Friday, 30 September 2011

Birthday Wishes.

Blimey, where do I start......OK I will start at the beginning of the day, which was Ady’s birthday.

The girls made him get up before they went to school, so they could wish him a happy birthday and give him his presents (we bought a few bits from Herm Island when we were on holiday).so he came downstairs still attached to his night time piss bag...nice...and sat at the dining room table to open them along with his cards.
The girls made him breakfast, and we left him there while I took them to school.
I came back home to find he had gone back to bed and was fast asleep, so I thought I would check our account to see the state of the finances and if we could afford to get some coal in ready for all this snow that is supposedly due. We had enough for about half of what I usually order, so thought to myself, something is better than nothing. I phoned and ordered the coal to go with my logs from Sue.
A couple of days before, my friend Mary sent me a text to ask me if I would be in on Thursday evening. I said that I would be as we had nothing planned and Ady isn’t wanting to go anywhere at that time of day atm because he catheter leaks a bit then and can be a bit painful. “Good” she said, “Make sure you are in between 6 and 8, you have a surprise coming”
‘Oh bloody hell’, I thought, ‘what has she done’

Ady had his appointment at the hospital for his cystogram thing. It’s where they put dye in to see if he has healed and can have the catheter out, or if he has to have it in a while longer cos he has sprung a leak.
This was at 12.30, so I woke him in time to go. He is still feeling really knackered and has to plan his sleeps around his activities and appointments. I think that standing at the side of the pitch shouting at the kids the other day has caught up with him, silly sod.
We went to the brand new Tunbridge Wells hospital which once you have found your way to the car park which is quite poorly sign posted, and navigated your way around the concrete pillars holding it up (the concrete pillars are exactly the same colour as the floor), the hospital itself reminds you of an airport and shopping centre. Not like the Kent and Snuffit, sorry, Kent and Sussex, where Ady said it reminded him of an abattoir.
This is the new, top of the range hospital, where you zap you letter on a machine and it tells you where to go. So off we went to the orange zone, past Costa Coffee and WH Smiths and sat and waited. Well, blow me down; they called him on time....yes, on time!
I was told to stay in the waiting room (bloody cheek, do they not know I need to take notes for my blog?) and Ady went off with a couple of nurses.
He told me that they took the bag off bunged up the pipe. They then used the other pipe bit to fill his bladder with water. They said they would keep filling until it became uncomfortable and he said stop. He told them to stop, and then he had to hold it while they took pictures. They then took some more pictures of it coming out.
Anyway, Ady’s arse seems to be being ignored these days, and all eyes are on his willy and bladder. Good job really cos he says that the up his bum bit is pretty sore and feels bruised...I tell him I am really not surprised!.
I am very pleased to report that Ady’s urethra has healed and he can have his catheter out on Tuesday. We had to ring the uro nurse to tell her so she could sort an appointment for removal. That was a nice birthday treat.
We got home, and the postman had arrived. Ady had lots of cards from friends and family and in amongst them was a letter for me.
I opened it up, and there was a note saying “Just to help you out a bit, much love, Spans x”. Bugger me, she had sent me a cheque!. I was a bit stunned and thought Oh Em Gee, how bloody nice is that!. I showed it to Ady. He was really really happy and said that I had some really nice friends....which I agree with !
We both said together,”Brilliant, we can get the rest of the coal now”, so I phoned them straight away. I also messaged Jennie to thank her, and she replied that only I would think of buying coal in a heat wave!
Thank you SO much Jennie..Thank you, I don’t know what else to say. I am overwhelmed!

After the hospital, we popped into Sainsburys to look for some pants to hold the incontinence pads in place ready for Tuesday. The girls were home from school, so I told Ady to ring them; neither of them answered their mobiles, so I said to ring the home phone.
 Steph answered, and Ady said “Hi, its dad here, we have just been to the hospital and are nipping to Sainsburys to get some pants. Are you at home?”.....I just looked at him and said “Bloody hell, they say a man’s brain is in his trousers, and it’s true, cos they’ve removed half of yours”. He then realised what he had said....

It got to about half six in the evening, and there was a knock at the door. Standing there was a Tesco man calling me Mary *****. Well, blow me down, she had done me a well thought out Tesco’s shop, with some very sensible items such as meat and veg, milk and bread but most importantly, crisps, kitkats and a birthday cake for Ady !!
That was like Christmas, opening all the bags to see what was inside, with Charlotte squealing at the tuna and Steph screaming at the orange juice.
You know how happy we were Mary, when the girls phoned you with delight. Thank you, it was a lovely surprise!

In all, we had a really nice day. It was Ady’s birthday, we had a lovely surprise from Jennie, Ady is healing well and can have his catheter out, and it was ended with a lovely surprise from Mary.

Our family might be cursed with cancer and we could allow ourselves to wallow in a pit of misery, but how can we, when we are blessed with some truly fantastic people in our lives!

Wednesday, 28 September 2011

Finances and Football

The urology man didn’t phone back the next day, but we did get a call from the appointments people to say that Ady can have a cystogram on Thursday.
We were joking with each other about how it is Ady’s 52nd birthday that day and what fun it is going to be, having his catheter removed and to be back in nappies and incontinence pads...bloody hell, he will be going through his second childhood!
Then the urology nurse rang and said that he was to have the cystogram on Thursday, but they weren’t to remove the catheter. If the cystogram showed that everything has healed well, then she will remove it next Tuesday. We are getting there slowly but surely...
I changed his dressings today, and he is really healing well although there are a few lumpy bits...we will get our GP to check them on Monday.

Now, where do I start with the benefits office......the whole thing is quite enough to give you anxiety attacks and depression frankly!
When I rang them at the beginning of September to put our claim in, I was told that we couldn’t do a claim over the phone because our old claim was still in the system. They would have to send a form, but not to worry because if you are re claiming within six months of your last claim, you can go onto what they call a rapid reclaim thing where they will probably pick up from where you left off. He would send the forms.
Oh goody, I thought. I told Ady and he was really relieved. He is extremely anxious about not being able to work at the moment and provide for us... a bit of a man thing I think!
A few days later, the forms arrived in the post and there was nothing on there that said anything about a rapid reclaim. I rang the 0800 number and checked that I had been sent the right forms. She said that because we are self employed, the forms were correct and it would probably help if I wrote ‘rapid reclaim’ on the front. She also said that she could see no reason why we wouldn’t go back onto the support part where you skip the ‘back to work’ interview and the doctor’s interview, and get £120 a week instead of £65 a week.
That sounded very sensible to me and probably the rest of the world too.
I filled the form out, exactly the same as last year and sent it back. They then sent a form asking about our finances which I filled out, and wanted me to send an up to date set of accounts. I did all that and sent it off.
Then nothing.
Last Monday morning, I rang to ask how things were progressing.
The woman I spoke to was  a right miserable old bag. I don’t think she was very happy in her job at all actually...and..I put on my bestest and poshest voice to make sure I didn’t sound like some benefit scrounger who has decided that living off benefits is a good lifestyle choice.
It made no difference to her, the miserable old bag and she told me quite abruptly that we would not be going through rapid reclaim but staring a new claim at £65 a week.
During our conversation, she said “Well why did he go back to work in March?”...this was when I was asking her about the rapid reclaim 6 month thing. So I told her that he was well enough to work and was ‘cancer free’, he now has another cancer and is recovering from surgery and we don’t know if he will need any other treatment until we see the consultant.
I don’t actually think she believed me, and I might as well have told her he had a nasty headache.
We have been completely truthful with these people. Ady went back to work as soon as he was able and with the agreement of his GP. We stopped the benefits the day he went back to work. Sometimes, I wonder if it pays to be honest and not screw the system...It’s not our fault he has cancer again so soon after the last one.

