Mike had a good day at day hospice yesterday, he painted some of his pottery and had some relaxtion therapy which he hasn't done for ages. Not suprisingly he was exhauseted when he got home and slept until I woke him for medication at 8.30 pm.

We watched Big Brother last night, Cameron and I found it quite amusing that up until Mike was ill last year he was totally addicted to it and even used to record it over night and look through it in the morning to see if he had missed anything. His attitude has now changed considerably about reality TV and he sat and moaned about wasters and that he can't understand why anyone would want to watch it.

I managed to sleep for a couple of hours when Mike was at Willen yesterday so have recharged my batteries ready for another day.

Mike slept until 4.00 pm yesterday and stayed awake all the evening. I can't believe it is Wednesday again already, bloods and day hospice day. His steroids reduce by another 2mg today so I will be keeping an eye on him again. Liz has said that if his headaches get worse, he fits or his speech changes just to put them straight back up.

I have no plans for while Mike is at day hospice so hope to catch up on a couple of hours sleep.

It's a good job that I got to stay in bed yesterday morning because I haven't got a hope in hell of sleeping at the moment. Mike came to bed at 11.30 ish and woke me up to tell me about the conversation he has had with Hannah, he then got out of bed again and went into the living room, about five minutes later I heard a loud banging noise, he had shut himself in the living room and couldn't get out, so I had to get up to open the door. He then got into bed and was asleep and snoring very loudly within seconds. I am now left awake and bearing in mind the time and how soon I need to get up it is not really worth even attempting to sleep.

Mike was awake some of yesterday afternoon and all the evening and seems to be quite well. I get told off by many people when I say how I really feel on the blog, but at the moment I am finding it quite tough and without sleep everything seems a whole lot harder. I apologise if anyone feels the blog is negative, but I write it as it is - I never imagine that anyone is reading it and use it to express how I really feel. I don't resent Mike waking me up, I know he can't really help it and if he has something to say he needs to tell me while he can remember. I've kissed him and told him I love him even though I really think I wish you'd shut up snoring and let me get some sleep.

Today is the first day that I have woken up in daylight for as long as I can remember. It was so nice knowing that there wasn't going to be an alarm clock and that I could just turn over and go back to sleep (even if that did mean putting my head under the pillow to drown out Mike's snoring). Thanks again Judy and David for doing the papers this morning and Judy went out and did a round in the pouring rain as well.

Mike slept all morning but was awake a lot of the afternoon and evening. I got a bit concerned at about 7.30 pm when he asked for a temazepam because he felt a bit twitchy (the first sign of a fit) but we managed to catch it in time. I feel that I am constantly watching him because his steroids are reducing.

It's typical bank holiday weather, I don't imagine that much gardening will get done today. I intend to close at about 11.00 am and if I really wanted to I could go back to bed again!!!

Yesterday was another sleepy day, although Mike did have the TV on in the bedroom which he hasn't done for a while and he says he remembers watching parts of a couple of programmes. I noticed that his speech was not as good as it has been lately last night so I am keeping a close eye on it as his steroids are due to reduce again this week.

Gill came to visit last night armed with KFC - another day I didn't have to think about what we were going to have for dinner. Thanks Gill x

If I had such a thing as an employee of the week award Mel would have won it yesterday. Marie phoned and spoke to Mel to say she was still unwell and wouldn't be able to come in , Mel told me "Marie isn't coming, but don't worry I'll stay until 5" I don't know what I would have done without her this week, she has covered all of Ingrid's hours whilst she is on holiday and now helped me out enormously yesterday - Thanks Mel you are a star!

Talking of employees of the week - Judy (and her husband, David) would also be up for an award tomorrow. They are going to come in and sort all the papers and let me stay in bed - what a lovely thought!

I still find it hard to believe how many people are so helpful and how many people offer to do things. I find it very hard to accept help but appreciate it when I do.

Liz from Willen came yesterday, she looked at Mike's back and suggested that the dr should see it. He saw the dr yesterday afternoon and the verdict is it is another side affect of the steroids - he now has some more tablets to take that will hopefully clear it up.

I am absolutely exhausted, Mike woke me up questioning where Hannah was again last night when I was in a deep sleep. I can't publish on the blog what I really feel about the way that Hannah doesn't accept there are any rules in our home, she just pushes them to the limit more and more each day without any thought for anyone else. I got up this morning feeling like I hadn't been to bed. I have also got a sore throat and headache, but I am not suprised as Hannah has had a cold for weeks now and Marie has been unwell for the last couple of days. Ingrid is on holiday and Marie is due to work this afternoon but I don't imagine that she will be well enough so I am going to have to fill myself up with cold remedies and soldier on.

