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..

Friday, 31 December 2010

Happy New Year to all......

Just wanted to wish you all a Very Happy New Year and hope that 2011 brings only good things to everyone.

We don't really celebrate New Year, I never go out on New Year's Eve mainly because it was always so difficult to get a sitter for that night that I got into the habit of spending it at home - then as James grew up I realised I had zero interest in going out with other people and would rather spend it at home with him anyway.
That continued throughout my adult life - I'm just not a 'party person' the rest of the time so see no reason to become one just for New Year.

Rab nearly always works on New Years Eve, usually until about 3am - but this year he's finishing earlier and should be home by 10pm. We'll see the New Year in with a toast then move on.
I have to admit that this year I'm quite looking forward to saying goodbye and good riddance to 2010!

Apart from all that a quick update on me (yes, it's all about me, me, me...LOL)..
I'm still having my wound dressed every two days - it's still not healing and is being packed with something called Aquacell (Aquacell promotes healing from within apparently).
I asked the nurse today how long she estimated until it healed and I suggested maybe another week or two?....she said unfortunately it'll take much longer than that now. Blast! Still no sign of being able to lay in my nice hot bath yet.

I'm tired but not totally exhausted like I was a month or so ago - although I do still feel worn out most days by the end of the afternoon. I'm eating better - in fact over Christmas I ate plenty and managed to lose a whole kilo! Go figure eh!

I've discussed with the nurse the idea of having CEA blood tests done after 3 months instead of waiting for my 6 month check up at the hospital and she thought this was a good idea (*thanks Fiona for the suggestion).

My wound is uncomfortable and hurts if I stay in one position for too long - parts of my bum are still completely numb indicating nerve damage - which is apparently very common in this op. The advantage to this is that the nurse is able to pack the wound with Aquacell without hurting me at all - every cloud has a silver lining eh :-)

The Stoma works perfectly well, is not difficult to look after and I've accepted that it's here to stay. Do I like it? No, but I can live with it anyway.

I'm currently sourcing alternative bags as I dislike the ones that have been sent to me (*clear bags and actually I don't want to see the contents, thank you very much) so my current mission is to find colostomy bags that are both comfortable to wear and easy to live with.
Some of them itch like mad (different adhesives I suppose), some hang too low, some are too transparent, some are useless in that they start to come away from the skin too quickly...
I've found one that is 'acceptable' and asked for these to be delivered after the Christmas break...I've also found a new design that is completely flushable and requested samples.
If they work I feel that would be the best option for once I return to work - quick and easy to change and dispose of....eventually I'll work out which are best for me.

The gas pains have disappeared (since I ate the Spicy Thai Red Curry!) and eating is no longer particularly difficult now....I definitely don't have any trouble with eating Christmas pudding, mince pies, cream and all the seasonal fattening foods - it's just that they're not fattening me up at all...oh well, I'll just have to keep trying then :-)

So, just a final wish to you all...........

'May the New Year bring us all good things or at least nothing that we can't cope with - Happy 2011'

Wednesday, 29 December 2010

Christmas pic's........

This year my mum didn't do her 'David Bailey' stuff properly so we ended up with not many photo's :-)....Mum! What are you like eh? :-)

I always forget to take pictures but never worry because mum always snaps away all day and we end up with plenty - but not this year.
Anyway, here are some of what we DO have.....

He just loves those NERF guns - mind you, so does Rab :-)

Mum and Dad (notice the similarities between Dad's beard and Wizard in the background...lol)

Sarah and me

Sarah and Manolis.....(*STEVE - note the paper hat...:-)...)

James and Leanne

Rab's Christmas Dinner/s........

As I mentioned in earlier posts this year Rab was responsible for cooking the two Christmas meals for everyone.
When we discussed this earlier in the year I wasn't sure how mobile I'd be or how much I'd be able to do and I pondered on the idea of going to mum's instead or eating out...Rab immediately said 'I'll do Christmas, you can just supervise me'.

Okay, I admit, I was amazed. I always do all the cooking, preparing, and organising for Christmas - he's always organised the table. It has always been that way - but this year Rab took charge.

