Weekly taxol is such a drain. The whole of my life feels it is being taken over by chemo either by waiting for district nurses to call to take blood on wednesdays, spending thursdays waiting all day in clinic to see consultant, waiting for pharmacy and then a free chair and a free nurse and then feeling high on friday, a bit disconnected on saturday, ill on sunday, spending monday on the loo, feeling better on tuesday and then 1 good day and back to the start. What is scaring me more is that I'm now on 5th taxol and if they are only going to give me 10, I'm halfway through with no options but knowing that death wouldn't be that far away.
I feel so much better as now can eat so many different foods and my breathing is improving so have to hope he will give me the 18 weeks full course and perhaps miss the odd week out to extend my time. My friend had a second opinion at the Marsden and she is at the same stage of chemo as me and the Professor there was willing for her to have vineralberine again so will have to push for that option. I'm just not willing to accept that I've got to the end when I feel so much better. I'm definately not ready in practical terms and I want to get my holidays in with mum and Pete as well. Emotionally as a family, we're not ready for me to die but I feel I'm getting ever closer to the end.
It's the odd things like feeling the cold more (although since I've been eating better that's improved), the way my ankles swell, my fast heart rate and the way my white blood cells don't bounce back as quick nor does my iron levels and the decreasing protein levels in my blood that concern me and makes the end seem closer. At least I feel I'm digesting my food now so that's a plus and must surely help my protein levels.
I suppose it doesn't help my mind that my hair is still falling out and so are my eyebrows. I can cope with no eyebrows but want to keep my eyelashes as i look really odd without them so looking cancerfied but looking well due to steroids and now not really overweight.
Back to chemo - last thursday, 2 of my closest friends from school came up from Kent to spend the day with me. Not the most usual of places to have a reunion but never mind - it was great fun. I'd seen the consultant and although my blood counts were low, my protein levels were up one point (hurray) and my liver and kidney function were fine so we both thought it best to continue and not miss a week out. I then ate a crispy tortilla thing with tuna without choking so really excited. I expect the other customers must have thought me quite mad eating on my own with a big grin on my face but it is truly exciting eating real food again!!
Then my friends texted me and we had a reunion out in the front of the hospital and stayed out there until I thought the time had come for pharmacy to have got my drugs ready. They brought pressies with me so am now the proud owner of a penguin neck pillow that came in very useful this weekend - he will be a much treasured and travelled penguin and some new pajamas so that I now don't have to walk around holding onto my trousers and a soup cookbook so that i can have more varieties of soup that are hopefully protein packed.
We just about timed it right and went into the posher end of the chemo suite for my chemo. We had such a laugh about our school days and when we did our interail that time went really quickly and then it was a battle through rush hour traffic back home to meet my family and the guinea pigs. One of them alway had guinea pigs when we were friends at school so I think it was nice for her to have cuddle of our little guinea pigs. Sadly, they then had to leave so hopefully will see them again before too long.
Thank you so much for coming.
Also a big thank you for the body cream - much appreciatedand for the hoovering and evrything else that people have done for us this week.
Friday - we went to collect our clothes for the Goodwood revival. They had a mock fur stole so that made the look better. Then we went to the local shops and lost each other - don;t know how, you know how short the high street is where we live!!! I got some bright red lipstick and nail varnish for omorrow as well.
In the afternoon, my friend came round to give me some aromotherapy which was lovely and then packed Woody off to his friend's house for the night to go to football training before going back to his grandparents on saturday. AJ was at a friends house and Laura and Pete went off to the opticians before the children went off to grandparents so we could have an early start saturday morning to go to Goodwood.
Seemed very quiet in the evening with no children so treated ourselves to a chinese take away. I had lemon chicken - it was divine and I don't think I've had any since may or even april. Infact, this week has been the first week since about february where I haven't had food caught or regurgitated so been a real pleasure to eat again and really must get round to eating a fajita!!!
next installment - the pleasure and pain of the Goodwood Revival!!!

