Mike was in a much better frame of mind yesterday, he didn't rebel at all about being showered and even managed to have a shave. He was much more talkative than he has been in the last few days and intends to go to day hospice today.

I took part in a training session for new volunteers to support carers last night. Christine and I were asked to give honest accounts of what it is like caring 24 hours a day. I hope that it was beneficial to those involved and I feel that I probably gained something from it as well in hearing that Christine's experience is very similar to mine. Sometimes it feels that it is a very lonely existence living with someone with a brain tumor as you lose a lot of that person along the way, and I hope that what we said helps the new volunteers to help others with their caring role.

Mike was in a couldn't be bothered mood yesterday, it took lots of effort on my part just to wash him , he refused to have a shower and struggled a bit with the idea of being washed at all, I tried to convince him that it would freshen him up and make him feel a bit better but he wasn't having any of it. I also thought the fact that Karen was coming to visit him would encourage him to shower but that didn't work either - I never give up though, today is another day and sometimes he's forgotten how he felt the day before so I may have more success with him today.

The plan is for him to come home on Thursday, I think he lost a bit of his confidence by having the seizure on Sunday morning but hope that it will come back over the next couple of days.

Firstly, Happy Birthday to Jean, have a restfull, peaceful day - you deserve it. Jean and Eddie have gone home for a couple of days. I cannot believe how it hits home how things are eventually going to be when I get back from Willen and just the kids are at home, everything seems so quiet. I really struggled to get to sleep last night so I need to try and deal with it.

Sorry to anyone that has missed the blog today, I didn't mean to alarm anyone. Eddie got up to do the papers this morning and I stayed in bed until gone 7 this morning. I totally forgot about the blog and I have no better excuse than that.

Mike wasn't on very good form yesterday, he is understandably a bit down and this morning he had a small seizure which has knocked his confidence. He also feels that the hiccups are returning and so has had extra medication this evening that will make him sleep a bit better. He has struggled a bit with his speech today which is not unusual following a fit, he is aware that it is not good and is speaking very slowly. Gill came this evening and he made a big effort while she was there, he is very tired now so I have left him to have a good sleep.

Mike wasn't as cheerful as he has been over the last few days yesterday. He had lots of problems with the burning sensation in his right leg, he didn't want to go out in the wheelchair yesterday and just stayed in bed all day.

The occupational therapist came yesterday and has measured for a hand rail to go up the stairs, and hopefully we should be able to get him home by the end of next week. Yesterday was the first time that he talked about the fact that he wasn't as good as he was before he was admitted a month ago, and we both got upset about the reality of the situation. I sometimes wonder how we get through each day and am amazed that we have managed to be so cheerful, but every now and again it hits you, we really struggled with saying goodbye to each other last night.

Mike is obviously feeling better because he's moaning. The occupational therapist is coming today to see what we need to do so he can come home, Mike seems to think that he is the only patient in the world and that everything should be sorted immediately for him. This is one of the things I have really noticed with this illness, Mike used to put everyone else first and always given everyone the benefit of the doubt, quite often this has totally reversed now and everyone is wrong but him.

Mike had a good day yesterday, he went to day hospice and seemed to have quite a good time. I went to the city for a couple of hours while he was there, I really struggle with normality at the moment, and the fact that people are happily shopping and I that I am always just on a mission to get what I need to do in as little time and with as little upset as possible.

Mike was really tired by the time I left last night, i'm not suprised because he had a busy day yesterday.

Sorry the blog is late again this morning - Hannah got up to do the papers so I could stay in bed, well done Hannah x x

Jean and Eddie have gone to Karen's for a couple of days so when I came home from Willen last night it was just the three of us, it realy hit home that is how it will be someday. We had a bit of quality time together but I found it really difficult to get to sleep last night.

Mike was good again yesterday and intends to go to day hospice for part of the day today. I am going in to shower him and then will go back after lunch, he will probably be exhausted and sleep the rest of the day, as that is the effect it usually has on him.

