Wednesday, 9 May 2012

A list .....Musically

Music

A list ................

Music that Makes Me Happy
  • You're the first my last my everything...Barry White
  • Love grows where my Rosemary goes....Edison Lighthouse
  • Don't stop me now ....Queen
  • Georgy Girl....The Seekers
  • I'm a believer....The Monkees
  • The more i see you ...Chris Montez
  • Photosynthesis...Frank Turner
  • Mr Blue Sky....Electic light Orchestra
  • So here it is merry christmas....Slade
  • You took the words right out of my mouth....Meat Loaf
Melancholic Tunes
  • Alone again Naturally....Gilbert O Sullivan
  • The carnival is Over ...The seekers
  • Ode to Billy Joe......Bobby Gentry
  • Ghost on the canvas....Glenn Campbell
  • Wild World ..... Cat Stevens
  • Hurt....Johnny Cash
  • I don't wanna talk about it.....Rod Stewart
  • A simple Love...
  • I'll have to say i love you in a song....Jim Croce
  • Gallileo .....Declan O rourke
Personal Meaning
  • Say goodnight not goodbye and I find your love....Beth Neilsen Chapman
  • It's too late.....Carol King
  • Morningtown ride..The Seekers
  • Cavatina...Myers
  • The Other Side...David Gray
  • Long Live the Queen...Frank Turner
  • I have lived...Marc Almond
  • Dance with my father...Luther Vandross
  • Welcome to my world...Jim Reeves
  • One day like this...Elbow
To be continued!

Spooky stuff

I have touched on a spooky thing already that happened just before dad died and i thought for my own interest  and maybe that of others i would talk about the experiences i have had since mum and dad died.
To start i am pretty much an atheist in respect of the belief in a God and  if that upsets people i apologise but i think God is something humans put in place to explain why they are here. However i lean towards the feeling that this isn't it because of experiences i have had and i guess because i am open to the suggestion that energy doesn't disappear it just transforms......and ultimately it is very likely that the idea of not seeing my parents and aunts and uncles again and then the boys is too difficult to accept.

Well it started in 83 i guess i went to Plymouth on the spur of the moment and stayed with a friend. Her mother is a medium and invited me that evening to her church, i went along just  out of interest and at the end of the meeting had a message. Talking to dad afterwards the description was of his dad, there were things said that mace me wonder and i duly forgot about it.

Dad was diagnosed in October 95 with cancer, for the next few months he deteriorated and i started to think i should write to him. I had Adam in April 96 and after that on occasion i would think about that letter but something else would always come up. Then Dad went into the local hospital for a bit of respite care and i thought well i could write to him now directly just me and him so one Sunday i sat at the keyboard and wrote a letter just telling him that he was a great dad and how i would miss him and my plans for the future etc. I phoned the next morning before collecting my aunt and  uncle....another long story who were going up to visit him that day, they were over from Australia.
When the receptionist answered she asked if i had spoken to my mum... no i hadn't....she would just go and get the sister......sister asked has mum been in touch?.....no i just wrote Dad a letter and wanted your address.....i am sorry i really feel i need to tell you that your Dad is very poorly and we don't think that he will last the day. Such! a shock and suddenly it was imperative i get the letter to him, my lovely neighbour faxed it for me and the sister read It to him. They say hearing is the last thing to go, and in the end it was a goodbye letter telling him in one bit that i understood it was time for him to go however much i wanted him to stay. The letter was read to him in the afternoon and he died the following morning at 2am. My aunt and uncle knew that he was ill when i got to them, mum had told them......the first she spoke to me was to tell me he had passed the following morning, i never got to the bottom of why i think it was because she didn't want me to drive up there, but i would never have done that. I asked my dad once if he saw his mother after she died, he said no the last time i saw her she was sitting up in bed laughing and joking and that's how i remember her. The last time i saw dad was when we sorted out his garden...i didn't see him after he died.

So! then not too long after dad died i ended up on the phone with mum having an argument and the phone was put down and picked up a couple of times and then i wouldn't answer again. In the middle of that a message was taken on the answerphone, when i played it back it was a man's voice in amongst the white noise saying just Hazel very tersely! my hub heard it too and there was no one it could be, it was as if Dad was frustrated with us and butting in....who knows?

