Ady's Test.

Tonight, I am babysitting for my niece’s two boys. They are very cute indeed! They are about one and three I think.

The one year old has gone to bed and has been asleep since. The three year old has been a bit restless and tearful cos mummy and granny have gone out dancing (sorry Andy, he didn’t mention granddad) and he wanted to put a skirt on and go with them.

My niece told me that he mustn’t come out of his room and that if he wakes, then I must do a firm ‘goodnight’ and shut the door.

Well, we only had a little drink and a cuddle together downstairs until his favourite rabbit was tired. We did that a few times and I think he is asleep now...Oh dear, I hope that hasn’t fecked up his sleeping pattern....never mind, eh ;)

Anyway, I am having a lovely evening, in peace and quiet to get on with my blog. So much happens so quickly, that before I know it, I am all behind!!

I am going to go back a couple of months and work forward. If I repeat myself, then just pretend I have dementia or something cos I can’t remember what I have written half the time anyway!

Right, lets crack on to around the time that Ady was wanting to get back to work, but his arthritis was stopping him.

When he had the bone scan and it came back that he had bone degeneration and no cancer, now this is quite difficult to explain, but he thought, ‘Is that all it is?, just a bit of arthritis?..why am I in so much pain then?’

He sort of felt that it would have been easier if he had cancer in his bones, not that he wished it upon himself you understand,but because other people would understand the pain and fatigue he was feeling, but arthritis? People have said to him before now “Oh everyone gets arthritis”

For years and years, Ady has just got on with his arthritis, he has never let it get the better of him, but this time, it is literally flooring him!

Ady would have this battle going on in his head that he doesn’t have cancer now and all it is, is arthritis. The fatigue must be because he is used to not working and so therefore he must be being a lazy bugger, sleeping the day away. One day, he asked me to phone our GP to ask if his thyroid tablet dosage was correct, because he felt as if someone had pulled a plug on all his energy and it had all drained away, and walking was like wading through thick treacle.

When the GP said his thyroid medication was correct, he decided that it must be because he is being a layabout and a benefit scrounger, which reminds me that I must remember to tell you about the haircut and make over my sister and niece organised to stop me from looking like a benefit scrounging chav hag, which I have to say, with hindsight, I was starting to look like one!

Anyway, Ady decided that as his thyroid was OK and he was in remission with both cancers, then all he has is his usual arthritis which he has had for years, then if he takes his co-codamol and ibuprofen with a swig of morphine, he can crack on and get back to work and the fatigue will wear off once he gets going *sigh* He really believed that his fatigue was just laziness.

He was getting up in the morning, taking his tablets and having breakfast and then going back to sleep for a couple of hours. He would then get up and potter around, sometimes he would take morphine first thing in the morning and sometimes when he had woken from his morning sleep. He would find he had just nodded off in the afternoon, usually during Dickensons Real Deal, well, frankly, that shit is enough to make anyone nod off, and the next minute it would be tea time. Then he would also sleep pretty much most of the night, apart from getting up on average three times for a wee.

I told him that there is no way that that amount of sleeping is from laziness. If I was sitting around not doing very much, there is no way that I could physically sleep that much..ever. There must be a medical reason for his fatigue. Ady, on the other hand is quite convinced that he is just being lazy and that he should get back to work.

He also said that he doesn’t really feel that enthusiastic about work. The very thought of work makes him feel knackered. I tried to explain that if he was feeling well, then he would be chomping at the bit to get to work...it is in his blood, but at the moment, he is clearly not well, not to mention the pain he is in!

This whole dilemma went on for quite a few weeks, well, since August actually and he just couldn’t understand why all of a sudden, his arthritis has flared so much...it has never flared this much before. He has had times when, say his finger has been in excruciating pain for a few weeks and it has gone hot and swollen, then suddenly, it has gone ‘pop’ in the joint and the pain goes for a while, but this pain is different...much more painful.

I told Ady that there is no way on this planet that he can work full time at the moment and provide for us...not in a million years. Ady insisted that he could.

So, to prove my point that it was not laziness causing his fatigue and he wasn’t being a scrounging bum, I told him that starting for the Monday, he was to get up, take the girls to school at 7.45, come home, stay awake and I would give him a list of jobs to do around the house. He could have a tea break, just like he would at work, and he could have a lunch break, where he could have a light nap if he wanted to. He could finish ‘work’ at 4.45.

Ady decided that it was a silly idea, but agreed to it. He thought it was quite an easy test and he could prove to me that he was fit for work. I knew full well that he wouldn’t last to the end of the week and wondered what excuses he was going to make for it not working.

Monday arrived, and he set his alarm. He was actually going out with his friend for the day that day, so I didn’t prepare any jobs for him. He wasn’t going to have many jobs anyway, just getting bits of shopping from the village and emptying the dishwasher, that type of thing really...maybe clean the windows...nothing strenuous.