On Christmas day we had mum, dad, Sarah and Manolis over for Christmas lunch - so in total there were 7 of us.
Rab prepared vegetables, sorted out the roast beef, got himself a time plan going for things like cooking the Yorkshire puddings and he did really well. I was able to do more than I'd envisaged but the main jobs were all done by him.

Boxing day we had all the same people plus James and Leanne - so 9 of us. Turkey was put in around 9.30am and I stayed in bed until midday (!!) whilst Rab just got on with preparing the vegetables and organising his table for later.
Although I was able to do more than expected, Rab did the vast majority of preparing and with some supervision, cooking too.
I usually end up totally exhausted Christmas evening (not complaining at all - just stating facts, I like doing Christmas and it's a 'nice' exhausted)...but this year I was just normal tired - and Rab was exhausted.

I'm really proud of how he's coped since I was diagnosed. He doesn't say much at times, but that is his coping mechanism....
Whilst I was in hospital he coped brilliantly - remember this is a man who had never used the washing machine before, never mind ran a household...he got himself a washing rota going so that Dj's uniform was washed and ready, ironed all the school shirts, cleaned, shopped and cooked and visited me daily.
Dj didn't miss a single day of school whilst all this mess was going on, Rab kept him on track.

Since I've been out of hospital, Rab's had to go back to work (sometimes working stupid hours) but has continued to cook meals at home and make sure he's doing anything that I've not been able to do.
Now, he's done Christmas too....and then he went back to work on Monday at 6.30am..:-(

Anyway to finish up I'll just add that he even had time to dress up as 'Santa' to make Dj laugh....

And this was Rab after wearing the costume for 10 minutes..'Tired out Santa'..:-)

Twas the Friday before Christmas....

James and Leanne decided to take Djamel to Winter Wonderland in Hyde Park, London just before Christmas...Loretta and Tony also went along with their little lad, Jake.

Dj doesn't believe in Santa anymore - hasn't for years now - but he's brilliant at telling little kids (Jake) all about the wonderful, magical things that Santa can and does do.

So not only did Jake get to meet 'Santa', he was also privvy to an evening of Dj's tales about Santa, the Reindeer and his elves.

Below are some pictures taken on the night....when they came back I asked Dj if he'd had a good time and he said 'Yes, the best'....Apparently little Jake said it was 'The best day of my life so far'....bless :-)

One of the fairground rides.....

Dj and Jake chatting to 'Santa'

I'm not sure who had the most fun really, Leanne and Loretta or the two boys :-)

This pic was taken in the House of Mirrors with both boys looking like something out of an Alien film

So thank you James, Leanne, Loretta, Tony - a great time was had :-)

Wednesday, 22 December 2010

Some Memories of Christmases Past.....

Recently my mum sent me some old pictures by email of past Christmases when we were kids...it brought back some (very) distant memories indeed.

What do I remember about Christmas as a child? Well, we didn't have much money but we always got a pile of presents to open - not expensive, top of the range stuff or the latest craze, just good stuff that contained many hours of potential play.
We had plenty of food in the house, items that we normally wouldn't have such as nuts in shells, Christmas pudding and cream, mince pies and a selection of sweets.
Mum would have a Babycham and Dad would have a Pale Ale - we would get squash...Christmas crackers would be on the table and we'd all wear those daft paper hats - you know, the ones we all still wear now every year :-))

I've always remembered my doll's house and the tiny little items that went inside and was pleased to see that my mum had captured it in a photograph from all those years ago....looking at this photo I can still remember how happy I was when I found it that Christmas (I was 3 1/2 yrs old) and how much I loved the tiny little chairs and other accessories that went inside. It had a particular smell of wood that I immediately recalled on seeing it again.
For many years I actually believed my dad when he said he'd made it himself just for me....then I grew up and realised that this is a man who bangs nails into anything that moves (including shelves) so there was NO way in the world he made it - however it was still great.....

You can see my lovely dolls house here in the pic and my clever mum even managed to capture the excitement I felt this on getting this lovely present. (try to ignore the awful wallpaper and patterns that were 'everywhere' in the early 1960's..LOL)

You can also see that by todays standards, the 'pile' of presents was much less than what some children seem to get nowadays. The difference was that what we received was always appreciated because we knew that mum and dad had gone without things themselves to make sure that we three children always had presents from 'Santa' on Christmas morning.

