Sunday, 21 August 2011

Nearly call day.

I am a bit stuck with what to write for my first sentence. Ady is in the sitting room watching some 'lets all murder everyone' war film, that he has probably watched a thousand times before, Charlotte is in the shower...again, Steph is singing Adele songs in her room trying to perfect the right sounds, the hamster is rolling around in its ball, getting itself stuck in different places and Ollie the rescue cat is wanting some all normal here,
We have had a lovely weekend, and were invited out to dinner on Saturday evening by our friends. They did invite us for lunch last week, but Ady felt so ill, we couldn't go.
Ady does their gardening for them (so actually they are people he works for but have become our friends) and they are bloody nice people..... They treat Ady really well and we often take the piss out of them about how they are Londeners with far too much money and no clue as to how to live in the countryside.
Over dinner, they were talking about buying a tent so their children could camp in it for a few nights over the weekend in the garden/field by the pool. We told them that we had a tent we would very happily lend wont be as posh as the one they would probably buy, but if they are camping, then they should slum it a bit and get with the real world!.
They took us up on our offer ( which was really nice that we could give THEM something for a change) and so we turned up with the tent.
I opened the bag, and we all placed the tent where they wanted it put up, and then I started putting it up. I put the whole thing up by myself, because they have never put a tent up before and didn't know where to start and every time I asked Ady to help, he stood there saying "I've got cancer ya know, I can't do anything", to which I replied " You're not dead yet, so grab that bloody pole!"..he soon started helping !

Other than that, my sister Camilla popped round this morning for a coffee and chat which was nice, Steph has been swimming with her cousins, and Charlotte has been to Hobby Craft to get more making sticking and glueing things for her horse collection, I have bought and delivered Betty's shopping (my elderly lady I look after) so she is sorted for when I am on holiday next week and Ady has generally pottered with his chickens and compared ailments with the neighbours.

In the car on the way out on Saturday evening, Ady said to the girls "Girls, careful what you say, cos your mother's gonna blog it"'s been a really peaceful weekend !

OOh, we have the chief exec from the PCT or wherever phoning tomorrow (I have her number)....hmmm, wonder if it will be Medway or Maidstone......

Saturday, 20 August 2011

More bloody crap !

So, Ady was not much better and so I took him to the doctors (such a lovely man). He tested a urine sample and sent it off to the hospital and during the conversation, Ady mentioned that he had a dry cough. Now, Ady takes Methotrexate for his arthritis ( I think I already mentioned this) and one of the possible side effects of long term use of this drug is lung damage...soooo, Ady is sent off for a chest xray...will this ever bleeding well end I ask myself !
While Ady had gone off to do his urine sample, the GP said to me that he thought that Ady was very down in the dumps and that we should keep an eye on him as he is just getting one blow after another. We agreed that he is usually very strong and hopefully he will bounce back. I really don't know how Ady copes with it all..I am not too sure I would cope as well as he has so far.

The urine sample came back clear and so we are waiting for the chest xray results. I hope to God they are clear. What will we do if they are not?, what will the treatment be?, how will they treat that on top of his cancer?  and so a new worry starts, on top of all the others...
To take the pressure off Ady thinking he was letting his customers down by not working, and him feeling that he should be providing for his family, not lying in bed feeling ill, our GP gave hum a sick note for 2 weeks, to be reviewed until his surgery. Psychologically for Ady, this gave him 'permission' to take it easy, have time off work and gather himself together.
This week,he has been up and around more. When it all gets on top of him, he just goes for a sleep. How he can do that, I will never know...normal people, when they are stressed, cant sleep at all !!

Bobby from PALS had been really busy on our behalf. She really felt for us and our situation and had got my email to the right people. 
I had an email from our MP's secretary to say he had written to the PCT as a matter of urgency and would get back to me with the answer......too late mate, I've got my friend Bobby on the case!!

The next morning, I got up and switched on my computer to check emails and stuff, only to find that I had no flipping internet and no bloody house phone...that's ALL I need !
So I got on the mobile phone to the internet and phone people and they said it was a BT fault and would send a repairy man to fix it, within 3 days....three bloody days !!
They transferred all numbers to my mobile, free of charge. Bobby had told me that a lady from the PCT was going to ring about stress !
The next day, we had been out for the day, and came home to find the phone working YAY, so I tried the internet and it wasn't working...bugger, so I phoned the internetty people to get them to help as I has pushed the reset button on the router thing that had buggered everything up.
So, I am going through with the man on the phone, and clicking various things and typing in numbers when I am told to, and concentrating very hard, when the mobile rings and it is the onco nurse.
Ady answered the mobile phone, and while I was typing and concentrating, I could hear him asking her to ring back in half an hour so she could talk to me. The PCT has asked her to ring us to try and reassure us that Medway would be fine....
The next minute, the bloody home phone went dead and I lost my internetty man who was trying to get me back on line FFS !!
So, I spoke to the onco nurse, who was very nice and she said that our own onco nurse really felt for us and wanted to see if we would like the pre op talk thing at Pembury instead of Maidstone as it was easier for travelling. This is booked for 7th Sept at Maidstone,which Ady wanted to keep as it is with 'his ' team who will be looking after him during and after surgery.
While on the phone to the Onco nurse, there was a massage left by a chief executive lady from somewhere up high ( I cant remember where, but I have her number!) who was lovely.
She said that the nurses, lady from customer services at the PCT (who handles the complaints) and Bobby, all really felt sorry for our situation and was doing everything they could to make it better. This lady is in a position to change things !
The up shot of the whole thing is that the PCT and cancer commission have decided that all uro surgery will happen at Medway from 1st Sept, the lady upon high has said that there has been a lack of communication and that it is happening from 1st October, and that she is doing her best to get Ady's operation to happen at Maidstone in September.
I don't care whether there is mis communication, or they are back tracking because they know I am kicking up a long as the op happens at Maidstone where he is closer to home and we can visit easily and the team who have been looking after him all along will be there, we don't actually care !
The lady is going to ring me on Monday to let me know where the op will be and whether I have to take this further....we will see !

If you are bored of reading this, then you want to try living it, It is so much more exciting, you get to meet new people, make new friends and learn lots about life.

A friend of mine said to me a while back, that our phone book would change over night, and over time, that has happened.
Some people have shown true kindness, while others have run for the hills. Some surprising, and some not so.
My friend Mary made the effort to drive for three hours down the motorway to come  and take me and the girls out for the day. She had not met the girls before, and we had only met a few times previously, but we chat a lot over the internet and on the phone.
She came early in the morning,and we jumped in the car,and headed in the direction of the coast. We were going rock pooling and google said that Saltdean was the place to go. So we headed in that direction, not really knowing where we were going, with no map, just road signs for help. Anyway, to cut a long story short, we ended up in Rottingdean, which was far from rotting !...we never did see a sign for Saltdean...On the way, we pulled up at the forest and stopped at the ice cream van. Not bothering to get out of the car, we pretended we were on a drive thu, wound down the window, ordered our ice creams and drove off with the girls giggling in the back and the ice cream lady thinking we were completely mad ! Me and Mary were having a great time being so childish !
We had the most lovely fish and chips in the local pub, cooked by a very nice man from Africa, and the village was very pretty indeed. We paddled in the sea and ate more ice cream and fizzy drink.
On the way home, even though we were stuffed, we stopped off at a different place in the forest and had a cream god, we stuck out like a sore thumb, looking a complete mess with our buckets and spades, smearing cream all over our scones and loudly sipping coffee and tea, with the girls slurping their milkshakes through straws, while old posh people were trying to have a pleasant afternoon....we didn't stay long !
I had another friend who has fallen out with Mary and I had written on Face Book that I was going out with her  for the day. Later that evening, I noticed that she had deleted and blocked me. I wont type here what I think of that. For once,I will keep my thoughts to myself as I have other things to be thinking and worrying about.
Thank you Mary, for giving us a really lovely 'cancer thinking free' day

