Warm weather - it has been so blissful to have the last few days of sunshine. Saying that it took so long to get organised for Woody's cub camp on saturday that by the time we went out to the local park, it had turned cloudy!! Anyway, the 3 of them enjoyed themselves down by the shore and playground but we did not enjy paying 60p for a teaspoon of icecream (not even the Mr whippy sort) and a small flake. the council had advertised there would be a family fun day there but there was ot so don't know what happened to that then. Very odd!!
As soon as we came home, our usual icecream man and so we bought another icecream for 60p that was big, delicisous Mr Whippy sort and with sprinkles and sauce!!
Sunday - was a bit of a rush as we had to get out the house by 9am to drop me off at the station and get Woody off to camp.
I missed the train by 5 mins so had a 45min leisurely coffee at the staion before going off to Reading. I was there first to meet the rest of the girls so took the opportunity to try to buy a small radio for Laura as I'd sneaked hers away for Woody for camp so he could listen to CubCamp radio!! I knew my life would not be worth living if I did not replace it. John Lewis let me down twice in the same shop. They had only the display radio and wouldn't sell it ot me so they could order it in future for other customers!! Then I was trying to but short sleeved open necked blue blouses for Laura. They had every size but hers so have ordered it and so awaiting for their phone call now. I tried everywhere to buy a portable, headphone type radio but couldn't get anywhere until the last shop. I was so pleased and this one has the advantage that it can be used as a normal radio and a headphone type so really she has done better out of this deal!!
I met the girls and we sat at the pub for 2 rounds before going to a lovely italian restaurant. I'm so impressed with the eating places and shopping at Reading. How sad is that but considering what I remember about it around 1984, it is truly unrecognisable!!
I had 2 glass of wine spritzer at the pub and half a bottle of red at the restaurant. As you can imagine with that and the steroids I was in a bit of a buzzy state. IWe walked back to the staion and realised I'd missed the train and needed to wait for 50 mins so we went back to the pub -for a coffee!! Somehow, I still managed to miss the next train as I couldn't see Platform 7. I could see Platform 5 but Platform 7 was round the corner so I missed that train and had another 1hr to wait for the train. What else could I do but have more coffee and sober up!!! At least I am well used to waiting in chemo and being outside in the warm with the coffee is far more preferable and was quite starngely enjoyable!!!
Monday - AJ and Laura had their haircut. Laura's looks so much better. Her fringe has been feathered and it looks so much better. I eventually got to work about 11am and then had lunch out but I din't leave till about 330pm so they did get some work out of me!!
Tuesday - I had my hair straightened. It cost £10 at the local hairdresser which seems extortionate but she has done a brilliant job. I usually pay only £3-5 in town but it looks so good I'll have to go again and see if I can renegotiate it I think. It must have taken her about 10 minutes at the most!!
The kids went out with a neighbour and her children and a dog she is looking after. They had a whale of the time whilst i was having my hair done. Somehow, I was still last to get to the owl and otter centre in the New Forest and my sister had driven 140 miles to get there!! It was lovely. we saw baby snowy owls being fed by their mum. The tearing up of the chick was not so pleasant but as Laura says 'nature is cruel'. the otters were cute and we saw them being fed and we also saw the keeper release 2 owls back into their enclosure after it was cleaned and repaired. There were also a lot of wallaby, deer, boars and pine martins, weasels etc. We saw the otters being fed and listened to the keeper talk which was actually a good one for a change. It was a good 4 hours we spent there so well worth it. It did warn you that 2 of the deer were prone to eat clothes and guess who they tried that on - yes me. First of all it wanted my handbag strap and then my T shirt!!! Everybody else found that funny of course. It was lovely to see to see lots of baby bluetits, nuthatches and a greenfinch plus some butterflies. the only down side was that the wasps are back -grr - what is the point of wasps. I know we've got that book that is suppsed tot ell us but I think I will have to dig it out to see what the answer is!!
Had a bizarre experience in Kentucky Fried Chicken in Shirley. They only had 1 packet of ketchup, 1 children's toy, he forgot to put the chips in the kids meals, gave us the wrong drinks!! It was defiantely not his day!! Dom't think we'll go there again then!!