Then what? oh the car Dad gave me on easy payments broke down the day i dropped my aunt and uncle off never did it before or since.On my first birthday after he died i went to go out to the circus with the boys and found it had a puncture......we had the new car i inherited by then so used that.

The car i inherited engine died and i debated about it but ended up getting a new one, the day i picked it up and drove it home as i neared home i saw a car in front with my initials in the number plate, then suddenly at the same time a car in the opposite direction appeared with my dad's initials and i had them briefly in sight at the same time......was that a sign that i made the right decision?

I  was out for a meal with a friend who wanted to go and see the fortune teller sitting in one of the booths, she came back saying that it wasn't so good but i thought i would try. She held my jewelry and talked of chickens, which i had for a short while a year before, she asked about someone passed and said he was ruffling my hair, something he did but i had forgotten about. She also mentioned an iceberg Rose, when i spoke to mum she said that they had one in the garden.....was he around?

Then mum died, just minutes after she passed on the stereo that i had playing Shostakovitch piano concerto came on which always reminds me of her....come to that later. In the week before she died we chatted about the service and she couldn't think of anything, I bought in her mothers bible and opened the page which was John 14 we lived at no 14 and i do now so i read it and it made sense about Jesus preparing a place etc....when i spoke to my neighbour the local vicar she said it was often used at funerals.
Later when she wasn't so easy to understand she said that she wanted a hymn lord 40 years. I couldn't understand more..... the day after she died i was in her box room at home just looking though things, on top of a book case i found two pieces of paper folded together one was a poem Letter from Heaven which made me sob and the words of a hymn lord for the years which we played. Later on my first day back at work in the home we were watching tv and the staff member with me asked if Vicar of Dibley was on, i said have a look and she flipped to BBC 1 and at the bottom of the screen it said lord for the years and the songs of praise audience started singing it. I was speechless!..here is the poem i found, mum wasn't demonstrative but i knew she loved me......this sealed it

Letter from Heaven


To my dearest family some things I'd like to say
But first of all to let you know that I arrived today,
I'm writing this from Heaven. Here I shall dwell with God above
Here, there's no more tears of sadness. Here is just eternal love.
Please do not be unhappy just because I'm out of sight
Remember that I am with you every morning, noon and night.
That day I had to leave you when my life on earth was through
God picked me up and hugged me and He said "I welcome you,
It's good to have you back again,
you were missed while you were gone,
As for your dearest family, they'll be here later on.
I need you here badly, you are part of my plan
There's so much that we have to do to help our mortal man."
God gave me a fist of things that he wished for me to do
And foremost on the list was to watch and care for you
And when you lie in bed at night, the days chores put to flight
God and I are closest to you . . in the middle of the night.
When you think of my life on earth and all those loving years
Because you are only human, they are bound to bring you tears
But do not be afraid to cry, it does relieve the pain
Remember there would be no flowers, unless there was some rain.
1 wish that I could tell you all that God has planned
If I were to tell you, you wouldn't understand
But one thing is for certain though my life on earth is o'er
I'm closer to you now than I ever was before.
There are many rocky roads ahead of you and many hills to climb
But together we can do it by taking one day at a time.
When you're walking down the street and you've got me on your mind
I'm walking in your footsteps, only half a step behind
And when it's time for you to go . . from that body to be free
Remember you're not going . . you're just coming here to me.



Copyright - Ruth Ann Mahaffey


The last two lines were what hit me and i guess they fit in well with the theme of this post. I am sure that they were left for me as the last time i spoke to mum before i had to return back to London and a few days before i returned to find she had deteriorated further, when i said goodbye she said oh don't say goodbye it is so final just say aurevoir!

But it continued a friend was travelling to work with me and i was talking about mum and she said oh i don't know what you feel about this but sometimes i hear people talk to me, a well spoken women said to me a week or so ago tell them I'm fine, just matter of fact and now i realise it was for you..........

