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, 30 September 2010

Reading Material ...

Starting to get my bag organised for my 'trip' next week (trip - sounds better than operation eh)...

I thought I'd just quickly share with you all my reading material for my time in hospital...

I'm taking three books with me in the hope that I'll be comfortable enough to just relax and read in-between attempting to walk up and down every so often...

My books are:

My Shit Life so Far - Frankie Boyle
Shit My Dad Says - Justin Halpern
It's not Over till the Bag Lady Rings - Ian Spratley

Seeing any pattern here :-)))

I'm struggling to decide what I actually need in my 'trip' bag...packing for a holiday is much easier for some reason.


I have woken up full of a cold :-((

My throat is sore, my nose is completely blocked, I'm sneezing for England and I have a bloody temperature.....arrrgghhh!

Am now going to 'up' all my immune support stuff and keep my fingers crossed that I can shake this off in a couple of days or my op will be postponed and I really don't want to have to mentally prepare for this all over again. Going back to bed now to rest and repair myself.

Am fed up because apart from the possibility of having to postpone my op, I had planned a nice night out with Hazel and Christine from work this evening (last supper!).....Sorry girls - I was really looking forward to it but got to prioritise things at the moment.

Rab had this cold two weeks ago and it took him over a week to shift it, Dj went down with it over the weekend and it took him 4 days to get rid of it (he's got a fairly good immune system despite his lack of veggies and fruit) so I'm hoping that as my immune system has been functioning really well lately, 3 days maximum....(she says whilst sniffling into the tissues and sitting here with a stinking headache) :-(

Keep your fingers crossed for me

Wednesday, 29 September 2010

Hospital visit today.......

Today I had to go to the hospital to meet with the Stoma team and after that to meet again with the surgeon
I thought I'd finished with him until the surgery, but they contacted me and asked me to see him again today - wasn't really sure why although I suspected it was maybe because he's still wondering am I actually going to go ahead with this op or not....

So firstly to the Stoma team. This was only going to be a quick measure up ready for next week.
The idea is that you get to have some say in where they place the Stoma, working out where it will be most comfortable, interfere least with your clothing and fit into your lifestyle...
Anyway, the 'quick' meeting turned into a 1.5 hour chat with Anna, one of the really lovely Stoma nurses. I met with her before and she's great - very dry sense of humour, doesn't tell you it's going to be 'okay' and all fine....What she said was:

'It really doesn't matter what I tell you because until it's done you can't possibly get to grips with it, after that it's a choice of who controls who - you either choose to control your Stoma or you let it take over your life and control you'...

She then went on to say that I'll probably not even want to look at it for the first few days - and that would be fine. They will deal with it until I'm ready but she's confident that once I do decide to get on with it, I'll be fine.

We talked about irrigation in the future - at least 4 months after surgery once everything has settled. What that means is that you can irrigate the bowel daily *flush it out* and then you get no waste for approximately 24 hours - depending on each individual persons routine. I like the idea of that but we'll see how I get on.

I also told her I was worried about changing Stoma teams after my discharge from hospital.
Officially I should come under another hospital after discharge due to my home address - but she said she's going to sort it out so that I can stay with them instead.
I said I didn't want to have to go through the whole building a new relationship, going over everything again, with a new team - she agreed that it's all been stressful enough. I feel better about that already.

Lastly we discussed where the Stoma needs to go on me....I'm now marked up and covered in shiny tape ready for Monday...wanna see?

Our last part of the chat was about diet - she told me to ignore the diet sheets and eat whatever I wanted to.
She agreed that moving from a healthy diet to white processed foods would NOT be the best thing for me to do - and as my body is totally used to high fibre food hopefully it'll be fine. We might need to tweak things a bit but she felt that changing too much would be too drastic and probably lead to other problems such as constipation!

Finally our last bit of chatting was about hernias - Anna tells me that 50% (YES! FIFTY percent) of patients end up with a hernia after Stoma surgery.
She explained that this would mean an unslightly swelling, discomfort and probably a further operation to correct - maybe even needing to move the Stoma to the other side of the body.

It was then explained that hernia's develop when people do not heed the advice given about NOT lifting anything heavier than a cup of tea for 6 weeks, no housework, no carrying shopping or attempting to stretch to 'do' stuff, no exercises.
She maintains that hernia's can be avoided if advice is followed to literally do your walking exercises every few hours, rest and leave everything else to someone else.

