As suspected Mike slept all day again yesterday. I do worry that increased sleeping indicates progression of the illness but when he is awake we still have some precious good quality time.

Hannah cooked dinner yesterday which was really nice - it always tastes that much better if you haven't had to cook it yourself. Both the kids spent some time attempting to sort out their bedrooms in the morning and as a result my washing pile has increased somewhat.

Liz from Willen is coming this morning and I have carers this afternoon. We have lots going on this week, I am already in a panic about when I may get a chance to sleep.

Mike had another sleepy Saturday, only getting up briefly at lunch time and then sleeping through until dinner time. He didn't come to bed very long before I got up this morning so I don't expect his sleep pattern to be much better today.

Cameron had a very stressful day watching the football, not only was he not happy that Chelsea managed to draw but really fed up that Manchester United won. I don't know why but his obsession with Chelsea inadvertantly rubs off on me, I find myself asking questions and I suppose in a strange way supporting them.

Jean and Eddie arrive back in the UK today. I can't believe how quick the time is going, when they left in January the end of April seemed ages away and now it is here. I don't know if time seems to fly by because time is so precious to us at the moment or whether it is a sign of getting old. My mum used to always say that time goes quicker when you get older - I don't know what the logic is there but I can certainly relate to it.

Mike had quite a good day yesterday, he was awake for a couple of hours in the afternoon and we had a change of TV viewing, although I don't think it was much of an improvement. He watched Sixth Sense with Colin Fry and then Crossing Over with Johnathon Edwards - it all spooks me a bit, but when I asked him to change the channel we then had A&E - I decided I was better off working so went back down to the shop, he went to bed and was fast asleep in no time.

Hannah did the food shopping with me yesterday morning, but by the time I closed the shop and went upstairs last night Cameron had been home from school and the fridge had been raided big time! Mike did later confess that he had helped Cam eat the yogurts, and that he had found a cheescake and eaten that - I did have to comment that it is not worth him getting upset about his steroid tummy and his stretch marks if he is filling his tummy with goodies and then telling the nurses that he doesn't eat a lot.

Mike was a bit of a sleeping beauty yesterday. The nurse arrived bright and early to do his bloods, but unfortunately tried both arms and couldn't get blood out of either. A second nurse came before lunch, but he had taken his tablets by then so we're not sure how accurate the results will be.

He got up for dinner at 6.00 pm and was on quite good form all the evening.

I went back to the dr about my blood pressure yesterday, it is still high, but she did reassure me that she is not that suprised considering everything that is going on but she is going to monitor it.

Yesterday was a nightmare! Mike woke at 7.15 am and started asking when the nurse was coming to do his bloods. I told him that she comes sometime between 8.30 am and 9.00 am, between 7.15 am and 8.30 am he must have asked me the same question ten times. At 8.45 am when she still hadn't been, although I was not overly concerned because she often doesn't come until just before nine, Mike went mad saying he wasn't going to wait any longer, he was sick of waiting and even though I tried to explain that he couldn't take his tablets because it would affect his bloods he took them - he said "i've not got time to waste, i'm tired and want to go to sleep". Two minutes later the nurse arrived, said, as I had that it was pointless doing his bloods if he had taken the tablets and went away again. Mike then went mad, and it was really difficult to get him to calm down. I decided that I would leave him for ten minutes as he had said he wanted to go back to sleep. When I came back in the bedroom, he said "am I not getting breakfast today?" I reminded him that the whole reason he had taken the tablets was because he wanted to go back to sleep, so I warned him that if he didn't sort himself out he may be wearing his breakfast.

I took him to day hospice and he continued to moan there, the nurse asked me if there was anything she should know, I explained about the bloods and Mike complained about everything that has ever bothered him!!! The nurse looked at me and said "I don't think we are going to win today", I have given up trying to win - banging my head against a brick walls sums it up more.

