Wednesday was one of those busy days where I seemed to be running round in circles. The day started badly by poor Laura having the runs and she was OK but a very frequent visitor to the toilet - I gave her a tablet which she managed to swallow - that is the first time she had ever tried a tablet so was very pleased that it helped and it that she could manage to swallow it without choking so that wasn't the best start of the day!! The boys left early while I went to get my blood test where the poor practice nurse did struggle to get the required amount out of me but at least it didn't hurt and left me with no bruising. I saw the lymphodema physio in the afternoon by which time my mum was here to keep Laura company and to pick up the kids if I wasn't back in time. The physio is wondering if I have a new growth in my front shoulder area as that's where it is sorest in my upper body. Anyway, she gave me some different bandaging stuff to try to reduce the swelling on the back of my hand - will give it a go as the normal compression bandaging is not reducing that part but does reduce the rest of the swelling. Anyway, now got this ridged foam stuff to use so that might prove interesting!!
Thursday - Laura better but had to keep her off school as they say you have to be free from d and v for 24 hrs before going back school. Thank goodness mum was here!!! My first appointment was with the genetics nurse. This was very interesting as I hadn't realised that not only did my paternal grandmother had breast cancer at about 48 but her mother died of uterine cancer. In those days, they did not always do post mortems so she may have had ovarian cancer whoch is linked to the breast cancer gene or it may have been secondary to a hidden breast cancer. Also on my dad's side, there is a strong family history of oesphageal cancer and stomach cancer which again when you go back to the those years, they could have had oespogheal cancer. Apparently, there is a gene liked to oesphageal cancer but it is linked to extremely hard, dry skin on hands and feet. Apparently, so hard that suffers have to use planers to get rid of it. I was concerned because AJ's skin is so dry but apparently, in this syndrome it is only feet and hands apparently and ironically, his skin is less dry there than naywhere else. The other syndrome linked to oespahgeal cancer is something called Barrett's disease where acid refluxes into the oesphagus and causes pre cancerous changes so people with reflux should apparently be regularly tested to ensure these cells don't change into cancer. My mum and uncle recall that Dad had Barretts syndrome but that was discovered after his cancer had been discovered so a word of warning to anybody who gets regular acidic reflux, make sure you get treatment for it and ask about having a gastroscopy to ensure that there are no abnormal cells.
It is a big decision to be genetically tested becuase it will have such an impact on whether my daughter and sons are at risk and also my sister and her 3 girls. There are 2 types of breast cancer gene, BRAC1 and BRAC2 - one of which is linked to prostate and breast cancer in men so it is important that we know I think. At present, insurance companies are not allowed to weight premiums if you have genetic testing but that is only till 2011. Still, there is no point in worrying until we know my results as if it is not genetical then that will help my children and if it is then we will have to consider options in the future.
My appointment for chemo was 11am and so I thought I would be there forever. However, it wasn't too bad and we out by about 330pm. The onc thought my numbness was due to rads damage but halfway through the herceptin, he came in to say that the neurologist didn't think it was so must be further spread then. Apparently, the nerve originates under the armpit so a bit stuffed then as I've had so much radiotherapy there, I can't have more so would need a change of chemo which I don't want as the next one tends to make people very anaemic and their platelets low and be very tired. I could of course, try another referrel to the marsden about tykerb if it is further spread. If it is in my shoulder where the pain is then i think further rads might be an option. Depressed about it as there are so many things you can't do when you can't grip between your first finger and thumb!!
Friday - went out with mum to look for shirts and ties for the boys. Everything is stripey and didn't seem to look right with the sits. Eventually, found some in Debenhams so now need to nag hubby to try on his suit as he is now over 1 and a half stone heavier than when he last wore it. Hoping he can get shirt to match and then get matching ties.
Saturday - off to town to buy Woody's school shoes and Laura's bridesmaid shoes. The traffic was appalling and for no reason. Then had to pack for going off to friend's house for my hen night and was taking the children with me. Seemed to take ages topack for just one night!!