MPs, PCTs and PALS

We arrived at Kathy and Roy's  to pick the girls up. We had already phoned them for the hospital and told them our news, and they were delighted. The girls had big beaming faces as not only had they had a nice day out with no expense spared, they also knew Ady's cancer was, as far as they could tell, contained.
We all talked about Medway and Maidstone and tried to work out what made someone think this was a good idea...where was the logic.
I said that if it had to be Medway, then the girls would have to have a week off school and I would have to take a week off work as it would be simply too stressful for me to try and fit it all in.
My week would consist of leaving the house at 7.30, dropping the girls to school, bathing my two elderly people, home by 10, sort stuff in the house, back out to do dinner lady duty at 11.15, do Brian's lunch, home at 2.30, pick the girls up at 3.15, over to Medway and arrive about 4.45, visit Ady, feed the kids at the restaurant there (what else can I do) and we would probably get home about 9 in the evening. I'm not sure when I will do Brian's evening visit.
Charlotte, however thinks that Medway would be a great idea, because she gets a week off school !! Steph, on the other hand, is horrified at the thought as she will be busy forming new friendships and settling in.

We thanked Kathy and Roy lots and lots, and went home. When we got there, Ady said that he felt like he had been hit by a baseball bat all over his body, and someone has suddenly pulled a plug and drained all his energy away. So he went upstairs for a lie down, and sleep.
Steph went off to sing some more songs (she is always singing, that girl!) and Charlotte went to her room to finish making head collars and rugs for her schleich collection.
I googled who our MP was (me and google are getting very close now) and started writing him a letter by email.
I spoke to our GP who hadn't heard about it but suggested I got onto the PCT, so I phoned them and they were a bit stuffy and passed me from pillar to post...that pissed me off, cos I was very polite and even put on a posh voice !!
So I phoned Medway PALS, who were busy but would get back to me withing 24 hours.....well that's too bloody long when you are on a mission, so I phoned Medway PALS and found myself a new friend called Bobby. She listened to all I had to say, all our concerns, confusion and anger, and said she would help us and do some digging.
She phoned back the next day to say she thought she had found the right person to speak to about this and suggested that I email her a letter with our concerns/complaint in bullet point fashion.
The girls were doing their own thing, and I set to my email. I was just organising in my brain, the correct words and the latest buzz words like continuity of care, patients charter, patients choice etc and there was a knock at the door. It was our friends Jackie and Robin with about half a dozen kids, turned up for a cup of tea as they were passing by.
I made them all drinks and sat Robin (he is a headmaster) at the computer and set him to work on my email. He did a great job, with correct spellings, punctuation and grammar (he has clearly had nothing to do with this blog then, I hear you say !!) and it gave me a good starting point to get the email done.
They haven't been back for coffee since...although they did say about going to theirs for a Chinese sometime.

Our MP was away for a few days and his secretary said he would get back to me in a few days and she would mark it as urgent. Maidstone PALS also rang back and said they would pass me onto Medway PALS and I had done the right thing by ringing Medway.
So all I could do now, was wait for people to get back to me.
Ady was still in bed, feeling very unwell, and coming downstairs occasionally to tell me how ill he felt and how worried he was that he couldn't work, and how worried he was about going to Medway. He wondered if he had a bug, and I wondered if everything is tumbling down around him and he is finally collapsing in a heap.
There is only so much one person can take,and I do think that two cancer diagnosis' within a year, is quite enough for anyone !!

I rang our GP and spoke to him about Ady as I was a bit worried about him, and didn't want him to be on a complete downer with the forthcoming operation, wherever it may be !!
Our GP ( this guy is brilliant, he has so much time for us, is completely understanding and does all he can to help) said to let Ady have some time on his own in bed with his own thoughts and if he is no better next week, then to bring him in to the surgery.

I had been invited to Faye's 50th birthday party at the weekend. I had planned to travel to Somerset on the Saturday, get rat arsed and come back on the Sunday. This had been planned for a few months and I was really looking forward to it.
As the weekend drew closer, Ady was getting a little bit better, but not much and although I really wanted to go to the party, I wasn't too sure that I should. I spoke to Faye and Mary, and we agreed that I would leave it until the last minute to decide if it was a good idea or not.
Saturday came, and Ady said that I could go if I wanted to, and that he would be OK. He said  that I may as well go as it will probably be the last time I can go away like this for a while and he didn't want me to hold it against him in the future. Well, by him saying this, I knew that he didn't really want me to go. I left it for an hour or so, and then said that I had decided that I was not going. It was not the right time and Ady and the girls needed me at home. I couldn't leave him to look after the girls in that state on his own.
I had made the right decision, as Ady looked very relieved and relaxed a bit. Charlotte said quietly to me later that she was glad I wasn't going as she would have felt that she had to be 'mum' and look after things.
Christ, that is NOT what I want for my children.
I am really really proud of them and the way they are handling this whole sorry situation.
We all talk very openly about our cancer, they ask all sorts of questions when they need. They cry and we all cry together and they laugh and we all laugh together.
This is not just Ady's cancer alone, it is our cancer, we are ALL affected by it, we are a family and we do things together.

Friday, 19 August 2011

The Real Results.

So, here we are, results day. The day we have been wishing and wanting to come for weeks, but also the day we didn't ever want to come either.
The girls are on school holidays. Steph is REALLY pleased to have left primary school and Charlotte had survived her first year of secondary school.
As the girls knew from last year when the colonoscopy man didn't give away too much information because they were there, they completely understand that we need to go to consultants visits on our own. We asked who they would like to look after them, and they both said Kathy and Roy !!. Kathy and Roy are our very good friends who act as adopted grandparents to the girls. They were only too delighted to have them, and promptly arranged to take them out for a pizza. We are really lucky to have them in our lives !!...Bloody nice people they are !!

We had been told that the operation would take place at Maidstone Hospital, the center of excellence for oncology no less. This hospital is a good 40 minute drive for us, but we completely understood that that is where our surgeon is based and so that is where it will be. We had accepted this and I had pre planned in the back of my mind about how we were going to visit, when we were going to visit, who else was most likely to visit and so on.

We had convinced ourselves that there must be some kind of spread and that there is no way Ady could get away with this twice, and from the very beginning, Ady had said a lot, that he had a bad feeling about this one.

We walked into the consultants room and sat down. He looked at us and smiled and said "Well, everything seems to be fine and you are OK for the operation. There doesn't seem to be any spread, so it is contained"
We just looked at him, trying to take in what he had said. We both must have had very blank expressions on our faces, because he then said " Do you want to go back out and come in and we can start again? Usually people at least smile with that news!"
Ady and I looked at eachother, and I said "Well, I had better cancel the vicar then" and he replied " Bloody hell, what are you going to do with all those sandwiches!!"
The atmosphere went from a very tense one, to relief and laughter.

