Mike had an unsettled night and had been given medication to sedate him in an effort to give him some relief from hiccups. He slept most of the day and apart from a couple of chunks of melon, a spoonful of jelly and ice cream and a few spoonfuls of soup he wasn't into eating at all yesterday. Jean and Eddie visited in the afternoon, he did eventually wake up but his speech is not good and he didn't do a lot of talking.

As the evening went on the hiccups returned. When I left last night Mike said he is definately coming home tomorrow and he is not putting up with it anymore. He really is not well enough to come home, he says he can't cope with the hiccups and would rather be knocked out so he doesn't have to put up with it. I really worry that he will tell the dr that he is fine to go home and I will have another weekend of panic trying to get hold of dr's etc if it all goes horribly wrong. Liz always tells me that they (medics) are aware that patients with brain tumours can't reason etc, but I do worry that in short doses Mike is so convincing and they may believe him.

Sandy was a superstar yesterday, I was really down in the dumps and she still managed to make me laugh, she also gave me the opportunity to have a cry, I really beat myself up when I get upset in front of other people but just lately I make a bit of a habit of it with Sandy - thanks for being there with your box of tissues, and also thanks to Claire for the cup of tea and the flap jacks. x

Yesterday was a horrible day. When I arrived at Willen Mike greeted me with "I am not staying here more than two days" and got quite nasty when I tried to explain that they were trying to help him feel more comfortable. The day didn't get a great deal better, the hiccups continued, although there were occasional breaks from it and in the afternoon he had a fit. He is now paranoid that everything gives him hiccups, he won't eat anything too hot, too cold, won't speak, won't move and the icing on the cake is he wouldn't kiss me goodbye last night in case it started it again - I got really upset and sat in the car park and had a good cry before I drove home.

Looking on the bright side Cameron fixed the Sky last night so he was like all his Christmas' had come at once, although he was a bit fed up that he only managed to do it in time to see the last couple of minutes of the football.

Sorry the blog is late . . .

The good news is Mike hasn't had a bleed and was admitted to Willen not Milton Keynes General, I must admit the apprehension about him going back into hospital overtook the fears about his illness yesterday.

He seems to be quite settled and accepted the fact that he needs to be in Willen, they are making lots of changes to his medication in a hope that they can control the hiccups.

Both the kids stayed in last night, Hannah went out for about half an hour but came back saying she really was not in the mood and wanted to be at home. Disaster struck, for Cameron at least when our sky box wouldn't work, I told him it wasn't at the top of my list of priorities right now - I don't know how he managed to get through the night.

Yesterday was another lousy day. It appears that Mike has had an internal bleed, blood tests were taken yesterday to confirm it. We had a steady stream of nurses here and the dr from Willen rang last night and advised me to up Mike's medication in an effort to at least let him have a decent nights sleep - it didn't work he slept for a total of four hours and we have been up watching the clock tick ever since. The dr has told me that if it is a bleed then he will have to go into Milton Keynes Hospital today (you can imagine how apprehensive we are about that, with the very limited visiting times and the fact that he is so dependant on me now), if it isn't a bleed they are looking at taking him back into the hospice to try to settle his symptoms.

Hiccups continue . . . Mike was very sleepy until about 4.30 pm yesterday afternoon and when he first woke he was hiccup free ( we now call them peanuts not hiccups, Mike said it by accident but we all decided that hiccups is a bit like a swear word here so peanuts is much better). He had only been awake about half an hour and they returned, followed a couple of hours later by the very upset stomach. It is so distressing for him, and I feel so helpless, he asks "what can you give me now for my hiccups?" thankfully I keep a record of his drugs as I give them to him so am able to see what he can have, but nothing seems to be working anymore.

He was obviously lying awake when my alarm went off this morning because when I turned it off he leant over and said "don't go", I stayed with him for an extra ten minutes but then had to go to do the papers, he looks so vulnerable and I feel so helpless sometimes. He is still hiccuping but has gone back to sleep now - I will speak to Liz at Willen today, but don't expect any miracle cures because they tried everything when he had them a few weeks ago.

