New CT Scan Date
Well something has happened at the hospital to speed up my CT date as I got a phone call this morning to say that my appointment has been forward to monday 2nd March. Am really pleased as last night found quite a few new lumps in the centre of my chest so am now scared and didn't sleep much last night. Think it will be my last taxol this thursday as will get the results of the scan on 5th march and sure will get changed onto vineralbine. Hopefully, they won't give up on me now and withdraw all treatment - I've come so far so want to give the last option of chemo chance. Just scared the scan will show something really nasty and that they will deem me untreatable.

Another Gobby Gang Funeral

I was not really looking forward to today. Our friend who was only just 32 died just over a week ago and it was her crematorium service today, friday 20th February. I met 2 of the other members on the way up to Birmingham and we all managed to sit together and in usual GG manner managed to drink our way through a bottle of Aussie Red in respect to the first member who died 21 months ago now. We got a local train to the station nearest to the Crem but I hadn't really realised how big Birmingham was!! I'd forgotten after London it is Britain's second largest city. We then found a local pub for some lunch and had more red wine before getting into a taxi to take us to the crem. It took about 20 mins or longer to get there as the traffic was so heavy and so we were at the back of the queue which was a relief.
It was a lovely service with lovely music and the chapel was so full that a lot of people ended up standing. I cried near enough all the way through and clung desparately onot my friend's hand and am crying now but wondered at times if I was actually crying about my life and that it will be my funeral next. It made me wonder how the children will cope and my family and friends. It felt so selfish of me to think like that. Of course, I was upset over losing my friend and devastated for her family and friends and wondering how they were coping but I felt I was not only mourning her life but of other people's like my Dad, Nan and those of close friends that I have lost to breast cancer like Moira, Sandra, Dee, Jackie, Jan and Steph and all the others who I might never have actually met or only met a few times but knew from the breast cancer community forums. These named women with the exception of Sandra who was the same age age as me were all under 40. What a cruel disease this is. What a waste of young lives. When will they ever find a cure or even something that is less barbaric than chemo that just targets the cancer cells? It will come one day, I'm sure but too late to save me and 10s of 1000s of women who get breast cancer. The way that I have survived for nearly 4 years now is testimony to the advancement of chemo treatments, radiotherapy and targetted treatments like herceptin and the treatment of secondary bone spread. I am hormone negative so all those hormonal drugs are not relevant to me but of course, have helped prolong and save lives of countless other women. (I'm aware that men get breast cancer too especially the genetic linked one but I don't want to get into the debate about that one - sorry - hope I haven't offended anyone especially as I know there are people who read this blog that have lost male relatives to the genetic linked breast cancer.)
Anyway, the service was lovely and had been designed by my friend. There was a lot of beautiful and apt music and some wonderful tributes from friends and family. The really heart wrenching part was a letter written by her and read in the same style that she always spoke in so you could 'hear' her say the contents. It was a beautiful letter full of wit and the feisty nature that she always showed and with the quick wit and intelligence that she possessed. It was very moving.
We needed to get a taxi from the crem to the Wake as it was about 4 miles away. I got a lift from one of her school friend's but the other 4 got a taxi. the taxi driver did not know where the Hall was and refused to turn the meter off after they realised they had been left in a derelict building's car park as he said he did not know where the correct place was!!! Eventually, he drove them a little further down the road and got very angry with them and so they got out and phoned me to get directions to the correct place which was probably only about a 5 minute walk away.
It was such an honour to meet her friend's and family at the Wake and they were so brave and so welcoming to us. We did appreciate it.
The journey back from the Hall to the local train station and then onto the main train station went without a hitch.
3 of us were on one train whilst the other 2 had a longer journey back to London and beyond. One of the girls in my group, went and got another bottle of wine but it wasn't till we were on the train that we realised she'd been sold a corked bottle and not a screw cap. A female student came to our rescue with a corkscrew from her rucksack!!! We all said goodbye to each other along the way as I had the furthest to go and it felt quite odd to be on my own again for the last 45 minutes.
I got into hubby's car at just before 10pm so had been travelling or out for 12 hours. I was not so physically tired as I thought I would be but it was very emotionally draining.
It has made me rethink what I was planning for my Thanksgiving Service so I will relook at that which is probably a good thing.
I would like to thank everyone who supported me through the day and looked after me.
For my friend - I believe you are in a much better place now and am so glad and honoured that you became my friend even if it was in such awful circumstances. You were brave and feisty and taught me a lot about looking at life differently even though I was 15 years older than you - approximately a third of your short life. It was such an honour to meet your family and friends and do really send them my sincere condolences.
Today, in Sainsburys, I heard a different version of 'Time of Your Life' - you had the Green Day version. It was an inspired choice of music to choose as were the other tracks but then we knew you would choose the correct music for the event as that was one of your areas of expertise. I will miss your witty and moving posts on the forums and miss meeting up with you and listening to what your latest adventure was.
You are a very hard act to follow and I, like everyone else will miss you so much but it has been an honour to be your friend.