Mike was in good spirits yesterday. He is really looking forward to coming home, but is finding it difficult to understand that extra help needs to be put into place first. In his mind he thinks he is exactly the same as he was a month ago but I notice some significant difference.

I went to carers for a couple of hours of pampering in the afternoon.

Mike had another good day yesterday with only two short episodes of hiccups. I know he was feeling a bit better yesterday because he was very opinionated and quite demanding. He feels that he will be able to come home again soon and I now feel that I would be able to cope with him. Together we have managed to overcome most of the new problems that he has and apart from the fact that we are not 100% sure about his ability to do the stairs I am able to take care of his other needs with the support of district nurses and hospice at home - three weeks ago I really didn't think that he would ever be coming home, so this is another bonus. I am so proud of him, he is so brave and such a fighter! x

Mike had quite a good day yesterday, his hiccups were much more controlled and he was much less sleepy. He has tried so many different things for his hiccups that he doesn't know what actually helps it.

I am hoping that the kids will go to see him today, I know it is tough for them but it cheers Mike up.

Mike had a better day yesterday, he only had two episodes of hiccups and managed to sleep most of the afternoon - (his snoring hasn't changed, Gill said when she arrived she could hear him from reception). His speech wasn't as good as it has been but the sedating drugs that he takes for his hiccups must have some affect on that.

I took him in the wheelchair for a walk in the gardens at Willen, it was good for him to have a change of scenery. He asked what the date was, and I told him it was the 19th and a month ago we had been on holiday for our wedding anniversary - he remembered very little about that and said he couldn't remember coming home or anything that happened since - it is a relief to know that he has been oblivious to a lot of the last month's nightmare.

Mike had a very up and down day yesterday. His hiccups were bad in the morning and we tried lots more remedies for it. Christine and Howard ordered a Hic-cup off the internet which Christine brought in yesterday morning (it is a cup with a probe up the side that touches your temple) it worked twice and gave him some relief.

He felt quite good in the afternoon and I took him for a walk in the wheelchair but hiccups returned all too soon. When I arrived in the evening he had hiccups but was on quite good form, but then had a really bad attack of them with four or five spells of struggling to catch his breath, he then felt faint and sick and was really unwell. I stayed with him until he was settled and went to sleep.

Sorry to anyone that is concerned that the blog is late this morning. Eddie very kindly got up to do the papers and I didn't wake up until 8.15 am. I can't believe I slept so long but I feel much better for it this morning.

Mike had an unsettled day yesterday, the hiccups continue to be a pain and actually made him sick twice yesterday. He continues to try to put on a brave face but it is obviously really getting him down now.

Mike was still struggling with hiccups yesterday and eventually was given a different medication to try, it has sedated him but it is actually a relief to see him sleeping peacefully rather than being so unsettled as he has been over the last few days.

The physio is seeing Mike today to see if he is able to do the stairs with a view to getting him home. I have big concerns at the moment about the fact that if anyone, (visitor, dr, nurse or any other professional) asks him how he is, his standard response is "fine" yet he tells me, and my instinct tells me that he actually feels lousy. I am concerned that people may take his response at face value and expect too much of him.

Mike's hiccups have worsened to the point that it actually takes his breath away at times, he tried a couple of different medications yesterday but neither touched it. I had already done a bit of research into it myself and discovered that it is something that happens with brain tumors like Mike's because the brain loses the ability to send correct messages to other parts of the body. I discussed this at Willen last night and it was confirmed that it is true. Sometimes I just wish that medical staff would tell me things like that, I somehow find this whole thing much easier to deal with when I have the facts, I struggle with the unknown.

Mike's hiccups continued through the night and all day yesterday, he only managed to get three hours sleep during the night and a couple of hours in total during the day yesterday - watching him have constant hiccups is exhausting so I can't imagine how he feels.

