Feet and Fatigue Part Two

So, we got into the ultrasound room, and Ady lay on the bed. I was allowed to watch the telly with MrB and our nurse (she is really lovely).

He put the gel stuff on his ankle and put the thingy thing on it.

The nurse and MrB started saying “Oh my goodness, look at that!!..no wonder you are in pain”

All I could see on the telly was a load of red and orange colours as he was moving the thingy thing on his ankle...it meant nothing to me.

MrB and the nurse explained that all the red and orange was fire, burning and inflammation in his ankle and foot, and there was a lot of it!

They also showed me where the synovial fluid was. I cant remember if it was in the right place or if it had leaked. I was too amazed at the whole thing to take it all in tbh!

Anyway, I forgot that poor Ady was lying on the bed and this was his foot we were looking at!

The next minute, MrB got his needle out again to have another go at getting it in the joint.

Blimey, this needle was a few inches long!

So, there was Ady lying on the bed, and MrB had this bloody great needle in his ankle, trying to get the ultrasound to guide it into a space in his joint.

The nurse was telling Ady to take some deep breaths and that it wont be long and I was there thinking “Blimey, dont look at Ady cos I will cry, dont look at the needle cos I will faint...just look at the telly”

MrB was twirling the needle at lots of different angles trying to get it in and then suddenly he said “Great,,,got it!”

I thought “Feck me, thank God for that!”..I think Ady thought the same but for different reasons!

I was surprised at how much blood there was actually but anyway.

Mr B said that in an hour or two, Ady will probably be swearing a bit with the pain while it flares a bit more, but then it should all calm down. He didn’t know how long for but he hoped for a while at least.

He has also asked our nurse to set up an appointment with the podiatrist to sort out something brace like I think, or certainly something to lift his arches anyway, for his feet, to help out with the mechanical knackerdness problems.

She is also going to see us in the New Year to train me on how to inject him with the Methotrexate weekly.

There is another set of drugs which are even stronger called Biologics, I think. Unfortunately, Ady can’t have them for five years cos there is a concern that they could ignite dormant cancer cells.

I dont hold out much hope for the Methotrexate but I really do hope I am proved wrong!

He has started back on the weekly tablets at the moment so let’s see how we get on.

At the moment, Ady’s shoulders are really playing up, along with the top of his neck. His right wrist comes and goes, in fact the night before Christmas eve he woke me to ask for some morphine because it was hurting so much. His left foot is fairly comfortable with the odd pain here and there, and his right foot is starting to feel like his left foot did. Some of his fingers are looking like sausages.

Each morning, I bandage his feet with tubigrip and ankle supports just to make things easier for him.

Since seeing MrB, I think Ady has accepted that all his fatigue and pain is because of his arthritis, and his flare is because of stress.

He has stopped fretting about getting back to work now. Especially when he asked MrB if he should crack on and get back to work, Mr B said that he needs to win the lottery and go and live somewhere warm and do gentle exercise.

Poor Ady has really struggled in his mind about whether he is being lazy. His biggest problem has been when he has told people that he is in remission from cancer but is in pain from arthritis now, some people replies are “Oh, only arthritis? Everyone gets arthritis”..such brush off comments have mentally tortured him.

Ady says that the pain from the arthritis is far worse than any pain he had from his cancer operations.

Arthritic pain stays with you 24 hours a day, varying in severity. It is all over his body. His joints are hot, swollen and inflamed. His psoriasis has flared and is sore and his body is as stiff as a board.

And the worst thing of it all is that he is talking about swapping cars so he can drive my automatic cos it hurts his left foot with the clutch....Jesus, whatever next. I dont want his crappy Y reg heap of shit...*shudders*

Feet and fatigue Part 1

So, if you have been keeping up with this blog, you will remember that Ady came off the methotrexate as he felt it was doing bugger all.

