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.

The day before Tomorrow

I will think of a better heading next time but this is indeed the day before the 29th November, five years tomorrow since i sat with mum as she died and a year tomorrow since they told me the cancer had returned.
It's always a odd time of year for me i remember the timeline clearly five years ago when mum phoned at work to say they had found shadows on her lungs on 13th November. I drove up on the Saturday with my two younger sons Adam at 10 and Zaki at 7 she lived in North Yorks me in London. When we arrived we walked in as usual she never locked the side door and i found her standing in the middle of the room, she greeted me as if i had only just returned from a trip down the road, no hello how was the journey or a discussion of the route as my dad would have done....'i can't find my teeth' she had lost them for a day, she looked frail but then she was 84 and had been diagnosed with breast cancer 5 years previously. I told the boys the first to find them would get a pound and they ran around looking for them to no avail, so i went to make a cup of tea, the washing up was still in the sink so i started to clear it during which i found the teeth! She giggled at the stupidity when i told her and we had the tea.
 She had elected to do nothing, when Dad was ill with cancer she  felt that the treatment he had made him worse and on that basis didn't want any for herself. She carried on as normal, her neighbours even querying whether she had cancer at all. She had a history of being Bi Polar, i was bought up with the term manic depression and she suffered with it badly especially in the 10 years since dad died as he wasn't there to monitor her. The CPN team however were brilliant and it enabled me to know that she was being looked after up there. She never wanted to move down to mine....'but it's so horrible where you live!'
On the Monday we went back to the docs, her CPN Vanessa came with us she told me in the last week mum hadn't been herself at all, on the Thursday mum had refused to go into hospital but with me there she took the advice and i said i would take her in later. I think she never liked to make these decisions herself as if she was capitulating showing weakness, but did not remonstrate when i said it was the best thing to do.
We went back home and she got her stuff together and we packed a small suitcase. She walked into the hospital and then remembered once in her room something she needed so i left the boys with her to go and get it. When i returned she said that they had been getting on well Adam was putting her things away for her and chatting away. It would be the last time he and Zaki would see her and i think she appreciated how well they got on.... she was never a cuddly grandma and would not make a particular effort with them but often would complain about their behaviour.
She was a strong woman about a year before she died i got a call from her, i was on a particularly rubbish hands free in the car and couldn't hear her properly, she said what she said and had to repeat twice by the third time i thought i cant keep getting her to do this so i said oh ok that's good and left it. When i arrived home she called and said when i told you that i fell through the glass door in the living room and cut my finger you didn't seem too perturbed....she had tripped gone through the  glass cut her finger called the neighbour and waited calmly for their arrival. She wasn't one for flustering and i think that's why i am the same, just take everything in our stride.
About a week later i was at a training session at work on the Monday when i got a call from the GP she told me that she needed to discuss non resuscitation with me as she didn't think mum was able to understand. She had obviously deteriorated quite quickly. I never went back into the training room, some good colleagues and friends went and got my stuff for me and i got in the car with another manager i had given a lift to, who was kind and helped me realise that i needed to get back to mum as soon as possible although Zaki's birthday was going to be on the 22nd Nov in a couple of days.
So the next day i drove back with Joe the oldest. Mum was with it when we arrived and commented on how tall Joe was he was 14 then and had a  growth spurt since we he last saw her 6 months previously. She did however have her funny moments due to the effects of morphine and was hallucinating on occasion. During this time i was able to take to her about hymns and readings, I went and got a bible from her home and flicked through it, it fell on John 14 we lived at no 14 and i live at no 14  now so it seemed apt, i was later to find that it is a very popular reading for funerals although i didn't know this at the time. She told me she wanted a hymn called lord forty years, her speech was becoming hard to discern at times and i got no more from her than that.
Another day she asked for a cuddle, she said' we never have a cuddle' i can't say that at any time in my life i would go her for one, my father was the more stable parent due to her mental health and we never had a very good mother daughter relationship. It was quite a moment and one i am glad that she made. I in turn told her later before she died that i would never have wanted another mother and that i loved her, for all her faults it was clear that i was loved and that is the  most important underlying thing.
This post has been hanging around for a bit....i am now at  the time just after the nurses called to say that they weren't sure if she would make the night so i went in and sat with her. She looked my way and somewhere in the sunken eyes and drawn face i believe she was still here, she seemed to be focusing on me. I slipped in and out of sleep through the night and unfortunately had a few coughing fits as i had a bad chest infection at the time.
At 7.30 the nurses said that they would like to change her before they went, i quickly went and had a shower before i had finished the nurse knocked on the door. They thought she was going, as it was they had sat her resting on pillows on her bed. There was music playing on the speaker that i had bought for my  i pod and music playing that i thought  she would enjoy in the background, Jim reeves and some classical pieces, calming music. On the bedside table was a montage photo frame that i had put together on bought in, pictures of Mum when she was young slim and pretty, she was reminiscent of the queen when younger, brunette, brown eyes with a bit of a twinkle in them.