I was hopping mad and livid that the woman was so stand offish and rude that I phoned again in the afternoon to speak to someone else who would hopefully be a bit more helpful and understanding.
Thankfully, she was.
I explained to her about the rapid reclaim and what I was told. She said that I had been told wrong and that you can only go onto rapid reclaim if you are reclaiming within 12 weeks of your last claim. The six month bit is if you didn’t turn up to your ‘back to work’ interview or you failed your doctors assessment, then you couldn’t re claim for 6 months.
Well, that was a bit different to what I was told by two different people !
She also told me that our claim was at the decision makers (as we are self employed) and that it would be sorted any time soon. She thought it was a bit silly that they were asking for a statement of accounts from us as it was all on the computer from the last claim. They might put us back onto the support group who get £120 a week or they might make us start again with £65 a week and a doctors assessment.
We will have to wait and see. I will ring Friday to see what is going on....

When our girls were at primary school, Ady and I did the after school football and netball clubs. Even though both girls have left now, we still do the clubs. Its good fun and the kids enjoy it. They play matches against other schools and we are the coach and umpire/referee.
Ady was disappointed that he was going to miss a few weeks of training the boys, but I told him he cant possibly go there in his state with his piss bag. The class teacher was doing it until Ady was better. I am also a mid day supervisor, and the boys always ask me how Ady is (I don’t think they know he has cancer) at lunch time and when will he be back.
Today, he went to do the football. I gave him strict instructions that he was not to show his piss bag, wounds or run around.
When we arrived, some of the boys were kicking the ball around outside, and the rest were getting changed in the classroom. Ady walked in and one of them saw him, ran up to him and said “Ady you are back! Are you here to do football with us?” He was so pleased to see Ady, he had tears in his eyes.
Ady looked down at him and said (in his usual gruff farmer type voice) “’ello boy, yes, I am doing football” and with that the boy ran outside shouting to the others “Ady’s here, Ady’s here!”. The next minute, they all came running in to see him with big smiles on their faces.
They really adore Ady and it was lovely to see. Those boys have absolute respect for him and try their best to impress him with their skills. He in turn gives each one of them encouragement and brings out the best in all of them, however good they are.

Oh yes, and when we were at the hospital the other day with the piss bag crisis, when I told the nurse that we didn’t need them anymore and he wanted to check Ady before we went, he asked where Ady was. I pointed to him at the same time an elderly man was walking past down the corridor. The nurse went towards the elderly man thinking I meant him, until I called him back and said “I have brought my husband, not my father, it’s this man sitting here!”pointing to Ady again. He was very surprised that it was Ady with the problem and the others sitting waiting to be seen smiled and chuckled. Ady said to him, “I might have bloody prostate cancer, but I’m not that old!”

He will be 52 tomorrow. I’ve told him that he is not getting any presents for long term use until we have been to see what the consultant has to say....just sayin’...

Before you think I am a heartless cow, he laughed and agreed !

Monday, 26 September 2011

Frustration Part 2

I was a bit miffed at the nurse on the phone. I know they are busy, but they should at least pretend that they are bothered.
Ady has felt a bit left on his own to get on with it. He went into hospital, came out 24 hours later armed with bags and a piece of paper about catheter care, but nothing with any substance and the NHS direct number on it, and that’s it. We are just sort of on our own with it all.
Ady said that he thinks it would be nice just for someone from the medical profession to check how he is doing..they did when he had the bowel cancer, they just rang to ask if everything was OK. I often wonder and worry how people 20 years older manage with this stuff.

Anyway, this evening, everything was as normal and then Ady called me from upstairs. He said he had a pain in his willy and belly, and he was pissing everywhere and nothing was going in his bag.
“No problem”, I said, “You have a blockage” . I put lots of towels on the bed and got him to lie flat and drink, drink and drink some more. “We need to flush it through” I said
After a little while, Ady said “Bollocks to this, I think I need to go to the hospital” nothing was going into his bag.
The consultant told us that if we had any problems, then we were to go straight to Maidstone A&E, cos that is where urology is, and no other hospital. So I rang Maidstone and the lady put me through to the on call duty urologisty person. He was very nice. I explained all the problems and he said that he needed to see him. I said we would be there in an hour and he said he would look up Ady’s notes and would be waiting for us. Great,I thought.
We sorted the girls to be looked after by Ady’s brother, who came over straight away, I padded Ady up with a load of incontinence pads cos I didn’t want him pissing in my car and I was pleased that I had managed to keep piss off my bed. I grabbed all his prostate notes ( I have one set for prostate cancer, one for bowel cancer, one for his bones and one for miscellaneous  illnesses) and off we went.

We arrived at Maidstone within the hour and I booked Ady in with the receptionist. I told her that I had spoken to a lovely man who said he would be waiting for us. She asked his name and I told her that I didn’t manage to catch it, but it had lots of ‘A’s,’Y’s,’M’s and ‘H’s in it. She was none the wiser but said she would bleep the on call urologist.
We took our seats amongst the sick and injured, well, I think they were anyway, but I suspect half of them had turned up to watch the free telly on the wall because they seemed very able bodied to me. Some had a limp or were holding an arm, but you could tell that they were exaggerating their pain...something I would never do !
After a while, I asked the receptionist if she had found him. She said a nurse would be calling us shortly. Well, true to her word, the nurse called us into a room. She told us that the Urologist had gone home. Me and Ady looked at each other and chimed “Are you having a laugh? Gone home??” I actually wondered if he had looked at Ady’s notes and it said something like ‘miserable wife that moaned to the PCT about hospital choice – steer clear’
I said that he said he would be here, waiting for us and we were here within the hour, why has he gone home?
She apologised and said that we could go and wait in ‘majors’ because there were only two people in front of us whereas in ‘minors’ there were 17.
She took us around to majors and there we sat, and we waited, and we sat some more.
Ady then quietly said to me...”Em, I think my bag is filling up”...this should have been a happy moment, but I thought to myself FFS, it bloody would now, wouldn’t it !
He went off to empty his bag and came back to tell me there was a bit of debris from his bladder in it. “Great” I said, “That was what was causing the blockage, at least we know” we sat for a little while longer to make sure things were back to normal.
We then agreed that it was a bit pointless seeing anyone now, so I went to tell the nurse that we were off home. He asked me why we were here, and I explained which operation he had had and what the problem was. He asked to just check Ady over before we went, to make sure it was not a blood clot causing the blockage.
The nurse was lovely and said all was fine. I grabbed the opportunity while we were there, to ask for some more catheter bags to take home. He sent another nurse to a store cupboard to get them and we had to sit in the corridor and wait.
Well, blow me down, while we were waiting, the urologisty man came up to us. He hadn’t gone home at all, but had to pop to Canterbury ! (hospital I assume)
He had a good chat with us and said that we were right to come to the hospital. He took some copys of Ady notes I had brought and said he would also chase up the appointment to have the catheter removed and would ring me tomorrow. Ady said “You had better have the wife’s mobile number cos she will only want to know what you have said and I wont have a clue, I am just the patient, she is in charge”. The urlolgisty man laughed and agreed that he should concentrate on being the patient and I should concentrate on the rest.

Ady has always said that he is the better one to get the cancer, and I am the better one to do the sorting and organising. He is a very stoic and well behaved patient, much better than I would ever be.

One way or another, we will get this bloody appointment !!!!

One day, we might get our benefit money too, rapid reclaim my arse!

