I'm writing this at 4am as woke up and couldn't get back to sleep!!
My arm doesn't hurt as much now but I've still got no feeling or movement in my left thumb and index finger so typing with my ring fiinger of left hand plus all fingers on right hand so warning more errors than usual then!!!
Well, the weekend was quite peaceful especially as I was living off valium and oromorph!!!
Bank Holiday Monday was our Sail4Cancer day out. For some reason it had been changed from Chichester to Redhill. This was better really as it was a watersports centre on a lake so no waves or strong winds to contend with. Plus it meant both my sister and I drove for about an hour to get there. It was a brilliant day. All the children and adults got changed into wet suits plus life jackets - definately a huge range of shapes and sizes in our families and i'm not saying more than that!!! I had a life jacket as I was going out in the rescue boat as my feet and arm meant I couldn't do any but it meant I could be close to the action and stay dry!!!

They first of all tried dinghy sailing in Pico lasers which are very tiny. Hubby and AJ were in one, sister and bro-in-law in another, then Woody and older cousin and Laura and same age cousin in another. Apparently, bro-in- law (to be knwon as bil for rest of post) fell into the water twice trying to get into the dinghy!!! All I could see was all of them sailing very slowly around the lake in a very leisurely way but they all enjoyed themselves and I could chat with them from the rescue boat. They then tried kayaking which was great fun to watch. Poor AJ tried his best and at first did really well but he got tired quickly and so sat with me in the rescue boat where he was much happier. Kayaking was hilarious to watch. Poor bil capsized at least twice and unfotunately, I couldn't stop laughing -I'm so sorry bil but it was so funny. My sister kept going round in circles so we towed her to a different part of the lake to see if that helped -it didn't!! Woody did really well and once Laura had calmed down she did really well too. The star of the day was my youngest niece who kayaked really well and she had never done anything like that before. Unfortunately, due to the wind she kept ending up in some bushes but she did so well. Older cousin was good too. Hubby has kayaked before so he was good.

We then had lunch which was provided free as was the drinks.

After lunch, they tried windsurfing. I was amazed by how good they were!! They could all stand upright on the boards and all managed to actually windsurf across the lake. Again, youngest cousin was so good but kept ending in the bushes cos of the prevailing wind. In the end she learnt how to turn her sail round so she could out of the bushes all on her own!! Poor AJ found it too tiring so after a while just played in the water or sat with me. Everyone windsurfed across the lake albeit at differnt speeds but I was so impressed by them all.

Sadly, the session finished at 430pm but everyone was rather tired anyway.

It was an absolutely brilliant day out and we all laughed so much. I think everone came back with bruises but we all enjoyed it so much. The teachers were brilliantly patient and so good at teaching them all and making sure everyone was OK.

If you are eligible for a day out cos you or your family have cancer, I would really recommend it.

Back to reality on tusday as I went to see the chest physician. The consultant was lovely and couldn't understand why I'd not been seen as I was an urgent referral and should have been seen within 2weeks!! Anyway, he feels some of my wheeze is allergy - l think there could be an element of allergy but the main problem is caused by the cancer, He rushed me through to have lung function tests which weren't brilliant but not disastrously bad so pleased. Anyway, he has booked me in for a bronchoscopy on monday so have to be there by 830am for blood tests and have sedation and may or may not stay in the night.

I feel very mean as the children will have to go to the childminders first and it is Aj's first day at junior school but it must be done.

Saw the onc today who just was pleased that I'd had such a brill time and achieved so much. He has delayed my treatment for a week cos of my feet and the bronchoscopy so happy about that and he is happy for me to continue on these chemo tablets for longer.

Mum and i then went shopping for a bridesmaid dress for Laura and little suits for the boys.I threatened the boys if they misbehaved they would have to wear sailor suits or knickerbocker tr0users!! Thank goodness for motorbility as I could get all round town on their snazzy scooters!!!