 I had bought the pics in so that the nurses caring for her could see who they were looking after, no one is just the person in the bed at that time, in fact they are likely to be the furthest away from the essence of the person, i wanted them to be there for the vivacious woman of her youth as well as the woman moving towards the end of her life. I had bought lilies to create a scent in the room but they hadn't quite opened. I sat next to the bed on the left and held her hand. The nurse stayed and we chatted a while, then i noticed that mum's breathing had changed, the nurse was still chatting but i just stopped responding i was just fixed on mum, i watched as one by one her breaths became more spaced out until eventually they didn't come anymore. It was 8.45am the nurse confirmed that she had gone and left, as she did shoshtakovich piano concerto started to play a beautiful piece that will always remain the piece that i associate with her.
It isn't easy to watch someone who has been such an integral part of your life go, but my overwhelming feeling looking at this woman of 84 was my good ness from her birth on the 8th August 1922 to this moment has been huge, packed with so many experiences many of which would have floored many a person, but she struggled on....i would like at some point to write her life history it would be a best seller, the best stories are those that are written from truth. So here i was to be with her at the end of her life, to be with her the moment she breathed her last, a momentous occasion in a very ordinary day.
I can't say she looked at peace particularly the last two weeks had aged her by so many years, the lack of food quickly forming hollows in her cheeks, but she was at peace and she was with dad i hope.
I phoned my aunt and told her the news she was mum's sister in law uncle Joe her brother died 6 months previously.
Then what? i kissed mum goodbye the sister came down the corridor arms open wide for a hug, she remembered my dad dying in the same little cottage hospital ten years previously, i was barely holding onto my emotions as it was and to have her be too nice would tip me ove rthe edge. I told her just to talk to me normally and to talk about what to do. I looked in the wardrobe and there was the hat that she had worn only two weeks previously when she walked into the hospital slightly out of breath but managing, i am glad at the time that i had no idea that she would  never return home again.
What do you do then? i said i would keep the hat it sat with her ashes for a couple of years before i dispersed them and i still have it. The nurses disposed of her clothes for me, i then left and ended up in Tesco buying presents for the nurses. I remember wandering around thinking does no one see? isn't there something that says my mum died less than an hour ago......but of course no one would notice as long as i held it together  and of course i did, it is just another day except that it really isn't well for me. I took the gifts of tea coffee chocolate and biscuits etc to the hospital then made my way back to mums.
I popped next door to Jean ...jean is quite a character from newcastle and a medium she says. I said i had come from the hospital and she  asked how mum was i told her that she had died and she said 'i canna believe it, my goodness i didn't know she was that ill' my  immediate thought was that i would have thought she would have  spoken to mum by now!
Margaret on the other side was lovely an older lady of 86 with failing sight. She got on very well with Dad, i ended up sitting with her that afternoon quietly just talking i can't honestly think of a better way to have spent that afternoon under the circumstances.
I went back later, it was very odd to be in the house without anyone, to have had dad there and mum and the boys and when dad was ill his brothers and sister in law i was watching a dvd i made at the time of a busy house full of people and here i was on my own.
The following day i looked though the spare room on the bookcase was a folded piece of A4 paper with a poem called letter from heaven i had never heard of it before but if googled it is easily found. There was also  a hymn lord for the years!! at last the hymn for the funeral i also used dear lord and father of mankind which i love and the words were very apt for mum especially 'reclothe us in our rightful mind' The poem when i read it just got me blubbing it all came out what mum couldn't say seemed to be in the poem and has always remained a comfort. one line especially 'and when it's time from your body to be free, remember you're not going you are coming home to me'

Two days after it finished.

Finished my radiotherapy on Friday.

After five weeks of treking to and fro to St Thomas's hospital, right on the other side of the thames opposite westminister. I finally reached the last session. Another experiance to file away in the fight with cancer.

The first visit the day before my birthday was like joining a club as a new member, patients sat conversant with the routine, check in at reception then pop your timtable of sessions into the plastic holder on the wall relating to the machine you are booked into. All but 2 of my sessions were in Electa 1 Electa 1 I felt was the superior maching of the two Electa 4 seemed a bit shabby and creaked a bit more. A radiotherapist, a very pretty austrailan girl who i found out later was called Elise sat with me to go through what was going to happen before i went in.

I had already been for a measuring session and knew that i was to lie face down on the bench. They had tattooed three little black spots on the areas that would be radiated.
I lay down after going to the changing room to remove underwear, i made a mental note to ensure that i always wore a skirt or dress or bought one with me each time to chenge into. I had to hitch the skirt up so that they could align the tattoos to the right measurements on the machine. They would cover my legs with a big piece of blue tissue but inevitably this would shift bit by bit making me feel a little moer vulnerable, but quite honestly after a few sessions it really doesn't matter.
By the last few sessions i knew exactly where i needed to be positioned and they didn't have to move me around too much. They would then once i was in position and they had verified the 'co ordinates' 86.3, 72.8 etc they woud say we are off now press a button that would beep to indicate they had gone then the machine would whirr into action.
As i was face down i would shut my eyes and listen to the music on the cd player that they would leave running, i have to say their taste was particulary poor, though on one occasions suddnely by billy ocean started to play and it was all i could do to keep my composure as Joe took to Billy last year in a very ironic fashion and all i could hear was him singing Suddenly!!! with a bit more passion than is required.
The noise of the radio working was very particular a kind of buzz that would change in duration each time, i counted the longest at about 15 seconds. The noise would start stop and then the machine would whir into another position and buzz again i think about 10 buzzes in total though i never counted. As soon as the last buzz finished i would hear the steps of the radiographers returning and begin to pull my skirt down, they would have to lower the bench and i had to make sure the machine wasn't right above my head before getting up and off.
The first three weeks i drove part way and then got the bus which dropped me right outside. In the last two weeks with the radiotherapy now making it difficult to hold going to the loo i drove all the way in. Paid a fortune for parking but at least got the congestion charge back, and i didn't need to go on the bus which i hated.
After the session i would go back into work but now i have finished i really feel i need a couple of days at home.