Just came back from the hospital for a wig fitting. The lady was trying to convince me that a much lighter brown/blond wig suited me better than one closer to my natural colour. She is going to order both and I can bring them home and ask you locals what you think!!!
when I was at the hospital I thought I would get myself weighed as feel I have lost more weight. They were using different scales today and I weighed 69kg so a gain of 4kg since thursday and I've not been eating that well!!!! The nurse said that they found out last week that the scales were not right and weighing people less than they were so maybe I hadn't lost 5kg in a week after all but there again my blood proteins were low so obviously not doing that great.
Think I will stick to which hole my belt is on - seems just as accurate as scales!!!
Anyone fancy doing some ironing or know someone who will do it for me?
My neighbour has made a wonderful job of hoovering so feel more respectable indoors.
sitting in my PJs at 3pm and going to go to sleep or write on the computer upstairs until I do.

What a waste of a day
I spent most of sunday in bed or flopping on the settee. This seems to be the pattern now of weekly taxol which is a pain as I lose a family day. Why can I not feel like this in the week when it wouldn't matter? I did manage a good portion of spag bol but spent the rest of the day not wanting to eat so managed only a little in the rest of the day. Feel very pressurised about food this week as keeping a food diary and sunday looks appalling.
Monday - beginning to creep out my hole now and managed to stay out of bed all day and eat but had so much diarhhoea I really don't think I absorbed any food at all. Feeling like I've lost weight again which is worrying me and don't know what to do as can't physically eat anymore.
I did manage to do some of my life story so that was quite fun and was surprised by looking at the black and white photos that I could remember what colour my dresses were and even the feel of the material.
The house is a complete tip - think the extra bright sunshine emphasised it more. Have got an hours domestic help on wednesday and neighbour going to hoover today and Pete did the bathroom so hopefully things will improve.
If anybody is going into town - can't face it due to Boatshow and passing the Body Shop could someone buy me some body butter - don't mind which smell but getting through so much as skin so dry.
Washed my hair this morning and haven't dared look since but going for a wig fitting today. Think it will be time to get a hat out before I venture out the door and one I can brush hair out of easily. if I wear a wig now, my hair will stick to the inside and it will be uncomfrtable in the future.

Hair today - going soon

Seemed quite a busy packed week as usual and so still not getting done some of the memory book stuff done that I desparately need to do. I have been doing the Order of Thanksgiving Service and trying ot get quotes for that and trying to sort out when we can get carer’s allowance. The DWP need 2-3 monthly wage slips sp that means we are without that money for that length of time. I know they will back date it and the HR at Pete’s work won’t write a letter confirming that he is doing only 16 hours a week and what is hourly wage is. He also needs a new contract so having felt that the HR in the NHS was slow, the HR at John Lewis seem even worse - probably just down to a single person but since the warehouse are being so good it seems a shame that the department that are there to support you are not doing it.
Am writing this on the computer upstairs so am not connected to the internet so taking a guess where I finished off last time so sorry if I repeat myself.
Monday seemed to have one visitor after another which was lovely but confusing and quite tiring in the end. My friend came to do the ironing which was great. Then the hospice nurse came and then the carer’s supervisor came to do a risk assessment of the house and I suppose if I posed a risk so signed all these forms.
Then I had to collect AJ from school which wasn’t expecting to do this term but my friend is on holiday and hoping she had better weather than we did here.
Tuesday - had to be up early as the new carer was coming at 8am to help me have a shower. She was lovely and so am pleased that I will be able to have a shower more than once a week. Not too much hair came out this time but my hair is getting very dry as is my hand and feet again. I don’t understand why this chemo has this sort of effect on me. I really hope my nails stay on. I gave up with the dark nail varnish as it just falls off all the time and anyway surely the nailbed is deep down under the skin and that is where the main blood supply is so the chemo must be working on the growing cells of the nails there as well as all right way up.
I went to the hospice in the morning and got my 2005 wig cut as it was so long at the front. I’ve given up with the thought of the wearing the red 2006 one after Pete said I bore an uncanny resemblance to Esther Rantzen which was not the look I was after. It is a shame as the actual style is good.