The transport turned up at 8am. It takes under 30 mins to get to hospital at half term so wasn't expecting him and hour and a half early so was dressed and had the ol slap on - getting better at the eyebrow painting but had no breakfast or cup of tea. had to buy breakfast at the hospital - really horrible lumpy porridge!!!
Got my recliner and then was told the Registrar would be a little late as was at meeting but in fact my appt was at 930am and she was with me by 945am so not bad at all. Found out that she wants to take lead in my care at present. Was puzzled and then remembered she'd asked my permission if she could use me as her case study for work she is doing with GPs and other medics about living with secondary bc and that it does not necessarily mean that a woman will be dead within a few months when diagnosed with secondaries Remembered when I first had skin mets in Nov 05, my GP told my hubby I'd be dead within 6 months.
I know in many ways I have been lucky in that my cancer responds to chemo but it just grows back very quickly the week i stop but I also know that many women do succumb very quickly to secondaries.She was happy togive me chemo despite my croaky voice due to a cold as it is not on my chest and I don't have a high temperature or anything. She examined my skin met and underlying lump and it has grown massively in 2 days. When hubby and I looked at it 2 days ago, it looked like a small insect bite about 0.5cm but today it is about 1.5cm across and is puckering - rather scary. My swallowing has improved a little so want to continue on that ground as so petrified of not being able to swallow again. Had an xray on my spine and will get result next week as she needs to get old notes to see if can have more rads to my spine. I think I have had the full dose allowable because of the rads i had June 08 that failed to shrink the solid lung one that squashes my oesophagus. When I was down there, I asked about my CT scan and was told it was booked on 10th Feb for 25th feb - the one date I didn't want as it is the BCC secondary meet in Bristol and desparate to go. I feel my emotional needs are just as important asmy physical needs so cancelled the CT and next appointment is not till 13th march so wouldn't get results till 19th march - 4 weeks time.
Have never had to wait this long before and if they'd sent it out last week I could have changed it then and not wait so long. Feeling I've done the wrong thing now as taking big risk. She has agreed in principle for me to have vineralbine so may have to swap to that before CT if my swallowing gets bad in next 4 weeks.
Good news was iron had gone up from 95 to 105 so think it is all the brocolli I've been eating!!!Will ring someone on monday to see if can be sped up as sure the 25th will be have been given to someone else now. Got my friend's funeral tomorrow so will be a long day and very hard emotionally so must go.