Oh yes, and one more thing, we were told that once the histology is in from the prostate, we will get an appointment to see the consultant to find out if it has spread and if any other treatment will be needed. This will be 2 to 3 weeks after surgery.
The letter came today. The appointment is for 17th October. That’s right, FIVE weeks to wait...Well,I don’t bloody well think so !!!

We are Emma, Ady Charlotte and Stephanie and we live at
Frustration Lane,

Frustration Part 1.

I am going to write a few little bits now because I am imagining that this little chapterette is going to be a bit of a frustration if today is anything to go by!

Since Ady had had his catheter in, we have been making sure he doesn’t become constipated and he has also been drinking plenty to keep things flushed through.
He has had the odd uncomfortable bladder spasm which is to be expected, but each time he has a poo, he bypasses blood down his willy. It is quite fresh blood and a good tissues worth.
I spoke with our nurse the other day when I was asking where the appointment was to have the bloody thing removed was, and told her about the blood. She said that it was quite normal and not to worry unless it was becoming frequent. As he wasn’t pissing blood everywhere and he has no temperature, and no other problems (apart from the obvious), we decided not to worry.

Last night,... or was it the night before....anyway, he called me from the bathroom to say that he felt he needed a poo so sat on the toilet. A load of blood bypassed his catheter and the feeling for a poo went and did I think that was normal. Normal? I thought, I am hardly the right person to be asking what is normal and what isn’t!
I said that I didn’t think it was particularly normal, but I would check. I belong to a group called ‘Ladies on Line’. It is a women only group where daughters, wives, sisters and any female affected by prostate cancer can come together and chat, joke, laugh, cry and ask.
We are all affected by prostate cancer in different ways. Each person is at a different stage of the journey. They all give their experiences and advice, what they don’t know isn’t worth knowing!’s a brilliant group, and I am very glad I was invited. Elise, who runs it works tirelessly ...she is a right old trooper that one, and what’s more she is a nurse !
I logged on and asked if Ady is normal. Elise reassured me that it is not an emergency and it is all fairly normal and to check with a urology nurse the next day.
It would be nice if we were told this sort of thing could happen at discharge, but hey ho...

The next day, I rang the nurse who said that we should be getting a letter with an appointment to have the catheter removed, and if we didn’t get one then we were to ring her, so I rang her, cos we still haven’t got a letter yet.
She sounded slightly busy and harassed. In fact, I got the impression that I was somehow bothering her. I asked about the bleeding while having a poo and she said that was normal. I then explained that Ady bypassed blood while not having a poo. She said that that was not normal. I asked what should we do, and she asked when our appointment was.
I very calmly and nicely said that we don’t have one yet and that was the other reason I was ringing *sigh*. She said she would chase it up tomorrow......With that, the phone call ended and I suddenly thought, FFS, what about the bleeding !!!
Ady said that he felt that there wasn’t quite so much blood today, so I thought let’s leave it and if we have a problem then we will just go to the doctors (still such a lovely man).
Oh, and of course, as Ady has another week at least of the catheter, we have run out of bags because they only gave enough for two weeks and on Wednesday, we will be moving into week three. Have you ever tried to get hold of district nurses? I have and it’s a nightmare, so I thought bollocks to that, and called my friend to pick me some up.

Charlotte has been offered her HPV jab for tomorrow. I have turned it down, along with some other parents who have looked into this vaccine and not liked what they have found. Why anyone would want their child injected with aluminium (a toxin to the nervous system) and rat poison amongst other things that can cause infertility is quite beyond me. She can use condoms and have regular smears...she will have to have that, jab or not !
Christ, they will be bringing out a chicken pox vaccine next...oh hang on, they have!!
Anyway, enough of that cos I have got a whole load more happenings to talk about in my next bit of blog.

We are Emma, Ady, Charlotte and Stephanie and we live at
Prostateless Avenue,

Saturday, 24 September 2011

Friends and Viagra Part 2

A few weeks ago, I received a text from my friend faye. She is very much a ‘no frills’ person who says what she means and means what she says.
The text message said ‘Don’t start asking silly questions, I just need your neighbours number’. I replied ‘As long as you don’t do anything silly, her number is ******’, she replied back ‘You daft old bat, I am hardly going to land a plane on your roof!’, and that was it, I told my neighbour to expect a call from a mad woman, wondered what was going on, but I just couldn’t guess at all why on earth she would want to speak to my neighbour!
With so much else going, I didn’t think about it very much apart from an occasional passing thought.

Yesterday, I was out working, and I was trying to get finished in time to meet with Steph from school. I got a text from Ady asking me to ring him. I thought to myself ‘I hope he hasn’t had an explosion and pissed all over my new settee!’
I rang him and he told me there was a lady at our door with a load of logs to deliver. He was very confused because neither he nor I had ordered any. The lady said, “Oh I know you haven’t, these are with love from Sue in Devon”
“Bloody hell” Ady said, “Have you come all the way from Devon with all these logs?”
“Oh no” she laughed “I got a letter from Sue asking me to deliver you some logs, I am local”

I was listening to all this on the phone and Ady asked me if I knew anyone called ‘Sue from Devon’ “Yes!” I said, “That is Sue **** from Devon...she is my friend from the forum, we met up and had lunch once a few years ago...Bloody hell, she must have ordered us some logs, what a lovely thing to do!!”

Ady used to think that my internet friends were a bit mental...not any more now...
I got off the phone to Ady and drove to meet Steph. The sun was shining, Ady was at home, piss bag in one hand, log in the other, showing the lady how to stack them so they don’t look like a pyramid, and I had the biggest smile on my face thinking to myself, ‘what a bloody lovely thing to do....really really lovely.
We might have cancer in this house, doing its best to piss us off, but how can you be, when friends do such huge acts of kindness!

When I got home, I saw all the logs, there is a mixture of ash, oak and silver birch..perfect for a nice warm fire!
I rang Sue immediately to thank her and she said she was glad it had made us so happy. She was going to send some flowers, but thought they wouldn’t be much use in times like these and something more practical was needed.
Ady completely agreed and is absolutely chuffed to bits...Ady is not someone who is often chuffed, but he keeps walking outside to check on his logs with a big chuffed smile J
I asked Sue if it was OK for me to blog about it because this is a blogging event! She wasn’t too sure and felt a bit embarrassed but agreed in the end when I promised to put some pictures of the logs on.

I was thinking later that day, and then the text message from Faye all made sense. Sue had asked Faye to find out if we had a log store. She asked Mary, who has been to my house and she didn’t know and couldn’t remember, so the only thing she could do was to ask my neighbour and also see if she could take delivery if we were out.

There are such nice people in this world!!

Thank you Sue from Devon xxxxx

Friends and Viagra Part 1

Ady is getting into this blogging lark, and although he hasn’t read it himself, he is finding it amusing when he chats to people who have.
It’s great, cos they know exactly what is going on, what we are thinking and feeling as we travel on the cancer bus. A lot of what is written on here, is not what you would necessarily talk about with people face to face. It makes the visitor feel uncomfortable if you do, but at least they can catch up on here and then visit and have a good laugh about the funny bits !
I love my blog because I can empty my brain of garbage, ready for it to be filled the next day. I can also look back to see how far we have come and giggle about the funny bits.