We had fun and lots of nibbles from different continents before having a chinese takeaway. We thought the children had been asleep but at 1am, we found only AJ asleep and the 4 others playing on their nintendos. This did not bode well as my friend's son who is 8 was playing hockey at 9am and Woody had a cub trip where he had to meet at 850 to catch the coach for a 100 mile walk in the New Forest. It actually was 100 cubs walking 1 mile so not that arduous really!! I got up at 745 and then couldn't get back to sleep as luckily my friend's husband could drop Woody off so i didn't need to get out of my PJs.
Laura woke up at 1030am so at least she got her sleep. We came home about 1130 and I went back to bed for a few hours and that is where I'm heading now!!

Hubby was delivering our new mattress on saturday as he was working. I had to recruit the children into clearing a pathway into the bedroom so that the mattress could be delivered without knocking or breaking anything. Found the odd thing that had been missing for a while and umpteen unfinished crossword books. Not sure whether to be really sad and jsut cut out the ones I would do so I can get rid of this huge pile. We then had a well deserved sweet treat and rest. Actually, the week had caught up with me but luckily hubby had finished work early so spent the afternoon in bed. Then had to go food shopping for our usual pizza treat on a saturday. Whilst there, Woody persuaded me to buy the Mr Bean's Holiday DVD - it seemed the better option than the Robinson Family - honestly!!! Hubby hadn't seen the film so he found it very funny.
Beginning to panic now about my numbness and swellng in my arm. Trying to convince myself that it is innocent but have an awful feeling that there is either spread up in my shoulder and now not sure if there is a lump in my neck as well. It doesn't help that about a month ago, one of my friend's who had previously been clear from her cancer, developed secondaries whilst on chemo and then was diagnosed with tumours in her brain and so has been very poorly. It also would have been my Ozzy's friend's 40th birthday on 22nd September and it is also the first anniversary of the death of another email friend who died very quickly so feeling very vulnerable at the moment. At least, I've got the wedding renewal day to organise to keep my brain busy with other non-cancer things.
Sunday, I went to London to meet the rest of our little gang to 'celebrate' our Ozzy's friends 40th birthday. I could not find the venue so one of them had to come out of the place to meet me outside The Hippodrome and we still couldn't see each other until we were about 2 foot apart!!! The wine was lovely but not so sure about the food. We shared tiger prawns in a chilli sauce and satay chicken which tasted lovely but portions small. I then had pasta which I had to send back as it was cold. They did reheat it but it was a bit disconcerting!! I then had pavlova as that was one of my ozzy's friends favourite dishes so we felt we could not let her down by not having any. Again, this was very soft and undercooked. That night I flet very hot and quite unwell and by the morning, the toilet was fast becoming my best friend. I perked up after 4 imodium tablets in 4 hours and was jsut about well enough to go out to meet my oxford friend for coffee at Mand S. They have changed the location of the cafe but it is so tiny now but at least you can hear each other talk. Presumably, when they have finished upgrading the store a bigger cafe will be built - I love their coffee and cake!!
We had a nice afternoon chatting etc.
In the evening, the twins and i went to see one of the secondary schools. It was shambolic!! The problem is they are closing the local mixed school and building a new Foundation Academy run by a Christain based organisation. This will be built on the existing boy's school site which is probably just under 2miles away. The teacher's from both schools are having to reapply for their jobs as they are combining the 2 schools so not many teachers turned up and some of those that did were not bothered about talking to parents. Saying that the prefects doing the tours were wonderful and there was some impressive artwork etc up. The head teacher#s are leaving so it will be a new head with a mixture of new and old teachers. They can not say when the new school will be built - apparently the council have been so slow in trying to access money the new school may not open till 2011/12 when the twins will be in Year 10!!! The old school is in desparate need of new facilities yet the one they are closing down has recently been refurbished. This was all supposed to have happened last year but cos of the council's laxadasical attitude and competency, it still has not happened. All Oasis wanted to talk about was what their ethos was all about building confidence and life skills and nothing concrete about actaully getting an education to get GCSEs. Most schools are pushing the life skills anyway - what I want is to know that the level of education will be good. I don't think the school did itself any favours by showing us the 'exclusion' rooms where unruly pupils are kept/taught!! Not the best selling point in the world is it!!!!
