Sunday, 25 November 2012


I am going to try and get a couple of weeks worth in this blog, but I might have so split in into two...I will see how I get on.
So, there I was, one morning a couple of weeks ago, sitting having my morning cup of coffee and fag, deep in my own thoughts before everyone else got up for the day. I really hate it when I am woken up abruptly and immediate demands are put on me. That just pisses my whole day off, so I like half an hour of peace first.
Anyway, there I was and it was lovely and peaceful. The next minute, there was an almighty crash. I thought, bloody hell, that sounds like a wardrobe or book case has crashed onto the floor.
Then I thought, hmm, we dont have a book case upstairs and the wardrobes are nailed to the walls. Immediate panic set in. Christ, it must be Ady then!
Then I thought, bloody hell, there is no noise, no “Ouch” or anything! Perhaps he has passed out or something..and I raced upstairs.

Well, yes, there was Ady, sprawled across the bedroom floor.
“Morning darling” he said
‘He seems alright then’ I thought so I said “What the bloody hell are you doing?” (does the question mark go before the speech mark or after, I can never remember)anyway,
He said “Well, I was getting out of bed and I got my toe caught in that bit of begging on the floor there. I just couldn’t stop myself from going down like a sack of shit and I nearly smacked my head on the mantel piece”
I was nice and checked that he hadn’t REALLY hurt himself or broken anything, but he had walloped his elbow and his knee, so I helped him up.
That’s right, it was the morning of the CT scan cos our neighbour sent a text at hospital asking if everything was OK cos she heard it!
As I helped him up, he said “See, I told you I was stiff in the mornings”
I said “Yeah, but you are stiff in all the wrong bloody places now up you get!”
On the Saturday evening, we had friends around for the evening and Ady was telling them about his fall. We were having a laugh and a joke about it, as you do, they are a great bunch of friends with wicked senses of humour. One time, I had a backwards dinner party where you started with coffee and mints, cheese and biscuits, then sweet, then main and then the starter...Dave, the cheeky bugger, turned up with an empty bottle of wine.
Anyway, I digress. Ady told them that if I was at work that morning, he would have had to wait on the floor until I came home to help him up cos he couldn’t get up himself.
I thought bloody hell, I really wonder if he realises how bad that is...I dont think he does really.

I will do the second part in a separate blog cos I am a celeb is on !!

Steph's day Out

Steph has always been a bit of a singer and is one of those girls who wants to be famous.
She spends a lot of her time on her keyboard, looking up on the internet how to play it. I used to teach her the piano when she was younger, but we had to get rid of it cos it took up too much room and was a bit noisy for the neighbours!
The teachers at her school have noticed she has a bit of talent in this area and are giving her free singing and keyboard lessons which Steph is just thrilled about!
I noticed on Facebook, that a company called Audio Sorcery were doing a competition to win a Gift Daze singing experience. Oooh did my eyes light up !!
All you had to do was ‘like’ the page and at the end of the month, they would pick a winner. I decided that with our luck, there was no way that we would win if it was down to me, so I got to work on all my facebook friends and asked them all to ‘like’ the page thus entering them into the competition. That was everyone was a winner, the company got lots of ‘likes’ and Steph had more chance of winning.
The end of the month came, and my lovely friend Sal won the competition and gave it to Steph. Bless Steph, she was jumping up and down with excitement. Charlotte, on the other hand couldn’t think of a worse torture!
Carol messaged me on Facebook to say she had been told about our traumas and said that instead of having the two song prize, she was going to up it to five songs with a couple of free CDs !!
Oh My God, I dont know what to write now, except to say that not only was Ady pissing himself cos of his surgery, but now Steph was too with pure excitement!

I rang Paul (I think Carol does the advertising and videoing bit and Paul and Dale do the musical recording bit) and he was lovely. Steph was booked in for October half term. In the mean time, they sent her a CD with hints and tips on how to practice her songs, so off she went to practice...a lot.

Steph decided that she needed a posh frock to look the part cos after all, she is going to do some proper recording and I decided that no, she jolly well doesn’t, trousers and a top will do just fine thank you very much!
Poor Steph decided that I was going to ruin her day cos she ‘had nothing to wear’ *sigh*. That girl has a room full of clothes, yet she never has anything to wear....
She did eventually find something to wear, and decided that she was glad she didn’t buy a dress cos perhaps that would have been a bit over the top. I didn’t like to tell her that mother knows best, I will leave her to suss that one herself.

