Another sleepy day, but a wakeful evening. Both the kids were out and Mike sat complaining that we were watching Big Brother even though they weren't in - he is still a secret fan because he knows everything that is going on in there, he obviously watches it much more than I do.

Hannah helped with the papers this morning, we had the radio on to try and save us from her singing, but she sang with it - not what you want to hear at 4.00 am!!

Gill is coming over this evening, her text message says "I will bring nice food" so that sounds good to me. She always manages to arrive with something yummy!

We go away a week today so I am on the countdown to getting jobs that I need to do done now. I intend to sort the office out this morning to make sure everything is up to date. Hannah assures me that the bedroom will be done today - I get myself in a real state about it because Jean had the place so tidy, clean and sorted when she was staying here and I have not kept it up to that standard. (I have been a bit busy though!)

Mike has already been up once, but has now gone back to bed and will probably sleep until Gill arrives.

As expected Mike slept all day yesterday so our day and night routine has totally gone to pot again.

I still haven't caught up on my sleep but did have a sleep yesterday morning and an early night last night. Cameron has got up to help with the papers this morning, which will be a great help, he does all the lifting and it really speeds up the process. We do have two paper rounds to do though because two of the paper boys are going on a day trip to France.

Hannah is off today and i'm hoping that the bedrooms may continue to be sorted today, I told her yestaerday that she has one week before grandma and grandad need to sleep in it so she better get to work on it.

Mike went to day hospice yesterday. I was amazed how lively he was when he got up and he only had a little nap while he was there too.

I slept for a while in the morning, but I really need to sleep properly today, I am struggling to keep my eyes open. I need to be around this afternoon as I have got a girl that is interested in working Saturday afternoons coming in.

We went to Mike's Auntie and Uncle's caravan for dinner last night, it was really nice to have an evening with no "medical TV" and no kids moaning. Mike has now managed to be awake for two days and asleep without any problems for two nights - dare I say we are getting in a routine??

Mike was awake all day yesterday. He sat chatting to his auntie and uncle all day, he was on a bit of a high really. When they were leaving last night he told them that depending on the result of the August scan he would like to go back to visit Aberdeen and says that if the tumor hasn't changed we are going to go to Luton and get an EasyJet flight to Aberdeen to go and see them.

Mike is looking forward to going to day hospice today, he really missed going to last week. I intend to catch up on some sleep this morning while he is there.

Mike slept most of the day yesterday, but in the evening when I said that I was going to bed he complained that I had left him in bed on his own all day and now I was going to go to bed and leave him again. I told him that it's nearly our holiday and he can have 100% of my attention 100% of the time then. This morning when the alarm went off he complained that I was getting up again - he forgets really quickly though, by the time I came out of the bathroom he had moved over to my side of the bed and was fast asleep again.

Mike's Auntie Alison and Uncle Alec are coming to visit today, he's really looking forward to it and it will do him good to have different people to talk to. I ran out of time last night, but Mike kindly reminded me that I would need to hoover and clean the mirror in the bathroom this morning before they come. Sometimes I don't know how I prevent what I really want to say escaping from my mouth - but I think twice and say nothing!

I managed to recruit a new paper boy that is starting today and the two that have been away are back as well so hopefully I won't have to go out delivering this morning.

Mike slept all day yesterday. I did my best to give him food that doesn't need chewing so his mouth has a chance to heal.

I noticed more than ever yesterday that he was very repetative, he kept telling me about things that happened last week like they had happened yesterday - I was confused in the end. It is very difficult because I try not to question him too much because he gets upset if he knows he's not making sense. He also had problems with Hannah's name on Friday he called her "Harry", Hannah and me laughed but he genuinely couldn't remember her name for a while.

I need to start getting organised for our holiday this week, i've made a list of prescriptions and drugs I need to sort and a list of things I need to do for the business. (my mother-in-law will be impressed with my list making!) Mike made me laugh last week when he said I didn't need to worry about him because he travels light - we have the wheelchair, oxygen, drugs and walking stick before we even think about his clothes. Last time we went away the rest of us had one little bag each beacuse that was all that would fit in the car. I am seriously considering whether we should get a roof box.

Mike is getting a bit stressed out about his tooth, he thinks it should have healed by now but he is still struggling to eat.

Hannah, Cam and me (and uncle Cyril) spent the morning sorting out kids bedrooms - it doesn't really look like we have got very far but I suppose we have made some progress. There is now a double bed in Hannah's room which was one of the things that we wanted to achieve.

