Home Again
Having just reread this and noticed how many typos there were - can someone please email me in future and get me to re-edit it. It was really bad.
Got home about 4ish on friday from our holiday and I went to bed again for a while and then got the kids and hubby to help unpack a bit.
Spent saturday and sunday being quiet indoors.
Bank Holiday Monday - it occurred to me that it was now exactly a year ago that we went to the special Sail4Cancer day at Redhill. That was such a brilliant day and the weather was definately better that day than today.
We met my sister, her hubby and their 2 youngest at Hollycombe Steam Museum/Fair. It was a good day and I didn't rely on my stick too much. I think mum took it most of the time so I could go on the rides. Sis and I went on a steam powered swing boat and just giggled for ages - she had control of the rope and she enjoyed the power!!! All these hangups and insecurities from our childhood - me always the bossy one and she doing as she was told. Now seems it is the other way round as I'm always having to ask for help which I find hard. We did some of the other rides and tried to get some more photos of us as a family this time instead of just the children. It was a good fun day and due to a grant from the Heritage Lottery Fund they now have a decent teashop where you don't spend 45 minutes queuing for a cup of tea!!
On the way back, we stopped at MacDonalds as we felt too lazy to cook for the children and they all needed baths as they looked like chimney sweeps from the coal and soot powered engines.
Tuesday - the children and I packed and we went off to Paradise Park in Newhaven which was good fun. Annoyingly, the Brewers Fayre was still there and so was a Premier Inn. I don't know what I did wrong the other night but I couldn't find any Premier Inns on the website near Newhaven or Brighton but on our travels we found 5!!! The children liked feeding the fish and Laura is always interested in looking at the gemstones and they all like looking at the dinosaurs. I used my scooter so didn't get too tired this time. AJ is totally scared of wasps to the extent he wouldn't eat anything outside at all. We lsot Laura this time though as she went to the toilet outside of the attraction and in the garden centre and so couldn't get back in again. Eventually, I had to get a staff memebr to find her. She was very good and calm about it and logically retraced her steps and got back in just as the staff member was looking for her.
After Paradise Park, we drove into Eastbourne. Laura had forgotten to bring her trainers so needed to buy a cheap pair for tomorrow's outing to Drusillas Zoo Park. Eastbourne had a difficult to navigate one way system but I got there in the end and we got the trainers in the first shop we tried which was a relief.
After that, we drove to the seafront and parked right near to an amusement arcade type place which wasted time and money but made them happy. Then off to find somewhere to eat. I didn't intend to end up at a Haagain but we did. The pea and ham soup was completely different to the one near Broadstairs so not sure whether that means they buy in different types or they do actually cook their own soup!! The initial impression of this Harvester was Ok and we'd got there in time for the Early Bird special prices but then they cooked Laura the wrong dinner so she had to wait 15 mins for her steak and then we waited an hour for puddings so after complaining we got the puddings free.
Then we passed 4 Premier Inns on the way to the Travelodge which was annoying as the children much prefer the Premier Inns like I do. After staying at this one last year, the manager told us that it was being upgraded so I thought it would be OK. I'd even booked though central booking and asked about the size of the 4th bed and was told they all had 4 full sixed beds. Instead, we found it was still grotty and and didn't have a full size 4th bed. the 4th bed was more the size of a cot mattress so got really angry with the girl at reception as felt I'd been lied to twice as had asked when I booked about this and was told all beds adult size now. She wasn't terribly helpful s I couldn't give the name of the person I'd spoken to at central office but I'm sure he didn't give me his name anyway. The place was full so they couldn't move us as she eventually admitted they did have some rooms with full sixed beds in nor could they supply extra pillows as they'd run out so poor Woody had an extra duvet for his feet to rest on and I had to use a duvet for a pillow as well. In the morning, I got a 50% discount but I will take it further as there is nothing on the brochure or the website that says the 4th bed is so small. The bochure actually mentions the age 15 so that would be an interesting scenario!!!
After breakfast at the Little Chef which they enjoyed, we set off for Drusillas and got stuck in a massive queue as there had been a crash just up the road from Drusillas. I again took my scooter - it really has been such a good buy and given me so much freedom to go out on my own with the children and be able to keep going all day and it is also useful to carry lunch on!!
