We had a really good day yesterday. When I got back from the meeting at Willen, Mike was up watching tv. We had lunch and then went up the city for a couple of hours, I felt like I had walked miles, I think Mike forgets how far it is when he is sat in the wheelchair.

Mike was talking a lot about going away yesterday and about the Golden Wedding on Saturday and how much he is looking forward to seeing everyone. He seems to have got the bug for shopping because he wants to go back up the city on Thursday to buy a new shirt to accommodate his big cuddly steroid tummy.

Mike's going to Day Hospice today and is quite happy about going, last week he was a bit reluctant because I had a hospital appointment in the afternoon and couldn't pick him up so he had to be brought home. I always think he looks really vulnerable when I leave hime there and he always says "you'll will pick me up won't you?". I have to stop myself automatically saying "no I don't think i'll bother today" but I don't know what it would do to him, it is almost like when you leave your children at school and you reassure them that you will come back at 3.15 pm. I really miss him when he is there but I think it is good for both of us.

Mike slept a lot yesterday although when I woke him up at 6.00 pm he said he hadn't been asleep long, he did get up though and we had a good evening together.

I'm going to a meeting at Willen today with all the professionals involved in the care of all of us. Mike is actually invited to the meeting but it is better that he doesn't come because I fear that it might turn into something like the Jeremy Kyle Show. I think that one of the things that I find hardest with Mike's condition is that when there is a disagreement between any of us he forgets half way through the conversation whose side he is on.

I'm glad to see that Nicky left a comment yesterday, she sends me cheeky texts all the time but hasn't been leaving comments lately. We are all looking forward to seeing everyone at the party on Saturday, it's been a long time since all the family have been together.

Mike didn't have a very good day yesterday. He was awake longer than he has been for a while but he got very stressed by the kids behaviour and went to bed following a focal seizure.

Cameron is having a really tough time at the moment and is demanding almost 24 hour attention from me, it is always difficult to try to distinguish how the kids would be if circumstances had allowed them to be normal teenagers and not have all this extra grief going on in their lives. Liz from Willen said that I need to remember that teenagers are just toddlers in bigger clothes and whenever I think they are being unreasonable or immature I always try to remember that -it makes a lot of sense.

Mike's mum would be proud of me at the moment, when she stayed with us when Mike was first ill and there was so much that we all needed to do and remember she told me I should write a list. At the moment I have four lists running alongside each other - one reminding me to order repeat prescriptions, keep appointments etc for this coming week, one with notes that I need to remember for the meeting at Willen on Tuesday, one with things that I need to remember to take with us when we go away, and one to make sure that I have told the staff every little detail that they need to know, trying to remember all the things that I do automatically without thinking.

Mike slept most of the day again yesterday, then woke me up at night to tell me he couldn't sleep, how I manage not to shout at him sometimes never ceases to amaze me. He then woke me up again to ask me if I was going to take Hannah to work in the morning or if she needed to get a bus - I have taken her to work on Sundays for as long as I can remember so I wasn't particularly happy about having to have that conversation in the middle of the night either.

Luckily I had gone to bed early because Mike was watching casualty, it seriously upsets me that I have to spend an evening watching what to us is real life - there always seems to be someone having a fit, being diagnosed with a brain tumour or being told they're terminally ill, there is enough real life drama in the Kerr household without a load of actors who probably haven't ever experienced any of this nightmare pretending.

Mike is still sleeping most of the day. Liz from Willen came and has suggested a couple of minor changes in his medication so we will see if we can stop him sleeping so much. Unfortunately sleep is Mike's coping mechanism and when the going gets tough he goes to bed. Mike's illness does affect the way that he deals with things, one of the biggest problems being the kids. All of us are on an emotional rollercoaster but sometimes it seems that Mike doesn't think it is acceptable for anyone to hurt other than him.

Another sleepy day. Mike has only been awake for meals and medication today and finally got up at 5.30 pm for his dinner.

Hannah and me have had some retail therapy today. We went looking for outfits to wear to the Golden Wedding party next weekend and got some bits for when we go away.

The kids have decided that they would swap bedrooms today, the whole place seems to be in chaos.

Mike has been at Day Hospice today. I struggled waking him up this morning but we got there eventually. For some reason he was a bit reluctant to go today and told people in the shop on the way out that I make him go. Sometimes I feel I can't win, but I know that he does enjoy it and it gives him something else to think about and talk about.

Mike was Sleeping Beauty again yesterday - didn't get up until
4.30 pm. He doesn't realise that he sleeps so long and actually denies that he has. He did come to bed at a reasonable time though and slept with no problem which means I had a reasonable night's sleep too, apart from his snoring waking me up occasionally.