The consultant said that he was very cynical  and that nothing surprised him, although the biopsy report said cancer on the left and none on the right, he fully expected there to be cancer on the right as well. He said he wanted to operate sooner rather than later. ( I have since read the biopsy report myself and Mr Google tells me that Perineural Invasion indicates that spread is about to happen, or has happened. This was also confirmed by a uro nurse today)

We spoke about the operation and the whats, whys and wherefores, and then we asked when would it likely happen.

The consultant then said "Ah, yes, well, there has been a change of plan. The operation is going to be at Medway"

I couldn't believe my ears......."Medway?" I said..."Bloody MEDWAY???!....why Medway?, why not Maidstone??
Ady sat there in shock, and said "Where the bloody hell is Medway...that sounds like Indian country to me"

"I will tell you where Medway is" I said.." Its over a bloody hours drive away, thats where it is, up the A fucking 2!!"

The consultant said he was none too happy about it either and that he had to go to Medway to do the operation and then come back to Maidstone because that is what the PCT, or someone, has decided. They want all uro surgery under on roof and the change was to happen from 1st September.

I could see Ady was completely deflated, looked totally washed out and was very worried.
Well, that was it, I was furious, that somebody could sit there and decide that they wanted everything under one roof, to keep up the 'Improving Patient Outcomes' guidelines with no thought for the patient. By taking away what the hospitals can offer, they are taking away patient choice.
This affected us in a massive way.
This meant an over an hours drive each way and a 60 mile round trip. and not a nice drive at that. The girls would be at school, so we wouldn't get there until about 5ish and goodness what the time will be when we get home...what about tea, and homework??
What about Ady? he would feel very isolated being what he feels is so far away. No one would bother to visit him, they would just wait until he came home, and then drink all my tea and coffee !!
For the week he would be there, it would be at least 300 miles and 15 hours driving.

"Right" I said, "How very dare they". I made quite sure that the consultant was happy to treat him at Maidstone and that all necessary equipment was there. The consultant smiled and probably thought to himself, she's a feisty little cow, I wouldn't want to mess with her.....he would be right to think that and so off we went home, to fight the next battle.

The MRI Scan.

So, 11th July came and went and the bone scan was done. We had to wait until 29th July to have the MRI scan which was 6 weeks after the biopsy and 8 weeks since the PSA test at the doctors. We didn't get any of these results until 9th August. That is TWO months of tests and waiting until you find out what is REALLY going on and EIGHT weeks of knowing that the consultant was not very happy with the size of the prostate in relation to the PSA number so had ordered scans...that's a lot of waiting and worrying, thinking of the worst, thinking of the best and is also a lot of listening about other peoples great aunts cancer stories and their survival, consoling other people who are very upset at the news, peoples opinions about how we are reacting and how we are dealing with the children, and people saying about their grandfathers prostate cancer that was 'fine'.
At this point, I forgot to say this earlier when I was going on about Gleason scores and stuff, generally speaking, as you get older, the less aggressive the cancer generally is, and the less likely it is going to kill older, I mean 70's and 80's, not 40's, 50's and 60's. If you are younger, it is usually more aggressive. This is broadly speaking of course and just what I am sussing though my good friend Mr Google !

We decided that waiting for the bone scan results was just TOO much, and as I noticed on the wall of the bone scan place that results would be with the consultant in ten days, I thought, stuff this, and asked our GP how we could go about finding out the results. He said that we could phone the consultant to which I replied " You must be joking, I am scared of him !", so our lovely GP said not to worry, cos he wasn't, and so he would get them and ring us ...PHEW !!!
A week later, he phoned to say that the bone scan was clear...did you read that? that's right CLEAR I tell you !!!!!! We were very very happy...I would put a few more verys in there, but that's just childish !!

So, back to the MRI scan. We knew it wasn't in his bones, but didn't know if it had spread outside the prostate, but the bones bit was a relief.
Now, some people find MRI scans quite scary and claustrophobic, whereas Ady was quite looking forward to it...his arse was safe, no needles or nuclear waste, just magnets this time.
Ady can sleep anywhere, at any time (which irritates me actually) and he can even sleep in the dentist chair having root canal treatment, whereas I am on the edge of my seat, dripping with sweat, the moment they ask me to open my mouth for a check up !!
He said that the bed was a bit hard, and he would have slept but they kept waking him saying "keep still, keep very very still, just 3 minutes this one", and then a load of whirring, clunking and knocking....Ady would drift off again and then " Just one and a half minutes, keep very very still...very very still", he thought, I am keeping bloody still, how still do you want me to be !!, and about half an hour of keeping very very still, very still, it was over.
We decided to make the most of the evening and so we went out for dinner at the Harvester. I like the Harvester cos you can eat lots of salad to make yourself feel all healthy before you stuff your face with a huge platter of grease.....we had a nice time anyway.

11 days to go for the real results !!

Bones and scans

Ady was relieved to be told that none of these tests had anything to do with his arse, well, only in an indirect way...
The first scan to happen was the bone scan on 11th July. We had to travel to the hospital for 10.30 and report to the Nuclear dept, hmmm. That sounded pretty ominous but nevertheless, we duly arrived.
The nurse then injected some nuclear stuff into his arm and told us to go off and come back at 1.30 ready for the scan. This allowed the , what I assume was nuclear material, to travel around his body and attach itself to any dodgy bony bits and that would show up in the scan as dark spots, or ‘hot spots’. So off we went and settled down in the hospital cafe.
There is only so much you can do in a hospital and talk about in 3 hours, so my mind started wandering onto the house and all the plans I had had for downstairs the year previously.
I then thought to myself, feck it, we should get downstairs done before we are in such dire straits that we won’t be able to afford to do it for another year or so, and if he needs further treatment, then it will be even longer!
I told Ady my thoughts, pretended I was listening to his protests and promptly shot out of the door to the smoking area and phoned Andy, who was only too happy to oblige !!
So that was that, a date was set for work to begin and all I had to do was pick the flooring and paint. I REALLY wanted a new fridge freezer with a drinks dispenser on the front and a new cooker and hob, but, as they are both still in working order, just very old, they will have to wait until they blow up I spose.
Ady is one of those people who is simply not materialistic, and as long as he has a chair to sit in and dinner on the table, he couldn’t care less what the colour scheme is (well, apart from the day I painted the dining room walls and he complained that it looked like calf shit), so although he didn’t see the point in new flooring and a coat of paint, he let me get on with it.
The whole house is looking great now and suitable for visitors, doctors and district nurses if and when we need.
Time was ticking on, and it so we wandered back to where the scan thingy is.
The nuclear dept, MRI and oncology dept is all in the same place. The waiting room is big, and full of comfy chairs, pot plants and a big TV with BBC news24  playing all day. There is also a lovely outside bit with more plants and benches..oh, and a fish pond.
As we were a little early for the scan, we thought we would sit outside in the sun. I noticed a sign saying Macmillan this way, so I wandered off and got myself a load of booklets on prostate cancer, all different stages, financial help and a how to talk to people with cancer booklet .
I came back to where we were sitting and looked around at all the people sitting and waiting.
Some people were waiting to see a consultant, some people were having tests and some people were waiting for their chemo drugs. People were at different stages of their disease. Some were at the beginning of treatment and some were at the end. I couldn’t help but wonder what cancer the lady in the pink skirt had, and how the man in the yellow top was. As I looked around, I thought, there but for the grace of God, go I.
 There was a very calm atmosphere, it was very surreal. They all had one thing in common and that was that they had cancer, or they were accompanying a loved one with cancer. Something that always happens to someone else, not us. And then it hit me, that it wasn’t someone else now, it was actually happening to us !!! My husband HAS cancer and I am sat here with him, waiting for a bone scan to see if his cancer has spread to his bones, making him stage 4...there is no stage 5...fucking hell !!!