I have plenty of volunteers ready to help out so I'll behave myself and do virtually nothing for 6 weeks - I seriously do NOT want a hernia and the prospects of a further op or dodgy Stoma.
If I've got to have one, it needs to look GOOD! :-))

Then I went upstairs and had my appointment with the surgeon....He's actually a nice man, he's kind and I know he does actually care about his patients.

He said that he was confident that by taking the antivirals the Shingles virus should be kept under control and therefore shouldn't be a problem with interfering with the healing of the wound - so that's good news.

We then discussed the PET scan again - he said he'd looked at it again in more detail and double checked all results and was happy to say that there appears to be no lymph node involvement (the MRI had showed that there possibly was a few that were affected) - so again that was good news.
Lastly he said he'd double checked the lungs/liver area and other tissues and could see no signs of any spread whatsoever - his words were 'seems to be nicely contained with no, or at least limited, spread'...Again, good news.

Then we talked briefly about Chemo after surgery. I've made it clear that I'm not happy about having further Chemo unless it's deemed absolutely essential.
I figure we can deal with Chemo IF it comes back in the future - I told him I'd rather be poisoned when there is something to poison instead of 'just in-case'...I reminded him that the PET is pointing towards nothing else flying around my system at the moment.

We left it that we will decide when we get together again approximately two weeks after discharge when I go back for my post op checks - depending on pathology reports, margins and whether the lymph nodes ARE actually in the clear.

He also reminded me that I will be monitored for 5 years (blood tests, scans and 6 monthly checks initially - moving to annual checks if the first two checks go well) but will not be classed as being in remission or free from cancer until we get to that magic 5 year marker.
He reminded me that Rectal cancer can be a real 'problem' for resurfacing in other places (liver/lungs) but that we would deal with that if and when it happened - which is exactly why I don't want Chemo for no reason when I may well need it for a reccurrance in the future.

He then asked me how I was feeling about things particularly the Stoma and the surgery - I told him I still don't 'want' the op but I've accepted that I have no real options and I'll be okay once it's done - somehow I'll find a way to deal with it and move on.
He nodded and smiled then said 'You will Carole, you will.....You're realistic, inquisitive, tough and you're brave and I feel you will be coping with this very well before you know it'.

So, that ended our meeting with him assuring me that he's going to do his best possible job on me and all will be well.
Told him it best be all well, and that I'm only trusting him with my life because he's a Greek man and my sister lives in Greece - He laughed alot at this and said 'Then I definitely have to do my best for you Carole'....

And I know he meant it :-)

On the Night.....

Partizan Belgrade vs Arsenal - Champions League...

1-3 on the night....that'll do nicely thank you :-) Roll on December for the rematch at home!

Oh and just for the record, that was Arsenal's first Champions League win away from home in a year. Decent enough result for me :-)

Tuesday, 28 September 2010

Messing with my diet now......Arrrggghhh!

First they are going to mess with my body so I will no longer be able to do 'normal' things such as crap in the toilet like normal people do...

NOW they are going to mess with my diet - which is the one thing that has made me feel better, normal and healthy.

Included in all the paperwork I 'have' to read before my operation is a list of foods to avoid once it's taken place..
Things such as;
Nuts, cereals, fruits, pulses and seeds
Fruit smoothies
Lentil, pea and bean soups
Wholemeal flour including Rye bread, granary bread, chapati
Bran flakes, museli, porridge, shredded wheat
Brown rice
Anything containing Rye and whole grain - including crisp breads, oatcakes

Rice Crispies, Frosties, Coco pops (YUK!) :-(
White Rice :-(
White Flour, White bread, :-(
Tea/Coffee/Cocoa, clear soups
All milk and Dairy products :-(
Red Meat and Poultry
Clear soups

Then onto fruits and Vegetables which along with pulses makes up the main part of my current diet....
Avoid Allowed
Apples Bananas
Apricots Cherries
Berries (all) Citrus fruits
Damsons Grapes
Figs Melons
Mango Strawberries
Pears Nectarines
Plums Peaches
Dried Fruits (all) Pineapple
All currants (fresh and dried)

Peas Potato without skin
Beans Bean Sprouts
Brussel Sprouts Asparagus
Chick Peas Bamboo Shoots
Lentils Beetroot
Okra Cauliflower
Parsnip Celery
Spring Greens Cucumber
Spinach Lettuce
Sweet Potato Mushroom
Sweet Corn Peppers
Turnip Pumpkin
Potatoes with skin Radish
Aubergine Swede
Broccoli Tomatoes
Cabbage Watercress
Carrots Courgette

And they said this was going to be 'simple' and easy to adjust to..."Once it's done you'll be able to carry on exactly as normal Carole"....apart from learn to live with a bloody bag, change most of your wardrobe, buy new underwear, change your whole eating habits, eat white processed foods again, drink coffee and eat tons of dairy and meat....

