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!!!

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.

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!!

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.

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