I had a an appointment with the nurse for my blood pressure yesterday and was told that it is quite high and that I need to see the GP tomorrow - she asked "am I under any stress at the moment" I don't think she was very impressed when I laughed and asked her "where do you want to start?"

It's Wednesday again already, so it's bloods before breakfast and day hospice again today.

After Mike being awake early with me yesterday he slept for the entire day. He was up for less than an hour at lunch time and slept through to 8.15 pm when I finally managed to wake him to take some medication. I attempted to wake him at 5.00 pm as recently on Tuesdays we have met Hannah from work, I could not even get him to answer me, so in the end had to phone Cameron and get him back from playing football to come home to be with Mike while I went to get Hannah.

It is Hannah's day off today and she has promised to do some more housework and help in the shop when the stock delivery comes so I can get some sleep today. I must say that Hannah has been much more helpful and an easier person to live with over the last week. (we love her really!!!)

Today is a strange day!!! When the alarm went off this morning Mike put his arm across me and told me that he didn't want me to get up today and to stay in bed with him all day. The thought was lovely but I did have to convince him (and me) that I really did need to get up. When I came out of the bathroom he was waiting outside the door for me and then just a few minutes after I had come downstairs he was beside me again - when I asked him what he needed, he replied "I just want to see you". I find this a bit random...

Liz came yesterday morning and seems to be quite pleased with Mike. She asked how I felt he was doing and when I gave my honest opinion about how outspoken and opinionated he is he went mad saying "you should try having a brain tumor then you might understand". I hate it when he says this but recently it seems to be his answer to everything. It is like no one is allowed any feelings because he thinks he has got the monopoly on all feelings and emotions.

Sadie came to show us her blisters and her medal yesterday - what a star!!!

Happy 70th Birthday Eddie!

Well done to Sadie and Belinda for completing the marathon and raising loads of money for Willen.

We had quite a good day yesterday. Mike slept most of the day and I slept in the afternoon. I was pleasantly suprised that when I got up Hannah had done lots of housework, so a big thank you to her. I read the comment from Amanda this morning, I have known Amanda since we were in nappies (so a very long time!) and unfortunately she knows me too well and pointed out that housework has never been my top priority - Life's too short is my excuse for that, I don't know what my excuse was before but Mike's illness has taught me to live for today because you really don't know what is going to happen tomorrow.

Liz from Willen is coming this morning and I am going to carers this afternoon. I plan to get Mike up and keep him busy this morning so he sleeps while I am out.

Good Luck to Sadie & Belinda with the London Marathon
Hope it all goes well, I will be trying to track down some photo's for the blog.

Yesterday was a good day, Mike slept all morning, we both slept in the afternoon and then he had a wakeful evening. Both the kids stayed at friends last night so I was quite reluctant to go to bed because the minute I go Mike starts "messing around". Yesterday he decided he was going to sort some washing out - I have got up this morning to find that he has put lots of dirty washing in the bag of clean washing that I had ready for the ironing lady to collect tomorrow morning. I continue to bang my head against a brick wall.

Talking of banging my head against a brick wall I had to part company with one of my paper boys yesterday and have a feeling that he is not going to be the last. Dealing with seventeen teenagers was never going to be easy but I do get the feeling that they are seeing how far they can push me at the moment, and unfortunately for them they have pushed me far enough.

The kids are staying in tonight as we are having a major housework blitz. Mike's mum and dad are back from America next weekend and I feel incredibly guilty that I have not been able to keep the housework up to the standard that Jean had it while she was here. I sometimes feel that I just muddle through life and my priorities change every day, quite often housework is pretty low down the list as Mike and the business have to come first.

We had a nice day yesterday. Mike and I went to the garden centre and had lunch there, he insisted that he wasn't going in the wheelchair and walked with a stick, he got tired quite quickly and asked to come home but it does a lot for his confidence if he can walk as much as possible. After I closed the shop we went to Costco, he did have to give in to the wheelchair there but two trips out in one day is almost unheard of so he had done really well.