If this is what they intend on feeding me in hospital I shall definitely come out weighing less than when I went in...all these months working on my diet, regaining weight and feeling healthy for them to feed me White bread and Coco Pops!........ I *don't* think so somehow....

I strongly suspect I will not be sticking to the recommended diet sheet once I escape from hospital. Trial and error will be the deciding factor on my diet - not this sheet.

Also, everything I've read up on about colostomy's says that people struggle like mad with Asparagus, mushrooms, Cauliflower - mainly due to excess gas caused..
Asparagus in particular seems to be a culprit of smelly gas and they stick this onto my 'allowed' list....Bah!

Wait til they find out I'm drinking grass - wonder what they'll make of *that*.....LOL

Monday, 27 September 2010

Great Website and Blog....

Last night whilst browsing around I came across a blog by a guy called Ryan in the US who had been diagnosed with Stage IV Hodgkin's Lymphoma.

His blog is now in my blog list entitled 'I made Cancer my bitch' and it's definitely worth reading - whether you have Hodgkin's or not...

He's also set up an online shop to sell cancer related items. We appear to have nothing like this in the UK (well, not that I can find anyway) and I'm putting the link here to his online shop simply because I think his attitude and his stuff are both great.

Link to the shop

Some examples of the stuff he has for sale below (copied with Ryan's permission)

Also, he DOES ship to the UK and worldwide for very reasonable rates.

Enjoy :-)

Cancer Greetings Cards

Cancer Coffee Mugs

Cancer Fridge Magnets....

On his website, you'll also find other goodies like Sweatshirts, T Shirts, bags AND there's money saving special offers there at the moment.

Go and have a look and see if you can find something to cheer you (or someone else) up :-)

Sunday, 26 September 2010

Reasons to be Cheerful....

As you know, last week I had my pre-assessment half day at the hospital.

During this visit I met with nurse after nurse and had things done like:
  • blood pressure;
  • pulse and heart rate checked;
  • lungs listened to;
  • height (still not shrunk yet - lol)
  • weight (still putting on the odd pound or two - am now about 8st 2lb);
  • blood tests;
  • urine tests;
  • EGC;
  • got measured for the awful looking stockings that I have to wear for a month after surgery to avoid developing thrombosis;

Left with numerous sheets of paper informing me of this, that and the other......I have enough reading material to keep me going right up to admission.

Also provided with:
  • days worth of drinks to build you up before surgery,
  • then other pre-op drinks to have the day before surgery,
  • plus bowel prep stuff,
  • special scrub stuff that you have to shower with the day of your surgery

Now for my reasons to be cheerful title...amongst the numerous sheets of information paperwork is a list of things that can go wrong during my operation - with instructions that it is essential that you read this sheet in full as you will be expected to give your permission for the operation to be carried out and this sheet explains the risks involved.

It's nicely entitled 'What are the potential risks of APR?'.....Sigh :-(

So, what are the risks then?.......
  • Sexual Dysfunction
  • Bladder Dysfunction
  • Pain
  • Phantom Pain
  • Pelvic Discomfort
  • Perineal Numbness/Tingling
  • Perineal Wound Breakdown

There is then another sheet in my pack which states: 'You will only be advised to have an operation when the advantages outweigh the potential disadvantages'
So what are the advantages of APR? .....
"While it cannot guarantee the disease will not return in the future, this surgery can possibly extend life expectancy and improve related pain symptoms that you may be having'

Yeah Okay.....I get the bit about (possibly) extending life expectancy but improving the pain (which I don't have) by possibly giving me the pain from the list of things that can go wrong above seems like fairly shit choices to me.

I didn't even get to list the 'other' risks associated with major surgery in general for you yet...

Common risks following major operations are:
  • chest infection
  • urinary infection
  • excessive bleeding leading to a blood transfusion being required **(see below for more details on this)
  • blood clot in your leg (DVT)

Less Common risks include:
  1. heart attack
  2. blood clot in your chest
  3. leakage from your internal bowel join
  4. wound dehiscence
  5. damage to or bruising of the nerves which control your bladder and sexual funtion
  6. internal scarring that may require further surgical treatment
  7. damage to your spleen which may have to be removed if it cannot be repaired
  8. accidental damage to the tubes which drain from your kidneys
  9. accidental damage to the bowel, bile duct and other organ.

