Tired out - Not surprisingly, I was shattered on monday and spent most of the day in bed. By this stage my arm was so painful, I couldn't put it down by my side or cut up food or use it functionally at all. The hospital were very unsympathetic but at least my cyber network offered sympathy. Overall, I'm less breathless and I can't believe the reduction in my bone pain. I've managed to walk to school this week. I've even managed to get in and out the bath and have reduced the amount of painkillers I've been taking. If it wasn't for my arm I'd have been really happy.
I spent 3 hours in Marks and Spencer on tuesday trying on various trousers. Why do they not do the cheaper trousers in long length in my size? I even managed to walk to the chinese take away that evening. I had a friend who I did my nurse training with staying with me on tuesday so that was good. We've known each other 25 years now - that is scary how fast that time has gone. The next day, i managed a trip round the local shops and thursday I popped into work for a few hours. Then I had a phonecall from the school and so had to pick Woody up who had developed a high temperature.
Thursday night, my neighbour and friend came over to give me some reiki. I felt so much more relaxed and better after that.
By friday, Laura was also poorly so AJ was not impressed at having to go to school by himself.
This caused complications as I had to farm the children out friday morning as I had the MacMillan nurse coming to see me. That went well but really was more of a getting to know me session.
Today, has been sad for me as I found out that one of my cyber friends died yesterday. She found out she had secondaries in her liver at the beginning of September and they seemed unable to stabilise her to give her chemo. She had been so well up to that point, it seems unbelievable that it happened so quick. Her children are of similar age and we were the same age and she was diagnosed only a few months before me. I'm so desparately sad for her family and friends.
I know I must really sort my affairs out now and quickly so that when that is done I can get on with my life and not have that pressure and worry. It's odd things that bother me - like my clothes and odd bits and pieces. I'm determined to get a funeral service sorted with appropriate readings and music. My favourite music does not seem that appropraite for a funeral so am working on that.
On to more positive things - have booked going toLondon with the children and husband and am off to a forum to met my cyber friends.

Meeting old friends - People who have only known me since I've moved here to Hampshire are always surprised that I spent 20 month working in the HQ of HM Customs and Excise. As with all of my memories, I look at that time through rose tinted glasses. I remember long lunches with lots of alcohol, trips to scotland playing basketball with even more alcohol and trips to RAF airbases and post offices. I'm sure I worked hard really inbetween these times and I really can't have been drunk all the time surely. Anyway, a few months after I started, I had to go on an EO induction course. (You have to bear with me - there is a logical strand here really.) I have to say I think this course was run by the most inappropriate trainers I have ever met and I have been on loads of courses so it ,ust have been definately bad. One seemd on the edge of tears and temper tantrums and the other one introduced himself by saying that he was studying for a psychology degree so would be taking notes. However, there was a sliver lining to this. I met 4 fantastic women (actually, we were probably girls then since it was 1986) who I've kept in sporadic contact with ever since. We all actually met up last weekend with our respective men and children in tow. Infact, the original 5 had now quadrupled to 20. ( 9 adults and 11 children aged between 4 to 13) I think the hostess was very brave as there were so many of us to feed and accommodate. Unsurprisingly, this had apparently been agreed in a drunken evening in a pub in London. Rather a common theme of alcohol here isn't there!!!
Our hosts lived in a converted coach house with a big garden and a trampoline. Luckily, the weather was kind and we did spend most of the time outside. Times had changed as unbelievably, no alcohol was consumed until quite late in the afternoon.
The weather was so good that we even all went down the beach and the children got in the sea. It did look at one point that Laura and one of the other girls were going to float off to the Isle of Wight but got them back.
Later in the afternoon, there was a great tent erection activity. We needed 4 tents and they were all different makes and sizes and as far as I recall nobody had ever put up 3 of them as they were either borrowed or new. It was achieved without too much bloodshed and tents allocated. Luckily for me and hubby, we got beds inside and our 3 children had a tent to themselves.
We managed to get the children fed and watching Dr Who so we could have an adult dinner. It was wonderful. Lots of different curries and enough rice to feed about 30 people and naan bread for about 20. The children helped us out with the bread. Not sure what happened to the rice!!
