Saw oncologists this morning and it was obvious to all how bad my breathing had got. Had emergency echo and chest xray. Heart function down a bit but not worryingly so but chest xray awful. It looks as if a child has scribbled all over the xray with a white pen and that is all the secondary spread so it's now even worse than it was in september. Have started xeloda - a tablet or rather 5 tablets in the morning and 5 at night. Have decided to stop herceptin as it was obviously not doing anything. Apparently after this there is only gemcitabine/carboplatin left if my bone marrow can take it. Apparently as now had vineralbine I'm not eligible for the tykerb trial which I'm really angry about. The oncologist said we are looking at months so really down and upset.
Have still not said anything to the kids yet but AJ obviously knows as he can't settle tonight and came down saying he had been crying and didn't know why. Woody clings to me all the time and Laura does her best to help me all the time. We really don't want to tell them until after their brownie/cub show but the time has come when we must. Not sure how we will but when we do we will let all our family and friends know so they can forewarn their children or whatever they wish to do.

Mother's Day - I did actually manage to send my mum a card on time but I'm afraid I never got round to buying her a pressie so will have to put that to rights. Quite impressive organisation for me in my current state.
I got woken up by hubby and the children with a cup of tea and cards and pressies. AJ came in carrying his big paper flower on a stick with lovely comments on like 'I love you' and 'I love you when you hug me'. I also got Kaiser Chief's new CD. I had also wanted Take That's new CD but I don't think hubby could bring himself to buy that. I find it hard to admit that I actually want a Take That CD but then my musical tastes have alwyas been dubious!! The twins bought me some plants for hanging baskets and freesia buobs to plant. I love the smell of freesias. I hope I od better than I did with Laura's christmas present to me that she made at Brownies. This was a beautiful hand painted pot by Laura with an undentified bulb in. It got a bit dried up between when she planted it in november and when I opened it in December and now I appear to have a flag iris - another favourite flower of mine - which is blooming but is about 2 inches away from the soil!!
Laura put in her card for me to have a 'nice long bubble bath'. She did point out that she said that was because she knows I like to have a bath but never have time to rather than she thinks I smell!! I'm glad she put that straight.
Twins off at Roverang practice all day again and AJ is watching a Ninja mutant turtle hero DVD so I did succeed in having a long bubble bath whilst listening to the Kaiser chiefs and now I'm listening to my library in Itunes which is full of a very odd selection of music. So far I've worked my way through songs from The Fray, The Gorillaz, Franz Ferdinand, Joe Jackson and Steve Harley. Soon it will be Van Morrison and Julian Cope from memory of the order. Hubby is off seeing his mum.
This afternoon, we're meeting up with friends for food. Hope the men have got the idea that they are supposed to eb doing the cooking whilst us girls can sit and relax!! I'll let you know if that happens!!!