I got my nails painted a sort of browny colour which is more like my style. I bought a Simpson’s Cluedo set and a small table football set there so that helps to fund the hospice. I also had aromatherapy on my feet and legs but ran out of time for the reiki so must try that next week again.
I then went to Sainsbury’s to buy food for me to try to get myself to eat more as I know I’m losing weight still. Got very tempted and succumbed to buying new clothes. Think I now have enough trousers and one skirt should be enough but may look in Matalan as can’t see anything in Peacocks or QS and am so reluctant to go back to Primark but I still have £25 voucher to spend there so may buy need to winter coats for the children. By this stage, the trolley was heavy and a really nice assistant helped me by pushing the trolley to the tills and taking the trolley to the car and putting it all in the car. By this stage, it was time to pick AJ up and it was raining hard. I picked him up and set off to look for the twins. We couldn’t find them anywhere and by this time, I thought they would be at home. At 4pm, they still weren’t back so went off out again and found them near the house absolutely soaked through apart from Woody’s shoes which seem totally waterproof.
I made a wonderful choice at Sainsburys - a crème brulee where you put the brown sugar on and caramelise it yourself. It was so delicious.
Got a very distressing text from one of my friends who said they have now found multiple brain tumours at the front of her brain which explains why her vision is so bad but of course means she can’t ever drive again. We are going off to see her later in the month and have the train ticket so she is desparate to see us like we are desparate to see her. We will meet up somewhere even if it is when she is in hospital. We can share a taxi to wherever she is - we need to see each other. Think we will have a shock at how we’ve all changed as it is nearly a year since we’ve all been together.
Wednesday - I had to cancel my domestic and shopping help as I went off to West Sussex to meet up with some other secondary breast cancer ladies. I got a train to Esher and then a friend took me to the house where we were meeting. She has kindly given me all her wigs and scarves so will return them to her or the wig bank when I have finished with them. There was only 5 of us but it was worth it. I really surprised myself as I managed to eat some lasagne. It was a sloppy lasagne with plenty of red wine in and was so delicious and wonderful to eat proper food again. She had also made an apple sponge and almond pudding which I could manage especially with double cream made from Guernsey and Jersey cream and a raspberry mousse again made with cream.
The journey home was quick as I didn’t have to wait inbetween trains but did have a rather rushed walk between trains and didn’t think I would make it but I did and got a seat without a problem. The problem was with my legs. They seemed to have lost all their strength. I got stuck on the waiting room seats and then couldn’t get the necessary push up to get on the train or in the taxi home. It was rather scary and I don’t why I had become so weak. It must have been the length of time I was out as I was not expending energy when I was there and it wasn’t far to walk at the station but I didn’t have my legs up all day and so my ankles were quite swollen when I got home.
The children and I had great fun trying on all the wigs and hats. Laura built a beehive on top of her head and said she was Amy Winehouse - it looked hilarious anyway. AJ tried them all on and Woody tried the long wig on and looked all coy so got loads of pictures of them and me on the camera. We hadn’t giggled like that for ages. Laura was also playing with the scarves and could do a really good impression of Rapunzel saying ’Rapunzel, Rapunzel, let down your hair’ and letting a brown scarf fall fro the top of her head. We will have to treat them with a bit more respect I think.
I got another distressing text that night. One of my friends who is 43 or thereabouts has had a ministroke. She is out of hospital now and said to be OK but gave me a shock and I’m sure everyone else as well as herself and her partner and family. Feeling very guilty as not sent her a card or anything yet - will have to put that on my urgent list to do. If you are reading this - I don’t have your home email address and I send you my love and hope you are getting better and I will write to you. If anyone else knows who I mean and has her home email address, can they send it to me please. I have her home address.
I was good and had another of those high energy drinks that night.
Thursday - got a lift and company from a new friend which was lovely for my session of the taxol chemo. My visit got off to a bad start as I’d lost 5kg in a week which was a shock. I knew I’d lost weight but not that much as my belt was now on the 5th hole and not the 3rd anymore. Must have been the energy I expended on going to West Sussex.