The children enjoyed Drusillas and liked doing the zoo-olympics where you find out if you can run as fast as a certain animal or make as much noise as something else. We all weighed as much as warthogs which seemed strange as there is 5 stone diffference between me and Woody!!! With all my refunds from the previous day, it paid for a proper cooked lunch for all of us. I even managed half a chicken curry even if it did take me ages.
Thursday - I had to get to chemo early so they could do my blood test. I saw the same registrar that I saw last week and got him to recheck which weight and height they had used last week and found they had used a weight which was 16kg heavier and a height of 3 cm more and so this resulted in a 9% overdose. Good job this was the mini weekly dose and not a big 3 weekly dose. So glad I missed out last week's dose as I was away as I was then well enough to enjoy these last 3 days. I made sure I got proper anti sickness tablets this week so hope not to feel as rough as I did last time now I've got the correct dose and the right anti-sickness tablets. Tonight, I can't sleep as I have to have a huge dose of steroids to stop any allergic reaction so the side effects of them is that it stops me from sleeping which is frustrating.
Now I need to organise myself for school next week. I need to get AJ trainers for school and remember Laura has a hair appointment next week and a dental appoinntment. Poor girl- having a molar out the day before she starts secondary school.
Pete's been busy whilst we've been away. He says he hasn't stopped and I'm sure he has been but all I can see is he has painted a shelf!!!
Didn't get back from chemo till 7pm so rather tired then but know the steroids will kick in and I will be awake. I need to be as have friends round tonight. Beginning to think my hair will start to fall out soon so have made an appointment to see the wig lady and then get hospice hairdresser to trim it up better. Also must get some hats - several women had some really good ones on this week.
Laura out on a sleepover so will see her at some point tomorrow.
Desparately need new trousers = only have 1 pair of jeans and 1 pair three quarter lengths that don't fall down. Getting really desparate and can't face Primark. Got a good bargain in Tescos plus some tops as they all look so big now but obviously don't want to spend too much just for one season so may go back there or the M and S outlet or Sainsburys as can't believe the prices in usual Marks. So have got some size 18 Per Una skirts to give away and need size 14 long trousers and a skirt and then empty my wardrobe full of clothes that just fall off me!!!
Let you know how I am on this new lower dose.

Coming Out of The Smog
Well I wrote in my diary that I woke up feeling 'normal' - not sure I know what normal is anymore though!!
The weather again looked changeable so packed a lunch and went off to a converted nature reserve called Fowlmead which is infact the flattened slag heap of Betteshangar Colliery. It looked a lot better than when I was ast here over 20 years ago. It has a cycling track round the outside and they have races there plus bits off the side where they have made BMX/mountain bike courses. The twins were in heaven - we had to hire bikes but Laura complained about her ard saddle. Think she has a gel saddle at home so spoilt but has been complaining ever since of a sore coccyx!!! They were so funny - Woody was determined and slow but got up the hills quite well and then as he gained confidence got quicker and braver. Laura just screamed with fear/pleasure all the time but did really well and didn't complain of a sore hip so obviously cycling doesn't put the same stress on her hip as walking does. AJ still will not cycle on his own so Pete had to wait for a tag-a-long to be free so they could go out. They all had such fun and as for me, as it was a smooth racing track, once I'd got up the hill I could go on full power of 4mph or it might be 8mph downhill round the track. it was brilliant!! Noy many people around so I could zoom around admiring the countryside and looking at the wildlife. It gave me a taste of freedom!! My world has shrunk so much that I get overexcited sitting on a mobility scooter at 4mph looking at wildlife!!! Not normal for a woman of 46 but still I was out in the fresh air which I love so much and watching different birds and butterflies. Pete eventually had to come out to look for me as I hadn't returned - I hadn't put my watch on as I thought we were going to the beach so got a bit carried away how far I'd travelled!!!
We then went onto St Margaret's at Cliff via a hotel where we'd stayed on our very first and miserable night of our honeymoon. (Pete got flu on our wedding day and when I reached him at the top of the aisle, he was all cold and clammy and I'd thought he'd had a change of heart!!! He felt so ill, he never ate anything at our wedding reception and went to bed as soon as we arrived at the hotel, leaving me with my tiara and confetti, asking for paracetamol!!!!).
It was great down on the stony beach. It was somewhere we used to go a lot when I lived down that way as a child/teenager. I love collecting stones and found some lovely heart shaped ones which I will put in the memory boxes and some unusual black and white ones. Pete found fossilised coral which is usual for him to find something fossilised when we are out. We had an icecream but I couldn't use the toilet as there was no lights in the cubicles and I just can't squat and hope!!