Dr arrived at 11.45 pm and gave Mike an injection. He explained that the medication that he is already taking is the most effective but they were going to try something just to see if he could have a break from it long enough to get to sleep. They gave him haloperidol, I knew that it would make him drowsy as he took it in tablet form when he was having his chemo as an anti-sickness and it used to knock him out then. Thankfully eventually he did go to sleep, propped up on cushions from the sofa as he was afraid to lie down in case it started again.

After a lot of consideration about what the best thing to do would be I phoned Judy (knowing how I would feel if someone rang me at that time when I needed to be up at 3.30 am) - she told me that her and David would do the papers and that my priority should be Mike, so I have managed to get some sleep, although most of the night was spent just looking at him. Thanks Judy and David, you are stars x x x x

I thought I would do a second blog today, as things are not very good and I can see that I may not get a lot of sleep tonight and therefore not be up quite so early blogging in the morning.

Mike has had a very unsettled day today. He woke up feeling "better" this morning, but the upset stomach soon returned and so did the hiccups. The medical support today has been brilliant, we have had the hospice at home nurse here this morning, they have phoned twice and the dr from Willen has phoned too to tell me to adjust his medication. Unfortunately, however much his medication has been increased the hiccups will not settle and he just sits on the bed with a bowl on his lap waiting to be sick. He keeps telling me that he would feel better if he was sick, but it doesn't happen. I phoned the twilight nurses because he just can't settle tonight and is getting himself in a state and they have passed it on to MK Doc and I am now waiting for them to call.

Both of the kids are out this evening and I feel very alone.

Mike wasn't good yesterday, he had constant hiccups and a really upset stomach. He has been up a couple of times in the night. I spoke to Willen to double check what I could give him for his stomach and Liz told me she would get hospice at home to phone me last night to check that everything was ok. Mike was asleep but I waited for them to call, but as far as I was concerned they didn't, when I came down this morning they had been trying to phone the shop and had left two messages on the answer phone.

I am sorting papers but up and down stairs keeping a close eye on Mike, we will see what happens today.

Mike had a very sleepy morning - he didn't feel good when he first woke up, he had a headache and hiccups. I woke him to give him medication at lunch time but he went straight back to sleep.

Jean and Eddie came yesterday armed with home made soup (yum!). I slept for a couple of hours in the afternoon while they entertained Mike which was good, and Eddie sorted out the garden too. I had got to the point of being desperate to sleep. Recently my only chance to sleep has been Sunday afternoons and that doesn't even give me the opportunity to sleep without an alarm any more because now it gets dark early, and I suppose I am a worrying mother I pick Hannah up from work because I don't like the thought of her waiting for a bus.

Mike has already been awake with hiccups this morning, they are really distressing to watch so I can't imagine how he feels.

Mike had quite a good day yesterday - he went to day hospice but was very tired when he got home and went to bed, he got up for his dinner but then went back to bed (a combination of he didn't want to watch the football and the fact that he was worn out).

All my negative feelings of Christmas made me do something about it yesterday. Hannah was off so we went shopping - I was amazed at what we achieved, we managed to do most of it and apart from a couple of odd ones i've only got Hannah and cameron to do.

The papers are late arriving again this morning, we have just had a discussion about starting later in the mornings, by just starting half an hour later a day I could gain three and a half extra hours sleep a week - heaven!

Sorry the blog is late, we didn't have a very good night and had an even worse morning.

Mike was quite good all day yesterday but as the evening went on I got a little worried about him, I couldn't put my finger on what was wrong, but he just wasn't right. He woke me at 12.30 for medication for his headache and then asked if we could sleep with the light on - this really unnerved me, he just said that he didn't feel right. We slept with the light on, well Mike slept and I just watched him for ages. I had already had problems getting to sleep when we first went to bed and getting back to sleep was no easier.

I woke at 3.30 am this morning with a migraine and was promptly sick. I went down to do the papers but Judy and David sent me back to bed so I set the alarm and got up in time for Mike's breakfast and medication.