Half Term - Feb 2009
We were supposed to have left at 8am according to Pete but did manage to leave by 840am so not bad and had good journey down to Folkestone. When we got there, I went food shopping with mum. Well that was the idea but ended up buying a black track suit as well!! I seem to spend so much of my time now blobbing around and I want comfortable clothes. I just couldn't imagine me in a bright pink or green tracksuit so stuck to boring black!! In the afternoon, Pete took the children down the beach where they had great fun throwing stones and trying to skim them on the water as it was such a calm day. I just sat with mum and went through some old photos and then had a sleep.
About 4pm, my best friend from secondary school for the first couple of years came round. I don't think we'd met since 1980 but my mum has always sent me cuttings from the local news as she was a beauty queen and then went on to organise the local carnivals and is now a part time actress and photographer. Hope I've got that right - please correct me if I've got it wrong - my chemo brain just gets muddled. It was brilliant to catch up. We became friends as we both loved The Osmonds and then I was very disloyal and kept swapping allegiances between The Bay City Rollers and The Osmonds!!! Oh wasn't life simple then when your only concern was when the next single came out. I was far more anxious about that than my homework!!! After that, we always remained good friends and were part of the same group in school but I had really bad Glandular Fever from the january that we were taking our A levels so never went back to school so missed out and actually sat my A levels at home with the headmistress in my lounge!!! I didn't do very well and never realised till much later that so many of our year went back to college to retake their A levels. I always have said I never wanted to be bitter about my past but that is about the only thing I do feel angry about as we had such poor teachers for our science and mathematics A levels and as far as I'm aware, everyone did really well at college. It would have simplified my life at that time if I'd retaken my Alevels and who knows what I would have done instead of spending 1 term at teacher college before starting nursing. My aim had been to do a Pharmacy degree so wonder if I would have done that if I'd got the A levels necessary or if I would have done something completely different. Actually, I'm not sure it was my aim to do a Pharmacy degree more of the schools ambition to get as many as possible of the 'Tech Girls' into university so as to compete with the Girls Grammer School and that was 1980 and school league tables weren't around then!!! Think I should write about my secondary school experiences one day as there were so many odd rules!!! It has only been in the recent 5 years that I have been able to wear brown and green without thinking I'm back at school!!
Anyway, through the wonders of technology, it is now easier for us to keep in contact which is good. Thanks for coming to see me and hope to see you again soon.
Sunday - another calm day and really just stayed in until after lunch when Pete took the kids swimming to the local pool where they had the floats out. Mum and I went food shopping and got a few bits and pieces so that Pete could repair things for mum. Umm and I also bought a short sleeved cotton top and a sort of tunic dress which is very flowery and elasticated over the bosum so looks a bit like a short tent - not sure if will keep it. The problem is sometimes I get so hot that I want to wear summer clothes now and other times I'm so cold I need multiple layers and wheat bags and throws to keep warm. Might try it on again tomorrow to wear over jeans as often hot in hospital and so strip off and then get cold during the actual chemo so have to put the layers back on!!!
After swimming, AJ's skin was really dry and itchy - they seem to use extra strong chlorine there and we'd forgotten to take anything with us for him so Pete ended up driving about 30 mile return trip to get some cream to calm his skin down. I'd forgotten about lack of facilities in Folkestone!!!
I was not going to get involved in cooking sunday lunch at all but with Pete out to get something to help AJ, I ended up doing a lot of it with mum. She's got a conventional oven so it involved a lot of bending down to put things in the low oven but it all turned out lovely in the end although I think the bought chocolate trifle was the highlight!!! We had eaten plenty of fruit for lunch so had made an attempt at eating healthily.
Monday - we all went to a Rare Breeds Farm to met up with 2 other girls from school - are we still girls at 47? Still feel like a girl rather than a woman or a lady!!! Anyway, one of them became my best friend a bit later on at school and we stayed in contact when she was at university and I was doing my nursing training and used to stay with each other in our student accomodation.
I lived in some terrible places including one place which was a ground floor flat shared between 4 of us. The landlord was the meanest person on earth and it was my first experience of sharing a flat and dealing with bills and landlords. The front room had been divided down the middle so the other 2 girls had those rooms which were narrow and I'm not sure what happened to how he divided the bay window up. I had my own room but really it was sharing as the landlord had divided the back room which led out to the garden across about half way back with an MDF wall which didn't reach the ceiling and had a doorway between our rooms covered by a curtain. There fore, I didn't have a window or any natural light in my room but I did have the most massive sideboard along one wall which he wouldn't take away. Both mine and lizzy's bed were supported by bricks rather then having legs!!! It meant of course, which ever of us was on an early would wake the other up as the light came in over the top of the wall and it made it difficult to have anyone to stay. The lounge area was really the hall and had chairs in it that he had repaired himself with pieces of string and rope so were uncomfortable to sit in. The bathroom and kitchen were at the back of the house and next to each other and we got flooded one day in a freak summer storm and the water came into the kitchen, bathroom and lounge and so the carpets stunk. He refused to buy a new carpet and gave us a bottle of shake n vac to get rid of the smell. The gas and electricity ran off coin meters which were in the cellar so you took your life in your hands each time you went down the rickety stairs which were more like a step ladder than stairs and very wobbly. I think we only spent about 3 months there before moving to another flat with another friend but that's another story!! I don't think my parents were too impressed by the flat either and were relieved when we moved out. I don't think that would be allowed now and Idon't know why we didn't ask environmental health to look as I'm sure it would have been condemned!!!
Not too sure how I got here from the Rare breeds farm but there you go.
I think it was because we spent a lot of time looking at old photos of us between the ages of 18 - 23 and we were discussing staying in each other's places. I had also come across some of the letters that I had written to my sister which described what we did and so much waffle it was ridiculous. I seemed to spend a lot of time with hangovers which I don't remember at all.
After we finished at the farm we went down to the beach so that the dogs could have a run around. It was lovely to walk by the sea again but I rather overdid the walk and was exhausted by the time I got home.
Tuesday - Pete took the children down to the beach to look for fossils but all they found was fools gold and then we came home as Woody had a scout party to go to and then my friend came round so that was good.
Today, I intended to rest as was tired after being away and have a cold but by the time the carer had been in to do housework and the other one did shopping for me, the district nurse to take blood and the hopice nurse had been it was lunchtime. Spent some time on computer but not much time. Then I had to go to the railway station to change my ticket as we're going to the funeral on friday of another member of our Gobby Gang. Really did think she'd outlive me but she didn't and was only just 31 so I think it will be an upsetting service for many reasons.
So now as I keep falling asleep at the computer, I think it is time too stop. Let you know about the chemo tomorrow.