Ady has started taking small walks to build up his strength. He wanders up to the village and back and buys anything light to carry home, so I still have to get the milk!
He usually bumps into people he knows. They immediately tell him how well he is looking, which, to Ady, is an invitation to lift his top and show his dressings on his stomach *rolls eyes*and pat his piss bag. He then launches into a detailed explanation of his operation and piss problems before moving onto his bowel movements and woes. He generally ends by saying “You might think I look well, but you should know what I have been through”....In a way, I think it irritates him that he does look very well and not particularly ‘cancerous’.
Last Friday, he went to see his friends who are the local mechanics at their garage. I told him I had to go to work at 11.15 and the chickens were out. He said he would be back way before then to keep an eye on them....he wasn’t back by then at all, so I shut the chickens up and drove off to work. I got to the end of my road, and there he was, standing on the corner of the street, chatting about prostates to some bloke with a big smile on his face. I had my window down, and heard him say “Oh look, there is the wife, I am supposed to have been home hours ago!”..Oh well, at least he is happy !
Ady has become a right old curtain twitcher too, and spends a lot of time nose poking at what everyone else is up to, reporting his findings to me when I get home.
He has also started opening the post again, like he did last year, and phoning me to tell me what letters have arrived and what are they filing system has become a complete mess !

Before Ady’s surgery, we were told by the onco nurse that the plan of events would be, operation, catheter out two weeks after, see surgeon for results 3 weeks after and PSA test 6 weeks after.
The nurse who discharged him said that that was wrong and the plan of events would be, operation, catheter out 2 weeks after, if you want the results, grab a passing consultant at catheter removal and they will look it up and tell you in the corridor, or phone your GP, PSA test 6 weeks after and consultant in 3 months!
Oh well, I thought, let’s just ring our GP and get the results from him and wait for the letters to come through the door about other appointments.
No letter arrived for an appointment to have the catheter removed, so I rang our nurse to tell her this and ask if I was being impatient, to which she replied that no, I wasn’t and we should have had an appointment by now and she would chase it up. I then checked with her about the plan of events and she said that the discharge nurse was wrong and it will be catheter removal 2 weeks after the op, consultant for results 2 to 3 weeks after the op and PSA 6 weeks after.....blimey noras, I really don’t think anyone knows what is going on and who is doing what! I feel very sorry for people who are not quite on the ball and wont chase things up !
We did get a call from a urology nurse, to say that Ady can have his catheter removed at the new hospital at Pembury, to save travelling to Maidstone...the only problem is, is that he would have to wait another week because the rooms weren’t ready yet. The hospital is brand new and they have only this week moved all the patients from the old hospital to this one. We have to wait for a letter to arrive with an appointment, and if we don’t get one, then we have to ring her next week and she will book us in *yawn*.
All is not lost though, as we did get one letter in the post from the hospital. It was from the surgeon explaining to our GP what he had done. Within the letter, was a suggestion that Ady starts Cialis twice a week to help with his erectile dysfunction.
Ady opened the letter, and asked me what Cialis was for. I grabbed the letter from him saying “Never you mind, you won’t be needing any of that with the state of your blood pressure!” and thought to myself, twice a week? TWICE and bloody WEEK???  Jesus, for all the inefficiencies from the hospital, the consultant was certainly efficient with his letter....and optimistic....

We still haven’t heard from the benefits people, and not received a penny yet, but on the up side, Ady has only forgotten to close the tap on his bag once until he realised that he was pissing down his leg.

Wednesday, 21 September 2011

One Week On.

Right, let me have a think about what has been happening this week.....

Ady seems to have got the hang of the whole catheter thing and very luckily for him, he has not pissed anywhere apart from in his bag !
He did have a rather excruciating pain in his willy the other day, and came to me doubled up in pain, but I think he was passing a bit of sediment through the tube. I made him drink plenty more water to flush it all through and he has been fine ever since.
When he first came home, not very many people rang or called round, in fact the first couple of days, no one did. Ady was a bit miffed about that, but we agreed that firstly, some people don’t think prostate cancer is a biggie, secondly, some people think that because he has had keyhole, he will be as right as rain and thirdly, they are probably getting all the info they need from this blog!
Mind you, he was so washed out that he would have had trouble staying awake for visitors anyway. Of course, on Sunday, the world and his wife rolled up at the door and we had a very busy day with lots of laughing, piss taking and people coming and going. He slept all day on Monday !
Since he has been home, Ady has been walking around like a ruptured duck and saying that this op has taken more out of him than the last one. He feels like he has been battered around the guts 47 times with a baseball bat. I had to remind him that although he doesn’t have the big cut down his belly to show, they have done the same inside as what they would have done if it was open surgery.
If anyone asks him how he is, he immediately lifts his top to show his four dressings and then says “Not too bad thanks” and I think to myself, for Gods sake, don’t pull your trousers down and show them your catheter as well !

My sister Diana came to visit yesterday, and she asked Ady what he thought of my blog. He said that he didn’t mind at all and ‘if it keeps the wife happy’ then thats OK. He said “They should all know what I am bloody well going through, from my piss problems, crapping problems and everything that goes with this cancer”

He has hopefully got one more week with the catheter and then he moves onto pads. “That will be when I have problems with you pissing on my settee” I said “Oh its OK “ He said “I was thinking about that and I think I might wear my work waterproofs and put an elastic band around the ankles to hold it all in”...Oh dear God help me, I thought !!
I have been feeding Ady lots of fruit and prunes to keep his bowels moving because the last thing you want, is straining when you have a catheter in. As it is, he bypasses urine and gunk when a poo is passing by (which I understand is normal in these situations), but the last thing we want is a nasty explosion in the bathroom, which by the way, was beginning to smell a bit like a sluice in an old peoples home until I bought some febreeze and bleach.
Last Saturday, I was shopping in Morrisons, feeling a bit gloomy and wondering what to cook for tea.
I decided to get all the random bits and pieces that are knocking around out of the freezer, cook it all and put it on the table and we would have ‘snatch ‘n’ grab’...our posh friends call it ‘pick what you like’ ffs, anyway, Steph sent me a text to tell me that my lovely friend Moo had popped in to see us and had brought a chicken casserole and apple crumble. Isn’t she lovely! So I stopped feeling sorry for myself and realised that I have no reason to, I don’t have cancer (I don’t think) and actually, I am a lucky girl in lots of ways.
Moo’s crumble was so lovely, the girls have asked her to do another one.
She even dropped by yesterday with a spaghetti bolognaise which we are having for tea tonight.
We are blessed with some really lovely people in our lives J

Bless the benefits system and all who sail in her...we hadn’t heard anything from them after I took the trouble to fill out the 52 page form they sent, then yesterday they sent another form to fill out for self employed people..they also want a set of accounts *yawn* and say we probably wont start getting anything until around 5th October. I will make the last £47 we have left in the bank stretch !

So that’s it at the moment really. Ady is recovering very slowly  but surely and life carries on. I am off to my childrens old primary school to do the netball after school club as a volunteer, Ady is watching afternoon TV inbetween dozes, Steph will be on her way home soon and Charlotte is doing an after school club so will be late. No doublt she will ring for me to pick her up cos she wont want to get the bus!

