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I did sleep well last night but it was punctuated by a very confused man shouting but I didn't get out of bed at all so the anti-sickness pill which makes you incredibly tired worked. Would like some at home incase I get desparate for sleep.
I did the morning tea run for the other 2 ladies - my posh lady wasn't awake so she missed out this time. I was really cold when I woke up which is unusual. The radiators were all cold and there was no hot water. I was quite glad as I didn't really fancy having a shower. Apparently, when the fire alarm went off yesterday evening, it tripped the heating off and someone forgot to reset it. Anyway, it gave me more time to pack my things slowly.
The preparations for going home were almost complete. The social worker reorganised my care for thursday as have to be out early for chemo. The OT found a very neat and much more compact wheelchair for me and the physio said he would shorten my walking sticks on tuesday for me and my name is on the list for transport as well. This time they have put down that i need a front seat or be in the back of a 4 door car. I couldn't believe the last time i had volunteer transport from the hospice, it was in the back of a 2 door micra!!! Definately, couldn't do that now and it was so painful last time that I was in pain for the first 2 hours.
Hubby arrived about 1030am to finish the packing and get it in the car and we waited for my sister, mum and Mags to arrive plus I needed my huge supply of tablets. They have to explain all the tablets even though I know what I'm doing. I've got so many tablets now I think rather than having a medicine cabinet, Ineed a medicine wardrobe now. At least this time I haven't been left short of anything. I said goodbye to all the ladies in the ward and it felt quite sad to say goodbye. You sort of develop a special bond in a small bay even if one of them is making you annoyed.They were all teasing me and saying 'who's going to make our tea for us now?' (Actually, it's not teasing - it's a long time to wait when they wake you up at 730am and breakfast and tea doesn't arrive till 830am and I really need my tea in the morning) I even felt really sad at saying goodbye to the posh and manipulative lady - just soft aren't I!!
I've found already that I don't need to be on continuous oxygen so that must mean the chemo is having an effect which is wonderful. Just wish it would take this feeling away in my oesophagus when I eat some foods. I suppose it took a while when I first had taxol for it to work on my tumour there so it is probably asking for too much on one dose to notice the difference.
We were finally ready to leave about noon and drove off to the pub. It is on quite a narrow road down hill and as we were going down it, a delivery lorry was coming up. Hubby pulled across the driveway of a house and the lorry went by but immediately stopped in the drive blocking the road off to my sis and other cars. We drove off but my sister said that the driver refused to move over the 30-40cm needed to get cars round it so they had to wait for about 15 mins while he unloaded. She had got out the car and explained to all the drivers it was too narrow to get through but they wouldn't believe her so kept trying to get by and then having to reverse back. Each time, they had to turn round or reverse back so they all waved and made faces at them!!!
We had a lovely pub meal and I pushed the boat out and had a sherry and a glass of red wine. Then we all came home. Overall, the house was tidy but what is it with the washing when I'm away. Yet again, there were piles of underwear and unironed clothes in piles around the house so got very stressed whilst we sorted it out. I think it took us women about an hour to sort. When I'm here the kids help me with this so find it so frustrating that they don't when I'm away. So I got a bit hysterical about this which must have really spoilt my mum's birthday and I really didn't want that to happen so feel very mean now. In my memory books, it says 'what do you want your epitaph to say' - I think mine will have to say 'became overcome with sorting black socks'. Blame my childhood - I was always washing my dolls clothes in my battery powered washing machine and hanging them out to dry and then 'iron' them. It really is an obsession with me. As soon as I got home, I made sure the washing machine went on!! Completely bonkers!!!
Spent some of the evening doing individual things with the children. I spent time with Laura looking for christmas ideas for me and her. Laura wants lots of Lush stuff and also wants glass paints and a vase to paint for me. That seems the wrong way round to give her a present that she then gives to me. I think I will have to buy this before christmas so she can then give it to me then although she is so stressed by her homework at present, she doesn't think she'll even have time to make the butterflies we were going to do before I went into hospital. This seems wrong to me that she has so much homework. For her english homework, she has to design a leaflet for a place to visit and of course, this is something that she likes to do so her marine world leaflet is going to be so huge and really a too bigger piece of work for a deadline of 4 days and she is getting really upset about it when it should have been quite a fun activity.
