Timely

I told you that i had the = the picc line in yesterday, but i didn't regale you with the gory details, how remiss of me!.....bit of a bloody affair and i have a huge bruise wrapped around my elbow. Wasn't as straight forward as the last time i had it, apologies to anyone who maybe facing the prospoect themselves as i said the last one was fine but this time it got stuck under my elbow as she was pushing it through and i could feel it just underneath my elbow! like it kept hitting an edge...well it was i offered to straighten my arm a bit and then it went through. The next thing was i could feel copious amounts of warm liquid dripping over and down my arm....took me a moment to realise it was my blood. I am quite happy to regale others about my experience even more so if like my boss on the phone today he was going...no no enough don't tell me anymore! My son walked out of the room when i showed him. Mean i know but one has to attain some degree of pleasure from adversity at times :o)
It still needs a bit of re dressing but tomorrow i will take a nice pic to show you.
So chemo cycle three tomorrow, feeling apprehensive as i was told initially that i wouldnt ever have Oxaly again because of the side effects, my feet are still tingly numb on the soles and this is likely to make it much worse.
But good news this morning, my application for DLA [Disability Living Allowance} was approved and they have put me on the higher rate! This means not worrying so much about not being able to work whilst having the treatment and also i can apply for a blue badge, not have to pay for raod tax and get a freedom pass in London. Now seeing as i am still working full time and on the face of it fit and well and able to get about ok i feel a bit of a fraud. But it will! help and to know that these things will be in place before i get to the point where i really do need them is great.
I have to go to the town hall in person to collect my blue badge assuming they allow me to have it, how should i enter the building! on all fours or with a pronounced limp?
I have always sad that money comes to me when i need it, i had sickness benefit when i was first diagnosed and claimed for it and the money arrived the day after i was four pounds away from the overdraught limit. The other thing that happened was that on Friday i got a letter out of the bllue from work to say that due to the business case and restructuring etc they needed to reduce my wages by around three thousand pounds a year from the 1st April. I do not wish this disease on anyone, but on Friday i have an appointment with the OH  to see if i can get early retirement, with the DLA decision in place and a letter i had from my oncologist i feel that they would be hard pushed to refuse. Again this has come just when i needed it, if something so awful was to happen to me at least i guess it came when it was most useful.
It is really odd to think that i likely will not be working soon and very very scary, but i am also looking forward to it and chemo willing there are so many things i need to get sorted, financially, legally and in terms of the house and stuff! at least i am not at the point where this would all be too draining, i don't know when that time will come but i intend to make the most of the 'good' health i have left.

PICC Line and such

The PICC Line in the crook of my arm.

I went to the hospital today to have a PICC line installed ready fo the next chemo. It has been a while since i had to go through the double doors into the chemo suite, well actually only since last year, feels longer! When i had my first chemo in 2007 i was much slimmer and blonde and one of the nurses there i got on particularly well with Dee, when i had irinotecan last year she was off on maternity leave and i did miss seeing her. Well she was there today and i didn't assume that she would know me but she brightened up as soon as she saw me and knew who i was! Told me she had always thought of me and still had the hand cream i gave her in her bag!..... i did comment that she couldn't have liked it that much :o) she said she doesn't have to use too much of it. Then i find out that on Thurs when i am to have my chemo she won't be working!, i am going to see if i can change to Wednesdays just so's i can see her, it makes such a difference.
I also saw the bowel nurse and asked about Lesma who i had my last cycles of chemo with. We started on the same day and had the same chemo too, both whining when given the atropine injection. The last time i saw her she had been admitted to hospital and was very poorly. I sat with her for a little while and she told me that she was ready to go and it was fine, her daughter had even had her baby induced a couple of weeks early so that she could meet him. I was so upset and started to cry, i have had this experience with friends when i tell them about me and i am always taken aback by their responses.
I lost her number and didn't visit again as she had so many visitors and the longer i left it the more i thought that she would have gone. I did phone when i found her number....will have to look again for it but there was no answer. When i asked how she was i fully expected to be told that she had died, but she hasn't! What a relief, it just shows you that you can fight this thing against the odds, she is at least 6 months further on than she was given.
So a good day apart from being worked on with a mini scalpel, tubes and wires.

Cold Relief

When would you ever feel relief at getting a cold? well in my case when you thought that the cough and change in breathing was down to lung mets, i think i am ok for now. I guess the clue should have been in the fact that all three boys have been struck down with colds, Joe and Zak last week and Adam at the moment, i do think the signs are manifesting themselves especially as i have taken tomorrow off to see Zaki singing at Felix School of Rock {FSOR} I also think i have a meeting in the morning about the new colorectal group for Lewisham, i may have double booked as i arranged to see an old work colleague at 12pm too....ooops hopefully i can fit it all in Zaki doesn't perform until 3pm.