We came back as I desparately needed a rest and Pete took them swimming. As my tummy was sore, I took some oromorph but just rested and didn't really sleep. Suddenly, there was pandemonium at the door and Pete was doubled up in agony. Somehow, he had pulled a muscle or trapped anerve whilst swimming just normally in the pool and was in agony. I was dopey from the oromorph and trying to work out which pain killers would be best as I felt we needed at least 1 parent who was in the 'real' world so didn't want to give him anything that would make him sleepy but at the same time, he was in such agony and couldn't straighten himself up at all. Heat pads were got out and the children just got on with drying themselves etc. Laura cooked herself an ommelette which was the first one she'd done from scratch on her own so she was pleased and I just opened tins and cooked toast for the others. It was only about 2 hours later, I realised I'd not eaten so had to put that right -I wasn't hungry but just can't afford to lose more weight so was drinking fortisip and eating forticreme mousse to try to get some calories in and then tapioca!! Such a high fat diet - sure that's why my tummy was really painful that night again as well. It's a fine balancing act to eat pureed food when you're not hungry. My instinct is still to go for pureed fruit and vegetable soups but the dieticians are saying I need lots of protein as I've lost so much muscle and my blood protein levels are low so need fat and protein.
Spent the evening watching Airplane which the kids absolutely loved and laughed non-stop and Pete just slid under the table with the painkillers and lager. Will have to see who drives home tomorrow now.
Friday - Didn't sleep well - again this tummy ache. Will have to ask why it's only at night that I tend to feel it.
Spent morning packing etc . It was raining so seemed a good time to leave but sad as well. The journey home was Ok considering it was a bank holiday friday. The longest queue was about 2 miles from home which was rather annoying.
All the children helped unpack but it seemed so overwhelming. My friend had done some washing that I'd left behind so it was all flapping outside drying off.
They all had a takeaway tonight. Pete persuaded me to try a chip but it was useless and I ended up regurgitating and going to bed without eating anything.
Saturday - took Woody to football training and then went to Tescos. I really didn't man to spend so long in there but spent ages looking and buying clothes in size 14 all from a different brand of mobility scooter with a basket on front. I think they are designed for 1 person's shopping only as very difficult to fit in all the shopping I wanted. The staff were very kind for a change and helped get a bigger shopping trolley and pushed it back to the car for me.
Then a quick dash to pick Woody up from football and home. After thus I was exhausted and spnt 2 hours asleep. Then back into town as having trouble with the PS2 or the games. Managed to park closeby - thank goodness for my blue badge and scooter. Pete had divided it up into smaller pieces so took Woody and I a while to put it all back together again.
Pete later took Laura out to buy a light etc for her bedroom and sort out shelving for our room. He's now put the flatscreen tv on the wall and connected the freview so at least can watch telly in bed again. Absolutely exhausted but still couldn't get to sleep - so much tummy ache and diatrhoea. Think I over ate tonight as had huge bowl of soup plus a steamed sponge treacle pudding so think I was just over full. Even after that eased, I still didn't sleep that well though - mind overactive. Just getting so fed up with soup and porridge and tapioca and the occasional crisp!! Also, still so tired that wondering again how I will cope with weekly taxol. Feeling very low about this.
Sunday - woke up 8ish but still so tired. Spent morning trying to get children to tidy their rooms and I was trying to unpack our stuff so that Pete could get the bags back into the loft to give us more room. Got there in the end though and this afternoo went to a DIY store for things for the shelves and I bought some more sticker/scrap things for my photoalbum. Now have a shelf with lighting underneath but penguins all in loft!! Not having an early night again am I and ell asleep on the settee earlier.
Got 3 busy days now so may go back up o 4 mg dex so I can keep going.
Went upstairs and found the aerial lead cabletied back to the knob of the cupboard - don't think that will stay as it is!!!

Holiday Bliss and Chemo Tiredness
Managed to get up at 7am although we weren't ready to leave till 9am. Where does that time go when all the bags are packed and it's only the car needing to be packed???!!
Good journey down there and met friend in caravan with her boys playing the electronic version of monoploy!!! £25 million to put on a credit card - they loved it though not sure we play by the rules!!!
