Saturday ended up being different to expected as we ended up temporarily childless!!!
AJ was on the Isle of Wight and Laura had been invited the night before to a sleepover on saturday night. Then suddenly Woody was invited to a sleepover and in 10 minutes he was packed and off!!!
Woody took part in the Great South Junior Run in Portsmouth. He really enjoyed it but it was a bit further than he'd run before so found it harder and his time was quite long. He met up with his friend before they started to run but his friend could run faster so left him behind!!
Laura and I went shopping for 3 hours!! We did some shopping for Halloween as they love trick and treating and then we did some girly shopping. Laura is so tall now, we just buy adult clothing. She looked stunning in her new outfit with her long legs in leggings and skirt and top and so grown up. I bought her some boots which reminded me of my black suede boots with tassles down the back that I had in the 1980s.
That meant by 5pm, the house was devoid of children so we went off for a wonderful meal in a pub. We both over ate and I felt quite ill when I got home that I fell asleep on the settee for about an hour from 830pm. I thought I would just go to sleep but once in bed I seemed to go into my trancelike state. I seemed to be awake for a few minutes and then asleep and was jsut so full and uncomfortable. I used my hot wheat bag and my heated pillow to help with the pains but I just didn't settle to sleep until about 5am. The problem was I was trying to do a tescos order and I'd booked a slot but as kept falling asleep and waking up again , it took me more than 2 hours to complete my order and so it wouldn't let me check out to complete the order. Eventually, I got through the system and hopefully will have some food delivered on friday.
Sunday morning, we got a text from AJ's friend mum to say they were coming home today rather than monday as AJ wanted to go home and her son wasn't that happy with the caravan site either. In some ways, it was good as it gave me more time to pack etc and we could leave earlier on monday but not so good as gave hubby less time to clear boys bedroom so that Woody has somewhere to do his homework in peace and quiet.
By noon all 3 children were home and so it was back to a hectic life again.
For some reason this cycle, I've had a very red face from friday to sunday andthe redness extended all over my body. I don't know if it was the combination of the blood and the chemo or just one of those things. It has been pretty annoying anyway.
We went out to Pizza Hut to celebrate the beginning of half term. It turned out to be a disaster. Why do we always attract such bad service and food at chains? The wait to order wasn't bad but then hubby and I got our starters and then our main pizza arrived apart from hubby's. They told us kitchen had got it muddled and a medium pizza was on its way rather than an individual. 20 minutes later, when the children had finished their pizzas and hubby was still waiting. We should have complained about the starters - the nachos was burnt and cold and the garlic bread was cold as well but we thought we'd give it a chance and din't bother. Eventually, his pizza had arrived by which time AJ was bored. We then had a long wait to order puddings and an even longer wait for the bowls to arrive for the icecream factory. At this point, we did complain and so got all our starters and our drinks free but has put me off going back there again. It feels like you definately get what you pay for as the meal and service at the pub was superb.
I then spent sunday night packing and slept well for once.
Monday - we were aiming for the 11am train and after a very slow taxi drive to the station we just about got there on time only to find that the train was only 5 coaches long and people were standing!!! We took one look at the train as it came in and abandoned all ideas of getting on it so left the platform and bought cakes and drinks and waited for the 1130am train.
This was a much better decision as the 1130am train was 10 coaches long and about a quarter full and only stopped at one extra station so it was far more pleasant. We then swapped onto another train in London and am now at Heather's house in South London having a lovely time and being looked after superbly.
We spent this afternoon with me reminiscing about my childhood. We passed the old Town Hall in Catford where when I was about 4 I got into the lift and my Nan and mum didn't make it before the doors shut and I was left on my own!!! Ever since I've been scared of lifts and the only reason we had gone there was to join the Tufty Club so that I could learn to cross the road properly!!!
We then went onto the Hornimans Museum in Forset Hall. It was still free to go in and although a lot of it has changed beyond recognition, the German Clock with the Apostles that come out and bow to Jesus apart from Judas who turns away. We'd been told that it was now very tempermental and that it didn't always work. We were in luck. It chimed at 4pm and at 406pm, the apostles came out and bowed. it was wonderful. I can remember when I was little dashing off the bus and running up the stairs to see the clock chime. I'm sure when I was little, it chimed every hour or maybe it was always 2pm. It bought back lovely memories. The rest of the museum looked like it hadn't changed since the 60s with quite a few stuffed animals but also some wonderful fossils and it looked as if the art and craft session had been good fun. They have now opened a new aquarium at the bottom. That was quite an eyeopener. The way the jellyfish were displayed and swimming around was stunning and there was a huge seahorse and lots of lovely coral and tropical fish and a huge blue lobster. It seemd to be a place that mums took small children too to explore as there were a lot of interactive things to do at certain times and the museum is in the middle of some wonderful gardens. We only had just over an hour there so hope to go back this week to see the rest of it. AJ loved the Mummy display plus there was a large African and Indian display which we either just rushed through or didn't see. On the way back through the park to where we'd parked the car, Laura was amazed by the squirrels raiding the bins and eating apple cores. I don't think she'd seen squirrels that tame before.
We came home in the rush hour and I think the traffic flowed better in Greater London than it does where we live!!!
Just had a wonderful fajita meal which was wonderful and now supping red wine after finishing a McFlurry.
I feel so well at present and apparently look so well that it is hard to believe that I'm reaching the end of my life. My wig is looking good and looks like real hair and my skin is OK and I've got my eyelashes and eyebrows so it is only when I'm struggling up hills that you notice I'm short of breath and that sometimes I limp that it might occur to you I'm slightly ill. The insides of me would tell a different story if you could peer inside and my back is really painful today as I've been carrying a few things. (I hardly carried anything as hubby and the children carried all the heavy stuff). Life seems so unfair.