Next week, I should have more to write about because Ady might have his catheter out and we also might get the histology report on the offending prostate.
We are Emma Ady Charlotte and Stephanie and we live at
Prostateless Avenue,
Piss City,

Friday, 16 September 2011

Tubes and Toes

The girls went to bed quite early last night, without my telling them to, cos they were so tired !
Ady and I went off to bed not long after and I got his night bag, along with the stand ready to attach to his day bag.
He got into bed and I plumbed him in. When I collected him from the hospital yesterday, the nurse who was discharging him said “I have attached his catheter and the other nurses think he should have one with a longer tube on, but I don’t think he needs it”. Ady was sitting in the chair at the time and I didn’t look at the tube myself, I trusted that she knew what she was doing and as it has been a few years since I have fiddled with catheters, I trusted her judgement.
Well, blimey noras, blow me down, yes, the tube was VERY short ! There was hardly any length of tube from the end of his willy to the bag !
I managed to plumb him in, and told him not to move too much in the night because with this whole tubing business, there is not much room for manoeuvre. He kept asking if I was doing it right and were the taps on and off and was I SURE I knew what I was doing. “Of course I do” I said “they are a bit better made that when I used to do them for people, but they are no different and it isn’t rocket science” and with that, I turned the light off and got into bed.
Two minutes later, he said “Oh my God, what’s this in my’s a tube that has come away I think”
I said, “Oh for goodness sake” and got out of bed, turned the light on and he handed me the cap bit that you remove so you can connect the night bag to the day bag. During the day, you pop it on the end of the tube when you have washed the night bag through to stop bacteria creeping in.
I took it away from him and put it on the side and we finally went to sleep.
It just so happens, that one of our neighbours works with the district nurses that are attached to our GP. She is lovely and has said to me that if there is anything we need, just text or pop round and she will sort it. So I sent her a text in the morning asking her if she had a spare day bag with a decent length of tubing. Within 15 minutes, she was at my door with an array of bags ! That’s service for you and she hadn’t even started work yet !
I de plumbed Ady and emptied his bag and thought I would wash it through when I get back from the school run. I will also put the longer  day bag on and get into some sort of routine.

Ady was asleep on the sofa when I got home, so I thought I would rinse out the night bag. I did that and went into the bedroom to get the cap that caused him so much concern last night to put on the end of the tube.
There is a step down and another step up to go from the bedroom to the landing. Sometimes I will step down and then up and other times I will stretch across, missing the down step. Today, I stretched across to miss the down bit, but I didn’t stretch quite far enough, completely missing my footing. I went down like a sack of shit, smashed my toe on the step and as I went down, I smashed my shin on the edge of the step and walloped my head on the hamster’s cage. My glasses flew across the landing along with the bloody cap (sodding thing!).
I screamed, yelped and swore. I thought bloody hell, I have broken my leg. Then I thought, bloody hell, my head is bleeding. Then I thought, bloody hell, I’ve broken my toe!
I made such a drama and commotion about it all that it woke Ady and the hamster up.
He came rushing as fast as he could to see what had happened and if I was OK and I stayed lying on the floor, not able to move cos the thought of all my broken bones and gushing blood was making me feel faint ! I can happily nurse anyone, but not myself!
Ady stood by me saying “Bloody hell woman, you can’t be hurt, who is going to look after me”
I said “Can’t you see that I have broken all my bones and blood is gushing everywhere?”
“Erm, no” he said, so I checked the floor for blood and my limbs for broken bones and thought to myself, hmm, no, I spose he’s right .
My toe, leg and head really hurt, so I looked in the mirror to see that I have cut my head up by the hair line and I can feel a bruise coming down my forehead. My leg is bruised all up my shin and my toe next to my big toe is swollen and numb, although it is tingling now.
I wonder if my toe might be broken, but my pain threshold is nil, so it is probably bruised.
So today, we have been looking after each other.
I met with the girls after school today as they need some new underwear. While we were in the queue, they asked me why I was limping, so I told them what had happened, and they roared with laughter all over the shop...little buggers, no sympathy there then !

I am sure I need a plaster cast for my toe, but nobody else does. Mind you, I was sure I needed an ambulance earlier too...I have spent all day hobbling my best hobble and not getting much sympathy at all !

Thursday, 15 September 2011

Back Home

I woke up this morning stretched right across the bed with all the cats scattered around me...pure bliss !..and then I realised that I had woken half an hour late !!
I shot out of bed and woke the girls who were sleeping soundly and realised that bugger it all, I have all Ady’s jobs to do as well as my own!
I made sure the girls had the right books in their bags, sorted lunches, breakfasts, PE kits, drama clothes and dancing clothes, fed the cats, turned the fish bubbles on and made sure they had made it through the night without the cats hooking them out of their pond, let the chicken out and fed them and cleaned the litter tray because our disgusting cat called Princess of all names (she is a rescue cat) has decided that she can only shit in a tray that is outside !
We all got in the car at 7.30 and drove to school.
Ady phoned when I got home and said that he had had a good night sleep but he sounded very husky. He said his throat was sore and dry. I told him it was probably that air tube thing they shoved down it to keep him breathing I expect. He was happy with that explanation and proceeded to tell me about all the other people in his ward, what they were in for, how long they had been there for and who visited them and when.....”So you have settled in well then” I said, He then went on to tell me all the nurses names and what they were all like, who was nice and who wasn’t...bloody hell, he had only been there a few hours !!

During the morning, my friend Yan came round to see me, and then came my sister Catherine, and then came my other friend Sarah. It was very nice to see them all in between answering calls and texts from various people wanting updates.

Ady then rang and said they had removed his drainage tube and that I could come and get him and the nurses were doing the paperwork ready for his release ! He had been seen by the surgeons second in command and he was very pleased with him and can carry on getting better at home.
Off I went, back to Maidstone. The nurse came along and explained about his catheter, and how to attach the night bag to the day this point, Ady was looking a bit confused, so I told him it is no different to the attachments on his hosepipe in the garden. Of course he completely understood that !
We were given some dressings so I can change them in a few days and keep an eye on things and told that under NO circumstances must his catheter be removed for at least two weeks and that if we have problems with blockage or anything, we must make sure they know that.

So that’s it, Ady is back home after all that, and is wandering around the house tapping his bag and showing me, saying “Do you think I should empty it now?”..I have two weeks at least of this !
He occasionally says “Blimey, this bags is filling up quickly, do you think it is alright?”
I can’t wait to attach his day bag to his night bag...having OCD and checking the taps are open really isn’t a good mix. I have already decided that he can wake me only once to get me to check it, after that I will  threaten to give it a good tugging !
  We were originally told that we would be seeing the consultant in two weeks to get the histology results and the nurse at the same time to see if the catheter can be removed. Now we are only seeing the nurse, but have to phone our GP for the histology results. Ady then has his PSA test in six weeks to see if he is cancer free, that is when we see the consultant.

Thank God this bit is all over with. Hopefully it is now just the recovery. We will think about everything else when the time comes that we need to think about it but for the moment, we will concentrate on getting his bladder healed and working again.

We are Emma.Ady, Charlotte and Stephanie, and we live at
Prostateless Avenue,

Wednesday, 14 September 2011

Surgery Part 2

Well, just as I pressed 'submit' on my last blog, full of worry, woe and angst, the phone rang.
It was Mr D the surgeon, phoning to say that the operation had gone well and that he had managed to do keyhole surgery !!!  Did you read that right? Yes Bloody KEYHOLE SURGERY !!!!!!!!!

I was so busy thinking blimey bloody noras, you did keyhole?, the one thing they all said couldn't be done??, you are one good surgeon !, that I missed everything else he was saying, but I think he said it all went much better than he expected and that Ady was in recovery and would be on the ward in about an hour.

I completely forgot to ask any questions like, did he think he had got it all and did he remove any lymph nodes and did they look suspicious, but that can wait until we see him again. For the moment, we will enjoy being SO happy that everything went well. You have to grab every bit of happiness you can on this ride !

I told the girls what had happened and it was lovely to see them so happy, they were bouncing off the walls !

So, we shut everything up in the house and put the animals away, and drove off to Maidstone.
Oh, my, God, the girls were SO loud, singing away, screaming and laughing and generally being two very very happy girls indeed.

When we got to the hospital, ( the girls know to be on best and quiet behavior when visiting)  Ady was still in recovery, so we waited around, and while we were waiting, Mr D walked past, so he stopped and shook the girls hands and had a chat with them. They went all shy and polite which made me chuckle.
I am SO bloody proud of my children. They are under a lot of strain, more than any child should be I think, and they are handling all of it so well !
Then they wheeled Ady out. He looked bloody well for someone who had just had surgery !!
They settled him into the ward and gave him something to eat. He still cant believe he had keyhole !