Cameron came to Homebase with us last night (Adam would be proud of us!), we got some more grass seed and plants for the garden and Cam got some things that he is going to attempt to grow - it was quite calming watching him pottering around the garden.

Mike slept most of the day yesterday. He is already up this morning, he has had lots of problems with itching in the last few weeks, he has been taking hayfever medication for it, but this morning his back is covered in red pimples, I imagine that the heat and the fact that he is lying on his back most of the time has something to do with it. Liz from Willen is coming this morning so I will ask her about it.

I have already done a paper round this morning and am about to start doing the paper bills and wages. Cameron has got his technology exam today - I have stopped nagging about revision (possibly only temporarily) but he is big enough and ugly enough to know what he needs to do.

Mike went to day hospice yesterday, he was really tired when I picked him up and a bit upset that another one of his day hospice friends had died that morning. It always shakes me up and makes me remember the reality of this awful situation - Mike always says that day hospice is like waiting for god, I don't know where he gets his strength from to remain positive, but if we weren't positive we may as well have given up a long time ago.

We almost bought Sadie out of plants yesterday afternoon, I have now planted all the pots and put a few more things in the border, it is beginning to look quite nice. We intend to look for chairs this weekend and then hopefully Mike will be able to start spending some time out there, (the weather forecast for this weekend is horrendous so he may have to wait a while). Amanda asked for before and after pictures to be put on the blog, I don't have any before but I will put some during and after ones on.

Cameron was due to go to the boxing with Nicky, Adam and Jim this weekend but Michael Sprott is injured and so the fight is postponed. Cam's not very happy, he was really looking forward to it and it was supposed to be his bit of enjoyment in the middle of his GCSE's.

Mike had a better night last night. Hannah came home on time and it makes so much difference, so thankyou Hannah - long may it last. x x

Mike and I went out for lunch yesterday, although Mike found it a really big struggle. He asked me to wake him up at 11.30 am and it actually took until 12 to get him out of bed, he insisted that he wanted to go but I didn't feel that he was really up to it. He got dressed and put a fleece on, I told him it was very warm out and that he would not need it but he insited on wearing it (his thermostat has not worked very well for months now, we spent many cold winter evenings with the window wide open because he was hot) - well when we were out he complained he was too hot.

We had a nice lunch and bought a few shrubs for the garden, we were out an hour and a half in total and Mike was exhausted, when we came home he went to bed and didn't wake again until he needed to for medication at 8.15 pm.

He is wide awake this morning, I can't get him to settle - The phlabotomist is coming this morning and then he is going to day hospice so he really could do with catching up on some rest now - he has had a very active night again, I actually lost count how many times he was in and out of bed and how many times he woke me up chatting. I wish I could just sort his body clock out and then we would be able to have more quality time together instead of our bed being a bit like a relay race.

I managed to get three hours undisturbed sleep yesterday morning and feel a whole lot better.

Mike slept most of the day, he got up briefly in the morning to watch an old episode of The Bill but then slept until I woke him for lunch and dinner.

The Pink's Garden Army came and did loads more work in our garden last night, they have dug out borders, cut the grass and strimmed - it really is taking shape now. We really appreciate what they have done for us.

Mike and I plan to go out to lunch today, we are going to Frosts so we can look for ideas for the garden at the same time.

Cameron has got his English Literature GCSE this morning - good luck, do us proud!!!!

Please just let me sleep!!!!!!

I was really looking forward to yesterday afternoon, it's the only time I ever get to sleep without an alarm and for the last two weeks we have been busy on Sunday afternoons so it was the first time in three weeks that I was going to get some quality sleep - well I was wrong again!!!

I went to bed at 2.15 pm and then Mike woke me up telling me it was four o'clock, I woke up all in a panic thinking it was morning and I had overslept, but no, it was only four in the afternoon, I told him that I hadn't gone to bed until after 2 so he said "go back to sleep if you like, I just thought i'd tell you it was 4". I couldn't as by this time I was not relaxed at all and incredibly angry that he had woken me up. Things didn't get any better, I had an early night because I was still desperate to sleep, at 12.15 Mike got into bed and woke me up to tell me Hannah wasn't home and could I phone her, I did, and she assured me she would be home in a couple of minutes - by the time I turned to tell Mike what she had said he was snoring - I was then awake again and 45 minutes later Hannah arrived home. I couldn't get back to sleep because of Mike's snoring so Hannah told me to go and sleep in the spare bed in her room so I did, but not long after I was asleep Mike came in there and woke me up saying "I wondered where you were". This morning I am suffering from a severe lack of sleep.

