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!!

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.