chemo and blood transfusions
Well after wondering what cock ups they could make yesterday with having blood transfusions on the ward and trying to see the onc for my chemo, I'm amazed to report it all went more or less to plan!!
I had to get up at the unearthly hour of 630am to be ready for my lift at 730am so arrived at the hospital at 8am and had some extra breakfast. I'd bought food with me for the rest of the day, completely forgetting that as I was on the ward they would come round with tea/coffee and sandwiches!! I got to the ward just before 830am and the transfusion started at 930am and so I'd had my 2 units of blood by 145pm. It was lovely having a bed so I could keep my feet up and rest my back. I think my body got a bit overloaded by the volume though as my ankles did swell - wonder if they still give diuretics if having blood for anaemia and not because you've lost a lot of blood? The other advantage was I could sleep when I wanted to so slept on and off.
The oncologist came to see me about 1230pm and must have been the shortest consultation ever consisting of about 4 sentences asking me if I was OK and me asking if I was due zometa and that I wanted to miss next week off as it was half term and what were my bloods were like. He said he hadn't looked at my bloods but would look at the results and order the chemo and zometa and it was fine to miss out next week and that was that!!! I was a bit surprised he hadn't looked at my bloods as he must remember by now I always ask!!
The only slight hiccup was that I'd gone to sleep due to the IV piriton and no-one had checked the speed the taxol was running at so again it was very slow going through. They can't put the taxol through the machine as it has to go through a filter first and the machine can't cope with that!!! It finished about 40 mins late and I ran the last bit through a bit quick so felt sick when I went home but an odantroson saw to that. So it will be good to have a week off as will be in London monday to friday for half term.
Aj is so excited about Halloween that we have to be back for the annual trick and treat round that the children in our road do. He had set his heart on a grim reaper outfit but it is only in adult sizes so we bought him a similar outfit plus some stocking presents.
AJ has gone off with his good friend to the Isle of Wight today and is back on monday. He has been so excited about going so am pleased he has the opportunity to go and hope allworks out well. He is going on a Sun holiday so had to pack sheets etc so it looks as if he is away for a week and not 3 nights. He is going back to the site we stayed with my sister in April. I think it will be warmer than when we were there as it was minus 4 one night!!! It seems strangely quiet without him. Then Laura is doing a sleep over saturday afternoon to sunday late morning. Hubby is taking Woody to do the junior version of the Great South Run tomorrow lunchtime. He is being sponsored for the Hospice so if anybody fancies sponsoring him then he would be grateful - sorry - I feel I'm always asking for money. The run is actually for leukaemia but you had the option of choosing your own charity and that is what he chose. He went out for a training run yesterday and did really well. Hubby cycled beside him. Heis very interested in doing athletics and I keep forgetting to find out about it and when you try to google it nothing comes up. In a city this size it seems unbelievable not to have a club or do they just not advertise themselves?
AJ comes back about 1pm on monday and then am aiming for 3pm train to London. We're booked on the London Eye on Tuesday as we had to book a day and time as I've got a disabled ticket. We are also meeting my sister and her family on thursday so think I will spend the day in Heather's house on wednesday as will get too tired I think to do 3 days in London on the trot and it will be good to spend some time with Heather and hopefully will have a voice this time unlike last time when I had laryngitis which turned into a chest infection. It was so frustrating only being able to talk in a whisper!!
Time sped by today at frightening speed. We did a little shopping this morning and then I went out for lunch and it was wonderful to be able to choose anything off the menu and then went in to see Woody's teacher, home then dinner and it's now 8pm. Life is just rushing by.

Well, not only did I not go to bed late on thursday, I woke up at 530am so had 3 hours sleep. These steroids are a nightmare!!

Seemed to take me ages to pack so instead of leaving at 10am as planned, we didn't leave till 1130am and then got caught up in roadworks so only just about made it on time for lunch at the MacMillan Trust Albany Lodge Guest House. This MacMillan Trust is a totally different charity to the MacMillan Cancer Support Charity that everybody is familiar with. It has been running for 23 years and is the only Guest House it runs. The charity does pay for some people who otherwise may not get a holiday or else it is £55 per person per night for full board and if there during the week, it also offers 3 morning excursions. It seemed quite good value to me. It is an old fashioned type of guest house and the food is very typical old fashioned type of English food but it is cooked really well and was ideal for us. The majority of guests were on the retired side but there was one family of 4 generations and they were good at storing frozen baby food and reheating it. There were quite a few single women there in their 50s who also had breast cancer plus some older single women and just 2 single men. It seemed sad to me that there were so many single people there and I wasn't sure whether it was the cost or if they really had no-one to go away with. That seemed very sad if that is the case and makes me so grateful for all the friends and family I've got to support me.

At risk of sounding like a marketing campaign but knowing that so many different people with cancer do read this blog and might feel they want a break near Bournemouth, I feel I should tell you a bit more about the place. For the rest of you, just skip the next paragraph.

There is a nurse on duty 24 hours a day and although there is tea/coffee etc in your bedroom, they are happy to make you a drink at anytime and offer alcohol at most times. There are 3 different rooms to sit in downstairs with only 1 having a telly in but there are tvs in the room but they desparately need replacing and that is their plan. The beds were really comfortable and there are lifts up to the bedrooms and down to the restaurant. They will cater for special diets and can loan out mobility scooters, wheelchairs and other mobility aids. They do half day trips to local places 3 times a week. The food was good and plentiful and the waiting staff really helpful. It was the usual cereal and cooked breakfast and toast first thing. Then a 3 course meal at lunch and dinner. I had trout one day and a roast dinner another. The sweets were things like strawberry gateaus, creme caramels, ice cream or cheese and biscuits so basic English food but cooked to a high standard. If you wanted to miss out lunch, they offered a packed lunch which was huge. They also own a beach hut which you can use. All in all, it was a lovely relaxing place and so many of the guests had been there frequently.

It seemed a shame we didn't know about this earlier as hubby and I could have gone away for a few days there earlier in my illness. Some of the people staying there had come from as far away as Bedfordshire and Surrey whilst there were others like us who lived much closer. If you do have cancer and just want a break, it is a good place to go.

Anyway, back to what we did!!!

After lunch, we went into Boscombe and had hoped to take the landtrain into Bournemouth but it was only operating at weekends so we drove into Bournemouth and had a walk around the gardens and did some shopping. There was a different type of craft fair there so managed to buy some different things for Christmas presents.

Saturday was a lovely warm day so we went to Compton Acres Garden. It was really beautiful as the trees were turning autumnal and there were stunning views over to Brownsea Island and Hengistbury Head. The gardens themsleves were in different styles such as a Japanese garden and an Italian Garden plus there were little sculptures in places that gave it an individuality. We managed to get across the stepping stones without falling in and there were plenty of seats for me and a coffee shop halfway round. There was also a lovely and unusual gift shop so again bought a few bits and pieces. We then went on to Wimbourne for more shopping. Think you can gather we did rather a lot of shopping!!!

Sunday - my ankles were less swollen than the night before but were still up and the weather was not good. Very windy and occasional showers. We walked as far as the papershop and then spent the rest of the day sitting in the lounge so I could do some cross stitch and other memory stuff and mum was busy knitting hats for babies in Africa for a project that Paul O'Grady is involved in.

Monday - left the guest house and as the weather was even worse than sunday we had to abandon plans to go to Exbury Gardens and so just carried on the M27 till we got to Portsmouth and did more shopping at Gunwharf Quays before coming home.

It was lovely just to spend time with mum on her own without being interupted by the family or the phone. It was not as if we had lots of 'deep and meaningful conversations' but just lovely to sit and chat or go out to places which are 'normal' - like shopping centres, craft fairs or visiting gardens rather than sit in chemo clinic and not be able to talk without being overheard and the stress of worrying what the consultant will say or howlong pharmacy will take to make the drugs up. Now that I'm eating normally, it was lovely to have the food all provided and not to have to think about what to cook, clear away and wash up etc. We did really well on the map reading front and didn't get lost which was an added bonus and of course, we did loads of shopping!!

Again, it seemed a shame not to have done this earlier. We could have gone away somewhere else but it was definately better for me in my state of health to stay in a specifically designed guest house for people with cancer as it made staying in during the day so much easier as the lounges were big with chairs the right height and with different types of backs. Footstools were available which makes all the difference to how comfortable I am and helps with my swollen ankles. It was good to be away and have that break away from my family as well - as much as I love them - sometimes I just want to be alone or with quiet adults. It was worth doing and I'm glad I was well enough to do it.

I didn't forget about my family and did worry about how they getting on and I did miss them. I had phoned home every night and it all seemed calm apart from Laura had lost her mobile phone 'somewhere in the house' on saturday and it couldn't be found and I wasn't sure having bought a top up voucher for the first time in my life, how long it stayed valid for and I didn't want to waste my money and I also wasn't sure what names and telephone numbers were stored on it. The twins had to pack sunday night as they were going away on a school trip from monday morning to wednesday lunchtime and I had a chat with them about what they were taking and just had to hope they had got all on their list. I didn't need to have worried as they are used to packing for scout camps and can follow the list provided by the school but I just couldn't help it.

