Christmas Eve

This was the first time that Pete had been off on Christmas Eve for about 5 years so we decided to follow his family's tradition of having our Christmas dinner on Christmas Eve. It worked out really well with our wonderful Waitrose chicken breasts, gammon and duck with the orange sauce that I just sort of made up. I didn't do all the cooking - the idea was that I supervised or gave advice but of course, me being me took over at times!!

The table looked wonderful and we even got my Christmas wreath with a candle on the table. We used our penguin tablecloth and still had some penguin napkins left over from last year. As we were all going over to Pete's sister,s late afternoon, I was the nominated driver so sadly only had a sherry and wine!!! Laura got a lovely notebook collection, AJ got a wonderful blue top to match his blue eyes and Woody got a Saints mug. Pete and I got 2 big mugs - mine with a penguin on and with hot chocolate sachets inside and sweets so we were all happy. It was lovely to go out and be sociable and know that tomorrow, we can stay in for Christmas Day so drink what we like and the children can play all day.
As it was christmas holidays and I wanted mum to be able to stay with us so she could drink with us and not worry about driving back to my in-laws to sleep, we'd got the mattress down from the loft so all 3 children were in the boys room and Mum had Laura's bedroom to call her own. It worked quite well but is only practical during school holidays which is a shame.

Changing our Christmas meal to my Hubby's tradition, made me think about my childhood experiences of Christmas Eve. It was always full of expectation and it always felt it wouldn't be Christmas until Nunky Noo (my paternal uncle) turned up and Nanny (maternal grandmother)came over for our evening meal - in later years it was fisherman's pie for our evening meal.
Poor Nunky Noo!!! As soon as he turned up, my sister and I would play rough and tumble games with him, like tickling and him and he would grab our wrists and getting us to hit ourselves n the back of the hands and say 'why are you hitting yourself?'. We would also play rock, paper, scissors and another game which seemed to involve a bit of quick reflexes or esle we'd slap each other's back of the hands. We would wreak our revenge by messing up his hair - he was a bit of a fashion victim so in the 70s, he had quite long hair and flowery shirts. His length of hair meant that we could mess it and comb it in strange ways. In the evenings, we'd play board games or card games. My nany had a phenomenal memory for remembering what cards had been laid so she'd win whist but couldn't tell yo what she'd had fpr dinner though. It's odd how your memory does such strange things. Nunky Noo didn't believe in letting children win and would play dirty in chinese chequers or any game!!!
One year I had bought nunky noo some compost so didn't have wide enough wrapping paper to wrap it up in so spent the afternoon cutting out hexagons of different christmas wrapping paper and gluing it together to make a huge sheet of paper. It was such a huge piece of work and after that it became a tradition to wrap a present in this paper each year so alternate years, it went between him and us. It lasted years and became quite a tradition. It must have eventually broke but lasted a good 10 years - don't think the glue or paper we have now would last that long.
In the late evening we'd go off to the midnight service. Then come home and have some mince pies, gammon sandwiches or sausage rolls with our hot drink and then go to sleep. Fancy eating that much just before bed!!
This year neither mum or I had the energy to go to our local midnight service. It was too late for me now in my state of health.

AJ woke up just as we going to put the stockings out in the bedroom and wouldn't go back to sleep. Eventually, he went to sleep and so did we but without putting the stockings out!! Luckily, I woke up at 4am and took their stockings to their room. Hope theydon't wake us too early!!

Tuesday - AJ slept for 12 hours so was a bit calmer today. He didn't wake up till 920am so it was a bit of a rush to get him ready for the childminder especially as needed to get the presents and cards out to people. I've lost so much time as I've been in hospital so frequently. Usually, I start doing some christmas shopping in november and take it all more slowly. Thank good ness for the interenet and that has been such a huge boon to me. I've even been in for for collection of the parcels except for 1 I had to collect from the post office and 1 from the neighbours.
Mum and I eventually went to Waitrose about 11am where parking was chaotic and the queues were quite horrendous. I was desparate for the loo due to all these water tablets I'm taking. The department head was about mid 30s and was really helpful. She let me use the staff loos and then offered to pack our shopping for us so we could sit down. It seemed such a kind thing to do.It seems so wrong that my mum at 73 is looking after me again. It should be the other way round. Waitrose were true to their word and gave mum and I, 2 chairs to sit on and the dept head and till lady unpacked and packed our shopping and even found us a man to push it out to the car and put the shopping in the car. I know it costs more but it tastes better and the quality of the food is so much better,
After the shopping we called in unexpectedly at one of my monday helper friends to give her her christmas present. She invited us in and we had some lovely coffee and mince pies so thank you.
In the afternoon, we just unpacked the shopping and i had a rest until 330pm when hospital transport turned up. I wasn't expecting an appointment and the ambulance driver rang the hospital and they confirmed that I wasn't due to be seem umtil the 8th january so they drove away and told methat transport was also booked for tomorrow as well!! I phoned chemo reception and they confirmed that there was no new appointment for me so cross as would have liked my chemo that day. Suppose it exlains why transport never turned up the other week!!
Wrapped presents in the evening - it feels like I'll never finish.