Liz from Willen rang yesterday and she is going to visit on Monday, thankfully Mike now thinks that she is the best thing since sliced bread again. I was getting a bit concerned about his attitude to nurses and support because they are my lifeline and have been fantastic throughout all of this by always being at the end of the phone and visiting regularly.

The day did get better as it went on yesterday. Sadie arrived with flowers after reading the blog, which was lovely - thanks for that, and good luck with the marathon - only 2 days to go!!!! I'll be glad when it's over, i've got dark chocolate flakes going out of date here because of the healthy eating plan while training.

The nurse came yesterday morning and Mike slept (and snored!) through the whole visit - that's why he thinks they never come. Hannah made us lunch which was very nice and then she came shopping with us in the evening. Mike and I plan to go to the garden centre and then out for lunch today if he has enough energy after going out last night.

I had the worst day I have had in a long time yesterday. I felt very down and cried I don't know how many times. Mike went to day hospice and I went to bed, I struggled to get to sleep because I find it difficult being in the bed alone and all sorts of thoughts of what the future may hold go through my head on a Wednesday when Mike is at Willen and I am at home alone. When I got up Hannah had gone out and left clothes, shoes, the ironing board, iron, hairdryer, straighteners everywhere, none of it had been put away so I just looked at it and burst into tears again. When I picked Mike up he managed to make me feel incredibly guilty for sleeping and not spending the day tidying Cameron's bedroom (I actually think that Cameron should be tidying his own room). I then made the mistake of saying that I felt a bit headachey where I had been asleep and he went off on one saying " you know how I feel now, when i'm asleep you wake me up for meals and medication and to tell me nurses are here", not five minutes earlier he had been moaning that the nurses don't care anymore and don't visit him anymore - I give up! The minute I walked in the door there was a phone call from the school to say that Cameron was supposed to be seeing the German teacher to do a vital piece of coursework and he hadn't turned up - does anyone want to play the game here???

Today is a new day - lets see what joys it brings????

Mike did prove me wrong yesterday and was very awake all morning. I took him up to the bank in the wheelchair, I never realised how up hill High Street is before, but when you are pushing a wheelchair you can really feel it working your muscles. When Mike was first ill he went through a stage of thinking that he recognised everybody, (steroids we think) he found it quite comforting when he was in hospital because he felt quite secure thinking that he knew so many people. We are now back to him thinking he knows everyone again and he gets really frustrated when he asks me who someone is and I haven't got a clue because I have never seen them before.

We picked Hannah up from work and went for our Tuesday night McDonalds, he was well behaved in there yesterday and not outspoken at all. When we came home he watched A&E one programme after the other for what seemed like hours until I went to bed.

I can't believe it is Wednesday again already, back to waiting for the "fat bottomist" and then Mike will be going to day hospice.

Mike has decided to take on the task of sorting Cameron's bedroom. He spent several short bursts of time in there with a black sack yesterday. I found it quite amusing that last night he made Cam sleep on the sofa so he did not mess up what he had already done - Mike has obvioulsy not been in the real world for longer than I thought - I have spent years clearing up after him and the kids for it to be messed up again in no time.

After Mike had such a wakeful day yesterday I am expecting him to sleep a lot today, although he will probably prove me wrong. He does seem to be feeling quite well at the moment though so we are appreciating the good times.

We had a really stressful afternoon with Chelsea playing Blackburn, when Blackburn equalised and the match went into extra time I thought Cam was going to cry. Thankfully Chelsea did score again so there wasn't any tears to mop up there.

I have had very little sleep last night, we were chatting until 2.15 am, I will never have to live with the fact that things went unsaid though because we always tell each other exactly what we are thinking, we always have - just sometimes now Mike can't remember things for the morning so we have to talk about them when they are in his mind.

Mike had a good day yesterday, he was awake much more than he normally is on a Saturday and even came down to the shop and served four customers in the afternoon. He also chatted to some customers that he hadn't seen for ages so he was in quite good spirits.