Miserable Wednesday Night and What Happened at Chemo this Week.
I'm sure this is too much information so if you are eating or feeling of a gentle disposition I wouldn't read the next paragraph as it is rather toilet orientated.
Since my last chemo, I have had terrible problems with my bowels and been so constipated. The problem that I have is that I don't feel constipated, I just have to remember to keep a mental note of when I've been or not and also I can tell by how swollen my belly is. I also don't get the normal feeling of constipation in my lower bum. I seem to develop a blockage under my ribs which causes spasmodic pains like labour pains. However, this week I didn't even get the spasms.
You will be shocked by how much laxatives I took with no result until the this wednesday night and throughout my chemo on thursday. During the week, I took 2 - 6 movicol a day, dulcosulphate tablets - 2 -5 a day, picosulphate 20mls saturday, monday night and 2 x 30 mls on tuesdays and 20mls senna on sunday night!!! I'd also drank plenty of fluid. eaten plenty of fruit and fibre and still nothing until midnight wednesday night/early hours thursday morning when I started to have horrific diarhhoea. As I was so worried about chemo on thursday and was worried I wouldn't sleep, I took my usual painkillers which make me sleepy and a sleeping tablet but also some oromorph and diazepam.
On reflection, this was not the wisest of ideas as I fell off the toilet in my sleep and bashed my head really hard on the hydraulic bath seat as I collapsed forward. I woken up with my head on my knees on the toilet with totally numb feet where I must have been pressing on the blood supply to my legs so I wasn't sure how I was going to get back into bed so thought if I could gently collapse forward I could crawl back to bed!! Unfortunately, I just sort of collapsed in a heap and surprisingly didn't wake anybody up and yet the bathseat must be against the wall of the bathroom/bedroom and Pete's head would have been directly infront of the seat but it didn't wake him up. I just crawled back to bed and went to sleep.
When I woke up in the morning my face was sore but there are no bruises to see at all. We all got ready for school work etc. My sister and her eldest daughter, Mags had come down the night before. They had had a rude awakening at 630am by AJ who had gone downstairs and switched all the lights and the telly on!!!! Bless him, when he realised, he did turn the lights down and had the telly on quietly but it meant they did not get a whole night's sleep. We left for the hospital about 9am and got to the hospital in good time for my appointment. I was just thinking that I hadn't told the receptionist I wanted to see the chief consultant but the next minute the same Registrar that I saw last week came in. As soon as she saw me, she went 'wow you look so much better. I have no problems continuing with taxcol this week and we will wait for your CT results before deciding what to do.' the only downside news was that the nodes in my neck are stilll there so it isn't a cold related thing that I had tried to kid myself it was and that my iron levels are dropping so will probably need to have more blood transfusions again. my last 2 units I had mid december so that's not bad really.
Now we know the reason why I looked so well and not tired - it's a big thank you to the Benefit makeup company. Their foundation is so natural looking and their eyebrow enhancing wax/powder kit means I can paint on my eyebrows in a more natural way so it's a big thank you to them and the 'Look Good, Feel Better' charity that showed me how to apply make up correctly after 30 yrs of obviously doing it wrong!!!
Since I saw the same lady registrar who I saw last week and she wears make up, I was amazed she couldn't see that it was only make up!!! Anyway, feel much happier that I can stay on the taxol till I get the CT done and the results known. I'm in no hurry. The other good thing is that my wbc and neutrophils are still OK and my swallowing is better.
After I'd seen the registrar, I felt really sleepy so kept dropping off to sleep only be woken up by the need to urgently rush off to the toilet as I still had diarrhoea. I went so many times and thank goodness for my sister and Mags or I'd have never got there on time.
I actually felt quite poorly as I was feeling hot and sick and ended up laying in the recliner without my woolly tights and just my skirt and top. I actually needed an extra anti-sickness injection as well. My stomach was also so swollen and noisy like a drain emptying. Whilst I slept, mags and my sister went back to the car and had a sleep there as well!! As I was feeling poorly, they ran the taxol slowly so we never left till 245pm and I had to leave in a wheelchair as I felt too faint to walk.
When we got home, I changed into my nightie and after my sister and Mags left, I spent the rest of the afternoon and evening in bed with my wheat bags.
My friend did come over and we had a lovely chat in my candle lit sanctuary.
Today, I'm having a duvet day and have spent the whole morning in bed apart from putting some washing on the line!!! Never a blog goes by without the washing being mentioned. Perhaps I should rename this blog 'the blog about washing'.
My stomach feels more settled but I'm doing the usual friday thing of having a bright red face. Think that's me up to date now.