Friday -I had ordered a new mattress for woody's bed and it was supposed arrive between 8 -1pm. Guess what time it turned up - 1230pm so the morning when it was nice was spent in the house waiting apart from a quick trip to the GP.
He had a medical student with him and was teaching her about the different sounds my chest makes. It sounds different on the left from the fibrosis damage to the central and right where the cancer is apparently. I just knew it was very strange having 2 people listening to my chest at the same time. As I have said before, I'm really happy to have students in with me as long as they ask my permission first. I usually learn something as well.
He was happy for me to fiddle with the steroids till I get the right dose. I was definately much more wheezy today and felt that the 4mg was not doing enough and the 8mg too high so will try 6mg for a couple of days and then reduce it back down to hopefully 4mg.
Very much the 'expert patient' in the government's grand scheme of the Health Service.
He was also encouraging me to write to this other tykerb trial guy as I have my letters and scan results and test out what he thinks about me seeing him probably privately. Definately a DIY Day then!!
At lunch time, I got a phone call from the Occupational Health lady at the hospice. She could supply me with a wheelchair, special seat and a blowup mattress as she was concerned that i did not have a 'special mattress' for my bone mets. No-one has ever mentioned this to me before that there was one. Apparently, if I talk to the district nurse she can get me one so hubby will be very happy as he likes soft mattresses!! Definately worth chasing that one up then!! By 430pm, it had all arrived courtesy of a volunteer at the hospice so if you ever feel like donating cash to the local hospice please do as it really does make a difference to cancer people like me and their families.
It seems you either can get everything or nothing. I seem to be able to get any aid I need but my housebound friend who can not travel can not get seen by a dentist for 3-4 months and her filling has fallen out. She gets no help - how is that equitable in this modern NHS?
I also went out to test out more disablity scooters. I went to the local one first where earlier in the week i had met a lovely guy but this time was met by 2 elderly women who obviously took umbrage that I disturbed their cosy tea and biscuits on the lift up armchairs. they were so unbelievably rude. Just pointed out the other scooter and said the other one that I had wanted had been sent back to Portsmouth so there was no way i could see which was best. They also were very unhelpful about the mattress protector I had ordered so I left and never want to return or recommend it which is a shame as fundamentally I want to deal with local suppliers and not let the world of supermarkets have everything their way.
I then went on to a bigger shop where the service was far more professional but as he said I'm very limited in choice for portable ones as they seem to be designed for the short legged!!! He also had the mattress protector I was looking for and was helpful about and informative about it. Anyway, I found one that seemed to fit me but not the price so went back to internet shopping and found a site that said they would undercut any offer. I filled out the form via the internet and was just getting the tickets for The Simpsons when they phoned me back and I've got it at half the price in the shop and it will arrive on wednesday. Sorry - that is double standards but these things are not cheap and we do not have that sort of money to support the local man this time. I will try again with other purchases. Actually, we did - we supported the local pet shop, and not the new one that has set up. Our part of town is so small I can not see how it can support 2 pet shops and the original one has a lovely man running it so want to support him.
I really enjoyed The Simpsons and so did the family. It was lovely to do something as a whole family again. We did the obligatory MacDonalds trip as well so the kids were well pleased.
Then came the evening of mattress upheaval. Hubby was out helping his dad with furniture moving so it was me and the kids doing good team work for once. Taking AJ's mattress out first and then getting Woody's down from the top bunk and into Aj's bottom bunk. Poor thing -he is really distraught that we are throwing his old mattress away but it has had too many spillages on it and it reeks. Will see if this mattress protector works and then buy him his own new mattress as it is unfair really.
Then the big effort of getting the new mattress out of its double sealed wrapper and up onto the top bunk. we did it so was really pleased that the 4 of us had succeeded in doing team work so well.
At the end of that effort, would you believe that Woody then spent the night on the floor of his sister's room like he has for the last week!!!
Saturday and hubby worked so after a few quick trips out to the Barbers, local junk shop and pet shop again, the sun had stopped shining and we eventually went out to the Shoreline where the children all played happily and we bought pathetically small ice creams. What a rip off - about the size of an ice cube!! When we got back home, our local Mr Whippy came round so we had another one about which was about 4 times the size with toppings for the same price!!
Spent the rest of the day trying to pack for Woody's 100yr scouting camp. Wonder if any of his clothes can be saved after that as it will be so muddy - well maybe he might only wear 1 pair of trousers like he did last time!!
Tried to support the local shops but the radio we bought did not work and was shut by the time I realised that and couldn't get a torch so had to go to Tesco's. That was interesting as the big travellator kept stopping - about 5 times in 15 mins as they were having intermittent power cuts. It suddenly stopped when Woody and I were half way down and the force of the stop made us lurch forward that we nearly fell. Wonder if anybody did actually fall.
Off to meet girls for lunch tomorrow (relaxing train journey i hope) and hubby taking Woody to cub camp and the other 2 somewhere in the forest for paddling and other adventures.