I popped to see my GP yesterday as i felt i needed to be referred to St Christophers Hospice, at the moment so that i have support for when i have to tell the boys that i really won't get better, i want to do it properly i have ballsed it up so far as i find it so difficult to tell them the complete truth as they get so emotional if i do, and i still don't want it hanging over them like it did when i knew my parents had cancer, especially with my dad i couldn't visit him without the thought of losing him ever leaving the back of my mind and on so many occasions i would well up and have to fight back the tears and carry on. Now i think i have learnt in that respect tears aren't so bad, but we weren't openly demonstrative as a family so i would have found it excruciating if i had then

My GP is lovely i have attended his practice for well about 24 years as i was there before Joseph was born, in fact i attended ante natal classes with Dr Majid and his wife so i know they have a son of the same age.

He was very supportive and gave me a referral form to fill in, he told me to make sure that if there was anything that the surgery could help with to let them know, he asked if i had any support, i don't really and he commented with 'you've always been strong' which tends to be the stock personal trait of mine. I am but i think it is at the detriment of other qualities that i think i should have, to be strong it is easier not to feel too much and i think this is something i lack. i don't have a good network of close support, well at the moment anyway, no parents, no siblings, no grandparents....never knew them anyway,no husband...well one that is useful anyway! no cousins nearby, i was the cousin 'left behind' and the youngest :o) I have 6 cousins John the oldest in Scotland, his sister Valerie in South Africa both my mum's brother Joe's children, i am most like them Valerie and i are the most alike out of all my cousins, Then there is Katherine in Paris daughter of my dad's oldest brother Gerald, then Stephen and Keith in Australia dad's youngest brother John's boys and they have a sister Helen who now lives in Hong Kong.
I then have my second cousin Suzanne who lives near Hastings, her mum was my dad's cousin....we are the closest of the lot more like sisters. Her three boys  are all the same age as mine and she will be ensuring that my wishes are met when i am gone, she's nag bag and we e mail regularly about my situation and hers with her boys who ...well too much to discuss here but have more than their fair share of health issues, i may illuminate another time.

Once i finish work ..... well hopefully that will pan out the first thing i need to do is see a lawyer and work out what i can do and what the best thing to do is financially and personally, i am assuming i would need to divorce the boys father which i have avoided for the last 6 years because i couldn't face the acrimony, he still lives here and we are civil but he harbours an enormous amount of bitterness towards me, i think i will touch on that at a later date, there are always two sides to any story and i am no angel, and i think the boys would probably in the future be interested in what the reasons were for our break up, well mine anyway.
Oh enough i am chilled i may just go and have a warm bath and an early night.

Joe and Jade.

Oh dear it's all a bit overwhelming and the day has hardly begun. Got a call from Joe to ask if i would pick him up from his girlfriends around 12 .30 am seems they had a bit of a problem. Got there at 1.30 and spoke to Jades mum, Joe had said that Jade wasn't the girl he started out with and that she had changed but he wouldn't say why. Jade was in pieces and they had decided to have a week's break...on Valentines day!!!! ...mind you Joe says that Jade started off the whole conversation.
In the car on the way back Joe said that Jade was too needy and that she needed to fight for the relationship like she would have done before, she used to be more fiery. Her confidence seemed to have gone and he felt he had to speak up for her at times. He didn't know if he still fancied her but there was still a chance for things if she realised why he felt this way. He was very grown up and had some good insight into Jades situation and her mothers and how it was all related to some friendships that had fragmented over the year. I have always told him to be true and not compromise on love it has to be the right person. I have to agree that they have spent an inordinate amount of time with each other lately and i hardly ever say him at home at times.
On arrival home we sat and ordered a single rose, a teddy and some chocs from interflora for her tomorrow. Not cheap but he needed to do something. We discussed money and i mentioned that i would be retiring he said what just for next month and i said well i won't see 65 so i need to get it now. It upset him, i underestimated i think how much he knew about my health and he said everyday he wonders. I have confused things because i can't bear seeing him upset, i look and act well. He went to bed soon after and i stupidly played Hymn D'amour a song by Edith Piaf which would make you cry even if you were sitting on a happy cloud! So i had a bit of a bawl and now it's nearly 3am i have to be at work tomorrow because there is a huge problem with a holiday for a tenant that needs to be resolved as he leaves on Saturday and it's the last thing i want to do.
I need to sleep, let's see how tomorrow goes.