The chief oncologist was not happy with me as not only had my weight gone down by rather a lot but it had the knock on effect of making me anaemic again and rather worryingly my blood protein levels had dropped to 25 from the 31-33 it had been at for the last 6 months or so. It should be at least 35. I didn’t even look at my liver function tests but my kidney function (creatinine) was normal which it hadn’t been for ages. I had to persuade him to give me the chemo and promised I would have more fortisips as they are high in protein and write a food diary. I think I’ve got so sick of soup etc that I’ve given up eating especially on my own. This week has not been helped by the continual diarorrhea and the continual acid reflux I’ve had. I found out that the stomach protector that I’ve been taking since I was in the hospice causes diarrhoea so am going to go back on the other one I took before as it worked better and I can take one morning and evening if needed. I think I need you all to text me to remind me to have my hi energy drinks and to try to eat more at lunch time. I ate all my soup from the hospital canteen and ate most of the sponge pudding and custard as well and did have a fortisip as well.
My friend had to go half way through my chemo and I fell asleep so didn’t notice that the taxol was only a quarter way through when it should have finished and Pete had arrived to take me home. The trouble is if they speed it up too much it makes you feel sick so after having a 1030am appointment we didn’t get home till 5pm again. I didn’t feel sick but was really troubled by acid reflux, I will be glad that I can go back on the other tablets.
I had some more of the lasagne as my friend had given me some to take home and I had the extra high protein drink and a crème brulee.
The real reason why I pushed so hard to have the chemo is that I’d rather miss next week’s chemo as we are off to the Goodwood Revival on the Saturday and often don’t feel that great on that day. The GP said I was determined and stubborn but he forgot to say I was devious!!!
Friday - was my second shower of the week. This time loads of hair fell out. I hand washed all the wigs and dried them on the washing line which looked quite odd. Once dried, I tried them all on. One has been ruined by someone cutting the fringe too short and very uneven. That wig is quite long and I think I made the right decision to have my long hair cut off at the age of 12 as I really don’t seem to suit long hair. There are some lovely wigs there and I hope I can wear them this time. If not, there are some lovely hats and scarves there plus the 2 hats I’ve bought already.
I actually felt I could try some different food today so had one of the home grown apples I’d bought back from West Sussex. It was so delicious and tasted even better than a shop bought organic one. I even managed some cheese and biscuits so was pleased and a cream doughnut!!! Life seems not to be dominated by the thought of food again and the diarrhoea has stopped so must have been the antacid tablets and not the taxol causing that then.
I went to see a printer about the Order of service printed. She took the details but couldn’t quote a price as the main man was away. They are convenient but the other printer in town seemed on the phone to know more what I was after and could give me a price. Strange thing was the printing people I saw today wanted the background picture in portrait when I thought as it was over 2 pages landscape would be best. Will have to print out 2 pictures and load them onto the CD. I couldn’t get Vista to do the service sheet in 2 halves of landscape so ended up doing half a sheet and gluing it all together. Will have to have another go or do it on powerpoint or something. If anyone wants to volunteer to set it up for me on our laptop so I can do it all on one sheet I would be grateful.
We’ve just found that poor AJ who despite being 8 has not lost a single tooth yet, is having the same problem with his teeth that Woody has. Meaning we can see 2 adult teeth coming up behind his baby teeth at the bottom. He thinks the front 2 are wobbling a bit but we see the dentist again in about 6 weeks so se what she says. It is going to be very traumatic and long winded it both boys have to have their baby teeth pulled out each time and is going to increase their chances of more orthodontic treatment.
Friday felt a good day despite doing the crematorium sheet and that evening even managed to eat some fish and a few chips. A friend came round so we all ate together and arranged for her daughter to sleep over and for her to give me a lift to my friends for a girls night in. I ate some porridge first and then had 2 glasses of wine and some peanuts. What a strange mixture!!!
Some other people have offered to help me which is good to know but I didn’t go to bed till 1am which was rather late.