Will have to go back to town quickly tomorrow as put 2 dresses away for laura to try on but they may be too small and they looked short of suits, Apparently, one bridal shop told me you have to order the dresses 6 months in advance and as we are renewing our wedding vows in october that's impossible!! There is another bridal shop just outside of town but it was closed on a thursday - fancy being shut on a thursday!! Monday, you could understand but not a busy day like thursday!!

Am also going to look at 1920s-50s clothes tomorrow so hubby and I can go all dressed up for Goodwood at the weekend!!

See you later.

PS - re-edited this on 7.9.07 - why did nobody tell me there were so many typos -you could tell I'd written it in the middle of the night and some parts were unreadable!!!!!

We did manage to leave home for cornwall at 730am - 30 mins later than planned but never mind.
The traffic was good and we got there about 130pm but couldn't get into the cottage till 4pm. We went to some caverns which were very impressuve and we all enjoyed the fairy grotto walk with fairies dotted aabout the woodland. OK - it was raining but it didn't matter but the poor car got covered in mud again.
Apparently, you can get married there but the bride has to wear a white hard hat and clamber down some very steep steps and then stand under an umbrellla to sign the register as the cave drips on you!!! Not sure I would do that!!!
We arrived at the cottage and had a lovely tea there cooked by hubby's mum. The only problem was that the door frames were very low so we kept hitting our heads amd as my brother-in-law had warned us, parking did require intimate knowledge of the width and length of your car!!
Sunday was rather a windy day and my inlaws were tired after their busy day on saturday when they had to move residences up and down loads of steps and do a big food shop. We explored the local beaches including Polzeath which looks wonderful and I know some of you have stayed down that way before. If you know of any local sites to the beach at Polzeath, please can you let me know - thanks.
On monday, we all went out to Tintagel Castle/beach/merlin's cave. I managed to climb to the top of the castle, up loads of steps and also clambered down to the beach where I had to jump over a stream and clamber over rock to get into the caves. I was just so excited at what I managed to achieve especially as I was reducing the steroids!!!! OK so I got the landrover from the top of the town to the bottom of the beach area but as i said I did do all that climbing when I was there. Feel I should now have a medal or certificate to congratulate myself!!!
Tuesday, the grandparents looked after our children all day and evening and they had a marvellous time on the beach. Hubby and I went to the Lost Gardens of Heligan. It was fantastic but very hilly. Hubby had to keep standing behind me to push me up the hill but I DID IT ON MY OWN 2 FEET!!! We went round the whole garden and had a nice cream tea to boot!!! Later on, we popped into Truro. What a change there - it's gone very upmarket. We went to the jewellers where we bought our wedding rings in 1995 and at that time, the rings were a reasonable price but not now!!! I loved the look of a dragonfly brooch - along with penguins, dragonflies are also my favourite. This brooch must have been about 2.5cm big and had saphires in it but it cost £350!!!!! He then showed me some butterfly earrings and they cost £200. We made a hasty retreat!!!
However, we did manage to find a fantasticc pizza place and as we were early, it was buy 1 pizza and get the 2nd one free!!!
After this, we drove onto to seee hubby's ex-landlady and had a good catch up chat then.
It was so lovely to have that time with hubby on our own. It made it such a special day. Definately would recommend Heligan but you do need to be able to walk up hills to appreciate the whole place.
Wednesday - surprise,surprise my feet were playing up and I'd got blister! Overdoing it as usaul!!! . We went to Crealy's which is a mixture of animals and rides (oh and it is hilly as well). I managed the viking ride boat thing twice and the log flume twice plus the sittting in boats down a slide twice. The rest of the time, I sat with my legs up, writing postcards or doing crosswords so I did try to have a bit of a rest and I had also got down to 1.5mg dexamthasone (steroids) and my breathing was still good!!
Thursday - we went to Widemouth Bay. It was a lovely big beach with good surfing waves and facilities like toilets and a cafe!!! It was also a good place to go rock pooling and Laura caught loads of litttle fish, little crabs and shrimps. It was a brilliant dy an i could spend a lot of time laying down in the shade so i was trying to be good - honestly!!
Friday - back to the beach. My blisters had also grown further which was a bit of a blow. I spent quite a while rock pooling with Laura and AJ. I thought i'd just got sand trapped between my foot and shoe but I was rather wrong there. On close inspection. the big blister that started between my big and second toe and underneath was full of sand!! We tried to get some first aid stuff off the lifeguards but it was obvious we culd not do this on our own so we had to abanon children with grandparents and went to a minor injury centre about 4 miles away. Much to our surprise, there was no queue and I was seen straight away. Unfortunately, the only thing the nurse could do was actually cut the top of the blister off, irrigate it and dress it. It was 3 x 1 cm big and about 3mm deep so quite big really!!! She was rather worried about me being on chemo and if I should have antibiotics but after phoning my hospital, we decided to leave it unless i do get a high temperature or it looks manky.We got back to the beach so hubby went back there and I sat in the car reading, sleeping and listning to Take That so i was quite happy too.
My foot actually felt better with the top of the blister missing than when it was filled with sand. Still, it did make it difficult to walk and the only shoes I could wear were my crocs but then there is nothing different in that!!!! I'd also developed a 2cm square blister on the side of the same foot and another blister of about 3 x 1cm between my big toe and foot on the other foot!!! So my walking was definately limited!!!
Somehow, we managed to pack the car the night before but I'd obviously overdone it as my left arm with the lyphoedema was much more swollen and I'd also developed continuous pins and needles in all my fingers but my hand han't turned blue so I just took loads of painkillers with special reserve port and slept well!!!
Saturday morning, we got up at 6am as we wanted to leave early becuase of the bank holiday traffic and we succeeded and left on time. Good job we did as the traffic in the other direction was horrendous. My arm was getting worse so took a valium in the hope it would do something to help the pain. Well, it must have done as i slept most of the journey!! I also thought if I did have a clot they would need to operate so stopped eating and drinking at 1030am.
Around Yeovil, I thought i'd better phone my hospital to say i wanted to be seen. Their initial reaction was for me to go straight to casualty in Yeovil. Me being me decided my arm wasn't blue so it could wait till we got back home. I phoned aagin when nearly home and they told me to go to casualty three which is what we did. I got there at 1130am and hubby took the children home and unpacked everything and did 2 loads of washing so think he deserves a medal and certificate too!!!
After sitting in a wheelchair for about an hour, I asked to be able to lie down as my hip was hurting and I couldn't raise my arm up enough for it to help the pain. Once Iwas on the trolley I promptly fell asleep again. I don't think I was seen by a nurse or doctor until 230pm who thought a clot was unlikely as he could feel good pulses in my wrist and the colour was good. I had a special ultrasound which showed no clots.My blood tests were okso they came to the conclusion that I had strained a muscle or trapped a nerve so came home via a taxi and been living off valium and oromorph since!!!
The odd thing yesterday was the casualty doctor and the taxi driver were all from cornwall - co-incidence or what!!!!!