ER

Woke late again yesterday half the day had gone, i sleep restlessly in the night and always seem to be waking at around 4 and 5 in the morning baking hot......menopause only bought on obviously by the radiotherapy last year nothing to do with my age! :o)

The first thing to greet me was Ozzy's handiwork from the night before...Ozzy is the rabbit who lives in the upstairs hall, not caged and hasn't yet made an escape bid down the stairs. He has an old ikea box on it's side to sit in with various things on top of it including a full length mirror situated outside Joe's bedroom door...this morning there was hay all over the floor and a barricade blocking the way to Joe's room who luckily was out last night comprised of the mirror, the long handled dustpan and brush and what was left of the bag of hay. I cleaned it up then headed downstairs.

It takes a few moments to collate the information around you, whilst in the back of your mind pounds signs are flowing away as fast as the water and i had no idea how long it had been leaking, it became evident that the elbow connector that the workmen had used to move the tap back over the drain and not over the pavement when they did the kitchen had snapped off, so now the pipe on it's own was exposed. My immediate response was to get the tap connection back in place i tried a couple of times without turning off the water which resulted in water spraying every which way and soaking me in the process. So i gave up and headed for the front of the house to turn off the water at the stopcock.With the boys out of the way and still in bed i watched another episode of Borgen the Danish political drama on I player, not something that the boys are prepared to sit through especially as it is subtitled! A little way in i decided to get a drink, on entering the kitchen i could hear what sounded like a waterfall, i looked around everything was in place the boiler was quiet no one was running a bath or shower. It seemed to be coming fro outside so i opened the back door to find a torrent of water gushing from the outside tap!

I jumped in the car and drove to wickes to get a replacement and whilst i was in the area popped into pets at home to find some things to keep the rabbit contained and most of his food, in the process i added cat food, dog food and pellets and straw for the chickens an expensive quick journey.

Back home i managed to fix the tap to great personal satisfaction in doing it by myself and turned the water back on. I had also bought a chisel whilst out to knock out the two broken windows in the garage doors and dislodge the at least 50 year old putty which to date has proved nigh impossible, i however left this job for another day as it is so cold..... I have everything in place for my first foray into glass replacement, but it will have to wait.

I returned to the lounge to find Adam commandeering the TV with awful American teen comedies so Borgen will have to wait too.

So today i have contacted the pensions people and i have told my boss that he really should start thinking about who is going to come and handover from me, as to compound things this morning a letter from the hospital came, just the usual copy of the letter that they send to the doc but it was the first time the word Palliative had appeared in them, i am having more chemo as a palliative measure. I am pretty certain that after this chemo there will be no other recourse, in fact i was told that they wouldn't give me oxalyplatin again because of the side effects i had last time,  and they are!. So i am moving into a different phase. Next week maybe the last time i go to work, i have chemo on the Thurs and see the OH on the Friday if he and i hope he will, as i have forwarded today's letter to HR to send on, advises that i be retired early on the top tier then as long as they get the paperwork to pensions quickly could within a week or two have my pension and the freedom i need to be at home.

I then reflected on a moment that had caused me a bit of concern whilst trying to fix the tap. I started to cough trying to put the connector back on and then felt my breathing was slightly slightly different to normal. Was this my imagination, a cold or the very first symptoms of the tumours that were sitting in my lungs ready to pounce? The cold water rushing over my feet and hands and my frantic struggle to fix the problem may have caused the coughing and probably did, but i am not in a position to just fob these things off. This experience and losing Lisa last week have brought my situation into a bigger internal profile, i suddenly worry that i have left it all too late to make the most of things with chemo due next week. I took feeling well for granted and it was so much easier to carry on as normal.

Wow! ..............................................................................wow it's a lot to take in.

Beginnings and endings

The card i got Joe, makes me laugh whenever i look at it!