His rheumatologist offered him a couple of other drugs in its place. One called something or other with lots of ‘X’, ‘U’s and ‘R’s in the name. One of the side effects written down was that it could cause certain types of cancer...well who the bloody hell in their right mind would want to take that...I ask you !! and the other one was called leflunomide which didn’t seem to cause certain types of cancer. All of these drugs have pretty heavy duty chemicals in them, so even if they don’t cause cancer, they probably bugger the rest of your system up instead, which is why you have to be monitored so closely with constant blood tests and such like.....anyway, Ady started on the Leflunomide and bugger me...up to the moon he went...he was as high as a kite, completely washed out, slept all day and just couldn’t focus on anything.

He said it felt horrible so I rang the rheumy nurse and she suggested taking the tablets every other day to see if it made a difference and once he got used to that, he could go every day, but don’t give up just yet, and anyway, she said it could be the morphine. Ady insisted it wasn’t the morphine, he knew how that made him feel and this was a different feeling altogether.

So we went down to one every other day and you could tell the day he had his tablet as he was completely washed out and fuzzy and on the tablet free day, he was fine. We spoke to the rheumy nurse again and she said to stop the tablets for a week and then try again to make sure it was the tablets causing the problem.

In the mean time, we saw our now long suffering GP, who by the way is still the best one anyone could ever have and is fantastical! And when we told him what was happening and that Ady was going to try the tablets again in a week. He thought that Ady shouldn’t put his body through more turmoil when it clearly is the tablets not agreeing with him.

He agreed to get the rheumy appointment brought forward so we can see if we can get Ady’s arthritis under control. He could see that depression was kicking in and Ady agreed to not try the tablets again.

Poor Ady, he desperately wanted to be getting back to work. He hates being unable to provide and says “but it’s only arthritis, it must be something more, it’s never been this painful”

I went off and had a good old google. Christ, have you ever looked on an arthritis forum? Poor, poor people is all I can say. They suffer the same way Ady does, some more so and some less so, but they all talk of the same pain and the same problems....the same medications and the same side effects.

I read some out to Ady that were relevant to him, and I think he was coming around to the idea that it can be ‘just’ arthritis causing all his woes.

We went off and saw our rheumy chap, really hopeful that something can be done about the pain especially.

Well, what a disappointment that was!

The day we really needed him to really listen to Ady and to understand and look at his joints, empathise and take some time with him and he did none of it. The whole visit, we felt, was a waste of time. Ady actually felt a bit of a fraud and his feelings that perhaps he should get back to work came flooding back.

I had worked really hard, trying to get Ady to see that everything he was going through was caused by an arthritic flare. It even said on Google that stress is one of the big causes of arthritis flares  and Ady has been pretty stressed over that last couple of years!

Our Rheumy guy suggested that Ady should go back on the methotrexate, saying that his symptoms had got worse since he came off them. We told him that no, he came off the methotrexate because his symptoms had gotten worse while he was on it, suggesting that it was no longer working. So Mr rheumy said that instead of tablets, he should inject it instead, it will be stronger and have more of an effect.

We were to make an appointment with our lovely nurse for training on how to give the injection. Ady was not happy at all.

Our lovely nurse who has known us for at least ten years could see that we were a bit pissed off. We told her what had happened and she suggested that we could do with a second opinion and she knew just the chappy who enjoyed a challenge!

We were to wait for her to ring us with an appointment.

True to her word, she did ring us the next day with an appointment for Friday at 10.30 with DrB.

Oh, my, God, what a nice man he was!!

It turned out that our lovely nurse had quietly pulled a few strings to get us this appointment, and had spoken to MrB about us and he agreed to tag us on the end of his surgery. He spent over an hour with us. Bloody hell !!

He went through everything from top to toe.

He explained that Ady has a bulging disc which is pinching his nerve causing sciatica down his left side. He had a pain that started in the middle of his chest which went right through to the back and radiated throughout his shoulders and has finished at the top of his spine. That is all to do with degeneration.

He had a good look at his hands and then moved onto his feet. It was fascinating!

Ady stood on the floor and MrB said “Hmm, you have big problems with your feet”

He got Ady to lie on the bed while he examined him. I really wish I had recorded it cos he told us so much!

He explained that there is a nerve running down each side of the foot. Because Ady’s ankle is collapsing inwards, it is pinching the nerve on the inside and because his actual ankle joint has collapsed, that is pinching the nerve on the outside. He prodded and poked various parts and said where there would be pain and what exactly was causing it and all how the foot worked.

