Bile Duct Diaries X

At Home


Life is so much better now that I am home. I am getting amazing care and attention from Jane (aided by my cousin Nancy from the US), and I am free to moan and groan and feel sorry for myself (FSFM) properly when the need arises. A district nurse comes by every other day to clean the wound and replace the dressing. I have a 15 inch inverted smile across the width of my abdomen, which is still oozing but we have avoided any infection so far. So this leaves me free to wrestle with my three preoccupations: pain, food and sleep. I have a constant low-grade pain in the abdomen, but the traditional pain killers didn’t help much so I have stopped taking them and just rely on a sleeping pill and the ‘soldier’s little helper’ morphine before I go to bed. I used to dread the nightime because I couldn’t really get a good night’s sleep for the pain and the sitting upright on my back. That’s when I would do some serious FSFM while everyone else was sleeping through the night. But in the last few days I have been sleeping through and the big difference is that I can now shift my position to lie a bit on my side. This is the way I have always slept and it feels familiar and comforting. And food: the equation is simple: eat nutritious and protein rich meals to gain strength to speed the recovery. But, even though Jane prepares meals that make Heston Blumenthal look slapdash, I often have the strong sensation that I am already full and cannot eat one bite of food. The food in front of me looks great but I feel there is no place to put it and the appetite quickly evaporates. But this is slowly improving and I have days when I can eat a relatively normal portion.

My days just drift by, structured by my banal routines, which are important in very slowly building the recovery: trying to eat something every few hours, taking a 20 minute walk each day, dozing on the sofa in the morning, perhaps doing some light reading, watching the news, and probably a DVD in the evening before bed. Progress seems slow and this requires a lot of patience. Each is like the other, except for the visitors….that’s you. Now days are identitied by visits: ‘Oh, that was the day Susan came.’ They are a real tonic, but the irony is I can only manage about one per day, and I wish I could see more of you. I leave this gatekeeping up to Jane. But thanks to all of you who have come by.

Finally a word about the cancer. We met the surgeon last week who said ‘the margins around the cancer are now clean’, and he was pleased with the outcome of the surgery. They have found evidence of microscopic cancer cells, mainly in the lymph nodes, for which they are recommending chemotherapy. We have a consultation with an oncology consultant, Tim Meyers, on the 28th. (This was going to be tomorrow the 21st, but it is Good Friday). So I will send another diary out to you after that consultation to give you an idea what the treatment plan looks like.

We want to send Easter greetings to all of you, and hope many of you can get together with your families over the holiday period.

Love,
David (and Jane)