The scan itself took about 20 minutes and we were back home in time to pick the girls up from school.
I will write about the MRI scan in the next blog because I am a bit stuck thinking about the people in oncology that day. I wonder how many were told that treatment is working, and I also wonder how many were told that there is nothing more that can be done. How does a consultant tell someone that? How does that person feel? What is that person thinking? How do they deal with it?

I think it is only when you have to ride on this cancer bus, that you really give cancer any sort of deep thought. It is only then, that you realise that they didn’t just pop to the doctors and the doctor said “Oh dear, you have cancer”...the person would have had symptoms and gone to the GP. The GP would have done basic tests for infections and such like. The person would have gone back to the GP as they are no better..this could go on for weeks, until more tests are done, and then waiting to see consultants, and more tests and more waiting and worrying, and THEN the final blow of a cancer diagnosis.
So, here’s a tip. The next time someone tells you they have cancer, spare a thought of the agony they have been through to get to that diagnosis. The worry, waiting, hospital visits, and tests that have gone on for weeks, possibly months before they get to tell you. And then the worry of what treatment they will have, can they have treatment, how horrible is it going to be, how are they going to manage, will they die, what is dying like, has the cancer spread, is it spreading now, will it be painful, how will their loved ones cope, who is going to look after them...the list is endless and they are daily worries that go around and around in that persons is all consuming. Cancer has come into that person and that family’s life, completely uninvited....

Wednesday, 17 August 2011

The Results.

Before I get to the actual results, I think I need to explain the finer points of Gleason scores and staging systems...the finer points being what I understand them to be anyway !

I assume somebody called either Mr Gleason or Dr Gleason made these up which is why it is called a Gleason score...I haven't a clue and am guessing but will put it on my list of things to ask the consultant the next time we see him.
I think the Gleason scores only relate to prostate cancer cells..I assume there are different scores for different cancers made up by different people with different names..I dunno. I might ask that too.

Anyway, there are 5 different pattern types of cancer from nos.1 through to 5. Number 1 being the least aggressive and number 5 being the most.
When they take the samples from the prostate (cores), they generally take about 12.
The prostate,for those who dont know is a walnut shaped thingy just below the bladder and around the urethra which makes the white stuff that produces sperm among other things and is also something to do with contractions during orgasms.

All the cores are looked at and all the cancers found are assigned a pattern number according to the picture of patterns. The most cancers cells with that pattern are given a number and then the next most are given a second number, and those two numbers are then added together to give the gleason score.
For instance 3+3 is a gleason of 6 and 3=4=7 and 4+3=7...when you have a gleason of 7, the numbers making that 7 make a difference. A 3+4 is less aggressive than a 4+3 because the first number is the most cancer cells present......geddit?, nah, me neither !...I do really, I am just trying to make you feel better !

Then we have the staging system which is T, N and M
T means the tumour size and how big or small it is. T1 means that it is very small and still encapsulated T2 means it is a bit bigger but still not broken through, T3 means it has broken through and is on the move and T4 means its on the run.
N stands for either get No which means your lymph nodes are OK and not diseased or you get N1 which means its spread to your nodes.
Then you have M which stands for metastisized....either Mo which means no spread or M1 which means its spread to other parts of your body. When you are in the cancer club, you get to call the M bit, mets.

So, Ady had pissed himself, been to the doctors, been to the urologist, been shot up the arse with the biopsy gun and now we were back off of the consultant for the results..

The drive from our house to the hospital is about 45 minutes. Normally we have lots to talk about and generally chatter away, but today, we were lost in our own thoughts and the drive was done in pretty much silence. The girls were at school, well one was at school and the other was on an end of year school trip. She had asked us to let her know the results while she was away via the headmaster ( we are friends and have mobile numbers and he knew what was going on), so we agreed we would do that.
As the town the hospital was in was getting nearer, there was a bloody great storm brewing there...I said to Ady "bloody hell, it feels like we are driving into the lions den"...he agreed and said "yeah the weather does look a bit shit, have you brought a coat?"..we both knew that of course I hadn't !

Jumping forward to the consultants office cos I am bored of typing irrelevant shite about the weather and anyway, we really weren't looking forward to seeing the consultant again cos he was SOOO rude the first time we met him !
Oh no, hang on, lets go back to the waiting room. I will never forget when we were sitting in the waiting room, well hospital corridor actually, waiting to to see the consultant and a couple came out of his office and sat down opposite us. The poor man looked like he had been hit by a bus, just staring into space with the biggest look of shock and worry and his wife sat next to him trying to give him words of comfort, which you could see he just wasn't registering.
I remember feeling desperately sorry for them. I wanted to go over and ask if there was anything I could do, But then the oncology nurse called them and we were called into the consultants room and I was immediately shot back into the realization that we are now walking into the place that man and his wife have just come from......

Mr R ( the consultant) was MUCH more pleasant this time, in fact, he even smiled and he was a bit taller and younger than I remembered him from the month before.
As he we were all walking into the room, he said " well, there is a little bit of cancer there"...even though google has told you that this will be the case, it makes it no better being told it by the man who knows!!

We sat down and started talking about it and Mr R advised Ady to have surgery to remove the prostate. He then started rummaging through Ady's notes and said "Have you had any scans yet?"..."No" we said, "Oh well you need to have some because I dont like the number on your PSA test in relation to your small prostate"
I asked the gleason score and we were told it is a Gleason 7 (3+4).
So the diagnosis so far is
Prostate cancer
Gleason 7 (3+4)
PSA 24.5 (27 was the immediate number but on closer inspection is was moved down)

He said that this had been growing all the time he had colon cancer and possibly before and lets see what the scans say.

Off we went, back into the waiting room/corridor, to wait for the oncology nurse to call us, just like the couple before us.

Heather ( the onco nurse) was very nice and she booked Ady in for a bone scan within the next two weeks, but explained that he would have to wait for the MRI on the prostate area and pelvis until the end of July because they need to wait for the prostate to settle and stop bleeding so they can get a clear picture and this will take about 6-8 weeks from the biopsy.

She told us that the biopsy report said that the cancer was on the left of the prostate and that of the 12 cores taken, 5 on the left were positive for cancer. At this point, I need to say that taking biopsies it similar to a game of battle either get a hit, or you miss. If you miss, it doesn't mean that cancer is not there, it just means they missed the spot.

Our cancer bus ride has come to another stop where we have to wait, and wonder,and worry, and wait, and google,and think of the worst, and think of the best, look after the girls, go to work, worry,wait, wonder, hope..........

We didn't want to ruin Stephs holiday but we also didn't want to lie and we promised we would tell her, so we decided along with consultation with Charlotte, that we would tell her that they thought there might be a bit of cancer but daddy needed more tests and that she should enjoy her holiday as we didnt really know anything.
The headmaster knew everything and was extra nice to her for the rest of the week.
When she came home, we told her everything and explained our reasons for not letting on too much and she completely understood and thanked us. She also said "I wondered why Mr D was being so nice to me"  haha

I must talk about Brian sometime...he is great and cheers my day up !!