We went to tescos - the local one very small and quiet considering it was a saturday afternoon. Got what we needed and I'd bought my supply of frozen soup with me!!! We then went to a place where you get frozen, organic indian food. We ordered some for tonight and infact the children all liked it which was a first (well Laura has eaten curries before and AJ seemsto like curry flavoured crisps). I ate soup again!!! Still felt very breathless all day and had to use my nebuliser again. I also painted my nails black as it's supposed to stop your nails falling off when on taxol. They didn't fall off last time - I just had stripey nails and it looked like an odd nailbar paintjob. Hope the same happens this time or less.It must be so uncomfortable without nails. Can already feel some tingling in my finger tips. Have serious thoughts that they did give me a dose based on my 23kg and 3cm taller frame as I feel so tired and ill. Terrible stomach pains as well - good job I bought that heated gel pad thing as keeps hot longer than a wheat bag.
The children just spent time in the outpool having great fun.
I even managed to make some thank you cards and do a bit to Eeyore's cross stitch.
Sunday - Still felt so rough I stayed in all morning and everyone else went down the pool again. In the afternoon, we did venture into Ramsgate to find the tourist board. I was so tired I even used the disablity scooter around tescos - I borrowed theirs. That was an experience as it went so slowly and seemed to have to push and pull different levers to get it to work - a bit overcomplicated for me.
Still got really bad stomach pains which is not helping my mood which is very low. I was hoping that I'd feel better by now otherwise I'll have no good days between bad days and will have to rethink my plans.
Monday - starting to feel a little more human and as looked as if would be damp day, we went to Dicken's world in Chatham. It was good fun even if we got a bit wet on the boat ride but the holograms were good.
We did a bit of shopping at the outlet centre there and bought some size 14 jeans from M and S. It felt so lovely to wear clothes that actually fit instead of having to rely that a belt will hold them up and they get all puckered at the front. Also, went to Clarks to buy shoes for school. The electronic machine and the handheld machine was different each time for all 3 children so just gave up and didn;t bother waiting to see an assistant and just chose our own.
We then popped in to see my Uncle. I'm seeing him on wednesday on my own but we thought the children would enjoy a visit there which they did. He'd had trouble with mice in the house and so had had to put traps down and was doing funny faces where the mice appeared to died happy as their last meal was tuna!!! For some reason, his mice did not like chocolate!!!
We were going to eat at a Harvester we'd passed on the way there but as we drew in, there was a big notice saying 'opening 1st Sept' no good for us then. We just gave up and got takeaway pizza and I had a sort of rissotto mushroom thingy which was a bit of a struggle. Discovered the extra fine Creme Caramels from Tescos now so that makes a change instead of tapioca!!!
Took the boys to the club tonight but no luck on the bingo. Laura decided to stay in with her Dad and watch a dvd. Got back about 9pm and so exhausted I couldn't help with bedtime at all. Feeling quite useless at present not being helped by the fact all the children are going to Pete for cuddles and almost ignoring me!!! Went to bed at 9pm and woke up with a shock at 10pm as had fallen asleep with a drink in my hands and must have moved in my sleep as dropped the drink all down my front!!!
Tuesday - The children woke us up at 9am but still took us ages to get going despite 4mg dexamethasone. I just stayed in the caravan all day, finished Eeyore and did some memory books and made cards and slept. This is not giving me extra quality to my life nor improving my swallowing and now the lumpy area under my arm looks very odd. Pete took the children to St Margarets Bay or at Cliffe - I can't remember now. Apparently, they had a good time woith the stones and big waves etc. When they came back, the children were off in the pool again. Problem is, they always need an adult there so poor Pete always ends up down there!!
In the evening, we went to the club and ate there and played children's bingo and then i came home and they styaed on for about an hour. Actually, read to AJ tonight and spent some time alone with the children as felt I wasn't involved at all in their lives at present.
Still very troubled by stomach aches all the time but worse at night. Sometimes, it seems to give me diarrhoea but not always. It's horrible anyway.
Wed - my uncle came over and Pete took the children down to the local nature reserve so I had time on my own to discuss how I am and my cremataion plans, and what readings etc I want. As he is a Layreader and takes funeral services it was very useful to discuss with him what I wanted and to get the timings right etc. It must be the first time in about 20 years that I've spent anytime alone with him so it was a very special visit to me.
