Sorry for not updating yesterday but I was just so exhausted I couldn't face it.
So to update you - We have met Ash from Palative Care and if there was ever a lady who deserves angel wings and a halo, this is her. Her manner was calming and reassuring, and totally honest. She has put Stewart onto a syringe driver so that we can start actually dealing with the pain relief properly. This was fitted whilst she was with us and within 5 minutes he was my Stewart again, chatty and sat up and taking an interest. She went through what we knew, what we wanted to know (which was the results of the latest CT scan) and then told us the options we had open.
At this point, we didn't have the results but she did tell us that the consultant would be round to let us know later that day but in the meantime she mentioned the dreaded word - hospice. But she explained that this wasn't somewhere he must go to die, but somewhere where his pain would be correctly managed without waiting 3/4 hour for someone to administer it and that once this was fully controlled. Obviously this came as a shock but as the local hospice, St Gemma's, is only 5 minutes from home and having had experience of it with family members we did know what a wonderful place it is. Having chatted to us about various options she left us to think about it but promised to be back.
I went off to take a call from my sister and she suggested that it would be a good idea to use that as a stepping stone for going home as psychologically he would know that going in for respite or to up the pain relief didn't mean he wasn't going to come home again. On the way back to the ward I bumped into Ash and mentioned this. She totally agreed, having thought about it and was delighted that I was in agreement as this would make it easier to persuade Stewart, who naturally is very scared.
Later that afternoon the consultant came in and we met another wonderful person. He gently asked us what we were aware of and then explained that the CT scan had shown cancer in the eye muscles, various places under the skin (head, back, arms etc) as well as one kidney, pancreas (which is causing all the pain) and lungs. So hey, that didnt leave much that isn't affected. I think he was taken aback by the fact we just accepted it but in truth I think we already knew. He talked to us about St Gemma's and totally agreed that it would be better for us than the hospital. What blew me away was that he knew about the kids and their ages and could talk to us about how to help them. We mentioned that it was 5 minutes from home and he asked where we lived - how funny is this - he used to live in the next street!!!!
After he left Stew went to meet my mum and Gemma whilst I grabbed 5 minutes to ask him the questions I needed to ask. He didn't rush me, he gave me time and more importantly he was honest. So basically we have somewhere between 3 months (possibly) to a year (if we are lucky). Now that bit isn't good news and it really hasn't sunk in.
I also spent time talking to the nurse looking after Stewart, who was in floods of tears throughout but a great support.
Stewart has been amazingly calm and that evening we spent time talking together and I mentioned that it might be suggested we use the hospice as a stepping stone to home and why - I more based the info on the fact that once we are under the care of the hospice it is them we call if we need advice, pain relief etc and being so close it will help us. It also will mean the kids can be supported all the way through, and I think he understood it.
Before leaving that night, we managed half an hours cuddle on the bed, with the curtains closed which gave me some strength. Being back in his arms where I feel safest was wonderful, especially having had very little physical contact as he has been in so much pain (and no, there was no hanky panky :) )
On coming home there were visitors till about 11pm, firstly my slightly batty but wonderful friend Ruth (who I shared my 40th birthday party with and puts everything on a spread sheet). She brought me a present of an emergency bag for the car containing a bottle of water, a box of tissues and enough chocolate and sweets to last a life time. Then our good friends Carol and Dave popped in to check on me - they have been brill and are taking Harley (the dog) out for a long walk every morning for us. Once they had gone I had to face telling Jamie, our eldest exactly what was going on. We cried, we laughed, we got angry but I couldn't have lied to him. I have to admit that by the time I went to bed at 2am, I was physically and mentally exhausted.