Not feeling happy - I didn't know how long I would be off chemo for but I had hoped to get a few months before the next round. I'm still hoping this will be the case but at my last visit the registrar thinks the skin spread has come back in about the same place as last time. I know it feels sore but I can't see any changes yet but I know it is more swollen there. The only option would be more chemo but I'm reluctant to start that yet as the bottomline is skin mets don't kill so want to hold out until something else kicks off. It is again about 8 weeks after treatment stopped that this has happened so feel very low. I had quite an uneventful day at chemo and the bleep system actually worked as I went down to the MacMillan Centre and I got bleeped!! Hurray!! Something has changed for the positive in the chemo unit then!!
My negative experience happened the day before at the smaller hospital near by where I go to get my blood taken. I had Laura at home with this bad tummy pain so had to take her down to the unit with me. I went at 2pm as it is usually quiet then but not this time. There were 24 poeple ahead of me. One of the blood ladies was taking her time - the other one seemed to do 3 times as many. I'm not sure whether she was on 'a work to rule' schedule as I know they are short staffed and fed up. after 45 minutes there were still 2 people ahead of me and I had to get back to pick AJ up from school so I popped my head round the dor and explained the situation. The ladies knew me well - they have seen me every 3 weeks for nearly 2 years now!!! - so let me in. I just burst into tears as I felt stressed and I'd had a difficult conversation with Laura earleir in the day to explain that I still had cancer in my hip and lungs. The blood ladies were lovely and both came over to hug me and comfort me - I was trying to tell them to hurry up or else the others waiting would be getting cross but they said I was important and it didn't matter. I must try and be organised next time I go there and buy them a bunch of flowers because they do always take an interest in me and are kind. If I mention I'm going for a blood test on the 27th march perhaps someone could text me to remind to take flowers or something please. Anyway, when I came out I got really glared at by all these elderly people who were cross with me.
Later that evening I met up with my sister-in-law and a friend for pizza - what else - and was telling them what had happened when my sister-in-law said 'oh it was you was it!! Her work colleague had been there at the same time and had got the ticket about 2 numbers after mine and he'd told her that all these elderly people were irate that 'I'd pushed my way in'. I was still 10 minutes late to pick AJ up but I had managed to phone the school so they could look after him.
Since then I've been really low and feel I want to withdraw from contact with family and friends. It feels as if I'm not around so much now then people and family won't miss me when I do die. I've talked over how I feel with the hospice nurse and will see the GP next week. I know I should go for counselling but then that feels it is another commitment on my time. I will try to follow this through though. So if I've been anti-social recently thta's why.
The other worry I've had is that although my direct managers are wonderful and have in effect hidden me and redeployed me into a useful role, somewhere along the line, finance know I'm not holding a caseload. I hadn't seen occy health since my return as I didn't want to see that horrible doctor and I knew I'd been referred there. I was scared that I might be pushed into medical retirement or reduce my hours and lose pay. Anyway, this week I've found out that I 'm going to see the nurse so do feel happier about that.
I've also got ingrowing toenails again - I think it is my heeled boots that are to blame and that has been getting me down.
I'm so tired and that is effecting how I function at home so am dropping things and forgetting things again. Hot chocolate powder smells nice but doesn't make a good floor covering. Dropping my water over my slippers was also not a good move as it is only the pair I've got and my feet suffer so much when they are cold.
On a good note - people have been providing dinner for us for which I'm really thankful as I'm so tiredwhen I move around. I can sit at a computer for hours (like I do at work) or just sit and sew/knit etc and I'm fine but the minute I have to walk around and be active I get so tired. I'm also feeling the cold more so that makes me feel that the beast is on the move again.
My friend also took AJ yesterday as hubby was at work and twins at their Roverang proactice so that was a brilliant help and meant I could cuddle up to my hot wheat bags and do nothing but sleep.
Due to my inability to think ahead, it was on the fateful day when the ignition broke that I got round to organising the dressingup clothes for the circus week (twins) and book Character (AJ). This was the day before the big event. I bought a top and leggings - size8 - forLaura to go as a hula hoop girl in a charity shop and found a black long jacket for Woody to wear as a Circus Ringleader. I hunted around the mess that is the boys bedroom and thought I'd found enough of the Captain Hook costume for AJ. Next morning, of course, AJ wanted the only bit that I hadn't found - the hook!! Somehow he found it very quickly. I took photos of them all and they looked brilliant. It seems so much effort and I'mnot sure what the juniors get out of dressing up really - all I know is that it causes stress to the parents.

What a system!!! As you may be aware Laura seems to havea problem running and seems to gallop rather than run. Useful for a horse but not right in a girl. Early February, we saw the GP who looked at the 'Choose and Book' system at the surgery which gave us the one choice of Salisbury Hospital which is about 35 miles away. As we had no choice, I booked the appointment. 3 weeks later, we got a phone call from the surgery saying that Salisbury had contacted them to say they were not accepting patients from our area and had not doen so since December 2006. She would be referred to the same hospital where I have my chemo and is 5 miles away. Much more sensible.
On saturday I got a letter saying I needed to phone one of two numbers within two weeks to book an appointment for her. I did this on monday. The first number I tried gave a very complicated message but basically told me to phone another 2 numbers. I did this and had to leave a message on the answerphone. To be fair, she did phone back in a couple of minutes but she was surprised I was phoning as Laura's appointment had alredy been made and had been sent out. When I questioned why the first letter had been sent out she said it was always sent out as it was generated by the computer!! Don't they know how to reset it then???!! Tuesday -the letter arrived giving me the same tiem and date as I had been told the day before - miracles do happen even in the NHS. This told me that I had to phone to confirm the appointment or it would be given to someone else. I phoned the number on the letter and got through to another hospital which is part of the same Trust but on a different site. She could not find the appointment and then she realised that was because Laura's appointment was at the main hospital and she couldn't access their lists!! She also couldn't give me the number to phone either. Utterly demoralised by this whole botched thing, I phoned PALS and explained the situation. She confirmed the appointment for me and I've sent her copies of the letters so that they can sort this out so other parents don't have the same problem. Of course, the hospital trust blames the community trust for this - I don't care who is to blame but I've made 4 phonecalls to try to sort this out - no, actually 6 as I phoned Salisbury and the GP surgery and the NHS have sent me 2 letters when 1 would do both with incorrect telephone numbers on.
Please tell me it is not just me that struggles with the NHS and I even work for them!!!