It was Joes' birthday on Wednesday, the night before his friends and girlfriend were round, Mark from next door who is the same age and Ollie a couple of roads away who he met when they started reception class together. I like the fact that Joe has friends that he doesn't really remember not having, i moved around a lot as a child and have one friend i guess from way back when.
Jayne and i were both my kids and i remember one day in about 1967 playing outside and a girl asking if we could be friends, we thought that was a good idea and she came round mine to play. About an hour or so later mum answered a knock on the door and found a young girl asking if she had seen a little girl small with dark hair called Jayne, Oh yes she is playing in the back with my daughter. That started a friend ship between me and Jayne and our parents which would last their lifetimes and ours.
Jayne it turned out was an only child like me, my parents were older and hers were on the other end her mum only 18 when Jayne was born. For the next two years we would play together, argue a lot! only children are not great at sharing or compromising, when Jayne's parents went out she would come sleep in my room and on my parents nights out i would be at hers. We always found it so difficult to settle down to sleep when we were together the novelty was too much to deal with, lots of chatting and laughing and giggling. Only problem with that was Jayne suffered badly with asthma, and any raucous behaviour would be quashed by one of the adults coming into the room and chastising us, Jayne may take a pill to help her breathing i don't remember seeing her use a pump in those days.

Jayne and I my 6th Birthday 1968

The days were idyllic and i remember them fondly that's where i learnt to ride a bike and went to ballet classes. Jayne and i and some other friends would go to the cinema every Saturday to watch film foundation movies at the ABC cinema and mighty mouse! in the interval kids would be invited up on stage if it was their birthday, i never got  called. one of the parents would take us at age 6 and then leave us and be there at the end to collect, the cinema was packed with kids on their own who didn't seem to misbehave or cause trouble. But it seems my ultimate joy was the discovery of the toilets and apparently came out exclaiming that there were loads of them not just one.
In 1969 it was time to move on Jayne's dad got a security job in Plymouth where he came from originally and dad got a job in Gt Yarmouth, we couldn't have moved further apart. Jayne and i would write to each other and in the summer our annual holiday was always to Woolacombe in North Devon so part of the holiday would always be spent going down to visit Jayne and family. They in turn would head our way for Christmas until Jayne and i became older and started to drift. I didn't want to go on holiday with my parents and so i saw less and less of her.

Early Teens Gt Yarmouth

In 1983 i decided to go and visit and spent a week down with Jayne, we were already starting to move along different paths, Jayne a more cheeky adventurous character who had been expelled from school for her behaviour. She persuaded me to hitch back to London after the visit with her which we did, luckily within a day and managed to get the last ride home from Chiswick all the way around the south circular to the bottom of my road.
After that we drifted again, Jayne off living in communes and then marrying and having two girls. That marriage didn't last and she was left alone with them. I did visit at some point when they were young and that was the last time i saw her dad Uncle Peter he was diagnosed with bowel cancer and died. Jayne and her mum had their issues and Jayne became overweight and had her struggles. I in the meantime continued to work in London and we lost contact again. I would hear about her through my mum who was in contact with hers.
I would send a card at Christmas each year and through that and the introduction of the mobile phone we contacted again. Jayne came up to stay and met the three boys, she had another man in tow Andrew who quite frankly i could not like at all, very odd..Jayne too different to me but we still got on as always mellowed by age.
We remain in contact now via Facebook Jayne married Andrew i guess it isn't easy being alone, she has started to get some orders for her art which she was always fantastic at. Her girls are grown one with a little boy, she is a grandma already and only 7 months younger than me!
We couldn't be more different i am twice the size of her in fact you wouldn't think we were the same age, but it is still comfortable, we don't know the ins and outs of each others lives, we don't spend hours on the phone or see each other a lot, but we have a shared history and it goes back further than anyone else we know, we know how it feels to be the only one and we have both had our struggle sin life, Jayne i think a lot more than me though.
It would be good to think that Joe will have this and the other boys, Ollie is at Camberwell arts college he painted a fantastic profile of Joe for his portfolio and then gave it to Joe for his birthday it hangs in his room.

Joe's girlfriend Jade and Ollie

Joe is 20 now and it just doesn't feel like 20 years since he was born, he had his first driving lesson on Wednesday and did very well, i am hoping that it means he will pass very quickly and i won't have so much to pay.
Wednesday the 8th was a lovely day of remembering and sharing his delight at the presents that his friends bought him, mine didn't go down too well a kindle, well he shouldn't have in passing one day said that he wished he could read, he thinks he won't but i think if there is any hope that he will technology will pave the way.
He then went to the cinema with his friends, no more down the harvester with the family which is the usual birthday tradition. He is all grown up a man i have lost a teenager.
The following day i found out that Lisa who's blog i had been following and who only two weeks ago i had been sharing messages on Facebook with about her experience as it mirrored mine, had died on the evening of the 8th. I had not known her long but it made such an impact, i shed some tears and i think it brings home the stark reality of your situation, i didn't sleep much last night thinking of Lisa and how her family must be feeling, and wondering when my world will start to change.
She told me to make the most if the time left,
''you can focus on enjoying life, go for walks in green places to soak up nature and the beauty of it. It's your life, a finite time and you should spend it how you want to and who you care about.''
This is what i am aiming towards and thank you Lisa for polarising it for me and setting me on the path, i have an appointment with the OH on the 24th Feb the day after my first Chemo they were going to change it but it think it will be the best thing to do, see them whilst i feel rough.
I called my pensions department today and a lovely lady gave me all the information i needed about retirement on medical grounds, i certainly hope i get my hands on it before the Government play with it, and then have a miraculous cure wouldn't that be great!! :)
So i have started the wheels in motion to make the most of the time i have left, odd feeling to think i will not be working, since 18 i have always had a job even through the recession i have managed to hang on to one when others around me have fallen. ...but whilst i am 'well' and 'healthy' i need to spend the time at home with the boys and planning wonderful adventures whilst i can!