He left about noon and then mum came over at about the same time as Pete and children came back for lunch. Mum and I went off shopping - what a lot of traffic and not many shops. Had forgotten how expensive full price Mand S is when you're used to looking at the outlet. Bought an H and M top and mum bought me a watch. Mum brought over some tops from one of her friends so have some tops now that actually fit.
Pete and children been in the pool all afternoon and they all had skin rashes from the floats.
Decided to go out to eat with mum as easier and all too tired to cook and wash up etc.
Will write second part later.

Rough Day - Wonderful Children
I was not expecting to feel so rough after a third of a dose of taxol. I woke up after a good night's sleep buy could hardly breathe so the twins had to get the nebuliser ready for me before I could even contemplaate getting out of bed. This helped enormously. I then realised that I had very few nebules left so had to phone the GP and they were very good at getting a prescription done immediately for me. I also phoned the chemo helpline as had an allergic redface like I used to get on taxotere and felt so sick and then would have diarhoea so then had no idea if managing to keep any of the medication down. This is the worst I've ever felt on chemo.
Life with a family especially when going away tomorrow has to go on. So, the washing went on and the twins put the washing out for me and did the ironing. Inbetween times, they were running around with the sick bowl and tissues and heating up my heat pad for my tummy. They were so good that I was pleased when the second hand but very cheap PS2 arrived - feel a bit guilty buying such an old machine but then they are still able to get newish games for it but reluctant to buy a wii yet. Busy day for parcels - some mugs arrived for hubby, the case of wine appeared and Laura's mattress. so good job we didn't go anywhere!!
The registrar that I spoke to today suggested upping the dexmethasone to 4mg for next few days to help with my sickness and breathing so this is why I'm up at 330am typng my blog. Have got hungry so had a forticreme mousse thing and also managed a fortisip earlier plus some diorylyte which made me feel better. Hubby had gone out on a delivery just when i needed him home. I thought that was the idea of him working in the office so he was there when I needed him. Anyway, we survived and I had a good sleep this afternoon and when I woke up I then had to get Pete to get me more supplies of pills and stuff for my long line!!
I sat on the bed and supervised the packing but I seem to be taking a whole load of medicines and stuff for my long line which sems to be taking up a lot of room plus my oxygen and nebuliser. Looks like we're moving away for a month.
Hubby treated them all to fish and chips this evening.
I've had a bath ot rather hubby gave me a bath as just too weak to manage on own. Still not heard back from the finacial assessment team to see how much this care package will cost me. I saw the man on 6th august and I need this care to start now as too weak to bath by myself now and need the domestic help as well. Have to chase that up when we get back.
Had a strange letter from the mortgage company that talked about the data protection act but basically admitting that they have lost our original mortgage application and there is nothing they can do about it. This is because I knew I ticked the box for life insurance and had assumed i was paying for it when I wasn't but had had no letter from the bank telling me my life wasn't insured. Very conveniently lost don't you think???!!! I've sent it all of to my financial advisor and she will take it to the ombudsman as I haven't the energy to fight this but at the same time don't want hubby to lose his lump sum to paying off a mortgage that we thought was covered. Life is not straight forward is it.
Now 4 days off the morphine tablets so pleased as didn't really have too many problems coming off it.
The registrar yesterday suggested I shouldn't be driving but I'm not sure why as I'm not taking any tablets that effect my responses unless he just meant that I was too ill to drive now. I'm Ok locally but would definately think twice before going 120 miles to my sister again. Got one more trip booked for after the bank holiday weekend so should be OK for that as only about 60 miles and staying over in travel lodge to break journey up.
Forgot to say when I asked to see the result of my xrays from last week, the reg could see them on the screen but were not reported on but looks as if now got new secondaries in lumbar spine and in coccyx area. The coccyx area is one I'm aware of as feeling that I'm sitting on a lump. Will have to wait for 2 weeks to find out the proper result and if need anything like rads to it and the lump under my right arm is approx 4cm square now so have got lots of things to measure against to see if taxol working - my breathing, liver function and lump so may not get another scan for 10 weeks. The reg thought if taxol seemed to be working then may have up to 18 weeks treatment which was a bit of a surprise as that makes the last dose christmas day!! Just have to see how this goes and if it only knocks me out for 24 hours and is working then it will be worth it but if have too many side effects and not working then may have to give up and let nature take its course. But not yet as my memory stuff isn't complete, nor my life story nor is the cross stitch, nor the than you cards - have too many balls in the air so must knuckle own and get something finished!!!