Saturday - Woody had football practice and I got up late and had a late breakfast. Laura had had a friend over to sleep so none of us got dressed till about 11am. After Woody got back, we went on a mission to return all the crockery and pots we’d accumulated and to put more invites out for the Macmillan biggest coffee morning event. I’ve decided to do a wine and nibbles party on Tuesday 23rd night and a coffee and cake morning on the Friday so do come if I’ve forgotten to invite you but please let me know which day so I know what food, drink I need. After this, we went shopping and bought rather a lot of food. I really notice the price increase now in food as I don’t shop that often.
After this I had lunch of apple, cheese and biscuits again and then went to bed for a couple of hours before eating a risotto and a chocolate hobnob with my tea. It is so wonderful to be able to eat real food and not mushed puree all the time. Don’t know how long it will last for but must make the most of it and so going away for a few days seems feasible now and something I want to do. Just wish it would improve my breathing more. Eating solid food fills me up more so seem to be eating less but feeling fuller for longer and it is so wonderful to have a variety of food textures and different foods. Will now have to eat something more with all this writing about food despite how late it is.
My hair keeps dropping onto the keyboard. Think it will be touch and go if I have my own hair on Saturday but suppose if wearing fancy dress, a wig won’t go amiss. Since I’ve washed the wigs I still need to wash the scarves but they are all hand wash so will have to wait for tomorrow now to do that.
All in all feel more cheerful which is down to the eating.
Tomorrow, Pete is definitely taking Woody to some motor racing along with his brother and elder son. Not sure what I will do with Laura and AJ but usually they are good at entertaining themselves and as long as the weather is dry we can go out somewhere for a little while. Have recharged the scooter’s battery in case we go out for longer. Just hope feel better than I did last Sunday.
Sorry about the length of post. Keep meaning to put in a little each day which would make more sense and bore you all less and be more accurate in how I actually feel each day. I seem to forget how my emotions feel when I do a weeks blog at a time so you get a false impression how I really feel and give you all the impression that I’m coping better than I’m probably am.
Going to bed now and in morning will have to see if I can remember how to transfer data from this computer to the one connected to the internet saved in a readable format and how much hair I’ve got left. For some reason it seems to fall out more at night and it’s not just the friction of hair on pillow as at present my head is not resting on any pillow and my hair is just steadily dropping out.

Felt so tired on Sunday. We were driving to Wiltshire and was meant to leave about 10am. I really struggled to get out of bed and into the car and was hardly scintillating company when we got there. I did have a lovely roast chicken pureed and I really enjoyed it. I think we have so much mince that I'd forgotten about chicken. The 2 families went out and Laura came back with a lovely dragonfly that she'd made out of willow so will have to find a spot in the garden for that.
I had a sleep and had a vaue recollection of them returning but went staright back to sleep again.
We left about 7pm and it was so dark it felt like October. We used to have holidays in September and I've been swimming in the sea at this time of year and now am wearing winter clothes.
Monday - had lots of people here or seemed like it!! My friend came and did loads of ironing and I hung out 2 lots of washing. Then the hospice nurse came and then the care co-ordinator came to do a risk assessment. That was an interesting ecperience having someone peering at your hoover deciding whether it was safe and looking at your bathroom!!! then I had about 6 forms to sign.
My hair is definately beginning to fall out now - just wish I could do something to keep it until 20th for Goodwood. I tried on my wig from 2005 and that definately needs a trim or something. I then tried on the one from 2006. Goodness knows why I chose it. Style wise it's not too bad - short but a bit flat but it's auburn and Pete hated it as he said I looked like Esther Rantzen and I'm afraid I had to agree so if anyone wants an Esther Rantzen wig then you know where to go!!!
The twins still seem quite happy at their new secondary school although Woody is gettng abit fed up with the older girls patting him on the head and calling him cute. Their's is the first year with boys in. He is happy wth his pizza every break time though!! Not sure my purse is!!! Laura is buying a combo meal so gets dinner, fruit or salad and a drink and some sort of pudding. Today, she had a pasta king meal - whatever that is!!! She is coming home and doing her homework on her new desk and we are still having to nag Woody to do his and then he is rushing it again and you can't read what he has written - it is so frustrating.