I'm pleased to report by the morning, I counted 11 bottles of wine that had been drunk and 6 bottles of lager.
To return back to the evening though. The children did settle about 10ish in the tents and little by little the men retired to their beds. Laura came in at 1am and then settled upstairs with us. The lack of men allowed us to relive old times and having chats like women do!! I'm not going into details here but I'm sure you all know what I mean. This went onto 3am. Not bad for someone who had their second chemo 2 days ago.
The men did the honourable thing in the morning and looked after the children while the women slept in a little bit (apart from me who woke up at 7.45am with cramp!!). I don't think anybody in the tents got much sleep as it started to rain very heavily at 5am. Apparently, AJ and Woody tried to get back into the house at 5am as they were frightened by the rain and lightening but the door was stiff so they went back to the tent. Hopefully, they've not been scarred for life.
The weather cheered up and it was back to the beach before a barbecue and home.
It was such a brilliant weekend and I'm sure we all really enjoyed it and a huge thank you to the hosts and all the organising that was done so that we all brought the right things. OK so we forgot the towels but we coped.

chemo day again - It had seemed a quick week since we last went there. Today I had a 9am nurse appointment. Hurray - the nurses always see people on time. WRONG!! She wouldn't see me till my blood tests results were in so didn't go intill about 10am. There was a different nurse doing the blood tests and she took 3 attempts and then none of them would stop bleeding and it felt as if my vein had popped. it still hurts today. I'm not seeing her agian. My confidence was then dented further by the site of another lady's arm where the vinarelbine had come out of the vein and caused a massive and very painful area which was ulcerating. She'd been in hospital 5 days and may need plastic surgery to put it right. That was enough to send mew over the edge.
Anyway, the nurse appointment went OK and will now start on a bone rebuilder to help with the pain in my bones. Trouble is I've got to decide whether to have the traditional one that takes 50 minutes to run through or go on a trial and have a daily tablet or an unfusion over 15 minutes. Although this has been a big trial, 5 women have had jaw osteonecrosis - basically the jaw bone dies and your teeth falls out!! I really don't fancy that. Difficult decision. She also gave me the number of the MacMillan nurses so that I can chase them up and she is chasing radiotherapy.
Eventually around 1pm, we were called in to the chemo room. Again, it was a different nurse and although I knew she was a nurse practitioner so had to be good, I'm finding it hard to trust people until I know them. They gave me a lorazepam which definately worked and I relaxed. Actually, I wanted to go shopping but time was short and I think being under the influence I could not have been trusted!!! I had a lovely sleep when I got home and my back pain went due to the muscle relaxant.
The children and hubby were very helpful -good job or they would have had no tea!! A friend had cooked us tea so that was lovely.
Woody and hubby spent the early evening helping me make a powerpoint birthday card for a cyberfriend whose birthday it is today and it seems everybody is ignoring it. Just hope her sense of humour is the same as ours.
I spent 49 minutes talking to my eldest niece. (apparently a short call) She talked me through setting up a new email account and I actually understood it and achieved it so well done Emz. We had a good laugh about people's unfortunate names and also discussed music. Times have changed - I could not imagine discussing current music with my uncle or any other adult at that age
Today, my whole right arm feels sprained due to the irritation in the veins and I think I've developed RSI from my overuse of the computer so I think this will be it for today.

Chessington World of Adventures - we missed going there last year and it was something I wanted to do so on saturday, we packed the car and went off. It was actually quite quiet so that was nice. We hired a wheelchair as I knew I couldn't walk that far and the hills would absolutely wipe me out. The only trouble was with this wheelcahir,Pete really struggled to push it and my huge weight up hills and I had to do the braking. The advantages of this was that Chessington does a concession for disabled guests and it means you don't have to queue for the rides. This was fantastic but sometimes it meant I had to climb some steps to get to the entrance. We did the Runway Train, Tomb Raider twice, Billy Whizzer (poor Laura got absolutely soaked on this), black Buccaneer (pirate ship), the waterflume and Bubbleworks. Laura and AJ loved the pirate ship ride. I did it the first time with them but it went so high I got a bit breathless as we whizzed around. AJ and Laura went back on it on their own and it was lovely to see them having so much fun. Bubbleworks turned into a fiasco. I slipped on the wet wood at the disabled entrance and really hurt my hip to the extent, they had to call first aid. All I wanted was a drink of water to take some painkillers but they could not provide this - hmm bubbleworks==water==bottles of water!!! I was told the shop could not give me some water as I would have to pay for it!! After about a 15 minute delay, we went on the ride and it was very sweet and I got rather wet.