Today, Woody had footy training and came back rather muddy. We then spent the afternoon cooking together. Well, I sat on the stool and did little bits to help but mainly he did it all by himself even if it was guiness book of records length of time to rub the butter into the flour for gingerbread cookies. He also made some flapjack and a double jelly which has all disappeared now. He is now so much more confident to put things in and out of the oven, light the hob and stir things with the heat on. I know he enjoyed his half term of food tech and said he wants to do that as a GCSE option. He did get a special certificate postcard for his hard work in food tech. I just feel so proud of him and then it dawns on me that I won't be here to support him with his GCSEs and I just can't get my head round it at all. It's the odd things like that, that reduce me to tears.
Then I spent time with AJ looking through the internet for pressies. Everything he wants seems to be out of stock via post but apparently in stock in the shops so hubby and I are going shopping anyway on wednesday so have to hope it's there and he doesn't change his mind again. Now we need him to decide between some lego thing and a castle/fortress thing. Whatever, we do it will be the wrong choice!!
I did some brain training on my DS with Woody. I was older today but actually came out as my age. My record so far is 42 and my worst is 65!! It can't read my writing is my excuse. He comes out as much older - anywhere between 64 -72 but it can't read his handwriting either.
My poor sanctuary is looking a bit sorry for itself and has become cluttered but am stuck as we had lost a box which is now found. I've also brought things down from the high cupboard so I don't have to keep reaching up and down all the time and have it close to me. Aha - just had an idea about trying to tidy that bit but will need help. My week seems so mapped out, I'm not sure how I can get anything done on the memory/cross stitch side/life story front.
Tomorrow, we're off to see father christmas on a train so will get my daily sherry there!! It was organised through hubby's work so was really cheap. Will be good to do 'normality'.
Then it will be monday and the first day with being alone for some of the day. The carer is due about lunchtime as is my friend from Oxford so will have to see how I feel when hubby leaves for work as to if get dressed then or later. We've been trying to get a keysafe thing for outside but have had to order it for collection on monday but hubby can't do that till after work so have to hope I'm strong enough to get down the stairs to let the carer in.
It is so odd being home. I can't believe I've been away for 3 weeks and what has happened to me in that time. In other ways, if it wasn't for the oxygen, it feels as if I haven't been away at all.
Thank you for all your comments, texts etc. Am trying not to text people at present as have a contract phone and running out of texts so if you contact me and I do have your email address, I'll probably reply that way. Think though that I've lost some email addresses so if you have given me yours and I haven't replied please could you either email me, text me or leave it on the comments page here and I'll just delete it after I've copied it.
Can't believe it is going to be Christmas so soon. I like going out in the early part of the christmas period to look at the lights etc and see the christmas market and I'm not going out to any Christmas functions so feels very odd that my usual christmas things aren't happening.
Must get ideas off family for christmas - family please let me know especially as I'm trying to do a lot on-line. Will also miss the christmas food shop as I just like to have a quick nosey about to see what's what. Just don't think I will be well enough to go to the big Carol Service that my father in law organises tickets for each year and think I'll probably end up in tears so best not to even think about going. I'm not even sure I will be well enough for the big adult family christmas dinner either. Ideally would like someone to invite us out for dinner on Christmas Day though. We've not done that for years - usually have christmas dinner on our own and then are sociable.
Can feel a list coming on and as it is so late, I think I had better stop stimulating my brain and just go to sleep now.
Must make sure I sleep on my side tonight. Think I woke up with pressure sores as had sat up all night asleep and been sitting up for a couple of hours before that. The steroids are just ruining my skin.
Probably, will rejig this tomorrow as writing it after sleeping tablets and oromorph so who knows what secrets I've given away tonight.