I'm finding it really difficult at the moment. I didn't stop at all yesterday, I worked from 3.45 am - 5.00 pm without a break, then Mike had organised with Hannah that we would take her to work so we went straight out at 5.00 pm to do that then he wanted to go to the garden exhibition in the city and we got home at 7.00 pm. When I spoke to my dad on the phone I told him that I was really tired and Mike started going on about I should take a sleeping tablet to help me sleep - it isn't the fact that I can't sleep it is the fact that I do not physically get the time to do it. When I said that to him he got quite nasty saying he was only trying to help, I really think he has no idea anymore what running the shop is like, in addition to looking after him, the home and trying to keep the kids on the straight and narrow. I have noticed quite a big personality change in him over the last couple of weeks he is getting even more opinionated and becoming very self centred. I try not to voice my opinion as I don't want to argue but the last few days have been incredibly hard.

I have no chance of sleeping today as Saturday mornings are busy in the shop and this afternoon we have a befriender coming from Willen to sit with Mike so I can take Cameron out for a couple of hours. One of Cam's big issues is that we never get any quality time just the two of us anymore. Although I feel that I would prefer to sleep for those two hours I think it is really important that we have this time together.

I'm aware that my blog is very moany and negative today, but sometimes it's hard to keep the smile on your face.

Mike slept the longest ever yesterday, even going back to bed after being up for half an hour for dinner in the evening. When he sleeps like this it makes the illness very real. Sometimes when he is awake he is his old self and we are able to distance ourselves from the reality of the situation, but when he has these sleepy days it really hits home.

Our new greeting cards installation is happening today, in addition to it being wages day and paper bill day so I will be kept busy, no doubt Mike will have a wide awake day and I will have to keep running up and down the stairs to him as well.

I had a letter from Karen that I used to work with at Raglan yesterday, it was great to hear from her and she says she reads the blog everyday - I really can't believe how many people look at it.

Mike went to day hospice yesterday. They looked at his swollen hands and gave him some exercises to do, they also took his blood sugar level - it is a little high but he said he had eaten three cakes by the time they took it. He told one of the nurses there that he thinks that Liz and I are picking on him because he drinks too much Red Bull to try to keep him awake - I have once again had the conversation telling him that everyone has his best interests at heart and they are only trying to help him. It is in situations like this that his lack of reasoning is really apparant because he just behaves like a spoilt child who wants his own way and is not able to listen to anyone elses opinion.

I eventually sorted out my mobile phone - I have had problems getting anyone to speak to me about it because the contract was taken out in Mike's name. I appreciate that there does have to be data protection laws but I have had real problems with some companies over the last few months who won't even listen to the reason why Mike can't phone himself or advise me what to do. We have now actioned power of attorney which should make these things a bit easier.

I have noticed with Mike over the last week or so that he is becoming more and more opinonated and it is becoming harder to reason with him at all. He even argues with people on the tv all the time and sometimes gets quite agressive with it. He came with me to pick Hannah up from work and we went to McDonalds last night, he was very loudly giving his opinion about people that were there - Hannah and I were cringing.

Mike is going to day hospice today, I hope he manages to keep his opinion to himself a little there and doesn't upset anyone if we aren't around to give him a nudge or a swift kick under the table to shut him up.

I went to carers yesterday, but read Mike the riot act before I went, after his messing about when I was out last Monday - he knew I meant it because apparently I called him Michael and I only do that when i'm cross. He went to bed and slept the whole time so things were much more peaceful last night than they had been the week before.

We talked about him coming to bed and waking me up when it is nearly time for me to get up, his first suggestion was that he sleeps on the sofa so he doesn't disturb me, so when I got back from my guilt trip for even bringing the subject up I told him that he just needed to come to bed earlier. Last night he came to bed at 12.30 pm, he still woke me up to tell me he was there but at least I did have the chance to go back to sleep.

We didn't make much progress with Mike's swollen hands yesterday - I spoke to the Dr and she said that it is the steroids as I thought. The district nurse came and put Tubigrip on them but Mike kept complaining that it was uncomfortable and too hot and took it off within a couple of hours, so he continues to just look at them and keep telling me they are swollen. I am at a meeting at Willen this morning so will ask Liz for some advice about it.

Mike's sleep pattern has totally gone to pot again. He didn't come to bed until 2.45 am, then wants to chat while all the time I am thinking I have got to get up in an hours time. When he has had enough chatting he switches off the light and instantly snores so that I have no hope of getting any more sleep so I just get up even earlier. I try very hard to accept that this is the illness, I honestly think that he has forgotten what it is like to get up at 3.45 am and what the early mornings entail, sometimes he asks me what i've been doing with my time and I have to think very carefully before I respond!