He also said that Ady’s Achilles tendon was inflamed due to the type of arthritis he has and his toes were numb because of nerve damage. Basically his feet are buggered, but the left one more so.

He even let me loose with the whacky thing to whack on the knees to check for reflexes and the pokey thing you run on the sole of the foot. He then said that he would give Ady a steroid injection into his ankle joint and wrist joint to ease the inflammation.

Ady did hope that he wasn’t going to let me loose with the fecking great big long needle and start jabbing that in him!

Ady had the wrist injection without a problem, but when it came to the ankle injection, MrB couldn’t get the needle in the joint...at all. Poor Ady was lying there, I have to say, being far better behaved than I would ever be, while the consultant was wriggling the needle around trying to get it in the joint.

In the end, he decided that he needed some ultrasound help, so we all went off to the ultrasound room.

As we were walking down the corridor, the consultant asked our nurse to get leaflets and information on fatigue caused by arthritis, some info on psoriatic arthritis and another one on feet and podiatry.

He told Ady that after what he has been through the last couple of years, he is not surprised at all that he arthritis is causing problems and that he will most certainly have fatigue, bad enough to make him feel that his thyroid has packed up.

Ady told me later that he was so relieved to find someone that completely understood, he felt like doing cartwheels up the corridor!

Blimey, this is going on a bit so I will do a part two....hang on.....

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.

Lucky Bugger!

Wow, what a blooming week!!
 On Monday, we went off for Ady’s bone scan. This isn’t a quick trip to the hospital at all. We had to get there at 10am for the nuclear injection and then go away for three hours and come back at 1pm for the scan which would take about half an hour.
This give all the nuclear waste time to travel around his body and  settle on all the dodgy bits of bone and then when you go though the scanning machine, all the dodgy bits light up or turn into ‘hot spots’.
We were wondering if Ady was going to light up like a Christmas tree.

While I was waiting for Ady in the scanner, and elderly couple…well in about their 70s I spose, came and sat to wait for the husbands scan. They told me that he had prostate cancer about 5 years ago and had it removed. Everything had been fine and they got on with their lives and pretty much forgot about it…then they had a call from the GP to say his PSA was on the rise and he needed a bone scan. Bloody hell, his starting PSA was only 7 with a gleason score of 6.
I thought to myself ‘ Feck me, we’re doomed’

So, the scan was done and off we went home. We were told it would take 7 to 10 days for the results.
 So there we were, on that bloody waiting game again. I hate that game because the rules are, that you have to plan the funeral and wonder what sandwiches everyone will like, then you have to plan about what to do if the scan is clear, then you have to go back to planning funerals and what music to play, and then you have to go back to wondering what the problem is if it is clear, and then back to how to tell the children, cos he must surely have mets, and then back to thinking that it is clear cos there is no psa rise.
You have to do this ALL week, in between getting on with thinking about what to cook for dinner, what to wear tomorrow and all other normal things that normal people think about.
Thank God I’m a mentalist.

I got Ady to take his co codamol and ibuprofen religiously to try and keep the pain at bay. He was a good boy and did as he was told, pretty much.
When people asked how he was, his answer was “Oh, well, I’m still alive” FFS.
Last Thursday, I took the girls to school and popped in on my man I look after. I got home to find Ady in the kitchen leaning on the side with his hands.
I said “Are you OK?”
He said “No I am not, my feet are killing me, I have never ever felt pain like this, ever”
I have to admit, he didn’t look too good either.
“Have you taken you tablets?” I asked
“Yes , Christ this is agony” and off he went to lay down on the settee.
I thought to myself, ‘Hmm, what should I do…I know, when in a moment of panic, stop and assess the situation calmly, so I did for a minute, and then decided, nah, feck it, lets ring the doctors.
I rang the doctors and spoke to the lovely receptionist and asked for a telephone appointment. Of course he didn’t have any left, so she offered to take a message and our GP would  ring me anyway.
I asked her to write in his book that Emma and Ady say his tablets are crap.