While I couldn't sleep last night, in my hours of boredom I wrote a poem, I thought I would share it with you on the blog. I cried writing it, but it is how I feel and sometimes a good cry makes you feel a bit better.

Why is everyone so jolly?

Why is everyone so jolly?
shops are filled with trees and holly
people buying gifts and a card
I am finding Christmas oh so hard.

Parties, presents, lots of fun
it's all you hear from everyone
we just plan one day at a time
not feeling happy seems like a crime

Every day's a special day
this illness makes you feel that way
memories, they come for free
not wrapped up under a Christmas tree.

Traditions and what we should feel
makes this whole nightmare very real
we have our hopes, we have our fears
we have many memories of happy years.

Sometimes I wish that time could stand still
I can cope with today even though Mike's ill,
tomorrow always fills me with fear
and then it's Christmas and a "happy?" new year.

Mike was a real sleeping beauty yesterday (although I don't remember sleeping beauty snoring quite so much). He woke up at about 6.30 am, at which point he decided to empty the whole contents of his bedside cabinet all over the bed. When I went into the bedroom he started saying "you need to put this somewhere safe, and you need to put this away" - I actually told him that I needed to do nothing at that moment in time and told him what he needed to do and left him for a little while. I then went back and helped him put it all back in the cabinet. (pointless exercise!)

He had breakfast and went back to sleep, he woke briefly when the nurse came and briefly to have lunch and medication, he then slept right through the befriender coming and me going to carers and I had to wake him for his dinner and more medication, he then went back to sleep again. He came to life at about 8.30 pm which is really helpful when I want to be winding down then.

I was glad I got to carers - Sandy (family support worker) has always said that she wishes she had a magic wand that could make all my problems go away. Yesterday she came in with a very fancy magic wand that flashes and makes a noise (her boss bought it for her) - it hasn't made my problems go away but I did think it was funny, Sandy has a very special quality that however rubbish I feel she always manages to make me smile and I really appreciate that.

The day did get a bit better, the nurse came at 7.00 am and sorted Mike's syringe driver and then came back at 11.00 am to reload it so we are not out of our normal routine. Mike has been getting a lot more headaches over the last couple of days, so the nurse has told me to keep a record of when they are happening as his medication may need changing again.

Today is carers, Mike knows he is having a befriender today and I have been quite firm about the fact that it is happening this week - she only actually needs to stay for just over an hour because Cam will take over when he gets in from school.

Yesterday was an ok day. Mike was quite awake in the morning and so we tried out the new bath board and I managed to shower him without getting too soaked myself or flooding the bathroom as I thought may happen.

I went to bed at 8.00 pm last night because I was exhausted - Mike had a seizure at 10.00 pm, but Cameron dealt with it and I only knew about it when it was all over. Mike then woke me up at 1.00 am saying "you've had a really nice long sleep" - at which point I was awake obviously and really struggled to go back to sleep, I got a bit cross and he then got a bit upset because he said didn't mean to wake me up - what a nightmare.

This morning has already started off as a bit of a nightmare - Mike got up to go to the loo, caught his arm on the door and has pulled the butterfly for his syringe driver out of his arm. I have phoned Willen for advice and need to call back at 7.30 am to organise for hospice at home to sort it. Our routine of 11 am changes goes to pot again!

Yesterday was an odd day. Mike was quite unsettled, he was very sleepy in the morning but got up to have lunch and tried very hard to stay awake in the afternoon because we had a new befriender coming to meet us who is going to be available when Tony isn't - but about twenty minutes before she arrived he went back to bed - She had phoned me earlier in the week and the whole idea of her visit yesterday was that she was going to tell Mike that she comes with her book and newspaper and is happy to sit and read, she doesn't need him to entertain her but that was a bit of a waste of time, but it did give me a chance to show her where things are and she also met Cameron while she was here.