We left after a little while to let him get some rest and came home.

The girls have now gone to bed...its been a day full of mixed emotions for them. They must be shattered !

It pays to fight for what you want. We could have ended up at Medway, travelling for 3 hours and 60 odd miles a day for a week and Ady could have had open surgery as keyhole was thought to be out of the question.

We fought hard for the hospital we wanted, and ended up with that hospital, a different, more approachable surgeon and keyhole surgery, home tomorrow. Funny how things turn out in the end isn't it.

We have a long road ahead. Ady has his catheter in for two weeks minimum and then has to work hard to regain his continence. In two weeks, we will find out the histology on the prostate. We will get a proper staging and gleason score (they sometimes go up a notch after surgery when they have the whole thing to look at and not just snippets from a biopsy). Six weeks later will be his first PSA test which should come back as undetectable. If there is PSA there, then he still has cancer and radiotherapy will be on the cards.

But for now, we will enjoy the happiness of knowing that everything went well today in the end.

Me, Ady, Charlotte and Stephanie will all sleep very well tonight ! xx

Surgery Part 1

This morning, the girls wanted Ady to take them to school, so while he did that, I stayed at home and phoned the bed lady to see what was happening and what time did they want us there.
She told me that all the surgeons were having some sort of meeting and that surgery would be starting late. She couldn’t give me any idea of times or anything, just to keep him nil by mouth and they will ring.
It got to about 10 o’clock and I started thinking to myself that the onco nurse said Mr D will be wanting to do Ady’s surgery at about 10.30. I was worried that he will turn up after the meeting and ask where his patient was. Ady had gone to bed to try and sleep away the anxiety and I phoned the bed lady again.
Another lady answered the phone and was really lovely. She explained that this meeting was a one off and not to expect a call until after lunch and surgery won’t  happen until this evening, if at all, as they were completely full up with beds!
Poor, poor, Ady. He started getting very anxious and was saying how bloody unfair this is.
The waiting and not knowing is an absolute killer. The stress of it all is taking its toll on Ady and he started looking very washed out.
My hair is falling out so much atm that when I shower the water can’t drain down the plug until I clear handfuls of it out !
My other worry was that he had been nil by mouth since last night and that he is a diabetic. My friend Sal reassured me that he will be fine.
I did all the housework, and was just about to start cleaning the cupboards out ( well, you need something to do when you are waiting for something to happen that you don’t want happening at all !) and it was the bed lady asking us to come in !!
What a relief that was I can tell you !!
So, off we went in the car, aware that I had to be back by 3 to pick the girls up from  school. Yesterdays plans had now gone out of the window !
We arrived at the hospital at 1.30 and was seen by a nurse who went through medication and wotnot, and then the anaesthetist came and spoke to Ady and explained about pain relief and all the options what he thought was best. They talked about his last epidural which was a bit of a disaster and the guy was brilliant and explained why it was a disaster and how he will try and make sure it isn’t this time. He reassured Ady that he would be on standby to give morphine if it was and not leave him in pain.
Then, along came Mr D the surgeon with a lovely Irish accent.
He explained how he would try and do keyhole surgery, and if not then he would do open surgery there and then.
He explained the reasons why keyhole may not work, and spoke about his previous surgery and the organs sticking together and not getting a clear view.
He then looked at Ady’s  scar and said that it is right where he wants to go in...bugger !
The colon cancer surgery is very close to where he wants to get to the prostate and there is a possibility that it may be a bit like cutting through concrete, what with all the scar tissue in the way and he may not be able to remove the prostate at all. He also said that if he has any concerns about joining the urethra back to the bladder, then he will just close him back up, leaving the prostate in and offer radiotherapy.

He told me that surgery usually takes a couple of hours, but said that I was not to worry if it was getting to 7 tonight and I hadn’t heard as he would still be in surgery. This would possibly not be a straightforward operation but he will ring as soon as he has finished.

He then looked up and down the ward thing we were in to make sure no one was near, leant forward to Ady and said “How are your erections?”
Ady said “They are great thanks”
He said “Well, then won’t be any more”
Ady said it wasn’t a problem and I said that I felt me headaches easing up already.
I left Ady at half two this afternoon and went to get the girls from school.
We have had tea, the girls have showered and bags packed ready for school tomorrow and homework done.
Will he have keyhole?

Will it be open surgery?

Will his insides be like concrete?

Will he be able to remove the cancer?

So many questions, but me and the girls are here, waiting for that call.
Christ I feel bloody sick and the girls are all ready and waiting to go and see their daddy.
 They have only asked once when we are going to go...I wish I could answer them, but I spose on the up side, the longer the wait for the phone call, the more likely the prostate is coming out...but also the more likely it is open surgery,...or the more likely there are problems.....I feel like crying but I mustn’t crumble now.

Tuesday, 13 September 2011

The Day Before.

Back in June ,Ady was diagnosed with prostate cancer. 5 out of 12 cores positive, all 5 out of 6 cores positive on the left. One of the cores at the base contains 80% tumour. (The base of the prostate is the top part on pictures next to the bladder....(don’t ask why, but I expect there must have been a man involved in the naming process somewhere along the line and got the whole thing topsy turvy!).
He has high grade PIN (malignant looking cells to you and me), is stage 2, gleason 7 (3+4) with Perineural invasion (some people think this means the doorway of escape and for the cancer to spread) and has a starting PSA of 24.5
His PSA did go down a bit to 19.8 in July, but has crept up to 21.2 this week. The fact that it is hovering is a good sign and means it isn’t having a party around his body...just the prostate, we hope.

We have been to doctors, nurses, consultants, urologists. We have laughed, cried , worried and hoped.
We have been for biopsies, MRIs, bone scans, blood tests and learnt how to do pelvic floors.
We have fought with the PCT over hospitals and won.

And now, here we are, the day before surgery.
We were told by the onco nurse that we needed to be at the hospital for 7am tomorrow. We arranged for the children to come with us and for me to drop them at school after.
I looked at the letter today, and it said that we need to phone the hospital on the morning of surgery, between 7 and 7.30 to see if there is a bed available. I thought, hmmmm, so I rang the bed lady (different one from last year – different hospital) and I must have been talking to her sister !!
She was very huffy and puffy and stressful and said “ Who on earth told you to come in at THAT time!?”
I told her that the onco nurse told us and I had made plans for my children because we live quite far from the hospital. She huffed and puffed a bit more and I got the impression from her that I was the patient’s wife from hell. She didn’t know who I was cos I hadn’t given my name btw. She decided to pass me to the staff nurse before she blew a gasket.  Shame, cos I was about to ask her if she was happy in her job and suggest that she gets her blood pressure checked on a regular basis.
I spoke to the nurse, who was very nice. No huffing and puffing at all. She explained to me that they ask patients to come early if they are constipated as they will need an enema before surgery. “Is your husband constipated?” She said “Will he be needing an enema?”
“No” I said, “He will be shitting himself”..
”Literally?” She asked,
 “Probably” I said, “But I will make sure he has some prunes for tea just in case”
When I put the phone down, I did recall the onco nurse saying something about constipation , but I forgot !
So that was it, I will drop the girls off to school tomorrow morning and come home, ring the hospital to make sure there is a bed (can’t wait to say good morning to the bed lady in a cheery voice) and take Ady to the hospital for surgery at about 8.30am.
This evening, we are going to have tea as normal, pack Ady’s bags and I expect the girls will make Ady a good luck card each and give him some bits to take with him.
I have written out what medication he has and will make sure he has enough for hospital and I mustn’t forget the camera.
We will probably sit around the table and play cards tonight and maybe a bit of Jenga too, and just have some family time.
Before I forget, I must tell you that Ady bought me some flowers the other day, to thank me for what I have done and for what I will be doing. He also told me not to forget to blog it !