There have been so many 'co incidences' that i find it difficult to remember them all but the most memorable one was 4 months after mum died, before she died Adam and i had to decide which school he wanted to go to, he chose a very over subscribed school which is a distance from home so i was prepared to only get second or third choice. Mum and Dad valued education and whatever school the boys got would be a big deal. I was able to go on line in the morning before Adam went to school in March to check the results and just before he left up popped the school .....the one we wanted!!!!!
I happened to be off work that day and i was listening to classic fm on the radio, they do a most wanted top ten where listeners vote from a selection on line. Anyway at number three they played a piece that reminds me of my dad the theme from Schindler's list, a film he watched on Video when visiting once and i have associated it with him ever since. I had been thinking what a shame it was that mum and dad weren't here to celebrate with us and i said to myself when i heard the music if the one that reminds me of mum comes on next then they know...........it wouldn't be worth telling if the next song wasn't Shostakovitch which played just after she died....of course it was!

Since then i went to see the medium at Hastings with my cousin can't remember her name a bit loud for my liking and is on Sky. Happily sat watching the rest and at the end she said i have a policeman and and Singapore, she kept repeating it and no one was answering, Singapore resonated with me as i lived there for a year, the policeman didn't mean anything and i was a bit ahead of things and wasn't listening to Suzanne my cousin i ended up standing up and she said some stuff that made some kind of sense,Suzanne thought it was to do with cancer, this was Oct 2010 on 29th Nov,.....ironically the anniversary of mum's death i would be told that the cancer had spread....you know what i don't remember it much i will have to talk to Suzanne, but what i did remember was as i sat down she said i have Joan here, i still had the mike, my aunt Joan who died the previous Oct i was close to married to mum's brother and they both died in the same year so from 2006 to her death in 2009 i would visit and we would go out for meals etc we were close and she and uncle Joe were more like grandparents to the boys....... someone else in the audience tried to claim her but the medium said no it's for you it's Joan she is here.....that was her last bit of the night.....will have to talk to Suz about what was said again.....oh and the policeman once i listened to Suz she reminded me that her Grandad was  Policeman!

Anyway make of this what you will, the co incidences have meant a lot to me and they have startled me each time, maybe we look for evidence of people being around, i haven't particularly and maybe you could say i am making more of something that isn't there, but it doesn't feel like it.....wouldn't it be great to know that you will see loved ones again whether they go before or come after......i would like to think i will, how lovely to have mum dad and my aunts and ! uncles waiting for me......and my boys coming here to me!

Work and all that!

Well so much for work forgetting about the Laptop had a call last week to remind me to return that and the phone that they gave me which i have never used anyway! Anyway gave me licence to buy a Mac Pro! have become a bit of an Apple girl now so it made sense then everything links up. I have had great delight in buying a laptop for two of the boys and a desktop for the other. Now i have to reign it in apart from finding a holiday for us all!
I have also been informed by the last team that i managed that a leaving do has been planned for the 25th May. As i  was taken ill suddenly i disappeared from my previous post, went on holiday for a week and never came  back! I then moved on to another home to manage.
Anyway it will be nice say a proper goodbye below is the e mail that i sent to the whole organisation.....we provide or rather they! provide care for people with learning disabilities.

Dear ALL


Well! This is an email that I guess I didn’t think I would be writing so soon but here it is!

On Monday I will be leaving  Odyssey taking early retirement. I was diagnosed with Bowel Cancer near enough 5 years ago and unfortunately it spread so that it is very unlikely that I will get better, but still good to live in hope. I have been having chemo for the last month or so which explains why I haven’t been around.

Now! The one thing I can do is encourage you all to read this next bit, memorise it and hopefully never have to use it......



Bowel cancer is 90% curable IF CAUGHT EARLY! but the second biggest cancer killer of both men and women if not.



So the symptoms are......

Change in bowel habit that lasts longer than 3 weeks

Blood in Stools

Anaemia

Pain in the abdomen

Unexplained weight loss



See your doctor and don’t be shy if you recognise any of these symptoms, as you can see I am now quite comfortable talking about bowels!



Finally and most importantly,  I would like to thank everyone that I have worked with, and known during my time with Southwark and then with Odyssey. I have loved working with people with learning disabilities so much so, I did it for over 30 years! I will miss all the Service users that I have supported at Dover Lodge, Notley Street and More recently At the two Frierns , I travelled full circle as I started working at Gibson in 1993 who now live at 164a Friern Road. I aim to keep in contact and visit occasionally.

The word is enjoy!! And I hope all of you throughout this really difficult time with the harmonisation process remember who is at the heart of what we do and how much we get from working in this field.