Later that day, Dr K phoned and I had a good chat with him. Ady was asleep, as usual, but earlier, I had questioned him heavily about his pain and on a scale of one to ten, how bad was it and all that.

I told Dr K that in the morning, his pain was a good 10, and it has only gone down to a five or six mid tablet session, and his pain only ever goes down to a five or six but he just deals with it.
I asked Ady what I would be like on his 5 or 6 pain number, and he said that I would want to be in hospital on a drip, so I think he must have been in the most hugest amount of pain ever if that’s the case !!
Anyway, back to Dr K. I asked if he can have spread without a psa rise, and he said it is possible and also, with Ady’s history of multiple cancers, he didn’t really trust the blood tests.
He was chasing up the hospital for the scan results and had asked for them to fax it urgently. He would ring me in the morning and wanted to see us in the afternoon. He booked us an appointment there and then.
He said that Ady should not be in this amount of pain at all, and we need to get some sort of pain management thing going.

So, this morning, I popped out to look after my elderly man, and when I got back, Ady said to me, “You have better hold off the sandwiches cos Dr K has just rung and the bone scan is clear”
“Clear?” I said “Well what else did he say?”
“Oh I cant remember, he said something about there being nothing untoward on the scan except a few bits, but that main thing is that it is clear”
 “What do you mean you can’t remember? You must have only just got off the phone to him…have you got dementia too…?”
“Well” he said “ I knew he would ring while you were out, he should be speaking to you and then we would know what is going on!”

‘I wonder what the ‘few bits’ mean, I thought to myself.
We sent general texts to people to let them know the scan was clear and everyone was very pleased, however,  of my friends replied that if the pain was in Ady’s arse, he had a good idea as to what was causing it, and another friend replied with “That’s great news, do they know what is causing the pain|? Do you think it might be you Emma?
I would have told them both to feck orf, but then I would have no friends left.

This afternoon, we went to the doctors and spent a good half an hour with him.
He said that on the scan, it showed degenerative bone disease in his right knee, both feet and right lower back. They didn’t look at the top bit I don’t think, cos they were in a hurry to get the results back.
He offered Ady a steroid injection which he really doesn’t want cos it lulls him into a false sense of security for six weeks and then all the pain comes back with a vengeance and he has to suffer until he can have another one. He didn’t want to add anymore arthritis medication cos he feels the methothexate and sulphasalazine is toxic enough, so at the moment, we have gone for staying on the co codamol  and ibuprofen and to take them regularly to keep the pain at bay and then when he gets what they call breakthrough pain, then he can have a swig of morphine from the bottle, because his pain is very up and down and not constant.

So there we have it, the bone scan is clear but he has lots of arthritis causing him lots of pain, so we have cancelled the hearse and vicar, and cracked open the morphine!!

The beginning of the End?

I’ve been meaning to write in my blog for ages but I just haven’t had the time at all.

There are loads of things I wanted to write about. I was going to do a thing about life after cancer and what we all think and that sort of stuff, and I was going to tell you about Ady’s visit from the police and stuff like that. I will do all that, but there are more pressing things to tell you!

Well, Ady finished his Casodex on 1st August. There was no big celebration or anything, I just stopped putting them in his tablet box and that was sort of that really.
Ady said that he felt a bit all at sea now he wasn’t taking anything or seeing anyone about his cancer but we agreed that we would get used to it and everything would be fine.

Not long after stopping the Casodex, Ady started getting swollen legs, and one of them was quite red. He said they were aching a bit too. So off we went to the doctors and he diagnosed cellulitis and gave some antibiotics. Two weeks later everything was supa doopa, oh, apart from him complaining that he still had sore man boobs. His man boobs took a good 6 weeks to go!

So back in August, we were thinking “Right, we have done the prostate treatment and all is good, so now we have the PSA test at the beginning of September, then we have the blood test at the beginning of October for the colon cancer and a CT scan at the end of October for the colon cancer too, then we see the colorectal nurses in November to get the results and talk about his arse and another PSA test in December just in time for Christmas. All that will be sorted and then come the New Year, we are going to be re assessed with the benefits and Ady can go on the ‘getting back to work benefit’ and we can all live happily ever after. Marvellous!

