This last week i was not as energetic as I'd hoped and spent quite a few afternoons asleep.
Monday, my friend came down from oxford to see me and we went out for lunch after she'd done the day's washing up and a neighbour had hoovered around. Unfortunately, it must have caught something as a big plume of smoke came out the bottom so she had to get her own hoover to finish off!! We didn't call out the fire brigade like our neighbour did - we're much more sensible!!!
To suddenly change track, i'm eating a mushroom risotto from the co-op and I've just found 2 peas. Peas are not part of the listed ingredients so now in a quandary whether to eat the rest!! Think I'll have to eat a bit as i'm so hungry. Had 8mg of steroids today so flying high and VERY HUNGRY!!!!
Tuesday was hospice day and i saw the hairdresser and a really wonderful job she did of cutting and straightening my hair which means i can save my vouchers towards some more colour. Well - I want to make the most of it before it falls out again if I'm well enough to go onto another chemo after this one.
I also saw the hospital chaplin to discuss my funeral service except I think I want a double slot booked at the crem so that we can have a less hurried service. It is my special day and i don't want it too feel like a supermarket checkout. We were discussing poems, scripture readings and hymns. Hymns are difficult as the children know different ones to adults. If anybody has ideas for poems, readings, hymns and songs on knows any websites perhaps you could point mein the right direction.
Wednesday was not a good day. I went or radiotherapy for my spine and had to wait on hard chairs for an hour to be seen and then spent the rest of the day feeling as if my spine had been stabbed with a hot red knife so resorted to morphine - my little friend.
I did spend the evening in bed watching Sheffield United play Middlesburgh - Woody fell asleep just before the own goal - how typical!!
Today, I went for chemo etc. I was expecting a very long day but it got off to a good start and saw the consultant on time. he thinks my brain scan will show nothing - well hopefully it will show I do still possess a brain but hopefully an intact one and a skull with no holes in.
The consultant was the one who said i would live for 3 months in Sept 06 so it's difficult to know how the next bit of news is really bad or just a little bad. I'm suffering a lot from swollen ankles which do not always go down overnight. This could be due to further spread in my lymph system and so the drainage is not so good or could be due to the pressure of the tumour on my heart or I could be in mild heart failure. If it is the latter, then I would have to stop the herceptin and hope like other women that my heart would recover sufficiently for me to have further chemo and that the cancer does not go out of control because of stopping herceptin. If my heart does not pick up function then I could not have further chemo after this one which finishes at the end of April so I think I could only live for another couple of months max after that. Really hoping that I can go onto the recycled chemo even if it does mean I go bald again so come on heart please don't let me down now!!
He also thinks I should go 4 weekly to give more time for my blood cells to recover and has also reduced the strength of the dose.
As I was saying a long time back, I saw the doctor on time and spoke to the research nurse and I pointed out it looked as if the herceptin had been crossed off. She went to check at pharmacy and they said they had it prescribed twice so I would get it. So I went into the chemo suite about noon so thought should be finished by 3pm so my friend who had taken me swapped places with another friend. i had the 2 chemos and the bone strengthener and then I could hear the nurses discussing me and where was my herceptin. Expect you can guess - pharmacy had not made the drug up. 45 mins later, pharmacy managed to put a vial or 2 into a bag of saline - about a 5 minute job - and I got my chemo. This then meant that my friend was late picking up her children who had were then late for their swimming lessons.
I have lost the letter from PALS last year so have asked for a new copy as nothing promised has changed and I am going to cchase this up. My poor bum and back and ankles can not stand sitting on those chairs!! Pharmacy are not communicating and decidiing for themselves which drugs I should have - they have not given me the anti-sickness pills but tried to give me more calcium tablets which I refused as I still have about 100!!
Goodish news on the PALS complaint I made to podiatry and their unsuitable chairs. They got back and said the podiatrists agree the chairs are unsuitable and they will get new chairs. I will see if that happens as a friend's husband goes there so I can get him to keep me informed!!
Think we get the news on secondary schools on monday but it maybe later. Cross fingers for the twins.

Just came back from seeing oncologist and she said I'm neutropaenic and anaemic - guessed that as have so many mouth ulcers at present so chemo delayed again till next week so at least shouldn't feel too bad for this weekend. She is going to discuss neutralasta/gscf with other consultant to see if I'm suitable for it!!!!These drugs speed up the white blood cell production. If not whether I should have a lower dose of the chemo next week.
She feels I should have radiotherapy to the cancer on my spine as they have been giving me so much pain. Problem is it will inflame my oesophagus so will have trouble eating again!!!