Mike had problems with his eyes yesterday, he called me through to say that he couldn't see with his glasses on, I told him to take them off and just relax a bit - he now thinks that he can see better without his glasses. He was on quite good form when the nurse came because she has been saying all week that she really needs to get her eyes tested, so he offered her his glasses to save herself some money (bless him!)

I am stressed out with teenagers at the moment, I know this would probably be a testing time of our lives if everything was normal, but I am totally fed up with having to re-visit the same issues on an almost weekly basis. After I had given Mike his last medication I went to bed, I really resent crying over kids unreasonable behaviour but I seem to do it rather a lot lately. It makes me really mad that this time with Mike should be really special and we should be making the most of it.

Mike had a very sleepy morning, he wasn't really aware of the nurse coming to change his syringe driver. When the nurse had finished I told him that I was going to go to bed for an hour, twenty minutes later he woke me up saying "my mum and dad are coming this afternoon, don't you think you should get up", I told him that I had plenty of time to sleep before they came but he wouldn't have it and so the easy option was to get up.

I had only been up a couple of minutes and he decided that he wanted me to change his pyjamas for him, so I did. I picked up the ones that needed washing and hadn't got as far as the kitchen with them when I heard a very loud "oh" - I rushed back to the bedroom to find that he had picked up a glass of water with his weak hand and spilt it all over the clean pyjamas and the bed. I actually amazed myself how I just said "never mind, we'll change them again and i'll sort the bedding out".

I really wish I could get my head around how he feels when people are coming, it is not just the befriender that he feels he needs to entertain, he feels he needs to entertain everyone. The water incident happened because he wasn't properly awake and was in a rush to be up for when his mum and dad arrived. - I don't think that he understands that we all know he is ill and appreciate that he won't always feel like being up and "entertaining" us. It really winds me up because he uses so much energy trying to be ""normal" when people are here that he is really lousy every time visitors go home because he has exhausted himself.

The hiccups continue.... Last night they were much worse again, with hiccups on hiccups and lots of times I thought he was going to be sick.

Mike went to day hospice yesterday, he had a seizure while he was there and his speech has not come back to the level it was at yet. Last night he was struggling to remember words and his speech was generally slurred, his mobility was not good either.

Our live's rollercoaster continues, every day things change, sometimes good, sometimes not.

Mike had a very unsettled day yesterday. The hiccups are a real problem again, he got to the stage that he was asking me every couple of minutes when he was due for another tablet to try to stop them. In the end I set the alarm on my phone and told him that when the alarm goes off he could have one, he then kept asking me "is the alarm working, because it hasn't gone off yet" - it reminded me of taking the kids on long journeys when they were little and them asking "are we nearly there yet?" He has been up in the night a couple of times but we just can't seem to settle them. Liz from Willen came yesterday and looked into the dose of everything he is taking and nothing can be increased any more to try to stop it.

Mike intends to go to day hospice today, but we will have to see what frame of mind he is in when he gets up - Obviously he finds it almost impossible to speak when he is hiccuping and that's what he goes to day hospice for. He has also been told that they would give him a bath or a shower today and he has very firm views that he is not going to let a nurse do it, and that we cope well enough at home. He's got himself in a bit of a state about it and I have told him not to worry and that no one will make him, but it was the topic of conversation at least half a dozen times last night. Sometimes people innocently say something to him that means I have to live with consequences for ever more!

Yesterday wasn't a very good day. Mike woke up complaining of a headace, I gave him something for it, but it didn't help so an hour later I gave him the second option. I checked the syringe driver and noticed that it had run out at 7.00 am when it was not due to run out until 11.00 am. I rang Willen and a nurse from hospice at home came and changed it. I am a bit fed up that it now means that the routine that we had got into with meal times, medication, Mike's sleeping and when I can spend time working around the nurses visit has all gone to pot. I feel really guilty moaning but although Mike is my number one priority I am trying to run a business too.

I didn't go to carers yesterday, Mike obvioulsy was not happy about the thought of having to entertain the befriender and was not willing to listen to the fact that he didn't need to. I haven't felt 100% for a few days now and I told him I would stay at home with him, as it happens he slept right through the afternoon and wouldn't have noticed if I was there or not.