He took the girls to school that morning. They were pleased they didn’t have to catch the bus and Ady told them ‘Your mother thinks I should take you to school in the mornings and do jobs around the house...she thinks I cant cope.....I should be getting back to work instead of mucking around with this’

The girls looked at me and rolled their eyes!

Ady came home from dropping them off. He muttered something about having a sleep to which I gave him one of my told you so looks so he stayed awake.

By 10 o’clock, he looked absolutely shocking. His friend turned up to take him out. He looked at Ady and said “Bloody hell, are you feeling OK? You don’t look very well..we dont have to go out if you dont want to”

Ady replied “No, I am fine...the wife thinks I am being a lazy bugger with all this sleeping...she thinks I should stay awake so I can get back to work”

I chuckled to myself at the way he was turning it all around to blame me for when it all went wrong. I have to say, I didn’t think I would be proving it three hours into the first day!

The boys went out for the day and as soon as Ady got home, he was reaching for the morphine bottle.

Tuesday came and he took the girls to school again. He did admit to me that on the way home he felt ‘ever so funny and peculiar’ and had to pull over for a bit. He decided that perhaps it was because he was taking his tablets earlier in the morning or something. “Rightyho” I said

He did sleep on the Tuesday, quite a bit actually and as he felt peculiar that morning, I let him. I thought I had proved my point and now perhaps he will realise that he is unwell and not lazy. Well, no, Ady moved the goal posts slightly and said that we had agreed that he was just taking the girls to school and he was allowed to sleep a little bit and he would take them on Wednesday.

Wednesday came and he admitted defeat. The poor bloke was on his knees in absolute agony and severe fatigue and feeling pretty fed up about it all. He hates it cos I always win!

At least now, when he feels guilty that he is not working, and he listens to all the benefit bashers and hears all the stuff in the media and from the government about people scrounging from the welfare system, he can be rest assured that he isn’t one of them. And when he is having a not so painful day and he starts on about ‘getting on and getting back to work’, I can remind him of the week he just had to take to kids to school, how does he think he is going to work full time.

I do completely understand his frustration, but for goodness sake, has he forgotten what he has been through that last few years?

Ady.

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!!

 http://www.giftdaze.co.uk/index.php

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 11^th, 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 3^rd. 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!

Perennial.

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 !! 

Move Over Cancer

I sit here for about ten minutes with my cup of coffee and fag, wondering how to start and what to say, and then I have a whole conundrum about the title, so you may be reading this thinking, ’well it must only take her about five minutes to write’, but I can tell you, it takes flipping hours!

Right, I will pick up from last Friday. We came back from the doctors, with the morphine….hang on, I’ve just got to sort out Ady’s bandages situation…..There, I think we have gone for the tubi grip,  then crepe bandage, then a sock….I will tell you about all that in a minute..

So, where were we, oh yes, well we got back from the doctors with the morphine and Ady seemed quite happy that he had a back up for his pain. He decided that he felt a bit funny in the head “Ya don’t say” I said, and off he went for a sleep for an hour and a half.

Over the weekend, Ady was quite cheerful actually, which was a pleasant surprise. He cut the hedge outside the house and even painted the ceiling in the landing. Ceiling painting and cutting in has always been Adys jobs and I do the splashy on the walls bit. Poor Ady, he always gets the crap jobs !

I would check in with him regularly about what number his pain is from 1 to 10, with 10 being the most painful. In fact, we have got to the point where I just say “What’s your number?” and he will say “Erm, about 2 or 3”. We have agreed that when it gets to 5 and he is mid Co Codamol, the he hits the morphine bottle.
We had a good few days and I know Ady is not really too keen on taking the morphine. He has been told for years and years that he has to deal with the pains he gets, and Ibuprofen and paracetamol is all there is. Stronger painkillers are for people with lots of pain *sigh*.
Ady now feels that to take stronger pain relief is somehow giving in. I do totally get where he is coming from. He has a high pain threshold and is a fighter. His old GP never really listened to him, so Ady always felt he was making an unnecessary fuss and so stopped mentioning it. He has just got on with aches and pains all day.
I remember a time last year when he told me he has a little bit of pain in his shoulder that wouldn’t go away. He only mentioned it in passing, but as we were seeing the rhumy guy, I said to tell him about it. The rhumy guy asked what number was his pain. The way Ady was telling me earlier about the pain, I was expecting him to say something like”Oh, its only a little niggle, maybe a 2 or something”, but he said it was a 7 !!!!A bloody seven?? Christ, I would be kicking up a right old song and dance if I was in that much pain, but bless Ady, he just thinks he has to deal with it. The rhumy guy soon got his needles out and gave him a steriod injection and that sorted that out for a few weeks.