Jean and Eddie came yesterday morning, Mike slept until lunchtime but then got up - the rest of his sleeping pattern is as above!

Cameron appears to be doing quite a lot of revising, I really hope he is because it would be really sad for him to mess up now.

What can I say, but the best team won!!!

Mike slept all day, he got up for a little while during the first half of the football but went back to bed quite quickly and didn't get up again until I woke him for medication at 8.15 pm. Jean and Eddie are coming this morning and Mike intends to be awake for them, he struggles with mornings so it will be interesting to see if he manages it.

I have had a manic morning already, the papers were very late, I have done a paper round and had two paper boys that were so late I thought that I was going to have to do a couple more. I have got so many things going on at the moment that I am back to writing lists, my problem is I don't know which list to do first.

Mike was a bit of a sleeping beauty yesterday again (I don't know if sleeping beauty snored like he does though!). He had been awake a lot on Thursday because Jean and Eddie were here so he spent the day catching up. In the evening he was quite awake and so we went to M & S to buy some quality convenience food, by the time we got to the checkout Mike was exhausted again and had to go and sit down. I was trying to empty the trolley and keep an eye on Mike at the same time, and the man in front of me was making polite conversation, in my head I was saying "shut up and let me get on with my shopping" - sometimes it's easy to forget that people don't know what is going on and what I am thinking. (that's probably a good thing, because my thoughts aren't always pleasant!!!)

Cameron would be very disappointed with me if I didn't mention that Chelsea are the best team in the world, and of course they are going to win today! I have planned my day to spend the afternnon watching the game with Cam, but I have woken up with a very sore throat, a stiff neck and a banging headache so I may struggle to stay awake if it is not an exciting game.

It was lovely having dinner cooked for us last night. Mike stayed awake all afternoon which was good because it meant he came to bed at a reasonable time and it may help towards sorting his sleep pattern out a little.

Today is another busy day - it's bills and wages day plus it's the farmers market in the town today which seems to make the shop much busier than usual.

Mike has been having some symptoms that point towards steroid induced diabetes so another blood test has been planned. When I spoke to Liz at Willen yesterday she asked if he craved sugar, I don't think he does particularly but I do, (unfortunately owning a sweet shop means there is a lot of sugar to hand) so maybe I should have the blood test too.

Mike had a good day at day hospice yesterday, he was exhausted when he came home, he went to bed and slept for three and a half hours.

Alex, Ryan and their mum came and started on our garden last night. They have strimmed and cut the grass, filled in holes and planted grass seed, even though it poured with rain it didn't stop them. They are going to come back next week to cut the grass again and sort out the borders. We really appreciate them doing it, it will be really good for Mike to be able to sit out when the weather improves.

Today is officially Cameron's last day of compulsary education (how old does that make me feel?!). Study leave starts tomorrow, I have tried to make him understand that it is "study leave" not just leave but I have a feeling that I will be doing a lot of nagging over the next three weeks.

Jean and Eddie are coming today and bringing dinner - you can't imagine how good that feels. Some evenings when I have finished with the shop, thirteen and a half hours after I started, the last thing I feel like doing is thinking about cooking dinner. It is a really lovely thought that I don't have to think what are we going to have.

The hospital appointment went well. There has been no significant change in Mike since we last went in February. He is going to have another scan in three months time unless anything changes and then they will scan him earlier. We are both very relieved and can now look forward to our holiday in July knowing no further treatment is scheduled for now.

It's Wednesday again - phlabotomist and day hospice day, I don't know where the weeks go.

My day hasn't got off to a very good start, the papers are late and I have still got a round to do.

As expected Mike slept all say yesterday. The befriender came in the afternoon while I went to carers and Mike didn't even know he had been. I find it quite amusing that the first time that he came Mike thought that he had to get up to entertain him, not that he was coming just to sit and make sure that everything was ok.

Mike has an appointment with the consultant this afternoon, he keeps asking me what time the appointment is, I have assured him we will leave in plenty of time to allow for the horrendous lack of parking at Milton Keynes General. Cameron had an appointment there yesterday and we ended up parking at the furthest possible point away from where we needed to be. Even though we have a disabled badge when I take Mike there is still a massive lack of space.

I have already done a paper round this morning because I had a call from one of the lads mums last night saying she was at A & E with him having stitches because he had fallen off his bike.

We had a good day yesterday. Mike slept all morning but got up just after everyone arrived and stayed awake all afternoon and evening, I thought it would mean that he would have a good night, but once again I was proved wrong, he has been up and down I don't know how many times.