I'v managed to be out in the garden inbetween showers and it has been so wonderfully peaceful. No noisy neighbours, no self obssessed DIYers, no kids playing out - just twittering birds, frogs and pond skaters.
The baby sparrows have grown up but are still just as unable to judge when a branch is strong enough to take their weight and they flutter for quite a few seconds whilst they decide if it will take their weight. Oddly, they tried to get onto a flower spike of a Bear's Britches plant and failed abysmally!! We also seem to have a new fledgling but not sure what. Laura thinks it is a baby robin. It has a robin's tail but a speckly chest and as I can't see its parents, I've got no further clues.
Some of the tadpoles have now changed to baby frogs and are very cute. Some have even braved it to pond no.2 which is a long jump for a frog that size- about 1 metre, I suppose. We still have quite a few tadpoles though so I suppose they will just die as I can't see how they will change now.
Much to our surprise, we know have a leech -presumably it came in with some pond weed and 2 pond skaters. They have only just appeared but from where we do not know!
Otherwise, our garden looks quite sad. Most of the lavendar is dying off, the jasmine is not blooming and other plants have just lost their blooms really quickly. I managed to pick 5 sweetpeas and that looks like that. The agapanthus is just OK, the passion flower is doing its best and the astilbe is also doing its best to add some colour but my blue hibiscus is now the highlight and has 5 blooms so hoping for more.
The weather forecast looks slightly more hopeful for next week so maybe I can spend more time in my little sheltered spot eating ice lollies watching wildlife in the city garden.

Sunday 22nd - turned out to be a warm dry day which was a bit of a shock after the forecast. The kids spent a lot of time out on the old fashioned space hoppers. This mainly worked out well until they use them as battering rams!! It was good to have a day where we could just sit and relax and spend time outside and not sheltering away indoors.
Am still quite manic due to the steroids but due to decrease to 4mg tomorrow so hopefully will be more with it. I find I'm not getting to sleep till about midnight and don't want a sleep in the afternoon which is lovely but feel I'm wasting this energy as unable to settle to anything.
Monday - went shopping with my sister-in-law and even though we stopped for coffee and lunch and was probably out for about 4 hours, my feet definately knew about this. However, the Vit B and alpha-linoeic acid are definately helping and I feel less spaced out today. Hubby was off today so he looked after them.
Tuesday - work in the morning and off to look at disability scooters in the afternoon. The thing is I think they are designed for short fat people and definately not for someone who is 1.73m and has exceptionally long legs. I want one that is fairly portable as well and that can stay in the car. It is hard to find a good range. The shop prices varies as you would expect and the ones I'm looking at are around £700 - much more than I thought as I thought I would be able to get a second hand one. The internet is much cheaper but then it is a case of finding the model I want and tracking it down on the internet as they retail there for about £500.
Hubby got very depressed when we were discussing this as it is the reality that he can not get away from.
Apparently, the disabled parking bay line team came round today but our car was there so they couldn't do it. I phoned the council and spoke to a lovely man but what an amazingly inefficeint system.