Discussed this strange head headache which has now settled from my right temple to the top of my head so could be brain secondaries or a new bony one in that area. It is also the side where my glands are all up due to the mouth ulcers. Feeling scared about possibility of brainy secondaries and its implications ie not being able to drive and all its implications on your life. Don't fancy whole brain radiation (wbr) so hopefully either this pain is due to stress or irritated nerve from mouth ulcers.She thought it was better that they looked now for brain secondaries now as if leave it till too late then wbr wouldn't be as successful and also don't want to have a fit whilst driving and kill myself, the children or an innocent bystander.
This news has given me the impetus to get on with my writing as if need brain radiataion wouldn't be able to do anything constructive for 6 weeks or longer or not at all. Very scary thought.
Got home and realised that white side of long line needed flushing and both sides needed new bungs so have just been self administrating!!! Good job I was a nurse!!
Going back to bed now as had early start.
Trying to drink a vanilla fortisip as mouth so painful and it is high in protein which my body id short of - doesn't taste nice though - prefer the chocolate one!!

I had to go back for a review of my toe nail surgery. 3 sides look fine but to me, one side looks as if there is a pocket of pus under one side. The podiatrist looked at it and thought it was OK but would review it in a month. The waiting room was awful - considering that the majority of ots clients are elderly or infirm, you would have thought the chairs would be suitable for them. Wrong!! - OK the chairs look nice - good corporate image but totally unsuitable for anyone with mobility problems. Whilst I was waiting, 2 elderly people had to be helped to standing as the chairs were too low. My upper back was extremely painful that day and I asked if they had any higher chairs and was told no. In the end, I sat at the back so I could rest my back against the wall. because I was driving I was limited to what pain killers I could take and in the end I was in tears. At the moment, one of Woody's school friends and his dad came in and I ended up crying all over him - poor man. i am going to write to the community Trust's Chief Executive and challenge him to come with me and try out these awful seats. i will see if he will meet the challenge!!!
The last week has been quite difficult as Aj was in hospital for 4 days so poor hubby had to stay in with him as it said on the letter it was for 'clear out and review'!! Overall, everybody was very nice but the treatment was haphazard and AJ never got any breakfast so hubby used the cereal he had taken in for him to eat!!! I was glad hubby was always there as I'm not sure what supervision there was for unacompanied children. As the chairs were low again, i laid on Aj's bed and then the staff found me a higher chair to sit in - this seemed miracaulous after all the other hassle.
The house seemed very quiet with only the twins, mum and myself and it was lovely to have the whole bed to myself so i could spread out all my gubbins everywhere as i seemed to spend a lot of time in bed as i felt quite poorly at times and had a temp of 37.5. The hospital are only interested when it reaches 38degrees!!
I've been getting alot of headaches especially over my right temple so i will have to mention that tomorrow. it is my biggest fear having tumours in my brain.
AJ and hubby came home at 830pm on thursday night with even more medicine than I have. Definately need 2 medicine cupboards for his and mine stuff alone!! I'm sure you don't really know what poor AJ has to take but he has to drink this stuff 4 times a day but he is coping well and now takes it all himself without any fuss. We did have to go back to see the doctor today who was pleased to see that AJ was making progress but we have to go back in 2 weeks to see him again. I suppose that will also encourage us all to keep on top of the situation so that it doesn't happen again. The doctor said he felt he had to send them home on thursday as both hubby and AJ were going stir crazy!!! I will get the nurse consultant to speak to the school so he can go to a private toilet and make sure he drinks plenty. It sounds from what Woody says there is a lot of teasing goes on if a boy uses a cubicle so it seems best if there is somewhere private for him to 'go'.
Laura had a friend over for a sleepover friday night. They seemed to have fun anyway.
This weekend, hubby managed to get the new CV boot on the car so the tesco bag of Life has now met its end!!!
Sunday, we went to Milestones in Basingstoke. This is a museum based in a warehouse which is made to look like a Victorian street with shops and displays etc. The children, of course, couldn't wait until the sweet shop opened!! The museum also had displayed toys from the 60s and household equipment from the 1940s onwards. it was a real trip down memory lane. I saw my Nan's old toaster where you had to turn the toast over yourself and her old hoover and my old golliwog and sindy. There was also a twin tub - see my obsession with washing even extends to seeing exhibits!!!1 Also a mangle and washboard which i remember having at our house in london.
We also bought a box of tiddlewinks which has proved a great success apart from the fact the yellow counters were missing so it's been a 3 player game only!!!