Well now I've gone all out of order which I think is the first time I've done that!!
We were on the 7am plane so had to be up early. I didn't realise our friend who took us to the airport was so lively and full of wit and humour at 5.30am. We did our best to be humourous too but I don't think we succeeded!! The airport was full of stressed and smart looking business people with their laptops already active in the waiting areas. We were just calm and laid back. The flight was on time and I think there was only ours and 1 other piece of luggage in the hold so no waiting around at the other end.
We took the bus inot Glasgow and asked for Buchanon Bus Station. Not sure whether it was Glaswegian humour or the bus driver got lost but he didn't drop us at the bus station but somewhere about 15 minute walk away! We walked up to Queen Street to check there was no problems with the trains and got 2 bananas flung into our hands as we entered the concourse. As we had a long train journey and no lunch, it seemed a good idea to grab 2 more on the way back out the station plus this time they came in a bag with a squishy stress banana!! Tea and scones in John Lewis followed where we amused the other customers by taking photos of ourselves. We had to explain that John Lewis in Southampton prides itself on its view over Southampton Docks!! it was more picturesque in Glasgow!!!
We still had time to kill so as Pete wanted a pair of shoes we found a Clarks shoe shop - we were beginning to think that Glasgow just had designer shops and no high street ones, when we stumbled upon clarks. To our amazement Pete actually managed to buy a pair of shoes and to nobody's surprise I found a pair of boots. Not only were they Gortex lined but they were also only £20 so now we were faced with a dilemma - we had only booked one piece of luggage on the flight back and now we had extra things to take back. We went back to the station and collected more bananas, a bottle of water and a tangerine plus more squidgy stress-bananas and a stress tangerine!!
The train journey was fine but I think we were the only people eating fruit and drinking water on the train. Everybody else was eating what looked like corned beef white bread sandwiches, scones and biscuits washed down with sugared tea or beer. We did take photos of our bananas and me knitting just to prove how many bananas we had collected and ate. I will ask Pete to help me download some of our photos onto this blog as evidence!!
Perthshire was completely underwater. I've never seen water flowing so fast and fields were completely flooded. The funniest thing we saw was a portacabin in a field which had water up to the top step and next to it was a tractor with a hopper in the front. 3 men were stood on the top step and the only way they muat have got there was by the tractor apwth men being carried in the hopper!!
we arrived in Inverness and was met by my friend who I'd done my nurse training with. We first had a cup of tea in their house and then she took us out for a quick trip around the Moray Firth. It was a beautiful afternoon (well for a while before it became cloudy and cold!!!). We saw Red Kites and some other water fowl - of course now I've forgotten their names - prompt me please!! In the evening, we went to an Italian Restaraunt where we had wonderful food and wine.
Next morning we woke up to peace and quiet - well if you ignore the sound of lovely bird song that is!! Their garden had so many sparrows, dunnocks, and different types of tits in as well -it was great.
After a very leisurely breakfast, we went back around the Moray Firth to try dolphin spotting.My friend and I saw a couple just bobbing about but Pete didn't - he feels fated nopt to see one. He was busy spotting a seal and the cormorants. We also saw Turnstones which did as their name suggest turn stones!! We then went onto the Floral Halls in Inverness which were very pretty and had amazing Koi Carp in including goldy yellow ones. We also had tea and lunch!!
Then off to Aviemore and through a snow storm to Cairngorm where there was snow!! Pete had a good time jumping in the snow. We contemplated going upthe furnicular railway tot he top but there was cloud cover and it didn't seem worth the £27 it would have cost the 3 of us when we had good views out across the land at that level.
Quick shopping trip in Aviemore and home for pizzas, salad and loots of whiskey tasting. If anybody fancies buying Pete a birthday present then Laphroig quarter Cask would be his ideal but otherwise any of the other Laphroigs went down just as well. I just had the smallest of sips and decided I'd stick to the wine - boring person that I am.
Next morning - again after a leisurely bath and breakfast, we set off for the station.
Inverness Station staff must be the most rudest and loudest railway staff I have ever met!!! They were absolutely amazingly strict!! The platform indicator said our train was leaving from Platform 3 where there was a local train already there so they let a few people in through the roped off area and made them stand outside the platform entrance and then refused to let the rest us of through and shouted at us that we would be let through at the other end. People kept trying to get through the gap but they were man and womanhandled back to the waiting area!! The Edinburgh train arrived and all the departing passengers were shouted at for not moving quickly enough and other people were shouted at for trying to get through where they were coming out. Eventually, we were let through the first gap but had to stand at the entrance. We obviously did not stand nicely enough as we got shouted at to move along and stand closer together. Eventually, we got on the train where the carriage labels did not seem to match the booked seats and off we went. Everybody in the queues were laughing about the station staff and we were all good humoured which probably made the station staff more annoyed as we did not take them seriously enough!
We arrived in Glasgow and had a couple of hours to spare so another cup of tea in John Lewis followed. Then more shopping and then an Italian meal in Dinos. It was so busy for 5pm!! Think the food was better in Inverness though!!
Glasgow airport was quite deserted at 7pm. We got our tickets and got on the plane and found it was a little plane with big propellors - something like a Dash 400 springs to mind!! We got seats right next to the propellors so it was rather noisy and vibrating a lot. We also had a female pilot!!
Another friend bought us home.
We've got some lovely photos of our short break and Pete still hasn't seen a dolphin!!!