We had a bit of a heated discussion last night, it happens every now and then, so many things seem insignificant in the big scheme of things but lots of insignificant things add up and make me feel like I am ready to explode. I know the majority of his behaviour is governed by his illness but sometimes he says things that make me feel that he thinks I don't care - this is what happened last night so I told him a few home truths and then we both had a good cry.

He told me that we have always had a marriage with no secrets, and he feels that I didn't tell him how ill he had been (which I had, loads of times) and that i'm keeping something from him. I did tell him how ill he was and yes I have kept the prognosis from him, because maybe selfishly I know that if he knew what I do he would give up and it would all be over very quickly - he might be a pain in the neck sometimes, but I love him and want to keep him as long as I possibly can.

Mike had a good day yesterday. He woke early but went back to bed at 10.30 am and slept until 3 pm, the nurse came to do the syringe driver and I woke him at 12 for him to take medication but he then continued sleeping. Gill and Pete came last night and Mike was on good form when they were here, they arrived at a really good time because Cameron and me were getting incredibly wound up by Mike's demands and opinions (neither of us could do anything right yesterday afternoon) and their arrival gave him something else to think about.

I was woken up at 3 am this morning by Mike getting really anxious saying that someone was walking up and down outside. I was not pleased as waking up at that time means there is no point even trying to go back to sleep. However hard I listened I could not hear anyone but in the end he managed to make me feel really nervous about going downstairs on my own in the dark to start work (which has never bothered me in the past), he said he would come down with me and couldn't understand why I wouldn't let him - my theory was that if there was anyone suspect around I don't know who I would of been picking up off of the floor (probably Mike!) - When I came down I quickly realised what he had been hearing - it was the sound of the wind blowing the leaves up the road - I told him that was what it was and he said "oh yes, that's what it sounded like" - I bit my lip very hard and went back downstairs.

We had an issue about me going to carers too yesterday - he complained that the befriender comes and he has to get up and entertain him, however hard I try (and I know Karen tried on the phone too) he cannot, or will not understand that he comes to just keep an eye on Mike, he brings a book and is quite happy to sit and read he doesn't expect Mike to do anything - I hate it when we have this discussion because he manages to make me feel really guilty for going out for just those two hours a week.

Mike slept a lot yesterday - he slept right through the nurses visit and when he eventually woke up asked me "what time is the nurse coming?". He had a few problems with numbness down the right hand side of his face, normally he gets numb around his mouth when he is about to have a fit, but yesterday it was more extensive but thankfully no fits - once he had mentioned it to me I was on a knife edge waiting for it to happen.

His memory wasn't good, he went back to sleep after lunch and when he woke up he couldn't remember that he had had lunch or his medication, I had to remind him what he had and then he was ok.

I forgot to thank Sandy my cousin yesterday for the lovely flowers she sent, she was a massive support to me when my mum died and has always been there for me during Mike's illness, we email regularly and she always manages to cheer me up.
Thanks x

Mike slept more during the day yesterday but was awake and on good form in the evening. We seem to be settling into a bit more of a routine now. I still get up at 3.45 and do the papers then work through until 8 am with the monitor on so I can hear him, then at 8.00 am I go upstairs and do the first lot of medication and breakfast. I then stay upstairs most of the day, I do some work on the lap top - I am so lucky to have such capable staff that only call me if they really need me which allows me to have this special time with Mike.

He does have an increased numbness in his right hand, he sometimes sits and looks at it like he is checking it is still there and other times he bashes it with the other hand seeing if he can feel it.

I'm still wimping about my flu jab, my arm is really sore and I feel a bit achy this morning, i'm not going to mention it to Mike though because his standard response to anyone feeling unwell is "you should try having a brain tumour" - which puts things in perspective I suppose.