It's carers today but I don't know if I will go, it depends on whether Mike is likely to sleep for the afternoon or whether he is going to "mis-behave" like last week. I am going to try and get some advice about his swollen hands today and hopefully put his mind at rest.

This morning has got off to a better start, yesterday despite giving all the paper boys/girls a note reminding them that the clocks were going forward I had eleven late rounds - it has saved me a fortune in attendance bonus but I cannot believe that so many households can forget, wonder if I will have as many an hour early when the clocks go back in October?!

The clocks have gone forward and so I have lost yet another hour in bed, in addition to the fact that Mike didn't come to bed until 3.00 am and wanted to chat, then he went to sleep and promptly snored, by which time it wasn't worth me attempting to go back to sleep so I got up at 3.30 am (which would have been 2.30 am). One of the newspaper wholesalers have already warned us that they are likely to be late and i've got three paper boys off today so it looks like we could be in for a "fun" morning.

The garden is looking much better, the second skip is now full too. Dad kept Cameron busy all the time. He is going home today but is leaving us with instructions of what else needs to be done now.

Mike is ok, but getting himself in a bit of a state about his swollen hands, I keep seeing him looking at them. I will speak to someone about it tomorrow to try and put his mind at rest.

Everything is quite calm in the Kerr household. Dad arrived yesterday morning and had filled the first skip by 11.30 am so we had it emptied and a new one delivered - didn't realise we had that much rubbish!

Mike was quite good yesterday, slept all morning but sat and chatted to dad in the afternoon, slept again for a couple of hours and was awake all evening. His headaches have improved with the increase of steroids so we just need to keep an eye on his swollen hands now.

We have had a really busy morning, it's our first weekend without David helping with the papers - it has been a bit of a struggle but Judy has been a real star - she was woken by the phone at
3.00 am by her son to be told that she was a grandma to twin girls, congratulations!!!!

I have a new Saturday girl doing a trial afternoon today with the possibility of working Saturday afternoons and Sunday mornings - so I need to get my professional, efficient head on before then - I don't want her to think that I am as dizzy as I sometimes appear to be.

Nicky - I am glad to see that you are commenting again. I do always laugh when you talk about Uncle Tosspot. For the sake of other people reading the blog Mike has wound Nicky up and given her grief forever (like he has the rest of us). Once when she was younger she went to call him Uncle Mike and said it wrong, he laughed and said "don't worry you can call me whatever you like" - she decided Uncle Tosspot was appropriate and that is what he has been for years.

Mike was very sleepy yesterday and complained that I kept waking him up for meals and medication, in addition to the fact that the district nurse came mid morning and woke him up again. It is quite reassuring when a nurse that hasn't been for a while comes and notices how "good" he is at the moment. His hands are swollen again, but his steroids are higher and this happened last time. Last month I had his wedding ring made two sizes bigger but is now beginning to get tight again, some nurses say he should just leave it off, like it is nothing - it's a really big thing to us, we have never taken our rings off and also there is an extra bit of sentiment that we bought them with the money that Mike's grandad had sent us as a wedding present and we have always remembered and often said that they were a special present from him.

My dad is arriving this morning to start on the garden makeover - I just look at it and don't know where to start, at least he will organise getting something done.

I'm a bit later writing the blog this morning - I thought it was only right that I implement the price increases that Gordon Brown wants me to as soon as possible. It is snowing quite heavily at the moment - I wasn't expecting that today, and it doesn't fit in with my plans for the gardening.

Mike had a good day at day hospice yesterday, he was a bit tired when he came home so slept for a while and then was on quite good form in the evening. I attempted to sleep while he was there, although they have started demolishing the building over the back from us and it was a bit like trying to sleep on a building site.

This morning was my last morning with David's help, he is having a hip replacement later today (hope it all goes well!) - so the mornings are going to be much harder with just two of us.

The picture has now moved to the bottom of the pictures on the right hand side of the blog. I had a little technical difficulty.

What do you think about this picture? What do they look like???
I didn't think I would ever say it, but I think I actually prefer Mike
with his post Chemo hair compared to the big hair in the picture.

Brenda (Russell's mum) sent it to me, thanks for that.

Today can only get better! I got up this morning, switched the landing light on, the bulb went bang and all the lights tripped. The trip switch is in the shop next to the glass front door, so I had to fumble around in total darkness looking for some clothes to put on so I could go down to sort it without being arrested for indecent exposure.