This week it's half term. Yesterday, we went shopping but my scooter's battery was nearly flat so the boys had to go off on their own to buy AJ's pressie as a reward for taking all his medicine and doing as he was told in hospital. The children and I kept finding I gave them static shocks if they touched me and when I pressed the lift button, Laura and I could see a blue spark jump from the end of my finger!!! That sounds very Harry Potterish but it was true and also got a bit painful at times. Woody also bought Mica's - World in Cartoon Motion - which he has been playing in a portable cd player and singing along. It has been hilarious listening to him as usually he is a wonderful singer but he sounds so flat with the Cd player that I secretly recorded it on my mobile - that'll amuse me when I'm getting bored at chemo.
Generally, I've been very tired and now have got mouth ulcers so am worried that I might not have enough white blood cells for my chemo tomorrow.
Had a nice surprise yesterday, my friend had written to Monkey World in Dorset and now I have a 'special day' organised for me in March. Should be fun going around in a Golf Buggy all day especially with those hills there.
Really would like to go away - just hubby and me but it causes the children quite a lot of upset and also don't know if I would be considered fit enough to fly to Scotland as that's where I would like to go back to and it costs a lot of money on the train!! Ridiculous the difference in price of flying and going on the train.
Have still been going to the Hospice once a week but was getting hacked off that I never managed to get any of the complementary therapy or the hairdresser so this week I managed to grab the Reiki man and got Reiki which was lovely but difficul to relax properly in a room where everyone was talking. However, I had a very odd experience and you will probably think I am quite mad but I felt that there was someone else in the room but all I could see was a bright white light and someone sending messages to me saying that death isn't something to be afraid of. It felt like it was coming from the Reiki practitioner who died this week that i only really knew from the forums but she had written to me before and always sent me lots of messages of encouragment when i was feeling down or frightened. In some ways, it was reassuring to feel her presence but in others it made me doubt my sanity but I do feel she was there with me.
Have been enjoying long conversations in bed with the children which got us thinking about what we would like in an ideal world - well apart from the miracle cure that is! What we all wanted was to be able to travel via a Portkey or the other type of transportation described in Harry Potter!!! I also want a minute microwave to warm my wheat bags up and a tiny fridge so I could make a cup of hot milk without getting out of bed and a minute teamaker. They would all need to be smaller than what is available now as there is not much space in our bedroom.
Will try to blog tomorrow to let you know if I have chemo and if I have areaction to it after my rash last time.
Thank you to everybody who has been helping me out whether it is physically or by emailing me or sending me messages via the forums. It is really appreciated but it is going to take some time to reply to you all.

I forgot to mention this at my last posting that Laura had Woody and I in fits of laughter of the other night. We were watching the England vs Switzerland game and at half time the rest of the scores came up. Suddenly, Laura said 'i just don't get it. Why are they always saying 'neil' in every game?' After a couple of minutes of probing deeper, we discovered that what she was hearing was 'nil'!! As in England 2 switzerland nil' . Woody and I found that really funny so as each result came up, everytime there was a score with 'nil', we'd say 'Neil'. I think you had to be there to appreciate it!!!
That got me thinking of other things, they'd said as children.
Laura aged 6 - I don't know why people get pissed? After a deep breath, and asking what she meant , she said she told us she couldn't understand why people got their nose, ears etc pierced!!
Woody - about 3 - 'are they going to arrest those men with their handkerchieves?' on watching 2 policemen arresting 2 men - meaning handcuffs
Woody aged 4 - on being asked if this doll was a boy or a girl. He told us it was a girl because she had horns like mummy!!! When we asked to point out where 'mummy's horns' were, he lifted up her top and pointed to the dolls little boobs and siad 'there they are'!!!
Woody aged 8 - telling me in a friend's garden. 'I know what a kachina is'.Whilst we were plannning on how to answer this, he then said and 'I know what sexual intercourse is too!' I had always thought it was a chinese restaurant in the city but after asking again we realised what he meant. When we asked how he knew these words, he said he and his best friend had looked it up in their teacher's dictionary!!
Laura - when asked to write down in pre-school what she wanted to be when she left school. She wrote down 'I want to be bigger' - sensible reply I thought!!
at present, I can't thiink of anything that AJ has said. I will have to add to that later!!

monday - Hubby had the day off as he is working Saturday. I slept in a little bit and then we or rather hubby stripped the bed and he put all the washing in the machine and switched it on. He has now learnt how to operate the washing machine but what is tumbledriable is still beyond him!!!
One of my monday helper friends came and did some housework and we all could hear this 'clunk' in the washing machine.Eventually, hubby went to look and there spinning around was the remote tv controller for the upstairs tv. By this point, it seemed pointless rushing the machine along its cycles quicker as it had already been in there for 30 minutes. As you can guess - the controller had died!!! So now I will have to get out of bed to change channels and i can't use teletext!!!