• You can not book a slot or even a day.
• They will make about 4 attempts before leaving a note and asking you to contact them
• You contact them and then they deliver cones so that you can put them outside your house
• They come back and do the lines

When I suggested that I leave my mobile phone number it was if nobody had told this man what mobiles were - he sounded so bemused. He couldn't understand why i thought an appointment would be a good thing - is this just me or does it seem ludicrous to you that there is a line painting team roaming the streets incase there happens to be an area in the city they can paint!! Eventually, he suggested I talk to someone else in the morning which I did. He was just as vague but when I said where I live it is obvoulsy near the paintlining depot as he said they could swing round first thing in the morning and do it then but he would deliver cones by lunchtime and he would do the lines on thursday. Well, that afternoon, they just appeared and did the lines so in the end it was very simple but what a waste of our council money!!!

I spent the afternoon, food shopping and getting some pencils etc for AJ's new excursion into the Junior school.

In the evening, I went down to my friend's house for her to do the ironing which was silly as she has just had an operation on her hand but she did siupply me with a lovely meal of minestrone soup as hubby had cooked a very pathetic meal of a piece of fish about the size of a fish finger and about 10 chips!!! Not the thing to do when on steroids!! Anyway, the minestrone soup was very filling and also low calorie - can't say the same about the wine though -shame!!

Today - thursday - Laura and AJ were with friends so had Woody at home who was very helpful. I resewed all his Beaver badges onto his cub blanket for camp on sunday. That seemed to take me all day - it's cos I've lost the feeling in my fingers it makes it difficult. I also managed to order a mattress for Woody and order tickets for the Simpsons film tomorrow and contact Sail4cancer about the Bank Holiday Day out.

The hospice nurse came round and she suggested I increase the steroids to 6mg as the 4mg is not enough to fully help my wheeze as it has returned slightly. Difficult to know if it is the weather but I think I do need the 6mg to control it better. She suggested I take it all in one dose cos then hopefully, I won't be up half the night (2am last night!!). Not sure if the GP will agree or if I will have to phone the hospital for permission!!! Am also going to ask about a private appointment with this consultant who appears to interpret the criteria more widely than other trials centres. Expect he won't make a decision about this either and will want the onc to do it.

Tonight, I've been to the cub's info night about the Centenary camp - it is apparently under about 3 foot of mud at present and they have had to change the camping arrangements. There will be about 3000 cubs, scouts etc there!!! Can't imagine the chaos on arrivals and departure day. They do have 2 days out so that will help -at least they can dry out on the coach then!!

Looks like it will be a girl's lunch out on sunday rather than the family bbq , my breast cancer group were planning as the hostess has been flooded and the weather does not look good. Oh well, will hope one day it dries out and we can have a normal summer day out.

Have booked to go to a Travel Lodge in Eastbourne so I can take the kids to Drussilla's Zoo again. Thought it would be too much to drive down there, do the visit and then drive back and the kids love staying in a hotel. Think it will be a shock after the 5* luxury of Greece though. Was hoping to get the scooter by then but don't think that will happen especially as the postal strikes will delay my applications for grants for my scooter.

Will try to go to bed early but just not tired and don't have the bretahing capacity to do anything useful and too restless to do anything like my cross stitch or photos!!