Tuesday, 16 August 2011

Google, Biopsies and Urologists.

All over the weekend, I googled and googled and googled, so much so that all the links had gone purple instead of blue...there were no more links left to click on !!
I didn't like what I was reading at all, so I phoned my friend Dubs to see if she was reading the same as me...bugger it all, she was.
We decided that if one had the choice between colon cancer and prostate cancer, one would choose colon because it is curable, prostate cancer not so...but those who didn't know much about it, would probably chose prostate because it is thought of as an old mans disease and something you tend to die with and not of..I wonder what the men who die every hour would think of that...that is one man every hour who dies OF prostate cancer and not WITH it...
My husband is 51 now...that's not old !!

We had a call from the hospital to say Ady's appointment with the Urologist was on the Thursday, so that was within a week of the PSA test...not bad going !
Oh yes, our GP had had a twiddle up Adys arse and couldn't find anything wrong.

Off we go to the hospital and after a bit of waiting around, we were shown into the consultants room where Ady was asked to remove his bottom half and lay on the bed. I sat on the chair the other side of the curtain.

A minute or so later, a stubby man walked in without saying a word, took some gloves out of the box on the wall and as he was walking behind the curtain, confirmed Adys name and promptly shoved his finger up his arse with no warning !!, rummaged around a bit and walked out. On his way out of the door, he said something about biopsies. Ady asked if he thought there was anything wrong and he just shouted 'NO' from the room next door.
Well feck my old boots, he certainly isn't  like our lovely Mr B and his colon team that's for sure !!

We were so horrified at his treatment that we complained to the nurses. They were quite embarrassed about it and took us into another room to explain the proceedings.

A biopsy was arranged for the next Thursday, so we went to collect the antibiotics to take for during and after the procedure.

Ady said that he had been through enough over the last year and really didn't need this treatment and could I see if we could change consultants *sigh*
I phoned our GP and told him what had happened and he said that try and keep with him until diagnosis and if Ady still isn't happy then we can change.

Right, so, off we went for the biopsies...this time, they were shoving a big rod thing up his arse. (Dubs says that Ady has had more anal action that a gay man could dream of and that next time I ought to send him in with a porn mag so he can at least get some pleasure out of the experience).

Ady didn't like the biopsies and by the time they had got to the last 3 , he was going to ask them to stop before he was sick. He said the noise reminded him of when a farmer ear tags cattle, the difference being that they had a gun thing up his arse with a needle saying 'left a bit' and then 'bang' 'right a, down' and then 'bang' and taking pieces of his prostate for examination.

Christ, I am glad I am a woman !!!!!

Piddle problems and the PSA test

April and the beginning of May were great. Ady was feeling really well and was back to work. He was enjoying the sunshine. Charlotte was enjoying school and had really settled well with lots of friends and Steph was looking forward to leaving primary school and moving on. I was also into a good routine with my work and was getting the finances in order, finally.
Ady came home from work one day and said that he would be working one minute and the next he would think 'Oh Christ...PISS, I need a PISS' and sprint for the loo. We put it down to perhaps it was the surgery and everything settling down. he spoke to his GP and he agreed.
So the next week, he came home with wet clothes and very annoyed that he hadn't managed to get to the loo in time and had pissed himself...luckily, our Ady does like to carry a spare wardrobe of clothes around with him in the car, so he was able to change.
He went and saw our lovely GP who is young, with it and happening with all the latest stuff who sent him off for a PSA test (Prostate Specific Antigen).
We weren't bothered about it, nor knew what it meant...we were happy he had had his tumor marker and was 'cancer free'.
The blood test was on the Thursday and on the Friday morning 3rd June, our GP phoned Ady to ask what he was doing that day and could he come in at the end of afternoon surgery to see him...there is something not quite right with your blood, he said...Oh,and Emma can come too if you like....hmmmmmm

Off to the doctors we went, and he explained about PSA tests and asked if we knew anything about the prostate...I knew it is the mans 'oohh la la ' bit, but I didn't like to embarrass them, so I kept quiet.

He explained that Ady's levels should read about 2 and the hospital had faxed Adys through at an immediate reading of 27 !!
So, things were put into place and Ady was to see a urologist within two weeks.
Having been here before, we knew that the two week bit meant he suspected cancer..FFS, so we talked about that and our lovely GP seemed very upset for Ady and shook his hand and patted him on the back saying ring the surgery and let me know what they say.
We went back home a bit stunned, but decided not to say too much to the children at this point, just in case he doesn't have cancer...again...we didn't want to worry them.

Google is my friend ...

Our thoughts as a family on the colon cancer journey.

I was standing in the kitchen one day thinking to myself about the past few months. One thing Ady and I were really concerned about was that our children would come out of this as unscathed as possible. So I called them to the kitchen and asked them, now it was all over (or so we thought), how did they think Ady and I handled the whole thing.
One thing that sometimes bothered me, but only because of other peoples opinions, was whether we were giving too much information, and telling the girls too much.
Both of the girls reassured me that they were very happy with what they were told, and they were happy with more explanation when they didn't understand the medical side. They both said that they would have HATED being kept in the dark about any aspect of it and that would have worried them. They would have felt like it was a 'them and us' situation with things out of their control. They also said they would not have felt like a family fighting together.
I am SO glad that we approached the whole thing with candor and so were the girls !

The one thing they said that they didn't like, was our joking about his possible demise. That is completely understandable and although we explained that it was our way of coping with it, we will not joke in front of the children again...a lesson learnt there I think.

The thing that Ady found REALLY frustrating and annoying was the amount of people who told him to be positive. He found that if he told someone he was going to fight it, but he was scared of the operation and what was to come, it somehow meant that he was giving up !!
You can be scared and positive at the same time.
What happens if you are being positive and yet the cancer comes back...does that mean you weren't positive enough?..I wonder what the people who say to be positive think then.

People are very odd creatures ya know. Why cross the street in order to avoid the patient or his wife?
If you don't know what to say, then say " I don't know what to say to you". Saying that means you care, but to avoid someone implies that you don't...such a hurtful thing to do !!!

Once you are on the cancer bus, be it the patient or the patients wife, you very quickly realise that everyone's cancer is different and each body deals with it differently. Two people could have the same cancer, one could die and one could live, or they could both die,or they could both live.
I now switch off and just smile sweetly when someone goes on about their great aunt Maud who had the same cancer and survived 40 years later, thinking that that will make you feel me, it doesn't, but we know they mean well.
I did try telling people I didn't care, but they get quite upset so I am learning diplomacy and tact...Christ that's hard !!!!

The six monthly tumor marker test.

Ady continued to recover brilliantly over the next few months, and by March, he was able to return to work full time, full of strength. You would never have known he had had cancer if you saw him !!
His GP was very pleased with him and said he had done all the right things and followed the medics advice and there is no reason why life shouldn't return to normal.
So, off Ady went, with his boots and hoe and continued with his gardening jobs which everyone had saved for him. He didn't lose one customer over the last six months !!!

April came, and it was time for the tumor marker test to see if cancer is present in his body.
Now,if you are like me, you would automatically think that the blood test is an all encompassing test relating to all cancers, and that if the test is clear, then he is cancer free....this is not so !!! You have to do different tests for different cancers. The test for colon cancer is a CEA test.
Ady had the test done and had to wait a few weeks to see the consultant for the results. His GP thought this a bit unfair to make him wait and so rang him to tell him not to worry, the results had come back, and that he was clear...wasn't that nice of him !!! he's a lovely man, our new GP !