So, the day finally came, and off we went. It is just outside Tunbridge Wells. Frant, actually.
We got to the studios, not very sure what to expect, and we were greeted by Paul, who was a very cheerful chappy who made you feel very welcome indeed and he showed us into the green room, which had green things in....
I was expecting to have to sit in a waiting room on an uncomfortable chair or something waiting for three hours, but no, there was a lovely sink your bum in sofa and a kitchen to make coffee.
Dale was recording Steph, and  he actually asked me if I wanted to come into the studio to watch it all! Brilliant, I thought, what fun. Steph thought he was really pushing his luck when he asked if we wanted to do a duet though.
Dale was brilliant, he really was. Steph was nervous at first but he was very reassuring and praised her singing and she very soon got into the swing of it.
Time flew very quickly and Steph had recorded her five songs.
She sang Adeles someone like you and Make you feel my love, she sang Valerie by Amy whatsername, Beautiful by Christina I cant spell her last name and Man who cant be moved by that bloke on ‘The Voice’...erm....Script or something..never heard of them myself.
Steph had a really fantastical time and she has decided to sell her CDs for £5.00 and is sending the money to The Pickering centre in Tunbridge Wells who have really helped us along the way.
She may be a teenage madam at times but she has a heart of gold that one.

My little Steph has quite a soulful voice but if you want to hear it, then you will have to buy the CD yourself!! All proceeds to charity !!

I want to plug Gift Daze because they couldn’t have been nicer. They didn’t have to give us what they did and it’s not often you have a company that thinks of people before their profits!
And whats more, the CD is very professionally done!!
Thank you Carol, Paul and Dale. Steph had the best day and it will be something she will remember for ever. I know what to get her for next years birthday now!!

If you want to have a sing song and have a recording experience, they do all sorts, parties and everything, I fully recommend this company, they were absolutely brilliant!!

Review Time.

As I am up earlier than everyone else, and it is lovely and peaceful, I thought I would get a bit of blogging done, cos I am quite behind. Things seem to be trotting on a pace at the moment what with one thing and another. I really want to tell you about Steph’s studio recording experience and her CD she made and I want to tell you about Charlotte and her exams and how Ady is doing, but this one will have to be about the benefits *sigh*

So, back in the summer, if you remember, I was called to a ‘Back to Work’ interview at our local job centre plus office. I was a bit miffed at the time cos I do work, looking after two elderly people in the community and lunch time supervising at our local primary school. This fits in very nicely for us as I can change and swap things around at short notice to take Ady where he needs to go. Betty and Brian (my two elderly people) are only too happy to oblige as I have known them for years and they know Ady and the girls and our situation.
So anyway, I went off to see this chappy and he said that he just wanted some information on me as they had none and it was great that I was working. He was quite helpful actually and made sure we had everything we were entitled to. He told me that it said on the computer that we were going to be reviewed in January 2013 for ESA (employment support allowance or the old incapacity benefit) to see if Ady was now fit for work. We could then go on the ‘work related’ benefit or some such thing. It meant that he could work a certain amount of hours and still claim benefit to ease him back into work. If he found it too much then he could go back on ESA...I think...
So having gone to the interview with my hackles slightly raised, I did come away feeling that it was helpful and he gave me his number to contact him at any time.
I told Ady all about it and we agreed that it was a very good idea and it was great that we had a focus for the future and Ady had a goal to reach in January.
Ady said that if he could get back to work earlier, then he wanted to, but I said no, he should wait until all the results are in from his cancers (his last one would be at the beginning of December) and if he was clear from those, then we are rocking, let’s have a nice Christmas and then we can get back to normal and start again in 2013. With the trouble we had had with the benefits system, there was no way, I was cancelling anything!!
Ady reluctantly agreed, although was quite unhappy about claiming benefits if he was going to be feeling well enough to start getting back to work earlier than January, but did agree that it would be a bugger if we had stopped the benefits and the December PSA test said his cancer had come back....Christ, can you imagine it!!
This whole conversation and Ady’s dilemma was back in the summer, May, I think, when he had finished the radiotherapy and was on the hormone therapy, ready to finish that in August, PSA test in September, Bowel test October and results in November, another PSA test in December, then back to work in January. Easy peasy. His GP did explain to him that he has been through quite a bit over the last year or so with his cancers, and he also has his arthritis and other co-morbid conditions to think about..why the rush back to work? But that is Ady for you, he has a very strong work ethic in his blood and will be out gardening and farming in all weathers, never wanting to let anyone down.
Ady was very fatigued and a bit confused during the hormone therapy but actually felt no arthritic pain at all, or was it during the radiotherapy he felt no pain...I can’t remember now, anyway, it’s neither here nor there really, the fact is, that he felt very comfortable in his bones up to the second week of August, two weeks after finishing the hormone therapy. He was looking forward to and planning on getting back to work.
I think I told you all about the bone pain Ady started getting and his morphine and scans and stuff a few blogs ago. The problem is, that I am having to write this blog now because the DWP have sent Ady’s review form early and they want it back by December 11th, all twenty pages filled out. Bloody hell, I feel like I had only filled the last one out a few weeks ago!