Mike had quite a good day yesterday, he slept all morning and Jean and Eddie came in the afternoon. I had a few problems with his memory in the morning, Eddie had told me last week that they were coming first thing in the morning but since then Jean had told Mike different but he couldn't remember what was different - I asked him if they were coming for lunch? coming for dinner? or coming for both? he didn't know. I said i'd phone them, but he got cross and wouldn't let me because he said he should have been able to remember - in the end the only thing I could do was be prepared for every eventuality - they arrived mid afternoon and stayed for dinner.

I had my flu jab yesterday, Mike felt a bit hard done by because he didn't get one - surely he's had enough needles in him recently! He couldn't understand why I had one, but when I reminded him that if I had the flu and couldn't do things for him he'd have a few problems he accepted it.

I had a delivery of Christmas stock yesterday and have drawn a plan of what I want to do with the shop window, I find it incredibly difficult to think as far ahead as that, and even more difficult that people are talking about how they are going to celebrate it. I will always remember last Christmas - the first Christmas day that it has just been the four of us, and we stayed in our pyjamas all day so Mike didn't feel he had to make an effort getting dressed, it was lovely, but Christmas is weeks away and I daren't even think about it.

Yesterday didn't get off to a very a good start. Mike woke with hiccups, which seems to becoming quite a regular thing now. He was very determined to go to day hospice and he got up and I helped him wash and dress and we sat and watched TV for a while. He got up to walk when we were ready to go and his right leg just buckled under him - it has always had a weakness but nothing like this - he has been saying over the last few weeks that it is just getting really numb now, dr's have said that it is part of the illness.

When he arrived at Willen he was told that he was the only one going this week because all the others had hospital appointments or were ill - Mike quite liked the idea of being given full attention but he got very tired during the early afternoon and I got a phone call to say that he wanted to come home. He was very disappointed that his "friends" hadn't been there and wasn't willing to listen when I tried to explain that he hadn't been for weeks when he was in hospital and first in Willen (I don't know if he still has selective hearing (like he always has), or whether he really can't grasp things like that anymore).

I ran around doing lots of things that I needed to do while he was out but found it really difficult to settle.

If the blog had sound you would probably hear me shouting and screaming. I am so frustrated with Mike's behaviour yesterday, but not expected to have an opinion or comment about it.

We still have no system for the nurses coming to change his syringe driver. It is due to be done at 11 am, when no one had turned up at 11.45 am I rang the district nurse to be told that hospice at home were supposed to do it today but the district nurse came immediately to do it, at just after
12 o'clock hospice at home arrived to do it - this may seem like a little thing, but in that hour I have had Mike getting more and more restless and blaming me. (when they do arrive Mike is lovely to them and tells them that it's me that has been worrying about it!)

Eventually we had lunch and I had already told Mike that I was going to have a sleep in the afternoon, but when I told him I was going to bed he said "before you go can you go out in the garden and collect the seed heads from the marigolds?", you can imagine what I said, but he then sent me on a guilt trip telling me that if my mum was alive she would be disgusted that I hadn't collected them (If my mum was alive she would have told him a few home truths too!). Mike continued to nag about it all day and eventually Cam was sent out to do it last night in the dark with the security light on.

Cameron turned the TV over to watch Chelsea, which has always happened here - Mike went mad, he needed to watch the Simpsons (which has been and will be repeated a million times). He sent Cam to watch football in our bedroom - I very calmly said to Mike "maybe Cam wanted to watch the football with his dad", then World War III broke out - he said that no one cares about him, TV is all he's got - I decided that the best option was to go to watch football with Cam and let him watch what he wanted. I feel a bit like a punch bag at times, I have been totally devoted to Mike since I was 19 and when he says I don't care it really hurts.

Mike is going to day hospice today, I did have plans for having some me time, but Mike has already tried to tell me what I have to do in the time he is not around.

Mike had a sleepy morning yesterday, he slept through Liz coming and only briefly opened his eyes when the nurse was changing his syringe driver. He was still asleep at lunch time and I had to wake him for his medication but he went back to sleep.