Tuesday - mum came round to tidy up after the breakfast and getting off to school rush and just help me before I went to the Hospice. She did lots of housework as she didn't leave for home till nearly 2pm and she had arrived at my house at 9am!!! It was busy at the Hospice this week. I miss not having my hair done - fiddling with a wig isn't the same!!! I did have aromotherapy and she was happy to gently do this on my back. So many people are not willing due to my secondaries in my spine and shoulder blades but I just told her which bits to avoid and it felt divine. I also had reiki but due to a shortage or mismanagement of room allocations, I ended up sitting on a chair without arms or proper back support. It was impossible to fully engage and relax completely when sitting upright so didn't get my usual feeling of being somewhere else and the full benefit of a reili session. The reiki practitioner also felt she wasn't able to offer a complete session either so that is something that needs looking into. You can not get the full benefit of reiki or aromotherapy sitting in a room full of chattering people. You need to have a quiet place where you won't be interupted. The rooms just need to be allocated properly which was very frustrating this week. I also saw the physio as my lymphoedema sleeve has lost its elasticity and need a new one. The afternoon was spent making cards to sell for the hospice.

I do enjoy going there. It is my 'treat' day as I like to have reiki and aromotherapy. The manicurist is off sick which is a shame as that is always something I enjoy and now being partially bald, I don't go to the hairdresser either. I need a wig that grows so that she can restyle it from time to time!!! I missed the chiropodist last week and do need to see her as one of my big toes is trying to ingrow again after the surgery in January. I also enjoy talking to the other 'patients' who attend. They are all so interesting and have a good sense of humour. The age difference doesn't matter now but it was difficult for the first few weeks that i went. I think the next youngest must be now in their 60s so there is at least 14 years between me and them. I suppose it helps having been a nurse as I'm used to talking to people of different ages but I think most people say the same, you get used to being a group and we often don't talk about our cancer at all. One lady bought in her Land Army Medal which had been sent to her earlier this year. That was interesting but as someone else pointed out,it is sad that these women were only recognised this year for all their hard work in the Second World War so there is Gordon Brown's signature at the bottom instead of Winston Churchill's.

In the evening, we had AJ's parent's evening and had a shock that he was on a an IEP (individual Educational Plan) and had been for the last year and no-one had told us. We had definately not signed anything about this. We are really worried about AJ. His concentration is so poor and he is so fidgetly. Everyone keeps saying it is his reaction to my illness or the death of his cousin but he was like this before any of that happened and we can not get any help for him as he has not been assessed. We did manage to talk to the deputy special educational needs co-ordinator so she is going to try to get him seen by the educational psychologist and we also found out that the counsellor that he saw last year will be doing some limited work at his school so he will see her again and also get some help with his lack of confidence. Like Woody, his handwriting is a problem. Both of them have it all in their heads but just can't get it down on paper. AJ is in the middle groups for numeracy and literacy but if he would only pay attention and settle to do his work he is working above that level. His reading is excellent and his vocabulary is huge and he has a brilliant imagination so has great story ideas but just can't follow it through but is getting limited help. He is good at home at numeracy but just doesn't stay on task at school so is in a group below his ability. This really worries me and makes me feel guilty that it could be my illness that is causing him to be so unsettled but there again,we both feel he was like this before i was ill and we feel that sometimes the school just uses my illness as an excuse for his behaviour and as he is working at average, they are not so concerned. I really am worried about the children's future education especially the boys more than Laura. I feel my illness and my eventual death will stop them reaching their full potential and even though I know I shouldn't feel guilty, it leaves me feeling guilty and very sad that I will not be there to support them through the education system as well as the rest of their lives. I feel at times I'm more of a problem to everybody by being still alive than if I was dead. I know that is not true but sometimes I feel such a liability and my illness and current health stops us acting as a normal family - whatever that is!! Next week, we're staying in London and it's knowing that I can't go out all day with them and will have to come home early or sit in cafes will they are off doing something else which makes me feel bad. They all worry about me and if I do leave early then they'll worry about how I will get home and it spoils us being a complete family. When I am with them they have to walk more slowly and they will worry that I might fall so sometimes I think it will be easier for me to stay in.
Gone right off at a tangent now but I think today just made me feel uncertain of my role in life and scared for the future.
Today - wednesday - the district nurse came to take blood to make sure I'm alright for chemo tomorrow and to crossmatch for the 2 units of blood I'm supposed to be having. I'm worried that something will be wrong in my blood or that the sample will have gone missing. The oncologist wants the transfusion to start at 830am - that will not happen I can guarantee that - it will be later and I've got my oncology appointment at 10am and scared I'll get missed again. Then the cleaner came in and got things done. I booked the train tickets for going to London and for the London Eye. Being disabled means we have to have booked timed tickets so now worrying that we won't get there on time or the weather on tuesday will be so bad we won't get a view!!!
Had to pick up the twins from their school trip at 1pm and at that time had terrible stomach cramps and was really breathless and it felt too much to get them.
Hubby and I had a row about tidying up and I just don't remember what we agreed about Woody's desk and laptop so argued about that. We have kissed and made up now though.
I went out with a friend for a coffee and for her to buy a few bits she needed and ended up in tears as I feel so useless and causing a problem for people and also being so scared of the future for my family and how they will cope.
Then this evening everyone was tired and grumpy and everybody seemd to be moaning and I just wanted to run away. However, after tea it all calmed down and I spent time with each child and hubby and felt much calmer again. It also helped that the neighbour came round and got us back onto wifi and the printer working after it suddenly stopped working on monday evening. For some reason, I am beginning to panic if we can't access the internet and I have urgent paperwork I need to print and to wait from monday evening to wednesday evening just seemed too long so now it's all restored, my peacefulness has returned as well.
Oh well it is now 1am so will only get about 5 hrs sleep but was too twitchy to settle earlier and hopefully, I will have a bed so can sleep during the day tomorrow and by the time I get the steroids I will be buzzing again!!!
Another cycle of ups and downs of steroids and chemo - but should then have 2 weeks between chemo so should then recover.