In the evening he wanted to tidy Cameron's bedroom and kept trying to get me to help him. I had worked thirteen and a half hours with only a twenty minute break yesterday and the last thing I felt like doing was tidying bedrooms, so that didn't happen. I think his room is past the point of tidying anyway we would be better getting a house clearance company to come and sort it out.

We had a dispute about what we were going to watch on the TV, he said I could chose only one thing because he wasn't watching rubbish all the evening. I reminded him that some evenings I have to watch hospitals or CSI's the whole time. In the end I went to bed to watch what I wanted and promptly fell asleep - Mr kind and considerate Mike then woke me up saying "I thought you wanted to watch this". I give up ...........

I don't know whether summer has arrived or my hot flushes have come back, but today is the first day this year that I have sorted the papers without my fleece on.

Mike slept the whole day yesterday, only getting up in time for dinner which he then decided he didn't fancy after all. He chatted to Emma on the phone and later spoke to his mum too, he seems to have been asleep every time I have spoken to her recently. He did have a tense feeling in his face which is normally the sign that he is going to have a seizure, but Cameron and I fell over each other trying to get to the kitchen to get him medication to stop it - in the end Cam got the tablet and I got the water and we were successful in keeping it at bay.

Mike was a bit down in the morning as three people that he has been to day hospice with have died this week. Once again his attitude has amazed me, he said that you have to resign yourself to the fact that if you go to a hospice that is where people die. I sometimes wish I could have his attitude but I find it impossible. He does get cross with me when I get emotional about his illness but sometimes it is very hard to deal with every minute of the day without getting upset. He has asked me what I want for my birthday and I told him that I want a miracle, he says that I have already got one because "he has passed his sell by date already". I do think that cancer does give it's sufferers an inner strength as I could never believe how willing to fight my mum became after her diagnosis but it doesn't prepare the carers in any way.

Hannah - our guide for the day!

We had a really good day at the zoo yesterday. Mike saw all the animals that he has been saying that he wants to see over the last few weeks apart from baby elephants. Nicky and Jim went to Whipsnade last week and say there is a baby elephant there so Mike wants that to be his next trip now. It was nice to spend the day together as a family, we laughed a lot and have always said that laughter is the best medicine - I have often thought that if we couldn't laugh I don't know what we would do.

Mike wanted to do the safari drive again in the afternoon, a third of a way through he fell asleep and slept until we got home. We had only been home about five minutes when the district nurse arrived and started asking him questions about his swollen hands etc, he was really disorientated and looked at her like he had never had swollen hands, when a couple of weeks ago they were the most important thing in his life. When she left he went to bed and slept and only woke up for his medication after a lot of persuasion from me.

Yesterday was a good day. Mike behaved himself when the nurse came to take bloods, and she found a vein first time which is a bit of a result as it has taken several attempts to get any blood out of him lately. He went to day hospice yesterday and I slept for three hours, I don't know that I achieved a great deal from it though because I was much more awake in the evening so went to bed later and have struggled to get up this morning.

We are going to the zoo today, I don't know who is more excited Hannah or Mike, anyone would think that they have never had a day out before. Cameron asked me to get him up at 7.00 am, we are not leaving until 10.00 am but he says that he needs to get up and get himself sorted - I am unsure what this means!!! It will be nice to have a "normal family day" today as sometimes our family seems anything but that.

We had quite a good day yesterday. Mike got up and decided he wanted to go food shopping and thankfully Hannah was at home and happy to come too. Food shopping is impossible without three of us now. It seemed to take forever but at least now we have got food in the fridge - how long it will last with Cameron and Mike having their evening nibbles I do not know.

Mike slept for a couple of hours in the afternoon but got up for dinner and stayed awake all evening. He came to bed at a reasonable time so we had a much better night too.

He is going to day hospice today, he missed it last week because he wasn't well. The phlabotomist comes to take bloods before breakfast today, I hope he behaves himself because when he talks about her he calls her "the fat bottomist", I dread him saying it to her face.