I haven't had a very good night. Jean and Eddie go home on Sundays and come back on a Monday afternoon, so last night when I came back from Willen just Hannah and Cameron were at home and it really hit me that one day there will just be the three of us, I really struggled to get to sleep and woke four times for quite long spells, I was actually relieved when it was time to get up to do the papers.

Mike had quite a good day yesterday. The problem that he has that is getting him down more than anything at the moment is the fact that he seems to constantly have hiccups - we have tried all of the normal ways of stopping it, drinking from the other side of the glass, giving him a shock (without making him have a fit) massaging his temples, massaging the top of his mouth, none of these have worked so now he is having medication for it, I hope this works and lets him settle a bit.

Hannah came to Willen yesterday and Mike wanted to have race her to do a wordsearch puzzle, sadly Mike didn't recognise any words at all.

Gill has done the big paper round with me this morning, she says she will never look at a newspaper in the same way again, I must admit I do often wonder if anybody reads all of the rubbish that gets inserted into weekend papers.

Mike had a better day yesterday and seemed much more settled. He managed to get quite a bit of sleep in the morning so he was feeling brighter for when Jean, Eddie and Gill visited him in the afternoon. His speech was quite good yesterday and his memory seemed to be not as bad as it has been.

Although I really treasure the better times with him, I do tend to keep reminding myself that every day is different and it could all be very different tomorrow, I try really hard to keep positive and I suppose that is the only way we get through each day. We were chatting yesterday about all the things we have done that we thought would never be possible when he was first ill (sixteen months yesterday) - we've had three holidays, been to several parties, had a Christmas day when the four of us all wore pyjamas all day, it was really good to think of the positives when we have had so many negatives in that time.

Today hasn't been quite so good. Mike hasn't felt good and has been struggling with his speech and has had very little mobility. We have tried to limit visiting today in an attempt to let him get some rest, he seems to not be able to relax if he knows people are coming and his symptoms get worse when he is tired, so I would really appreciate it if you let me know if you intend to visit so I can assess if he is up to it or not and try to spread visitors out a bit. We know that everyone is concerned but I am sure you will appreciate that Mike's welfare is paramount at the moment.

Following the late blog this morning and in view of the fact that Eddie is getting up early to allow me to have a lie in tomorrow I thought I would do an evening blog today.

Mike has had a good day, he hasn't had quite so many visitors today which has given him more time to rest and a chance to save his speech a little. He made some good progress this evening by managing to walk a short distance just holding my hand - this time last week I would not have believed that this would be possible.

Sorry the blog is late - I have had a nightmare morning, I got up to find the tills wouldn't work, I have spent two and a half hours trying to sort it and a further twenty minutes on the phone to the support desk - a good start to the day, but everything is up and running now.

Mike had a good day again yesterday, his speech was quite good. He had a really bad headache after lunch but it seemed to ease after he had been given some more medication. He actually finds it quite difficult to recognise the fact that he is in pain that makes him feel odd, I recognise when his head is bad because he sits with his head in his hands and can tell by the look on his face that he is in so much pain.

Mike had another good day yesterday, he managed to eat lunch and dinner - this prognosis messes with my head, but I have been warned that he will be up one day and down the next.

He tried really hard with his speech yesterday, but it wears him out and gets worse as he gets tired.

Cameron came with me to see him in the evening, he has matured so much over the past six months, he struggles so much with walking through the doors of Willen but he has decided that he now needs to do it and although he is physically sick most times before he goes in, he does it for Mike.

Mike had a comfortable day yesterday, his dose of painkillers have been increased and he was much more settled. His lack of speech is really frustrating him, last night he was managing to put three or four words together but the effort makes his head worse. I just sat with him all day holding his hand and talking to him, I went out for an hour while he was asleep and went to the city - it was a massive mistake, I found it really hard to see couples and families carrying on with their lives and Christmas stuff in all the shops, when that is the last thing on my mind.