So, life pretty much carried on as normal. The girls went to school, Ady went to work and so did I. The benefits were cancelled and that was that. Ady was best man at his friends wedding in July, and we were all very much looking forward to it. There was a time when Dave and Sue ( the couple getting married) had someone else on standby, in case Ady didn't make it. You've got to plan these things !!!

Things were going so well, that we thought that we had had a crap year and so lets have a small family holiday for a week.
Herm Island was booked for the end of August.

Home, recovering, and waiting

Ady was home and made the most of resting. Lots of people came to visit and some took him out for a drive and to the pub.
He couldn't drive himself for 5 weeks, so I drove him around in the car and he drove me around the twist, but , we managed to get through the next week of waiting until we went for the results of the histology report on the offending colon piece.

We saw lovely Mr B and his team and they gave us to good news that the cancer was contained within the colon wall and that he needed no further treatment and they would give him six monthly checks with either a blood test or scan....bloody hell, what a spot of luck, we thought, and walked out of the hospital a very happy and relieved couple indeed !!

Ady continued to recover very well all through Christmas and into the new year. We were able to enjoy Christmas for two reasons, the first one being that most of the presents the children had and the food we were eating, was paid for from the kindness of my online friends with love to shop vouchers and the second one was that Ady was OK. He had been through an ordeal which was pretty harrowing, life threatening and bloody scary, but he was out the other side all in one piece (minus a bit of colon of course) !

On the hospital ward.

After all the shinannigans  of Thursday night and Friday morning, by Friday late afternoon, some sort of normality was restored and Ady's pain was fully under control...he was as high as a kite, but it was controlled.
Plans were made to move him onto the surgical ward.
Along came the porters and we gathered up his belongings and we left the safety of the ITU with one staff assigned to each patient 24 hours a day, onto a ward with 10 other patients and not as many staff.
When his bed was parked into its space, and his nurse said goodbye, we felt a little bit insecure. All the machinery had been taken away apart from his morphine and catheter bag. The insulin monitor had gone too.

The girls and I hung around for a while and made sure he had settled in, putting his things away in his cupboards, while nurses came and did obs and wandered off.
I had to remind myself that intensive care is a different world to a normal ward and this is they way it has to be, and that was the way it was.

Over the weekend, everything was pretty normal. Ady wasn't allowed to eat anything except ensure drinks. His choices were chocolate, banana, vanilla or strawberry....oohh what to have for breakfast !!!!

Visitors came and went, and so did the ensure drinks.
Ady spent some of his time toddling up and down the ward with his new friends he had made. They walked along with their zimmer frames, catheter bag dangling over the front and open gown at the back, support stockings and slippers on !
He complained to the consultant that his legs were very painful, and pointed to the painful part to which the consultant said " I'm not surprised since you have had your legs in stirrups for four hours" Oh, the embarrassment at that thought !!!
Ady was quite aware that he was by far the youngest on the ward and that the age of his children was the age of the other patients grand children.
In all, a good weekend was had and Ady was recovering well. They even took the morphine away cos he didn't need it anymore.

On Monday morning I had a call form Ady, in floods of tears. He was absolutely beside himself, sobbing and he didn't know why. Anything I said, made no difference, so off I went to the hospital to see him. (Thank the Lord for the mothers dinners they were cooking!).
We sat on his bed and closed the curtain and just cuddled while he cried.
When I left, the consultant was called. They agreed to remove his catheter and let him have a cup of tea and some toast. They told him that once he had done a poo, that was his ticket home and that was all he was waiting for.
At Ady's request, I cancelled his visitors for that day and sent my sister to see him. She checked with me what he wanted to hear and what he didn't and she turned up with a bottle of squash and a good shoulder. Ady was pleased he saw her and Diana hoped the visit had gone well....I think it did!

On the Tuesday, I rang Ady in the morning and he seemed much happier...he told me that he had had a shower with Carlos !!!!!! CARLOS I said, and who the feck is he !!!!! To my relief, Carlos was a nurse who helped him to the shower to freshen up.....Thank God !!

On Wednesday morning, I got a call from Ady to say that he had done a tiny poo, and that was good enough, according to the consultant , to go home...YAY !!!!

The physio came and checked his lungs and made sure he could walk up the stairs and we packed his bags. The nurse gave me instructions on dressing and cleaning his wound, which was stitched from his belly button to his pubic bone and off we went. HOME !!

ITU Pictures

Intensive Care Unit

Ady and I had agreed, at diagnosis, that we would keep the girls informed every step of the way.
They are our children and Ady is their daddy. They have a right to know the ins and outs of each step. We will all fight this together,as a family can't do that if half of them don't know what is going on !!
Both girls knew that they could come to me with any questions or worries, and at times they did and I answered as truthfully as I could.
When they asked if daddy could die, I said yes, because the fact of the matter was that he could, so why lie? I also reassured them that it was unlikely as we had been told there was no spread to his liver and so we would have to be very very unlucky indeed if he croaked it, but we didn't know about lymph nodes and whether the tumor had gone through the bowel wall...we had to wait two weeks for that answer.
But, the upside is that the girls understand what a colon is and what lymph nodes are and how they work around the body....Oh, and I also left Macmillan books strategically lying around the house...

We also agreed that it would be unfair for me to be talking on the phone every evening updating everyone and ignoring the girls, so we decided that I would leave updates on the answerphone and if people wanted to know anything, they just needed to listen to the message. There were one or two people who were not happy with that arrangement, but frankly, too bloody bad...the welfare of our children come first and if they wanted to talk, they knew I would be in during the day when the girls were at school.
Most people didn't mind a jot and thought it a good idea. It saved me having to repeat myself every evening and it also saved them struggling for words of win situation :) the message was updated on every visit I made to the hospital.
I also kept a note of who was visiting and when so there wasn't a queue down the hospital corridor...Ady has 5 brothers and a sister and I have 6 sisters and 2 brothers and what with friends too, it would be quite a queue !

Anyway, day 2 of the hospital and Ady was still in ITU. His lungs seemed to have gone on strike and were not working effectively so the physio was summoned for excersises  and an oxygen mask was administered, along with the rest of the gumph.
The medical team reassured us that everything was fine and this sometimes happened.
We also saw Mr B who told us that surgery went as he expected and the cancer was as he expected...he didn't give away much except that it was all as he expected.....what he was expecting, we really didn't know. We had to wait for two weeks for the histology report to come back on the offending piece of colon, which incidentally was the sigmoid colon, or the corner at the left hand bottom bit to you and me !

On day 3, the Friday, I rang the hospital in the morning to see how he was doing, as I usually did, and they told me that Ady had had a really bad night and was in a lot of pain.
They said that he wanted to see me if I could get there, so I sped off in my car to be at his bedside.

He told me that he had the night from hell and had never felt pain like it. The epidural had gone down the right hand side of his body, and the surgery was on the left and not touching it at all, so the nurses had spent the night trying to move him onto his left in the hope the epidural would move too, and they also tried to walk him with a zimmer frame, but no luck.
In the morning, just before I got there, the consultant came to see him and said to remove the epidural and give the man some morphine. So there was Ady, sitting in a chair, wires coming from his arms and neck, an oxygen mask on, in a hospital gown with fetching support stockings and slippers, legs apart, as high as a kite pumping on his morphine.
Ady will put up with a lot of stuff, but he said he never wants to go through that again.
I must say, I felt desperately sorry for him, he looked as rough as hell and there was nothing I could do.