Mike felt much better yesterday, we went out in the afternoon and then met Hannah from work. He does make me laugh when he is in the wheelchair, I am sure he forgets how far I am walking - he says "we'll just go for a little stroll along here" while he is sat down. I am very happy that he did feel well enough to go out again though because every time we have a set back the reality of the situation really hits us.

Hannah helped in the shop yesterday morning before she went to work, but she is on holiday now and now Mike is feeling better we plan to go to the zoo on Thursday. I have got a bit of a cold, but not mentioned it to Mike, Hannah made the mistake of saying she felt unwell the other day and got a major lecture from Mike about not knowing the meaning of not feeling well - I have told her to remember to think twice and say nothing if she wants a quiet life.

A slightly better day yesterday, although Mike slept most of the day and didn't eat breakfast or lunch. He got up for about half an hour in the afternoon and continuously criticised what I was watching on the TV in the hope that I would tell him to change it, I just ignored him and carried on watching it, so he went back to bed (I do feel he behaves like a spoilt child that isn't getting their own way sometimes). He got up for dinner and by the time I had gone through to the kitchen to bring it in to him the TV had changed to Holby City - This time I chose to say nothing and just let him get on with it, but I would like to be able to have a meal occasionally without blood and guts on the TV.

He was awake all the evening. I have noticed recently that he repeats things quite a bit, this became more noticeable when he woke me up in the middle of the night to tell me things that he had already told me several times in the evening. We did have quite a long chat in the night, which wasn't so bad because the shop closes at 10.30 am today and there is a possibility I may catch up on some sleep at some stage.

Mike was really down in the dumps yesterday lunch time, he was complaining that all the medication he takes makes him ill, it took me some time to remind him that he takes the medication because he is ill and they are supposed to be relieving his symptoms. I got very concerned when he started saying "what would happen if I didn't take this one?" in the end I had to be quite firm and make him take them with the agreement that I will speak to Liz at Willen about his concerns on Tuesday.

Gill and Pete came last night, Mike didn't want our traditional KFC, but requested Pizza. He did seem to eat quite a bit, but has suffered for it all night. My concern is that he says that if eating makes him feel that way then he isn't going to eat. I will have to think of something to tempt him today. (Thanks for the card and flowers!)

Hannah is on holiday from work for a week now, although she is doing four hours extra tomorrow. (she realised quite quickly that it was double pay on a bank holiday!). We do have plans to do some family stuff all together this week and just hope that Mike is well enough.

The steroids seem to be helping with Mike's headaches, but he is still feeling sick most of the time. He did manage to eat some rice last night but hadn't eaten anything the rest of the day, he has frequent, long lasting bouts of hiccups which he says are both annoying and are beginning to hurt him as they are quite violent sometimes.

Both of the kids were out last night so we had a peaceful evening, although it does make me feel how alone I am going to be.

The shop closed at 10.30 am yesterday and I intended to catch up on some sleep, but I am finding it really difficult to at the moment, it is like having a new baby, I am always semi conscious and aware of his every move - it always seems that the minute I try to sleep Mike starts moving about.

Mike continues to feel sick. We haven't had a very good night, he has been in and out of bed several times and I feel totally helpless because there is nothing I can do for him. We keep trying to convince ourselves that it may just be a bug and not related to the illness at all, but then we have to be realistic too.

The day has not got off to a very good start, I started the day with two paper boys off which I did have covered by an old paper boy of ours, but he phoned and let me down last night, and I have got up to a message on the phone to say that another one is going to be off ill. So even before the papers have arrived I know that i've got three rounds to do - Hannah has agreed to help me with the two that she knew about so I may be able to get her to help with the third too, but she is working from 11.00 am today so I will have to be extra nice to her and offer her a lift to work.

Mike had a bad day again yesterday. He felt sick whenever he moved and had a headache, Liz at Willen spoke to the dr's and it was decided to increase his steroids again. He even asked to take what he calls his "yucky medicine" for his headache.