I've actually managed 3 months off chemo this time which has been the longest break I've had since mar 06 to sept 06 so quite pleased.
Getting tired now- hurray!!

Oh dear - I think I've worried a lot of you by my last post. I don't honestly know where I stand to how long I live for. My pessimistic oncologist thinks it should be quite a few months, if not longer. The registrar seems more pessimistic. I just don't know. I do know I feel quite unwell and weak and the the swallowing issue is getting me down. I know my cancer has always responded well in the past to chemos but there is this nagging doubt in my mind that my cancer will not respond this time and it is that idea that scares me and makes me feel I so urgently need to get my affairs in order.
Everybody is telling me to be more optimistic and to look further forward but it is difficult when I feel so ill and tired and can fall asleep at anytime and also having lost so much weight and yet look well as my colour is OK and my face is flushed from the steroids.
We had a very long wait at the oncology clinic today. I had an 1130am appt and saw the doctor about 1pm and didn't go in for the taxol till about 4pm and finished at just after 6pm. As my friend had to leave, the hospital arranged for me to get a taxi home which was lovely. Apparently, I'm not really entitiled to it but they felt sorry for me as I slept all the way through the 2 hours of treatment and had had such a long wait!!
Pharmacy cocked up again by giving me metoclopramide which is the antisicknesstablet I'm sensitive to and makes me hallucinate but had huge dose of dexamethasone but still feel sick. Have got a supply of alternative antisickness medicine so had that and managed to eat a little tonight.
Hope I feel better tomorrow and can get so energy together.
No plans but Laura's mattress arrives tomorrow so hope then hubby can get on with doing our shelves so bedroom is completed.

Updated dying wishes
I've reviewed some of my wishes so this is the current ones - read or ignore but am looking for a couple of people who could read a scripture passage, a poem and a story. Please can someone volunteer!!!!
Final wishes and Cremation Service
1. I want to die in the Countess Mountbattern Hospice, West End in a side Room
2. I want the room to be made homely with flowers and helium balloons and my ipod system playing through the speakers.
3. My V pillow and memory foam pillow make me happy and if I seem to have a pain then use my wheat bags.
4. I would prefer to be in my own pjs or nighties
5. If I have hair please keep it clean and tidy
6. Please make sure my skin, lips and mouth are moisturised and my finger and toe nails are OK.
7. I want people with me and of course it will depend what happens but if my friends/family want to come and say goodbye that this is allowed
8. I want to receive a final blessing from a chaplain
9. I like to be massaged and aromatherapy and reiki and generally to be touched apart from my head.
10. Shave my legs if appropriate
11. I believe in euthanasia but know it is illegal but please do not try to extend my life - trying to get a Living Will together at present
12. Please let others know what is happening by cascading eg groups of family, friends and the bcpals forum and BCC forum what is happening – see email cascade sheet
Chapel of Rest
1. Please ensure my wedding ring, eternity ring etc is off before the crematorium service and keep safe
2. I would like to be dressed in my renewal of wedding vows dress ( or what Hubby thinks suits me best plus a necklace, earrings and bracelet)and to use the same jewellery but please remove before the crematorium service.
3. I have no objections to anybody visiting me in the chapel of rest but please don’t force anybody. Some children may want to others won’t – do what is best for each person/child
4. The undertaker is Forbes Denehhy, Funeral Directors, 80 St Mary’s Street , Southampton Hants SO14 1NZ to act as funeral directors.
5. I would like a cardboard coffin.
6. Ask children if they want to put any drawings – dragonflies, penguins, peacocks - toys , prayers or special messages in coffin - make sure they understand it will be cremated with me and that someone else will put it into the coffin
7. Main coffin spray is from Jackie Hampton, Florist, Mayfield,Hole Lane, Curdridge Southampon Hants, SO32 2BG. Tel 01489 784225 . The flowers can be sent to the undertakers.
