Well Friday night was a nightmare. We gave Stewart the new medication for pain which seemed to help him but then his stomach pains got worse, he wouldn't eat and was nauseus and had terrible wretching throught the night. It was horrible to watch him in so much distress. So this morning I rang the number on the outpatients card - and god bless the oncology unit. They didn't think I was stupid, or pathetic, no, they were wonderful. They talked me through everything and even when I said I wasn't sure it was connected or that was it the new painkiller or the drugs from his latest CT scan, she listened and understood my worry. In fact she said I'd done the right thing ringing her and to bring him straight in so they could get his pain under control, but to be warned he might have to stay in. She said that he was all that mattered and whatever the cause, they wouldn't let him be in pain.
So off we headed to the new oncology building at St James's hospital, Leeds which is a credit to everyone who has ever donated to it. They got him settled and gave him pain killers and tablets to stop the nausea. Within 10 minutes he looked so much better. They have kept him in tonight so they can judge how much medication he needs so they can give us the right medication to have him home. He will rattle with all the tablets he takes, but I can live with that.
I popped out after lunchtime to come home to pick up some stuff and give him time to sleep without being aware I was sat there and I decided to pop into the Paper Dolls crop. What an amazing bunch of ladies they are, they made me laugh, they hugged me, they made me cry and they even provided a beautiful little 4 week old baby for me to cuddle (thanks Trina and Dave for that).
I then came home to spend an hour with the kids but this meant having to really sit down and talk to Jamie (17). I realised listening to him talk he hadn't taken on board the seriousness of the situation and it was the hardest thing I have ever had to do, to explain that if we got 5 years more then we would have had a miracle. When he said it was wrong to lose a parent when he was only in his 20's it broke my heart, especially as he may not get that long. However, after explaining that we were fighting this and not giving up, I also explained that we had to arrange things just in case, that once the relevant discussions were had they could be put away until needed, things like headstones on graves, finances, the bringing up of the kids, where his dad would spend his last days and how I had promised his dad I would look after him at home until it was either too much for me or that his dad needed more care. We have a fantastic hospice locally which my nana and papa passed away in, and I know that when the time comes, that's where we will spend our last days with Stewart. They allow you to stay there full time and care for your family and spend every moment with them and as I have promised Stewart I won't leave him alone, I know I can fulfil that promise there - thank god for St Gemma's.
However, saying that Jamie has made me realise that Impossible is Nothing. We can and will fight this bastard disease together and we will get as many years (or months) as we can, and hopefully now stewart will be pain free we can have quality time as a family and as a couple. I wouldn't mind but tonight he ate the whole meal the hospital provided - I didn't think my cooking was that bad!!!!!
So tonight, I sit here in my bedroom alone, knowing that one day it will be like this always. Watching the emotions that Stewart is going through is so difficult, to see the fear in his eyes is so hard, knowing I can't make it go away. However, after talking to Stewart about various things this afternoon, such as letters for the kids etc I feel better in myself and strong again, knowing we will do everything we can.
I would also like to say a massive thank you to all the UKS members who have taken time to post on my "say a prayer" thread, for the personal messages they have sent and for all the support I am getting. I have had links to so many things that will be useful, from claiming disability allowance, to Winston's wishes for the kids, to virtual candles, to stories of family members who have survived. You are an incredible bunch of people and I will be eternally grateful to you all.
As for my family and friends - i still cannot say anything worthy that will explain the total support and love they are giving us. My parents are magnificent as always, my sister and brother and their children and partners are amazing and my friends are unbelievable. Phonecalls, texts, food, collecting of children, walking of the dog, they have offered it all along with support to me and stewart and the kids. Even Jamie's friends have contacted me. I am so blown away by the local community support too, people that I have never heard of (but obviously know me and/or Stewart) are asking about us and saying prayers for us.
So all I can say is THANK YOU to each and everyone of you, I will never forget this.