We went down friday night which was a good move as we missed the traffic.
We spent saturday and sunday on the beach which was lovely. Folkestone beach has these little concrete shelter so we nagged 1 of them so that we could be out of the sun at times and have safe storage space. The children and hubby really enjoyed body boarding and making castles and holes and rock pooling!! I just enjoyed the resting - although I think hubby would disagree that I rested much as was still so fidgety from the steroids!!!
Anyway, during the week I did manage to reduce to 2.5mg so calmed down but still had the energy to enjoy myself!!!
It was so lovely to be able to walk and breathe relatively normally and to be able to get on and off the floor. Last summer was so awful as my secondaries had not shown up and my hip was so bad I couldn't even get my leg to move to change gears or walk more than 100 yds and when I did I was so breathless there was not much point of doing anything so spent most of last summer in bed!!!!
Hubby, brother-in-law, Woody and youngest cousin went to Dover Castle which was fascinating as now they have opened up the tunnels that were used for WW2 and I managed to do it all. W were glad to have packed a lunch though as the family in front of us had to pay£29 for 4 sandwiches, 4 pieces of cake and 4 small cups of tea!!
The other part of the family went to a zoo and enjoyed themselves.
We also went to the Venetian fete one evening. It is a carnival on water basically. The 5 mayors of the Cinque Ports arrived on a float - there was one man in the middle who didn't have mayoral robes in red but in black and he was huge - reminded me of Henry VIII and we wondered if the pontoon would tip up when he got off!! Fortunately, there were no disasters. There was also a 20 minute fantastic firework display which as wonderful so mum and myself could go 'ooooohhhh' and 'ahhhhh' together. We had had about a 10 minute shower previously but it cleared up and there was a beautiful double rainbow.
We also had a lovely meal with all my side of the family. the service was appallingly slow though!
I also had a lovely shopping day out with mum. It was so lovely to spend a whole day out with her doing 'normal' things - not sure if the bank would agree but it was good fun!!
We then had to leave friday afternoon so that we could come back to spend the night before setting off to Cornwall.