We have to make a decision by 19th Oct so going to see another school this evening. I have spoken to this school's deputy today who gave me much more faith that their pastoral care is good and obviously for us this is a big facor. Will have to get a letter from the school or maybe the onc so that the children fit into 'special needs'category as it is out of catchment area but the junior school is still a feeder school to this other school but it was previously an all girl's school so you have that worry about how much experience the teachers have of teaching boys. Hard decisions that I don't want to make!!
On the wedding front, thanks to everybody who has replied and have been busy talking to the caterer and bought banqueting rolls and napkins. Now need to sort out cutlery - thought you might appreciate that if you are coming and the glasses I need to get. Bought plastic cups for the kids and soft drinks but want something better for the adult drinks.
Need to distract myself again as hand is going numb and of course have now developed neck pain since the onc suggested I could have secondaries there!!

Last weekend, I took the children to see my sister so we could go to Woburn together. Unortunately, during that week, my sister's father-in-law had had a fall and died which was a huge shock. We made the decision that we would still go but we would stay in a premier inn. Definately better quality than the travel lodge we stayed in. This time we had a proper third bed and a deeper bath!! Basildon has a liking for double roundabouts and I just couldn't see a building with a purple sign. My sister and her hubby couldn't believe we couldn't see it so she had to come out and stand on the corner of the roundabout so that I knew which exit I wanted!!
I could see the orange Beefeater sign but not the purple sign until we pulled up!! However, in the morning I could see why my family couldn't understand why I could miss such a building. In daylight, it is perfectly clear to see but just not lit up at night.
We went to Woburn the next day which was good fun and I loved driving round the safari apart from when I got blocked in by cars next to a sign which said 'do not stop as bears will tear off your wing mirrors' plus a bear plodding by a few feet away from the car!! The baby Macques were cute and there was a moment when the safari staff had to head a rhino off as it looked as if it would charge into a car. We did not get sat on by monkeys - they seemed to like red cars we decided!!
There was also a good play area and we went on the swan pedalos. sis and I managed about 10 minutes of pedaloing whilst the children were unstoppable. No-one fell in though!! We also had a good time going around the lemur enclosure as you could stroke them and we watched them being fed. The penguins were cute as usual and one seemed to be in hyperactive mode - wonder if they gave him steroids!!! The seal show was impressive as was the elephant talk so it was a good day out followed by a takeaway.
I had a good rest the next morning inbetween packing - check out time noon so made the most of that and brother -in-law's culinery skills for a cooked breakfast and a roast dinner before heading home.
Monday - we saw the vicar about retaking our vows and trying to choose readings and hymns. We also saw the hall and were trying to work out how much banqueting roll we would need and how to set the tables up to how many table decorations we would need. That night, I had a cava tasting evening with 2 neighbours which went on to 120am!!! This wouldn't have been so bad if I hadn't done the same thing the next night with 2 other friends and although I was home about 1130, I couldn't settle till 1am.
Tuesday - I saw the chest physician who explained a lot more to me about lymphangitis and how it interferes with the transfer of oxygen into the blood stream. My transfer rate is only 55% and it should be 100%. That must be my number as my heart function is only 55% as well. I'm amazed I can do as much as I can and not get too breathless. All that aerobics and gym work must have paid off in my dim and distant past then. He was very charming and helpful and said that my right lower lobe of my lungs has collapsed and there is nothing they can do about that as it is a blocked bronchiole which has caused this and it is too small to stent. He recommended a very high steroid inhaler and wasn't too bothered about me staying on steroids as the side effects would outweigh the advantages and anyway I wouldn't live that long enough to worry about the side effects!!!! Glad to know he is such an optimist then!!!