Woody had a fantastic time going to Wembley. It was so lovely to get my giggly, funny son back instead of this boy who wants to take charge and is worrying about me all the time and telling me to rest etc. He's only 11 and I want him to have fun so it was a relief to see he could still laugh and be silly and have fun.
Sunday morning, I had a lie in whilst the family I was staying with and Woody all went out to ply/watch football and then I had a bath - luxury.
After lunch, Heather took us back home and hopefully we will go back at half term to stay as a family and visit some London sites which we are all looking forward to. It is great to be staying in a house as if I feel too tired I can stay in and be comfortableand the others go out without me so thank you Heather for having us last weekend and taking Woody to Wembly and for the offer at half term. I feel my health is a bit precarious at the moment which is why I said 'hopefully' but I'll get onto that bit later.
Monday was Pete's birthday and also it was a year since we renewed our wedding vows. What a rollercoaster of a year.
I gave Pete a lift into work so he didn't have to cycle back after our meal out. I also needed to get a couple of things from Tesco Direct and Staples before rushing back to see the doctor about AJ.
I then managed a quick conversation with my friend, Mary from work who comes a lot of mondays to help me with housework etc and is always good with the guinea pigs. Today, she did the ironing for me which was a relief as it was building up but I felt guilty just leaving her in the house whilst I was at this meeting. I am so grateful to all my friends who help me out and always feel guilty that I can't do anything back to help them.
After this, I went to a user meeting at the Hospice and rather put my foot in it and probably upset someone. I understood that the meeting was for people who used the Hospice either as an inpatient/outpatient or used daycare. Somehow in our group we ended up with 2 couples who had never been to the Hospice and didn't know what it offered and one had been discharged from the hospice nurses books. We had very limited time and a lot of questions to answer about the hospice and for these couples all they wanted to do was to complain about the poor communication at the hospital - which is completely understandable and I agree with but it was not on the agenda of the day. I pointed out to the facilitator that the objective of the day was to discuss the hospice but she dismissed me saying that they then were being excluded from the group. They were taking over our limited discuasion time and I wanted it back on track and it was not our fault they had been invited to an event which was not appropriate to them. I was also angered by one of the couples as they have private treatment for her cancer and could not understand why her private notes were not at the NHS hospital and the NHS staff could not access the private records. This should have been explained to them when her treatment first started.
I've never been the most patient person in the world and I always have had very little tolerance in small groups when someone takes over and with facilitators who do not have the skills to keep the group on task. Probably have a big black mark by my name now. I did apolgise to the couples and explained that the invitation did say the meeting was to discuss the hospice and not the hospital. They were OK to my face but I expect they were cross with me.
After that I came home and picked up the children en route so we wrapped up Pete's pressies and went off to meet him for dinner. We had decided to open pressies etc at the restaraunt as it is so rushed in the morning.
After all this time of wanting a fajita, it was a real disappointment as it was very watery and tasteless!! Well, I'll just have to find somewhere else to have my fajita now!!!
When we were there, the twins noticed one of the tables had birthday balloons and asked about them so when pudding came, the waiter who reminded me of xfactors, Chiqo, (probably got the wrong programme as don't watch these shows!!) lit a big sparkler on Pete's birthday and we all sang happy birthday to him so that was nice. Pete had said he didn't want everybody to sing happy birthday to him but the waiter just did it once he knew - I hadn't asked.
I still didn't have much voice and was beginning to cough up disgusting stuff so thought I'd wait until morning to see the doctor.
tuesday - I couldn't get through to the doctor in the morning so thought I'd wait for the afternoon emergency surgery. My chest was really wheezy and we had to play hunt the nebuliser which is not a good idea especially when your husband decides now is a good time to have a shower!!!! AJ found it and the nebuliser stopped my wheeze and I got a lot of gunk up and felt better. I went to the hospice and had reiki and one of my wigs recut so it looks fine now. Still being complimented by these men over 80!!! I find our group so supportive despite this huge age difference between me and the next youngest who is 65 and the oldest at 90!!! Cancer does bring you together even though as a group we rarely discuss our problems openly with each other as we all see it as a 'treat' day but the nurses and volunteers are there if you want a private chat. We do all care for each other and it gives me a sense of belonging somewhere special and I feel priviledged to be able to go to daycare as there is now a long waiting list. After lunch I fell asleep and felt quite fluey so I got an appointment with the doctor who gave me antibiotics.
I get a lot out of it as I enjoy the reiki, aromotherapy, chiropody, manicure and hairdresser - well now wig cutter - and chatting with the others and doing word games as a group and it means I do eat well there. I still find it difficult to motivate myself to eat properly at lunchtime. on my own. I enjoy the craft activities in the afternoon and always come back feeling happier and more relaxed. I must have been going for about 10 months now - time goes so quickly.
If you had told me 5 years ago that I would enjoy daycare at a hospice I would have thought you mad. It's odd how your life can change and being happy somewhere can be so different to where you thought you would be and what makes you happy can change so much.
Wednesday was a bit busy in the morning with the district nurse coming, the domestic housework carer and the shopping carer coming in the morning plus the hospice nurse and then mum coming. I picked Woody up at 4pm as we had to take the PS2 back as it is faulty and he needed new footy boots and trainers so surprised myself by how far I could walk. I do notice that I am a bit wobbly at times and get a bit light headed - wonder if I'm anaemic again. Hope it's that and nothing more sinister.
Thursday - 10am appointment at chemo. Beginning to think I am waiting longer for pharmacy with these 10am appointments than I did when I had appointments at noon. Think next week I will ask for my appointment times to be changed as then I have a lot of the morning at home and still get treated at the same time!!!
Anne had rang me yesterday to see if she could visit me today as she was down from Derbyshire for a funeral. I did my nurse training with her in 1981 and we shared a flat together in 1983 - I hope I've fot the year right!! - so we arranged for her to meet me in the chemo suite. Rather an odd place for a reunion but it does give you a good opportunity for a chat and now the hospital has a new coffee/ciabatta place, you can sit somewhere better for a chat. Mum had taken me for my appointment so she had not seen Anne since 1983. It made time pass really quickly and was lovely to see her and we had a good chat about what was happening to me and how we are coping as a family and it gave her an opportunity to talk to mum as well.
She has offered to write a tribute from my friends at my Thanksgiving service so although I hope this is many months premature, if you want to contribute something to this she says I can give out her email address so she can compose something so please email me and I can pass this on. I know it is difficult and I feel awful asking but I would like others to know more about me from the different stages of my life etc so as I said I really hope this is very premature but the stage I'm now at, I'm very vulnerable and could just get an overwhelming infection or the chemo stop working and being the control freak I am, I think it is better for her to have some ideas now rather than at the last minute. I have had so many different jobs etc in my life and my friends do range from ones I met at secondary school, student nursing days, customs and excise, health visiting and family planning and NCT, First time mums group, neighbours and work colleagues and Pete's friends and the children's friends parents - have I missed anybody out??? I can't think of a secure way to put her email address here so the only option is for you to email/write to me so I can pass this info on as ideally I would rather not know who is contributing.
Anyway, back to today. I met a registrar who I'd never met before. It was not a good move as she had never me before so wlasn't famiiar with my chest and the odd noises it makes. I have so much radiation damage on my left side that it makes interesting noises that all the medical students are made to listen to!!! My right side also makes odd noises but that is cancer related and sounds different to the left!!! Good to know I have my uses then!! She wanted a chest xray first as she was concerned about my noisy chest and I felt happy about that. However, she didn't order the chemo till after I'd had the xray and she had looked at it so it wasn't ordered till about 1145. She also wanted me to have a blood transfusion tomorrow but I wanted to go to Bournemouth first thing for my break with mum. As it turned out, there are no beds till thursday so now need to get to hospital at 830am for this. Need a lift so will ask Lady Hamilton as she works that way - have left a message on your answerphone and will text you to ask properly!!!
Had a lovely lunch and caramel shortbread and wandered back to the chemo waiting room. By this stage my back and hip had had enough. It was 245pm and pharmacy said it would be at least 30 minutes before they made my chemo up. I asked in the treatment room if I could use one of their recliner chairs and they did. Unfortunately, i had not topped up my oromorph bottle so had to get the nurses to ask the reg to write me up for more so they were a bit cross with me. I usually don't need it and usually I have somewith me but 6 hours with an unsupported back and at the wrong angle for my hip and my feet were swelling as there is nowhere to put your feet up apart froma coffee table so what else am I supposed to do.
They didn't start the infusions till 430pm so was moved into the daycare area so I got a bed and went to sleep due to the combination of exhaustion from pain, piriton and oromorph. As my chemo started so late I got my steroids late hence why I'm still awake at 1am!!! We got home at 7pm - totally unacceptable for a 10am appointment.
Off to Bournemouth tomorrow so won't be online till monday afternoon/evening.