The befriender came to sit with Mike when I went to carers yesterday, I didn't think that he would even notice, but I left a note telling him where I was and that Tony was in the living room. When I got home Mike was up (he thinks that if people come he has to entertain them, this is why I struggle when visitors come, because he wears himself out and makes himself ill). Mike immediately started on at me asking me why I was so late, I wasn't late at all - Carers finishes at 4.00 pm and I walked through the door at 4.15 pm. Tony made a quick exit, obviously didn't want to be involved in a domestic.

Mike was awake all evening but the hiccups returned and he had a headache - so he had a lot of sedating drugs last night and came to bed quite early and slept like a baby.

Mike had a good day yesterday, he didn't sleep as much as he has been, but is up now complaining that I made him go to bed too early. I didn't make him go to bed, he told me he was exhausted and decided he was going to bed - it's a bit like being in a battle you know you're not going to win so it isn't even worth trying any more.

Liz from Willen is coming this morning and then the district nurse is coming to do Mike's syringe driver and then a befriender from Willen is coming to sit with Mike while I go to carers - so today is taken care of, it will be bedtime again before I know it.

Hannah got up to help with the papers this morning, thanks Han x

Mike had quite a good day yesterday. He was awake for sometime at lunchtime and then awake from before dinner until bedtime - it was almost "normal".

He woke up at 3.45 am this morning with a headache, I have given him medication and he has gone back to sleep. I am back to using the baby monitor for when I am downstairs, it alerts me if he is restless and he knows that he can call me and I will come.

I am going to try to get a sleep this afternoon. I have found I have had to be quite firm with Mike about when things are going to be done, he has no understanding anymore about the fact that I get up at 3.30 am and need to go to bed early. He tries to put things off like being washed until later all the time, so I felt quite heartless but have had to tell him that I have no problem doing anything for him but things do have to fit in with me. He was a bit quiet for a while after this discussion but he seems to be fine with it now.

I spent some time in the shop yesterday, I find it really difficult when every other person that comes in asks about Mike. I know that people are genuinely concerned and probably I would feel just as fed up if people didn't ask at all, but somehow saying it out loud makes it all seem much worse. I know when Mike was first diagnosed I found it impossible to say "my husband has a brain tumour" and now I am struggling with the fact that people presume that because he is home everything is better and we will all live happily ever after, when obvioulsy this isn't the case.

Sorry the blog is later than normal again, today was my last chance for staying in bed - Eddie did the papers this morning. Jean and Eddie are going home this afternoon, they have been a great help and support while they have been here.

Mike had two small focal seizures yesterday, but we have been told by dr's at Willen that they are going to continue and will never be totally controlled. He slept most of the day yesterday and only got up for a few hours in the evening, I thought that it would mean that he would be up half the night, but he slept all night too. It will take a while to get back into any sort of routine and Mike's illness has always meant that we take each day as it comes and every day is different.

Mike's home, together with a trailer load of drugs. He managed to get up the stairs really well and settled like he hadn't been away. It will take a while to get into a routine but I am sure we are going to cope. Mike may have to learn to do as he is told a bit - he is quite demanding in that if he wants something done he wants it done now (I know from experience that this is part of the condition, he lost his reasoning skills a long time ago), but we need to settle back into a routine that fits in with all four of us, he may have all day but the rest of us haven't.

It was really nice to wake up with him here this morning, it's lovely to have him home.

Mike is coming home today. He went to day hospice yesterday and had a good day, he fell asleep almost as soon as he got back in his bed and slept for a long while, but was on good form again in the evening. I started sorting some of his things to bring home yesterday, he has had lots of presents and cards since he has been in there and so I decided that it would be easier to get most of it home so that today I only have him to think about.

It is an odd feeling that he will be home, it is almost five weeks since he has been here now. Grab rails were fitted on the stairs yesterday, the bathroom door has been changed so it opens the opposite way to give us more space, the bedroom has been changed around so Mike has no obstacles to get into bed and nurses can access him easier - a lot has changed, but a few weeks ago I didn't think I would ever have him home again, I am so grateful to everyone at Willen for looking after him (and me) so well over the past weeks and making it possible for us to have more quality family time together at home.