We had extras to open of course, things like colouring books, pens, plastic hair clips - 'extras' nowadays seem to involve designer labels, latest trainers, top of the range latest craze toys that will be dumped into the bottom of the toy box a few weeks after Christmas.
Parents still go without themselves but also get deeply into debt so that their children can compete with others.

Has Christmas lost it's meaning for some? Yes, I do think so.

We've spent far less money than usual on Christmas gifts this year and it's a tradition I intend to continue with.
I've always liked the fact that we all spend Christmas together as a family, eat lots of rich food, watch traditional Christmas TV and play board games in teams - however in the past I've also worried about what to buy for people, whereas this year I've tried to buy gifts that 'mean' something and spent less in the process.
No more jumpers that Dad doesn't really want or like - this year something smaller but more personal that I'm convinced he'll love.

As children we used to wake before mum and dad, usually around 4am, sneak downstairs and open our parcels whilst they were still sleeping - then we'd go back to bed and wake up hours later to play.
I wish that mum and dad had made us wait really, because it must have been a little disappointing to wake up and find that we'd already found our piles, ripped the paper off and then gone back to sleep after all their planning, preparing, rushing around buying, wrapping and hoping we liked what they'd found.....

I've always made my boys wait until we're all up and about - I wanted to see them open presents, not hear about it afterwards.

Our routine now is get up, have breakfast then Dj can open presents...this isn't rushed and sometimes he'll actually start to play with something then suddenly remember he's still got something else to open...
When he was younger he LOVED Action Man and would spend ages just examining one and totally forget that there were other presents left unopened :-)

Around 1pm mum, dad, Sarah, James will arrive (this year James and Leanne are coming Boxing day as it's Wendy's turn this year to feed them Christmas day) then it's time for Dj to show what he's received and maybe play a board game or two whilst the Christmas lunch is cooking.

After we've eaten and relaxed for a while it's adult present time and Dj then receives his gifts from family too - we introduced this a few years ago and it works really well. Before that we used to give out presents as people arrived but that always felt rushed to me, so I changed it to after we eat.
Everyone seems to like it and says the day feels fuller as there is still something to look forward to after food, so we've stuck with it.

Later on in the evening we have toasted turkey and pickle sandwiches and finger food, plus Louise's lovely yummy Christmas cake, chocolate biscuits, Cheese board, Olives, Roasted Peppers, crisps, dips etc and put on another few pounds (or stones) or two.
Alcohol is not a big part of Christmas for us - we have a glass or two of wine with lunch then most people go onto soft drinks or tea/coffee.

So that's how we spend Christmas....looking forward to reading about some of your Christmas traditions on your blogs.

More pictures from Christmases past.........

Eddie, my younger brother playing with dolls instead of his own stuff (we used to swop regularly)

Me with cousin Elizabeth - neither of us looking particularly happy in this pic!

Us kids with Aunt Lou

This one is Sarah back in 1969 -
She was absolutely mad on Cowboy stuff hence the cowboy hat and toy rifle present from Grandad Lea - LOL....never mind 'Annie get your gun' this is 'Sarah's got her gun, so run'....

This is one of my favourite memories of James as a little boy...he LOVED this print of BA from the A Team and it had pride of place on his bedroom wall for many years.
It was one of the least expensive presents I'd ever purchased and one of the most loved....

Djamel's first Christmas - 1999....

And finally below, this is one of those pictures that you just can't plan.

Took this shot of James, Leanne and Djamel concentrating on a puzzle book that James had received for Christmas (2008) and when we looked at it, realised the man in the background on the TV seemed as though he was studying the book over their shoulder as well - always makes me laugh when I see it

Tuesday, 21 December 2010

Nurse says 'Doing well now'....

Yesterday I visited the nurse at my GP surgery to get the wound redressed.

The district nurses are not able to come to me any longer as I'm now 'fully mobile' (which means you are able to walk 10 metres) but they have said that if the wound still hasn't healed by Christmas, they will break the rules and visit me to ensure that I do not run the risk of picking up an infection at this late stage....so that's good anyway.