LOTS of reasons for me to remain cheerful then eh :-))

**Lastly - I have been asked to take part in a trial to ensure that if I need a transfusion during surgery I will only receive blood that has been cleansed of CJD traits - that's a bit of a no brainer really...thought about that for all of maybe 3.5 seconds before agreeing.

I then asked her how they choose their trial patients and she explained that they only invite patients who are at extremely high risk of needing a transfusion during their surgery to take part.....
Ummmm great - another reason to be cheerful then - BUT at least I won't end up with Mad Cow Disease afterwards.

Actually I can't believe that they are still using ANY blood that could potentially have variant CJD contained - but apparently they are!
The ONLY blood automatically cleansed of variant CJD at the moment is blood used in transfusions for children.
The logic being 'at least the next generation should be free of this'...(and me too of course) :-))

We then had a chat about lots of other things and she ended by explaining that if I did have a transfusion during surgery they probably wouldn't tell me (?!!) and the way I will find out is when she contacts me to have blood taken about 8 weeks after surgery....

Then she stood up, shook my hand, said it had been lovely to meet me and what a shame I had this horrid disease to cope with and left saying..... 'So I'll see you in about 8 weeks then'....LOL.

Saturday, 25 September 2010

Information about Breast Cancer.....

I have received a message via email from a lady called Sarah about supporting a Breast Cancer campaign in the US.....
This may interest my readers from the US who use Facebook and/or Twitter..

Relevant parts from email below:

I thought you might be interested in hearing about the campaign that Sutter Home is currently working on to help raise money for breast cancer awareness, treatment, and education.

Right now, if you “like” the Sutter Home Facebook page, you can access an application which allows you to add the Sutter Home capsule overlay below to your Facebook profile picture. You can also add the overlay to your avatar on Twitter.

For every Facebook fan or Twitter-er that adds this overlay to their avatar, Sutter Home will donate $1 to Breast Cancer awareness.

You can find out more about the Sutter Home for Hope program here (www.sutterhomeforhope.com) or access the application here (http://twibbon.com/sutterhomeforhope).

I was hoping that you might be interested in sharing this great opportunity with your readership

So, there you go - if you are interested in supporting this cause check out the website and it'll guide you through the process.

Secondly - I'm asking for help for a friend....

If you know of or can find ANY research papers available on MUCINOUS OR COLLOID CARCINOMA please send to me via the email link on my profile page....

This is a rare Breast Cancer that affects just 2% of people - it is proving to be very very difficult to find out any helpful information on the best treatment plans and my friend is receiving conflicting information from her team making it virtually impossible for her to proceed to treatment.

So, if you are currently still seeing your Breast Care team and can ask if they are aware of any papers or research programmes into this type of Breast Cancer, I'd be very grateful.

This information is required by yesterday..but today, tomorrow or as soon as you can will still be good. Anything you can turn up please forward to me.

Many thanks xxx

Wednesday, 22 September 2010

Just a couple of Thank You messages...

Firstly Mum - thank you for trawling the streets of London for me to find nightdresses that unbutton all the way down the front, are not too long, too short, too big, too flowery or girly or just plain silly....much appreciated.
I couldn't find anything so you've sorted me out now - Thank you.

And also thank you for coming over to feed Dj yesterday after school and also next Wednesday for my next long hospital appointment...and of course I know that you and Dad will be there helping Rab out whilst I'm in hospital.

And thank you for picking up a HUGE pack of the particular brand of toilet tissue that we use here - that you found on 'special offer' locally.
I can see that 16 loo rolls will be pretty useful to me, being as how I won't have a bum soon :-)))

Also wanted to say a big Thank You to Wendywoo.....who sent me, via James, the most beautiful selection of Clarins items all contained in lovely Clarin's bag.
Gorgeous Wendy, many thanks - they are so very appreciated :-)

And Hazel...just wanted to say Thank you for shoving me back onto the straight and narrow path again yesterday.
I do KNOW that you are right, one step at a time and use the wait and see approach - but it did help to have the chat yesterday.
Looking forward to our night out next Thursday :-)

Last bit for you J.........Thank you to the Gunners :-)

"IT was a case of wham bam thank you Sam as Arsenal destroyed their bitter rivals in extra-time"
SPURS 1 ARSENAL 4 ......(sniggers)

Sunday, 19 September 2010

Another Piece of Important Info...Hot off the Press!