The last time I had to fill these poxy things out, I very nearly lost all my hair and the plot. At one point, I will admit, I did seriously consider asking our GP for some tranquilisers or something to help me cope but I dont like eating chemicals and now I am glad I didn’t cos I managed without quite well in the end.
This time, my lovely new bezzie from Perennial has offered to help. When she came to see us over the bathroom saga, she was very surprised that Ady was on the lowest rate DLA and certainly feels he should be on a higher rate. I told her that I had to fight hard to get that as we were turned down in the first place and was going to give up with the whole bloody thing.
She also has offered to help with the review in January and made a date for the 3rd. At the same time, she was going to get a change of circumstances form from the DLA and get a higher rate for him.
I am a funny cow that likes to know exactly what is going on at all times and because I have been doing all this on my own, felt a bit uneasy that someone else was going to take over. Blimey, what if she didn’t know how to fill the forms correctly and what type of wording to use. What if I am wanting her to write one thing and she wants to write something different and hers is wrong.
I rang Sue to tell her that the forms had arrived early and we had a good chat about it all. I was really relieved that she DOES know exactly what she is talking about. She can even fill the DLA forms out with me and Ady and then she is going to take them away and deal with them. Everything is going to go to her and she will do the appeals for us and everything.She is going to take away all that worry.
 Christ, what a relief, I can tell you. All I am having to do is collect information like all his hospital visits over the last and the next three months, go through his medication and write down what he takes and when with side effects, I have got a copy of his bone scan and the lovely Drs receptionists have typed out all his Drs visits and blood and nurses visits for me. I have to look up all the telephone appointments we have had, which there have been loads and write a diary of everything I have to do for Ady; thats an eye opener!. Then all I have to do is hoover the house and bake a cake for Sue to come on Thursday.

The forms have arrived in the post and I haven’t even looked at them.

Poor Ady is in a terrible state, thinking that they are going to want to send him off to an ATOS medical and then deem him fit for work. Ady wants nothing more than to be fit for work but he knows that he cant even walk from one end of the house to the other without the most hideous pain in his feet and on most days, cant even stay awake for more than 3 or 4 hours at a time.
I actually feel desperately sorry for him, he is in absolute turmoil and sinking into a depression, desperate to work and provide, worried people think he is being lazy cos he can look quite well sometimes but just simply struggling. His hands were so weak and painful the other day, he couldn’t get the lid off the Lurpak.

I will admit that at the moment, things are quite stressful with the review hanging over our heads, but thank goodness for Sue!

Saturday, 17 November 2012


Our bathroom has always been pretty hideous. The bath was cheap and plastic. Plastic baths are OK, but not when they are made of thin cheap plastic!
Anyway, it has suffered years of abuse form the girls when they were younger. Every evening, the girls would play in the bath with their toy figures such as kings queens and horses mainly, and they also found the bath a good place to play when it was empty.
Each game would usually end up with the evil witch being nasty to the princess and the prince riding along on his horse to save her. This means that the whole thing would end up in a lot of punching, slapping and screaming while the prince and evil witch fight. During each fight, lots of things would get dropped in the bath and eventually, the poor bath would get hairline cracks in it. That is how cheap it was!
Just in case you were worried, the prince always won and him and the princess would live happily ever after.
So, Steph was having a bath one evening and was singing away as usual. I noticed water dripping through the dining room ceiling. Well, the prince, princess and evil witch had cracked the bath and the water was coming through the ceiling and the light!!
So after that, we could only have showers, much to Stephs horror cos she does love to wallow in a bath that one. Ady put patches of silage tape over the cracks.
The shower was one of those hideous ones from the taps with a pully knob thing to make the shower work or the taps work. Well it never worked very well at all and as soon as you turned the shower on, the flipping hose would woosh off the end of the shower head, so that got stuck with silage tape too. Bloody thing, even Ady with all his urine woes could piss faster than the shower!