I went to carers yesterday afternoon and drank far too much tea. We had home made bread pudding which reminded me of my mum's cooking.

Mike slept most of the day yesterday, he got up at 4.30 pm.

Nicky, Adam and Jim brought Cam back and they all seemed to have had a good weekend and a great time at the boxing on Saturday night, especially as Michael Sprott won in the third round.

Gill arrived not long after with Marks & Spencer's Chinese, and Mike's favourite Eve's pudding. We really have been well visited and well looked after by our family this weekend, thanks to all of you. x

Mike has had three minor fits in the last two days, I hope it doesn't knock his confidence as he has been so positive since the appointment with the consultant and since we have booked our short break away. He also has a sore throat today - sometimes you tend to forget that he can have normal colds etc and not blame everything on that horrible disease.

After a great deal of thought and consideration our dogs were re-homed yesterday. I found it much harder than I thought I would to let them go, but it really is for the best. They have always been Mike's dogs, Cameron has never been forthcoming at feeding and walking them and over the last few months it has become an added stress for everyone - Mike has been upset that he's not able to do it and been getting increasingly angry with Cam because he hasn't been doing it. It does feel that it is another thing that has had to change in our life, nothing is as it used to be anymore.

And a thank you to Clare from Willen and her husband who were coming out of Pinks across the road when I came back from cash and carry today and they very kindly helped me unload the car.

Child Labour

Things have got so tough in the shop that we employed our five year old niece and nephew, James and Imogen for the afternoon today. James did all the paperwork between drinking his ribena and Imogen just looks like she has had enough, her face looks like she was up at 3.45am doing the papers!!

We've had a lovely afternoon with them, and obviously their mum and dad, Karen and Ian too. Thanks for coming it was great to see you, and thanks for the KFC for lunch x x

Slightly more flattering pictures of James and Imogen can be found at the bottom of the blog

It's all quite quiet in the Kerr household today (Cameron is away). Hannah has already done two paper rounds with me and it is only 7.20 am (she's being very helpful this week!).

Karen, Ian, James and Imogen are coming to visit today, we're really looking forward to seeing them and hopefully we will get to take some photo's so that they too can be featured on our blog.

Mike had a fit yesterday, it wasn't a major one, but it has un-nerved us a bit because he had gone quite a while without one. We always attempt to find out what may have caused it, but we think that this one was caused by him laughing too much at old photos - some of which you can see at the bottom of the blog.

I can't believe that I have got regular blog readers, yesterday I didn't put anything on the blog for reasons that I will tell in a moment, and received three emails checking that everything was ok because I hadn't done it.

Yesterday was a bit of a nightmare, I woke up at 2 am feeling incredibly sick and continued to be ill until 8.30 pm. It is the first time in the three and half years that we have had the business that I have had to take a sick day. Once again our staff were brilliant and kept everything working like clock work. I was nagged to go to the dr's, so at 4.30 pm after making friends with the toilet bowl for the ninth time I decided that I would. As I had imagined he deicded it was a bug, but he did ask if there was any possibility that I was pregnant. I told him that bearing in mind Mike's condition and the fact that I had a hysterectomy seven years ago I thought it was quite unlikely - so we agreed that if I was we would sell the story to the News of The World and share the proceeds.

Hannah was a little star yesterday, she ran around after me, made sure Mike had lunch and medication, made sure that they all had dinner, covered the shop while Marie took me to the dr and sat with me while I felt really rough. I almost forgot, she went to the travel agents and paid for our holiday too (obviously with our money).

I feel much better today although a little weak and weary - one positive thing is that I am 5lb lighter than the day before yesterday. Mike alway says think positive, how positive is that?

Cameron is going to Reading for the weekend, Nicky and Adam are picking him up today and bringing him back on Sunday. They are going to Wembley tomorrow to see the boxing, Michael Sprott is boxing, he lived two doors away from us when were first married and the kids used to watch him do his skipping outside on the pavement, he's really looking forward to it.

We now have heating and hot water - it is the closest thing to heaven!! A good lesson was learned with my heating problem - I called a company out of the yellow pages on Saturday, was charged £105.00 for an engineer to come and tell me it was broken (thanks for that) . They told me I needed a new heat exchanger that would cost £169.00 plus £60 an hour labour and it couldn't be done until Wednesday. I was fed up with being cold yesterday and got a second opinion - We didn't need a heat exchanger we needed a washer replacing that was £2.20 - a saving of £226.80.