Well as I said last post my feet really suffered and I found it impossib; to walk for nearly a week. I got loads of blisters and my feet still look very red!!!
I went back to see my onc on the thursday as I was due to restart the chemo but he refused as he said my feet were still too bad. I felt very happy about that as I was feeling tired and my feet were so sore still. I was in and out in an hour but had to go back a week later at 1230pm.
That evening, it was the twins music evening and Woody did his first guitar solo of the Saints go marching in!!!He was so proud of himself and I was proud of him as he didn't look nervous. Unfortunately, I got very oveerwhelmed before the concert started by the sheer number of people, the heat and my painful swollen feet so people dashed around and very kindly bought me a special chair and another chair for a footstool so felt even more tearful after that!!! The other mum's wanted to know what was wrong but none can believe how ill I am because I do not look like a stereotypical cancer patient as I have hair, am overweight and have a good colour courtesy of Dove's summer Glow!! I got talking to a nice mum that I know Woody talks to and I told her the kids didn't know how ill I was but she obviusly told soemthing to my son as he came home the next day saying he didn't know I was dying! I was mortified and really upset this had happened. as Laura is still so upset at night, Woody did not want me to tell Laura so have not gone as far down the line with her or AJ. Have told the elsa what has happened and seen the social worker but still back out of telling them. i just want someone else to do it but of course, deep down I don't really want that. I know I must do this.
I spent most of the week very quietly and the weekend quietly apart from spending time with Woody practicing his magic tricks for the Beavers on the monday!!. We decorated his magic box and came up with a routine and a magic box. Hope it goes well!!
Poor hubby had to unblock the sewer again and then 2 days later as I was flushing the loo, the handle broke and even after detailed instructions I still couldn't work out how to flush the loo by lifting whatever it was!!!
I went out to Frankie and Benny's on tuesday night and had a lovely smokefree meal there. What a new lease of life this smoking ban has given me!!
I got a phone call about collecting the car on wednesday and a friend kindly took me up to the garage to collect it. However, there was a big scratch on the windscreen so they had to replace it and i came home in an automatic diesal sport astra. Interesting experince and not one I wish to repeat!! Eventually got the car delivered to me with extra petrol and a bunch of flowers!!
Woody was brilliant at the magic show even if the routine did last only about 15 mins. he was very confident and actually spoke loudly so was very pleased!!!
It had been AJ's last week in infsnt school so wednesday afternoon I sat through 1 and three quarters listening to a rendition of Little Red Hen. The singing and dancing was good and this time I could understand what AJ was saying but when he wasn't involved in the acting, he spent the time pulling off the paper tissue off the pig mask. He was a pig and we had been told to provide your child with a pink t-shirt and black trousers. This I did, feeling very sorry for my macho son, only to discover that the other 2 boy pigs were wearing white t shirts and they were teasing him about wearing a girls tshirt so went in and gave him a white one.
This week I've been back to work and went to my policy ratification meeting. Seem to be getting better at producing work which is accpetable to the meeting so pleased with myself.
Yesterday, I went to chemo with a different friend and one who has had a different sort of chemo. She was brillinatly supportive and looked after me really well so thank you.
I saw the registra who surprised me by saying that they are now 'recycling' chemos so could have a different sort of eeh chemos I've already had - hope my heart holds out that's the worry for me. She also suggested I have steroids as the sort of lymph spread I have causes inflammation so steroids might help. Have started this today so have been in a happy, buzzed up mood and it did help -well for about 3 hours. Good job I had them though as I had a very miserable time at the family planning clinic. i will spare you the details but it was not the doctor's fault as I know she is excellent, it was just my body misbehaving again!!! Anyway, the steroid induced euphoria was defnately a plus. However, this afternoon as I took the second dose, I was really restless so took half a lorazepam to bring me down to earth now!!
Apologise for the typos - using laptop with broken backspace button so will re-edit it another day when I have a functioning computer and a brain that is not fuzzed about with steroids and lorazepam. (have re-edited this now - wow -what a lot of typos -26.7.07)
Our meet up in Hayling Island has been postponed due to the wet weather and flooding so hope we can get together soon and hope we can meet next sunday with a different group of friends. I need to socialise to keep me distracted.
Sure I have other things I need to say but will do that another day - genetic testing springs to mind.
Hope you are all well and can understand this ramble and the typos!!
Kate

It has been a busy week and today I am paying the price for my overactivity. My feet are blistered and look completely sunburnt courtesy of the xeloda!! (Of course, the fact that I have been walking a long way has nothing to do with this at all, you understand!!)