Then went to work and out for lunch.
Wednesday - I drove off to east sussex to meet up with others froma breast cnacer support group. it was brilliant to meet up with other people who you only know as user names but often have long chats with. I stayed until 930pm so got home about 11amand couldn't get steeled to sleep until 1am. Determined to go to bed earlier today but it's not happening is it!!
Thursday - waited over 2 hours to see consultant about my numb fingers and lack of movement. Got to go back for xray of neck to check for secondaries there and he will talk to the neurologists to see if should have MRI/CT or ultrasound. However, there is an 8 month waiting list to see the neurologist so may have to pay privately as can't go on like this. Will see what the onc says next week when I go back to see the onc for treatment. Do you think he will have the info - any bets anybody!!

I did have to take Laura to the emergency dentist on saturday morning but by this stage all the pus had come out as she had hit it the previous night with her tooothbrush and burst it so all was left was a huge ulcer. Poor girl.
We then went onto the shop to buy the bridesmaid shoes. These are almost as expensive as her bridesmaid dress!! We then went (shhh - crab fishing) now to be known as 'nipper dipping' as each time we say the CF word it rains!! We took AJ's and Laura's best friends with us. We did quite well with getting small crabs, fish and shrimps so that was a success. I then had to leave early with Woody so that he could take part in a world record attempt to make the biggest neckie in the world at the main shopping centre. This was part of the 100 years of scouting celebration. They had a huge neckie and the foam things that children use to learn to swim with and rolled up this huge triangle of material into a neckie - complete with toggle. It appeared in the local newspapaer and they are applying for it to go in the Guiness Book of Records. It was quite a crowd puller but it was hilarious when the leader called out 'Oggy! Oggy! Oggy' and then there was complete silence from the 12 cubs that were there!! I think they were put off by the crowd watching!!!
My fingers are still numb but the nerve pain in my arm has gone but still struggle to do my bra up. I can't put any necklace on or earrings - I can't cope without my matching accessories!! A hangover from the 80s!! I can't peel veg so the children are doing that but even butttering toast is impossible!!! I have now driven but don't feel very confident in parking or doing hill starts as struggle with handbrake!!
Went out or lunch with my managers on tuesday and they had to cut up my bruschetta which is just plain embarassing!!!
Wednesday - I went up to london to meet mum so that we could go to Buckingham Palace to see teh Queen's wedding dress. We had a lovely walk through Green Park and just caught the end of the Chnaging of the Guard so that was good. We firstly went to the Carriage Mews which was vaguely interesting but I remembered feeling that way when I was 13 when we spent a week exploring london as our holiday. I suppose this time I could appreciate the work put into making the carriages and the Golden Coach is beautiful. It is the only one that looks a decent size - the others are tiny and must be such bone shakers, I wouldn't want to sit in one.!!
We then went into the Italian Art exhibition where we were given headsets so you could listen to commentaries about the paintings which was a good touch.
The last stop was the State Rooms at the Palace itself. Buckingham Palace is much more beautiful on the inside than the outside. again, they provided audiohead phones - as you can probably guess I had problems with mine and ended up trying out 3 sets of headphones until I could get it to work!! There is so much gold embellishing everywhere and it was truly lovely to go. Think they need to recover their thrones though - they were looking a bit thread bare at the edges!!
What they didn't tell you was that there were no toilets at the entrance and no toilets until the end and it could take over an hour to get through the State rooms. Not very helpful when on chemo!!
Most of the visitors were elderly and had trouble walking but there was no indication that there were a lot of stairs and no toilets so I felt quite sorry for some of these people. The Ball Room was much smaller than I thought and I could rememebr my uncle telling me he'd got told off for doing a waltz inthe Ball Room when he visited the Palace to meet one of the Princes about the Duke of Edinburgh Award Scheme. He and another Youth Worker decided they couldn't just walk through the Ball Room -they should dance through it but got told off by a Security Guard!! Spoil Sports!!! I'm glad I saw that room because it just made me laugh to think my uncle did that and now I know where!!!!