Well, we sort of thought that his PSA test in September might possibly be a false negative because he still had a lot of side effects of the Casodex in his system. We both agreed that the December test will be the biggie. Septembers test came in at <0.1 or undetectable. Brilliant, things are moving in the right direction at last !

About a week after the cellulitis had cleared, the swelling on Ady’s legs, went down a bit but not completely and they started really aching. Off back to the doctors we went and as we were due to see the rheumatologist (thank you spell check) that afternoon, we all agreed that we would see if he thought it was linked to his arthritis.
Ady just said that they hurt all over, from the top to the bottom. He couldn’t pin point where the pain was but just said that it bloody hurt!
The rheumy chap examined him and said that it was nothing to do with his arthritis.
We talked about whether it could be the Methotrexate or Sulphasalazine and Ady was told that that could be a possibility and if he wanted to, he could come off the drugs, one lot at a time and see if the pain goes.
So, we got home and stopped the Sulfasalazine. Well, within three days, Ady said all his joints ached and the pain was still there, so he went back on three a day instead of his five. We didn’t bother stopping the Methotrexate but we bought some vitamin D, just in case that was the problem.

Over the last couple of weeks, Ady has been REALLY complaining about his sore legs. I suggested to him that he took his Ibuprofen regularly and took paracetamol in between. By the end of last week, he said that the pain was making him feel sick and he had no rest from it. The paracetamol and Ibuprofen weren’t touching it at all.
By the weekend, his feet had gone numb.

He was sitting on the chair banging mainly his left foot on the floor saying “This is really weird, I cant feel my foot at all!” The pains were still in his legs, but mainly the left one.

Ady told me that out of everything he has been through over the last couple of years, this pain will make him depressed and pissed off.

I rang the surgery on Monday morning and we went to see our fantastic GP at 11am.
He spent a good half an hour with me and Ady and examined him thoroughly.
He ruled out sciatica - that should have gone by now, or getting better and two months after it all started, it has got much worse with numbness and pins and needles (I forgot to mention the pins and needles).He checked for disc problems and a whole load of other stuff.
We agreed that it probably isn’t his arthritis meds cos he has been on the for years, so why suddenly cause a problem now?
So then he asked when Ady last had a bone scan. We said last year when he was first diagnosed, so our GP thought he ought to have another one.

D’ya know, we saw our GP on Monday morning, and by Tuesday morning, we had an appointment through for the scan to happen the next Monday!
That’s a bit too quick for my liking !

On the Tuesday, Ady went for a whole barrage or blood tests, one of them was the colon cancer test. We didn’t bother with the PSA, that can happen at Christmas for what it’s worth, because google has since told me that you can have mets to the bone without a rise in PSA FFS!!
Wednesday evening, our GP took the time and trouble to ring us to tell us that his colon cancer test came back perfect and did we have the bone scan appointment yet.
Bloody nice bloke, our GP !
Ady is now knocked out and as high as a kite on co codamol 500 which thankfully has taken the edge off the pain.

So there we have it. Does Ady have metastasises to the bone?
Was the casodex covering up any little cells that were mutating behind its back?
If we did a pSA test to three decimal points, would it be rising, or was that last PSA test very very nearly on 0.1 and but the machine did under 0.1 and the next test will be 0.1.
Does he have a little met just settled by a nerve causing the leg swelling, pain, numbness and pins and needles?
Or is it none of the above and something completely different?

There is one thing I have learnt recently is that as soon as you sit back and think ’phew just a few more tests to do and we are on the home run’ then something bites you in the arse.
Even when you become clear of this bloody disease, you are never free of it.

Not Long To Go !

Well, after having his prostate chopped out, his pelvic innerds fried and his testosterone blasted, Ady finally finishes the Casodex in a couple of weeks on 1^st August.

Thank God for that cos all we hear about these days are his sore man boobs and his excuse for everything he does wrong is “Well it’s my hormones!”

In fact, the other day, I came in from looking after my elderly man in the evening and the girls were upstairs doing their homework or so they say, so I shouted “Hellooooo, anyone hooome”. Silence....so I shouted again.