Mike had an appointment with the consultant yesterday, it all went quite well, he is not going to have any more treatment at present but they are impressed with his physical wellbeing and the fact that he is able to walk a reasonable distance without sticks or the wheelchair. He suggested that we go away and have a holiday - so that is what we are going to do. The kids are desperately looking on the internet for ideas - Mike wants to go somewhere near a beach as he wants to feel the sand -i've never thought of a British beach in February/March but the idea of the four of us having some quality time and a change of scenery does sound very appealing to me.

Mike remembered it is Valentines day which impressed me, his new found personal shopper (Hannah, who was actually born to shop) has taken care of getting a present and a card. Mike has written the card himself which I will cherish forever.

Thanks Ryan for your comment yesterday (for some reason it is on 25th January comments). Mike is looking forward to being a film star courtesy of Ryan.

Todays blog entry is probably going to be the most honest so far. I have had very little sleep and although it is not 9 o'clock yet the day hasn't got any better.

Mike woke me up three times last night, not because he was unwell but firstly because he decided that he would start rummaging through the drawers in the bedroom when I was trying to sleep, secondly because he found something that he wanted me to read, and thirdly because he went in the kitchen and it sounded like he was playing skittles with the glasses - by this time it was 2.30 am and I only had an hour and a quarter left for any hope of sleep.

At 3.45 am when I got up Mike, Hannah and Cam were all tucked up in their warm beds when I started the ritual of boiling kettles to have a wash and plucking up the courage to take the plunge to walk into the now freezing cold bathroom.

When I got downstairs there was no improvement, for some reason WHSmith decided they would forget to deliver The Express today, which delayed everything and the lady that does the large commercial round is off again and I had to do that as well. Yesterday when Hannah wanted to borrow money she said she would help me do the round, today when I attempted to wake her up it was a different story. Cameron is on half term but he refused to help me either - I hate that round and when I do it myself my head gets full of horrible thoughts about whats going on now and what the future will be like and I always end up doing half of it in tears.

In addition to this today is Mike's appointment with the consultant - this is a really important appointment as the decision will be made as to if he can have any more chemo. I try really hard to be strong for Mike (and the kids obviously), but today I feel that it would be nice if they could do something for me and just have some appreciation of how I feel too.

Eight Months on..

Today is eight months since Mike was rushed into hospital with the first fit. In some respects the time has rushed by but in others it has seemed like a lifetime. We have been through so much in that time and things have changed so drastically.

Mike has been his normal self this morning, I try very hard not to get frustrated by his demands so this morning I have just laughed. Mike lost his hair last August following radiotherapy and in the last couple of months it has very slowly started to grow back, in places it is now about 5mm - well today, bearing in mind that there is no hot water he decided that it is essential that he has his hair washed - his wish is my command (sometimes!), so I have boiled kettles and washed it over the kitchen sink for him. I gave him the full hairdresser service, I offered him a blue rinse, asked him if he'd been on his holidays, asked if he's going somewhere special and told him for an extra £5 he could have conditioner and a cup of coffee. Luckily he thought my sarcasm was funny and we laughed together.

Maybe I have found the answer to the not sleeping at night problem, I have thought all this time that I am looking after Mike by making sure that he is always warm - but what a result, the heating is going to be out of action until at least Wednesday, when Mike got a bit chilly last night we went to bed and he slept through to 6.20 am. I can only compare how I feel to when Cameron finally slept through the night regularly at six years old (by which time I had got in such a habit, I couldn't sleep myself).

Thank you to everyone that has offered to lend us portable heaters. I can't believe how many times a day I use hot water without thinking, the kettle seems to have been on constantly since the boiler died.

I was pleasantly suprised at the fact that Mike did sleep most of the night, he went to bed at 10.30 pm and slept until 3.00 am, thats only 45 minutes before I have to get up so it didn't really make a great deal of difference to me. Although I am relieved at having a reasonable night I do worry why he is sleeping so much. Saturdays are not a good day, we don't know why but from the time that Mike first came out of hospital we have always struggled on Saturdays.

The snow has gone now, this mornings paper round was just wet and cold.

Our boiler has gone wrong and so we have no heat or hot water. Hannah has declared "a national state of emergency" because she can't wash her hair.

There's not a lot of news today. School was closed again and so Cam has enjoyed another extra day off. Hannah has been out in the garden building a snowman as well - there is something quite refreshing about how the snow has allowed both of the kids to have a good time, when they have so much to deal with everyday.

Mike has slept all day again apart from getting up for half an hour three times, but that half an hour seems to tire him out. I don't actually think he has any idea anymore of how much he is actually sleeping. It will mean that he will be awake all night again no doubt.