The Queen's wedding dress was amazing with something like 10 000 handsewn sequins. It was very beautiful and it and the bridemaid dresses wouldn't look out of place today. She also wore very high heels!!! We learnt that she got a sewing machine as a wedding present and other very practical things because of course it was just after the war and there was still rationing. She was given a lot of cakes which were distributed around the country and her own wedding cake was 9 foot high!!
The room where they do the Investitures was also smaller than I thought but it gave us an opportunity to sit down to watch a video. Just before entering that room I found the Grand Entrance where an attendant had told me there was a secret loo. So I used the facilities - very posh soap and handwash etc so now I can boast that I have peed in the Palace!! The view over the garden on the first floor was lovely. we asked baout the heating as we could see a couple of small fireplaces and electric fires. the attendant said the Queen likes to have a window open all year round and it is advisable if you ever get invited to dinner there in the winter to put on your thermal underwear under your posh clothes!!
Eventually, we got outside and managed then to get some photos and a sit down and an ice cream.
A we left, we were left in a dilemma - do we go to Victoria or Hyde Park Corner. It seened more sensible to go to Hyde Park Corner then we were on the right line for Covent Garden but the attendants told us Victoria was closer and the sign siad 800metres so we headed off there. I don't know where we wnet wrong but it must have taken about 3o minutes to get to Victoria and I was exhausted so we had to sit for a coffee and cake to recover before we could go to Covent Garden.
In the lift at Covent Garden, I remembered that when I was 19, I stood next to a flasher who was wearing a green suit and carrying a burgundy briefcase!! I remember these girls laugjing and I thought they were laughing at me so I looked down and could then see why they were laughing!! It was difficult to know what to do cos I didn't see how I could do a 'citizen's arrest' so remember following for a short while in the hope I'd see a policeman!!! Of course, I didn't and just went back to shopping. This time there was no such incident!!
We just pootled around looking at the stalls and both mum and I bought necklaces. We decided not to eat there so wandered down to Charing Cross Road and found a Pizza Express. We had a very good waitress who noticed my bad arm and cut up my pizza for me in the kitchen which was good of her. however, why is it always so noisy in Pizza Express?? They seem to have wooden floors, high ceilings and the sound just echoes around!!
Anyway, we left there later than intended so didn't get home till about 930pm so long day but my feet stood up to it - no blisters and not too much ankle swelling either so pleased.
Thursday - I met up with 2 friends and after a long time in Starbucks, we did a little shopping before retiring for lunch!!! That evening, I went out with old work colleagues to a wonderful chinese. Unfortunately, I'd dropped my bag before I left the house so I didn't have my mobile phone and being a thursday meant hubby was out on his morris minor night so we had a babysitter. I'm sure you can guess what happened - poor Woody was sick 4 times and the poor babysitter couldn't get hold of us!!! I felt awful so next day so I bought her a bunch of flowers!!!

Hubby had had to take the week off to look after me and he really needed the rest as well. We decided on the friday that we would go in period clothes for the Goodwood Revival Motor Festival. we went to a wonderful dressing up shop and I was limited as I was going to be using the mobility scooter so in the end just borrrowed a blouse so could go as a Land Army Girl which jsut meant tying a headscarf on and wearing a brown shirt with my green chinos. Hubby chose an RAF costume and when we got home he shaved his beard off and just had a big moustache so really looked the part!!!
We left very early (730am) to get to Chichester but glad we did as queues minimal. Very oddly, the disabled car park was a long way off from the tent (I mean a good 5 minute walk over rough terrain) where you got the mobility scooters from. We asked about this and eventually got a lift in a 50s jeep which was great fun but not sure if other people would have been able to get on the jeep so not well thought out Goodwood!!!