I was reading up on an article in the Daily Express the other evening - about 'bowel' cancer.

I do wish they would refer to it as either Colon Cancer or Colorectal Cancer rather than bowel cancer because I honestly think that some people literally completely switch off at the mere mention of 'bowels'.... Anway, that is besides the point of what I wanted to talk about.

When my cancer was confirmed the surgeon said to me that it was extremely unfair as I didn't fit the bill at all for this particular type of cancer.

Afterwards the Colorectal nurse discussed this in more detail with me.

Markers for Colon Cancer (or Bowel Cancer if you prefer) :-)

  • Eating an excessive amount of red meat - Nope, I was always a light meat eater and would choose veggie where possible.

  • Being overweight - Nope, been 8st. for years now - UK size 8 and always stayed steady weight.

  • Lazy lifestyle - Nope, always on the go - walk to/from work/school/shops. Out and about at weekends on the common exploring woodlands etc.

  • Heavy on the junk food - Nope, have always eaten healthy food - lots of salad, vegetables, fruits have always been included in every meal.

  • Being between 60 and 70 yrs of age - Nope, 49 at diagnosis and they suspect it's been there for a couple of years at least.

  • IBS/Chronic bowel problems - Nope, never.

  • Family history of Colon Cancer/Genetics - Nope, no-one...I'm the first

  • Heavy smoking and excessive alcohol consumption - Nope - although I did used to be a smoker but was never a heavy smoker. Have only been an occasional drinker (odd glass of wine) for many years.

So....that left me saying 'Why?...Why did I get this cancer?'...and it seems that no-one can answer that for me.

That brings me back to the article in the Express last week.
Headline news is that taking a daily dose of Aspirin can reduce your risk considerably - when I checked the statistics they are saying if you take it for more than 5 years then your risk is reduced by something like 35% (apparently)....

So you may say, what's the point of this post then?

Well simple, it's because I've been taking a daily dose of Aspirin since 2004 when they diagnosed me with Lupus and 'sticky blood' (Hughes Syndrome) ..........so not only did I have 'no real markers; but I was also doing the medical stuff that they say "can reduce your risk by a large amount" - just all seems a bit ironic really :-(

That's it...just musing :-)

Friday, 17 September 2010

Dates for your diary.......

The following dates are now important - so pay attention :-))

Tuesday, 21st Pre-Op Assessment at hospital - "expect to be here for a half day"

Wednesday, 29th - Surgeon wants to meet with me again (just to check I'm still in the country I suspect)

Monday, 4th October - Admission to hospital (if I'm still in the country :-)...)

Tuesday, 5th October - Horrible Op (if I've not worked out how to escape undetected from the ward the previous night)

Wednesday, 6th October onwards until further notice - in hospital.

Updates will be provided by James as and when he has relevant information.

Thursday, 16 September 2010

JUST for You James.....:-)

Sometimes we can evaluate, discuss, pick holes in things, say what could have, should have or would have happened had someone been there/not been there.
We can talk until the cows come home about how it might have been...

But then some days a picture says more than a thousand words......

Enjoy - I did.... :-)

Tuesday, 14 September 2010

Made me laugh.....

Dj - as you probably know by now - has these little one liners and 'things' he just says sometimes. Tonight was a Dj remark to remember night :-)

Him:- Didn't the surgeon want you to go into hospital today Mummy?'....
Me:- Yes he did, but we've delayed it for 2 weeks while I sort a few things out first and do some stuff that I want to do before I go into hospital
Him:- Stuff you want to do in the next two weeks?
Me: - Yes - like get you completely settled in your new school; make sure you're happy with the travelling by yourself; organising a few bits and pieces here to make it easier for Daddy to run things when I'm not here for a few weeks; spend next Monday with you as you've got a day off school and we can go somewhere
Him:- What you SHOULD do is spend the next two weeks farting and going to poo as much as you can so that when you can't do it any more you'll be all farted out anyway.

LOL, what can you say to that......:-)

Then around the end of last week was this conversation.....

Him:- Mummy, are you feeling totally okay about things now, y'know the operation and the bag and stuff?
Me:- Yes, I'm fine. I've accepted that I'm going to do it now and once it's all done I'll be fine
Him:- You DO sound really positive about it all now
Me:- Yes, thanks -I'm feeling okay about it now
Him:- Bet you don't feel so positive when you wake up hooked up to machines with tubes coming out of your body after the operation though


Cancer? What Cancer?........