I had recovered from this when we went on the flume ride. This was all going very well until some stupid 9-10yr old dropped a waterbomb from a bridge which landed on my chest and made me hurt my neck. Security was called but by this time, the culprit had gone.
We left about 5pm and drove back to Southampton and to a Brewer's Fayre for a meal which was lovely and relaxing.

Even worse than I expected - After my rather epic journey came a rather epic day at the hospital. My 10am appointment came and went and I think we didn't get into seeing the consultant until noon. As soon as we got in, we knew it was going to be bad news. The ct scan showed widespread secondaries in my lungs as it had gone into my lymph system. There was also a probable small one in my liver plus all the bony secondaries in my pelvic bones. He wouldn't give a time limit as such but when we asked about booking a holiday for next year, he said wait nearer the time. He then talked about a few months to a year so it was rather a lot to take on board. Rather an understatement but it is difficult to put into words what crossed my mind at that time. He wanted me to have a chest x-ray to see if the spread could be seen there rather than have CT scans again to see if the proposed chemo is working and a liver ultrasound to confirm the secondary in my liver. We then went off for these tests and came home as there were no nurses to do the chemo.
We then returned the next day so that I could have the new chemo. This went OK but I don't know how many veins I've left as I need to go for 2 out of 3 thursdays and it is very corrosive to the veins. The worst part of this chemo is low blood counts and constipation!! Oh well, now have a huge supply of laxatives to take if needed.
Beginning to tell people now and it is very hard. I really can't believe that they think my life is going to be so short. I know I don't feel completely well but I don't feel that bad either. Just short of breath when I walk and the pain in my hip and pelvis and I am tired. I suppose that does sound like I'm poorly doesn't it.
On a good note - now have bridge tokens to get me across the bridge free!!

Off to Norfolk - I had an invitation to go to Norfolk for a few days before I got my CT results and bone scan results. This seemed a brilliant idea as I needed the distraction. My friend had even looked up the coach times and prices so all I had to do was book it and arrange childcare. Even in my state, I managed that. My mum came up to look after the children and I went up on the sunday morning coach to London. A quick lunch at Starbucks and off on the next coach to Norfolk. It was all so simple and straightforward and even a reasonably comfortable seat. I arrived sunday evening and as my friend was working till 11pm, I had tea with her husband and younger son. The next day was hot and sunny so we went off to Holkham Beach. It was a bit of a trek to get to the beach but if I went slowly with my stick I could actually manage it. We must have looked a strange sight - 2 women of a certain age just plonked down on chairs in the middle of the beach just chatting. It was wonderfully relaxing and we could have been anywhere as the sea was so turquoise. Eventually, hunger got the better of us and we went off to Norfolk Lavendar for lunch. the only problem being that they had finished serving lunch an hour ago and all that was left was 2 soggy sausage rolls. It filled the gap!! We then went to a houseware/hardware shop which was really unusual and had lovely wicker/Lloyd loom furniture and really gorgeous bedding. I then fell asleep in the car on the way home - not for any other reason than I was tired and relaxed.My poor friend was not relaxed - a warning light had come on the dashboard and the car kept faltering. Anyway, we made it back home.
That evening was very relaxing - really girly stuff - film, wine and snuggled under a duvet.
The next day we went to Walsingham - a very spiritual and relaxing place. The church was very moving and we both lit candles.