The childminder is on holiday this week so I've had to go up to the junior school to collect him but she is back tomorrow and my friend who has been walking AJ to school is also away this week. I do hope she has had better weather than we've had here.
I 've had a rough week with the taxol this week. I've had joint pains and the runs so much that I know I've lost weight despite trying to up the fortisips and the prosene. Will have to dodge the dietician on thursday.
Still getting depressed about food. I've started to eat on my own in evening and not sit with the family whilst they are eating as I get too depressed seeing them eat normal food.
I really would like to go away for a few days but not sure how I'd manage foodwise. Would a hotel puree food?
Otherwise newswise been quite depressing. One of the women who I've met several times died very quickly over the weekend and one of my friends now has a brain tumour. It is all so scary and sad as they are young women and others on the forum are all having bad news as well from scans.
This is such a ***** disease. I'd never have believed that at my age I now need help to have a shower or have a cleaner or friends doing ironing for me. Yet I look so well.
Poor AJ seems to be really suffering at the moment - his behaviour is awful plus 2 hormonal twins = anyone want to swap lives/children???!!!!

Didn't sleep well last night. Seemed to keep waking up and going back to sleep again and would be holding onto a pen or a book and do a clue to the cross word and then fall asleep again. It was a very odd feeling and in the end I resorted to some oromorph as made my back hurt as sleeping in odd position.
Still can't believe it's friday so children off to school although I got up after they had left for school. As Pete now off on fridays, it gave us time to get different things done. We firstly went off to the fancy dress hire shop to get clothes for the Goodwood Revival. Really hope the weather improves or it will be waste of money hiring out these clothes!!! This time I wanted a dress so have got a 1940s style dress and little hat. Hoping that I will still have hair - it usually goes from the crown first so the hat will cover that bit and as long as I have some hair left round the sides it should be OK. Pete has borrowed a 1950s suit so looked very spiv like this time.We then came back to the local shops as we needed to go to the bank and get some food shopping. I also bought my self some trousers and a stripey cardigan which was on the wrong hangar so is too big for me so will have to take it back to get smaller size one which is a nuisance. I also managed to get a brown peaked hat which will also cover up any bald spots appearing form now till the great shave off. Just hope the hair on my face will go at the same time.
Spent the afternoon in my sanctuary typing out the order of the crematorium service and trying to find a company that will do a small print run. We want something different and more uplifting than just a plain one that we could knock off on the computer and the quote I got from one company was the same as one of the undertakers was quoting and then we can have the background and picture we want. I still need someone to volunteer to read my niece's poem and someone to collate and read out tributes from friends although I know the priest will read it out if necessary. I also need someone to collate and read the tribute from the family or more specifically Pete as I don't think he would be able to do it on the day. I've also written out 2 versions of my dying wishes - one for family and one for friends so will probably be giving these out at some point. Cheerful sole aren't I - still have no faith in the taxol as it is not improving my breathing and my swallowing although obviously having a good effect on my liver function and my lump in my armpit. Perhaps as it is just such a low dose, it wll take more time to get a ny effect on these or the consultant feels nothing will improve my swallowing now.
I'm having 2 or trying to have 2 fundrasiers for the MacMillans Biggest Coffee morning in the world, I'll jut ask for a one off donations and if people want to order from the catalogue they can or take part in the guess the name game. Really I see it as a chance for a get together and chance to catch up and make money. The wine and nibbles one is on tuesday 23rd at 8pm and coffee and cakes on friday 26th from 1030am so please come along. If I forget to send you an invitation, Im really sorry as I'm so forgetful at present, I've probably missed someone and no offence meant. Really am Dippykate at present.
Even though both laptops are vista, you have to save any word document in the 1997-2003 word version if both computers are to read it so have to keep saving it and transferring it on the memory stick - long winded by the time you've sorted out the way to save. I went to sleep before Pete had transferred it and can now see the cap to the memory stick but not the actual stick so probably in Pete's pockets as usual. Pete woke me up as he came to bed so am now awake again!!!