Tuesday, I was struggling with the concept of writing a protocol for privacy, dignity and respect when a friend phoned to invite me out for lunch. this was a much better than prospect than struggling with rationales.Hopefully, we both cheered each other up - I definately felt better for lunch out.
Wednesday was not a good day. It was transfer day so AJ had his first taste of junior school which he loved. For some reason as it was dry, we walked there. This is about a 12 minute walk but it was too long for me and I was so wheezy when I got there that there was no way i could walk back so had to hunt someone down to give me a lift back. I then went onto work and was nastily surprised that i had not done as much to the audit report as I thought.
When I got home, I found a letter from the marsden rejecting me for the tykerb trial so was very upset and went to bed before collecting the children plus 2 friends who were coming back for tea and to be looked after whilst their mum and myself went to the junior school parents evening. In the middle of chaos with cooking tea for 5 children, the chirpodist turned up. I had totally forgotten she was coming so we had to squeeze into a very small space for her to sort out my manky toes. They felt so much better afterwards though!!
We had to go back to the junior school for the customary talk by the head and teachers etc. It was better than I remembered when the twins went up as all the teachers got a chance to talk rather than just the headmaster. We also met the class teachers and bought the junior school jumpers!! I have to say, some of what the head was saying seemed very inappropriate as it would put parents off and not encourage them to keep their children in school. He went on about the importance of punctuality and missing school and said somehting about if you were late every day by 30 mins that equated to 3 days off each term and that stats proved if you missed school, you did poorly in the sats tests in yr 6. Well, I suppose that is fair comment but then if your child is off sick for a while the school never send work home so they never help you to get your child back on track - that's inequitable.

Thursday - Woody was definately under the weather. I think it was more of a 'mental health' day rather than an illness day. He has been very stressed about going to Yr6 and going away for cub camp for a whole week. I think he just needed a break. I then had to get to the station to pick up my friend who was coming with me to the hospital to kick arse.
I think if the traffic cameras were on me then I think i would have come up as suspicious. Firstly, I went to the wrong side of the railway station and so had to drive around the oneway system to getback to the other side. Then I found the train was later than we thought so i drove off again to the other side for a coffee and back to the station. after, I picked up my friend we drove to the hospital via the one way system. I think I must have done about 2 extra miles and passed the same lot of traffic lights 3 times in 2o minutes!!
We waited about 2 hours to see the chief onc. He was sympathetic to a degree about the lack of progress on the tykerb issue but wouldn't be drawn into certain conversations about when or if I would be eligible. He listened to my chest and agreed that you could hear a wheeze. He then spent a lot of time looking at the Ct scan and he thinks he can see something on the right side of where the windpipe divides. In fact, both myself and my friend could see it so it is not that small and I don't understand why it has not been reported. He will discuss this with the radiologist and then the chest medical team so i can have a bronchoscopy to see why I can feel stuff moving in my windpipe at high chest level and why i am wheezy. However, even if they discover something I will still be ineligble fo tykerb - I don't understand why. I challenged him about their honesty with me and he said they had always been honest. I pointed out I'd never been told about the fluid on my lung or the rib met. he said that they told you the most inportant things and so left out minor things. How is that being honest??? I want to know what is happening and I have always made that clear. He didn't think my wheeze was allergy or linked to the new growth on my strenum. Somehow, we never got round to discussing this new spread in my bones. I think the attitude is the bony ones won't kill me so why bother investigating!!!
It then became very hectic on the way home. Firstly, I stalled the car at the barrier and had to be pushed out. Then we had a rush to collect AJ from infant school in the rain.Come back to hnage cars to the people mover as we were collecting the same 2 friends plus Laura. Luckily, hubby was home so could collect Woody. My poor friend - she has a 16month old so it was a bit of a shock having 4 chatty and giggly children in the car and house. She was brilliant at making us cups of tea and toast as I was taking the 5 children out to the Moscow State Circus. Firstly, I had to drop her off at the staion and then off to the circus in the pouring rain. The circus was great fun even though they had cocked up our tickets. i bought 6 tickets but they had only allocated us 5 seats so we had to change sides. I think we got better views but we had some very annoying little children behind us. We got home about 730pm so a busy day.
I was happily chatting on the phone to my sister when I looked out the window and found 5 men plus a dog wandering around the garden and looking in all 4 sheds. This was the local morris minor owners club meeting which was supposed to be in the pub but relocated to our garden before returning back to the pub. It looked very suspect with 5 bearded men and a dog rooting around the garden. i think it is an unwritten rule that to own a morris minor. a beard is necessary!!! Good job I was fully dressed then!

