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.