We had a much better day yesterday. My cousin, Julie called in to see us in the morning, followed by Liz from Willen followed by our old friend from Reading, Russell (he's not old, just been a friend for a long time - went to school with Mike).

Mike was very chatty in the morning, talking about how he would like the garden to look and where he would like his chair and the plants he wants - I have reminded him that it is my poor old dad and Cameron that are taking on this massive task in just two days.

Russell brought Mike up to speed with all the gossip, so he is quite pleased about that - who says women chatter??

It's day hospice day again today and we are back to the Wednesday morning saga of will the nurse turn up on time to do Mike's bloods before breakfast or will he be asking me every couple of minutes if we have got the right day or is she coming at all. I intend to catch up on some sleep when he is out, but that is my intention most Wednesdays - in reality it doesn't happen very often.

I had a horrible day yesterday, Mike and I argued for the first time in months. I feel that I am constantly in a no win situation. I went to carers in the afternoon and when I came home he had showered, been on the internet and been down in the shop. I got cross because anything could have happened - I know that he should have and I try to give him as much idependence as possible, but I think it is incredibly unfair to Marie who listens for him on a monitor while I go out for him to be doing things like that. Showering wears him out and in the past he has had a fit which he totally blamed on the lap top. I find it really difficult because it is almost like having a spoilt child, I try not to argue with him because time is precious and I don't want to waste it, but I feel very hurt that when I am at home with him and often suggest that we do things all he wants to do is sleep, yet when I was out it was like he was a naughty kid that had been left in the house to do as he likes. It is difficult to know how much of his behaviour is the illness and how much is him being a typical pain in the neck, when I told him how I felt he just blamed me for bringing his mood down when he had felt quite good and took himself off to bed and slept for three hours, which appears to be his coping mechanism for whenever the going gets tough, as he does this whenever there is a problem with one of the kids. Eventually it got the better of me when I couldn't sleep and felt incredibly guilty for arguing with him at all, I apologised even though I didn't feel I was really wrong - by this time, he couldn't remember what he'd done. I think I may be banging my head against a brick wall!!!!

I must say that the kids did eventually redeem themselves yesterday. A boquet of flowers arrived, but only with Hannah's name on it and it was apparently supposed to have been from both of them and Cameron had paid half the money -so World War Three broke out briefly and that lovely feeling of receiveing flowers went out the window somewhat. (Sadie from the florist came along this morning worried that it was her mistake, I have reassured her that it was a lack of communication by the kids and not her problem at all). Cam did eventually give me a card (it was one from the shop, but must say it was top of the range!). He cooked dinner last night, even taking into consideration my new diet, and made me a flower and a crocodile out of fimo, which I thought was very sweet. I don't know why I was so bothered about it because I think you should show your family you care every day and not have just one specific day a year for it, although obviously I do encourage all of these money making occasions as I make my business successful out of selling cards and chocolates.

Mike did a lot of sleeping during the day yesterday, but we did have a bit of an evening together which is always good. I need to get him up and keep him busy this morning so he will sleep this afternoon when I go to carers.

I have been trying to wake Mike up for his breakfast for nearly half an hour now and every time I go back in he is snoring again - it looks like I will have to sit with him every day to keep him awake.

It's Mother's day today, not that I would know it. The kids have eventually got up, Hannah has given me a card and a cuddly giraffe, Cam has grunted once as he walked past me (in that lovely normal teenage manner), when Hannah asked him where his card was he said he chose one out of the shop the other day - so I have not had it yet, and when I do I will have paid for it myself anyway. I am not really that bothered, I hate Mother's day, my mum died the day after Mothers day two years ago and last year it haunted me that we had visited her in hospital the year before, but this year for some reason it seems even harder.

Mike slept a lot again yesterday, he says he really doesn't want to sleep but when he gets up he gets tired very quickly and ends up going back to bed.

Mike slept most of the day yesterday, I struggled to keep him awake long enough to have his lunch and medication, every time I went out of the room he went back to sleep so in the end I had to sit on the end of the bed and talk to him to make sure he had it. I am a bit confused by this as his steroid dose has increased and the effect of steroids has always been that they keep him awake. I think he is a bit confused this morning because when I was downstairs sorting the papers I could hear him walking about upstairs, when I went up to check on him the TV was on, but he said he hadn't been up - Cameron is away at a sleepover and Hannah is fast asleep, so maybe we have a noisy ghost here as well. I will keep a close eye on him today.

Yesterday was quite uneventful - Mike's dose of steroids has been increased as he has been having a few more headaches lately (probably the noise of his snoring, because i've certainly had a headache or two!).