It’s only over the last couple of months where he has suffered intolerable pain on occasions that this has all come out in the open.
Even now, he cheats when telling me his pain number sometimes. I can tell by the way he is moving and walking how much it is hurting him. He will tell me a couple of numbers lower than it really is. It must be something to do with some sort of issue that men get about appearing weak. *rolls eyes*

Ady’s friend Derek came to see him last Monday and they went off into town and had a good wander around and generally a nice day. Later that evening, Ady did mention that his legs were aching quite a bit but he had forgotten a dose of co codamol.
He had also bought himself some tubi grip to try and support his ankles and feet as they feel like they are falling apart and need supporting. I totally understood that feeling, what with my shattered ankle an all, which by the way, a year on and  I am still waiting for the hospital to ring to tell me they have made a grave and serious mistake with the xrays, and my ankle is actually shattered into tiny bits…bloody NHS! I must also remember to tell you about my tennis elbow and spot sometime. It’s not just ALL about Ady ya know lol.

Tuesday came and went without a hitch, Ady’s legs and ankles were aching but not too bad so he said…hmmm….
On Wednesday, the primary school where we volunteer has football and netball back on. This has really kept Ady going through the dark times…he lives for it and luckily, the kids think the world of him. They had their first inter schools match of the season.
Ady stood there bellowing at the kids about what to do and where to go, completely immersed in the whole thing. Anyway, by the end of it, he was very hoarse!
Ady’s football team won 2-1 and my netball team won 7-2 if you are interested.

Dr K rang that morning to ask about Ady and how the morphine was going and to say that a blood test came back and he was borderline low on vitamin D so he needs to take that too. I told him that the pain was good and we haven’t touched the morphine. Everything was good.

That evening, he said that his ankles were hurting and so was his lower right back. He told me that pain was about a four and I thought ;right, that will be about a six then’ and the way he was moving about, it was certainly more than a four. So about 7 in the evening, I gave him a spoonful of morphine. At about half eight, I asked him how he was doing and he said that the morphine had done nothing, so I gave him two more decent 5ml spoonfuls.
I went off to bed a bit later on and at 1 o’clock in the morning, he woke me up telling me that that bloody morphine has made everything much much worse. I am back to where I was last week, this pain is a good ten again. I got the impression that he was blaming me for his pains, but I decided that I would wait until he is feeling a bit more cheerful before I nip that sort of behaviour in the bud.
His ankles were absolute agony that he could hardly get up the stairs and his back was the same.
I did offer him some more morphine but he was adamant that it was the morphine causing this. So, up I got and had a good old rummage through google and found absolutely nothing about morphine doing that. I also had a good look at stuff about Psoriatic Arthritis. That didn’t make very nice reading I have to say. This type of arthritis is nasty!
Have a google !!!

At about three, I went back to bed, a bit worried about why Ady was suddenly in so much pain and thinking about what I had read about his type of arthritis and it affecting feet and tendons and stuff…bloody hell, it can even affect his eyes, but no wonder he feels his feet need support.
Ady got up half an hour later and shuffled to the loo. He said that pain was easing, but to be honest, it can’t have eased that much by the way he was shuffling.
In the morning, I left a message for Dr K, to say the morphine is crap.
 He rang back about an hour later and after a whole long conversation, we went later yesterday afternoon for a steriod injection.
We all had a good chat about Ady’s arthritis meds and how they are supposed to stop disease progression, which in turn, stops pain and inflammation.
Ady has been saying for a while that when he was off the Methothrexate for 4 weeks during radiotherapy, he felt very comfortable and had no pain and that he is sure it is the methotrexate that is the problem. Looks like the morphine has been let off the hook then.

So, at the moment, the deal is that Ady is going to stop the methotrexate altogether and see how he gets on. The steroid injection is on standby and we just need to ring if he feels he needs it and he can have it on the same day, and he must not wait until he is crawling in agony before taking the morphine or it wont be effective. He needs to keep up with the co codamol  and ibuprofen whether he has pain or not and not to be scared of taking the morphine.
Ady said he was concerned that when he comes to the end of his life, he will have used all the morphine up and it wont be effective then, but Dr K reassured him that there is plenty left in reserve for ten years time and we need to deal with the here and now.

Dr K is very surprised, shocked, even, that the co codamol hasn’t made him constipated or nauseas, but of course, Ady’s tubes have no holding room cos it’s been chopped away with the bowel cancer, so it’s just a straight shoot down now. My sister was surprised too cos she just has to take two tablets and she cant shit for a week. Ady, however, shat four times yesterday!

Ady feels as stiff as a board this morning, and says it is taking him an age to get up and dressed. I have offered to help but no, he is going to battle through.
He has felt that the tubi grip isn’t giving him the support he needs, so we got some crete bandages yesterday. He put those on this morning and found he couldn’t get his shoes on, so then he is wondering if he should put his sock on and then bandage over the top of that and which should he use, crete or tubi. We decided in the end, that he would have one layer of tubi grip and a small amount of crete bandage to tighten things up a bit and then his sock. So far, that seems to be doing the job and long may it continue !

There are other little bits and pieces I want to tell you, but it will have to wait now cos tescos are knocking at the door.