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!!