To start off on a slightly humorous note - today's tilted head count was 8 - a record!!! I am really not ungrateful for all the kindness that people are showing me, but I just can't help smiling inside when someone tilts their head!!!
Well today's update - not a good day really. It started off peaceful when I arrived at 8am at the hospice. Had a meeting with the Macmillan Welfare Benefits lady, Tracy who was so helpful and filled in lots of forms with me including the dreaded disability allowance form which is just baffling, the tax credit form and the blue badge form. She is rushing them all through so that we can get some money coming in. She has also filled in a Macmillan grant application to help towards petrol costs and bills.
However, by the time I got back Stewart was not having a good day. We had a call from his apprentice who was exceptionally off hand, totally un-understanding (is that a word? it's late so apologies if not) and rude. He has managed to lose us £250 on a job by invoicing direct which means the company he worked for isn't covered by our insurance and he only charged a ridiculous amount. I have to have a meeting tomorrow morning with him to try and sort out what is going on.
We went for our clinic appointment at the hospital for bloods to be taken and to see the oncologist. I have never disliked a doctor before, but by god this one is soooooo rude and abrupt. I had taken Stewart in a wheelchair because he has trouble with his balance and to be honest he hasn't much strength and when we got in she looked at him and said "why are you in a wheelchair" - "aren't you well enough for the chemo". How we didn't walk out there and then I don't know. His notes clearly showed he'd lost another 6lbs in a week which shows he isn't well and I wasn't planning on him exhausting himself the day before chemo - stupid women. However, as the appointments are in the afternoon which is Stewart's worst time of day as he is exhausted then and the fact she was rude to us throughout it meant that by the time we got in the car, he was in a worse than foul mood. And boy did I get the brunt of it, he'd got angry with me whilst we were in with the oncologist, he got angry with me whilst we were in with the professor, he got angry that I didn't speak, he got angry when I did speak, he shouted at me all the way back to the hospice and he got angry when I wouldn't let him get the wheelchair out of the car. A lovely day actually!!!! I took him up to the room and then left him because I couldn't cope with it any longer and went for a cup of tea with a friend, met the daughter of a friend who is wonderful and actually I count her as a friend too and had another cuppa and then I decided to be brave enough to return.
I went back to meet Alex who had arrived to spend time with his dad and I spent 15 minutes with him trying to talk to him when visitors arrived so I made my excuses and headed off to pick up Gemma. She'd not had a good day either - had been very upset about everything, why did daddy have cancer, why wasn't the dog a good dog so he could stay with us, she missed her daddy, she missed me, she missed coming home after school, she missed harley - oh dear - the tears flowed. I got her inside the house and left her cuddled up with her brother and headed back to the hospice.
At least being on our own gave us chance to talk and I apologised for upsetting him and after 20 minutes of talking he admitted how angry he had been about the oncologist, his apprentice, his cancer etc and apologised to me for how he'd spoken to me. Although I understand how he feels it doesn't make it easier to deal with and I suggested that maybe now he was ready to speak to a counsellor. He actually agreed and I hope tomorrow the nurses will sort something out. They have offered me someone to talk to too so maybe we can try and get our heads straight with all this.
Having come home and filled in the rest of the necessary forms I got a text saying "profiteroles or tiramisu?" Yep, my wonderful buddy debra had been to a party and along with Elaine brought me some leftovers to have with a cuppa tonight. I couldn't have faced the party as although I knew everyone there, I would have continually had to answer questions and taken away the enjoyment of it being a party. And after today it was too much. However Debra and Elaine sat with me for over an hour and chatted and laughed and drank tea (and Debra acquired 2 hats too!!!)
So I am off to bed and so not looking forward to tomorrow, the meeting with his apprentice, the chemo and everything else that seems to be going on - all I know is that tonight I am shattered.