Ady will always make do with what he is presented with, but I never liked him using the shower and climbing in the thin crappy bath. It’s slippery at the best of times, but when you are in his state of ill health and decrepitness, it’s time to think about a replacement. Also, with his arthritis, he will just struggle on quietly until he has an accident. Realistically, the whole bathroom setup is not geared for Ady’s safety now or in the future.

There is a website called Turn2Us. They are fantastical with all things benefits related and charity related.
I told them of our problem and asked if there were any charities or organisations that could help with the funding. If you don’t ask, you don’t get and it was worth a try cos there is no way we could afford to do it ourselves now.

They gave me the number of a charity called Perennial. They were called The Gardeners’ Royal Benevolent Society but have had a name change. I rang Sue, who is now our case worker and she was lovely. As Ady has been a gardener all his life, she was sure they could help us.
During all this, I had got mark, our local builder and friend to come and look at the bathroom to see what could be done. It is all a long story, but we ended up deciding to make Stephs room bigger because you could literally fit her bed in and a foot of space at the side and that was it for her room, make the bathroom smaller and put a proper shower in. That way, if I have to wash Ady (God help him) then it will be easy for me and we can also put grab rails if we need, quite easily.
The walls were all simple partition walls, so very simple to move.
Mark had a spare week before he started on a big job and he was happy to crack on with the job and worry about payment later. Our children were in the same class at school and I worked with his wife so there is a lot of trust either way.
The work started on the Monday, and Sue came to visit us on the Thursday I think it was. It was the day they were doing the pipe work, I know that!
The house was in a complete mess cos Stephs room and the bathroom had been cleared out and all the clothes were all over the dining room table along with goodness knows what else scattered everywhere. I was momentarily embarrassed when she turned up actually.
 Poor Sue walked in, sidestepping all the junk into the sitting room to find Ady out for the count, snoring away while there was banging and drilling going on upstairs.
I woke Ady up and we all sat down to go through the finances and benefits ect to see if they could help.
We were half way through our cup of tea when blow me down, water came pissing through the ceiling all over my washing that was on the table. (that’s how I know she came on the day they were doing the pipes). I shouted up to Mark that we were having a bit of a water problem and the next minute, the poor guys (there were two of them and they were both called Mark, apart from dangerous Dave the electrician who drilled through his nail that I had to administer first aid to) had to make a hole in the ceiling to let the water through, so there they were with hammers smashing holes in my ceiling. There was plaster, dust, water and general crap everywhere. All I could do was laugh. I thought bloody hell, here is this poor woman who has driven an hour and a half to try and help us and the whole house is fecking carnage. No point trying to be posh now!!
 Sue said that she was very sure she could give us some help and she needed to go to the committee and ask because it was more than they usually give out in one go.

Well, these people are absolutely BRILLIANT!
They have actually paid for the bathroom to be done. I actually can’t believe it!! How lucky are we !!!
If I ever win the lottery, I will be paying them back, but for now, it is a grant that they gave to us, for free. It doesn’t matter how I write it, I still dont believe it!!
Mark is happy to wait for the money for Stephs room cos he is such a love, and anyway, I did bake him lots of cakes and quiche!
Not only did they give us a grant, Sue has become a bit of a mentor, although she does wonder how I keep smiling and still find things amusing...she doesn’t realise I am mental yet! I think she feels sorry for us actually.

I got Steph a lovely bed and chest of drawers from the British Heart Foundation shop and the YMCA place, painted them up and they are as good as new. I am chuffed to bits with the chest of drawers cos it is one of the old types in the dark wood that are in old peoples houses with the mirror on top. They just dont make them the same these days.
I will tell you more about Sue from Perennial when I tell you about the DWP saga that is about to happen.
But for now, Sue from Perennial, you ROCK and THANK YOU !!!!

A Week Of Woe

It is just over two years since Ady was first diagnosed with colon cancer. I look back over those years and think to myself ‘bloody hell, what a flipping journey!’
Our girls have grown and matured so much. I am so very proud of them and the way they have handled it all. They have learnt so much more about life and how to manage it than your average teenager. They have experienced some nice, and some not so nice emotions, from pure elation when we get the all clear to absolute devastation and sadness at each diagnosis and tumble. In the middle, they are learning how to deal with worry and angst.
I have read that book by John Cleese and Patrick Skynner on Families and How to Deal with Them..twice, actually, and as long as I help them not to be scared of any emotion they are experiencing at the time, and help them through it, then John and Patrick say I am doing OK!