The racing was fantastic!!! As a disabled scooter user we could get up on the ramps and see really well. The Grandstand seats cost about £40 each and we only paid £10 for the scooter and had just as fantastic views especially where the big screen was. Lots of people were dressed up in 50s/60s clothes so it was great to see so many people all dressed up and playing the part!! Food was expensive - £5 for a chicken and avocoda sandwich!!!
We saw all the races and also the displays of 1950s caravans which was hilarious!!
I got a puncture in the first hour so poor hubby had to go all the way back to get me another scooter and then someone pointed out that there was a mobile number on the key fob so we could have phoned for help instead!! Anyway, scooter number 2 was fine for the rest of the day!!
Sunday, we met up with hubby's college friend in Avebury and had a great time there. My blisters were still sore so ended up crawling up a bank as couldn't walk it!!! Had a good sleep in the car for some reason!!
Monday - was Aj's first day at junior school and felt so mean leaving him at the childminders for his first day there.
We arrived at the hospital at 830am and they couldn't find me on the list so had to hang around until the secretary came in who confirmed I was booked in for the afternoon so infact could have had breakfast instead of being nil by mouth since midnight. They did let me have a cup of tea though but still fel;t very cros about this. Then went to get blood test done and there was about 20 patients there already so when I saw someone come out of the room, I immediately just went in and explained I was having an op that day and needed my blood done urgently. The phlebotamist was fine but you can imagine the looks I got from the waiting crowds!!!
We then had about 3 hours to kill so came home instead. We went back at noon and it was obvious that they do not want relatives to be sitting there waiting. The chairs were wooden and sloped so you couldn't just sit there without falling off!!! In the end I asked to be moved to somewhere more comfportable and where I could put my feet up as my ankles swell so quickly. We sat in brand new soft chairs which are obviously never used!!
I went through about 215 to see the registrar and although he was very nice I was pleased that the consultant wanted to do me. The nurse actually got a venflon in my hand first time so was well impressed with her. They sprayed my nose and throat with local anaesthetic which tasted of banana liquer so along with that and the sedation I was in happy place in Tenerife where I was riding camels and seeing bananas growing but my dreams kept being interupted by the consultant who kept telling me he was spraying local anaesthetic on my vocal chords etc and then started shouting at me to give big coughs which totally confused me especially as he used my full name so I knew I was in trouble!!!! I woke up at one part to hear him say my airway was 'critically narrow' which perturbed me.
I then went into the recovery room where I came out of the sedation really quickly and was up to the loo in about 15 mins after the investigation and couldn't go to sleep. I went home an hour after they had started the bronchoscopy and was in the co-op with my mum about 45 minutes later!!! At 430pm I was allowed to start to drink and eat again which was a big relief!!!
Tuesday - my mu and I went to a local outlet village and bought a lovley winter coat for £18 so well pleased plus the shoes for the wedding blessing at half price!! Then was exhausted of course but after finishing off a bottle of wine I then had a second wind and went to see my neighbour for more wine and got home at 1am!!! Still couldn't settle so stayed up till 330am!! Still I felt well the next day and met up with work colleagues for a lovely lunch.
Thursday - I knew it would be along day at chemo as they had had to fit me in as extra. My appointment was at 10m and was seen at 130pm. My father-in-law was also at the hospital for a procedure so managed to catch up with my mother-in-law for coffee and she stayed with me while I had the herceptin and the bone builders. Finished at 430pm which was the time we could pick up my father-in-law so they were able to give me a lift home so that was really kind of them and helped me out a lot.
Today, I had my hair cut and straightened so that the hardresser could get used to my misbehaving hair!!! Then went out for lunch with a friend which was lovely but this is not going to help me lose the weight I gained whilst on holiday though!!!
Felt exhausted this afternoon so had a long sleep whilst hubby and Woody and friend went out to local ruins to play hide and seek etc and collect conkers. The other 2 were at friends so that was a great help.
Tomorrrow, supposed to be crab fishing and looking at bridesmaid shoes but Laura has an abcess on her gum so think will end up seeing emergency dentist instead!!