I'm not going out.

That's my Zaki earlier this year on the way home from Glastonbury, we stopped at a service station and they bumped into Dick from dick and dom....kids programme, Zaki was soooo pleased to have this pic taken.
Adam was cooler that's him below, he is only just 15 in the pic, goodness knows what he will be like at 18!

We were watching Eastenders tonight and Adam commented after Pat was told that her cancer wasn't cureable... well at least yours is........he had never asked directly and in an instant i couldn't lie so i said no it isn't. He didn't break down and weep or run out of the room, he was just a bit peeved that he had thought it ok. When Zaki came back onto the room he told him even though i tried to eye ball him not to and he responded with we can handle this you know....Zaki said oh that's sad.

Hmmm and humph ! not the reaction to expect but then i guess i play it all pretty low key and i don't look ill. Adam asked if the op i might have would cure it and i said no unlikely i guess he is getting his head around it.

I was meant to go out tonight with friends, i didn't go, not in the going out mood i prefered sitting at home with Zaki who would have been on his own anyway had i gone.

Just have to see how the boys go on, Joe the oldest has known the situation for a while, what can i say my own response to my mum's news and dad's was mucht he same as theirs, stoic and not too emotional those family traits are inbred and difficult to throw off , but they also stand us in good stead.



How did i feel?

I have been reading the columnest Sue Carroll's account of her battle with pancreatic cancer today, she died on Christmas Day, and co incidentally Pat on Eastenders was told that she had cancer and i watched her face crumble.
It made me think of when i found out i was dealing with cancer and to be honest the actual moment i am not sure of. I think it was indeed when the Doc did the colonoscopy and then told me that he thought it was malignant, but that was a few days after i arrived at the hospital....did i know before? Certainly whilst on holiday and sitting in Luxor Hospital it didn't occur to me that it was cancer, not even on the flight home or after being admitted to hospital.
I think it was when he told me, and i think i just thought ok cancer we'll just remove it and that will be that! and i guess the swathe of tests and scans and docs coming to discuss the op took my mind from it as i was concentrating on the operation itself, by the time i got to reconcile myslef with the fact i had cancer they had removed it!.
I continued on towards and after my op with the same appoach until i was told the outcome of the tumour staging. Somewhere in between staging had obviously been explained to me because when they told me it was a C i remember being very upset that it wasn't a B as i expected. The registrar told me very matter of factly with two junior doctors in attendance, his bedside manner left a lot to be desired...later he was to check my wound with the same two juniors, explaining to them with me lying on the bed, that this is what we do with an infection best to get right in and remove as much as possible... whilst actually doing it. Didn't hurt but was uncomfortable, i could see the Juniors squirming and then the ward sister walked in suddenly and took a sharp intake of breath! she later apologised as she hadn't expected to come across him dealing with the wound......glad i wasn't able to see.
Being told it was a C did make me cry a bit, the sister tried to console me with a hug, which isn't the best move in my case but i dealt with it and just sat quietly after they had gone. Deep down i have always believed that it would be eradicated. For the three years post chemo i talked about having had cancer i felt well was back at work and all was ok my future was all ahead of me.
Today it seems bleaker, the symptoms of the pelvic tumour haven't gone away as i had hoped they would with the radiotherapy and i know that to beat this i will have to have the huge op. I still somehow think that the lung mets are not as significant as i keep being told, well i guess i also do realise that they are too. So the big op is still a debate, though i still feel that if they are confident of removing the pelvic tumour then surely i should let it go, what would i suffer if they didn't.........but then i will suffer if they do......but then i need the time with the boys what ever state i am in.
I have come to the understanding over the last few weeks that if i did not have the boys to think about then i believe that i would not want the op on the pelvis. It scares me silly because of how much it will take away and change me. Although i am not hugely bothered about my hair, i don't like the change that has been thrust upon me.
I also very often think i wish i hadn't had the boys to leave them without me. Of course i love them dearly and wouldn't not have had them but if i hadn't had them i wouldn't feel so bad about leaving them behind. The only!!! time that i may get upset talking about hte cancer is if i talk about the boys and i never know when it will catch me.
I was chatting to my neighbour about it all a few weeks ago and of course he knows the boys living on the other side of our semi detached properties, such good neighbours to be able to do that! and we talked about the boys and the tears welled up! I only get upset for myself when i think of all the big moments i will miss, relationships, grandchildren being an only child i always had this dream of one day at christmas sitting at a big table with the boys and their families all around me. I see old people here and there and i think how lucky they are how very lucky to have lived and be at the point that if i died today there would be few regrets because i lived a life and saw my family settled and managing. I always thought that somehow i would help with babysitting and be there to help out, something again i didn't have myself, endless treks to drop the boys at the childminders trying to juggle work and the the boys needs.
I have never asked why me, and i don't think why me..... why the boys? it is so unfair for them to lose me before they have really known me, poor Zaki since he was 7 the shadow of cancer has hung over him and if i have my way and see him to 18 what age is that not to have a mum!!.
I see how my relationship developed with my own parents, my dad till he died when i was 33 and then mum till 44 there was a substantial shift in those last 10 years and the boys will be deprived of their chance.
Ok so now i am writing this down it is getting to me, so i think i should sign off and concentrate my mind on other less emotional pursuits otherwise i will not sleep.
Well will just have to see what 2012 brings.