To be honest i couldn't have left at a better time, all the support staff have had their wages reduced and new contracts put in place, it was due to happen to me in July. Social Care is going to the wall, in all the years i have  worked i have never known there to be less money to support people.
I used to work for the local authority firstly in Lewisham and then Southwark, about 8 years ago we were privatised and  i started working for a not for profit organisation in the same house as before. Working in a competitive market in social care doesn't work, it drives down cost and with that inevitably quality. Wages are being reduced because the company can't afford to compete with other providers. Pay peanuts get monkeys! the calibre of staff isn't improving, to work in social  care you have to 'care' invest something of yourself in providing support for other people. Support workers get less than 7  pounds an hour now, they are expected to provide personal care, work with challenging people, write complex reports, carry out key worker duties, liaise with other professionals social workers, speech therapists etc, recognise forms of abuse subtle and more pronounced, manage in an emergency, support people to attend hospital  and general health appointments, deal with feedback from family good and bad, comply with health and safety, ensure that they report any maintenance issues, be computer literate, work weekends and unsocial hours..... why not just go and work in Tesco's!? I loved to see small improvements in people and enjoy their company everyone has something to give even if they can't communicated verbally i have worked with some  fantastic characters over the years, not everyone appreciates this and just see it as a way of making money, we don't do it for nothing but you have to engage part of yourself in this kind of  work.
Hey ho behind me now, thankfully  Beating bowel Cancer has already set up a health in the workplace session for me to do so it feels like i still have something to offer, i think that is the hardest thing to manage when you are not working anymore.

Wednesday, 2 May 2012

R day and P day.

Well Monday has come and gone, much like any other day except for the first time since 15 i don't have a job.
I had been pondering taking it for a while and the seal was set when i exchanged messages with Lisa Almond who i had just got to know through facebook. She told me to go for it and to make the most of the time that i had, to appreciate the beauty of things around me and spend time with my boys......two weeks later she succumbed to cancer. There are on occasion moments in life that are startling and open your eyes, that was one of them.
So have i made the most of my now endless time to myself days, actually no.. not yet got into a habit of going back to bed after the boys go to school and then sleeping till midday...oops. Not much of making the most there really.
Everyday i tell myself i will keep up in the morning and go for an early morning walk......but no the draw of that sumptuously cosy bed always draws me in, it doesn't seem to do the same at night time as i will quite happily sit up until the small hours.
Mmmmm? maybe tomorrow though with the weather forecast i think it is a big ask.
I need to be more organised, i am not and never have been, everything is on the spur of the moment, i will determine how things will go pretty much minute by minute.
I am also having Avastin and capecitabine at the moment which doesn't help. The capecitabine is making my hands and feet turn dark pink all around the toes and on the palms of the hands, tomorrow i will take a pic so that you can see what those particularly look like, they are also quite dry and the skin on my thumb is bit by bit peeling off....lovely!
I have had it before and had similar symptoms but the dose was upped this time and they have become worse.
At the weekend i attended the Patient Day for beating bowel cancer with my cousin Suzanne. In the morning Lord Darsi gave a lecture about what innovations are coming along with colorectal suregery it was hugely interesting and pitched at a level that we could understand.
Then a break and a chance to catch up with people i knew and get to know others that i had come across on the beating bowel cancer forum and twitter and facebook. Rachel came up and introduced herself and it was only when she said it was banana giraffes that i knew who it was!
The lunch was good but not as impressive as last year, then after lunch i went to a presentation by Tom Treasure a thoracic surgeon on Lung Metasteses. I found that i little more difficult to grasp but most of it i understood, he was lovely but did talk about difficult subjects. I asked a question about my own situation and it laboured a bit so i was a bit concerned that i had taken over a bit. Suz said i hadn't and later i bumped into Mr Treasure in the hall and he took time to discuss my situation and why the various descions about my care might have been made.
I also spoke to the lady who also spoke in his presentation who had been given RFA on lung and Liver from the off and although had a difficult time with it was at the moment cancer free. Later i spoke to her about my lung mets and she commented that because of where they are sited at the edge of the lung they weren't in a place that RFA would work. Disappointing but made me understand more about my situation and why things have gone the way that they have.
In the afternoon a twitter meeting where we all worked out who each other were and since have followed those we weren't following already.
The final part of the day was a presentation to 4 people who had been partiularly supportive of the charity. On the Wed evening previously as i was driving to Zak's parents evening i recieved a call from Mark the cheif exec saying that they intended giving me an award.....so this was the point at which my name would be called. I didn't tell Suz my cousin thought i would leave it as a surprise, i was second to be called up and had my pic taken with a certificate and was given a gold bum badge and flowers which as i type smell glorious in my lounge, mental note to continue buying lilies after they have died, the smell is so much better than air freshener or the dogs!!
After the day ended a group of us trudged through the pouring rain to the pub, there were little rivers everywhere!! It was a good evening and Suz and i made various attempts to leave but in the end were the last to leave with Alison except for Russel and Dafydd who were there for the duration!
Unfortunately my certificate suffered rain damage on the way home even in it's frame and it is soggy and damaged around the top right hand corner, but never mind it was still a proud moment to get it. Again i will pop a pic in sometime, i am on the work laptop at the moment.... that work haven't asked to have back!! so i am restricted in what i can do with it. Kind of hoping that they will forget about it in time as it is very useful!