Dreaming of Normality
One of the threads on the forum has been about mentally and physically having non-cancer days which got me thinking. The following is a rework of my reply so sorry if this sounds familar.
I think I have coped living with secondaries by trying to have a degree of normality but my normality is so different for a 47 yr old and I now can't imagine a 'normal' life at all as sadly cancer effects virtually everything I do. This disease has robbed me of too much to allow me to operate at anything near my normal capability so that in reality I can't have 'non-cancer' days.
In my dreams, I have non-cancer days but nearly everything in real life is effected by bc.
In a dream world, today Iwould like to go up in a hot air balloon over an african reserve park. and see all the animals grazing or walking around. I would have pink/rose champagne and Gordon Ramsay's Just Deserts Chocolates. Sounds so blissful rather than being indoors on a lovely, brigh sunny but very cold and windy day!!!
In a more realistic today's world, I would like to be able to use all my fingers so I can type this quickly and accurately, not have a swollen belly and diarrhoea or be trying to find a position in a bed or in a chair where my back doesn't hurt, where my heart and breathing rates are normal, my ankles aren't swollen, I have hair and eyebrows, I have no lymphoedema, I have a left boob and my children are not looking scared as they know how ill I am and will die soon. I would also like to be able to eat any food and not have to be careful what I eat or have to eat it slowly or with loads of sauce on so I can swallow it. (not much to wish for then!!!).
As you all probably know, I do loads and go out a lot and I try not to let the cancer stop me doing things but it does. As a family, we have all adapted to 'an ill mummy' and the children have to care for me which seems so unfair. Their lives are dominated by my health - 2 nights ago, the 11 yr old twins were caring for me. My son was preparing the nebuliser so I could breathe and my daughter was heating up wheat bags and arranging my pillows and my 8 yr old was helping me get undressed. That is sadly an increasingly 'normal' day for me. People are amazed by what I achieve when I am so ill but I have always been a driven person who wanted to achieve things and I am a frustratingly stubborn and determined person but that personality trait has I think kept me alive and trying to live normally!!!
For many of us living with secondary cancer, we can not escape from the reality of having cancer everyday as it causes us pain, difficulties with everyday activities that it makes us angry, bitter, cynical, sad, tearful, scared, frightened and living with the uncertainty of when we will die and how that will be and where the next secondary will be etc.
The other thing that has happened with my secondary cancer is that I have got shorter as my spine has collapsed and my hip is wearing through with the cancer. I went on a special height measuring course in 2002 and know I was 173.3cm but in december 2008, I was measured and I was 170.2cm and over the weekend when my pain in my back was so bad, all the adults appeared to have grown so suspect I'm even shorter now and even more round shorter shouldered.

Week between 5th and 11th February

My swallowing did improve slightly after the taxol so I felt it was still working and I was justified in pushing for it.

We also made it off to see Essex to see my sister. It was a bit touch and go weatherwise. The snow had gone where we and my sister lived but in north Hampshire, snow showers were forecasted and for once they got it right as we went through snow showers in Basingstoke and Guildford.

We arrived at our Premier Inn about 9pm and dropped our stuff off before going to my sister's and dropping Laura off. somehow, even though I'd tried not to lift anything, I must have done as my back and shoulder had started to hurt. We returned to the hotel and I slept well despite the boys talking in their sleep. They are both so chatty at night. Woody was playing some kind of Playstation game in his sleep!!
Saturday, we went to Tropical Wings which is a bit of a misnomer as there are few wildlife with wings!! There were some beautiful butterflies and cockertoos, parrots and birds of prey but a lot of tortoises who weren't randy for once. Perhaps the cold had dampened their ardour!! Outside there are wallabies which were so cute and we could feed them. Quite a few had joeys in their pockets and they would poke their heads out which was so sweet. There were also some hilarous chickens who walked stiff leggedly and had really long, fluffy legs. They were even funnier when they ran and we regretted not taking a video with us as I'm sure they could have made it on to 'You've been framed' .
Sunday, my sister and Pete took the 5 youngest children off to the local park and I spent time on the computer. Somehow the sunday dinner was late so Woody was able to watch the arsenal vs Spurs match he wanted to see!!!

Our friend and hubby started work on decorating the kitchen. Our kitchen was extended in an odd way as you would expect by the previous owner. Our friend started at the 'wet end' (it can not be described as an utility room!! This was the original narrow galley kitchen and has the sink and dishwasher in and the only radiator. They chose an off white which was supposed to have a hint of peach in but once on the walls, it seemed to have a greenish hue so looks odd when you look from the other end out to the hall. The idea is to have a black and white kitchen and i think we are going to have to put in some kind of lino to get the floor to match as at present there are orangey ceramic tiles on the floor which have been laid very unevenly so that the kitchen door scraps over the floor. Why he couldn't have levelled the floor off evenly before laying the tiles only he knows!!! I don't mind them but Pete hates them but we can't afford a whole new floor and I couldn't live with the disruption it would cause either. We've also got to make a decision about the cupbiard doors. 1 of the doors rotted away by the hinges s we have either got to have new doors for the whole kitchen or take the doors off at the 'wet end' and put the things that are mainly cleaning things in baskets and have no doors or put curtains over the gap. I fancy either no doors and baskets or a curatin whilst Pete wants to make new MDF doors so we'll have to wait and see after costings and time available.