Christmas Festivities
Monday was very hectic. I took AJ to the opticians to collect his new Starwars glasses and the optician was surprised that I hadn't taken both boys as Woody's glasses were also ready as well. It would have helped if they had phoned and told me that as they seem so keen on phoning you about everything else!! We had parked on the roof above Sainsbury's Home Store rather than than the food store. The lift down has always been dodgy and today, it was quite frighteningly squeaky. AJ said it sounded like hundreds of rats runniung away - I think it just needed oiling. We got his glasses and spent some time in Sainsbury's buying pressies for grandparents and a few extra bits incase I got caught out somewhere. As soon as we got back and I then had to take Woody back to the Opticians. These new ones from the independent trader seem much stronger than the previous ones from Dolland Aicheson so hope he loooks after them better this time.
I got back home and got a phone call from the occupational therapist at social services so she could inspect the stairliof. It seems a bit late now. It was fitted on friday and so if it was unsafe anything could have happened. She came out almost immediately and agreed that the lift did bump over where it was bolted onto the staircase but it was OK. I know it looks as if it has been stored in the damp as the ratchets all look rusty. I couldn't help wondering if once you are classed as terminally ill they give you the oldest lift available or is that my cynicism again??!!!
Then the carer came and I was glad to see her. She was supposed to have been cancelled but she she never got the call. Anyway, she got me a snack whilst I was waiting for Heather and her 2 boys to turn up.
They came about noon and after a quick cup of tea and sorting ourselves out, we went out to Pirate Pete's where there is a small playarea but just about kept them occupied until our dinners arrived. The food was lovely but a bit on the mean side I think. Laura had a chocolate sundae with chocolate brownies, cream and chocolate sauce and icecream and then polished off her twin brother's fudge cake!!! I'd had huge trouble getting AJ to leave the house - but Heather did the trick and got him to organise where we were to eat and generally cheered him up and gave him lots of praise so he felt better about himself and that he had been given the choice about what we were doing. he is so tired.
By the time we got home, my mum had arrived so I sat and rested whilst Heather did the ironing and mum hoovered and I sat there as the lady of leisure!!! We had a lovely afternoon chatting and then I took Heather and her boys back to the station. We timed it rught as the return journey looked awfully slow but by the time we'd been to the station, the queues had died down and we got home quickly.
I came up to bed in a bit of a state as we both felt that we were too overcommited to people over the christmas and we would be letting people down if we didn't turn up and I felt all confused over who we saw and who we didn't. I was just settling down as my back was sore when 2 of Pete's friends came over bringing food and wine with them. They are good company but I felt so overwhelmed with visiting people all over christmas and so eventually, I decided which iof the events I would cancel and felt much better then. I did spend so much of the evening in tears and just not being sociable but just needed to clear my head. Once I'd made up my mind i felt better and then could settle. i did apologise for spoiling their evening. They were both very understanding as I don't usually fall asleep or cry all over them. We did have some laughs though. AJ was in top form and using a huge vocabulary, although we did both panic when he started to talk about the Virgin Mary. He told us that it meant 'lady' so that saved our embarassment. it was lovely to see theo
Ttomorrow, I will not go back to the hospice as need to get food shopping done and mum is here to help me do that. There will be no therapists by the sound of it so think food will take precedence!!! The local theatre are coming to sing and do a condensed version of Cinderella. Normally, I like pantos but I go to the hospice for the alternative therapy and we've missed a lot of that recently which has been sad and i know the rest of the group feel the same.
Am having duck on wednesday, with gammon and chicken so that we don't have to do a big cook on christmas day - old family tradition on hybby's side.

Hospital, Stairlifts and Home
Well, as many of you know, I did end up in hospital with a chest infection but am back home now.
I went to see the GP on wednesday evening but felt unhappy with the low strength antibiotics he'd given me so decided not to take them. Probably not the wisest of choices.
I woke up at 8am on thursday by the electrician and then went back to sleep again for a while. When I woke up I was freezing cold and felt so fluey and achey that I had to ring and go to hospital. Luckily, Pete had taken the day off sick himself with this same bug so he could take me in.
The wards were full so they were opening up the day beds as the ward. Eventually got moved to the proper ward and into the ladies bay. This time they treated me for a chest infection and so didn't waste time being treated with the wrong type of antibiotic.
The chest xray showed the infection was mainly based in the right lower lobe of my lung which is prone to infection as the tumour is squashing the entrance to that part of my lung. Had antibiotics via the drip till friday night and then switched to oral tablets.
they found my potassium levels were low so had a transfusion of that and am now on oral potassium supplements.
I had 2 units of blood as well as my haemoglobin had dropped so that has boosted me as well.
Came home saturday afternoon - thanks for the lift and have taught myself how to ue the stairlift. It's brilliant as can go up and down without huffing and puffing. Very definately second had but works so that's the main thing.
Today went out for the morris minor owners christmas meal which was lovely but I got a bit too hot and tired at the end. We've been busy wrapping presents and as usual have lost a couple in the loft.
Tomorrow have Heather and her 2 children down for the day and mum arriving to help me to get the food for christmas etc. Think a lot of tidying needs to be done first as bedrooms are a tip and need to wrap up pressies and get them up in the loft again until christmas eve. Also need to collect AJ's glasses which he is so excited about.
must go now as keep falling asleep and so will re-edit this soon but you now know I'm out of hospital, on antibiotics and potassium and extra water tablets and had 2 units of blood. The stairlift has arrrived.
night all and will re-edit it in a while