9. If ordering flowers then please could you order baskets, or posies as then they can be sent off to the hospice or hospital after the crematorium service. Again, send them to the funeral director. Jackie Hampton’s arrangements cost about £16 - £18 or else buy bunches of flowers

Crematorium Service
1. Please wear colours you like and not wear black unless you always do,cream and yellow but also like pink.

2. Double slot to be booked so not rushed in and out rather than it will be a long service!!!
3. As they are so expensive, it would be better for groups of family and friends to club together and just buy sprays/baskets which can then be sent onto somewhere else or just send a bunch of flowers and donate other monies via the undertaker to

** Countess Mountbatten Hospice, West End – general fund for nurses, day care and care of patients via the undertakers
** Wessex Cancer Trust
4. It would be lovely if everyone could just attach a little note on the flowers or in a book so that everyone else can read what they think of me.
5. Think Lady Hamilton is going to do 1 scripture reading
6. Damsels and Dragonflies – need a reader
7. Emma’s Poem – need reader
8. Reflective music – classical

9. Brief outline of life - chaplain

10. - Tributes - need some off family and friends please. Chaplain will read unless you want to read it yourself

11 Scripture reading - need volunteer
12. Prayers – see if any children want to write a few lines for chaplain to read out
13. I want it to be a celebration of my life and achievements and I want you to have a laugh and you can say all the things that I did that annoyed you or amused me.
14. Please don’t feel guilty if you feel you can’t cope with my crematorium service and think about if you want to see it by video done by the crematorium
Afterwards
As I assume people will be travelling a distance, please can we book Stoneham Inn near the Crem and have a £6 per head buffet menu rather than sandwich one - order about 50 – 60
Scattering of Ashes
Somewhere in the countryside/cornwall/kent
See if we can get a plaque at local church

Not well enough for taxol
Had a mixed week after tuesday. Took the kids to see Kung Fu Panda and slept all the way through. Never slept the whole way through before!!!
Thursday - went with my friend who was lead interior design and decorator to get some mopre things for my room before seeing the oncologist. Very disappointed that my liver fuction tests and bilirubin levels are still too high to start taxol. Getting very scared that they won't drop enough for me to ever start. I think he said my liver got very inflammed even though the tumour is small that blocked the common bile duct so I suppose that is why it is taking time to get back to normal. Just very scared that it won't drop enough for me to start chemo and that will be that.
After that we had lunch in the hospital and had xrays done and then went carpet shopping. We managed to get a carpet for Laura's room and went to the co-op so we acieved a lot in 1 day = thanks my friend.
My swallowing is awful - as bad as it was in June so very disappointing about that and just hope the taxol will shrink that tumour as well as the liver one. Beginning to feel that I'm very much at the the beginning of the end now and still not completely organised on the memory book fronts. I think other things are more or less organised but b]need to get some positive vibes going as could get 10 -18 weeks of taxol and who knows maybe able to persuade him to retry one of the other ones I've had before so mustn't give up hope. It's just so depressing being unable to eat anything other than soup or very liquid purees.
Since then, hubby has built bed for Laura and laid carpet so it looks so much better and ordered wardrobe for her. Need to get underbed storage units now and shelves in my bedroom and telly up on wall so it can become my sanctuary again. Poor hubby had his comeuppance about what he leaves on the floor - he managed to jump onto an upturned plug so has been limping about for the last 3 days.
Off to sisters to won't be on line probably till tuesday now.
Kate

Trying to get Back to Normality
On saturday, I felt OK so took Woody to football training. he didn't make the team but he doesn't seem to mind. I don't mind as he gets the training for free and you only pay if you are picked for the matches!!! I just feel so sorry for him as I know he tries hard but he has never had the practice as a younger child so is behind with his skills. It makes me proud that he is happy to continue with going tot raining even though he has not been picked for the team.
On the way back, I went into Tescos so must have felt better!! Haave no idea when last went there but needed some bits and pieces abd also their clubcard points. I hate buying from these big shops which are monopolyising the market but it is cheaper and the club points are the most useful out of the other shops. I did most of the shopping on own and got the girls to unpack and pack the shopping and take it to the car. I then spent the afternoon in bed catching up with my letters. I couldn't face coming downstairs whilst the others ate pizza so hid upstairs. Pete's brother was here so they could start to move the radiator in Laura's room. I think he's got the decorating bug!!
Sunday - I took the children over to their grandparents and we had a lovely sunday dinner which exhausted me so spent the next couple of hours asleep.
The radiator moving did not go well but there again when did anything go right that the previous owner had touched!!! Poor Laura spent the night on a mattress on bare chipboard.
Monday - I woke up at 1030am so was rather shocked and it took ages to come round. Luckily, one of my friends came to help so she could tidy up from the night before.