I didn't post anything for a couple of reasons really....I wanted to just try and forget about this stupid cancer for a few days.
I wanted to pretend I didn't have cancer any more - it's just 'gone away' all by itself and I wanted to just go back to being normal again - so I did.

Now back to face reality again - I DO have cancer, it HASN'T gone away (either all by itself or with help) but I am normal - the new normal ....:-)

I've done lots of thinking over the weekend and one of the things I was struggling with is/was guilt....

You all know that I've not wanted to have this operation (and still don't 'want' it either) but at times I've found myself thinking how completely selfish I am - simply because this operation gives me a chance to attempt to get rid of this disease...other people don't have that chance.
For them no operation is going to get rid of their cancer and then I feel totally selfish for being pissed off that I've at least been given a chance via the operation.

Someone (you know who you are.....but you're too shy to comment on my blog) helped me with this over the weekend - she helped me put this into perspective and I'm grateful for that.

What she said was:-
"Yes, there are people worse off than you. But I always think - so what? There are people better off too. I don't think it helps to try to think of those who are worse off. You have to be able to feel all the emotions you are going through without feeling guilty for having them"....

At that point, it all just clicked into place...There ARE people better off than me and they're not spending all their time feeling bad because they're well - so I need to move away from the guilt and accept that my feelings about this op are MY feelings and I'm entitled to have them and sod the guilt.....
Human nature is a funny thing really.
Thank you K for that piece of advice, it meant more than you probably realised at the time :-)

Anyway, I've had a letter from the psychology department at the hospital asking me to contact them to sort out my counselling for both pre surgery and post surgery...So I'll sort that out this week sometime.
At least I can now say 'I need help with the procedure, but not with the guilt' :-)))

I asked for the counselling because I know I need professional help with coming to terms with all this.
So on Friday I get two letters from the hospital - first one is a copy of a letter from my surgeon to my GP so it's full of stuff about the operation, PET scan etc and talking about carrying out my op by the end of September - No reaction from me - just read it and put it to one side.
Then I open the second letter and it's from the psychology department asking me to contact them with regard to counselling - and I start to cry.
WHY the hell am I crying? I ASKED for this appointment for goodness sake...surely I should be crying about the first letter - not the bit I actually want to do.
Sometimes I have no idea what's wrong with me any more :-))

Friday, 10 September 2010

Eid Mubarak......(Happy Eid)

Today is Eid-ul-Fitr.....this marks the end of Ramadan.

During the Holy month of Ramadan, Muslims fast during daylight hours - no food or drink from sunrise to sunset. The month of Ramadan is a time for spiritual reflection. The fasting is intended to help teach Muslims self restraint, self discipline and generosity. It is also to remind them of the poor and needy.

Eid-ul-Fitr is a purely spiritual event, it is not linked to any historical event or related to the changes of the seasons.
It is the time when Muslims thank God for having given them the will and the strength to observe the month long fast during the Holy month of Ramadan.

During Eid-ul-Fitr families get together, pray, eat together, exchange gifts & give sweets to the children.
Eid Mubarak (Happy/Blessed Eid) to all Muslims

Wednesday, 8 September 2010

So..What Next Then?

Today I did nothing much until my appointment time....

Met with my surgeon this afternoon and he said that there was some good news but not enough of it, to stop it from being bad news ....

The PET scan showed that the Radiotherapy HAD reduced the tumour but unfortunately not enough.
However, the MRI had showed virtually no change at all - so I'm glad I had the PET done as it showed the true picture.
It also confirmed that there is definitely no spread to the liver or lungs and the strange ache really must just be a 'all in my head' pain...

So, the tumour is smaller but not small enough. However it's smaller to remove and hopefully that'll mean that he manages to get it all during surgery.

We then moved on to discuss surgery...he initially said he would like me to go in and have the operation next Tueday (14th September) but then we discussed my worries about the Shingles virus being fully suppressed before surgery and also numerous reports that I've read that discuss healing issues after pelvic Radiotherapy treatment.
He agreed that healing is an issue after Radiotherapy to the pelvic region and he said that he's happy to wait a couple more weeks in order to provide me with the best chance of healing and hopefully avoiding 'further issues' (further issues involve further op's...not a road I really want to travel if I can avoid it)
I then said that I would contact my GP and discuss anti viral treatment to see if we can get the virus to behave before the op, during the op and definitely afterwards. My surgeon is concerned that if it re-flares it will interfere dramatically with the healing process....sigh.....