Friday - hubby and I went to Hampton Court Flower Show. We had exhibitor's tickets courtesy of a friend so we had a quick entrance and could eat in the exhibitors' restaurant which was so less crowded. The show was brilliant and it actually didn't rain!! I wore my trusty crocs but there were so many people in posh frocks or suits and welly boots - starnge combo!!! We'd forgotten to take the chairs with us which was a good job as we bought so many plants and a lovely iron dragonfly and frog for our garden we couldn't carry them all. We ended up buying a pink basket on wheels - a certain unspecified amount was going off to Breakthrough Breast Cancer - umm - felt a bit suspicious that they will actually do this. Anyway, it was a useful way of carrying the plants. We got home about 930pm and I was absolutley shattered. Nan and Grampa had picked up the children from school, given them tea and bought then home and they were all in their pjs when we got back. It was such a big help so thank you. Grampa also picked us up from the station so that was a huge help as well.

Saturday and hubby was working. I got up at 7am which is unheard of at the weekend normally. Quick gathering together of drinks and biscuits and off to the Co-Op for lunches as we were going to Lego land.We got there about 10am and it was so busy already. Legoland were not sympathetic to disabled people in that it was only if a child had a disability that you could get a priority on the rides. Eventually, they stamped AJ's hand and so we got round it that way!!! We met my sister, her husband and their 2 youngest daughters so we were a big party.
It was really good. Mini-Land has changed and now London is on it with the Tardis. Dr Who, and Dalek Zeck on the Canary Wharf Tower!! There was an accident on the moving bridge as a lorry tried to go over the bridge when it was coming down so the driver's cab hung over the gap and the bridge came down on the lorry. We got a Lego man to fix it - he was carrying an array of tools and a kneeling pad!!! It was funny to watch as other lorries were still on their route to go over the bridge and so there was a traffic jam at the roundabout!! Good to know even in MiniLand, LegoLand they wtill have traffic problems then!!!
I went on the Dragon's rollercoaster ride and it was brilliant. We also did the Fairytale boat ride which was funny as my brother in law and I sat in the back and our combined weight made the boat tip up as it was only middle niece and AJ in the front!! we also did the pirate's water ride and the 2 nieces, Laura and AJ went on the big Jungle Rollercoaster. You could hear them screaming all the way round but it didn't deter them as they did it 3 times!! Woody, AJ, youngest niece and I went off to the fire engine part. It was exhausting as you had to pump this lever to get the fireengine forward and then to get the water out. I was huffing and puffing at the end!!
We eventually left at 630 and after a stop at KFC for tea, we got home about 930pm!!
Sunday - I did loads of washing cos of the rain earlier in the week. we watched the Tour e France go through Kent and past our old haunts of Tenterden, Great Chart and the weald. Then we watched the F1 before going out to a bbq with our friends. This turned into a farce as hubby had to go back to get the birthday pressie and card and margarine!! The friends had forgotten matches so had to go to buy them. Then when it was time to light the bbq, it wouldn't light and then it rained so we had a quick rush back to the car and to our house. The men were determined not to let the rain deter them from bbq duties so under the sun umbrella and ceanothus, they beavered away trying to light theirs and ours bbqs. By this time, us girls had given up and cooked the sausages under the grill and by the time the bbq had heated up enough to cook on, there was only the lamb chops to cook. The adults sat outside huddled under the umbrella and ate our food. It must have looked very strange with 4 people huddled under the umbrella eating in drizzle.
Today - monday - my blisters are all over my feet and really sore so having to sit with my feet up which is probably what I should have been doing last week rather than roaming around all the places I went to. Will I never learn to rest - no -pigs might fly first!!!