Namimg You All
I am trying to reorganise my blog so that I can give you names rather than 'this friend' or 'that friend' so decided I would give you all names. It will be at random so you may be called 'Anne' in real life but for this blog I'll call you 'Joan'.
So many people say I should try to get this blog printed and after I'm not here, no-one will know who's who and for family and friends if you ever read this later on, then you will know who you are.
If people have done something that that should be kept anonymously then I will do that eg if somebody had paid for us to go to Florida and you are identifiable from other things in the blog then I will put you down as a friend or anon again.
If you are happy for me to use your real first name or if you are happy me to use your user name from forums then let me know but I do often know many people with the same name so I may have to do some creative thinking.
Sorry - if I give you a name you detest or if you read your real name and think 'I didn't do that', you now know why. Hopefully, you and I will remember this new system!!!
Kate

Reminiscing
I'm in a house alone in SE London at present having a very peaceful afternoon.
A friend I made via one of the forums has got Woody a ticket to see England play at Wembley tonight so she and her hubby and their sons plus another friend have all gone up there, leaving me alone in their wonderful house to get on with my memory books. Well you can see, I'm not doing that!!!
We had to collect her friend and on the way passed where I grew up till I was 7. I was amazed by what I could remember and what things have changed and what things haven't. I could still remember the way from my house to the school and station and different landmarks and shops!! I left there in 1969!!! Firstly, we found my infant school. I couldn't believe the mobile classroom I went to in 1969 is still there!!! It looks so ramshackled that I'm amazed it is still used as a classroom. I remember that was the last classroom I was in before we moved to Kent and we had a teacher who had had polio and she used to sell us biscuits at breaktime to raise funds for children with polio in Africa.
I could remember the fear of looking from the infants playground into the 'big' junior school and today that 'school fear' came flooding back!!! I could also see the part that used to be the preschool and remembered running round the corner of the playground from this mobile hut each playtime to see my sister in the preschool. We used to touch each other's fingers through the chickenwire fence!!! How sweet!!!
We then went round the corner to my old house. It looked the same but the front garden looked so much smaller than I remembered it and I couldn't help wondering if it was still the same brickwall there that my dad built as it looked quite old.
We then drove up from my old house passing the postbox but the telephone box has gone now and into the road where we got the bus and then drrove upto the station. The old blue policebox has gone now and the railway station doesn't look as if it has been painted since 1969 but round the corner the hardware shop was still there!!!
We then went up to Beckenham and even though the area has been changed into Homebase, I could instantly recognise from the shape of the lake that it was Peter Pan's Pool which used to have a helter skelter and other fun fair type things in plus dad used to take me out in a rowing boat on this lake!! I can remember it used to have some sort of charcoal/woody /dirty area at the back where Homebase is.
It was quite mindblowing seeing all these things again and was amazed at what memories it brought back!!
Now back to actually doing the memory books instead of harping on about it here.

Email Problems
For some reason, virgin media won't let us access our emails. It seems to have crashed so if you only use that address, that is why you are not getting any replies. Please use my hotmail address or phone/text if need a response to something!!!
Thank you

