Emotions

Yesterday as I was writing my blog I was feeling very sorry for myself, and poor Mark the same as it turned out. I think we had both invested so much into getting me to Guildford it was hard to come to terms with the fact I was still in bad shape and that I could not be operated on immediately. However the care I received yesterday and the investment in getting me better has been wonderful.

So my blood levels were low and I have had two of three blood transfusions and I had a drain put into my liver/duodenum to drain the bile. I am still on antibiotics and now the bile is lowering I am able to eat a slightly more varied diet.

So it was a bit of a weepy morning for me as I waited to go to interventional radiotherapy for the procedure until 30 minutes before departure and a dietician came to see me called Mary Philips. When I was in Brighton I saw the nutritional team there and they all spoke of Mary in hushed tones and said if I could get to see her it would be good. As you all know I have been struggling with problems on eating and my restrictions were getting narrower with each procedure I was having. So I had a really hurried chat with her giving her an overview and I think that she is the first person who really understood me and the problems and probable causes. It seems almost life changing. She is on my case now. So before the operation as I have malabsorption problems she has suggested I have a few days of TPN just to get the optimum nutrition into my system, and that now can have whatever I want in the way of eating following the bile drainage.

She is going to look at all my blood tests, and speak to St. Marks who have been doing other tests, and my GP and put together a plan for me going forward to try to sort out my digestive problems. I cant tell you what a difference to me it makes to finally find this wonderful person.

Isabelle and her godmother Fiona arrived to see me after my procedure and that was fine for a bit until the operation painkillers wore off and so I waved goodbye to her. I spent a lot of yesterday in pain with my side objecting to the drain, and I have to say had a bad night. I have a fluid drip into my right arm and TPN into a cannula in my left arm, and a pain in my right side so all in all getting comfortable last night was an issue. I will have the two arms being used for some time to come until the operation and this might prove challenging for my sleep. Mark made it over in the evening. I am up for visitors until Wednesday and then for some days after that, but realise I will be a long way for my Sussex friends. Just let me know.

13/7/19