Tuesday, 17 April 2012

Thump!

A day stuck to the sofa, yesterday i tackled the garden, mowed the lawn potted on some plants, tidied the front garden, cleaned out the chickens ..... today i am shot. Woke up with the most horrendous headache, went to sleep with a toothache not sure which is worse, hoping the tooth will sort itself out, or leave me alone whatever works.
Just want to be able to move around as soon as i do thump thump thump!
Woke up this morning to the sound of children counting down until they opened the new school gates. The school is literally opposite my house and two years ago they started updating it. They have kept a couple of the old Edwardian buildings, it was built in 1905 and then added on new modern buildings. I have had a crane and various builders and trucks skips etc trundling past the house ever since.
All my three boys went ot the school but Zak the last left in September so we didn't get the benefit of the disruption at all!
It is nice to hear kids again though and they have moved the playground so that it is opposite us, a lost opportunity as i said to the boys to spy on them whilst they were at school!
The dogs are going to be fed up today as i cannot contemplate at the moment taking them out, they will ahve to make do with a visit to the garden.
Thump thump thump!
I ended up talking to the bowel cancer nurses about my thumping head, they suggested i call the chemo unit. I did and spoke to the locum chemo nurse she said go to A and E. Spoke to Louisa who said much same get checked out. Phoned my GP and a new receptionist said no sorry no appointment, in the past they have managed to fit me in. Still sitting on the sofa and thinkg that i really do not want to have to go anywhere but this head will not shift. Think i will have a bath and see how i feel then, the boys have bought themselves something to eat so that i don't have to cook.
Fed up with not feeling 100 percent i know that a lot of people feel worse than me but i want to be able to get on and do things and it seems i take one step forward then end up two steps back almost immediately. Chemo is really wearing, tempered by the fact that it is giving me longer time i hope but in the middle of it all it would be easy to give up.

Thursday, 12 April 2012

Busy Day

Woke up this morning to get Adam off to school to finish some course work for his GCSE's he has left it late and quite honestly hasn't done much in the way of revision.  Mind you i was no different i don't think having such a disorganised mother is very helpful.
Then took the dogs for a walk through the park to go and have my line cleaned and bloods taken. I tie them up for a little while, we used to do that in the 70's with my dog and it wasn't such a big issue, the dog would wait patiently for our return as my dogs do now. However on one occasion i returned to find that someone had phoned the RSPCA as she thought the dogs had been abandoned. I love animals but i do despair these days of the way some people cosset them, my dogs were fine i came back they had a walk that they may not have had otherwise!
Then headed off to watch the boys singing at the school of rock Zak was fantastic and Adam was charismatic as ever i was really proud of them both.
Came home intending to tidy up, every room in the house is a real mess the fallout from having chemo and just not having the energy to get things done. Unfortunately the boys are not house trained i always found it easier to do than argue with the about when they were going to help me out. Joe lives in his room and keeps it tidy at least but Adam's room!!!!! typical teenager...Zak is heading that way but then my room is full of clothes that need to be sorted and put away but i never have the energy!
It isn't something that i feel i can ask for help with, the boys dad still lives in the house and is not working and was helping out when i asked....but i hate asking!
We had a big row then about a week ago, i headed up to Norfolk to attend a friends wedding and before leaving we talked which degenerated into a big argument during which is was told i have cancer because i am a bad person and that is God punishing me... i asked why his life hadn't worked out so well and he responded to that by saying it was because he listened to me! So a double whammy....he is Moroccan and knowing him i know he probably believes it but also that he was lashing out. But what it did do was confirm the need to sort this out once and for all, i told him he should leave he said 'when he gets his money' which he knows i can only do by selling the house which is the last thing i want to be doing under current circumstances.
Hey ho!
I meant to write more but i need to sleep always so tired of late and so much to be done!!! where did i put that wand?