Hannah bought me flowers today. We had a bit of a heated discussion and both of us said a lot of things that we didn't really mean - we're friends again now but sometimes we need to clear the air, i'm sure she knows I love her really. x

Mum/Grandma's Birthday Present

Today would have been my mums birthday, I was unable to get to Reading to her grave, but Nicky and Adam sent me this picture from their visit. Mum would have really appreciated this and it really cheered me up.

View from shop up High Street

Newport News in the snow

I woke up this morning thinking that the weather forecasters had been wrong, there was no snow in sight at 3.45 am. By 6.00 am the town was at a standstill. Thankfully all the paper boys/girls arrived on time - Well done to them! The snow has continued to fall and all the schools in the area are closed. I wouldn't blame Mike at all today if he chooses to remain under the duvet, although it may become a problem when I try to get him to sleep tonight.

My technical skills cease to amaze me lately, I have managed to download photo's of the snow from my phone onto the blog

Just in case you read the comments - Anonymous is actually Hannah.

We have some good news today - the scan result shows that the tumour hasn't grown since the last scan in November, obviously we are all very relieved. Mike has had a lot more headaches in the last few weeks which made us both think that it probably wasn't going to be good news today. His dose of steroids has now been increased and also the dosage of painkillers so hopefully we will get that a little bit more controlled again.

Mike's sleeping was awful again yesterday, he slept all day and got up at 7.45 pm and stayed awake until 6.45 am. I find it difficult to sleep when he is not in bed, although thankfully he hasn't had a "big" fit for a few weeks I am always conscious that it could happen and therefore I don't really sleep even if I do go to bed when he is having a wakeful night.

It is now 8.00 pm and Mike is yawning but I am attempting to keep him awake to take his medication at 9.00 pm and then go to bed in the hope that he will sleep all night.

We now have the sponsor forms in the shop for Sadie & Belinda's London Marathon for Willen Hospice - Please help us support them.

I have just read what I wrote on the blog yesterday and depressed myself. I know that a lot of people that read it get upset and thats not really the idea. We are very aware that we are living a nightmare but we are doing our best to make it as happy and as easy as possible for everyone and sharing our daily dilemmas with you is somehow theraputic for me. Mike is probably the strongest out of all of us and requested very early on that I don't cry in front of him, there has been occasions when it's been unavoidable but on the whole we still spend a lot of our time together smiling and laughing.

I love Sadie's comment about winning the London Marathon, I think it's brilliant that she's running it, we hope to help her get massive sponsorship by having sponsor forms in the shop. If she does win i'll give her a whole box of dark chocolate flakes.

There's not a lot of news today. We still don't know when we are likely to get a result from the scan, Mike is getting very anxious about it now and so I will make a couple of phone calls tomorrow to attempt to get some more information.

I've been to carers today, had my hands massaged and am now full of tea and home made cakes. Carers is usually a positive place but today I was very conscious of how many people no longer go because they no longer have anyone to care for.

Mike slept most of the day again yesterday only waking up for food and drugs. He did get up in the evening though to take control of the remote control just in case I thought I was going to get to watch something that I wanted to on TV. I find it quite amusing that the things that he used to watch all the time are now "trash" and we end up having to watch weird programmes. He also watches every hospital programme possible and has even suggested that he becomes a stunt double for people on casualty having fits because he doesn't think that they are very good at it. I must admit though after witnessing the amount of fits that I have now some of them are a bit amateur. (as are some of the dr's dealing with them).

Today is my favourite day of the week, as the shop closes at 12.00 and Sunday afternoon is the only chance I get to sleep without an alarm clock. It gives me an opportunity to recharge my batteries to be able to deal with whatever the following week may bring.

I reluctantly admit that I found yesterday really difficult and so did not write anything on the blog. I hate it when my emotions get the better of me, but this week has just been so full of appointments which make the whole situation very real. Although the nightmare never goes away, we do still have good days and we do have days when we laugh about the same things that we would have previously, but this week has had stress levels at a real high. We still don't know when to expect a result from the scan and the unknown is really difficult to deal with, sometimes more difficult than the hiddeous reality of the whole thing.

Mike slept a lot again yesterday and so his sleep pattern is all confused again.

Cameron is struggling too at the moment and finds it hard to accept that any help that is offered to him is actually help. I worry that he thinks that everyone is against him, although I can relate to how he feels as I often wonder what I have done so wrong to deserve this. I need him to know that I love him no matter what and that Mike and I always have and always will be very proud to have him as our son. x

Today is scan day - I don't know who is more nervous, Mike or me. Then we have that awful wait for the results ahead of us, it feels like we live every day on a time bomb.

Happier things are happening elsewhere today, our niece and nephew, Imogen and James are celebrating their fifth birthdays, so happy birthday to both of you and hope you have a fab time at your party. x