I went to the hospice on tuesday and it was quite sad as in the last month, 3 of the people who had been going for the last year like me had died. We had a quiet morning and in the afternoon we had a little service for them and a copper leaf with their name on was added to the remebrance tree in the Quiet room. It was a lovely service.

Also one of our friends from our Gobby Gang died so that was upsetting. She was only 31 and had had a really miserable time in the last year and especially since June. We've been making very tearful phonecalls and texts to each other since.

Wednesday morning is always busy as the district nurse comes to take blood and flush my line and 2 sets of carers come in to do house work and shopping.
After they'd gone, I got taken out shopping with Debbie. I decided to walk as we were only going to one end of town. I did buy some more of that wonderul foundation -the company is called 'Benefit' and not whatever it was I called it. I also bought some combined wax/powder to put in my eyebrows which are not growing back. They've come back at the part closest to my nose but the last 2 cm are missing and the pencil looks so false. I'm also concerned that my hair on my head is coming back so patchily. I had it cut recently to blend in more the bits that didn't fall off and the new growing in. Looks like it needs doing again. There's a lot more white hairs this time. I jus hope it doesn't come back in such tight curls or so black. it will be a releif to have hair as it has been so cold especially the back of my neck.
Debbie and I had had a lovely lunch from the Stir fry section in John Lewis. I think we could have done with one meal between us as it was huge. We did a bit more window shopping and then treated ourselves to a cake and coffee or rather Debbie treated me. Thank you. Still need to return the tracsuit bottoms and zip up hoody I bought in Primark. The trosers are too wide legged andI'm scared I might tripup and the top's sleeve is too tight for my swollen lymphoedema arm. Laura liked hers and I bought some t shirts and trousers for Pete which are fine.
When we got home the kitchen looked amazing. it looked so different being bright white and so much better. I think we will put new tiles on top of the old ones rather than repaint them as it will be quicker and less messy but think we do need to get kitchen work top as the exisiting one is brownish and won't go with the black and white. Unfortunately, the dust from the kitchen decorating really effected my chest and by the evening I was in a real state but the twins came up trumps and Woody organised the nebuliser and Laura organised the wheat pads and pillows and Pete got AJ to bed. Can't wait to see what it looks when it is finished. Our friend is coming back next week when we are away - expect he'll get on much better without us being around.
thank you to everyone who has helped us this week especially Pete's friend and Debbie and others who have cooked and shopped for us.

Taxol Failing and Further Spread
I started an 18 week course of taxol on 16th August last year so was supposed to have had the last one on Christmas Day but due to hospital admissions,eurodisney,christmas and new year, I had the 18th today It seemed to be working as my liver function was normal after my blockage in july and i could eat normal food as my tumour squashing my oesophagus had shrunk as I had been on 1st stage baby food from april to sept last year. However, since christmas my swallowing had become more difficult but had improved through the 3 weeks in january when I had the chemo. However, only missing 1 week last week I'm now back to regurgitating bread etc. I was hoping that by having more taxol which I'd been promised previously would reshrink the tumour. However, the Reg I saw today feels I am too tired and that taxol is failing as my skin met has reappeared and my breast lump has returned. I also pointed out that I felt I had some swelling on both sides above my collar bone and my hickman line was hurting where it disappears over that area. She had a feel of my neck and says I now have further spread in my lymph system in my neck so wants me to stop the taxol and have a CT scan asap - means 2 - 3 weeks and come back to clinic after the cT. She said I looked too tired to continue but my blood tests were absolutely fine and hadn't changed. I'm not anaemic and my wbc is respectable. I want to continue until I have my CT scan as I know how aggressive my cancer is and if I stop taxol now my CT scan will show huge growth whereas if I stay on taxol it will be a mixed bag hopefully and I will be able to swallow. She was going on about my quality of life not being good if I am tired and to me, my quality of life is more about being able to eat normally with my family even if I sleep more in the day. The children would prefer I could eat normally and have an afternoon sleep than regurgitate and eat pureed food and be active.It occurred to me when I got home that I hadn't put any make up on this morning when I usually do wear it to chemo so I'm better at doing my makeup than I thought I was - thank you Beneficial all in one foundation! (Am running out so thought i'd buy a cheap version as now on benefits but think I will buy the same again if it is that effective!!!)Am scared that it has spread whilst on chemo but actually think it grew during those 4 weeks off over christmas as last time it only took 3 weeks for the liver one to appear and make me go yellow so it probably did grow during that time. Also, if stop taxol now I'll be back to pureed food in 2-3 weeks and I just can't face that.Am I being unrealistic to push to stay on taxol for 3 more weeks to see what CT scan is like and to see if it does improve my swallowing and shrink my lumps and skin ones.I really have reached the end now of chemo options unless they are willing to let me have vineralbine again which they were in November after I recovered so well after nearly dying. Next week, I will go with someone who can fight my corner and I will see the consultant rather than the Reg.Came home very upset and tearful but at least this time I had managed to talk to one of the chemo nurses about what had happened today and she was really good and did spend quite a lot of time with me.I am not ready to die - I still have a lot of energy and my breathing is OK but knowing how aggressive my cancer is if i don't have chemo I will be dead within 8 - 12 weeks and having pushed the boundaries this far, I want to push them further and live a little longer and I am so scared of not being able to swallow as it was so awful last time. I know I can't go on much longer - my heart is bad, I need diuretics and my lung function is poor but I have a reasonable but limited life and i just want a last chance. I live too far away to go on trials at the marsden as it would defeat the object of staying alive if I'm not here half the time.You're advice pleae - should I just accept I've reached the end or do I push to stay on taxol for 3 more weeks and switch to vineralbine.
I do mean to go back to telling you about eurodisney asap but other things are more important at the moment.