So, yesterday Nurse J checked the wound and said 'Looking good and doing well now, just about 1.5cm that still needs to heal'...
She then decided to use something (can't remember what it's called) to help healing and redressed the wound for me.
I'm quietly optimistic that given another week or so, it will heal the way I'd hoped. All those good, positive thoughts are working - so thank you everyone :-)

Maybe, just maybe, my Christmas present will be a long soak in the bath this year :-) Or if not, maybe my New Year gift to myself will be a relaxing bath...either way nearly there, all being well.

Thursday, 16 December 2010

Ouch! That hurts........

Wednesday morning my sister came with me to see if they could get my stitches out yet...they'd been in place for 5 weeks and 1 day.

Unusually we didn't have to wait long to be seen. The surgeon came and had a look and decided that although the wound hasn't fully healed, it was now time to remove them as they were starting to embed into the surrounding skin.
I took my paracetamol (my own supply...lol) and then he removed them one by painful one.

Did it hurt? Hell YES! but I managed not to cry until the very last two. I knew those last two would be the worst as they were the ones that had continually dug into me every time I moved for the past 5 weeks - felt like having an injection with each step I took.

Sarah held my hand and helped me get through it - she said she stopped looking after the first two and doesn't know how I get through half of what they've done to me at times....I think I'm lucky in that I do have a fairly good pain threshold - and also lucky that I have people like Sarah to remind me that I'm doing okay, even when I feel I'm being a big wuss!

So now I'm free of the stitches but still not allowed a bath until the wound heals more. BAH! but at the same time I don't want to put myself in the line of trouble with regard to healing - so I'll wait longer....
It's almost like having a bath has become an obsession for me now. It's a marker, it means that if I can get in the bath for a long soak the wound is better - and until then I'm just waiting, waiting, waiting and hoping it holds.

The surgeon said he's 'optimistic' that the wound will fully heal but if not we'll have to look at wound packing for a time.

Having said that, no follow up appointment has been made for anyone to even check that it is healing - so guess I'll have to monitor it myself now then and make another appointment after Christmas/New Year if I'm worried.

Tuesday, 14 December 2010

So Doc...will Chemo stop my cancer returning?....

Today was my day to discuss Chemotherapy with the Oncology department at the other hospital...I was back under the care of the original Onc team which I was glad about as he was aware of the problems I experienced back in June this year.

I was feeling quite apprehensive about this appointment as I seem to have far more questions than answers at times.

Anyway, to try to keep this as brief as possible I met with a lovely Oncologist who was part of Dr L's team. Bit disappointed when I realised that I wouldn't be seeing him (Dr L) but really only because he was aware of my 'history' with Chemo and Radiotherapy to date. However, I didn't need to worry as she was totally lovely and really clued up.

We discussed the build up to the op, previous treatment, how I've been since the op (did cry a little at this point but mainly held it all together - Sarah said I did brilliantly....:-))....) and other aspects such as the wound not healing yet.

She confirmed that Chemo could potentially give a 3-5% increase in the chance of the cancer not returning to a new spot - or even to the same spot. However she also felt that my chances of suffering a severe reaction would be far higher....

I explained that I was really frustrated that I hadn't been able to have access to my histology reports which would confirm the Stage, Grade, lymph node involement and aggresiveness of the tumour that was removed. She confirmed that they also hadn't received this from the previous hospital and without it she couldn't really answer my questions in full.
She then said she would ring the hospital and see if she could get the report faxed over.
Amazingly she got it within 5 minutes ! Brilliant.

We then continued with the meeting and Dr L also came in and took part. He said he was fully expecting me to be resistent to further Chemo and understood my reasons completely. I explained that I wasn't happy about the idea of poisoning myself 'just in-case' and he more or less agreed with me. He also said it was obvious that I'd thought things through properly and it wasn't a 'knee jerk' reaction....
I discussed with him that numerous people had done the Chemoradiation, followed by surgery, then followed by adjuvant Chemotherapy and still got mets to other places or a return to the original site - therefore with no guarantee's whatsoever it didn't feel like the right path for me to follow at this time.

At no time did either of them say 'You NEED to do this Carole' because if they had, I would risk it.
He confirmed that there would be, and could be, no guarantee's either way..in other words I could have the Chemo and it might never return, or maybe it would - or I could refuse the Chemo and it might never return or maybe it would.
On those statistics I decided no Chemo at this point in time.