In the afternoon we had a major rain storm and the mark up room flooded again, Rod was in the shop and made an excellent job of sweeping it out, sorting out sand bags and cleaning out drains - thanks.x

I have had a manic morning again, I rang the WHS about today's lack of Mails, their answer was they normally have 13 thousand and today they have only got 9 thousand - do they want to sell papers or not?

As expected Mike slept most of the day yesterday, his mouth was giving him some problems (nothing new there then!!) Everytime he eats anything he is really uncomfortable, I am running out of ideas of stodge to feed him, he's had mash, scrambled egg, soup and pasta.

I have had a manic morning already WHS didn't deliver enough Mails and to keep my customers happy I have had to run around all the petrol stations in Newport to buy theirs - no profit in that, but it is better than letting customers go elsewhere.

Hannah got up and helped this morning, it makes such a difference, although she is very different to Cam in the mornings, she has been singing and being very loud - I would like a happy medium between the two of them.

I don't have too many plans for today, but Hannah and I hope to have a bit of a Spring (Summer) clean and start getting a bit organised for our holiday.

Mike had a good day yesterday. He was up, dressed and awake from 10 am onwards - Jean and Eddie were here for the day and so they kept him entertained. He then came to bed at a reasonable time and has slept all night, hopefully a day awake will knock him back into proper day and night mode, although it is more likely that he will sleep all day today to catch up on what he missed yesterday.

Jean and Eddie were a great help to me yesterday and sometimes I really don't know where I would be without them. x

I have got a normal busy Friday with bills and wages but hope to spend some time with Mike later in the day. If I let him sleep all day I won't have any chance of him going to bed tonight.

As expected Mike wasn't well enough to go to day hospice yesterday, he slept all day and appears to have been awake most of the night... I went to the meeting there yesterday but got really upset and wished that I hadn't gone.

In response to Amanda's comment asking if the tooth fairy had been, no she hasn't, but it did remind me of Cameron when he was little - one morning after a visit from the tooth fairy he was really excited when he told me that the tooth fairy had the same dressing gown as me. I thought that I had been caught out but in those innocent days he was just impressed that her dressing gown was the same and that she left a £1 under his pillow.

Jean and Eddie are coming today, I look forward to their visits, Jean organises dinner and it just feels so good to have it done for us. Eddie intends to cut the grass but i'm not sure what the forecast is.

Mike was very brave at the dentist, in fact I think that there was times when I was worse than him. He has had the tooth removed and has stitches. When we first got home he thought he was fine and felt so much better than he had for the last week but I was concerned how he would be when the anestheticwore off. As the evening went on he became more uncomfortable and has had problems with it during the night, each time he has woken me up almost asking for a miracle, i've sold out of miracles, but we have rinsed it in salt water a few times if that helps. It really is like having a third child - he said to me "I don't like it, make it go away" just like the kids used to when they felt poorly.

It's a busy day today - Mike is supposed to be at day hospice, but I don't know if it is worth him going if he can't chatter. I have got a meeting at 8.00 this morning and then i've got a meeting at Willen at 10.00 - I need to fit in doing some housework too as Jean and Eddie are coming tomorrow - I really don't have enough hours in the day.

No Cameron this morning - I think he takes the term "casual labour" a little too far. It has been much harder without him this morning but I need to learn that if I don't expect anything from him I won't be disappointed. I do find the lack of support that I get sometimes from my kids really hurtful, I know they are teenagers and that teenagers are a breed of their own, but it sometimes feels that they have no understanding that I am hurting too and that some mornings I don't actually feel like getting out of bed and facing the world, but if we want somewhere to live and food etc it has to be done.

I had quite a late night last night, Mike asked me to stay up with him because he had been a bit upset when everyone had gone to bed the night before, so I drank lots of strong coffee and we chatted. We had pizza to celebrate the end of Cam's exams last night but today when he hasn't got up to help me I wonder why I bothered to make the effort for him. In addition to that the pizza dislodged Mike's temporary filling.

We have a busy day today, Liz from Willen is coming this morning and Mike has an appointment later this afternoon to hopefully have the tooth removed. I will be glad when it is out but I think I am more anxious about him having it done than he is.

Today has been a much calmer morning. Cameron got up to help at 3.30am, which really made a difference - I won't really settle until the last delivery is made but all the papers are now in the right places for that to happen.

Mike is still suffering a bit with his mouth, but is eating better and his face isn't swollen anymore. He was awake in the evening but I slept so wasn't much company for him yesterday.

It's Monday again so carers at Willen, I hope to get a sleep this morning otherwise I may use the two hours this afternoon to sleep instead.