How Do I Post Links and Photos?
I would like to add the odd photo here and there on this blog and also I follow some other blogs which I think if you enjoy mine you'd also enjoy theirs but again I can't seem to do it. Please could anyone help me - especially those who use blogspot - on how I get the other blogs listed on the side and how I get photos on!! Sometimes I seem to be such a useless techno-bod

Disney Character Breakfast

Despite going to bed at midnight we had to be up at 8am to get the shuttle bus into the Disney Village for our Character Breakfast. It was a really grey day so somehow it didn't click in our heads how cold it would be outside so we didn't put on our extra layers before we left the hotel!! So silly of us and we'd packed our warm layers as well so spent a lot of the day being cold. Poor mum kept shivering so much I was really worried about her. She just didn't seem to be able to keep warm at all so if any of us were on a ride then we tried to get her into a shop so she could warm up.

We got to the Disney cafe at the end of the first sitting so saw the Chipmunks, Goofy, King John and, of course, Mickey Mouse (why are they so obsessed with Mickey Mouse!)??? We got our photos taken with them and collected their autographs. Then we could start eating and for me to start drinking fruit juice and tea. The breakfast food seemed better than 3 years ago and Woody and AJ really enjoyed the sausages and bacon and I had some scrambled eggs. It was the usual croissants, pain au chocolats, bread rolls, yogurts, ham, cheese, cereal and my favourite - creme caramels!!! Laura and AJ were happy with their hot chocolate and Woody drank his apple juice. I kept making the children eat as much as possible so that we wouldn't need to eat lunch as it is so expensive now due to 1 Euro = £1. We also saw some strange raggedy cat creature which the children thought was something to do with the Aristocats but who knows.!!! (Pictures are on Facebook - I can't seem to operate the photo function here!!!!)

When we left, we passed the RainForest Cafe so booked a table so that we wouldn't need to queue at the end of the day.

We got into the Park about 1030am and equipped ourselves with maps and timetables of shows and appearances of different characters.

We got onto the train without queueing at all and planned what we were going to do and which chracters we wanted to 'meet and greet'. I drove the rest of our party mad as all I wanted to do was to meet and greet Winnie The Pooh and get our photos done with them!! Firstly, we stopped off at Mickey's Winter Show which we all enjoyed as it was quite fun and they were iceskating which we all enjoy watching.