Anyway, lets get back to telling you about my week of woe.
Well, Ady has been having his CT scan and blood test for his two year colon cancer screening. We go and get those done and then see the colorectal nurses for the results. Well, we were supposed to be seeing them last Friday at 9.30 as it happens. On Monday, one of the nurses phoned and asked if we could go in earlier...I will tell you the conversation we had;
Nurse: Hello Emma, could you come in earlier on Friday, say about 9am cos we are busy and double booked so I am trying to see if the younger ones can come earlier.
Me: Yes of course, no problem. Do you have the results there cos if you like, if he is clear, we are happy not to bother with the appointment and save everyone’s time, just tell us on the phone.
Nurse: Erm, I dont have his notes on the screen, so if everything is fine, then I will call you back in ten minutes and chat on the phone, otherwise we will see you Friday.
Me: Lovely, thank you.

Well, she didn’t phone back.

Ady was talking on his mobile at the time, so didn’t hear the conversation, but asked who it was when he had finished.
I decided to tell him that it was the nurse asking us to come early on Friday cos she was busy. I didn’t see the point in worrying him for a week. He is having enough trouble with his feet and wrist, without having an extra woe, and anyway, she might have been busy and got sidetracked.
Tuesday came and went, and no call again. I started to think ‘Oh bugger’(bad choice of word there I spose, under the circs), but I thought, ‘she has gone for option B and that everything is not alright, so she will see us Friday....shit....oops, another bad choice.
I kept it to myself as I didn’t want to worry the girls or Ady because what if she had just got side tracked and then forgot. What is the point in all of us worrying, perhaps needlessly.
I’m not ashamed to admit, but the week took its toll on me a bit. I didn’t sleep very well and at one point, I was ironing at 3.30am and all I thought about was what if the cancer has come back, how are we going to manage.
My thoughts would go from ‘The cancer has come back’ to ‘she has forgotten to ring us’, to ‘perhaps they have found radiation damage and want to investigate’ to ‘they just want to see how he is this time cos we usually do phone appointments’
And of course when you are thinking that the cancer has come back, your thoughts go from arranging the funeral again and thinking about music and sandwich fillings to what treatment they will give him and will he be able to survive chemo.
When you think about that she has forgotten to ring us, you also think that if she has forgotten to ring us then it isn’t very good practice and that is unlike her and does she realise the stress she is putting me under. Perhaps she didn’t realise what she was saying and how I was taking it and hanging onto that call back and the impact of “Otherwise I will see you Friday” had. That made me a bit cross actually, but our nurse is lovely so I wasn’t cross cross, more put out cross.
Then with the radiation damage, perhaps they would want to do some more tests to make sure it is that, and then what would they do about it anyway?
Then, with the ‘perhaps they just want to see him’ bit, I thought, ‘that’s nice, they are very lovely.
Bloody hell, and then you go all the way back to having horrors about funerals and sandwiches. Christ, I went on like this for a whole week!!
And all the time, looking at Ady trying to see if he has that sort of cancerous look about him people sometimes get and wondering if this is the reason he has such severe fatigue.
By Wednesday, I had worked myself up into quite a state, but I didn’t want to ring the nurse to tell her she hadn’t rung me back because I didn’t want to put her in an awkward position if the cancer had come back. They like to ideally tell you that sort of thing in a quiet room whilst handing out the Kleenex, not on the phone. And anyway, our nurse is nice and she would never have intentionally created my turmoil.

Thursday came, and so did the postman in the afternoon. I can sniff out a hospital letter from a mile off. I wasn’t expecting a letter from the hospital but one had arrived. I thought bloody hell, the last time we got an unexpected letter, it was from Oncology with an appointment that they had sent before anyone had spoken to us to tell us we needed and oncologist. I bet the same thing has happened again and the poor nurse was waiting to tell us on Friday but someone has sent the letter too soon again.
It was a letter from Ady’s surgeon and had just one line.
Dear DrK,
I am pleased to say Ady’s follow up CT scan has shown no evidence of recurrence.
With best wishes
The surgeon.

Christ, was I pleased and relieved to read that !!!
Thank God the nurse just forgot and didn’t realise the angst caused. I wont bother telling her cos she is usually excellent and really, it was my fault in a way for asking for results over the phone.
I did ring her to say we had the letter and would she like to cancel our appointment and she rang back Friday morning and spoke to Ady while I was out. I haven’t a clue what was said, something about colonoscopies and blood tests for next year, but Ady cant remember so we will see what comes in the post.

I have lots and lots to tell you, so over the next week, I will try and catch things up a bit.
I am hoping I dont get another week like last week, but I did come clean to Ady after we got the letter and he said he would have been suspicious if we had stopped off to book a plot at the crematorium on the way to the hospital...good job it isn’t en route the eh !!