I got home that morning to an answer phone message.
 At this point,I have to say, that there are a couple of people who used to be mothers at the school who I am not particularly keen on, in fact, we used to be friends, but we have fallen out.
One of them had asked me how it had gone on the day of surgery, which I said as far as I knew, very well and he was fine. I thought nothing more of it.
The answerphone message from her friend saying how pleased she was to hear that Ady had been given the 'all clear' and that she wished him a speedy recovery. All clear.....ALL FUCKING CLEAR ?????, I didn't realize that saying surgery had gone well was the same as saying he had the all clear.
When I heard the message, and after just coming back from seeing Ady in such a mess, the ice queen finally melted. I just sat and cried.
We had two weeks to wait for the all clear, so I deleted the message and didn't reply. What's the point.

Things I forgot to talk about.

In June 2010, both the girls went on an end of year school trip for a week. We didn't know anything about Ady's cancer at the time.
I decided to get my lovely friend Andy to come and do some handyman work on the girls bedrooms as a surprise while they were away, because frankly their rooms were shocking and not nice little girls rooms at all !!
We worked bloody hard that week. Andy measured up for beds and wardrobes and shelves and things and left me to order all the stuff, clear the rooms of LOTS of junk and decorate......
I dropped the girls off for their trip, telling them that I would see if Andy could fix their wardrobes while they were away and maybe put a few shelves up, but not to expect too much.......I then went straight to B&Q and bought BRIGHT orange for Charlotte's room and BRIGHT yellow for Stephanie's room....well, it needed jazzing up but in hindsight, perhaps those colors were maybe a little TOO bright, but it did save on electricity !

Andy is a very artistic and creative person, and upon realizing that my ideas for the rooms were completely crap, I left him to it to do his own thing, and all I can say is WOW, WOW, WOW !!!! he did a brilliant job making wardrobes, shelves, beds and under bed drawers, and all with pretty little decorative bits on them.
He also laid laminate flooring upstairs as the carpet had had it after the electrician pulled it all up after the fuse box blew up a few weeks was old...
I spent my time into the early hours each morning painting all the walls and MDF, and by Friday, we had just about finished with new bedding and fairly lights and lovely sheepskin rugs. I was so chuffed with it all and wished that I had rooms like theirs when I was younger.

I picked the girls up and the first thing they asked was had I managed to to anything with their rooms, they had been really excited all week thinking about it....of course, I replied that I hadn't done very much and that I was far too busy working.I said that Andy was able to fix the wardrobe and straighten the shelves, but that was it. I even made myself sound irritated that they had asked. They said that that was OK and they were grateful that I had done what I did. I could tell they were absolutely gutted, and afterwards, they told me they felt their week had been ruined but they didn't want to seem ungrateful . I love my girls.
I wish I had taken a picture of their faces and delight when they saw their rooms, all nicely painted, new tailor made beds, wardrobes, shelves, rugs and flooring and the rest. That was a really happy day.

Of course, Andy had done such a good job on the girls room and landing, that I asked him to do mine and Ady's room, which he did and did an equally brilliant job.
So upstairs was complete and then I started thinking about downstairs which was in a state of dis repair.....I didn't realize that that would have to go on hold.....

It was lovely, cracking on with the house and the girls really enjoying their rooms and my planning what to do with downstairs. I had even done a deal with Topps Tiles to get a discount on the flooring as I was planning on buying so much. Steph is an asthmatic so carpets are a bit of a no no and what with cat hairs and wellington boots, laminate is SO much easier !!!

When Ady was diagnosed with his colon cancer, we knew he would have to have some months off work. We had no idea if chemo was on the cards or what was going to happen, but we did know that we would have to claim benefits.
I have never seen so much paperwork in all my life !! And what with being self employed, there was double the amount. For about two weeks, I ploughed my way through the paperwork which was quite swamping at times and thanks to the help of a lovely person who I have never met but is an online friend, who spent hours on the phone with me explaining everything as she works in the benefits system (I will always be grateful to her), we managed to get our £65. a week to live on.
I spent hours in the job center plus office, and in the council tax office and on the phone to the free school meals office and to the council grants place to see if we could get Stephs  singing lessons paid for.
I must have looked a right mess, stressed up to the eyeballs, with my folder and frizzy hair, my husband with cancer and my two girls and me fighting a battle to get every penny we could. But needs must, and I managed to get everything we were entitled to....I think.....

Times had now changed, from decorating bedrooms and planning our holiday  and living a fairly care free life with after school clubs for the girls and no problem if they wanted new clothes and little nicnaks, and take always when I couldn't be bothered to cook, to scrimping on our benefits money, going to the market to get our food and no more nic naks and random clothes. This was October and Christmas was on its way.....

I am a member of a forum and have made lots of friends on there. Its only when the shit hits the fan that you realize how bloody kind some people are.
Behind my back, they had got together and organised a whip round for us. At the end of November, I think it was, the post arrived and in it, was loads of love to shop vouchers. Now its not often I am speechless, but on this particular occasion I was !!
The kindness and compassion from people, some of whom I have never met, was truly amazing and I will be forever grateful to those who made it possible for me to get the girls Christmas gifts and food for the festive season....without them, I really don't know what I would have done !!!

And then there were some school mothers who showed huge kindness too. They got together and cooked meals for me and the girls so I didn't have to worry about cooking while Ady was in hospital. Boy did that take the pressure off, and of course, I gave them all marks out of ten !!!

Then there was another internet friend who used to be a diabetic nurse specialist. I have never met her, but she too, spent hours on the phone advising me about all things sugar related. Our old GP left us to get on with it but Sal made it all better...thank you Sal !

Right,I will get back to day two of the hospital in a bit.

Monday, 15 August 2011

From then until now.

Lots of people said last year that it would be a good idea to do a blog and so this year, I have decided to do one !

OK I will type what I can remember  as it comes to me everything that happened last year...this could take a while, and I will happily ramble on in my own rambling way making no sense whatsoever, but it will take you less time to read it than it will for me to type it !

So lets go back to May 2010 when Ady got up to go for a wee in the night and as he was weeing, a whole load of muck came out of his back passage, so of course, he woke me up to give me a full description. To cut a long story short, and because I will get bored of typing cos I have got lots to say yet, he went to see his GP's registrar.
She decided that as he wasn't anaemic and she couldn't feel anything 'up there', she would send him for a colonoscopy without any particular we waited, and waited, and then the letter came for it to be done on 27th August along with instructions and sachets......

26th August 2010
Ady read the instructions on the sachet and mixed the potion, about a pint a sachet and there were two of them!, and duly started drinking...he says it tasted like shite, and shite he did...all day and all evening......

27th August
It said on the letter that it would take about 2 hours for the colonoscopy to happen, so me and the girls dropped him off at the hospital and we went shopping, like you do.
I didn't think much of it and expected them to say he had either piles or IBS which is what his GP usually put his unusual bowel habits down to.
Ady rang me in town and asked to be collected, so off we went and when we arrived, expecting to pick him up and go home, he said that the colonoscopy man wanted to see us.
To cut another long story short, he said that he has found a sessile polyp whilst he was hacking his way through his colon and that he would need surgery to remove it. The girls were with us, who were 9 and 11 at the time and he said that he didnt think it was cancer but wanted him to have a CT scan the next day, oh, and he told Ady to go home and enjoy his kids...hmm, I thought, that is a strange thing to say and arrange, for a non cancerous polyp.....I did wonder if he didn't want to say anything in front of the girls. I am grateful that he didn't.
Google being my friend, told me all I needed to know about the difference between sessile and pendunculated polyps and the chance of cancer being present and the fact that a CT scan was arranged for the next day, I was quite convinced that Ady had cancer of the colon.

