stockdalecarina
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I’ve not posted for a while as been so wrapped up in events. Mary had 6 weeks in Christie’s and then came home on 9th May. She got NHS continuing healthcare. I am doing my utmost to care for her with the help of district nurses who come daily to administer a fragmin injection. Whilst she was in Christie’s they messed about with reducing steroids and as they came down, so did Mary. She ended up with odema (not sure how that is spelt) she had fluid from her toes to her chest that added 4 stone to her weight. She also got 2 different infections whilst there. Finally she got home, after I had had a stair lift installed and bought various other aids. The aids the hospital sent through Rosscare were so horrible they were only fit for the tip, so I sent them away.
Yesterday Mary was admitted to the Royal Manchester infirmary with signs of jaundice. They have done chest X ray which is clear and heart is strong. Blood tests of course. This afternoon she is having an ultrasound to see if there is a blockage. If so stent will be done today. She has been told that if there isn’t a blockage, nothing more can be done for her and she will be sent home (I assume this means sent home to die)
I’ve been looking at the U S research on the Cholangio Foundation website and I copied and pasted ti to Professor Valle’s secretary. Last Saturday I got an e-mail directly from Professor Valle. He can see her next week as he is on leave this week. I fear he will say that Mary cannot benefit from the American research. What else can I do??????? Obviously we both want desperately to prolong Mary’s life. Her 3rd great grandchild, a boy, was born on the same day as the new Royal baby. She says she wants to see him grow up and I know she won’t be around. I love Mary with all my heart and soul. I just want to go with her when we get torn apart.Mary is still an in patient at The Christie. She has been there for over 2 weeks now. She drove to the hospital and walked in for a CT scan full of hope. They kept her in and 2 days later she was bedridden. The car is still in Christie’s car park. I have managed to get an appointment for both of us with Professor Valle tomorrow at 2-30pm. I assume he is coming to her bedside. I have so many questions in my head for him re ongoing treatment. I refuse to stand by and let my Mary deteriorate without doing my utmost to find treatment for her, no matter where in the world that treatment happens to be. Mary is my whole world, we love the bones of each other, and we’ve been through so much together over 40 years. It can’t end like this–I can’t bear to be left alone in the world without her.
Even when/if she gets well enough to come home, our home is going to be invaded. They’ve done a referral to social services today for someone to come and inspect our home to see if they will ALLOW her to come home. I’ve been told quite bluntly that THEY decide and if they don’t agree then they will not allow us to be together. Mary does not want to go into a home or a hospice and neither do I. Can they really force us to be apart in what could be the final months of her life. I feel that one by one decisions are being taken away from us when all we want is to be together in our own home for as long as possible.
Yes Juan Valle is Mary’s oncologist. We’ve only seen him once before the chemo started. I’ve e-mailed his secretary about a referral to MD Anderson and for a request to see him personally. I have received an acknowledgement. My understanding is that Mary will be seen in clinic when she has been at home for around 2 weeks.
I’ll have a look at those links you sent. Thank you