We then discussed the operation in (gory) detail.
The short version is my surgeon hopes to be able to do this procedure via keyhole surgery, he expects it to take approximately 6 hours and during this time he will remove the anus, rectum, tumour, lymph nodes, and approximately 15 inches of colon, provide me with a permanent stoma, stitch me back up and get me into Intensive Care for a day or two then moved to HDU (High Dependency Unit) and then finally onto a general ward for approximately 10 days.

My surgeon then informed me that depending on what they find in pathology tests after the tumour is removed, I may require a 3 month course of intensive Chemo BUT he also said 'We'll see after surgery, it may not be necessary' ....
So I'm holding onto that for now - 'may not be necessary' is better than 'definitely will be necessary'...

He also said I will be monitored for 5 years after surgery - this will include 6 monthly scans, blood tests, colonoscopy's and any other tests that they deem necessary during this time. The idea is that if anything else decides to appear they'll catch it quite quickly and be able to make fast decisions about possible treatment plans.

So, I've explored all my options...I've researched everything I can...I've read papers until 3am and used a medical dictionary to work out what they mean......I've weighed up different scenarios.....and I've now decided that I have to go ahead and have this operation and live with a damn colostomy bag....and just hope that it doesn't come back somewhere else!

Do I want this? No....but then I didn't want f&$king cancer either - that's just the way it goes I guess.


This evening I've picked up my emails and discovered that someone who I 'met' through a forum a few months ago has just lost her husband to this disgusting, cruel disease.

I knew the time was approaching but it doesn't lessen the pain that she feels and the distress at the way he deteriorated so quickly over the past few weeks.

I am glad he's free of pain - but now her pain continues.....I DETEST Cancer!

RIP - Trevor 3rd September 2010

Tuesday, 7 September 2010

New Appointment .....:-(

I've received an email today asking me to go to meet with the surgeon tomorrow afternoon.

This will be for the results of my recent PET scan and to discuss the surgery.

Suddenly I can't breath.....

I thought I was gaining some control of all this and getting myself ready for what I have to do - but now I'm sitting here thinking how am I going to get through this.

Update tomorrow, nothing much else to say at the moment :-(

Saturday, 4 September 2010

1st Day at Secondary School

As you know, today was the first day of Secondary School for Dj.....He seemed to be looking forward to it and although he confessed to feeling slightly nervous he was not terrified.

I left him there looking a little lost and scared but knowing he'd be okay once I'd gone. Told him where I'd be at home time and left him to settle in.

Both Rab and I collected him today and he came out with a smile (always a good sign on a first day) and he said it had been fine.
He then filled us in on his day and literally didn't stop talking all the way home. So in brief, this was his day.....

  • He made a couple of new friends (Owen and Daniel);
  • enjoyed lunch (egg sandwich, a flapjack and a drink - such a creature of habit) ....he's eaten hundreds of egg sandwiches in his life - never at home, always at school;
  • he took part in a team game and his team did well - apparently they didn't win but had a lot of fun
  • found out he has something in common with a girl in his class, they both detest tomatoes
  • learned how to operate the biometric system they have for school lunches, library books and registration (everything is done via fingerprints)
  • managed to put his lunch money onto his account and more importantly managed to ask for help when it didn't work at first
  • found people to sit with and have a chat to at lunchtime - this is something he would have really struggled with even just a year ago
  • was awarded a merit certificate for finding out essential information that everyone else forgot to ask about (his obsessional need to know things comes in handy sometimes....lol)
  • and is fine about going back on Monday :-)

Oh and lastly, during the summer holidays they were asked to prepare a piece of homework on themselves.
They could choose to present in either Art form, story, photographs and text or powerpoint document on a USB....Dj decided to do a mosaic of himself and write a short piece on his likes/ dislikes using his name as a key....
This is his mosaic below (A4 sized)........

And this was the text that he wrote alongside it.....

D = Decision making, this can take me some time. I like time to think..

J = Jumping, I like to jump sometimes, I find it relaxes me and gets rid of stress

A = Art is something I find relaxing. I like to be able to spend time getting things just right

M = Military machines, weapons and wars is a subject that really interests me. I have WWII items that I collect

E = Energetic – sometimes I find I have more energy than I know what to do with! Using the trampoline here will be good J

L = Listening, I like to listen and think – it is something we should we should all do more often, listen to each other and think about what we say.

So the things above tell you a little about me. I’m not so good at talking about myself, in fact at Primary school I wouldn’t have been able to stand up here and do this.