8th Sept.
Off we went to see the consultant for the results and yes, it was confirmed that Ady did indeed have cancer...the very thing he has always said that he hopes he NEVER gets.
Mr B and his team were fantastic. The colorectol nurses had a long chat with us and what the next steps would be. They gave us their number to ring as they were sure we would have questions and need reassurance..we were on the phone quite a lot that fortnight!!
As Ady is taking Methotrexate for his arthritis, Mr B ( our consultant surgeon) was concerned that this would have an adverse effect during surgery and he would be very prone to infection, so, we were packed off to see the rheumy guy in an emergency appointment to see what to do.

Whilst we were there, the nurse asked Ady for a wee sample, so off he went and duly piddled in a plastic NHS cup. The nurse inspected it with her stick and said " Goodness me, are you a diabetic?" to which Ady replied "not that I know of but you nurses keep throwing that one at me".."well" she said "you have +++++ next to the sugar, we will have to look into this" and off she trotted telling us to phone her in a few days for the results.
Anyway, back to the rheumy bloke...he said that it would be OK for Ady to stop his tablets for that week, but thats boring cos I really want to say about the whole diabetic saga !!

Me in my state of wanting everything organised and to make sure everyone knew what was going on each step of the way, decided to ring our GP and let him know that they think Ady might be a diabetic and what should we do......The GP didn't seem too bothered, and I got the impression, as usual, that I was bothering I left it and rang the nurse a few days later to get the results and she said that there didn't seem to be a problem..*confused*
I left a message for the GP to say they now think he isn't, but in the mean time, Ady had gone for his usual DMARD test for his methotrexate and arthritis on the Thursday.On the Friday morning, our GP rang and said to me " I thought you said Ady wasn't diabetic" I told him that I was just passing on a message and how would I know! Anyway, to cut another long story short, it turned out that Ady is infact a diabetic and needed to see the GP on the Monday.
So, two weeks pre op and off we go to see the GP who I have to say, since the cancer diagnosis, was not being overly sympathetic, but in fact, seemed quite, defensive.....Ady was feeling less happy with him and really not feeling any compassion from him at all .He never did like him much tbh.
So, in his office, he told Ady he had diabetes and that he needed to cut out his sugar and not eat white rice or ripe bananas. During this meeting, I asked if he was type one or type two, to which he said type two. I asked him the difference and what it all meant to which he replied " Oh, I thought you would know the answer to that since you asked the question"....what an arrogant shit, needless to say, that was the last time we saw him.

Ady and I were not only very very worried that he had cancer and the operation was looming, but now he had diabetes, which incidentally explained his feeling very unwell for a few years, and our GP was being rude and arrogant and not helpful at all.
We decided that it would be best to change doctors, so I checked with the colorectol nurses that it wouldn't bugger the proceedings up and she said not a problem at all.
I went to register at the new surgery and while I was registering, our new GP was hanging around the reception area, so we had a chat about Ady and he said he would like to meet him before his surgery...blimey, I thought, our old GP wouldn't have given a shit, and here is the beginnings of what is , so far a great GP and good family relationship with him.

6th October - Pre op assesment day.
This all went pretty smoothly until the stoma nurse came in with her range of bags and leaflets to discuss illeostomies and colostomies and stoma then dawned on me that if they have to fit one of those things, even as a temporary measure, there is a risk of him turning over in bed and my finding shit up my nice cream walls in the morning !!!!
Ady found this rather amusing...

12th October - The day before the op.
So, today was a bit nervy to say the least !
Ady was supposed to be in the hospital at 6 o'clock, but we had to ring in the afternoon to make sure a bed was available.
We had arranged to pick Steph up from primary school early so we could get onto secondary school in the next town to pick Charlotte up at the end of her school day.
So, at 2 o'clock, I phoned the hospital to see if the bed was OK, well feckity feck, the bed lady said there was no bed !!! Jeeeeesus, we had his bag packed, the kids organised, mentally prepared ourselves for major surgery, and she was telling us their was no bed??!!! We could NOT believe it....she said ring back at four and she will see what she can do....if I remember rightly, I think I was quite polite.....under the circunstances..
So I rang back at 3 and she said "Did I not speak to you earlier and tell you to ring back at four?" I cant remember my words exactly, but I was quite stressed and Ady was near to tears, and the girls needed picking up, but anyway, she told us to come to the ward for 8 cos they needed to kick out the day cases *sigh*
As we were going out of the door to pick up the girls from school, I heard Ady say "Oh bugger it". I looked round to find him scrambling around on the floor looking for his crown that had just fallen out !! FFS
So, we phoned our lovely dentist lady (such a shame she is leaving) and she said she would fit Ady in as soon as he could get there.
We picked the girls up and shot off to the dentist, decided to leave the tooth out in case it caused a problem during surgery and went home to a nice cup of coffee and four dozen fags for me.
I decided at 7 to ring the ward, (avoiding the old bag bed lady) and make sure they were OK for our arrival. The nurse said she was expecting us at six like it said in the letter...oh triple FFS, so off we shot again and into the car and off to the hospital, I was stupidly worried that we were very late and would miss surgery if we didnt get there on time...dunno why..

So, with Ady settled in after a few hours, me and the girls went home.....

13th October - Operation Day.
Ady and I had agreed previously that if the timing was right, that I would come to the hospital having dropped the girls at school and walk down to surgery with him. He had never stayed in a hospital before and the whole thing was pretty bloody scary for us all.
He sent me a text about 7.30 to say the stoma nurse had been and marked him up in case he needed one as there was a 50/50 chance he would.
At 8 o'clock, as I was organising the girls with breakfast and school stuff, Ady rang saying "They're coming to get me, they're coming to get me now!" so poor Ady had to go to surgery on his own while I pretended all was normal and took the girls to school. I didnt want them going into school knowing their dad was in theatre right then.
Today, I just wanted to be on my own, I didn't want to talk to anyone, I just wanted to be with my own thoughts......
At about half one, the nurse phoned from ITU to tell me that they were expecting Ady within the next hour and she thought she would ring to let me know...I panicked when they rang thinking there was a problem but she reasured me that she was just being nice !

They rang again at about 2 to say he was on ITU and all was OK and they were settling him in...."does he have a bag?" I asked, "No" they said....thank God, my walls are safe I thought.

I just had time to go and see him before picking the girls up, so off I went. Ady looked much much better than I thought, so much so that we decided that if the girls wanted, they could come and see him after school. I took some photos of him ( I will try and work out how to put these on here somewhen) and showed the girls and they said they would like to see him.
Later that afternoon, we all went to the hospital and Ady was pleased to see us. Charlotte just stood there stroking Adys arm with a smile on her face while Steph stood there looking a bit white and said that perhaps she felt a little unwell...
I took her to a chair and a nurse gave her a glass of water and we stuck her head between her knees. I think there were too many wires and needles for Steph, so I asked the nurse assigned to Ady to show our children all the wires and machinery and explain what they were all for...both the girls, and me, felt much better after that !!