Selective Memory or Lack of Communication - you decide!!!
Right - Pete and the children hate it when I say that as it means I want a job doing!!!! This time they are wrong!! I wanted to say that Wendy remembered the programme I was referring to in my post before last was called 'Catchphrase' so thank you for that and as I never fully wrote about the last 10 days or so, I have added loads to the last 2-3 postings so if you are interested and have the time then please scroll back down.
Eventually, on monday I gave up of all hope of anyone phoning me back about my echo and spoke to a surprised receptionist in 'non - invasive cardiology' as I was told I should call it, there was the paperwork and appointment for 1030am on wednesday fully booked - hurray!!!!
Tuesday - I went to the hospice in the morning and it was the annual Carol Service. We started off with a keyboard player and a violinist but the electronic keyboard decided to give up which was a shame but the violinist was amazing and played everything without music. It was a lovely service with some different readings/poems in to make it more open to different religions and non-believers. We sang 'Oh Little Town of Bethlehem' which is one of my favourite Carols but had to sing 'Hark the Herald Angels Sing' which is too high for me and judging by the singing, everyone else in the audience too and 'Oh Come All Ye Faithful' which I also don't like and again has too many high notes in.
We got looked after well with plenty of tea and mince pies and shortbread and then all sat down for Christmas dinner. Everyone said 'it was really tasty' but I found it dry and overcooked - so sorry - usually the Hospice food is excellent and the Christmas pudding was more like a spongy Christmas cake.
I then had to sort out my care package with the social worker as the weekly care plan was all wrong and I needed to cancel the domestic/shopping help on wednesday due to the echo, lunchtime call on thursday due to chemo and was cancelled 4 weeks ago and no domestic help on friday when I was told last week it would start this week.
After doing this, I then went to a local garden centre to meet up with another Folkestonian for tea and a chat. It had been about a month since we'd seen each other so it was good to catch up.
Then I had to be home for the children. I felt more confident driving today despite the continual fog that persisted all day. after this I had to go back to the GP as the long acting morphine I take was giving me terrible acid reflux. I had been fine with the gelatin capsule type and that is what they use in the hospitals and hospice but these slow release tablets kept waking me up in the middle of the night with acid and it's painful and horrible and ended up feeling really sick with it. Once we'd got the name right, I managed to get the right preparation and have not had the same problem since, thank goodness.
Then today - wednesday - the district nurse came to take my blood for chemo tomorrow and then we headed off to the hospital for AJ and myself. On the way there, I got a phonecall from the neighbour who was kindly hoovering the house to say that the carer was there to do my shopping so that was frustrating as it had been cancelled.
We got to the special unit for AJ and I had a good chat with the psychologist whilst Pete made tea. They are still having mixed feelings about AJ going there to stay from monday morning to friday lunchtime for 2 - 4 weeks as they are worried that he will look back at this time and wonder why I 'abandoned' him during this last phase in my life. All I can do is write a letter and explain why we made that decision incase in years to come he wonders why he spent that time in the hospital and not with me. They are prepared to be very flexible about me visiting so think we need to go for it or we will never get this sorted and things in the long run will be worse for AJ.
This sort of conversation with a psychologist makes me feel so desparately sad as I am desparate for the children not to have huge emotional hangups when they are young people/adults as it limits your life and happiness. I feel guilty dying and leaving them without having a psychologist rubbing it in. I used to work in various Young People's sexual health and advice/counselling clinics and met what seemed like so many traumatised young people who had gone through a parent's death or messy divorce and then, for some reason, had not been supported properly afterwards and would be in all sorts of emotional states or have problems such as depression, self harming, unwanted pregnancy, low self-esteem and it does really scare me that I'm leaving my children alone with just their dad and how they will all cope. It's not that I don't trust Pete to bring the children up, it's just so much more difficult as a single parent. Will they blame themselves for me becoming ill? I dread some sort of research coming up in the future that will prove some sort of link between the way I have lived my life and breast cancer especially if it involves having children and the stress of it or my lifestyle when I was younger. I really don't want them blaming themselves for my illness and death and I certainly don't want them to think I abandoned them.
Better move on to the rest of today before we all get too upset.
I then went for my echo. I was exhausted from walking across the hospital grounds and pleased that there was a 10 minute wait as I wanted my heart rate to be a bit calmer. I'm not sure what sort of qualifications the person I saw today had but he was not very gentle and I ended up with a red mark at the bottom of my chest bone where he'd been pushing the ultrasound in. He told me that there was only a little fluid there so will have to see what happens tomorrow when I see the oncologist whether he still thinks I need this fluid drained off or not and what my heart function is. I'm not sure I really want to know as if it is too low then I will have to stop herceptin and I feel that is what is keeping the chemo working and me alive.
On the way home, my neighbour phoned again and said the stairlift man had arrived. The last I heard about the stairlift, I was told that it needed to go to 'Panel' to decide if we could have it fully funded. I'd had no phonecalls or letters about this at all so was not expecting this at all. We were only 10 minutes from home so he waited until we got back there. He phoned his office inbetween times but when we got in, he asked if the electrician had been in and so of course, he hadn't so they couldn't fit it anyway!!!
We had a quick lunch and then we went off to the junior school to see the years 3 and 4 christmas productions. They were very good but at times it was difficult to hear due to small babies and toddlers getting bored. I also fell asleep at some point.
I can remember being shocked when the twins were at this age by how many of their contempories who may have been slightly podgy at infant school becoming obese in years 3 and 4. I don't know why or if it is even a proven fact but it just seems to have happened in my experience.
I then had a quick sleep and was woken by the phone to say AJ's glasses were ready to collect. He is so excited about them. Pete paid extra so he could have something like 'starwars' on the arms so he wants them now!!
I then went to the doctor's as my cold is heading chestwards and I'm so scared of being as ill as I was last time. The 5th year medical student and my doctor couldn't hear anything on my chest but since I've been home I sound and feel wheezy and had one nebuliser and going to have another one before I go to sleep.
About 530pm, I got 2 phonecalls about the stairlift. One was from the organiser who was cross that the stairlift hadn't been fitted today as she had done a lot of organisation and rearranging to get the lift in today. It would have helped if they had phoned me first and as it turned out, as the electrician hadn't been in contact or been, he couldn't really do it anyway. The plan is now that the electrician is coming tomorrow morning and then hopefully, the stairlift on friday.
I've come to bed early for the 3rd night in a row - I mean about 5pm so had dinner in bed again which seems very early but think I need to be careful because of my cold/chest especially as I can hear rattling now. Time for nebuliser now and see what will happen tomorrow!!

echo date
After numerous phonecalls between me and the oncologist's secretary and the echo people, finally got appointment through for wednesday. Quite good timing as same time as AJ has an appointment at the same hospital so won't need to drive.
Presumably, I'll get the report the next day when I see the consultant for my chemo. Not sure if should pack bag incase they want to drain it off straight away. Scared about the drainage as not sure where they can get a needle through as I thought most of my heart was surrounded by the cancer.
I went out with the aim of finishing my christmas shopping. My friend who has been cooking for us on a tuesday took me out and I hired a shopmobility scooter. It was a different one to last week and I did struggle with the steering. It's not helped by how narrow the aisles are due to the christmas stock and that people have a habit of walking backwards into you. This one did not have a bleeper for reversing and somehow I managed to turn the right indicator on but couldn't switch it off. I think I'm just about there.
I got into bed very early and did some wrapping up of presents. The children also helped to wrap some presents as well so feeling very christmassy now.
Very tired and will write more tomorrow.