She then discussed the histology report with me explaining that the tumour they removed was 3cm, poorly differentiated, Stage 3a, Dukes C, T2 N1.....(T2 N1 tells them that there was lymph node involvement) Apparently 12 lymph nodes were harvested and one was impacted.
In English she explained that this meant that the cancer could have moved to a new position via the lymph node but on the other hand may well not have done...so again, no guarantee's.

Then she discussed with me the diagnosis of 'poorly differentiated' and explained that this related to the agressiveness of the tumour.
A well differentiated tumour is one with clear borders and easily identified 'clear margin' around the tumour - mine is poorly differentiated which equates to them being unable to define the exact borders and shape.
So again this meant that due to this it could have moved off to find a new home or it may well not have done so....

Based on all the above, I've decided to play a waiting game until my 6 monthly check up in June. If there is any sign of it then we'll discuss Chemo - but not now. They are perfectly happy with my decision and so am I.

I don't want anyone to think I've taken this decision lightly - because I haven't. I've taken what seems to me to be the best possible choice for now.

Sarah asked the Oncologist for her opinion on whether (in some people) the actual Chemo could cause new tumours.
Oncologist said that she didn't think that was the case however it has been proved that Radiotherapy could and does sometimes cause new tumours later on down the line...so taking into account the way I burned during my treatment that could be a cause for concern at a later date I guess.

However, for now I'm just concentrating on recovering from the op - which is still going to take some time as I'm still very weak at times - and getting myself back to full health, returning to work and some kind of normality, eating well and continuing to support my immune system as best I can and we'll see what the future holds.

Tomorrow I'm off to the other hospital to see if the wound has healed enough for the stitches to come out. They've warned me that if it is ready it will be very painful now and to 'bring paracetamol with you just in-case'.....
Now call me daft if you like, but I would have thought that a hospital could supply me with painkillers on the day rather than expecting me to bring my own supply of paracetamol !!!

Fingers crossed for me that if tomorrow is stitches out day that it doesn't hurt as much as I'm now expecting it to :-((

Monday, 13 December 2010

What do you want for Christmas?

This seems to be a question I'm being asked over and over again and my answer is......I don't want cards (emails are great and free).......I don't need any particular presents as there is nothing that I actually need right now - so if you want to make me feel better about Christmas this year, what I'd like you to do is donate just £1 to my chosen charity Trinity Hospice.
As I explained previously, raising cash for them will make me feel like I'm actually kicking this cancer up the arse :-)

Link to the left

Many thanks.

Big thank you to all those that have already donated - much appreciated.

My sister raised a valid point that I feel needs mentioning...those that have donated already have donated in excess of what I requested (which was a pound or just purchase one less box of cards and donate to Trinity Hospice instead)..... because those that have donated gave extra, some may now feel that their £1 is not as worthy - but it IS....

I said it before and I'll say it again, if everyone that read my blog gave just £1 then I would have exceeded my target and had to set a new one. Whether it's 50p or £1 it all adds up and every bit helps.

Merry Christmas

Wednesday, 8 December 2010

How Does it Feel to be Free of Stitches.....?

Well....I really wouldn't know - yet!

Went for my appointment this morning for my post surgery check up and removal of the very annoying and uncomfortable hard nylon stitches in the rectal wound - only to find out that the surgeon feels that the wound hasn't healed enough yet and therefore they are staying in place for another week....that'll be five weeks then!

Although I did just want to relax and lay in a nice warm bath for ages tonight, I'm actually okay about them staying in place if it means I avoid further surgery.
If he removes them too soon he is convinced that the wound could break down and that would involve plastic surgery at a later date with prolonged wound packing in the meantime.

I can wait under those circumstances - I'm fairly desperate to avoid further surgery :-)

Sarah came with me for my hospital appointment today, met my surgeon and had a chat to him too.

He also asked me how I'm feeling about things and I told him I'm quite depressed - he said he would be concerned that I wasn't 'normal' if I wasn't slightly depressed about everything....(good to know I'm 'normal' even though I feel far from it...)

We had another chat about Chemo or not to Chemo - our favourite subject these days it seems.
I told him I'm happy to go to talk to the Oncologist (next Tuesday) about options but that I'm still leaning to the 'no chemo' direction at this point - however, I WILL talk through my options before I make my final, definite decision and it will be based on what's right for me after weighing everything up.