Not very impressed with the weather forecast - supposed to be heavy snow on Sunday, there is nothing like delivering papers in the snow when the rest of the world is tucked up in bed.

My dad is going to come up next weekend to attempt to start on the garden and help Cam fill the skip that we have ordered, so hope the snow has gone by then.

A better night, Mike slept propped up on pillows last night and the snoring was bearable, twice I had to tell him he had slipped down but as soon as he got back onto his pillows it was better.

Mike had a good day at day hospice yesterday - I am sure that the improved weather has lifted our mood, he went for a walk around the garden there yesterday which he really enjoyed but was exhausted when he came home. He slept for a couple of hours but then got up for dinner and was awake for the evening.

We are planning to sort our garden out, my dad has offered to come and give Cameron some help to do the manual stuff - I actually think we need Alan Titchmarsh or something, the grass is in major need of repair and we could probably do with several trips to the tip. Mike has always enjoyed the gardens where we have lived before and never really had a chance to make anything of the garden here because that is where the dogs lived. It would be really good for Mike if we can sort it out so he could sit out there in the nicer weather rather than looking at the same four walls indoors.

Another night on the sofa, but from 11.30 pm this time. Liz from Willen rang yesterday and advised me to get strips that you put across your nose to stop you snoring - I did this, and Mike agreed to use them as long as I did it too. It had no effect on his snoring at all, he came to bed at 11.00 pm and by 11.30 pm I could not handle it anymore. He has always snored to some extent but nothing like we are having now - it is so loud and continuous, in the past one jab in the ribs has been enough to shut him up, but I can actually shout at him and last night I slammed the bedroom door but he still carried on.

Mike slept most of the day yesterday but came with me to meet Hannah from work and then he wanted to go to Tesco's - that was an experience not to be missed! Hannah pushed the wheelchair and I pushed the trolley. It is almost like having another child - all he was interested in buying was treats like special cheeses and fancy chocolate Mousse and seemed to forget that we actually needed to buy some basic food as well in order to have meals this week. Thankfully we can all laugh about it and Hannah was very tolerant of the fact that he was quite demanding about where he wanted to go and what he wanted to see.

Mike is at Day Hospice today and the nurse is coming this morning to do blood tests before breakfast. Every other day of the week I have to wake him up to make him eat breakfast and take medication, but on a Wednesday he always manages to wake up early and then moan that he can't have his breakfast because the nurse hasn't been.

My blog today sounds like I am really moaning about Mike, I am just very tired and fed up with not being able to sleep in my own bed. I love him so much, he just frustrates the hell out of me sometimes - this isn't all a new thing, he was quite good at winding me up before he was ill, I suppose that now I just feel guilty if I do it to him.

Help, I can't sleep!!! I need some good advice on what to do to stop Mike snoring - I have been awake since 2.30 am and am getting increasingly tired and irritable. I have never heard a noise like it, the minute his head hits the pillow it begins and however many times I ask him to stop, jab him with my elbow and eventually shout at him it doesn't make a difference. It has been happening for about three weeks now and is so loud that it can be heard from all the other rooms - I have attempted to sleep on the sofa but without success. I am desperate for a proper nights sleep.

On a more positive note, Mike had a good day yesterday, he came up the High Street with me for the first time since last September - we went to the travel agents and booked a weeks holiday for July.

I've got that Monday morning feeling - not that any morning is any different to me and if anything Monday is the easiest (newspapers are the smallest they are all week and no magazines). We are really back to normal now, Cameron is supposed to be back at school today, but I am already getting myself stressed at the idea of having to get him out of bed and get him there. I am back at carers this afternoon to drink lots of tea and be pampered for a while.

Some of you will know that I too have been having some tests at the hospital recently, which have caused me and the kids a great deal of worry (Mike has been concerned, obviously - but it is very hard for him to imagine that anyone is remotely unwell if they haven't got something as awful as a brain tumour) - I have now had the results from the tests and they are all ok - I am very relieved, and a little suprised as I have learnt to live with bad news over the last nine months. Not that we are counting, but today is nine months since Mike was first ill - it brings mixed emotions that he has been unwell for so long, but we are very lucky that he is doing so well at this stage considering what we were told at the beginning.

Mike had a duvet day yesterday, I am not suprised as we had him awake for so many more hours a day when we were away - he says that he does not feel unwell just exhasusted. I can relate to that I really struggled with getting up this morning and am still not fully awake now. I hope Mike will be awake this morning and then we can both have a nap this afternoon and maybe get back into our routine.