Cock ups and Fluid Round Heart
Firstly, I'll start by saying thank you to our friend who cooks dinner for us on a wednesday night as she had organised a wonderful lunch and we sang carols and had organised a fun quiz that was about christmas carols and songs and based on that Roy Walker Show whose name I've now forgotten but he said 'just say what you see' so that was a lovely distraction and as I walked up there with mum with no trouble, I now feel more confident that I can walk up to see her again on my own. I've really lost faith in my ability to do things on my own since being ill this time. It's so unlike me and hope I can get over it but I'm worried about my capability and if I will get muddled out on my own.
OK so hope you are ready for another report of cock ups. Well as usual if it could go wrong it went wrong. Was ready for 945am for my 1045am appointment but the transport didn't turn up! It should have clicked it wasn't going to be my day but ever the optimist....They had to send a taxi at 11am which was better really as had put together a basket of fruit, nuts etc for the chemo staff and I wasn't crushed in the back.The taxi man wheeled me down to the ward end as had bed booked and as we were passing the waiting room the chemo receptionist was outside and took my appointment card to book me in. By this time I was in agony from my back and shoulder and I was thinking in a minute I can lie down and I'll feel better. However, at the ward reception, the sister told me that no bed had been booked for me so I just burst into tears so she put me in the ward waiting room which at least had a supportive high back chair and got me a pillow to help me rest my back and I took 20mg of oromorph. Had already taken 80mg MST at 8am plus diclofenac and paracetamol.The sister couldn't find me a recliner chair for at least an hour so I just had to sit and wait. It was so frustrating as I knew the onc would order xrays and it seemed so stupid to wait to see him and then get an xray and go back to see him again but the NHS doesn't work like that does it!!Then the research nurse arrived with my notes after about 45mins and it was then I found out that I wasn't on the clinic list either so I don't know what had happened to why I got booted off the system. At least the oromorph was working and the research nurse spent a long time with me which was lovely and made me feel someone cared. Then my mum arrived!!! I just felt like throwing my nuts and fruit around the whole place I was so angry and unhappy and knew the receptionist had sorted it all out last week.At just after noon, I got a recliner chair so could lie down on my side and rest better. I saw the onc at 115pm who of course ordered xrays and examined me and thought I had new bony mets in my ribs. he really hurt me as he was listening and tapping my chest but he said my chest sounded clear and I had no obvious sign of cord compression. He also thought I may have strained muscles as I am so weak but can't think of anything I've done that is remotely strenuous.The onc came to see me about 4pm to say he couldn't see anything new bony spread but to me that means nothing as in 2006 my massive hip/pelvis one didn't show but he could see my heart had significantly enlarged and thought it was more likely that I've got fluid around my heart than heart failure due to herceptin damage as I've got no other signs of heart failure. So now waiting for emergency echo and fluid drainage from my heart. Not sure how they can do this as thought the solid tumour was wrapping itself round my heart so don't know where they put a needle in. He still gave me the herceptin though as we felt it was worth the risk.
My chemo didn't start till 445pm so didn't have the steroids till 5pm so although exhausted I can't settle to sleep as steroids make me feel so twitchy. My chemo didn't finish until 615pm and got home at 645pm. Absolutely exhausted and still in immense pain with no apparent cause.
Poor Laura is still continually coughing but wants and needs to go to school tomorrow.
Want to finish my christmas shopping tomorrow and then meeting friends for lunch.
I know I need this echo and draining urgently but also have plans etc I don't want to cancel and want to see AJ in his school production!! Want my cake and eat it again!!
Had a lovely lunch on wednesday at my friends house where we sang carols and she provided a wonderful lunch and a fun quiz that was about christmas carols and songs and based on that Roy Walker Show whose name I've forgotten but he said 'just say what you see' so that was a lovely distraction and as I walked up there with mum now feel more confident that I can walk up to see her again.
Friday - I went to my friend's house for lunch. My idea had been that we go out somewhere and I treat them as they usually come on a monday and do my housework but due to their work commitments etc we had to squeeze it in at home. I think we did better for taste at home as one of them had made a really tasty lentil and bacon soup with some lovely bread and then some lovely yogurts.
That evening, the twins went off to their Scouts' christmas camp. At least, they were indoors this time as it was a cold and wet weekend.
Later that evening, Wendy came round to see me so we sat in my sanctuary to have a good chat without interuption which was lovely.
The twins returned sunday afternoon and then it was time for our christmas ritual of getting out Tree and decorating it and the rest of the house. (Tree starts with a capital letter as it is a noun to us)
We love our Tree and it is Pete's ambition for Tree to last his lifetime. It is only 3 ft tall but we've had it since we've been together so it's very special. Before having the children, it used to be decorated with wooden toys like nutcracker soldiers, rocking horses, small angels and father christmas with a star on top and tinsel , baubles and coloured lights.
I've only ever made 1 totally co-ordinated tree and that was on the first christmas in my house on my own in 1990 and it was silver and pink and that was a real tree. Was that fashionable then as writing about it makes me think it sounds more like the 8os.
I always admire other people's co-ordinated trees and would like to have the discipline to do it but anyone who knows us would not be surprised to find our Tree is rather eclectric!!!
Since having the children, we've now got some really sweet little knitted toys, fluffy toys and decorations they have made plus the wooden baubles and angels I bought back from Prague in 2006 and the original wooden ones. We now use LED lights with reusable batteries and at the top is a rather badly made pink angel, I made at a mum's and toddlers group. It is based around an old fashioned peg and was extremely fiddly to make. I think it was way too over-ambitious for a 3-4 yr old to make and too ambitious for a then 38yr old with 3 yr old twins and a 7 month old baby to care for at the same time and I got very sressed doing it as I could see ithers making perfect angels and mine was all lopsided as I got the twins to help me but I made it and that is important to us. I never made it back to the group after that week - all the mum's were too arty for me and they usually only had 1 child to help make things and I had 3 and we had more fun jumping in puddles, blowing bubbles and building train tracks!!!! (Just thought I love bubbles -I've always wanted an electric/battery powered bubble machine!!! Bit late now for my christmas list and, actually can you buy bubble machines this time of year?- you see them in the summer. I always had pots of bubbles in the house when the children were young as it worked as a distraction when it got a bit manic - yes, the house got messy and wet but it was fun).
To go back to Tree, Laura always makes a nest for a cream robin we bought from a garden centre and nestles it in somewhere and then we add the chocolate decorations and sugar cane hoops that Woody in particular wants to finish off eating befire Christmas Day. Under Tree, we have some little penguin decorations and various other snowmen and other christmas decorations.
The rest of the house has LED lights and tinsel hanging around and there are penguin lights in the front window. This year, the children have put some decorations in their bedroom and Pete has put some blue lights and a little tree in our bedroom. For some reason, which I'm sure someone can give me a scientific explanation for, the blue lights make the bronze dragonfly have yellow wings. It makes it look very pretty so I'm pleased whatever the explanation is.