• Thank you to our hosts in Inverness and all that driving around you did and sharing whiskey and looking after us.
• Thank you to our 2 chauffeurs for taking us back and forth to the airport and
• a very big thank you to an anonymous person who made this trip possible for us

We are so lucky to have friends and family who do so much for us. We are truly grateful.

Had a very stressful evening which is quite funny now I've calmed down. Hubby finished work early and decided to reorganised the car port and then did something wrong and so knocked some of it down leaving a lovely big gap in the back gate for very big burglars to go thru!! Cos he lost his temper with his workmanship, I went to pick the kids up. Got the twins from childminders and dropped Woody off at home. He went in the back door past hubby who obviously didn't notice him and he just sneaked upstairs to the x box. I went to the after schoolclub to pick up AJ. Got back in the car and the key wouldn't go in the ignition - something had broken inside the lock. To make matters worse, there was a drainage comapny trying to work right near where I'd dumped the car and the steering lock was now in and I couldn't turn the wheel even if someone pushed me. I phoned home - no reply - Woody was obviously too busy on the xbox to answer the phone - tried hubby's mobile - no reply. After 10 minutes, Laura walked home on her own to fetch hubby. He walked back with assorted tools and Laura. I tried to get hold of the AA and said I was a very ill woman on my own with children and they said it would be anything up to 2 hours to come out to me!!!! Not impressive is it!! Hubby suddenly said 'where's Woody?' I said at home - Hubby hadn't noticed Woody didn't notice and had locked him in the house!! I phoned the neighbour who has a key and she went to fetch him. He was rather shocked and thought I must have crashed the car - I didn't think my driving was that bad!!
Luckily, AJ's best friend's dad was picking up his son from the club and offered to take me and the children home cos I had no coat and couldn't walk that far. Note to self - take coat in future!! Then hubby phoned to say there was no AA card in the car and he had no ID and could I bring the card down. I was going to drive down when I realised he had the only key to the other car. Luckily, our other neighbour arrived home from a long day at work and so I persuaded him to take the card down. My friend then arrived with the special trousers for Laura's circus outfit tomorrow and she went down to give hubby some food as he was complaining he was hungry!! Then I looked at the answerphone and it was flashing that sparked a memory that our dear friends had cooked dinner for us and we were supposed to have collected it. After hearing my tale of woe, she volunteered her husband and son to bring the food to us so I had a wonderful lasagne.
Eventually, the AA came 75 mins after I'd called them and it took them about 30 minutes to get the lock out and do some temporary repair job until I can get it fixed properly. How much will that be then!! .
Kids gone to bed late after crappy tea cos of stressed mum. Hubby's gone straight out to the morris minor pub night and has lost his mobile!! We thought he'd lost the house keys but I've found them now but we still have a huge gap at the back gate where his new carport went all wrong and he was trying to sort out when I had to call him out.

There are several lessons to be learnt from this sorry tale

• always carry your mobile on you even when working ouside on a garden job
• always carry a coat in cold weather incase of car failure
• encourage son to answer the phone if it keeps ringing and there is his frantic mother shouting'pick up the phone'
• look for alternative companies other than the AA
• always park considerately incase you can never move the car

Tonight, I really want to thank my friends and who acted as

• chef and waiters
• a chauffeur for me, Laura and AJ
• AA card deliverer
• circus trousers deliverer
• son rescuer
• food deliverer to hungry hubby

Hope I've not missed anybody off.

Wanted to post this first and then will make another post about other things