Friday, 6 April 2012

Bowel Cancer Awareness month....pros' and cons

I haven't written for a while and this is April Bowel Cancer awareness month......in terms of symptoms i don't think i can write more than i have see my post symptomatic neglect.

In respect of awareness month i thought i would write about what has changed since being diagnosed with bowel cancer....what happens if you don't get diagnosed in time and you don't know the symptoms....well for me anyway.


Con's
1. Pain certainly i think i was more unusual to have been diagnosed in an emergency and unfortunately for me it wasn't in my local hospital a 15 minute walk from home, it was in Luxor Egypt on holiday. That's when i knew there was a problem.
2. A very uncomfortable plane journey home due to the air pressure on the tumour, not sure why it didn't happen on the way out but very glad that it didn't.
3. Admission to the east surrey and sussex hospital in Redhill, nearest to Gatwick and operation 4 days after landing to remove the tumour after being told that it was likely malignant.
4. Huge scar from just above my belly button to just above my groin, horrible...... bikini's are out tankini's in.
5. Recovering from major surgery
6. Sitting in hospital totally reliant on help from others, having to go to the loo escorted!!!
7. Having very invasive procedures and embarrassing conversations about poo and bowel movements.
8. Having so many CT scans that i have lost count, and before each one having to drink copious amounts of barium meal....looks like milk tastes like orange soooo wrong.
9. Having a dye injection during the CT scan that makes me feel like i will wet myself!....i haven't to date!
10. Two MRI scans ...very noisy!
11. Being told that the cancer had spread to the lungs.
12. Being told after a few months of telling them something was up that there is a tumour in the pelvis.
13. Being told various different things by various professionals about my chance of cure.....second bite of the cherry to there is nothing that can be done....having your hopes dashed!
14. Chemo making me feel ill.
15. Not being able to make plans for the long term future, not seeing grand children, not being part of important days in my boys lives.....leaving my boys motherless at an early age!
15. Chemo and Radio precipitating copious visits to the toliet....often in a hurry!
16. Telling my children that i have cancer.
17. Telling my friends that i have cancer.
18. Telling my family that i have cancer.


Pro's....are there pros in having cancer well yes there are!

1. Losing weight without even trying before and after my op, people thought i looked so well!!!!!
2. Realising the strength of feeling i engender in people, it isn't often that friends make comments so personally, and tell you how much they love you, cancer makes people say what they feel more than they may usually.
3. Having more interest in the world, i can't walk through the park or see a lovely sunny day without thinking how wonderful it is.
4. Having the time to sort out my affairs, not a con so much but really i am lucky in a sence to know that i have! to finish off all those things, photo's sorted, de clutter the house, update my will etc.
5. Meeting fantastic inspiring people through beating bowel cancer, knowing people who are going through the same thing.
6. Retiring early at a time when to have stayed working would have been so diffuicult for me, as social care is going to the wall...... things come to me when i need them...would rather a different way of course. If i stayed till july i would have a 5 grand drop in salery!
7. Having time to tell people how you feel about them and to leave something behind for them in the future, cancer gives you time to plan......
8. Allows you to live in hope.


Ok the con's outweigh the pros as it should, no one wants to have Cancer but i don't think that it comes in a completely negative package. 


The best thing is to be aware, know the symptoms


Blood in poo without itching,


Change in bowel habit that last more than 3 weeks esp with looser poo,


Abdominal pain


anaemia

Bowel cancer gets left people don't want to talk about bowel habits, other cancers maybe caught early becuase people are more likely to discuss the symptoms.


But bowel cancer is the second biggest killer of men and women, and it has a 90 percent chance of cure if caught early!!!!!