Sunday 1st March - Back to Hospital
I felt OK in the morning and took Laura into town to buy some more trainers - expensive this puberty and growing lark!! - and also a couple of T shirts as she had grown out of her previous ones. I felt quite energetic and not like last night at all.
After lunch, I supervised the children making bread rolls. The twins had made some wonderful bread rolls at their 'cuckoo' (cookery) club but it was AJ's first attempt at bread making. The instant yeast is even more 'instant' than I remember as you just add it straight to the mixture!!! Woody taught AJ how to knead the mixture and they all enjoyed making the bread into interesting shapes!! We then left the mixture to rise and I had a sleep and the others went swimming. Unfortunately, I think I left it too long for rising but we wanted to show AJ the 'magic' of yeast. We cooked the rolls and although Laura's were fine both the boys had made their mixture a bit wet so the bread was a bit flat but they thought it was great.
I then started to make sausage casserole and suddenly felt really poorly and in need of oxygen and a sit down.
Unfortunately, as Pete and clive had been redecorating and i hadn't needed the oxygen for so long, my condenser was in parts and my emergency oxygen was stuck right at the back!!! Eventually, I was settled with my oxygen and sitting down and feeling a little better but not great and knew my chest infection had returned. The problem was I really wanted to spend the night at home and I had the CT booked for tomorrow and the transport was coming around 730am so I thought if I could hang on till then I could stay at home.
Pete's casserole was wonderful but I really didn't feel well enough to eat much so went to bed and packed a bag ready for hospital and then settled down to watch Dancing On Ice with various children as they were taking their turns in having a bath. (In case you're concerned they did have clean water each!!!).
About 930pm - after the Dancing on Ice Skate off ( you can see I get my priorities right!!) and as I was feeling quite fluey as well, I started to panic. I didn't want to be as ill as I had been in november at home and knew I wouldn't make it this time if I wasn't in hospital. It is really important to me that I don't die at home so really the safest thing to do was to go to hospital. It was now after 10pm so thanks Matt for babysitting while Pete took me into hospital.
We must have had the worst wheelchair ever for going in a straight line and then I had the same bed that I had in November when my breathing collapsed so this didn't feel good. I was seen by some locum registrar who didn't seem that impressed by my chest xray so just gave me oral antibiotics. She made several attempts at taking my blood gases without oxygen which was extremely painful as they have to take blood from an artery on the inside of the wrist. I ended up with a 8cm bruise!!! My blood saturations without oxygen was 82% and even with 3 litres was only 94% but rather worryingly my heart rate was about 130. My heart rate had been this high before when I had had a lot of ventolin but the last time I'd had this was about 2 hours ago.
I slept reasonably and 4 room mates were quiet and asleep but the 5th was rather confused and kept asking me for scissors to cut her drip off but eventually I must have dropped off.
Monday morning I had my CT scan as arranged and did feel quite breathless laying flat despite the oxygen and everytime they asked me to take a deep breath I just couldn't expand my lungs at all. I really wasn't expecting good results from the scan at all.
That evening the children came to see me for a while which was good.
The junior doctor came to see me and said he wouldn't tell me the results of the scan and the registrar would but then proceeded to tell me that the fluid round my heart ahd increased and that my lungs were a lot worse than previously. That was not the sort of news you want to hear just before you go to bed!!
If you remember my last stay in this ward I told you about the toilets not locking and the wet rooms (posh word for shower room) where the drain and floor had been laid the wrong way and the windows not shutting properly, well not much had changed. Some of the toilets now locked but one had a notice saying that the lock had been reported broken on 7th February!!!! The windows now closed but on one windy night, the blinds still moved and you could hear the wind and feel the draught.
Tuesday - I went for an echo to see about the fluid around my heart. The operators were really good and explained what was going on and got a cardiologist to come and talk to me. She explained there was now about 2 -3 cm of fluid around my heart and although my blood pressure was on the low side, my heart function was not too bad but the fluid should be drained.
A few hours later, when my consultant came to see me, she said that they were now not going to drain the fluid as the fluid was quite thick and had strands of protein and blood in and so would block the needle if they tried to drain it. Really there is nothing they can do but hope that the chemo will reduce the inflammation and hopefully the fluid around my heart as it is the cancer that is causing the fluid build up.
The rest of my CT scan showed not much to cheer about either. There is a new solid tumour at the top of my left lung, the lymphangitis is worse so more soggy tissue in my lungs, the solid tumour around my oesophagus was bigger which we knew as my swallowing was so much worse and now I had fluid in the layers between my lungs and the outside (pleura). These are small and too small to drain at present but adding to my breathlessness.
In my liver, the small existing one at sector 5 is about the same size and the one that grew through my common bile duct in the summer has grown and there is a new one of about 2cm in another area of my liver.
There are also cancer deposits in the tissue layer between the bowels (peritoneal) and new soft tissue ones at the bottom of my sternum and near my stomach so all in all rather a depressing result.
Due to my infection, I couldn't start the new chemo this week and will have to hope that next week I am well enough to start chemo.
The plan was to have another heart echo on monday and see if the fluid is changing and if it needs draining.
All week, I spent just falling asleep at the drop of a hat. One day, it took me an hour to send a short text as I just kept falling asleep the minute I started to read or write. I really needed help help showering as I had absolutely no energy at all and felt so weak. I still needed oxygen but could get it down to 2 litres a minute and eveentually manage some time without oxygen but after a few minutes my saturations would drop to below 90% so looks like I'm on permanent oxygen till the chemo hopefully improves things. I will also be back on pureed foods unless the chemo works as well.
I came home friday afternoon and since being at home, I have managed to be without oxygen for soem of the time but my swallowing is getting worse by the day at a frightening speed and have started regurgitating again. The pain in my chest and back has increased due to the pressure of the tumour and I will have to ask for something different to numb the pain when eating. I had something at the hospice in July but can't remember what it was called but it did help.
I'm going back into hospital sunday evening so that I have a bed for monday incase they need to drain my heart but also so that I have somewhere comfortable to wait as they can not give me a time when they are going to do the echo. My back is so painful at present that I need to lie down or sit so that my back is well supported.
Mum is here and has been busy helping me try to tidy my corner of the bedroom and also to give Pete some more drawer space for his clothes etc.
The twins did their nighthike friday night and were so tired on saturday as they had no sleep friday night apart from about 3 hours and so missed their triathlon practice. On sunday, they all went swimming and did their homework apart from AJ. He has got an inset day tomorrow so will have to nag him then.
Thank you so much for all your kind words and messages.
I will post again when I know what is happening or if I can't get a message up here, I will try to get something on facebook or the forums.