The next day and it was time to go home. We arrived at the coach stop in the village about 1020 for the 1040 coach. There were no seats or shelters on that side of the road and it was hard for me to stand for this length of time. By 1105, I'd had enough and phoned the coach company. Apparently, the coach had broken down about 10 miles away and they were waiting for a replacement and it would be about an hour. I asked what I could do as I couldn't remain standing. They asked me if my friend could take me to Fakenham which she did. We arrived there at 1140 to find that the replacement coach had not arrived or even started its journey from Great Yarmouth. We did what any woman would do and went to the coffee shop across the road with the amazing name of the Dancing Goat. Very disappointingly, we didn't see any goats dancing but the coffee was lovely. Eventually, the coach appeared and by the time the driver had transferred our luggage over, the old coach had been repaired. It was only a split radiator hose so why a local engineer could not have come out initially was beyond comprehension. We set off 2 hours late!! The coach driver's original itinery was to drive to Stratford in East London and for him to meet the returning Cromer coach. Due to the delay, this was rearranged butt he arrangements kept altering. The driver, Adam, was fantastic and everytime he spoke to his control he left the phone on speakerphone so we all could hear what was being said. The story kept changing but eventually it was decided by someone that our coach would drive to the services near Stanstead and the coach from London to Cromer would meet us there and the drivers would swap over. We arrived at Stanstead at 1510 and the driver told us the coach would be to us about 4pm. At least, this unscheduled stop meant we could get something else to eat and drink. We were also told that the operations room would ensure that all the customers with onward journies would be booked onto the next available coach once we'd arrived at Victoria. Well, we sat at the Services and there was no sign of the coach. Eventually, a passenger got hold of the operations room and was told that the Cromer bound coach had only just left and that we would have to swap coaches!! Our driver had not been told this and had to phone up himself to get this information. Eventually, the coach arrived and we left at 1710. This coach and its driver was not employed by National Express and he used his mobile as we were driving down the motorway. I mean he was not using it handsfree but just using it. Rather frightening really!! We eventually got back to London at 1830 which was about the time I should have arrived at southampton. By this time, I was in a lot of pain and was finding it difficult to move myself and my luggage. Despite me buying a disabled concessionary ticket, I got no help until I was in tears and a fellow passenger got me help. The Southampton coach driver was very rude and unhelpful and pointed out I'd missed my coach by 4 hours - I knew that, thnak you. National Express had never booked our forward journey even though they said they would. I arrived home at 2130 and was rather tired and exhausted.
NB - before I went off I went down to motobility at the shopping centre and hired a motorised scooter thing. It was brilliant - I could get to parts of town I've not been able to get to for months. The only problem is they do not have brakes - you have to anticipate when you want to stop and let go of the handle. I did crash into a lift at one point which was a bit scary. Everybody is really helpful apart from the actual shoppers in ASDA who appear to have no idea at all of anything that is happening around them apart from their own shopping needs.

Them bones - I forgot to say in my last post that my mum had found an old walking stick and it made such a difference to how far I could walk. I've found that I'm getting a lot of pins and needles now in my leg and my lower back is hurting and across my shoulders is sore. I'm getting very worried that I won't start the radiotherapy soon enough for it to be effective. Anyway, friday was bone scan day. The twins went off to Nan's and went out bowling and AJ went to school and the after school club. I had trouble getting back from the school so I don't know how I'm going to get the children to school from now on.
The nuclear medicine department was quite quiet at 1230 and the nurse made me lots to drink and even made me a cup of tea and found me a foot stool. By the time the radioactivity had worked itself round me, there were quite a few people around. I got on the machine table without any help and this time asked for a blanket as the aircondtioning makes it so cold. So far so good. I didn't even panic when the machine was close to my head and I didn't have an itch I couldn't scratch. Then I saw the results on the screen. I could see a big white patch in my left hip and either in my last few vertebrae or my pelvis and in my 'old' vertebra in my chest. There were also some funny patches elsewhere but I think that is where my body was closest to the machine. At the end of the test, I got lits of attention. They helped me up very gently and found me my shoes and even carried my bag. This was not reassuring at all - made me feel as if they thought I was going to fall apart any second. Hardly subtle is it!!