Camping in The Rain/ Stomach pains
It was rather a hectic journey home from the hospital. Pete was bringing me home and my mum was picking the children up as the twins had forgotten their rain macs at school and they needed them for their scout camp so grandma had driven back to school to get them. Mum and I took Laura to the opticians whilst Pete took Woody and AJ home.
The optician decided that Laura did need glasses for the whiteboard, telly etc. I'm sure more children need glasses now becuase of these computerised white boards - instead of blackboards, the teachers use the computer which is projected onto a white board. the writing seems to glow and the teachers often use colour which can be hard to read. Laura is quite happy with glasses for school work etc. I'm not sure how she'd feel if she wore them all the time.
Laura is working so hard at her homework and seems so conscientious and is producing reels of work. Woody is really struggling with the concept of homework and is not putting anywhere as much effort into it and infact, the teacher phoned us up this week as she feels he is not doing his homework properly. I think a lot of the problem is his handwriting is so bad that everybody including himself can't read it. This week he has typed everything and he is putting more effort into it and said his english teacher was pleased with his imaginative story plan.
Woody is really upset tonight (thurs 9th) as we gave Laura a small present as she is working so hard and he feels it is unfair. It is unfair but then she is putting all this effort into it and he was doing the bare minimal until yesterday. He is going to see England play tomorrow so that to me is a big present but I think he wanted a pressie or more attention from his dad today!!! He feels hubby doesn't believe in him and Woody said to me he 'needs more self belief' and that dad isn't showing any belief in him. Sounds as if the emotional support people are trying to boost his self esteem -be nice if they would phone and tell us what is happening. Must make an appointment to see them next week as Woody has asked me to do this. It is so hard for him at present but then he makes his own bed by playing on the xbox or playstation continually and having to be nagged to do homework etc. Also, we need to make more effort to encourage Woody and praise him more. I suppose that is the problem - when you are capable, sometimes you end up with less praise but you still need it. Woody always appears so capable and calm but he still needs the praise. Have to practice what I preached when I was a health visitor - it's always harder to be on the inside looking out rather than observe and give advice.
This transition from junior to secondary has been so hard for Woody. I don't think it helps that this is the first year, their school has taken on boys and there are only 105 boys in the entire school and the big year 11 girls keep patting the year 7 boys on the head and calling them 'sweet'. He was used to being a well respected big year 6 boy who helped the deputy head and did all the computer work for the school assemblies and having a lot of responsibility put on him which he thrived on. Now, he is a little fish in a big pond and finds it hard - poor thing.
Laura was also upset tonight as her best friend from infant school maybe moving and this is obviously upsetting her but I don't know whether it is definite or maybe they are going as we'd miss them too.
Anyway,(8mg steroids mania causing my brain to fire all sorts of ideas) after the opticians, we then bought fish and chips and the twins had to pack quickly for their weekend camp and the weather forecast is continual rain.
Saturday - rain and more rain - poor twins. My sister and her younger 2 came down and mum was here so it was a lovely family day.
Mum stayed quite a while on sunday as we needed the help with all the washing and clearing up the mud the twins brought back from camp and trying to dry stuff out.
Pete actually cooked his first roast dinner today - not quite on his own but all I did was to sit on the stool and gave directions but didn't actually do anything else. However, I was rather shocked as would any Yorkshire man reading this to discover that he did not have a clue how to make yorkshire puds!!! He is so proud of his yorkshire roots, somehow I thought it was ready bred in all yorkshire men to make yorkshire puds!! Anyway, they were lovely when they were cooked and we found out that AJ likes roast parsnips which he just wouldn't try before - must be the way his dad cooked them made him try them!!!
At least that is another of my worries ticked off my list. For some reason, it was very important to me that Pete could cook a roast dinner and be able to make yorkshire puddings from scratch and pancakes. You'd of thought I would worry about bigger issues but it is so part of our family routine to have roast dinners and pancakes for breakfast on a regular basis and I wanted that to continue. Is that odd or normal thing to worry about?
Monday - why is it all or nothing with me??!! My friend came and cut 2 of my wigs and have discarded any ideas to do with the ozzy osbourn, anne widdecombe, ginger tomcat and esther rantzen ones so will send them to the wig bank. I'm sure for someone they will be perfect but not for me!! One of them is a really good quality wig so it would be a shame for someone not to use it as the hair is more realistic than most and is a lovely chestnut colour. At the same time, one of my friends was ironing and cleaning and I had loads of phone calls to sort out and field. Then my nursing friend arrived so it was a bit hectic.
The others left and my friend and I went into town for lunch. I had a wonderful chicken and avocado wrap for lunch - it still feels as if a miracle has happened as I can swallow so well - it is a miracle even the oncologists are saying that!!! On the 13th, it will be a year since we renewed our wedding vows and I know then I couldn't swallow that well.
We were not very green and then drove down the road to Argos to pick up a few bits we needed and then in the car again to Tesco Direct to buy some more. My friend picked up a beautiful duck egg blind for her bedroom for £3 - it was a little frayed at the edge but it needed to be cut down anyway so it didn't matter. I have no idea what I did but somehow knocked the lid off the steamer - the pyrex lid - it shattered everywhere and now what do I do with a steamer and no lid!!! Thank you my friend for clearing up after me - I did appreciate it.
Tuesday - I didn't sleep well as my poor stomach was doing sort of labour pains/comtractions and it was so painful and odd. My own fault as not taaken the laxatives properly and so paying the price now. I got up at 745am after falling asleep at 5am for the carer to come at 8am and help me shower. She hadn't turned up by 9am so phoned the office to find it wasn't down. I am sure I told them I was home on the friday before - the communjication is terrible at management level. The carers are wonderful and am sure they could organise their work day better and not be criss crossing the town all the time.
I went to the hospice with 2 of the wigs including one of themthat had been cut yesterday. Everyone said how well I looked and there was something 'different' about me. I told them it was the wig and they were all surprised. The 90 yr old man was wonderfully cheery and flirty with me!!! It was fun!!! The other 'patients' may all be over 65 but they are a good laugh and also very supportive. I really enjoy going to the hospice and not just for the complementary therapies, manicure and hairdresser. The volunteers are so dedicated and wonderful as are the paid staff. It really is a special place and as there is a waiting list at present, I feel very lucky to be able to benefit from this service. In the afternoon, we visited the craft shop so I got a bit carried away and bought some christmas craft stuff and then we went to the garden centre for tea and cakes. This is the first time I've been able to do this as before I couldn't go as it would upset me too much to see people eat 'normal' food. I'd never realised how much of an impact on the social side of life, being able to eat 'normally' had.
The other thing that has changed is that now I'm not in continual pain. I know it sounds daft especially as I was a nurse, but I hadn't realised how much pain I was in and how it was impacting on my life, my mood and general enjoyment of life and my energy levels. I don't cry out when someone sits on the settee next to me as it would jar my back or hip and cause pain and I'm not trying to get time to pass quickly so I could go to bed to rest my back and I'm happier and more energetic as I'm not wasting energy on trying to hide my pain from others and pain itself is draining. life is definately sweeter.
Wednesday - Pete was off and I slept in which made me feel better. The district nurse came to take my blood for tomorrow's chemo. We then went to see a couple of printers for my service sheets and the railway station to collect the tickets for London on Saturday and Pete needed things for the car port - don't ask about that please!! The carers came in to do some shopping and cleaning. They are really lovely people so i hope I don't have others as I'm happy and feel I can trust these ones.
Thursday - the hospital transport didn't turn up so a man who was visiting next door offered me a lift as he lived over that side of the city so I took the gamble and went with him. I knew I'd seen him before but my friend was quite rightly worried but it was fine and I texted her to say I was OK.
I waited about an hour and a half again to see the registrar that I'd seen in hospital so at least she knew what was going on. My weight is stable, my liver tests are all normal so that is great as one of them had been high for a long time but it's not now and my iron levels have picked up a bit as have my white blood cells and my lump is about 1-1.5cm now and just the dimple is there so feel really chuffed and so must seize this moment of good news for once!!! Infact, quite a few women said I looked so much better as did the volunteers in the MacMillan Centre so am pleased. Could it be just the makeup though!! This time as before when I had no hair, I tend to wear more makeup. I only do my eyes though - I don't bother with foundation or even lipstick or maybe it is because I am 'better'.
I had a little wander around the hospital and bought a baguette for lunch and spent a lot of time in the MacMillan Centre. I was the only patient - there was 4 volunteers. I don't know why people don't go down there as the nurses always ring when your chemo is ready and you can carry a bleep so you don't miss your turn and it is so much more comfortable there. Proper settees and drinkable tea and coffee and they always offer sweets or biscuits and MacMillan have reissued lots of really good information leaflets as well. It seems underused as a resource centre which is a shame for everyone as patients get stressed and uncomfortable in the chemo waiting room and the volunteers are great and feel frustrated that nobody visits them. I said I was tired and they offered me the use of one of their reclining chairs. Apparently, a man slept there for 2 hours on tuesday. I was very tempted!!
By this time it seemed about right to go back to the waiting room and I had just about sat down when they called my name. After the intravenous piriton, I fell asleep for about 2 hours but had to go to the toilet a couple of times and on one occasion, I fell asleep on the toilet. I woke up when my head touched my knees - very odd sensation and it would have been very embarassing if I had fallen off when I was asleep!!! I know I took several phone calls but not sure if I can remember who phoned so will have to go through my call log to see if it jogs my memory. One was definately to say Laura's glasses are ready to collect so must do that soon. Pete could take her at the weekend - I know nothing about spectacles!!!
Really looking forward to going to London on Saturday and I'm not even going to the match!!!
Got one of the orders through from BreastCancerCare and there is a parcel to collect at the post office tomorrow so hopefully that will be either the rest of the BCC order or the MacMillan order but will contact you when I have the complete order and hope I did it all right!!!