Was supposed to be meeting the new support group in Portsmouth tomorrow and although would lie to go, I just can't face sitting round a table in a nice restaurant and not being able to eat anything and feel I should rest a bit more tomorrow as busy on sunday. Perhaps i could just turn up for pudding if I feel up to it!!
I tried some of the new type of high calorie drink tonight - it wasn't too bad but can't see i can drink a litre of it a day. It comes in 500ml cartons and you can use it in cooking or can freeze to make ice lollies. It comes in 3 flavours - orange, vanilla and banana but the GP surgery said I can only order banana and vanilla.Why??!! You have to build up from half a carton to 2 cartons a day so is going to be very wasteful.
Getting tired.

Had a quiet weekend and spent quite a boit of time in my Sanctuary or our bedroom as it should be called. We found some of the ornaments but some odd things are missing like some penguins, the nails scissors and the glass plate that goes with the candle sticks!!!
I had to buy AJ school shoes on friday. I knew it would be busy but was still rather shocked to see a huge queue outside the shoe shop. There seems to be only one shop in Southampton with school shoes left. I spoke to the women either side of the queue so I could sit down and then when we got to the front found out we didn't need to have queued as the downstairs boys shoes sized 3 and a half and over, could go straight downstairs so will have to remember that for next time!!!!
Pete was at work monday and as now working only 16 hrs, was home by 4pm so that made a huge difference to the evening. I took Laura to the hairdresser as she gets such bad split ends. The hairdresser has layered her hair so it looks less bushy now and recut her fringe. Did a quick shop at the co-op and AJ was lucky enough to be taken out to a play area so came home looking like he'd just steppped out of the shower. No other boy seems to sweat like he does!!!!
Tuesday - took the boys over to their grandparents and Laura off to the dentist. She was so brave. She moaned when they put the injection in - but who doesn't!! She found it very odd having a numb mouth and was brilliant when the dentist pulled the tooth out. I then took her back to her grandparents and I went to the hospice for my dinner. The hairdresser wasn't there today as I wanted her to trim my wig so that I would be prepared for when my hair does fall out. In the afternoon, we made christmas cards. Apparently, lots of people buy these cards to support the hospice. One person buys 200 !!!! The camaraderie is good there even though everyone else is over 60 and one man is nearly 90. They are good fun and it was lovely when one of them came over to say they'd missed me. Hopefully, now can attend most tuesdays but during the school holidays I want to spend time with the children.
The twins were so excited about starting their new school. Will have to remind them of that in years to come I think!!
Somehow the time really dragged till 10am when it was time to start school. They had a short day for yr7 only from 1030am to 230pm. The walk was longer than I thought - it took them about 30 minutes so that should keep them fit. I then put the curtains in for drycleaning and wondering whether it would be cheaper to buy new ones!!! I then went to the shoe shop and bought a pair of brown, flat funky shoes so am pleased with them. Then it was off to Tescos to look for various things and quick dash home to be back for the twins. I went to bed as felt so tired. Really worried about blood test results tomorrow.
Thursday - had quiet morning before father-in-law kindly took me to the hospital. I did see the consultant today. What I didn't realise that I have skin nodules and then the lump in my lymph system. He felt I might need radiotherapy if the taxol doesn't make them disappear so that they don't ulcerate. That is another of my fears having open ulcers on my body. I don't particularly want radiotherapy as it may cause lymphoedema and life would be hard with double lymphoedema but still preferable to having an open weeping ulcer. He measured the lump today and made it 2.5cm and it was 4cm last week. My liver tests and creatine are normal and I'm not anaemic and my white blood cells are only just below normal so pleased. He doesn't think the taxol will improve my swallowing at all and the idea is really to control the ones in my liver so there goes the idea of a chicken fajita. He says they will initially give me 10 doses and then see how I am and what the results are like and then take it from there. There is a possibility of 18 which gets me to Christmas but that feels to far away to contemplate and after the way my liver one suddenly appeared it scares me so its head down to finish my memory stuff etc and enjoy each day. I feel like I'm walking the plank and don't know if I will fall off it at anytime!!!
My care package starts next week and someone is coming to do the ironing and hopefully with Pete home more I will have more time to get these things done and not be dashing around as much and make use of my sanctuary more.