My other friend came to do the ironing and I went to sleep.
Actually got AJ to Beavers tonight. It was a walk from victoria ciuntry park to hamble junior school. I persuaded hubby to go with him and Woody so off they went with 2 torches between them. Yes - the torches obviously have legs and go walking on this house!! I could not find this school despite looking it up on streetmap. I stopped to ask and swutched my lights off as all these cars were coming towards me and then set off without putting them on!!! It was onlt hubby knocking on the window and shouting at me that I realised I'd been driving for about 5 mins without them on!! Wondering if i#m safe driving now!!
I felt so tired all day that I'd sent hubby out to make an appointment at the GPs for a blood test which he did and got an 8am appointment for the next day.
Tuesday - struggled to get to the doctors and saw the venesector who said she had taken blood out of a line before. She could take it but had no idea that you needed to wash it through with saline and then heparinised saline afterwards. This needs to be done so that the line doesn't clot up. She hunted around but we were both so unsure about the strengths of the solutions, I decided to go home and do it myself. Actually, i find it almost impossible to do it all myself as I couldn't break open the heparin vial and couldn't take the syringe out at the same time as clamping the line so hubby and Woody assisted and they were all amazed by this blood in the syringe and me injecting myself!! Wonder if AJ will tell anyone what he saw and what they would understand by it!!! I even got the red coloured one to work which it hasn't done for 2 weeks. There are 2 lines in one - red and white.
I did manage a quick trip to the co-op but that exhausted me so back to bed again and really stayed there all day until I had to go to parent's evening. I got disturbed at one point by the phone by the deputy head phoning to ask me if he could take Woody out to buy some tokens for a teacher who is leaving. For the last 2 weeks, woody and his friend have been on a 'secret mission' to get money out of the teachers. Apparently, they managed to collect the most money for a long time. I can imagine that scene - they probably know how determined woody is and thought they had better contribute or he would only hassle them later on. Still think working for MI5 or 6 or being an interrogater is going to be Woody's career path. Any criminal being questioned by him would have to speak up or else he would never let it go and as he looks so quiet and innocent, nobody would think he would be capable of double crossing and he can multi-task - using the computer, listening to the telly and our conversation at the same time!!!
Anyway, back to the parents evening. I was looking at Woody when we were talking to his teacher and I thought Woody's glasses looked wonky again. Thought I would mention it later but as we got up to go, his lens fell out!!! So there was Laura, Woody, AJ, hubby and the teacher on their hands and knees looking for a tiny screw. it looked quite surreal!!! Woody actually found it and as we were on the way to AJ's teacher, we spotted the caretaker who said he did have a small enough screwdriver to fix it so i tootled off on my own to AJ's teacher. She asked me if I wanted to go in and I explained the glasses situation - besides the deputy head was not there!!! After a few minutes, everyone appeared. In the end it was me talking to the teacher and hubby and AJ talking to the deputy head. The poor boy looked terrified of this rather corpulent chap!! The deputy was brilliant with AJ and kept giving him lots of praise and how his writing has improved so that was lovely to hear.
We then came came back - double bass and all and with AJ's and Laura's help, made pancakes. Even sitting down it seemed hard work so early to bed. So really, i did do quite a bit this day - doctors, co-op, parents evening and pancake making so perhaps i am living after all!!
Wednesday - woke up at 930 to find AJ had not taken his recorder in as reminded the last night by me to him and hubby so had to do that.
Apart from that, I put the washing out which was hard work as at one end the pulley is on back to front so pulling the line up is doubly difficult!!! Again, another job not attempted by other half despite weeks of asking!!
Spent time writing in photo albums and just watching telly and hey presto!!! The controller now works - obviously made of stern stuff then!!
Tonight, I watched the England match with Woody and then Laura came in at the end and we had a really good laugh about what strange or embarrassing things had happened to me. It was so enjoyable I felt I was living rather than surviving.
Still don't know how i will feel in the morning now i''ve been up a couuple of hours.

Tuesday - I decided we needed to get help for AJ as he is so unhappy and a lot of it is to do with his continuing constipation problem so will ask about the children's psychiatric unit as they had offered him a place 6 months after I was diagnosed so we turned it down. I saw the GP who said he would fax a referral off.
At least now he has a red card which means he can just show this to a teacher and they must allow him to the toilet.
I went to the hospice for the dinner and the craft bit which was enjoyable.
In the evening, we went to the local Beefeater. No delays this time which was quite disappointing really after all the wait and deductions of the bill last time.