It was hubby's parent's Golden wedding Anniversary this last weekend.
I spent friday morning having coffee with a friend - not in Starbucks this time as there were no seats and as it was raining everyone was just sitting there with empty cups and refusing to move and it's apparently not Starbucks Policy to make people go so you could sit there all day with one cup of coffee then - just goes to show what profit they must be making if they don't truf people out for hours after one coffee. I was so cross as I was upset over the onc's letter and I wanted my coffee that after complaining and getting a customer feedback slip that i will post to HQ not the local branch that I stood outside telling everybody there was no seats so we all went to another place which was equally as nice and less noisy too.
I the had to buy pressies and cards for the Golden Anniversary and just sobbed and sobbed in the card shop as I realised that we would never even get to our Silver wedding anniversary or even our 13th! The card shop staff just ignored me completely!!! Think I'd better go back to John Lewis then!!
We had a big rush to get out on time on friday night as first we had to drop Laura off at Sea Scout camp - luckily inside dormatories and with a proper kitchen so she wouldn't starve this time.
The hotel was beautiful and the food was lovely. I found it very emotional and found it difficult not to cry as the realisation hit me that this was not something we would ever be able to do.
The bbq had to be cancelled on the saturday so we all went at different times to meet different people and drink champagne!!
Then back to watch Dr Who. It had been a tense day all round on the telly what with watching some Moto GP early saturday morning and then the big moto GP with Rossi keeping us all waiting to see if he could overtake Stoner.Woody and I were so relieved that he did and Hayden came third so was pleased for him too. Woody and I amused ourselves with making up songs about the other racers crashing which is a bit cruel but a lot of fun!! Hubby was at work and AJ at a friend's house so we could nake as much noise as we wanted!!! At the end of the race, I found that I had a headache as I had been clenching my teeth so hard - how stupid is that!!! Then Woody and I watched the qualifying for the F1 and that was exciting too.
Then the finale of Dr Who for this season - what a day!! What else could I say - Rossi, Hamilton, David Tennant, Johm Simm and John Barrowman all in one day - no wonder my breathing couldn't cope!!!
Will have to go to bed to calm down now with all those thoughts running round my head. Just hope I don't dream of working for Customs and Excise again - catching toads and frogs - what exactly is going on in my head!!!

We've had 2 unsuccessful trips out to go crab fishing. No matter how we try to judge the weatheer, it keeps raining when we get to the place to crab fish - it is so frustrating and also smelly having bacon bits in the car!!!
i actually went swinming for the first time in months. I thought my blood count was probably not too low and it was wonderful. I mainly trod water and did a little 'ladylike' breaststroke as in keeping my head out of the water so i wouldn't swallow or bretahe in any of the water incase of infection. I did have to wet my hair as the goggles pushed my hair into a very Jeremy Clarkson style. AJ is so confident in jumping in and touching the botom of the deep end althoug he can only seem to swim about 5 m before he neeeds to hold onto the side. I'm sure he can do it but he just has got into the habit of doing this. I then , of course, spent the afternoon in bed!!!
I was very surprised to get a copy of my referral letter to the Marsden and it was not a pleasant surprise. furstly, i find out that my initial biopsies showed necrotic ie rotting and dead tissue. If I'd known that I would never would have had chemo first and then I find that I was 'reluctant to start taxotere' - excuse me Mr Oncologist but it was you who was reluctant to start taxotere and it was only when I developed the skin spread so quick did he agree for me to have that. Then I find he ends the letter with 'i guess she is not eligible for the tykerb trial as there is no progression!! So in that case, what is this extension in my rib and what is happening in my sternum and behind my aorta then!!
After posting on my support forums and speaking to the hospice nurse, I am now going to the hospital with a friend off the forum to challenge this letter's contents and to get him to phone the marsden and speed things up and to investigate this strnum thing. He also doesn't mention the fact that I am so wheezy continually. I've tried ventolin - just speeds my heart up. I've taken anti-histamine - ummm might help a little but not much. I've even resorted to lorazepam to see if it is stress - that just makes me sleep and have trouble co-ordinating myself and my speech when I wake up.
It doesn't help that when I asked hubby what my breathing was like at night and he said it scares him as I'm so wheezy and noisy he doesn't know if I will keep breathing through the night!!!
Wish me luck for thursday!!