Well, after these postings all at once I suppose I should get down to business and tell you what has been happening healthwise.
Wednesday, I eventually recieved a letter telling me to phone the hospital for my chest clinic appointment which I did but they could only offer an appointment in september as we are way inbetween times. the urgent referral was done at the end of June!!!
Thursday, I went to the chemo clinic and got seen reasonably quickly but had to wait as my blood test was not back. It was an interesting consultation as always - conflicting info again.
Tykerb is now not being reviewed for licensing till the end of November now - wondered why it had not ben in the news!!
The onc was pleased that the steroids were helping my breathing but wants me on only 1-2mg and I'm still taking 4mg at present so will have to cut that down slowly. Worried that I will lose my increased energy levels and I am so enjoying being able to have a normal day that I can wake up and can function at 8am and function all day until 1030pm. I do not want to go back to having to struggle to get up in the morning and spend all afternoon in bed and go to bed at 9pm. Although, I know I am rather manic and fidgety and can not concentrate for very long on anything at present so do need to cut down the steroids so that I'm not looking like I should be sectioned under the mental health act. I have to reread and edit my emails and postings or else I just go on forever and repeat myself and have all incomplete sentences so will have to reduce whilst I'm away. I know I'm all sped up as I've also lost 5lb in 3 weeks and I'm eating a lot. I've also got lots of bruising on my legs and my face and ankles are all puffy so that is not good.
Anyway, now just trying to pack etc. Have fun.

I took the children away for the night on monday. I met my sister with her 2 youngest girls at Drusillas Zoo. It was a fantastic day. I used my mobility scooter all day which was a good idea. The kids had a wonderful time enjoying the animals and also doing the 'Zoo olympics' which involved comparing what you could do to what an animal could do ie Woody weighs as much as a porcupine and could scream as loud a something else. They really enjoyed it plus they did the climbing wall and looking for dinosaur bones!! It was a really brilliant day and well worth it.
My sister then went home and we travelled onto the Travel Lodge a few miles away.
I had booked a family room of double bed, single bed and a pull out bed and I don't ever remember saying what age the children were or they saying what size the pullout bed was. The bed was king sized and really comfortable, the single bed was fine but the pull out bed was basically the size of a cot mattress. It was just a plastic covered piece of foam about 3 inches longer than AJ and he is only 7!! He was comfortable but whatever would you do if your child was older!! The bath was tiny and the kids thoought that was really funny!!
It was located by a Little chef, a burger king and an all night garage so it was convenient in that respect. We had a burger king that night. I'm obviously fated with fast food places. They had no ketchup and so we had to sneak some from the Little Chef!!
We all slept well and ate the next morning at the Little Chef. I think it must be at least 20 years since I've eaten at a Little Chef and I don't think it has changed!! The service was very slow and a little grumpy but we just laughed at them.
We then went onto Paradise Park in Newhaven. On the map it looks small so I thought I'd walk round it. Big mistake as it was hot I'd taken a lot of drink with us and what with a longer walk in the heat and carrying a heavy bag, I ended up feeling very ill and nearly fainted in the indoor play area. Woody again came into his own and got the first aider for me. She and her assistant were absolutely fantastic. They gave the children about £10 worth of tokens for the indoor games, got me cold compresses and cold water and really looked after me. A totally different experience than when I fell over at Chessington World of Adventures when hubby had to go off to buy water for me as the first aider wouldn't give me any!!
We then tried to get home to meet hubby to eat out. Well, we got stuck in a queue and there was no diversions and all what was happening was that the traffic was crawling round in a circle. The problem was a lorry had shred its load about 2 hours before and they had shut the A26 to clear it up. After 40 minutes of etting nowhere and having seen that everyone was shouting at the poor police support office who had closed the road, I phoned the police who told me that they would be opening the road up in about 40 minutes and to go up the A259. I told them tht the queue was statioanry, there were no diversion signs and that the poor PCOS was really being shouted at and all they would do was send a police car to backup the PCOS!! Very helpful!!
Luckily, there was a Brewers Fayre on the roundabout and after not being able to find the entrance, I abandoned the car outside someone's house and we walked back there for dinner. By the time we'd finished, the traffic was clear and I had a clear run home!!
It was so lovely to be able to do 'normal' things this summer as last summer my hip was so painful and my breathing was so poor, I hardly left the house and it was so miserable.
The children have been sleeping in the tent and we've now bought a bigger one and I've even slept out there. It was brilliant. It reminded me of my Guiding Days and adventure holiday days. Even my breathing seemed better outside. Last night, I was outside at 130am admiring the stars - it made me really happy.

