New Bedroom and Coming Home
I was discharged on monday 28th and did feel a lot better out of hospital than in it. As it is school holidays and I needed to rest, I went to stay with my inlaws. It was absolutely blissful. Just quiet adults, my own bedroom and not being woken up by workmen at 530am. Also so lovely to be waited on and having my food pureed etc and having a quiet and peaceful time. I felt so lucky that they were able to look after me and mum and I'm so grateful to them for all their care to me.
Tuesday, I went to see a different solicitor. She was so much more approachable and wrote down in my will what we wanted rather than what that bumptious man we saw earlier wanted to do. She will send us the official will but also a plain english letter version which is also a great help.
I went shopping with mum to buy some more clothes as now down to size 14 and everything falling off!!!
I really look like a 'cancer patient' now. All stick thin arms and legs and big tummy. Once I start the taxol, I'll go bald just to complete the look!!!
New Bedroom
Wednesday was the unveiling of my new bedroom. Laura had put a ribbon across the door so I could have a special opening ceremony.
There was my mum, my in-laws, and the 2 main decorators (interior designers), and my children and 2 other children plus another friend who helped decorate. We had sparkling wine and taosted the bedroom. I was totally overcome. It is so beautiful - all duck egg blue and cream with cream curtains. It really is my sanctuary. They gave me a card from all the people that had helped. I don't even know who some of these people are!!! Plus some money to buy a new chest of drawers. I can't believe the genorousity of people. It is just so kind.
After that it got a bit hectic with the hospice nurse and a friend coming over but we made the most of the bedroom
I spent that night back with my inlaws and then
Chemo or Not
Hubby picked me up the next morning and we went off to the hospital. Unfortunately, my bilirubin levels were 60 so double normal but a great improvement on last weeks 320. I had the herceptin and bone strengthner instead. I also saw the dietician as I'd lost another 2kg in a week so will start on a new hi calorie supplement now.
The onc said the new tumour is small but just grew in the place to cause to cause the most damage ie right in the centre of my common bile duct and if it had been a few cms either way, it would not have caused me any problems. He was quite optimistic and was talking about me living months but obviously will depend on if can tolerate the taxol chemo and if it works. Even then he was optimistic that I could live for quite a while so felt happier and that I can now make plans again.
Went back to inlaws for dinner and then home to try out my new bedroom.
Friday -
I don't know if it was the prawns I ate for my tea or what it was but last night ended up being really ill from 2am till 4pm with diarhhoea, severe pain and sleepiness. I felt so ill and all the family were so worried about me but felt they could check up on me more frequently than the hospital would. I slept solidly from 11am to 4pm and then felt quite OK so had a bath and went down to the fish shop and eaten tea.
Poor hubby has been struggling all day to get the chest of drawers finished and I feel so disappointed that we didn't get done what we wanted to do. I wanted to finish our bedroom, take the kids to the cinema etc but ended up in bed ill. Oh well, let's hope tomorrow is better and we can get things finished.