Laura had been complaining of toothache for the last couple of weeks so was a bit perplexed why nobody had made her appointment until I did when I came home. It was not good news as her last baby molar is rotten and needs taking out as there is no point in having it filled hen it is going to fall out soon. Poor girl is very worried about it and we can only do it the day before she restarts school. Thought we'd have a MacDonalds before taking Laura to a friend's house. They have 3 dogs of which 2 have been in Crufts and won prizes, rabbits, guinea pigs and a snake.
The boys played happily whilst I still did some more of my letter writing.
In the evening, pete and brother spent about 3 hours trying to finish the radiator off but the system wouldn't refill so another night without hot water. Think we might need a professional to finish this off now as they were working till 10pm and the children were all falling asleep. Any recomendations if from this area please?
I feel so much better now and not having so many hot, sweaty turns which is a relief but the yellowness seems the same to me. Really hope my liver function tests are back to normal and can start taxol this week as so scared it won't work or make me feel too ill to enjoy the holidays.
Today, I went to the hospice and had reiki and saw the hospice nurse but the hairdresser wasn't there and missed out on reflexology as well and then this afternoon they were making flags and so decided to come home as have better things to do!! Firstly, I'm hemming the lounge curtains - yes they have been there about 10 yrs but have never finished them off so will do that and then get them dry cleaned and rehung properly so the lounge doesn't look such a mess.

New Bedroom and Coming Home
I was discharged on monday 28th and did feel a lot better out of hospital than in it. As it is school holidays and I needed to rest, I went to stay with my inlaws. It was absolutely blissful. Just quiet adults, my own bedroom and not being woken up by workmen at 530am. Also so lovely to be waited on and having my food pureed etc and having a quiet and peaceful time. I felt so lucky that they were able to look after me and mum and I'm so grateful to them for all their care to me.
Tuesday, I went to see a different solicitor. She was so much more approachable and wrote down in my will what we wanted rather than what that bumptious man we saw earlier wanted to do. She will send us the official will but also a plain english letter version which is also a great help.
I went shopping with mum to buy some more clothes as now down to size 14 and everything falling off!!!
I really look like a 'cancer patient' now. All stick thin arms and legs and big tummy. Once I start the taxol, I'll go bald just to complete the look!!!
New Bedroom
Wednesday was the unveiling of my new bedroom. Laura had put a ribbon across the door so I could have a special opening ceremony.
There was my mum, my in-laws, and the 2 main decorators (interior designers), and my children and 2 other children plus another friend who helped decorate. We had sparkling wine and taosted the bedroom. I was totally overcome. It is so beautiful - all duck egg blue and cream with cream curtains. It really is my sanctuary. They gave me a card from all the people that had helped. I don't even know who some of these people are!!! Plus some money to buy a new chest of drawers. I can't believe the genorousity of people. It is just so kind.
After that it got a bit hectic with the hospice nurse and a friend coming over but we made the most of the bedroom
I spent that night back with my inlaws and then
Chemo or Not
Hubby picked me up the next morning and we went off to the hospital. Unfortunately, my bilirubin levels were 60 so double normal but a great improvement on last weeks 320. I had the herceptin and bone strengthner instead. I also saw the dietician as I'd lost another 2kg in a week so will start on a new hi calorie supplement now.
The onc said the new tumour is small but just grew in the place to cause to cause the most damage ie right in the centre of my common bile duct and if it had been a few cms either way, it would not have caused me any problems. He was quite optimistic and was talking about me living months but obviously will depend on if can tolerate the taxol chemo and if it works. Even then he was optimistic that I could live for quite a while so felt happier and that I can now make plans again.
Went back to inlaws for dinner and then home to try out my new bedroom.
Friday -
I don't know if it was the prawns I ate for my tea or what it was but last night ended up being really ill from 2am till 4pm with diarhhoea, severe pain and sleepiness. I felt so ill and all the family were so worried about me but felt they could check up on me more frequently than the hospital would. I slept solidly from 11am to 4pm and then felt quite OK so had a bath and went down to the fish shop and eaten tea.
Poor hubby has been struggling all day to get the chest of drawers finished and I feel so disappointed that we didn't get done what we wanted to do. I wanted to finish our bedroom, take the kids to the cinema etc but ended up in bed ill. Oh well, let's hope tomorrow is better and we can get things finished.