So that’s it for the moment. It feels like one little chapter is closing now and another one starting.
I feel SO sorry for Ady, that he has to go through this all again, all within a year of the last time. The last few days, he has been saying “Not long now darling” and “It’s creeping up now”. He REALLY doesn’t want to go for the surgery. None of us want him to. None of us wanted this bloody cancer in our lives in the first place, but we’ve got it and so we will deal with it.

I wish we knew if there will be a bed free in the morning, whether he will have laparoscopic or open surgery, if he will be in for 1 day or 5, if it has spread of it hasn’t.

Oh well, let’s take one day at a time and start by hoping that he actually makes it through the surgery.

I will update tomorrow when I can. J

Monday, 12 September 2011

The Financial Side of cancer.

Finances are usually considered a private affair, although I have never understood why tbh. I think that the more money you have, the more private it is. Perhaps that's why I have never understood the privacy of it all....because I have never had squillions. Ady and I have always has enough to live on. We are not materialistic people at all and don't understand the need for the latest in this and the poshest in that. We have never charged as much as we possibly can for the work we do, we just charge enough for what we need. 
Ady is  pretty uninsurable as far as any sickness cover and critical illness cover goes, so we have never bothered. We did look into it once, and it would have cost us an absolute fortune in monthly payments...hundreds of pounds, for very little return if we needed it.

I am going to talk about the financial implications that cancer has on not only us, but I expect other cancer patients too. I want to talk about this because I don't think people give the financial side of cancer much thought, unless you are directly affected by it.
Peoples immediate thoughts when someone has cancer is usually, 'Christ, when is he going to die, how long have they got', 'what are they going to do with the kids', how much are they telling the kids' 'kids shouldn't know, it will be too upsetting' 'He must think positive' , 'will the wife be alright on her own without him' know the sort of stuff...I have thought these things too at other people ! I wonder how many people sit and think ' wow, he is the main bread winner...without his wages coming in to pay the bills, they are pretty fucked'.

So, not only do you have the worry of your husband having cancer and worrying about how long he will live, will he be in pain, what will the treatment be like and what treatment will he have, is it contained, has it spread, then worry about the children and how they will cope, should we tell them all of it, should we keep some back, should we not tell them at all, you get the gist...Ady then has the worry that he wont be able to provide for his family and that he is somehow letting us all down ...the main wage earner, suddenly isn't earning anything.

I have to make sure the children are OK and that their suffering is limited to a minimum, and I have to support Ady through his illness and I also have the worry of how I am going to put food on the table, keep the children clothed and the bills paid.

People have said to me 'That's ok, you can just go on benefits' 'Charlotte had better get a paper round' (she was 11 then). 'You will be amazed at how much you can get in benefits' they say, 'I know so and so who is raking it in' ...'such and such pays no rent AND has a flat screen TV and they are on benefits'.

When Ady had his colon cancer, I made a claim for benefits which I did over the phone. It took about 45 minutes and the lady was very nice and helpful.
Because we are self employed, I had to produce 6 months of accounts, and give an estimate of the next 6 months earnings. Within a few weeks, we were paid £65.45 into our account each week...yes that’s right, £65.45.
This was for the first 13 weeks. After that, they wanted to interview Ady to see if he was fit enough for work. This is a man who had just come out of hospital after having had major abdominal surgery.
We spoke to the surgeon who wrote a letter to the benefits people and said he is in no way fit for work and wont be for a while. They then upped his benefit to £120 a week and placed him in the ‘support group’
Along side this, I made a claim to our local council for council tax benefit. Again, I had to produce a set of accounts, and they said we didn’t have to pay council tax.
I had to contact the tax credit people to tell them of the change in circumstances.
We lost all of our working tax credit and just received child tax credit.
Now we were not getting the working part of the tax credit, we could apply for free school meals, which we got.

So, we went from earning a nice living and having a comfortable life, able to do a weekly shop at Sainsburys without worrying too much about prices, clothes when we needed, bills paid on time etc, you know, all the things one takes for granted, to living on about £550.00 benefit money a month, plus my small earnings of a few hundred.

I calculated that we, a family of four, were managing on about £900. Per month. Out of that money, I have to feed us all, pay the mortgage, heating, water, phones, food, clothes, loans...the list goes on.

We were going to pay off our mortgage in 4 years, but I have had to lengthen the term to another 25 years so we can afford the monthly payments and we don’t lose our house.

I am now getting up early on a Saturday to go to the market where I buy all our fruit, veg, meat and bread for the week. I plan our meals down to the last slice of bread and we are managing on about £50- £60 per week on food for all of us. Thank God I did my catering exams years ago and know how to cook from scratch !

We cant get housing benefit, because we own our own home, but can get the interest paid on the mortgage after 13 weeks I think.

I understand that if I work over 24 hours a week, then we get sweet FA.No benefits at all.

Now Ady has his new diagnosis, we have to go through the whole lot again.
I phoned the benefits people up and they told me that we are still in the system so they had to send a form for us to fill in. We can possibly do what they call a ‘rapid reclaim’. You can do this if you are reclaiming within 6 months of your last claim, which we are.
The form is 52 pages long....that’s right, fifty two !
Anyway, I have done it, and hope they do do a rapid reclaim and put Ady straight back on the support bit without pissing about with interviews (scuse the pun).
I have told them there is no change in our financials and hours of work, but no doubt they will want 6 months of accounts again !

I have the 31 page council tax form to fill out, plus the form they will give me for self employed people when I see them.
Then I have to sit on the phone for hours telling the tax credit people all about it, and also the free school meals people.
All the while Ady is in hospital recovering from surgery and I am on my own with the kids.

This is the way it is when you have cancer and need to live on benefits.

I went to Primark last Sunday and bought slippers and hot water bottles for the winter, because we wont have the heating on very much, just enough to take the chill off, but we are lucky, we have an open fire in the sitting room where we can keep warm and dry the washing.
Macmillan are there if I need a new washing machine, cooker or fridge...they have a fund especially for these types of things, thank fully.

People tend to think about the medical side of cancer, they don’t really give much thought to the day to day living and financial side...why would you, I never did until it now.

This is not a plea for donations AT ALL.
I want to be truthful in this blog about ALL aspects of cancer. The worrying, the waiting, the ups and downs.
The financial side is a big part of it and not something that is publicised or talked about very much, I don’t think.
We will get through, cos I will make sure we do J

Saturday, 10 September 2011

Bits and Pieces

I am a bit embarrassed to mention this, but Ady loves model railways, so much so, that he has a whole railway thing going on in the loft. His cousin, a friend and one of our neighbours are also into them. Thankfully,they're not train spotters and none of them own a note pad, pen, or mac !!
Every year, there is some model railway exhibition at Lemington Spa. Ady's cousin has come to stay at ours for a couple of nights, and they all went off on their day out....sad gits !!

That left me at home with the girls. Both girls had arranged to meet friends in town, so I decided it was a good opportunity to crack on with some house work and get the washing up to date.
I find house work a complete waste of time tbh, I hate doing it, but love it when it is done. For those of you who do bother with house work, you know how you get stuck in and you find yourself lost in your own thoughts, and just thinking about 'stuff', well that happened to me today, and I got thinking about all the stuff that has been going on recently, and all the little bits I want to blog about but haven't yet....