I used to think that no-one was very interested in me but since I’ve grown up I’ve realised that I am a good friend, a great listener, a good advisor and I’m fun to be around.

I’m looking forward to doing really well here at this school and making some good friends along the way.

He handed it in to his form tutor in the morning session - then during the afternoon the Head of Year came into his class and held up his work and announced that he really really liked this piece of work and could Djamel please stand up.....So apparently he did (amazingly, because in the past he'd have tried to disappear underneath the desk)
Mr W the Head of Year then said there was going to be a prize awarded for any work that he considered to be of a particularly high standard and 'This is the standard I'm talking about...Well done Djamel'

He was sooo proud of himself and the truly great thing is, that he accepted the praise without going into a blind panic - I think he's going to do well at this school because he's determined to.

Wednesday, 1 September 2010

PET Scan day....

Today I had my PET Scan..

First had a chat with the Radiographer - usual stuff, do you have diabetes, are you full of metal, what medication are you taking....sign the forms.
Then we had a brief chat about the actual scan and I asked if my chest/lung area would also be scanned, told him about the dodgy ache in the chest area and explained that the CT/MRI scans are not showing anything.

He went off for a bit then came back and said that he'd discussed it and yes they would now scan my chest area too in light of what I'd mentioned, as the CT/MRI could potentially miss tumours in this area if they were very small/early tumours.
He also said he thought it was a good idea for me to have this scan as it would clarify exactly what was happening with the rectal tumour and has the ability to identify any new 'hot-spots'....
I got the impression that he didn't think it was a waste of time or 'not really necessary'

Anyway, after this chat they lay you down on a bed in a quiet area...everyone has a little cubicle with a curtain to draw round for privacy and there's about 6 beds in there.
They come round and put this radioactive stuff into your arm, dim the lights and say 'That's it, have a sleep if you want and we'll wake you in about 1.5hrs'...off they go.
I couldn't sleep because I wasn't actually tired but also because the man in the bed opposite mine was snoring his head off and he sounded like a volcanic explosion :-)

When the time is up, they take you to the PET scan machine and you simply lie there as still as can be for 30 minutes whilst the machine does it's stuff. Then you go home and wait for the results.

Tomorrow I'll email the original hospital and get a new appointment organised with the surgeon to discuss the results and next steps.

Happy Birthday Djamel - 31st August 2010

Happy 11th Birthday to Djamel...:-)

I think he had a lovely day, presents, pizza and chocolate cake (favourites) and his friend round to play from 2pm to 8pm - we did ask him if he wanted a birthday party but he said he didn't... (he's not really a party kid, seems to prefer just hanging with his best mate Aidan)...

Nan and Grandad came over and then James and Leanne arrived after work in the evening.

The two boys had 'party food' (junk) and I cooked a Malaysian Beef curry for us adults, with curried lentils as a side dish, mixed salad and nan bread....everyone seemed to enjoy it, so that was good.

Djamel got some lovely presents - thank you to everyone, much appreciated....

Great (huge) selection of spy books and cash from Nan and Grandad
Paintball guns and a new gaming mouse from Auntie Sarah and Manolis

Book voucher from Lou, Cash from Hazel, Cash from Riad, Cash from Jacqui,
Lots of books, PC/X box games, Nerf Dart-Guns from Mum and Dad
Nintendo DS game from Aidan
Hoodie top and a WWII Gas mask from James and Leanne....Yes! Really...:-)

Djamel collects WWII stuff. He already had a helmet and some ammunition cases and he'd asked for a WWII gas mask for ages (he saw one in Gloucestershire when we stayed with Lou last August)...

He was soooo happy when he realised what James and Leanne's present was :-)

I asked him if he'd had a nice birthday and he replied 'Actually it was a REALLY nice birthday' ...so, like I said - it's all good :-)

Grandad reliving his childhood - again :-))

My Scan.......

I got what I wanted.....

My PET scan is taking place at 2pm tomorrow (1st September)..the hospital contacted me today and asked if I could do this despite the very short notice - I agreed because it suits me just fine, sooner the better.

I have to fast from 8am - only water after that - then get to the hospital for 2pm. The lady I spoke to said to expect to be there 2-3 hours as this scan takes time - YAY! Exactly what I want, a thorough, precise and LONG scan - perfect.

Fill you all in after the scan tomorrow.

Positive thoughts please between 2pm and 5pm...If this result isn't what I want it to be the next step is surgery as this really is the last thing I can try....