Hospice day
I actually had a bath today and it was blissful. I usually have showers but having a bath is now a luxury which I really enjoy.
I drove myself to the hospice and felt much more confident about my driving. As I hadn't really been out for a while I was shocked to see how much petrol had fallen by. It's a big relief though. I was really looking forward to going to the hospice as my shoulder blade area was so tense and painful and I wanted some reiki and aromotherapy to help. When I arrived I could see none of the usual practitioners but a lady who was obviously going to do cake decorating. She had made all these icing sugar pebguins so I thought brilliant, I can make a pebguin to take home. Wrong!! It was like watching something from the Generation Game as she did a full demonstration from the jam, marzipan, icing and decorating and we just watched. The cake is for our Christmas Party next week but I felt sort of cheated as I wanted the alternative therapies or at leaast take a penguin home with me!!! When I arrived, the drive had irritated my shoulder and the pain made me cry and moan and I just didn't know what to do. There was only 1 member of the daycare staff there and 1 volunteer and the physio was seeing patients. I really wanted heat but no-one could get me the cura- heat pads as they didn't know what I meant so I ended up taking oromorph which after about 15 minutes dulled the pain but didn't take it away and I just couldn't get comfy even with a pillow behind me. It must have been the first time they have seen me in pain like that as usually people always say how well I look so I think it rather surprised them. They kept telling me to relax which I knew but was impossible at that time for me as it felt like the nerve was trapped. The cake lady must have thought I was odd as I spent quite a lot of her demonstration trying to massage the bit that was tense and then when someone did find the cura-heat thing, I was sitting there with what looks like a giant white pad stuck to my clothes. I've just ordered some from Tescos but missed the half price deal as couldn't get a delivery slot before the deal ran out and they are £1.50 each. I'll have to see if I can find another internet site that does them more cheaply as at home I can warm the wheat bags but if we are out I need something else to help and it seems ridiculous to use morphine when heat and massage give the same relief.
At lunch, one of the other men who has been admitted to the hospice as a patient was very upset that the reiki lady wasn't there as he gets so much relief from this.
It did seem strange having this demonstration as she was talking to us as if we were all going to go home and make and ice a cake and how we could do different things with our grandchildren. She apparently comes every year but I actually felt quite offended that she was talking to us as if we had a future and we were all well enough to do fancy icing and it just rubbed it in that I won't be here next year to bake and decorate a cake and my fingers just wouldn't do this sort of fiddly thing now anyway.
This afternoon, we made paper christmas wreaths which was fun and I was pleased with my effort. They are going to hang them round the room for the party next week. being very selfish, I wanted to take mine home but hopefully as I've put my name in the back I can have it for after christmas so it can be used for another year.
I left early and went to a local cash and carry and bought a few food things, wicker baskets and some oasis and plastic flowers and some sweets for the stockings. I want to make a couple of baskets up with nuts, dried anf fresh fruit for the surgery etc and was so pleased with the christmas wreath I made a few weeks agao, I thought I would have a go at making a couple of table decorations for our christmas dinner.
This evening the twins have been putting their final touches to the history project and they have put them in presentation folders so they look very good now. Poor Laura - her nose just won't stop running and now she is coughing non stop but she is so desparate to go to school to hand her work in and do her presentation but I don't think she is up to it. Hopefully, Pete will take her to school tomorrow and then we'll see if she comes home after history.
One of my ex-work colleagues came round as well this evening so that was good to catch up and have got some loevly mints to eat and a book and magazine to keep me occupied. Must go - think we'll have to try some steam as she can't have any more medicine and she doesn't like hot drinks. Last time one of our friends made some special cordial up which really helped her so will text her tomorrow to see if she has anymore.