Since then - my blue badge has arrived. Hurray - perhaps I can go shopping now. I used it at the library today so I could park nearby and I used it at the Co-Op. The children are very impressed. Laura thinks I should get a mobility scooter and I agree, as the shops are so spread out, I can't manage the lower and top end at the same time or even the shopping centre itself without lots of sit downs. It would be useful for the school run but a nuisance to everyone else as well though.
Now have to wait until the 14th to get the reults of the scans.

Waiting, queuing, cockstops and a dolphin - I'd been phoned on wednesday to go for a CT appointment for the friday. I arrived for the 9.30 appointment and starting drinking the aniseed tasting dye stuff and sat and waited. It then occurred to me that no-one else had been called in and by 1020 I was told the machine had stopped working and there were still 3 people ahead of me. I wanted to leave as I was going to Folkestone and it was the Bank Holiday weekend. Since the consultant had told me that they would not be doing anyhting until I next went back on 14th september, I asked if the appointment could be rescheduled and told it could be. I had just reached the carpark machine when I got a telephone call saying if I came back they could do it on a diffferent machine so I went back. I sat and waited and the first person went in and then I was told if I went down to neuro, they could do it now. I went down there and eventually it was done even if I was there until 1215. I then went back to collect the children and pak the car. This I duly did and switched the engine on and nothing - the battery had gone flat!! Luckily, our neighbour is a car mechanic and he had a powerpack and off we went at 2pm. I drove a different way back along the A27, A24, and M23 onto the M25 . This was where the problem started. We hit a huge queue just after the M23 and M25 joined and tootled along and stopped frequently until we got to Clacketts service station where I gave in and up and the children had what they call a'Mr Wimpy' and I had a coffee. The queue was no better and the M26 just crawled along. the traffic updates were no help at all and informed me I was in a queue. Yes, I knew that thanks!! Eventually, I got back to Folkstone at 7pm - an epic 5 hour journey covering 140 miles. The first thing mum said was 'don't flush the toilet' as I've got no water pressure' Great - just what you want to know with 3 children especially with one who has had some sennacot!! She explained that a man from the 'care and repair' scheme came the day before to replace the washers on the taps but since then she had been unable to use the shower or the washing machine due to low pressure and the cockstop was dripping. She had asked the 'care and reapir' man to come back but he hadn't and nor did the neighbour who said he'd pop in. We could fill up a jug from the kitchen every 10 minutes or so and this is what we had to use for any water needs. At 10pm, mum found an insurance document that seemed to cover this sort of thing but by this stage we could not face having someone in the house and so she phoned the next morning. Would you believe, the first thing they did was try to sell her an upgraded policy and after explaining several times she had no water and a drippy cockstop, they called the plumber. I went out with the children to meet my sister and by the time we'd returned a new cockstop had been fitted and there was running water. Good job - it had rained a lot of the day and you could tell the children had been on a farm and playing outside and were in desparate need of a bath.
We had a lovely time in Folkestone. We went on the beach and the children swam in the sea. I collected lots of shells for no purpose whatsoever but that I wanted to. We even saw a dolphin in the sea. I could see lots of notices about dolphins and lots of people standing around and thought maybe it was still there but didn't think we could be that lucky. Suddenly, I saw it and pointed it out to mum and Woody. AJ and Laura had run off. Woody managed to shout loud enough for AJ to stop and he saw it but wasn't impressed. By the time, we'd attracted Laura's attention, the dolphin had disappeared. Eventually, it came back and kept swimming near 2 men in the water. We went onto the seawall for a closer look and Laura spent the next 20 minutes or so laying on the wall and pontificating about dolphins. Typically, we had no camera or my mobile to catch the moment but we were all so pleased.
On wednesday, we had to return home but decided to spend the day at Drusilla's Park. The journey was a nightmare and it was a long queue to get in but it was worth it. We loved the animals and the children enjoyed all the adventure play equipment and I enjoyed sitting and drinking tea. As it was so expensive, we left at the final moment to make it worthwhile and so got stuck in another queue on the way home.
I'm so pleased we managed to get back to the sea this summer and to see a dolphin was fantastic. Poor hubby had to work this time and so missed out on the experience.