I’m not sure what homework involves using headphones full of music in your ears, but hey, what do I know!!

Then I heard some sort of grunting sound from the sitting room. The sort of grunting sound only men make when they have been woken up, then a “Hello”

So I said back “Everything OK?”

He replied “Hello....hello.....oh bugger”

I thought to myself, ‘That’s it, Ady has lost the plot, finally...the end is coming’

I went into the sitting room to find that Ady had fallen asleep on the phone mid conversation to his brother. According to Dick (his brother) he was busy chatting away and realised that Ady wasn’t replying, and then heard snoring...he tried shouting at him down the phone but ended up hanging up. ‘Must have been a riveting conversation then’, I chuckled to myself.

Ady blames it on his hormones, and Dick believes him. I’m not getting involved!

Oooh, I must tell you a bit more about my choir I joined. I did tell you a bit about it a few blogs back, so I will try not to bore you too much, but....I was asked to do a flash choir a town or two away. Oh Em Gee, it was SUCH fun!!

We had secret meetings for a few weeks on Tuesdays to practice our songs, which was A Stevie Wonder number ‘I just called to say I love you’ and that Jar of Hearts song by whatshername.

Then, on the Saturday, we went off to Waitrose. There were about 30 of us altogether. The manager was in on it by the way and we dotted ourselves around the shop.

I hung around the fruit and veg with my friends Gill and Maria who are both as mad as hatters.

Our cue was an announcement on the tannoy for a Mr Wonder to come to customer services and then we started with Stevies number, walking through the shops singing to as many men as we could and ended with the Jar of Hearts one by the cafe.

Ady and the girls refused to come and watch cos they said it would be too embarrassing, cheeky buggers.

It is something I will remember for a long time and just brilliant fun!

We are setting up a travelling flash choir, so be careful people, I could be singing in a shop near you !!!

Now, another thing I must tell you about, is my allotment!

Oh my goodness, this is another thing that’s SUCH fun. I am growing SO many things!!

We have been eating lots of new potatoes and salad. My cucumbers are the biggest I have ever seen, and my tomatoes are coming along nicely.

I have managed to grow lots of strawberries and raspberries too. In fact the other day for pudding, we had chewy in the middle meringues that I made with Daisy and Matilda’s eggs, with raspberries and strawberries from the allotment and cream.....from one stop up the road.

As Steph is allergic to apples, pears, plums and cherries, I thought I would grow her some nice peppers. She loves peppers!

I was really chuffed with myself as I watched them grow in their growbags in my greenhouse. Especially as I grew them from seed.

I thought to myself ‘bloody hell, I’m getting really good at this allotment lark!’

In fact, I was so chuffed with all my watering, weeding and growings, especially my peppers, that I made Ady come down to look.

As I was wandering around, generally surveying all my growings, I heard Ady say “What the bloody hell have you got cabbages growing in here for?”

“What are you talking about” I said “ My cabbages are over there, next to my broccoli”

“No” he said “I mean these cabbages here in the greenhouse”

“Oh dont be stupid, they are peppers” I said “I’m growing them for Steph”

“In all my years of gardening, woman, I have never seen a pepper plant look like a cabbage!”

“Well” I said, “It said peppers on the packet, so they are peppers”

“You should have gone to spec savers then” and promptly threw my cabbages out of the greenhouse!! Can you bloody believe it!! Four of them!!

The poor things, that were doing so well, are now outside and Ady went off the next day to buy me some pepper plants.

“These are what peppers look like” He said. I spose the leaves are a bit smaller, and the more the cabbages grow, the more cabbagy they look, but I’m not telling Ady !

I didn’t realise that cucumbers grow quite so many cucumbers on each plant. I thought they only grew one or two per plant, so I bought five plants. Christ, I am awash with cucumbers!!

And what with my six tomato plants, it’s a bit of a squeeze in my greenhouse. Then I decided to buy a melon plant for £2.99 in Lidl. Bloody hell, I didn’t realise that that grows all over the place with hooky twine things and everything. Blimey, if each flower make a melon, we will all end up with the chronic shits after a week !