Weekend
Laura had a sleepover which went well and meant that the boys room, Laura's room and the living room got tidied!!! The girls arrived at 530pm and we had a chinese takeaway. They were quite well behaved and I did manage to sleep before the girls settled. They also let me sleep in and Laura cooked lots of omelettes for her guests so I was very impressed with her but the poor kitchen looked rather a mess but never mind.
Pete had the double bed with AJ so had a restless night as he is not a peaceful sleeper.
I slept in Laura's room and Woody was at his grandparents as he wanted to help his Grampa with the stall on sunday morining. Good job he has lots of thermal underwear from scouts as it was so cold.
He bought us all things from the market which was really sweet of him.
Hubby took AJ out to do the usual 'wodgy' hunt. I think I might have explained this before but when it is really icy, the children love to stand on the puddles and break the ice up and then slide the pieces across more ice. It makes the most amazing 'ding' noise. They also like to break the ice over their heads!!! All a bit mad but great fun. Pete got brilliant photos of all the ice and of AJ playing and breaking the ice up. It was amazing how the ice had formed. Some had formed in circular patterns and others were really angular. Isn't nature amazing!
However, on the way back when they were going up a hill at only 20mph, they hit black ice and ended up spinning at least 180 degress and maybe 540 degrees and so ended up on the wrong side of the road and actually completely off the road. They slid down the ditch and hit a tree and the car ended up at a 45 deg angle. The photos of the car after it had stopped were amazing as the whole of the back of the car was up in the air and it was amazing that they didn't get hurt and actually the damage to the car was not as bad as you would have thought.
They waited over an hour and still the recovery vehicle hadn't turned up but a landrover who was going off roading stopped and pulled Pete and the car out and it was actually driveable. There is damage to the drivers wing, door and front light but otherwise it escaped with little damage but is very sad to see the poor moggy in its bashed up state. Poor AJ was apparently quite upset at the time - well who wouldn't be - but now sees it as an adventure.
Pete had not really organised himself before he went out as he had little credit and little battery on his phone so by the time he'd contacted the insurance company to be rescued and texted his friend and brother, he couldn't contact me.!! This happened about 1045am. The first I heard about the accident was a phone call from the insurance company trying to locate the road Pete was on. I could picture it in my head but couldn't give instructions on where to find them. Luckily, Laura's friend's dad was here and I knew he knew the roads well in the New Forest so he took over the phone call and helped the insurance people. He also volunteered to drive out to find them but I thought they would be OK but thanks so much for offering. They insurance company were supposed to phone me back but never did and I had trouble trying to locate the specialist insurance company rescue helpline who were supposed to be sending out a rescue truck. TPete had his phone off so couldn't get hold of him to find out what was happening. Eventually at 1245pm AJ, Pete, his brother who had gone out with supplies turned up home.
Rest of sunday went quietly!!!
My pressure sore is improving but did give me a shock as it must mean I'm quite poorly for that to happen so quickly and I don't really feel that bad at present.
Spent quite a bit of time this morning - monday - doing some more to the memory boxes and my life story. I quite enjoy writing that - I just hope it will be read. It's social history really as I've written about how we didn't have central heating or a phone at home and how everyone used public transport and also to see how we are dressed. There is a picture of us as a family at the playground when I'm about 4 and my Dad is wearing his shirt and tie and my Mum looks very smart to be at the playground but in the early 1960s that was how it was. I only have one photo of my Dad and myself together and that was on my Christening Day as then it was the men who used the camera but there are family group shots. Actually, there are few photos of just Mum and me but having photos printed was very expensive then. Luckily, my father had slides rather than photos and when I had them put on a Cd Rom and then printed the quality is amazing and much better than the black and white photos that were developed.
Woody didn't go to school today as a bit coldy but really overtired I think. Laura went but her cough is so bad I'm not sure she will make it into tomorrow and I had to pick her up from school as she was tired and had fallen over this morning twice on the way to school as the pavements were so slippery- poor thing.
Mum arrived about lunch time which was the same tine as the carer came to make me lunch and my mother in law was on the phone to organise what we were doing about christmas. I'd only met this carer once before and then I had a houseful of people so I'm sure she wonders why I need help when people are there even though I usually spend monday lunchtiime on my own as the 2 friends who help me have usually gone by then.
A friend came over just after lunch so that was great to catch up. Then I went into the local shops to buy a few bits. I still find driving rather difficult and it seems to be my steering that I'm struggling with. My reactions feel OK and my judgement over what I'm doing and what others are doing, I just seem to not be able to judge the steering right.
We then had a family card opening session which was lovely. We had no actual post today which is suspicious - usually this time of year, I get post everyday but we have noticed that quite frequently we get post on alternate days. We are waiting for loads off the internet for christmas now. so hope they all turn up.
Tomorrow, I'll be at the hospice and mum has various jobs to do in the house for me so hopefully will be in if the goods arrive!!! The queue in the post office collection place is horrendous and is shut between noon to 5pm!! If it is another company delivering then it could be left at a depot 3-5 miles away so do hope we manage to be in.
Nearly asleep now so will review and edit tomorrow. Tuesday evening - edit done. Have I still left typos??