It was really good to see everyone yesterday, thanks for coming and for all my presents x x

This week is another busy week. Tomorrow Mike has an appointment with the consultant, I can't believe how quick it has come as when the appointment was made May seemed so far away. Physically there really hasn't been any change in Mike since the last appointment in January which is really good, but obviously we both still get very anxious around the time of these appointments.

I've got lots of thankyous to do today - Firstly Sadie brought me flowers yesterday, Jean and Eddie left me a lovely present when they were up last week and Gill arrived last night with presents cards, KFC and a sympathetic ear - thanks to all of you x x

Mike bought me a white gold cross with a diamond in the middle for my birthday. When Mike was first ill he asked that all four of us wear crosses, at the time we just bought what was available but the one that I have now I can wear forever. Gill bought me a wonderful dressing gown that is so cosy I could hibernate in it (maybe I will!!). I've had a text message from Marie and Neil who are on holiday in Thailand wishing me a happy birthday, I think it's really nice that they remembered.

My dad and brother etc are coming up today which will be good, I haven't got a clue what we are going to eat yet as I haven't had a chance to buy it.

11 Months

It is eleven months today that Mike had his first seizure which marked the beginning of this nightmare. 12th of June will be imprinted on my memory forever, I remember being horrified when the dr in A&E said "your husband has had a stroke" and wondering what level of disability this would mean and what the future would hold. Little did we know that within two weeks they would have found a tumour, done a biopsy, removed part of the tumour and given us the news that he had a prognosis of six to nine months. A stroke would have been a much easier option.

We soldier on taking each day as it comes and treating every day as a bonus. Mike keeps his humour in all this and calls this time "past his sell by date". We approach my birthday knowing that it will probably be the last time I will get a wife card. Thankfully we are having lots of visitors tomorrow to keep us busy or I think I would find the day even harder to cope with.

Mike slept a lot yesterday but was on quite good form in the evening and then slept well at night. The kids were out so I stayed up later with him but I am suffering for it this morning - the shop doesn't close for another ten hours yet so i've still got a long way to go.

Mike and I went up the city to buy my birthday present last night, he did really well and managed to walk with his stick rather than use the wheelchair. We intended to have dinner while we were out but couldn't decide what we fancied so went to Marks & Spencers and bought lots of yummy treats and went home for dinner.

I thought that Mike's exercise would make him sleep last night, but I was so wrong - He seemed to wake me up every hour on the hour. He woke me twice to ask me if Hannah was home, then woke me again and asked me what time she got in, then woke me again to ask me what the time was. I try so hard to be tollerant when he wakes at night because I know the feeling too well of not being able to sleep and lying in the dark alone seems to make everything so much worse. He has probably exhausted himself now and will have a sleepy day.

I had to wake Mike when the phlabotomist arrived yesterday, but luckily it only took two attempts this week to get blood out of him. He had breakfast and went back to sleep, I then struggled to get him to wake up again to get ready to go to day hospice. When we arrived there I was taken to one side and told that one of his friends had died quite unexpectedly over the weekend and so to be prepared for the effect it may have on Mike. Mike does suprise me, although he was initially quite upset, he has an attitude that if you go to a hospice you expect people to die. Sometimes I wish I was as strong as him - however ill he gets I never stop being so proud of him and admiring the way that he is dealing with this nightmare, if I had half his strength I would be a much better support to him.

I spent some time with Sandy (Family Support Worker at Willen) yesterday, she is a very special person and a tremendous support to all four of us. I don't know how she manages it but however awful I am feeling she always makes me laugh in the end. She convinces me that my teenagers are just being teenagers, but obviously with lots of added pressure in their lives. I always feel that when I speak to her I can say what I really feel and she always tells me it is acceptable to feel the way I do, whereas I find it difficult to be truthful to other people that are emotionally involved. This is when I really miss having my mum to pour my heart out to - I often wonder how different it would have been if I still had her to support me.

I've not got a lot to say today. Mike slept most of the day again yesterday but intends to go to day hospice today. The phlabotamist is coming to do his bloods this morning so I hope he will stay asleep until then and not get himself in a state waiting for her.

I am struggling a bit at the moment and so will keep todays entry brief so as not to say anything that might upset anyone.

Mike had a restless day yesterday, he kept getting up but after about ten minutes decided that he was tired and needed to go back to bed.

Molly came round last night (but Mike slept through it) with a massive wedge of wedding cake and her bridesmaids flowers for us - thanks for that, it's really lovely.

As if I don't have enough trouble with getting up in the mornings, Mike was awake today and kept telling me to stay with him - the thought was nice, but in reality I don't think customers would be very happy if they didn't get their papers because I had decided not to get up.