Something that made both me and Sarah really laugh during the appointment was when the nurse called me in and asked me to get up onto the bed so that the surgeon could come in and examine the wound.
So, removed my jeans - kept on my underwear for modesty until the last minute and laid on the bed. She covered me with some of that disposable paper stuff - then said 'Where is your wound?'......
I was so tempted to say 'Ummm.....here on my head, it's why I'm laying here with no jeans on'
When she left the room I told Sarah what I'd been thinking and we laughed so much that my Stoma actually hurt for a moment.......

Later on after the surgeon had finished examining the wound I asked him to send the nurse back in to redress it for me - she arrives, takes ages organising herself and her supplies, pokes around quite a lot for a while (luckily my bum is now completely numb) and then says (this is a classic funny line)....
'Are you able to control your poo?'.....
I replied very calmly and with no obvious sarcasm 'Wellllll, I don't actually have a bum anymore, so no, I can't really control it as such'
She pokes around some more and says 'Oh!...have you got a bag?'
I said 'I've got a permanent Stoma that I attach a bag to'....she says 'Okay, that's good'...

Funny how someone can be looking at a completely stitched up arse and not actually notice that it's not possible to use for normal bowel motions - and be a nurse - LOL :-))

Had fish n chips for lunch on the way back home - really nice place that serves way too much to finish and completely delicious.
I managed more than half - which is no small achievement when you see what you actually get served on a plate.
Last time we got a take away from there, Rab and I shared one portion between us for a lunch and it was plenty - so today, I ate loads!

Have decided that I'm going back onto my supplements from tomorrow. I had stopped them on the advice from the Enhanced Recovery nurse as she felt that the colon needed time to adjust but I discussed this with her again today and said that I feel I will improve faster if I feel I'm doing the right things with my immune system - she agreed that if I felt it was important then I should go ahead and restart.

She reminded me that there is no scientific evidence that what I'm taking would make any difference to my overall health - however if it makes me 'feel' better then go ahead.

I wanted to remind her that there is little scientific evidence to prove that adjuvant Chemo will give me a cancer free life, however everyone thinks I should do it regardless - but decided not to bother at this point....

So from tomorrow I'll restart my supplements and in a week or so I'll let you know if they are working, scientifically or not :-)

Other good stuff that has happened over the last few days was that on Sunday Rab and Djamel went out for a while and came back with a 6ft Christmas tree. When they got home Dj said....'Mummy, you are NOT decorating the tree this year, I am doing it myself and you can watch'....This is amazing because I do all the Christmas stuff normally, tree decorating, present wrapping/buying/choosing, food shopping, menu choices, cooking - this year I'm redundant and it's actually quite nice for a change.
Anyway, Dj decorated the whole tree by himself (I trained him well in past years obviously - lol) and the only help he had was with the lights - Rab helped him get the lights on evenly...the rest he did and when he'd finished I told him he'd done a great job.

His reply was a classic ...'Thanks mummy, I don't want you to think that when you're not around any more that we won't have a Christmas tree and we won't have Christmas - you can see I can do it now so when you're not here it'll be one less thing for you to worry about'
Big LOL!
He's great - it would have been one of the things on my mind in the future - I can see that I would have left a list for Rab reminding him 'This is what you need to do for Christmas each year' ....obviously I don't need to now......

As Dj said, one less thing to worry about - it's all good if they can cope well :-))

Rab has been amazing - he's mastered the washing machine, got himself into a routine of washing whites and darks on different days, changing beds at the weekend, washing up, cooking, shopping, going to work, ironing, sorting out uniform for Dj, polishing shoes and all the other stuff that I used to do by myself..... He's gone from the man who sat waiting for things to happen, to making those things happen.
The Stoma nurses gave him a pat on the back the other day and said they could see he was being a star and really looking after me - he said 'It's only while Carole's sick because once she's well again I'm going back to normal'....:-) ))

Here's Dj's Christmas tree...before he decorated it...

Then after all his hard work.......