What this is for

I just had a re read of the blogs, i am considering opening the blog up on beating bowel cancer and wanted to check what i had written.
It is quite personal and that's fine it's meant ultimately for the boys, i am also writing things in hand in a book when i think of it for them too, lots of family history stuff that i can remember which at the moment they aren't remotely interested in but maybe in the future. It is one of the things i miss about not having my parents around, and now with my aunts and uncles gone i am the older generation!!!!
I don't have brothers and sisters either so it really is down to me.
So if you read it i am absolutely fine with it as an integral part of my existence now is about cancer and i have found it helpful to read other blogs that i can relate to or that make me think again or give me a new perspective.
Oh and excuse the typo's i often write in a hurry and don't have time to go over things.......

Changes

Fast approaching a new year and i was thinking today of how much cancer has changed me. More physically! this time last year i had shoulder length, albeit out of a bottle, blonde hair! Now grey and short. I have had to acquire a new brush, new shampoo, and new hair products. Everyone says that they like it but it isn't what i chose for myself.  Cancer the gift that keeps on taking, there isn't another disease i think where the cure can be worse than the illness itself, that can completely take away your identity, and induce people to give you the sad i am sorry look even before they have started to talk to you.....or as happened a few weeks ago leave you in an awkward kind of limbo when someone grabs your hand and tells you how much they are thinking of you as if you have gone already, i try and lighten the mood but hard when the individual is still working through being kind and supportive.....this is someone i never really liked and only had anything to do with me when i had something she wanted, i guess my prejudice got in the way of her kindness.
I am lucky i don't feel ill i don't have pain, in fact the only time it is a problem is when i have the treatment! I imagine in time this will change but in my mind at the moment it isn't there and it isn't coming. You don't pre empt the possibilities as it is too scary to contemplate.
The off days are the worst and especially those at night but they are rare i think i have had a couple since last year of being so upset at the prospect of not seeing my boys through their seminal moments or leaving Zak the youngest before he is 18.....and anyway what bloody age is 18! but it's the thought that with his brothers to support him he has more of a chance without me.
Anyway it's all good be here a while yet!

Bingo and Bowels

I had in invite in the post a while back to attend a meeting regarding a prospective colorectal support group at Lewisham Hospital.
I arrived late..as usual and on arrival was presented with a hall of about 50 or so people sitting around tables and for all the world i thought i had stepped into a bingo hall....everyone seemed so much older than me and i am 49!
I guess it was a reminder that it does generally affect older people but i really was surprised to feel so out of place.
There was one guy i reckon in his 60's who was sat apart from everyone else at the tables, thought i would join him as no one had looked up to welcome me into their midst.
This guy was a maverick he proudly explained that he had been asked to join the group but he said no he didn't like ice breakers he just wanted to get to the point of why we were there please and thankyou very much.
It interests me when you come across people who have already set their agenda he wasn't going to participate he didn't want to set the rules he wanted them given to him. He had beaten bowel cancer and said that to him it was just about having something wrong and cutting it out and carrying on. What was all this retisence to use the word cancer you just got rid of it and continued on with your life.
It's a good approach to have if you do indeed sut it all away but as we talked and he learnt of my diagnosis he did seem to soften, i wonder whether he had considered when cancer is scary and doesn't just mean getting rid of.
We all have our soap boxes and those beliefs that we have see us through i am sure he continues to espouse the idea that cancer isn't a scary word but i also think for a while he considered it could be.