We got into the queue to see Winnie the Pooh about 15 mins before the end of his meet and greet times. This time, there was Winnie the Pooh, eeyore and Tigger so was pleased about that but would have been good to see Piglet too!! It was so dooly organised as every 10 minutes or so the characters would go off the stage and up to the behind scenes doors and then reappear again and we had no idea if they were coming back or not. Eventually, one of the helpers roped us in the queue in so that no-one else could join. They did photos with each adult and children and signed autographs so it was very ling winded and we must have spent about 40 minutes waiting for our turn to have our photos done and things signed. Anyway, I bought 2 official photos as they were quite good but it was only after I bought it that I realised the prints were 6 x 8 and not 4 x6!! The frames Disney sold were all 4 x 6 or 10 x 8 as well but the photos were the other size so very strange!! The photo that is on my digi camera loks OK so hopefully can get that printed intioa 4 x 6 format so that it will fit into my lovely Winnie tthe Pooh frame that I bought in the Disney Store here.
AJ and Laura went on the Indiana Jones ride and when they came off, they were so excited as they done a full 360 degree loop. I hadn't realised that when they went off to do it but they were so pleased with themselves. they also did the runaway tarin thing which is what I wanted to do but Laura wouldn't let me as she said it was too bumpy and fast for my back. I did do the Buzz Lightyear ride which is where you sit i a carraige and fire a laser gun at Zs and score points which was great fun. Laura and AJ also did the Space Mission 2 ride which is very fast.
All mum and I managed was the rides in Fantasy land for toddlers. we did the Little World boat ride with the very annoying song and did the cup and saucer ride.
We ate a crepe for lunch but it was outside so we were so cold still but there was nowhere up that side where you could sit for just a drink inside. Lots of birds came round us for crumbs which excited Laura a lot and then a man came and swept up all the crumbs that another family had left behind for the birds which was a shame.
After that we saw the parade which was good but it was a shame there were no parades in the dark as they look so spectacular.
It was so much quieter than last time that it was lovely to go round and not be pushed around by other people or queue.
We went off to eat at the rainforest cafe and did the meal deals to keep the cost down. AJ was upset we didn't get a table by the gorillas but apart from that it all went well and we went back to the hotel and the children went off swimming again till 10pm. We all slept well that night and had rearranged our breakfast time so we could get a lie in or at least that was the idea.

Eurodisney and Air France
So for the second day in a row, we all got up at 530am and arrived at the airport. It was a foggy day so it didn't bode well. We got the assistance through the security again. The help at the airport is fantastic. The person who took us through told us due to the fog the plane had not taken poff from Paris and it was up to us whether to go through or not but there was slightly more to see and do once through security.
I did find it odd that the security people did not want to see my doctor's letter as I was carrying syringes and needles. I had the potential to take my own blood and threaten people with it after all but they just put it through the machine and gave it all back to me!!
We were told the flight had been delayed and then told it was delayed it to 1045am instead of 915am. One of the passengers was there from yesterday and she was asking the flight organisers what was happening and she was very calm but insistence. One of the airport staff got very angry and was shouting at her and me despite neither of us getting angry with her!! At 1015am we were told the flight was cancelled!!! As we queued to find out what was happening we found out we were off to Heathrow to get the 4pm flight!!!! As I was classed as disabled they provided us with a taxi whilst the others got the coach.
Terminal 2 was lovely and quiet and small so we could get round easily and passanger assistance was good.
On the way up to Heathrow, I looked at our tickets to see that the return ticket was booked for thrusday and not friday so when we arrived I went to see Air France. I found out we were booked on flights for both days!!! She hand altered our tickets to read 30th!!!! I also asked to see if we could book our seats for the flight now as check in was not for another 1hour or more and I wanted us to sit together. She did that for us and so I asked about later flights back on friday. She could not get us on the 915pm flight back to Southampton so we changed from the 345pm flight to Southampton to the 1900 flight back to Heathrow. I demanded they paid for us to get back to Southampton by taxi. She refused saying that their obligation was to fly us back to Southampton and that by refusing the early flight I was responsible for us to get back home. I pointed out due to them we'd already lost our afternoon in Paris and by coming home on the early flight we lost friday as well and we'd paid for 4 days passes. I never agreed with them that I accepted responsibility for us to get back to Southampton and left it at that saying I would make them pay.
Thye plane left at 4pm and I was so pleased it was an airbus as it was a much smoother journey than going on a turbo prop plane from Southampton. AJ had been scared by landing and takeoff after our bumpy experience from Lemnos so he felt much happier after takeoff to see that it could be done smoothly and without all that painful earpopping. The other good thing was that the flight was only 45mins instead of 75mins.
We arrived at the Charles de Gaulle airport and again was impressed by the assistance we got and the speed that our baggage arrived. We easily found the coach and set off to the Eurodisney Resort.
We arrived at the Hotel at about 730pm. As we got off the coach, ny coat got caught on the handle and the pocket ripped and I fell forward onto my knees. I was so embarrassed and desparately wanted to get off and into the hotel.
We were given a room in the new part of the hotel which was quite a hike away from the lifts and the hotel facilities and the room was cold so we turned the heating up and unpacked. It was as the heating worked we became aware of a strange smell and the room with the bunk beds in smelt of sewers and then noticed a dried up patch of sick in the doorway between the 2 rooms. Laura took responsibility and went to the reception and explained our situation. One of the staff came up straight away and agreed about the smell and said they would give us a new room.
I ended up having to repack everything on my own as mum took the children swimming. The staff took my luggage across to the new room but I was still left exhausted from all the unpacking, packing and unpacking and hungry.
Luckily, the 'pub' part of the hotel was still open and we had some food. The children had hot dogs which had cold frankfurters but a hot roll. Mum and I shared a panini.
We were so glad to get to bed but didn't succeed till midnight french time and we had to be up early to go to the character breakfast.