And traditionally, always the last thing on the tree is the Angel.
Rab used to lift Dj to put her in place every year - and it's always been Dj's 'job' - but this year he got himself a step ladder and said 'I don't actually think you can manage me any more, old man'.
He's so cheeky (but also right, I don't think Rab could manage to lift him for long any more)...:-)

Sunday, 5 December 2010

I wanted to do a Positive Post .....

but it's hard.......:-(

I'm not finding too much to feel all that positive about as yet - but as everyone keeps telling me, it's early days yet.

So how are things then?
Things are pretty much the same really. I'm still quite tired but not as exhausted as when I first got out of hospital. I have limited energy and moving around is getting slightly easier. Going up and down stairs is now relatively simple - as long as I remember to support my stomach when doing this.
I'm taking no pain relief now during the day as the wound is now more a discomfort than pain issue.

District nurse has been again today and confirmed that there appears to be no infection whatsoever around the rectal wound - which means all should be okay to remove the stitches on Wednesday. Yay! At last I'll be able to have a long soak in the bath - that's something to look forward to.

Eating is still a battle, not so much because I have no appetite now but more because just about everything makes my stomach feel unsettled and shortly after eating I get pains in the colon which go on for hours - sometimes all night.
The only way I can describe this is 'trapped wind'..... Imagine that you have the worst stomach pain caused by trapped wind...the answer is to leave the room (or if you're Rab/Dj - stay where you are) and do the biggest fart you can muster!
Well, here's the problem of course - I can't fart, so the wind stays trapped and continues to cause pain and discomfort until IT is ready to leave via the Stoma. Last night I was awake from 3.58am to 5.45am just walking round the front room rubbing my tummy and hoping for a blast of air at any point. It didn't happen so eventually gave in, took some paracetamol and went back to bed. Grumpy and tired when I woke at 8.45am this morning.

Some people have said it's trial and error with food but the truth is that currently everything (apart from Sugar Puffs) causes this trapped wind pain - and I mean everything.
I'm trying to motivate myself to eat and have definitely felt 'hungrier' this last week, but then knowing that whatever I do eat will cause pain is yet another reason to try to eat very little.

I'm not sleeping as much as before during the daytime hours now. My weekday routine is to get up at 7am with Dj, sit with him whilst he gets ready for school. He leaves the house at 8am and I tend to have a cup of tea and go back to bed around 8.30am until about 11am. I then stay up and awake until bedtime - so definitely not as sleepy as when I first got out of hospital. I was sleeping more than being awake at one point.
Weekends are different, I get up around 10.30am and then stay up - although yesterday I had a short half hour nap during the afternoon.
If the truth is known though, I'm only able to stay awake until bedtime because I'm doing so very little - being awake is an achievement in itself!.....
Today Rab has done all the housework, hoovering, changed beds, washed up, taken Dj out for some lunch, later on he'll do the ironing for school and work tomorrow - I've managed to get up, have breakfast and shower.
I do feel guilty that he's doing so much and also working full time but I just can't really help yet.
He says 'Just relax, it's fine' but maybe I'm conditioned to feel guilty?

My lovely sister, Sarah, is now here in the UK and she's also been looking after me - along with Rab, Mum, Dad, James, Leanne and continual offers of help from Jacqui, Carrie, Nayla, Hazel and numerous other people - all so appreciated.
Sarah arrived last Sunday and has been over here cooking, ironing and keeping me company - telling me it's okay to cry, it's fine to feel crap about all this and that no-one has the right to tell me that I should be feeling 'grateful' or 'relieved' - which is good, because I feel neither.

Actually I feel like a petulant child - I'll tell you how I feel....... It's not fair, I feel ripped off, my body feels violated, I have zero self confidence now, the bag makes huge embarrassing gas noises when you don't want it to and no noises when you need it to, my whole colon area is uncomfortable and sore, I no longer enjoy food, the Stoma never seems to stop producing more and more crap (even though I'm eating very little), I have no control over basic functions of my body any more, the wound area is numb in places and it's becoming obvious that they have cut through nerves which have affected the 'feeling' there, I have 'phantom pains' in the rectal area, the stitches around the Stoma are sore and irritating, the bag system is just horrible - it stinks when I change it and is just so hard to deal with emotionally (not physically) and I don't want to hear about how bloody lucky I am!

Maybe the next post can be a 'positive one' eh :-)

Oh before I forget, Arsenal top of the Premier League after their win yesterday - now that's positive of course!