School Friends and Horrible Day at Chemo
On Wednesday 2 of my friends from school in Folkestone came to see me. It was lovely and hard to believe that 30 yrs has passed since then. It's always the same with really good friends isn't it. It always feels like it was only yesterday that you saw them. They bought me some of those lovely Gordon Ramsay chocolates that I keep hinting how much I like them and some long furry slipper boots which are so warm and comfortable. My feet are blissfully happy in them and they cover the gap between my fleecy long nightdress and the floor so thank you so much. They were made by a company called 'gluv your feet' and I would recommend them.
We had a lovely lunch out and then they had to go but hopefully will see then soon. It was only after they left that Pete said he'd have liked to have come out to lunch to so he culd find out the real tales from our school days and not the special adapted ones I tell him!!!!
AJ had been out with hubby earlier in the day to the behavioural place so that he gets to know the staff so that we can finally sort out his constipation and other issues in Januray. He seemed to have a lovely time and came home with a really good book which explained how all of your body works with all these lift the flaps bits. It was so well presented and probably aimed at the 7 - 10 age group. He liked the book but was very pleased that the school day at the unit was very short wth lots of playtimes!!!
Thursday morning started off badly as I must have gone to sleep in one position all night as when I tried to get up, I had little feeling in my left leg apart from pins and needles and it wouldn't move properly or take my weight. It was very scary. The carer had to support me to the bathroom until my leg came back to life. I had to take oromorph straight away as it was so painful. It came back to life slowly but was so weak that I could only hobble and it wasn't till mid-morning that I got the usual movement and feeling back. The transport arrived 15mins before I was expecting them and then I had to sit in the back on the driver's side meaning I had to get my left leg in first which is always difficult. Eventually, the transport helper assistant who was in the front asked me if I wanted to sit in the front by which time I'd manouerved myself into the back and the driver was getting my belt on so there seemed little point in moving.m I wasn't expecting to be 3 of us in the back and I was the only one with mobility problems!!! (I found out later the transport assistant was new so next week I will ask to sit in the front if they expect me to be squashed into the back). It was a really painful journey to the hospital and in the wheelchair to the chemo suite.
I spoke to the nurse who I had spoken to yesterday about getting a recliner in the chemo suite and she sent me through to the treatment room. The chemo nurses were not happy that I was 'blocking' a treatment chair and all day kept saying 'we could see more people if we had more treatment chairs' which felt like a dig at me. They could see I could hardly walk and I told them I had a pressure sore and that I had asked last week for a bed or recliner and was told there was none and to go in to the treatment room. I felt they thought I was lying about my pain, and my pressure sore. I never asked for any help off them. I got my own water and tea even though I was struggling with getting my leg to work properly so I was not demanding anything of them. It could just be me feeling vulnerable and misinterpreting them but last week, the nurses were saying they needed more nurses and never mentioned treatment chairs. I felt really neglected and abused really. I've got a bed booked for the next 2 weeks so that is a relief and my mum is here next week so that will be a great help.
I nearly missed having the zometa (bone strengthener) as pharmacy had put the vial of the drug in the tablets to take home so it was a good job I'd woken up and looked in the bag. It was run through extremely quickly as transport were waiting for me.
I was also sick in the chemo suite today after they sped the taxol up as again no-one had checked it during the hour it was running so was way behond time - they can't use the machine as it has to go through a filter. No-one came to see if I was alright after I was sick, it was left with me for about 10 mins and I must have just gone straight back to sleep but knew I felt really hot and ill and was waiting for someone to come back so I could explain how poorly I felt. That was the only time I asked for help and apart from getting me the sick bowl, no-one offered me any more anti-sickness drugs or if I felt OK. It was my 13th taxol so you wouldn't expect to suddenly be sick after being fine for the first 12.
It was a horrible day and I just felt that I'd been made out to be an unecessary nuisance and got no care. I could have missed my zometa and I think it was worrying that I was ignored after being sick and gone back to sleep. They knew last week I was using oxygen and wasn't this week so surely they should have checked that my oxygen levels were ok as I'd been sick and was obviously in a deep sleep. Felt really uncared for and misunderstood.
At least, I got home by 5pm but I felt too upset and sick to eat properly so had a strange mixture of fruit salad, creme brulee and shredded wheat. I had eaten a forticreme mousse at the hospital so had had some proper nutrition there as well as a tuna wholemeal roll.
Got to sleep at a reasonable time last night and felt much better this morning. I've even been out on my own in the car on my own and did a little shopping locally so felt very proud and it has given me some confidence back.
Unfortunately, when I got back I tried to rush around a bit too much and made myself breathless as the man from the stairlift company was coming and I needed to move a few coats and shoes so he could measure properly. It was then that I found that hubby had unplugged the oxygen so got in a panic and had to move the oxygen condenser out of the understair cupboard and then the ironing board fell on me so got even more exhausted and breathless. It didn't occur to me to use the portable oxygen but when I looked later there was hardly any left so need to get hubby to change cylinders.
That reminds me, the oxygen company dropped off a paediatric oxygen cylinder on thursday afternoon. I have no idea why Pete accepted it as it is so tiny nor did he give them back the empty cylinders. Today I phoned the oxygen company to be told that my prescription said paediatric cylinders!! I said they'd sent me adult ones previously but the person said the law had been changed and told me to phone the surgery and get the prescription altered. I still don't understand what this has to do with a 'law change'!!! This I did but neither the receptionist or myself could understand which box to tick. She told me to phone the company!!! AAARRGGHHH. I phoned the oxygen company and she agreed to phone the surgery to sort it all out. I'm fed up with having to sort all these things out myself.
The other thing is the carer noticed my pressure sore is beginnning to break down so will have to be very careful now how I sit/lay but it is so difficult doing things on your side and if I lay on my left side to use my right arm then I'm laying on my left arm which is swollen with the lymphoedema and the skin breaks down very easily there.
Going back to write christmas cards now. I actually quite enjoy doing that.

Shopping


I didn't go out all weekend. It was wet, cold and miserable and i couldn't face it. Poor Laura - her bed is under the window and she has been so cold. Pete made a roman blind out of a towel!! It is not attractive but it has helped her until we can get a better blind in place.


I felt a bit rough sunday night after our dinner and now I'm wondering if we'd undercooked the chicken. At first I thought I'd taken too much laxatives but now on tuesday evening, I think I've eaten something or got a viral infection. I feel really tired and keep falling asleep and then can't wake up and feel a bit fluey as my joints ache and I've got a strange headache that I get when I'm ill with a temperature. My temperature is not up but I feel ill.


Yesterday, I went shopping and probably overdid it but I was in my mobility scooter. I did really well in getting things done. I got my money back from Next even though I was later than 28 days as I was in hospital and then not really able to go out. I got Laura's bras changed in M and S. That was such a frustrating shopping experience. The refund area has had the wall moved so it is impossible for me to get down the queue and to turn at the end to be served. Debbie stayed in the queue and I waited at the top end until Debbie joined me in the queue. We had a coffee there but to get in to the cafe, we had to negotiate our way through all the homeware department with all the glass and crockery etc. The gangways were too small and someone had left crates to be unpacked in the gangway as well. I wrote to M and S before and got no reply so will write again.


I'd bought some make up in John Lewis last week but had realised I'd been given the gift bags but not the make up and skin products which were supposed to be inside so I collected them as well.


I also bought the christmas cards and wrapping paper. It's so odd that now the VAT has been reduced, the prices all end in very strange amounts now like £3.61. You wonder what they did with the 17.5% to make all goods end in 99p!!


I got home about 230pm and went to bed and slept straight away. My friend bought AJ back from school and let him in the house. I stayed awake long enough to speak to him and then fell asleep till about 4pm. I stayed awake for dinner and went back to bed about 6pm and fell asleep. AJ woke me up so I could read with him at bedtime. I just couldn't stay awake. I'd read to him and fall asleep mid-sentence. He'd try to wake me up and apparently, I kept saying things like "Do you want cheese on your baked beans?" and when he asked me about adjectives (why he wanted to know about adjectives at that time of night, I don't know!!) I said his shirt was too small!! My friends had come round and I couldn't keep awake. Eventually, Pete came up and made sure I was awake so I could entertain my guests. Once I was up, I was OK until 11pm.