Wednesday - my birthday!! Had to get up early to be at radiotherapy for 9am. I had 2 appointments on 2 different machines and it was the poor receptionists 3rd day so she didn't know where I should sit! Anyway, they found me alright and i had to keep still for 15 mins sitting upright whilst they blasted my shoulder blade.
Quick dash home to collect Woody whose glasses had been bent out of recognition with 2 separate collisions. I took him out of school at break and went to the opticians and got him back again to school only 3 mins after the break finished!! As I was just about to drive off, my mobile rang and it was one of those silent calls and then somewone misprouncing your name!! I was just about to ask where this call was from when he introduced himself as the consultant and he wanted to see AJ on friday morning so was rather glad I'd kept my mouth shut. He seemed very nice and said he thought in our circumstances it was probably best to stick to treatment on the ward rather than the harsh regime of the psychiatric unit.
Then off to lunch with friends and work colleagues at the Pasta place. It was lovely and I got a lot of lovely pressies. In the afternoon, I met my sister-in-law for a quick shop and tea and cakes etc. After that I definately needed a sleep. Later on, Hubby's parents came round with more pressies and I opened the pressies from my family as well.
Seems odd and disturbing to think this was probably my last birthday and feel we should have celebrated it in a different way somehow but probably best for the children that it was a 'normal' birthday.
Thursday - up early again as chemo this time. I saw the consultant in the corridor who said my bloods were normal and so I saw the nurse as a matter of correctness really. It was a horrible windy day and I'd phoned my sistewr when i had arrived at the hospital carpark to say don't bother as the driving conditions were appallling but as she had already crossed the Dartford Crossing she continued. In the time it took her to drive 120 miles, I saw the nurse and waited for phamacy to make up 4 lots of drugs for me!!. I was just going into the treatment room when my sister and oldest daughter arrived. They had kindly bough me a big cup of tea ansd chocolate so I was happy. As I now have this long line, it meant the nurses could run in the drugs a bit quicker. It made me feel sick and I went to sleep!!
At the end of the treatment, we came home and I went to bed after opening more pressies and they dusted and hoovered and generally cleared up for my drinks party in the evening. At this point, I felt like cancelling it as I felt like I had flu and felt so sick. I took a steroid and more anti-sickness tablets and went to bed.
When I woke up I felt a little better and Woody did a wondeful job of helping me lay the table and getting glasses and plates etc out and putting things in bowls and in the oven. In the end I had a lovely time and even more pressies!!! Thank you so much for helping to clear up the mess and fill the dishwasher!!!
Friday morning, I got woken up by the phone ringing at 645am and I couldn't get to sleep afterwards. I still felt awful and texted another friend who had volunteered to help tidy up in the morning. She came round and tidied up and put the washing out for me. Then I got dressed and got the fright of my life. My whole left arm, all my chest and back was bright red and there was green gunge coming out of my long line. She took me to hospitaal with AJ for his appointmnet as I wasn't sure whether I would be admitted or not. We saw the lovely consultant and male irish nurse who was brilliant with AJ. He will go into hospital on the 11th February and Dad will have to stay because of my low blood counts but it sounds as if he can get out and about and won't be in hospital all the time. Will have to get mum to come down to stay as don't think I can manage a week on my own.
Then we went off to see an oncologist in clinic. She thought it was an allergic reaction between the chemo and the radiotherapy. Once the dressing had been removed, no more pus was coming out of my long line but she still gave me antibiotics qhich I will take if I feel ill but otherwise I won't as I've had so many recently. She also took a blood test so AJ and I had to wait an hour for the results so spent the time in burger King at the hospial. My blood tests were OK so came home by taxi - £12 - what an expense!!! Spent the afternoon in bed eventually.
Saturday, I had to be up reasonably early as my friend was coming down from Derbyshire to see me and her elderly uncle. it was wonderful to see her and she gave me some photos to keep. Then one of my friends came round as she had been unable to make any of the other celebrations so more pressies!!
Went back to bed and went to bed early as felt so rough and cold. Hope I feel better tomorrow. Feel very guilty as I'd promised Woody I would do some cooking with him but fdelt too poorly and the kitchen is freezing so we just snuggled in bed instead.
I feel so rough at the moment - I thought I would be happy to be alive and to be able to sit with the children even if I didn't have much energy to do things with them. At the moment, I feel such a nuisance with everyone having to run after me as I don't have the energy to do anything and keep letting the children down by not doing things with them when I said I would and just sleeping so much. This feels like an existence rather than a life but then have rather overdone it this week so that's probably why I feel so low at the moment as when I reread what i've done, I've been busy and done things but it has been such an effort. Hope I cheer up soon as I can't be good company at the present time.