Back to reality with a bang! Woken by the alarm at 3.45 am, no full English breakfast, no hot tub, just a cup of coffee on the run..... I must admit that I did feel a little surplus to requirements doing the papers this morning, David and Judy have got the whole thing so sorted that I didn't really need to be there.

Everyone else is still asleep, I am hoping that Mike's routine is not messed up again but he was tired when we got back yesterday so went to bed and then wasn't tired again until 1.45 am (I know the time because he wakes me up chatting when he gets into bed-I think he has totally forgotten what it is actually like to get up at 3.45 am and has conversations with me in the middle of the night like it is the middle of the day, I never complain although I can imagine that my responses are not always as good as they might be at other times, but I do appreciate that he does need to say things when he remembers them because by the morning they would be gone).

I forgot to say yesterday, I received three emails from people saying that they have missed reading the blog as it is part of their daily routine - I have missed doing it too, and am very touched that so many people read it on a regular basis.

We're back - just what the Doctor ordered. We have had a really lovely few days that almost resembled normality. We have done lots of things that we would have normally done on holiday.
It was lovely to have the kids almost full attention without mobile phones, lap tops and Sky tv - Cameron had problems accepting that some people do only have a few channels on their T.V.

We played cards and Jenga in the evenings - Mike was proud that he could beat Cam playing with his shaky hand. We read a lot, talked a lot and more importantly laughed a lot. Hannah said to me "it is hard to believe why we are having this holiday because dad seems so good at the moment and we are all having such a good time" - I got a bit upset because it was so true.

The lodge was lovely and so were all the luxuries that came with it. There is nothing like getting up in the morning and sitting in a 40 degrees hot tub for half an hour (compared to getting up at 3.45 am and sorting newpspapers). I am afraid that I have added 3 pages of our photos to the blog to bore you all.

On the way home Mike said that he would like to go back in the summer - I find it really hard to plan ahead because it feels like we are living on a time bomb all the time, but the kids are really enthusiastic about it too, so we have decided that we will book up (and pay the insurance obviously, because they were willing to cover Mike) and then focus on getting Cam through his GCSE's and have something good to look forward to.

A big thank you to Judy, David, Ingrid and Marie who kept Newport News going brilliantly while we were away - none of this would have been possible without you. x

The lodge

Our room

Our room, looked
lovely but the bed
was a bit like a board.

Bathroom

Bathroom with spa
bath - another luxury.

The Sauna

Luxury!

Kids Bedroom

The kids sharing a
bedroom was much
more successful than
I imagined it might
be.

The Kitchen -
everything was adapted for
wheelchair users, the first
time I have ever been able
to reach the top of a kitchen
cupboard in my life!

Living room

The living room -
through the patio
door you can see
the hot tub.

View from front of lodge

The view from the
front of the lodge.

Leiston Abbey

The view to the right of
the lodge. In the distance
are the Leiston Abbey
ruins.

Our Lodge

The front of
the lodge

Hot Tub

Hannah in the
hot tub.

Aldeburgh

This was our favourite
beach-little fishing village
where you can buy fresh
fish off the beach.

Aldeburgh Beach

Look at the sky!
We sat on the beach
here.

Sea Life Centre-Great Yarmouth

Hannah holding a starfish
at the Sea Life Centre.

Mike and Cam on Southwold beach.

Southwold Pier

It was a bit drafty out on the pier - but you
have to do it when you're on holiday!

We found a really well sheltered area for
Mike on the beach.

Hannah was determined to paddle
in March!!!!

It's a lovely thought that I have four mornings of staying in bed ahead of me!!!!

I think I have got everything sorted and packed, although I have spent so much time making sure that I have got Mike's medication, oxygen, wheelchair, walking stick etc someone is sure to arrive without any underwear or something else important. My theory is that the things that I need to take for Mike can't be easily obtained from anywhere else but at least most other things for the rest of us can be bought in a shop if need be.

We intend to have some quality time together without any interference from mobile phones and lap tops (obviously I will be taking my phone for emergencies) but the kids are going to experience what it was like in the olden days when we were kids that you contacted your friends by sending a postcard when you were away not by spending a fortune texting them.

Hannah assures me that she now has batteries in her camera so hopefully there will be pictures when we get back. I am sure I will miss doing my blog every day when but I will bring everyone up to date when we get home.

Auntie Pat & Uncle Cyril cutting cake

Nicky, Jim, Adam, Hannah & Cam

Nicky & Jim

Nicky sharing her hair with Mike

Hannah & me

Did & Mark

Nicky & Hannah