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.

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!

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.

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?

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!!!!! 

Another Taken By Bowel Cancer

As i get more involved with people who have been affected by bowel cancer i become more aware of what a deathly disease this is.....i hadn't realised already? well yes but i was diagnosed in Aug 2007 nearly five years ago, i still feel 'normal' i look 'normal' i am still working although i am soon to give up, it hasn't affected me as quickly as others. Two lovely people who i met through having a shared experience of Bowel Cancer have died in the last two months and whose blogs i followed on here....Carole and Lisa Lisa died on the 8th Feb and Carole last night the 16th March. I am so sad to hear of their passing and i think of their poor families coping without them for the first time.
It also brings it home to me that this is the path that i shall face at some point, and this is something that my boys will have to face in their future. I have been lucky so far, Carole was diagnosed in 2010 and had such a hard time since then, i need to make the most of the time i have whilst i feel well.
I had my second round of chemo on Wednesday and even before i left the chemo suite felt rough, not long after arriving home i went to bed for the duration but had to wake myself up to take chemo tablets later on, i was also physically sick just the once but this is not usual for me. Three days on i am still feeling rough a metallic feeling in the moouth and awful peripheral neuropathy, i was actually in tears on Thurs with how i felt and sods law it hurt like hell to cry!!! that'll teach me. It is gradually wearing off but the thought of having 6 more cycles makes me feel ill in itself. I hope that in a week or so i will be back on form and forget how this felt, it's a bit like childbirth give it a bit of time and you forget how bad it was. I have! to persevere, oxalyplatin worked well for me last time and the Avastin seems to be relieving the pelvic bleeding already, but goodness i understand how people can just give up. I want some more quality time now i am not working to squeeze holidays and things into with the boys, it worries me that this will become so debilitating that it will eat into that. The hope is that it affords me more years to sort out my affairs and make memories for the boys.
I am rambling now time to go.
RIP Carole x x x

More info on the chemo trail.

So i haven't posted for a while so i need to recap on what has been happening over the last month or so.
I had my first cycle of chemo, Avastin Oxalyplatin and Capecitabine tablets. The infusion went ok i sat and worked on some staff competancies on the laptop whilst i was sitting there. Dee the chemo nurse who i knew from 2007 was there when i had my PICC two days previously, during my last cycle last year she was still on maternity leave so it was really lovely to see her again. She wasn't there on the Thursday though so i made a request to change my day to  Wednesday just so i could see her, it makes a huge difference to sitting there all day.
Went home and later that evening went out to the book group. Went to bed as normal and found that in no way could i settle to sleep, the Dexamethasone strikes again! it is a steroid to help minimise sickness but i react badly to it, finally fell asleep at 4am.
The Friday feeling very tired and a little rough and my shoulder started to ache....not the one with the PICC though come Saturday i felt awful, not nautious just not well somehow, i do remember thinking at one point if this is going to be how i feel i don't want it anymore. The boys rallied around really for the first time so i must have looked bad, and then in the evening i had a nose bleed my first one ever! Poor Zaki was in the room with me, he has had them often but my nose was streaming and he ran round to get paper towel for me, he wrote on his facebook status my 'mum is ill and she had a nose bleed i feel sad'.
By Sunday i was feeling better, for the next week i went sick from work and just vegged out infront of daytime television. I remember on Saturday i felt really well and got back to getting the house in order and doing the washing. Since then i have been fine, we wonder whether the awful pain in my shoulder was due to deferred pain as there really wasn't any reason for it to have occured.
On the Friday i also had a visit from the Mac Millan nurse as i have now been referred to their team. During the discussion i became rather weepy, she was lovely and i think she will be just the kind of person i will want to deal with when the time comes. We have agreed that a counsellor will call and make an appointment really just to go through how to break things to the boys when i think i need to. I am stil hugely affected in this decision from the experience i had with my dad and to a degree my mum. I knew Dad had cancer for 9 months and that i was going to lose him. This was compounded i guess by the fact that he was the first person i would lose who meant so much to me so i was getting my head around that emotion too. Everytime i saw him all that was in the back of my mind was that was i going to lose him and the feeling of holding things in is still tangible trying to keep up spirits everytime i saw him rather than break down in front of him. In hindsight this wasn't the best thing to do but this was nearly 16 years ago and i was all over the place to a degree.
I just don't want my boys to look at me and start to miss me before i have gone, i want our days to be positive and normal as much as possible whilst i am still feeling totally normal myself. When i start to feel that the cancer is affecting my health then i think there will still be time to let them know that i won't get better and prepare them for life without me as much as i can.
I went back to work on Tuesday and recieved the letter confirming that the OH has approved my request for early retirement on the top tier which means that i get my pension made up as if i had finsihed at 65. Everyone i tell is so happy for me, and everyone says it is the best thing to do and i know it is, but for me it is bitter sweet.  A very scary step, i still have bills to pay and a life to lead and i hope that there is enough to do that.

RIP!

The other thing that has happened too is that i have the higher rate of DLA. I took my lovely car into the garage yesterday and was told that she can't be saved. The engine is on it's way out and can go any minute. So weird because now i have DLA i can use the mobility component to get a brand new car, i get servicing, tax, tyres windscreens, insurence free and a new car every three years for a bout 50 quid a week out of the 125 a week DLA i get. I feel a fraud to be honest but without it i wouldn't ever be able to afford a new car let alone a brand new one, i am going to make the best of this to get the car i really want may mean up to 2,000 pounds advance payment, but i will see what i can sort out. At least this is rather exiting!!