When I woke up this morning, I still felt awful so didn't go to the Hospice and just stayed downstairs doing Christmas cards.


This afternoon, we had to see Woody's teacher to sort out a few homework things and then when we got back at 430pm, I just went to bed till 630pm when a friend dropped by and we had dinner together. I really struggled to get out of bed and by 845pm I was falling asleep in the chair but have joined in with the live chat on one of the forums tonight till 930pm and then been looking at emails etc and now am ready to go to sleep again. I can't work out if this is a reaction to stopping the steroids or if I've got some sort of bug. I do feel all achey like just before flu kicks in and am still dashing off to the toilet. I haven't got a temperasture though. I will have to see how I am tomorrow as if got infection somewhere then my bloods may not be right.

Friday - Busy and Exhausting Day
My carer came later this morning which was lovely to get a lie in. Then my friend who I worked with and is now training to be a health visitor came to see me. She helped with the washing and made tea etc before we could sit and chat. AJ had an inset day but was also due to be seen by the Bowel consultant today so Pete took him quite early up to the hospital.
A lot of people visited inbetween Pete and AJ leaving and returning again.
My friend was about to leave when the occupational therapist from the social services arrived to look at the staircase to see about a stair lift. She thinks our stairs are suitable but it has to go to panel to be discussed because of needing funding.
Then my friends from Surrey came to see me. He had been to a conference about anaesthesia here and my friend had come down too so she could see me. She has a chronic illness but you wouldn't know it by looking at her. You might think she looks a bit tired but apart from that you would think she was fine. We discussed how people's perceptions of an ill person was and how difficult it was to get people to understand when you were out, that you were not being lazy or difficult but when you ask to sit down, it is because we feel genuinely ill.
After asking Pete for 3 nights to make AJs bed and it not being done (he's been sleeping on a sleeping bag), my friend's husband did it for me so thank you very much. AJ and I both appreciated it.
Just as they were about to leave, the occupational therapist and assistant arrived with the electronic bathseat. It is an extremely interestingly affair. The motor has to be recharged and obviously that part stays out the bathroom as water and electricity don't mix. The bath seat sits on giant suckers and the sides of the chair fold in and out. You have to sit on it and swing your legs round and then push the button to go up or down into the bath. Will have to give it a try out if the bathroom gets warm enough.
They just about left when Debbie came with the ironing and then Pete and AJ came home.
apparently, they saw a different consultant this time and AJ was much more relaxed and could talk about his problems more openly so hopefully in January, he can be seen by the team at the Behavioural unit and he can get some help.
I had planned to go into town in the afternoon but I was exhausted by all these people so just sat and rested and did a bit towards my memory stuff.
The weekend passed without much incident. I helped all of them with their homework. AJ's seemed far too easy for him as it was fractions which he understood perfectly and must have taken him about 30 seconds to do the 10 sums. I helped the twins with their maths and history projects. It seems to me that they are not taught how to format or present their work neatly. We seemed to spend quite a bit of time sorting that out.
Near enough rained all weekend and was very cold so was in no hurry to go out once I knew that. I did some cooking with Woody and Laura and a bit of a puzzle with AJ.
On sunday, I helped with the sunday dinner again. Ican not get the timing of the yorkshire puddings and the roast potatoes right!! Baths/showers for all of the children in the evening. The problem I had all weekend was that it feels as if my spines are rubbing together and as if I've been kicked in my sacrum. I don't know if that is to do with me not having the transfusion of bone strengthener for about 8 weeks now as the onc said I didn't need it as the drug stays in your system for about 3 months or longer so think Iwill have to discuss that as well.
I really don't like being cold and seem to have been cold most of the weekend. The week's forecast looks horrible though

Chemo Day
I was told to be ready by 930am for transport for my 1030am appointment. The journey takes about 20 - 30 minutes but by 1010am, I was beginning to despair. I phoned the chemo reception and was told that transport had told them that they were going to be late. No-one thought about letting me know though!!
I got to the chemo reception at 1040am and asked about getting a recliner chair as my back and behind are too sore to sit for too long in an upright chair. They did give me a recliner chair and I relaxed happily and chatted to the other ladies until Debbie came when we chatted.
I had a very brief encounter with the oncologist again. He did not want to examine me and when I asked about my increasing chest cramps on my left side. He suggested I have paracetamol and use heat which I do anyway so that didn't get me very far forward!! He also reduced the dexamethasone (steroid) to 6mg so that I can reduce it midweek and be off it for some of the week and also not be so high on thursday night. I also asked about the water tablet and he said to stay on it so I will as it definately helps my lymphoedema and swollen ankles as well as more importantly, my breathing. I will try again to see the chief oncologist and see what he says about the chest cramps and pain, the steroids and the water tablets..
We had a lovely lunch of paninis and coffee and by 2pm, my chemo was ready. This meant that I should have been ready for 4pm for transport to take me home again. The piriton made me sleepy and after I had reiki by Debbie, I fell asleep until 4pm when I was very abruptly woken up by the chemo nurse who just seemed to grab the long line and chemo line and take them apart and flush it all before I was even properly awake. Debbie went to check that transport were coming and was told they knew I was there and waiting for them. Time went by and the chemo unit which normally closes at just before 5pm kept on seeing more patients. I couldn't believe it. Some of those women had been there since 11am and were only just receiving their chemo at 530pm.
We had to keep chasing the transport but still they didn't come. It was a dilemma. I wanted to go home and so it made more sense to go home with Debbie but as the transport was organised I was reluctant to go as it feels when you fall off the system, you won't get back on it again.
The ambulance eventually turned up at 615pm and I got home at 645pm. Pete got my tea ready and then went out at 730pm for his morris minor night!!! At least the children behaved and were really good and peaceful about going to bed tonight.