The blog is rather late today. The new deliveries started this morning so I got up at 3.00 am instead of the usual 3.45 am and was on the go constantly until we closed at 12, I then went back to bed and slept until 5 pm.

Everything went quite smoothly apart from Cameron had promised to get up to help with the lifting at 4.00 am and after being called several times eventually got up at 5.45 when the majority of the lifting had been done. He then came out on the round with us and slept in the car - needless to say he is not my favourite person at the moment.

Mike is ok today, he woke up at 4.00 am to get Cameron up but obviously wasn't very successful. He hasn't really eaten a lot today but has had dinner this evening so I am not as worried as I have been. He is still taking antibiotics for the infection in his mouth and hopefully the tooth will be taken out on Tuesday.

Mike is sleeping much more, but I would rather that than him be up and in pain - toothache is a horrible pain at the best of times without everything else he has going on.

Hannah and Cameron both stayed out last night so I had a very quiet evening. It did mean that for once I could have had the remote control but I did some stuff on the lap top instead. Mike got up just as I was thinking about going to bed so I went later than planned and am suffering a bit for it this morning.

I am taking over a new little business venture tomorrow, we will be delivering to 193 new addresses. I have spent the whole week doing admin in preparation for it but will be glad when the papers are here and we can get on and see if the planning works.

The befriender is coming this afternoon to sit with Mike so that the kids and I can have a couple of hours out. I think the plan is to shop for Father's Day presents, so I have told them that they have to have an idea what they want to get because I am not wandering aimlessly around the shops. Mike was in hospital for Father's Day last year so it will be nice to have him at home so the kids can spoil him.

Mike was awake a bit more yesterday evening but was still a bit restless during the night. He is still having problems with his back as well as the tooth. I am going to chase it a bit more today - I do feel that I am banging my head against a brick wall at the moment!

I am exhausted, I haven't had a sleep during the day at all this week and not really been sleeping that well at night either. I try not to plan daytime sleeps as I get very grouchy if something crops up to stop me having them. Mike keeps telling me to have a break and have a sleep but this week it has not been possible.

Cameron has got an exam today and then only has one more left, that will be one less stress to worry about, although I am very impressed at how he has got himself organised for them.

Something amazing happened this morning! - Cameron met me on the landing at 3.45 am and said "do you want some help this morning mum?" I don't know whether I should be really grateful or worried. Should I be concerned that he is not sleeping? Should I think that he wants to borrow some money? or should I think he is just being good!?

Yesterday was another nightmare day - it didn't start too bad, Mike decided that he was going to go to Willen but at lunchtime I got a call from them saying that his temporary filling had fallen out and his face was quite swollen. They suggested that I go back to the dentist to get some advice about what they could do, once again I was running around between them and Access, who say they haven't received a referral even though I was stood in the dentist when it was faxed to them. Willen made lots of phone calls but we are still no further forward apart from the dentist has prescribed anti-biotics for the infection. He has been really restless during the night as he is still in pain with it, so I will do some more chasing today.

Mike didn't have a very good day yesterday. He lost a filling on Sunday and has been saying that it is fine and that he doesn't need to see a dentist. Yesterday he was in a lot of pain and unable to eat so I spent four hours trying to find someone that would actually look at him. My first port of call was the dentist obviously, to be told by the receptionist that because of his condition and the fact that he has seizures "they wouldn't touch him" , she told me I needed to speak to Access, I rang directory enquiries and they had no number listed. I then rang Willen for some advice, they told me to go to the GP, I went to the GP and was told that they couldn't understand why the dentist wouldn't see him but gave me directions to Access. I then went to Access who told me that it was the right place but they can't see anyone without a referral from the dentist. I went back to the dentist, where the same receptionist that I had seen four hours earlier spoke to a dentist and gave us an appointment for 2.30 pm. (What a waste of a morning!!!!). We went to the appointment and they took an x ray and put in a temporary filling, but they need to refer him to the hospital.

Mike slept when he got back from the dentist and didn't want to get up for dinner. When he did get up he could remember that he hadn't felt well, but didn't remember why - probably best that he didn't. He had a bit of a restless night and woke me up to tell me that Cam couldn't sleep.

Today is day hospice day, i'm not sure if he will go because he doesn't like it if he isn't feeling well when he is there - I never quite understand that, they are much more qualified to look after him than I am.

ONE YEAR ON.....

It is a year ago today that Mike had his first fit and this horrendous journey began. We were talking about it last night and both said that it is a very weird feeling - when we look back at what has happened to us, the awful treatment that Mike has had, how ill he has been, telling the kids the worst thing possible, ... the list is endless. I know that the strength of Mike's personality and the fact that we have always had a good happy marriage has got us through. It seems weird today to say that it is a celebration, but we feel it is a big achievement that we have fought this horrible disease for a year now.

