' etc and it means such a lot to me.
I have 'fears' about returning to work as I've been off for so long now - and thinking I'll be feeling like the 'new kid on the block' again after all these years of working there - but they've continued to make me feel that I am still a part of the team and this will help me so much when I do return.

Today I received two cards, one from the girls at work and one from my lovely sister.
They couldn't have arrived at a better time as today I'm sore, bleeding again, uncomfortable and feeling like this bloody wound is always going to be a problem (I *know* it will heal eventually but it's such a drag at the moment).
Yesterday it was feeling a little better, today back to square one again :-(

But how can I continue to feel crap when I get such lovely mail (*and NO bills today either) :-)

Thank you Hazel and Christine for this lovely card below

And Thank you Sis for always being aware of when I need a lift and letting me know that despite being SO far away from me physically, you're still with me all the way - love you loads too xx
People often say it's the little things in life that matter and that is so true.
A card, a call, a text, an email, a comment on my blog, a long chat with the lovely Tony last night - it all helps to keep me motivated.

So, a big thank you to everyone that has me in their thoughts. I just wanted to let you know that it really does help.

Tuesday, 1 February 2011

Be Clear On Cancer Campaign.......


The Department of Health have just started a 7 week pilot scheme to attempt to make people more aware of Bowel Cancer. This pilot is initially going to be aimed at two areas in the UK, the East and South West and if they feel it was successful they will then roll it out nationwide.

I've decided to feature it here on my blog for obvious reasons.

Health Minister Paul Burstow said:

“No one likes talking about their poo – it’s embarrassing. But if we see something different and tell our GP it could save our life.

“Early diagnosis makes a huge difference to cancer survival rates and bowel cancer is one of the biggest killers.

That’s why the ‘Be Clear on Cancer’ campaign uses simple messages to make people aware of the early signs of bowel cancer and to give them the confidence to talk to their GP about them.

“To make sure we get it right, we’re testing this campaign in two regions and, if it works, we’ll roll it out nationally.

My only 'gripe' with this campaign is the age range it is targeted at....currently they are aiming to get more over 55's aware but I want EVERYONE to be aware.

The simple facts are this - Bowel Cancer affects approximately 38,000 people per year in the UK.

75% of people fall into the over 60's age group which means that approximately 9,500 people may feel 'This doesn't affect me, I'm too young'....Harsh reality is it COULD affect you so if you have symptoms you need to get them checked.

I was 49 when diagnosed with Rectal Cancer, Stage 3 - my surgeon estimated that my cancer had been growing, silently without obvious symptoms, for anything up to 8 years...that made me potentially around 41 years old when it began. Screening me at 55 would simply have been way too late.

There is no plan to screen earlier but if people notice symptoms then they MUST contact their GP and insist on being checked over.

My message is simple 'If in doubt about it, shout about it'......

If you have any of the higher risk bowel cancer symptoms listed below for more than six weeks you should visit your GP:

  • Bleeding from the bottom (rectal bleeding) without any obvious reason. If you have other symptoms such as straining, soreness, lumps and itchiness the problem is likely to be piles but it’s still important to get this confirmed by your GP
  • A persistent change in bowel habit especially going to the toilet more often or experiencing looser stools for several weeks
  • Abdominal pain especially if severe
  • A lump in your tummy
  • Weight loss and tiredness (signs of anaemia)

Please remember that most of these symptoms will not be bowel cancer, but to rule it out you must first visit your GP.

Reliable information available from www.beatingbowelcancer.org

Finally, if you're in the East or South West areas - let me know if you've seen this advertising campaign yet and what you think about it - ie; is it effective; the right message; enough information; too much information; embarrassing; all comments welcomed......

Look after those bowels and 'if in doubt, give the GP a shout'.

I'm Just Not Memorable.........:-)

Yesterday I went to the GP nurse to get my wound redressed.

Whilst waiting in the surgery area a lady entered and approached me asking if I knew where a particular street was in the local area. I had never heard of it and directed her to the lady on reception who proceeded to help her - she had also not heard of it.
Anyway, then it was my turn to see nurse so off I went.

Ten minutes or so later I left the surgery and heard this voice saying 'Excuse me, excuse me, do you know where this street is please?'...
I turned around and it was the same lady from the GP surgery!

I smiled and said 'Actually you already asked me a little while ago - sorry I can't help but maybe you could pop into that shop over there and ask them?'
I went on my way whilst she rushed off across the road.

Literally two minutes later, footsteps running behind me and the same (very breathless by now) lady ran up and said 'Excuse me, do you know where this street is please?'....
At this point I laughed and said 'No, sorry - I've no idea' - she rushed off in the opposite direction.

Then in the afternoon I went out to pick something up from the local shop and was approached by one of those Charity workers who lurk on the high street trying to get you to sign up for regular payments by direct debit.
He smiled and said the usual 'Can I just take a few moments of your time?'...I stopped briefly and said 'Sorry, can't help you right now - I'm off work sick and have no money to actually feed us all currently, but good luck anyway' then walked on.

Two minutes later I returned past him and he jumped into my face (again) and said 'Can I just take a few minutes of your time?'..I laughed and said 'You just spoke to me a few minutes ago'...he looked puzzled and said 'Really!...I don't remember you at all, sorry'.

Then as I went into the supermarket an elderly man approached me and said 'Can you tell me where the main line rail station is?'...I directed him, he thanked me and I entered the store.
Ten minutes later when I was leaving the SAME man approached me AGAIN and asked ...yes, you've guessed it.....
'Do you know where the main line station is?'...I took a deep breath and said 'Yes, it's where I told you it was, ten minutes ago' (with a smile)....
He looked at me really puzzled and said 'I didn't ask you before, I only just decided to go there a little while ago'

What did I learn from all this?........I learned that I obviously have a very approachable face but not a particularly memorable one :-)
Still laughing about it today