Another week in hospital!!
I went to bed after everyone went home as not surprisingly, I was very tired but I had also developed a lot of liver pain and general back/hip pain so took oromorph. dihydrocodeine and diazepam and slept. Not that I felt much better when I woke - yes, it is possible to wake up after that combo and only after about 3 hours as well!!!
The liver pain was worsening and going up my back and as for the nerve effect on my bladder and bowels, I could delay no longer and phoned the chemo helpline and of course, got admitted straight away. Well, I was once we'd got over a miscommunication problem over who was taking me to hospital and who was looking after the children!!!
We arrived at the hospital about 530pm and got a bed in the cancer ward I'd not been in for the last 2 years. All the staff had changed but the reluctant to refill toilet hadn't. I went down for an urgent MRI later that night that showed thankfully, that there was no nerves being crushed by a collapsing spine or any further growth in any other vertebrae which was a relief. So this lump I feel when I sit/lay down in the bath is just my tailbone(coccyx)!! I never have felt it before until recently but then the last time I was this weight or even a stone lighter, I was very fit so I must have been sitting on muscle and now I've got a peculiarly shaped, flat, floppy bum instead of a large, rounded one with muscle and later on fat!!
I saw the junior doctor who eventually managed to get all my tablets written down correctly apart from only prescribing a very small amount of oromorph. Makes sense - come in with worsening and uncontrolled pain and then being prescribed less painkillers than I was having at home!!! Suffice to say, I did not sleep well that night.
Saturday and about 4pm, I eventually saw a registrar who just about glanced at me and my notes and that was that.
Sunday - saw no medical staff at all but was referred to the physio, pain team and dietician.
Monday - saw no doctors, physio, pain team or dietician. I went into the chemo clinic to ensure I didn't get forgotten about and had my chemo on thursday and reassured that it would all go ahead as planned. Really making progress here aren't i!!
Tuesday - hurray - I saw the physio and the pain team who put my pain killing medicines back to what I was taking at home and increased my oromorph to a level that would work. Then the registar from my team came who had just returned from 6 months maternity leave so lovely to see her but a lot has happened to me in 6 months. She said that I'd been admitted under the neuro team on friday and although on a cancer ward, they'd forgotten to refer me!!! I did have an xray of my tummy and they gave me 16mg dexamethasone to reduce the pain and swelling in my liver. The xray showed I was constipated - I knew that already but never mind.
Wednesday - the dexamethasone (steroid) has definately improved my liver pain and swelling and don't even feel manic. Was seen by one of my consultants who specialises in radiotherapy and have only one very small dose of radiotherapy left for my spine so don't want to use that option up now. Reduced my dex to 8mg so pleased as steroids have such awful side effects and to be on reducing doses. Saw the dietician who was pleased with my blood results and weight and muscle gain but said I needed to have at least 1 fortisip/forticreme a day and not to have a low fat diet but just a normal one but have high protein foods. I can eat the forticreme things as they are a bit like a mousse but the drinks make me feel sick and I'm sure I now have developed a milk intolerance as pain etc worse if have too milky foods.
Thursday - chemo day. Saw the breast care nurse who would be in clinic, the chemo sister, the pharmacist and the receptionists and told to go down about my appointment time of 11am. I went down and was told to go back to the ward as the team would see me on the ward and have the chemo on the ward. Went back again about noon and 130pm and 230pm and told the same thing. The ward nurses were also told the same thing. By 330pm, I was getting worried and anxious. I knew the clinic finished about 2pm and the doctors go onto meetings about 3pm and unless the chemo drugs were authorised by the someone at registrar level or above by 3pm, pharmacy wouldn't make it up and the nurses would run out of time to give it to me. So guess what happens - nothing!!! Apparently, I was told at noon to sit in the waiting room and I would be seen next and then I disappeared. That was not what I remembered hearing and anyway, I was only 100m away round the corner in the ward and they have telephones so could have checked if I was around so why did they leave it?? Mum and I got very distraught but nothing could be done so had to wait until friday.
Trying to look on the brightside, the pain team came back and have now changed to 60mg slow release morphine (MST) and they wanted me to stay in the night to make sure i was OK on that dose so even if I'd had the chemo I would still have needed to stay in!!!
Friday - I saw my chief oncologist first thing. He said I was the first person at my hospital to have weekly taxol after the gem/carbo as usually women were too poorly to tolerate anymore chemo so I was a bit of an experiment. We had a good discussion about how herceptin has got me this far and how well I was doing and they hoped I would get to the 18 week mark and then review. He had no idea why I was having the problems I was having but plan to continue on the lower dose I've been having for the last 2 weeks. He had no idea why I wasn't seen yesterday but said usually if on ward then aren't seen in clinic!!! I just gave up.
After being told to go to the clinic area and then stay on ward to have chemo, at noon, they called me down to the day chemo ward which meant I had a bed to lie on and I got my ward dinner rather than manky sandwiches. Eventually had my chemo and came home so now only 6 days between chemos. Pain seems better anyway.
Sorry for the delay in letting you all know what happened in the last 2 weeks - I had asked Magnolia to let you know where I was but think she was busy at college or something!!!!!

Overdoing it again - will I ever learn??!!!

After my fall, I did spend a quiet sunday, mainly resting - honestly!!!

On the monday, it was the twins inset day. We'd been told on the thursday that school was shut on the monday - not very helpful. One of our friends who helps us out a lot was stuck for childcare so I looked after her which was no problem and made me feel better that I could help out for a change.

I took them out to an indoor playcentre and then onto Pizza Hut.The place was empty which was good so I could sprawl over the settee and rest my sore knees, back and swollen ankles. When we got home, I went to bed for a sleep as hubby was due home in the next 30mins and I could go on no more.

Tuesday, I didn't go to the hospice as I went shopping for a few bits for my wine evening for MacMillan's Biggest Coffee morning event. I had help tidying and moving furniture and getting stuff prepared and from 8pm, had a brill time entertaining and drinking and of course, fundraising. We had a good time and did raise money but didn't look into the box then to find out how much was in there. Rather a late night and we got told off by the children for making too much noise - laughter obviously not approved of by the kids then!!! Again, had plenty of help clearing away and had used paper plates so minimal washing up and what there was went into the dishwasher!!

Not much time to rest as had to be up early on wednesday morning as off to the midlands to meet up with other breast cancer friends. Met one of them on the train which made the journey seem shorter. We met up in the coffee shop before heading for Waggamammas - wonderful food and so wonderful not to have to worry about if I can eat anything there. We all marvelled at how much we had all changed physically and I suppose emotionally as well. I suppose it is nearly 2 years since we first met and a lot has happened since then. 2 of us have had further, serious secondary spread and another died in may 07 so that's a very sobering thought.

I never would have thought in Oct 06 when I met up with this glorious group that I would still be alive and well enough to travel on my own, let alone go marching off through the shops without my stick or oxygen, trying to find a scarf as I was so cold or that we would still be friends and in contact with each other and helping each other out - often emotionally but we do give each other some hard but honest advice/telling offs sometimes.

Some groups work well together and I think we were/are so lucky that we all met each other at this Breast Cancer Care conference in Exeter, October 06 and stuck together. Not sure if the facilitators felt the same way though - there's always one nayghty table at these events isn't there!!! We have all had our good and bad times with health, family and work problems but it has been so much easier to get through to have this group to rely on.

That is not to undervalue any of the contributions that other women with breast cancer that I have met subsquently either in the cyber world or actually met who constantly give me emotional support and advice (and say wonderful things about me - but then they can as a lot of people don't really know what a different person I am in the 'real world'!!!) as I would never have got through this phase in my life without them. It's just a different level of friendship when you meet as a group and stay as a group.

The value of any of the forums I've used has been remarkable but it can also be very sad when women die from this crappy disease that you've got to 'know', even if only briefly. The knowledge I've acquired through the use of these forums and meeting other women in similar positions has, I'm sure has kept me alive.

I've met some wonderful, local women with this disease who have visited me frequently in hospital that I have met via the forums or some other way and that is also so very helpful and such a boost to me and relieves the pressure of other family and friends to know that someone is seeing me and getting me things.

As for my family, friends, neighbours and work colleagues - now worried I've missed someone out - sorry!! - they have done the most amazing things for us. They are all such stars.

Hubby and I often are reduced to tears by people's generosity - especially at the start of my illness when we didn't know some that well and yet 3 and a half years on, they are still continually here for us. It's amazing.

As for all the anonymous people, and people that we may have met only once who put themselves out to help us and are so generous with their time, gifts, food, trips out, housework, decorating, donations, looking after the children or treating them to things etc - These are the people who should be getting the OBEs etc.

What is so special about us? I'm just an ordinary person with a family who has been dealt a bad hand with health. Why are so many people willing to help us? We definately hit the jackpot big time with this side of things and we are eternally grateful for everything that anyone (in the real and cyberworld) has done for us and makes me feel confident in the future will support hubby, Woody, Laura and AJ after this ***** disease has killed me. That gives me peace in my heart that they will cope afterwards which I need - especially being the control freak I am.