Jean and Eddie came yesterday and I went to Willen to carers day, I was very pampered and now feel refreshed to face another year! As usual Jean and Eddie did lots of jobs while they were here. Thanks x

Thanks to all our family, friends, staff and the proffessionals that have supported us so much over the last year, and to everyone who takes the time to read and comment on the blog - we really appreciate it. x x

Another late blog today - Judy did the papers so I could stay in bed, although Mike woke me up at 4 am to tell me that I had overslept, it was a lovely feeling that I could just turn over and go back to sleep.

I find the mornings really weird when I haven't been up at 3.45, I didn't realise that I have such a routine, but it takes me ages to catch up.

Mike has been up since 6 am, he seems to get really anxious when people are coming and asks several times when they will be here. I have tried to reassure him that it is his mum and dad and if he is asleep they won't be suprised or hurt that he is not up entertaining them. I can understand when it is nurses that are coming but I think it is odd when it is family.

I sorted out some of my technical problems yesterday. The washing machine was still messing around, I emptied the filter and found £2.75, a cocktail stick and a piece of plastic in it, needless to say it is much more efficient now. We were getting fed up with trying to solve the problem with the oven and in the end we just pressed all the buttons in every combination possible and it works!!

Mike had another sleepy Saturday, but had quite a good evening, he even decided at about 9 o'clock last night that he was going to phone his mum to tell her something that she "needs" to watch on TV today. It hit home the reality of the situation because he couldn't remember the telephone number and I had to tell him three times before he dialled it. Sometimes it feels that it is just easier to do things yourself but Mike is so determined that things aren't going to beat him we have just be patient.

Jean and Eddie are coming for the day tomorrow. It is carers day at Willen and I am being let out on good behaviour.

We are having a few technical difficulties with home appliances this week. Firstly on Wednesday Hannah said that the washing machine had broken, the washing was stuck in there and the water wouldn't drain, after about 45 minutes of me trying to sort it I noticed that she had the rinse hold button in, obviously when I pressed that it rinsed and drained fine. We have had to replace the lawn mower, it has been a bit tempremental for a while but this week decided that it had totally had enough. Yesterday we had a power cut and now we can't get the oven to work. We didn't discover this until I was about to put the dinner in last night, so we had to abandon that and have a take away - Cameron is going to have a look at it today.

Just to finish the week off in style, Cameron had the sprinkler on in the garden last night, the hose goes on the tap in my office, about an hour later when he went to check it he came upstairs and said "there's been a problem with the hose, the sink has overflowed, but don't worry" when Cam says don't worry it is really bad news - I went downstairs and the office was under water, how it didn't get my main computer I don't know - maybe there is a god up there watching me after all, though it doesn't seem like it very often! He did clear it up, but this morning lots of things are damp and the floor is a bit squelchy.

Mike slept quite a bit yesterday and had a warning of a fit last night, I always amaze myself how quick I jump out of the chair and get the medication when his face starts twitching. Thankfully we caught it in time and it didn't develop.

I still find the fact that Mike's opinion changes like the weather unbelievable although I should be used to it now. He has moaned about Big Brother and told us that he was not going to watch it because it was "full of pathetic people trying to make themselves famous and they should get a life", so if we have wanted to watch it we have watched it in the bedroom. We have since found out that Mike is a secret Big Brother fan as he seems to know an awful lot about what is going on in the house. Cameron and I questioned him about it last night and he said "it's really good, I didn't say I wasn't going to watch it" - we just laughed, this is what it is like here, Mike's opinion changes so quickly that you never really know where you are.

I am really pleased to see that there is a comment from Suzanne and Colin in New Zealand and relieved that teenagers seem to be the same the world over. (please email me - joanne.kerr@hotmail.co.uk so I can get your email address).

The day has started better today, at least I got up on time although I am exhausted and feel like I haven't been to bed.

Mike slept all morning and was awake for a little while in the afternoon and slept again until medication time, then was up until the early hours of the morning.

Cameron hasn't got an exam today so has a day of study leave, so no doubt I will have all three of them in bed until lunchtime. Although the fact that Mike has this illness makes me very angry and upset I have always accepted the added workload that goes with it with running the business and caring for Mike and just got on with it, but sometimes when I am dead on my feet and everyone else is sleeping or flopped on the sofa watching telly I feel that I am being taken advantage of. I wish there was a text book that would help not only the parents of normal teenagers, but those of teenagers with a terminally ill parent who think that because of their grief it is acceptable to do nothing - sometimes I feel like doing nothing but the need to survive makes me carry on.