Mike was awake more yesterday, he is so frustrated that he cannot speak and the effort of trying to speak makes his headache worse. I feel so helpless in all of this, I am with him at Willen as much as I can and am being involved in his care as much as possible. He was moved to a room with a lake view yesterday afternoon which is pleasant for us as well as him.

I can't believe how many supportive emails I am receiving from people, it is really comforting to know that there are so many people around us that genuinely care. x

Yesterday we got the news that we have all been dreading, there is nothing more that can be done and he has weeks (if we are lucky). It was horrendous having to tell the kids, I then took them to see him - it is really difficult that we know and he doesn't, although he had told me a couple of weeks ago "it was getting close" so he knew before we did.

Mike didn't have a very good day yesterday. He had a really bad headache, felt sick all day, had two small focal seizures and he struggled with both trying to speak and remembering what he was trying to say. He has very little use of his right side now which means he needs lots of assistance with everything he does, I spent most of the day with him yesterday and helped him as much as I could, it somehow makes me feel better that I can be caring for him. He told me yesterday "I feel a bit poorly" - I think this is an understatement, but he doesn't do much complaining and is so brave.

A bit of good news - Cameron passed his theory driving test yesterday. I'm really proud of him and also proud of the fact that he came with me to visit MIke last night so he could tell him and I know how difficult he finds it going to the hopsice. Well done Cam x x

Hannah is up this morning to help with the papers, thanks for that too x x

Mike is safely back in Willen, what a relief that is. It somehow seems weird that I am so pleased that my husband is in a hospice, but I know that the care there is so different to where he has been, and also that people don't just go there to die but to have their symptoms controlled.

I was able to shower him last night which made me feel that I was actually doing something for him, but it also made me realise that things have changed and he is not able to do things for himself. Another case of "just when I was getting used to yesterday, along came today" - We have crossed a lot of hurdles together over the past sixteen months and we will continue to adapt to his needs and make life as easy as it possibly can be.

Arriving at Willen was a bit like going home, there are so many familiar friendly faces and I am sure that they are what gives us both the encouragement to not give up.

Thankfully the plan is for Mike to go back to Willen today. There is a big improvement in him since the weekend, he is still very confused and thankfully remembers nothing since going to bed on Friday night - he can't remember the sickness, the seizures, the dr's and nurses in and out, the ambulances or anything bad which is a big relief.

Visiting time was difficult last night, Mike and I both got very upset when it was time for me to go, he is struggling so much to make himself understood in there and I am not sure that he understands that I am only there such a short time because that is the rules, not because that is what I want, I would be with him twenty four hours a day if I could.

Thank you to everyone who is supporting us at the moment, all of Mike's family are being fantastic as are the staff in the shop. I was pleased that Christine left a comment (she emailed me too), we met at Willen because our husband's have both got similar brain tumours, she is a great support at carers and has given me lots of good advice and tips over the last sixteen months, we intend to catch up with each other at Willen on Thursday - it proves another positive thing that Willen provides, if there was no carers group, I wouldn't know Christine and nobody knows what i'm going through like she does. Thanks x x

There was an improvement with Mike yesterday, he was much more alert and attempting to speak in short bursts. He was seen by the consultant oncologist who has now referred him back to the neurologist, I am relieved that I eventually got to speak to someone who was willing to tell me what was happening and we are hopeful that he could be back in Willen in the next couple of days. Cameron visited him last night, which I know he finds really difficult, but Mike's eyes lit up and he grinned, he was so pleased to see him. He was moved to another ward last night, visiting is still limited to three hours a day but I am hoping he won't be in there for too long.

No real news. Visiting times are really limited in MK hospital, I can see him a total of three hours a day - it breaks my heart to leave him when he cannot communicate or do anything for himself. I am hoping that there may be more news today about what happens next, even if it is just to go back to Willen where their care is second to none.