It all seems very real at the moment, because of the extra anti sickness drugs he is sleeping even more, but at least when he is asleep he is not in pain.

Things can only get better!!!!

Yesterday was a nightmare day. It started with the papers arriving late which puts everything behind. Then I was sat in my office with my back to the window thinking that the noise I could hear was pouring rain but when I turned round it wasn't raining at all. I went next door into the stock room and water was pouring through the ceiling - Cameron had started running a bath and forgotten about it - when I asked him to come down to help me move stock out the way and help clear it up he grunted like it was a major inconvenience. (who caused the problem??)

Mike wasn't well yesterday, he woke up at lunch time feeling very sick. I gave him anti-sickness tablets but it didn't seem to shift. I spoke to Liz at Willen about it and she is going to follow it up today. It is day hospice day but it is very doubtful that he will go - that means I won't get my uninterrupted sleep. I am beginning to get very stroppy because I am so over tired - we did have a good day on Sunday when we went to Reading to visit Mark and Nicky for their birthdays but I am really suffering for missing my Sunday afternoon sleep now.

The blog is now being read in New Zealand too. I was really pleased to get a comment from Suzanne and Colin yesterday.

As expected Mike slept a lot yesterday and behaved while I was out at carers. He got up just as I was closing the shop at 5.15 pm. He was really chatty (his speech is very good at the moment) and we even talked about the fact that I am fed up with watching his rubbish on TV, after a little bit of muttering under his breath he turned over and we watched some "normal" stuff.

I am having problems with my paper boys again, I hate the school holidays, they think they have got all day and that everyone else has too, they forget that the majority of people would still like their paper with their breakfast before they go to work. I have toughened up and given two warnings in the last week and taken one round away from someone who is getting later and later every day. Mike used to do the hiring and firing and I suppose it is the thing that I have found the hardest to take on but I realise that I need to get a grip of them to avoid my delivery service (which we are very proud of!) being affected.

We had a really good day yesterday. Mike was awake from lunch time until bed time, which is the longest in a while. I have given up with the idea of sleeping now and hope that if I don't think about it the need to do it will go away.

Today is the first day of Judy's holiday which means that the early mornings are going to be even harder. I have got up extra early to be organised but the papers haven't arrived yet so it hasn't helped very much.

Today is carers, so lots of tea and cake to look forward to, after Mike's wakeful day yesterday I think I can safely say he will sleep (and behave himself!) while I am out today.

I can't believe it is April already, it seems like it's only a few weeks since Christmas. Does everyone feel like that or is it just me losing track of time?

As it's the 1st April firstly I need to say:

Happy Birthday to Nicky & Happy Birthday to Mark
Hope you both have a good day and we hope to see you soon.

Mike slept all day until about 6.00 pm yesterday. The befriender came in the afternoon and Cam and I went out. We didn't do anything particularly exciting but Cam was happy - we went to buy him a new chain, as his had broken on Friday and all four of us have worn crosses on a chain since Mike's diagnosis and we all seem to have a bit of a fear that somethings going to go wrong if we havent got them on. (it's a long story but Cameron calls his cross Hope, which I think is really nice). We bought ice creams (not from our shop!) and went and sat by Willen Lake. When we got home Mike was still asleep and when he did wake up he didn't even know the befriender had been. (we are looking for a new word for befriender because it makes him sound really vulnerable and that he hasn't got any friends and we have to rent one!)

Both the kids were out last night and I spent another evening of watching the same rubbish on the TV. Mike records the same programmes and watches them over and over again but doesn't remember seeing them - it is beginning to drive me mad. I have to be really careful what I say though because he gets a bit upset if I complain that i've seen it and he can't remember it. My motto is "think twice and say nothing" I know it is the illness that makes him like this because he used be the one that complained the most about repeats on telly, I just figure that is not worth arguing about and just appreciate that we are sat having valuable time together.