We are also so amazed that these same people also help and support any fundraising attempts that we and others make. At the moment, one of hubby's friends runs marathons to support my hospice which is fabulous and we've had so much money donated to charities that have helped us out, that I am constantly stunned.

This 'give and receive' has also had an impact on our children and they are very aware of the need to raise funds for charities and of the need to help others less fortunate than themselves. Woody did the Sports Relief Mile and is doing the Great South Run for the hospice at half term and Laura and AJ spent last saturday selling left overcakes and collecting donations for the MacMillan Cancer Relief Coffee morning so they are learning good examples from all of you as well.

Gone right off track now - right - how my family dread that word - it means I expect urgent action from them!!! - where was I? I think I was in Waggammammas or just about to leave anyway!! Really enjoyed the food and company on the wednesday but knew on the journey back to the station that I'd overdone it as had to cling onto one of the gang to walk back to the station as felt shaky and too tired to manage on my own. Problem is, I look so well so trying to get to my seat on the crowded train when nobody was going to move quickly so I could sit down before fainted was nigh on impossible. I had a reserved seat which I could see but not get to and asked if I could just move forward so I could sit down before I fainted and was told by a posh voice to be patient as we all had to wait. I'm afraid to say that I shouted back 'we don't all have terminal cancer. I need to sit down before I fall down' . I got to my seat but before falling asleep, I did apologise to that woman. See the halo is slipping!!! As further revenge for being rude, I got woken up by really bad cramp and pain in my hip - so is there an alternative universe keeping me in check then? The oromorph and diazepam helped the pain and cramp anyway.

I really struggled to get off the train and just couldn't find the strength to climb into the London type taxi to get me home. The man had to help me in which was a bit embarassing.

Although home by 730pm, I was absolutely worn out and in bed soon after.

That brings us back to chemo day - thursday. I saw the 3rd oncologist in 3 weeks so it is difficult for them to know if they are measuring in the same place each time but it seemed to measure smaller and the skin secondaries are less pronounced - more like old insect bites now and the purple dimpling has just about gone and as I keep saying, my ability to swallow is amazing and feels like a miracle. It would have been about a year since i could eat as easily as now and my breathing is improving and my liver tests are fine so it feels miraculous at present but there is always that niggling doubt especially after my liver in July that it could all go pearshaped at anypoint and very quickly. It is easy to forget that and my abnormal life feels normal now. How 'well' I am is measured very differently from your usual 46 yr old and so if people ask me how I feel, I just say I feel well as I'm so much better than I was and it feels 'well'.
Taxol - the current chemo - effects nerve endings and my fingers and toes are getting more 'numb' but not that much worse than usual. The nerve it seems to be effecting are my bladder/bowel ones - you really wanted to know that didn't you!!! This time, the taxol effect was more marked but as I was holding my 'proper' MacMillan Coffee morning the following day, I just got on with it and didn't cancel. Again, I had plenty of help and I didn't make one cup of tea or coffee - all guests did their own or each others and as hubby was home, he helped tidy up afterwards. I rather overate some wonderful cakes with butter icing on and knowing who they were cooked by, I know they had real butter and cream in - not a great idea from yours truly.We had a lot of cakes left which we stored away and as I said, the next day Laura and AJ went up and down the road with the cakes and biscuits on a trolley and labelled with their price and raised £25.
The total money donated was £195 for MacMillan's Cancer Relief Biggest Coffee morning and the orders from the Breastcancer care catalogue was £100 and from the MacMillan catalogue another £80 so I will let you know when these arrive.
You are all such stars donating so much and I'm so thankful for all your help in making the events enjoyable and for the help you gave in donating, ordering and making your own tea and coffee and tidying up etc.
Then it was friday afternoon..........

Goodwood Revival of Speed
It was odd getting up at 630am and not a child in sight!!! Never normally up before 730am and often later!!! We got dressed up in our 40s gear - I forgot my matching accessories and felt odd all day without my matching earrings and necklace - just ask my sister about that - 1980s plastic, matching jewellery!!! I decided to put on my not so high red shoes rather than my flat black pumps as I would be in the scooter all day and took my folding walking stick so I would be OK when walking.
We never left till 8am - how did it take so long to get 2 adults ready.?? Loved my red lipstick but stained my lips all day. Put my wig and hat on so we looked the part. Hubby looked a real 1940s spiv - he found the braces odd and said it felt as if his trousers were going to fall down all day. He'd brylcreemed his hair and cut his moustache and had his trilby on. Great photos. Also went in the morris minor which was 50 yrs old - didn't have the top down on it till the way home as very cold on way there. I snuggled down under the fleece blanket on the way there!!
When we got there, it was brilliant seing so many people dressed up in clothes from 1920s to 1970s. Mainly, people dressed from 1940s - 60s. Why do fat people wear those 50s drindyl/circular skirts with all those petticoats so they look twice the size!!!! I'd really wanted to wear one but didn't think it would be a good idea in a scooter - show all my underwear off and I wouldn't see out!!
We met hubby's friend who was very naughty and got us some passes into the posh March Enclosure. It was wonderful. Very posh - lovely restaurant and proper toilets - no portaloos today for us!!! It was also opposite the opening to the paddock and near the startline and the disability ramp had a brilliant view down the track and the screen opposite. We were also about 30 m from the actual track.
The first part we saw was the parade of all different vehicles including a policeman on his bike, a Basildon milkfloat, fire engine and a 50s caravan.
Then there were different races according to age of car and cc of car, I think. I just know the first set of girls who held onto giant labels which said where the start place was for each position were wearing very short dresses and plastic boots!!!
We were first of all in the shade and I got cold but as the sun came round, I warmed up and eventually fell asleep for the entire 30 min race. How could I sleep through motorbike powered cars 30 m away for that long!!!!
We really enjoyed ourselves watching the racing, watching people and watching airoplanes like spitfires. I supped my way through the thermo of tea before lunch. We'd bought some sandwiches in Tescos on the way there so felt rather odd doing that in front of the restaurant!! We did go there for a cup of tea but by this time my ankles were swelling so thought it best to walk there. I was holding onto hubby and my stick and he did the gentlemanly thing of opening the restaurant door and as I stepped forward, my stick slipped and I went flying forward onto my knees. My hat fell off but not my wig and I cut my knees on the metal gridway but no laddered tights and it really hurt my back and hip as well. After being helped up, I hobbled into the restaurant to try to restore some dignity and get my hat on and hubby bought me some more tea to calm me down. The pain wouldn't go and I didn't want anyone to know as they would have packed me off to casualty because of my bony secondaries so I supped on some oromorph and dihydrocodeine and eventually felt better. Too much better - so with hubby and his friend we went to the vintage clothes shops and I tried on all these 40s - 60s coats and loved a red one with a fur collar plus a bright green velvet one with fur and then it occured to me that this was real fur and even though it is really old, I couldn't but them so bought a 60s cream, wool one instead!!! The sneaky people had put cash points inside red phone boxes right next to the stalls and the stall holders only took cash!! Someone made a killing that day!!!
We then went onto look at the other stalls before watching more races and going off to the airfield in my scooter and the mini Earls Court repro of a 1950s car show. Loved the new maseratti!! Enjoyed an icecream and then looked at different stalls.
Then it came time to go home which was sad as we had to leave before the end. We went home with the roof down and my hat and wig stayed put!!!
Very stiff and in pain the next day and that was just the beginning of the week!!!