It's interesting how different people react when cancer directly affects them. For me personally, it is as if it is happening to a lady called Emma who is living a parallel life to me. She has a husband called Ady who has been diagnosed with two different cancers within a year and two children called Charlotte and Stephanie. Sometimes, when I read her blog, I think, bloody hell, poor cow, and at others, I smile and think , she's got a funny sense of humor, but I always realise in the end, that this is ME typing this, and I am Emma, with Ady, Charlotte and Stephanie...

I like living in my parallel world, and I live in it as much as I can, but sometimes, I get jolted back into reality.

I remember when Ady was diagnosed with colon cancer, and I phoned Macmillan up because I didn't know what else to do, or who to talk to and where to get advice.
They were absolutely brilliant ! They were kind and understanding. They listened to me and let me cry on the phone to them. They totally 'got it' and sent me lots of booklets to read through. I said to the man I was speaking to (he sounded rather handsome), that I was sorry, but I couldn't afford a donation, but as soon as we were back on track, I would, as I have always supported them.  He  said to me that he didn't want a donation at all, and that this time, I needed them, and they were there for me, thanks to other peoples donations. The realisation that I needed them and they didn't need me was a bit of a jolt into reality !

I have a lovely friend called Sally whom I have known for years. Steph was a very poorly baby and Sally used to come around every Wednesday afternoon (without my asking, she just 'knew')  to help me with Steph. Sally doesn't realise how much she helped me back then. Just to have someone else to hold and comfort Steph while I had a break was a Godsend.
Sally heard about Ady and promptly contacted me.There is a place in our town called The Pickering Centre. It is a little known charity for cancer patients and their families and Sally happens to volunteer there on a Friday afternoon. She gave me a leaflet, and suggested that I came along for a cup of tea. Ady and the girls could come too of course.
So a few weeks later, I was shopping in town, and decided to pop along and say hello to Sally. I rang the bell and a lady answered the door. She was lovely...really lovely. Sally was not there, but she invited me in and we had a nice chat about what they do. They could offer all of us pretty much anything we want. Ady could have a massage on his back (which hurts), Steph could have her nails done, Charlotte could have some Reiki and I could have what ever I wanted. All free of charge !!!!
They said that the girls could have counselling if they wanted it...whatever it is, they can offer it or get it sorted. We can pop in for a cup of tea and a chat at any time.
Me being me, immediately started thinking about fundraising for this brilliant charity, and started chatting to the lady about what I could do to help. I was getting quite excited with all the different ideas that were coming into my head and spilling out of my mouth, when she stopped me and said, "No Emma, we are here for you, you are not here for us. Let us worry about fund raising, and you make use of our services"..well, bugger me, there I was, shot back into reality again ! One minute I was there, thinking about how I can help these poor people and their families, and the next, I WAS these poor people and their families !
She did say that I could do some fund raising later on if I so wished....yes I do wish.

Now, for surgery on Wednesday (not long now), I did ask the onco nurse if the surgeon would be good enough to take some pictures of the surgery so I can put them on my blog. She thinks he might be up for that so I must remember to pack the camera in Adys bag. Blimey, can you imagine all the picture opportunities there will be. I hope he takes a pic of the offending prostate in a dish...I spose it's the closest you will get to having someones balls on a plate anyway...

Charlotte and I were chatting the other day about school. She was telling me about her new teachers and that in English, they are doing horror stories and movies. The teacher asked some of them all to name a horror movie they had watched. She went around the class, and they were saying things like Twilight and Holes. She got to Charlotte, and she said News at Ten.....hmm, perhaps teaching her about Saddam Hussein and 9/11 when she was younger was a bit eager on my part.
She also said that she was struggling a bit in IT lessons, and asked me what I did in IT at school. She now thinks I am something out of the Ark, cos I told her they hadn't invented computers then...

When I started this blog, Ady had a look as he was passing and said to me, "What are you going to write if I die?", so I said "well, The End, of course".
We both agreed that it is fine for us to laugh and joke our way through's how we cope, but if they tell Ady that he is going to die, then we wont laugh any more I don't expect.

I really must get on with these bloody benefits. I've nearly finished the 51 page form, luckily, the next one is only 31 pages....

Friday, 9 September 2011

Plans and Preparations

I had a chat with the girls about transport operations for Wednesday, and bless them both, they immediately said "Nooo mummy, you must take daddy to the hospital..he will want you to take him...we can get the bus that day"...bless them both, I wasn't expecting that response and was very touched by their kindness and compassion.
There is no way Ady or I would go trotting off to the hospital for major surgery and leave the girls worrying on their own for over an hour to get to school. Firstly, that would be very cruel to them...Christ, you cant leave two girls alone like that while the mother takes their father for a cancer op, and secondly, I wouldn't be able to trust them not to try and kill one another while we were gone. Each girl in turn would be phoning me with their explanation of who did what to whom and why it isn't their, that would be too stressful, so I came up with a brain wave....
We are all going to take Ady to the hospital for the 7am check in and if me and the girls leave the hospital about 8am, I will have them to school in time.
Steph says that she doesn't mind being late for school as her first two lessons are maths and English, but Charlotte quite likes her drama lessons and would like to be on time. I have told them both that we will be on time as they need educating and stimulating and if they don't go to school and learn stuff, then they are going to be fick !

So, with that sorted and everyone happy, the next item on the list was the pre op assessment.
This was at 1pm yesterday. We arrived at the hospital and Ady wanted to get a ticket for 2 hours..."bugger that I said, they are robbing bastards, charging for hospital parking and making money out of peoples misery, we will only have an hour". Ady argued that we really should get 2 hours, just in case (he always plays things safe, that one), but I won and we just got the hour. "It wont take long" I said
In we went to the ward, let them know we were there, and took our seats. And we sat, and waited, and sat, and waited, and sat, until it was 10 to 2 and I had to go and put another hour on the parking ticket...robbing bastards! Ady did the whole 'told you so' crap that men come out with when they think they are right, and I ignored him, like women do when they know they are wrong and don't like to admit it. Then we were called by the nurse..thank God !

She took some swabs to test for MRSA and then did an ECG, so wired him up to the machine and pressed a few buttons, and when the paper reading came out, the lines looked like there had been an earthquake... "Oh dear" she said, and did another reading which was the same. I thought bloody hell, now he is having a heart attack!. She was fiddling with the machine and said to Ady, "Is that  a mobile phone in your pocket?" Ady said very proudly that it was, but it was switched off. 
I thought, oops, not a heart attack after all, and secretly switched mine off without anyone noticing. She asked me if I had a phone, and I too, proudly said that mine was switched off, so she blamed it on Ady's phone in his pocket. He had to give it to me, and on the next reading, his heart was perfect....well, I didn't want to get into trouble !

Then we went into see another nurse, who went through his medication and what he can take on the morning of surgery and what he cant't. We had to fill out the health questionairre which she went through.
She was rather surprised that with all his ailments, he had only had one operation. She was particularly pleased to see that he doesn't drink or smoke. Ady said "Yeah and look where that has got me...the wife smokes and drinks and hasn't had a days illness, I've never had a fag in my life and I've got the bloody cancer!" The nurse didn't know what to say and me and Ady were chuckling at eachother.

Occasionally, Ady likes to let me know that when we first met, 20 years ago, he was fit and healthy, played lots of football, worked hard and had a head of hair...nearly. Since then, he has had arthritis, diabetes, underactive thyroid, OCD, high blood pressure, gone bald, colon cancer and now prostate cancer. I don't really know what he is getting at......

I really need to find a moment to ring the benefits office....*sigh*