I had never realised how much Mike
looks like his dad until I saw this picture.

Despite what this looks like, Jean and Mike were not drunk.
I think Hannah (the photographer)
may have been though by the amount
of the top of their heads that has been
cropped off. It's a really cheerfull
picture though!!

It's Bank Holiday Monday and "normal" people have a day off today, including my staff. Thankfully paper boys work bank holidays and Mel is doing the shop from 7 am. Hannah and I have been out to do two paper rounds and there is nothing quite like a paper round in the rain.

We had a good afternoon at Gill and Pete's for Mike's dads birthday. Mike slept for a couple (or three) hours which didn't suprise me because I had to wake him up to get ready to go at lunchtime. We were all given a party bag when we left - it's the first one i've ever had that has had a small bottle of champagne in it!

I am counting the hours until I can go to sleep today - I think I have actually gone past the point of being tired and am now really irritable and easily wound up !!! Beware kids!!!

Mike has already been awake once this morning but has gone back to sleep now, I will need to wake him again in about half an hour to give him medication.

Mike slept the majority of the day again yesterday. He has said that he "feels weird" the last two mornings when he first wakes up for breakfast, but he can't explain how he feels, when I ask later in the day he says he's ok.

Hannah stayed in last night and cooked the dinner, we put our pyjamas on, wrapped ourselves in a duvet on the sofa and watched trashy TV - it was lovely. Mike got up and voiced his opinion about what we were watching and started channel hopping, Hannah laughed that one of the things that was on was Grumpy Old Men, she said he should watch that as it was very appropriate.

Mike slept all day yesterday, he had been awake more on Thursday because his mum and dad were here, but I had to wake him for meals and medication yesterday, he eventually got up at 7.30 pm, so we had a very brief evening together before I had to go to bed.

Molly and Buster get married today, Congratulations to you both. We were hoping to go to the wedding but with this horrible illness it is impossible to plan anything in advance and Mike really isn't up to it today, he has already been up once this morning but has gone back to bed now.

I've had to part company with another paper boy and therefore have had to do the round myself this morning, my first task today is to replace him.

We had a good day yesterday. Mike slept until late morning when the nurse came and woke him up, he hates being woken up suddenly at the best of times but I always get in the neck if I let a nurse do it. He chatted to her for ages and when she left he asked "what did she want?" - I never know if he is confused or just being his normal lippy old self.

Jean and Eddie came and we had a nice afternoon and evening. We're looking forward to catching up with everyone on Sunday afternoon to celebrate Eddie's 70th Birthday.

The Marathon Runners

Sadie & Belinda at Willen Hospice with
their medals

We are all really proud of you.
Well done for raising so much money for
such a good cause that are being such a
support to us.

Yesterday was another good day. The phlabotomist came really early, I had to wake Mike up when she arrived, she actually managed to get blood at the second attempt out of the back of his hand. He then had breakfast and managed to have a sleep before he had to get up to go to day hospice so things were a whole lot better than last Wednesday.

Jean and Eddie are coming today so I plan to let Mike sleep as long as possible this morning so he is awake for them this afternoon.

We had a much better day yesterday. I went to a metting at Willen in the morning and came home and went straight to bed for a couple of hours. In the afternoon Mike was very awake and decided he wanted to walk to the bank with me, I was a bit apprehensive as it is quite a distance and didn't know what I was going to do if half way he decided he couldn't do it. He did manage it and got hugs and kisses from the girls in the bank who were really pleased to see him, so that boosted him a little. We met Hannah from work and had our traditional Tuesday McDonalds and then went to Ikea to get some bits for my next shop window (watch this space!).

It's Wednesday again so I will see if I can make Mike last until the nurse gets here this week to do his bloods. He's going to day hospice, I just hope he didn't do too much yesterday to be able to enjoy today.

I really don't know what to say today - I am really struggling with Mike's outspoken opinion and the fact that he is totally convinced that he is right all the time.

I made the mistake of saying that I was tired yesterday and did not see an opportunity for me to sleep in the near future as I have so much on this week. Mike said that if I managed the business better there is no reason why I shouldn't be able to have a couple of hours sleep every day. I have managed this business alone for ten and a half months now and I know that he can't remember what it entails but none the less I am really hurt by his comments. By the time he wakes up to have his breakfast I have already worked almost five hours and that is only the beginning of the day. So I will continue to be tired but just not bother commenting anymore - I find this really hard as we have always told each other everything we are thinking but obvioulsy I need to edit my thoughts even more now.