Mud -There is a poem in one of the children's books that says 'I like mud'. After last saturday, I'm not sure I agree!!
We had AJ's best friend for a sleepover on the friday night and then I had to drive over to the cub camp to pick up Woody. I thought it would be a good idea whilst we were in the forest to go for a walk through the stream in our usual place as it is good fun splashing through the puddles and there is usually a rope swing up to play on. It got off to a reasonable start - both young boys were soaked in a matter of minutes but it was warm weather so it didn't matter plus we had spare clothes. The rope swing was there and the 4 children enjoyed that. We then set off to the ice cream van following our usual route when we got to a muddy patch. Laura picked her way through and emerged the other side in pristine condition. I had my crocs on and just thought 'oh well, they'll clean off'. How wrong I was!!! AJ's friend just starting sinking in the swamp, Aj's welly boots got stuck in the mud and he was walking and sinking in mud. Poor Woody was trying to pull friend out but he kept sinking, Aj was sinking and so was I. Eventually, one of my crocs came off and broke and just disappeared under the mud hwich was scary. The 2 youngest boys were knee deep in sinking mud and it got quite scary!! I got to the stage where I thought we would have to ask for help from the firemen as it was sinking mud and I was getting very worried. Eventually, we got out but I was covered in mud completely. In all my years of camping and adventure holidays I have never been that muddy!! My feet were just mud balls!! The 2 youngest boys were competely mud bathed too. Woody was a real star and went back to the car to get towels and my welly boots so we could continue to get to the icecream van!! We walked upto the toilet block and managed to just about clean ourselves up enough in a sink about 6 inches wide so we could eat an icecream and then find our way back. On the way back, the best friend was running through the stream when he fell over so got even more wet and muddy!!
Once back at the car, we had to change clothes and clean up a bit more. Luckily Woody had a huge plastic bag for our wet clothes which he had not used at cub camp. We used baby wipes to clean up a bit and the children could change clothes apart from me. Remember this is my new car as well!!
I then decided there was no way that I could survive without my crocs so drove into town via going home and went to the shoe shop to buy more. Not one person stared at me yet I was completely covered in mud!!!! It made the shoe shop lady laugh though!!!
When I returned home, all the neighbours were out so they all saw what a state I was in!!!!
We had to bath the boys and poor hubby spent ages scrubbing the clothes clean. I couldn't get the mud off me in the shower!!!! Laura had to help me clean myself up and I had to soak my feet for ages.
So -beware if i ever offer to take your child to the stream in the New Forest - beware!!!