Never mind, my peas are in the freezer all ready for Christmas J

Ebay, Casodex and The Post Office

The other week, I met up with some forum/facebook  friends for lunch. We all drove an hour and a half and met in the middle, which made it Cambridge I think...anyway, they all complained to me that I haven’t been updating my blog and how rude am I.

They complained that they have had to wade through the misery with me and they have sat on the edge of their seats waiting for each update and now everything has come to a comer/stop, I haven’t bothered updating.

I did feel momentarily bad about that and didn’t realise people were still wanting to know what is going on, even if it isn’t about hospital appointments and stuff.

I clicked on my blog, and realised that loads of people are still clicking on it to have a read, which I have to say, I am quite surprised about really, cos I think I am quite boring, wittering on about me myself and I and a little bit about Ady and the girls!

So, if you are interested, then keep reading and if you aren’t, then what the bloody hell are you doing reading this anyway!

Now then, let me rewind my brain back to the last time I updated.......OK, I must sort some pictures of Daisy and Matilda. They are very good girls and lay us an egg each every day!

As you probably know, Ady likes his model trains and he has got a whole thing going on in the loft. Every September, he goes off with his train chums to Milton Keynes, I think it is, on a big exhibition thing where they can buy the latest in choo choos.

Ady usually takes a load of money he gets for his birthday with him to have a spend up, and the last two years, he has said that it would probably be the last time he would be able to go cos he keeps getting diagnosed with cancer around that time.

Anyway, this year, so far, touch wood, he is cancerless and he is looking forward to going. We agreed that we dont have the money this year, so he agreed that he would sell some of his old stock and get the money that way.

He gathered up what he wanted to sell and rang a man in a train shop who offered to give him £130 for his trains. Ady was happy with that and sent them off.

A week or so later, Ady’s cousin rang and said that he could see Ady’s trains for sale on Ebay, going for two or three times the price he got for them.

Ady had a whole load more that he wanted to sell and I said that I would try and suss how you go about selling them on Ebay ourselves.

Blimey, it’s a whole new world out there!!

I am having great fun, taking photos of his trains and putting it all on Ebay and watching people bid on them and then wrapping them into Christmas presents to send off. Ady is very happy cos he is making so much more money...he is practically clearing the loft out!

And his cousin and his friend are now getting me to sell their stuff for them too.

I have been sending things first class recorded, like you do and I had been merrily going to the post office myself and doing it, but then I decided that Ady could do the post office trips.

The post was costing £3.65 to send, so I was charging £4.00 to include the envelope and bubble wrap.

So off Ady went (still on his casodex and a muddled mind like a sieve) to the post office with his parcels.

“Blimey” He said “That was expensive to post, it cost £6.85”

“What do you mean £6.85, it should have been £3.65.....did you sent it special delivery?”

“No” he said “I sent it registered, like you told me to”

“No” I said back “I said to send it RECORDED...no wonder it has cost so much!”

So the next week, I sent him again and told him to make sure he sends is recorded and not registered.

He also had to get some bread and milk this time.....He rang me from the village and checked that it was to be sent recorded and not registered, and I agreed.

He came back home with the bread and milk and said “Thats still bloody expensive you know Em, it was still £6.85”

I said “Well what did you ask for?”..He said “Registered, like you said”

I shan’t repeat what I said back to him on here, needless to say that he has been sacked from his post office duties.

Tablets and Blood Tests.

I had written a list somewhere, of all the things that have happened lately and what needs blogging about, but would you believe, I’ve gone and lost the blooming thing. So now I am going to have a sit and think about what I wrote on that list.....hang on......In fact, I know why I have lost it, it’s because Charlotte wanted  some CDs and I told her that she couldn’t until she learned about being tidy...for at least a week.

I went out and came back to find she had tidied my bloody desk !!! Now I have lost everything including my list!

Now I want to tell you about the rheumatologist and white blood cells, and about Ady’s hair and my choir..hmm, I had written other things down, but I can’t remember them for the moment. I’m sure that once I get going, they will come to me.

I will start with rheumatology.