Things can only get better today!! I overslept this morning, I looked at the clock and I should have been up 45 minutes earlier. I didn't know what to do first, so threw some clothes on and came downstairs to find Judy stood on the doorstep in the rain - I feel so guilty. My head is now pounding and I am still not really awake. I only remember oversleeping once before when Mike was in hospital and Jean and Eddie were staying, Jean came in to my room one morning and gently told me it was 4.30 when I should have been up at 3.45 am - I suppose I had a bit more of an excuse for it then.

Mike was at day hospice yesterday, he had a good day but was very tired. He went to bed at about 6 pm and slept for a couple of hours until his medication was due, although I don't know if he would have woken up then but the kids were arguing and it sounded like a war zone.

We don't have any plans today, but I feel that I might have to catch up son some sleep to make sure that I don't oversleep again.

Mike was awake all afternoon and evening yesterday. He had decided that he was going to tidy Cameron's bedroom, he opened the door and changed his mind, I then got it in the neck for "allowing" him to have his bedroom that untidy - in the big scheme of things if he wants to live in pig sty that is up to him, as long as I can shut the door it makes no difference to me anymore - I have much more important things to worry about.

Sadie brought me a tray of plants for the garden yesterday, thanks for that. The garden is beginning to look quite good apart from the fact that the lawn mower has died and the grass is far too long. I have added it to my list of must deal with items.

Mike is going to day hospice today and I have an appointment with Sandy there this afternoon. I intend to sleep at some point between dropping Mike off and going back. I did attempt to sleep on the sofa yesterday afternoon but I do always feel a built guilty if Mike is actually awake that I should be too.

I feel much better about Mike today than I have over the last few days, I actually managed to get him to eat three meals yesterday, whereas we have been struggling with anything more than breakfast. He was awake a little more yesterday as well.

I went to carers in the afternoon, there was a big lack of volunteers so I made the tea for all the others, I didn't mind, it probably did me more good than sitting the whole afternoon focussing on chatting about how rubbish things are.

I spent most of the evening doing housework, it's very unlike me, but I got loads done and feel quite good about it now.

When Mike got into bed he complained that he was cold, I told him to turn the fan off, but he wouldn't, he said he likes it. I don't actually know what he likes about it, it makes a hell of a noise and sounds like it is pouring with rain. He opted for wrapping himself in the duvet - he really does have problems with his thermostat.

I'm late blogging today. Judy and David did the papers for me again this morning and I had another lie in. I never woke up until 7.45 am, four hours later than normal.

Mike was a bit of a nightmare last night, he decided he was hot so woke me up to tell me. He then decided he would go and get the fan, when he came back he remembered that there is a bookcase infront of the socket that wasn't there last year, so proceeded to empty all the books off the shelf onto me in bed. I know exactly where the socket is and which three books need to be moved, but I didn't have the energy to tell him or get out of bed to do it so just became buried under a massive pile of books.

It is carers today, and I really feel like I need some caring - Cameron has got an exam today and has made himself sick several times with worry about it. Sometimes I just wish that I could have all three members of my family happy, well and playing the game all at once rather than me living in fear of opening my eyes in the morning because I don't know what rubbish I am going to have to deal with next.

Everything went a bit pear shaped yesterday. Cam asked me to cancel the befriender because of his football and then an hour later decided that he had a bad leg and couldn't play anyway, he then complained that I wasn't taking him out - another no win situation!!!

Mike had another sleepy day, he woke up for his lunch and then was promptly sick, we don't know if it wasa result of his cough as he says he can't remember feeling unwell. Gill came in the evening, she arrived holding so many flowers and plants that she looked like she had raided the garden centre. Thanks Gill x x

I woke Mike when Gill arrived and he was resonably chatty, although he was more opinionated than he has been for a little while and a bit confused.

There's not a lot of news in the Kerr household today. Mike was a bit restless yesterday and got up and went back to bed several times.

The befriender is coming this afternoon to allow Cam and me to have some "quality time". Cam is playing in a football tournament from 9.00 am this morning so I don't know what he is going to want to do with the time.

Jean and Eddie came yesterday afternoon and brought old photo's that Mike had asked to see, he had a good afternoon looking at them and he spent the evening telling me little stories about his grandparents.

We don't have any plans for today but Mike will probably sleep a lot because he was awake longer than normal yesterday.

It's bill and wages day again already - I really don't know where the time goes.