Snow Joke!

Pic i took in New york State Jan 2009

The snow is here at last! there is no way that you will hear me complain about it i love it. The boys Adam and Zaki headed out last night about 9pm with three friends to the park with sledges that i bought last year after the last snow had gone. They were out for about and hour at least and i stayed warm by the fire that i ended up opening up again after christmas. I also adore a real fire, it was one if the reasons that i bought the house there are two open fires in the two downstairs rooms and then in the bedrooms each room has a fireplace with a mantle piece however they are all tiled over my room has pink tiles, Joe's Green and Zaki's grey, Adam's room was an extension over the garage so he doesn't have one. I have to say that i tend towards keeping things as they were. I love original features, the house is 1930's very square rooms but large, Zaki's room is the smallest but would have room for a double bed if need be, mind you there wouldn't be alot of floor space left but still. Joe's room faces the garden and he has a king size bed sofa triple wardrobe, 42 inch tv and on his chest of drawers.... a present he bought himself with his first pay packet and a loan from friends! Adam has a kingsize bed too in his room they are so tall now they need the extra length. Mine however is a super kingsize bed i got in a sale, but only me in it so wasted really but i do love it.
I seem to have rambled and gone off on a tangent, my main concern tonight is my weight i feel huge, very likely because i have been on an eating spree which i tend to do this time of year, whenever i diet it seems to start around Feb/March.
In 2006 i started the lighter life diet that Pauline Quirke has just done, in three months i lost 4 stone!! It works because you just have three sachets of food mix each day and a bar, you stick to it because you do it in a group with other people and each week you don't want to be the one who hasn't lost anything. I also didn't have to think about what to eat and it went sooo quickly.
Now i have put most of that weight back on again, after losing it the first time it crept back on as i haven't yet managed to change my eating habits, then when i had my op it fell off me mainly due to nearly three weeks without eating at all! Ironically when i came out and was up and about again most people told me how well i looked!
Anyway tonight i have reached bursting point enough! The doctor keeps saying how good it is that i haven't lost weight, but i feel uncomfortable and unhealthy at the moment so i am going to do something about it. I need to lose at least three stone, maybe the chemo will help in that quest certainly when i was having radiotherapy my appetite went which is un heard of with me!
Mind you after my op i got to the point that i would quite happily have continued without eating, i used to sit and watch all the other patients get their meals without any pang of regret or jealousy.
I wish i didn't yo yo so much and just get hold of my eating but i am a classic comfort eater and live has been spiraling a bit lately.
I saw the registrar on Thursday and he got me to sign all my chemo papers to agree to have it. I will ahve 4 cycles initially and then they will scan me again to see if it is working or not, if not then i don't know, the other worry is that i will be having oxalyplatin again and i still ahve numb feet from the first time which they will monitor. I did point out that i would rather be here longer with funny feet. I also have to have capecitabine tablets which i hate, he said i could have 5 FU via a pump but that seems a bit of a to do if the alternative is just to have tablets, they dry my hands and feet and i hate having to remember to take them each day.
So i am just waiting to hear from the chemo nurses about when to start, they are the same ones who gave it to me the last couple of times that i have had it so it will be a bit like a home from home and only a 15 minute walk to get there from home through the park which is good.
It is harder i think to go through it the more you have it, i know what the effects of it will be on me and how much i will be affected by the cold. I am known as the ice queen i go through bags of ice cubes because i crunch them at least 4 of five pint glasses a day of drink and ice to the brim. I will miss that as there is no way i can drink cold drinks with oxalyplatin.
Anyway tomorrow!!!!! i will diet, i say this every Monday lets see whether i actually do!!!!


Feb 10th.... I didn't going to have to rely on the chemo i think