Doing these memory books are so emotional as some of the questions are 'what do you want/dream of in the future?' and what do you want on your epitaph so I think there will be quite a few gaps as I just can't answer them - well I can but that would require a miracle. Other times it's fun - like what animal would you be and why? I think I've answered it differently in each book as it depends on how I feel. Just hope people enjoy them.
Really want Pete to photoshop the photos we had done as a combined family as I want them developed and framed so I can see them in my sanctuary. Hopefully, he 'll have time now to do that now.
Hope I can go to sleep as had big dose of dexamethasone during treatment today and it always seems to kick in late evening!!

Actually, chemo wise not felt too bad this week. Been out of bed and not slept every afternoon and been shopping and busy so all good signs.
The tickets for the Goodwood Festival of Speed have turned up. The twins have enjoyed their first day at secondary school.
Laura was brilliant at having her tooth pulled out.
Bought new PJs, shoes and trousers so don't look like a bag lady anymore.
Have got some time to myself before chemo tomorrow .
Domestic and personal help starting next week so things should be looking up.
Just thought after my last depressing post should post some happy news.
Bedtime for kids now and will stay upstairs so will re-edit this another day but just thought you should know there are good things in my life right now.

Full of moans!!!
I'm definately on a bit of a downer at present. I am so fed up with pureed food. I want to go out and have a chicken fajita or even a steak. It is just so boring!!! I want to chew and swallow like normal people. I've been trying to vary it between pureed dinner and soup and have different puddings but it's not the same. I can eat sponge pud and custard now which is an improvement and had one of Woody's chocolate bar biscuits he made. The dietician will be pleased with my high calorie snacks but I look at the mango and apples and bananas and think it would be so lovely to eat that.
I want to go out for a meal with Pete but what's the point when I'm stuck to soup for starter and mains. Anyone who knows me in real life knows how much I loved my food - my size 20 proved it!!!
I have to say it's lovely to look at myself in size 14 clothes and look reasonable and not an overbloated hairy thing. Getting expensive in buying new clothes but what else can I do!!!! . As I have long legs, I ofetn have trouble getting trousers long enough apart from M and S. However, I did get a pair of cords in longer length in BHS yesterday. It reminded me of the clothes I wore in 6th form when we could wear our own clothes but they had to be in school colours of green, yellow, brown and beige. It's only been in recent years that I've been able to wear green and brown without thinking of chemistry experiments!!!
Hoping to get to an M and S outlet centre next week and buy a skirt and some black trousers and then think I should stop as I have enough clothes. Even my PJs fall down and have so many of those. I need to keep hold of these big clothes incase my liver swells again.
My hair is just doing a small trickle of falling out. I'm really dreading being bald this time. Having a cold head is not pleasant and a wig is so itchy. I've seen some people wearing some lovely hats so need to get hold of those as well.
Been naughty and bought a pair of funky shoes. They are flat so are practical and also fashionable. Now I really want a higher heeled fashionable pair although the way I keep toppling over when I put my weight on my left leg is a tad disturbing and probably unsafe.
Also fed up with low energy levels and keep finding myself in tears over music that I like.
Then I get cross with myself for being so miserable as really considering how ill I am, I can actually do a lot. I can still drive. I still have some feeling in my toes and fingers. I even have hair and nails which I might not be able to say in a few weeks time and I can still walk round Tescos or other shops so life shouldn't be that bad.
I think it is the reality of dying feels so close now and it scares me. It scares me of what dying is like and what is the afterlife like? I see the stress and starin on my family and friend's faces and that is hard to bear as well.
I really hope taxol is doing something but I keep getting odd pains in my back. I don't know if this is boney pain or referred liver pain or even kidney pain. I hate it anyway. I'm so scared that my liver tests still won't be right and what will happen next.
So all in all I'm a miserable person right now and yet when reading other people's troubles on the forums, I know I'm faring better than a lot of them so do I wallow in self pity or do Itry and see a half full glass?
Today - self pity. Tomorrow - will try to do the more positive thought mode