We went to see Ady’s nice consultant to talk about starting back on the Methotrexate. I think I have told you this before, but never mind, a recap is never a bad thing  eh !

Anyway, he said to start back on the Methotrexate, doing 10mg for a couple of weeks and build up to his usual 22.5mg. He wanted bloods taken every 2 weeks for 6 weeks and then monthly after that.

He took a blood test while we were there and his white cells came back at something like 3.5, which by all accounts, is getting quite low.

The rheumy nurse and I agreed that it is probably to do with the radiotherapy and it should sort itself out. Well a couple of weeks later, he had another test done and his white cells were still dropping...they were about 3.2, so the rheumy nurse spoke to the consultant and he said to stop all of his arthritis drugs and see what happens to the white cells and then he will make a plan.

So, Ady has come off his Sulphasalazine and methotrexate and his white cells have come up to 4.8, which I assume is a good thing, even though he now has a stinking cold. He is not sure if his bones ache cos he has man flu or if it is because he is off the drugs.

I must ring the rheumy nurse on Monday and speak to her.

Last year, I was asked by my friend Gill, if I wanted to join a choir, but to be honest, that was the last thing I had on my mind at the time, but now things have settled down a bit, I thought I would go along and see what it was all about. Well blimey, what fun it is, I love it!

I go along once a week for a couple of hours, forget the world and its woes and have a good old sing song. And before you start sniggering, our choir leader says I have a lovely voice..so there!

It also happens, which is VERY handy, that our choir leader was a GP and she says I can ask her any questions I like and she will be very happy to answer them. She is also a right old laugh.

We had a good chat about white cells and she said not to worry until they get to about 1, so I am not worrying and Ady is just going with the flow.

As I think you know, Ady is taking Casodex 150mg for six months to try and stop any possible lurking cancer cells feeding off his testosterone and multiplying. Well, there was me thinking yay, he will be multitasking and asking for directions before the week is out, when all that has happened is that he has started growing some bum fluff on the top of his head. He is absolutely delighted! I think he looks a pratt, but he doesn’t care.He says he wants to enjoy his hair while he has it.

In fact, it has made all of his hair go a bit bum fluffy and fly away and now he has started complaining about bad hair days....for goodness sake!

The other thing the casodex has done, is zapped all of his energy. He is knackered all day. (Ady says, just like a woman.....knackered all day and can’t do feck all). So then he has this whole guilt thing going on in his brain all day about whether he is just being lazy and should fight it and try and go to work, or whether he should go with the flow and sleep it off when he is tired.

He doesn’t just doze when he sleeps, he is completely out for the count and I have to give him a jolly good shaking to wake him up.

He drives me around the twist sometimes, with his guilt trips. There he is, trying to complete his treatment for cancer, the second cancer, off all his arthritis medication cos his white cells are up the shoot, so that needs sorting, plus all the other things that are wrong with him and the silly sod thinks he should be going out for the day digging over someone’s bloody rose bed!!

Thank the Lord that we went to see his oncologist the other day who told him not to fight the tiredness and to sleep his way through it. Work can wait.

Well because someone in authority has ‘given him permission’ to sleep, he is quite happy with that arrangement and so hopefully the guilt conversations will stop!

The Oncologist also said that she is very pleased that his PSA has remained at zero and because of that, she is discharging him from her care, back into the care of Mr D our urologist.

She said that she hopes, in the nicest possible way that she doesn’t see him again. I didn’t like to ask what she thought the chances of that happening were and from what I have learnt about prostate cancer, is that it has no rules and it takes no set path of destruction.

Prostate cancer has a complete mind of its own and is totally unpredictable.

I really really hope, in the nicest possible way of course, that we don’t see her again, but I have a nagging gut feeling from his ‘high risk’ stats, that we just might do.

For the moment, we are going to get used to the ‘new normal’ we have found. The one where all the cancers have been packed away in a box, get the casodex finished in August and then tightly cross our fingers that the PSA doesn’t rise next year, or the year after, or even the year after that...we will get used to it...you have to!

Someone said to me the other day “It’s not the lion you are watching that will get you, it’s the snake creeping up your leg that you didn’t see”

Blimey, that made me think a bit!