September 4, 2015
Dear Friends and Family,
I’ve been home from the hospital for 4 days now. It is wonderful to be in my own house with Peter and RuiDog. The garden is lovely to sit it and, although I’m eating very little, it is great to eat real food rather than the sludge they serve in the hospital. I’m feeling rather surprisingly weak and mostly I just want to sleep. I did have a doctor in the hospital tell me my job when I got home was two fold: eat and sleep, so I guess I’m doing alright. Unfortunately I’m also suffering from my bad back – the herniated disk didn’t like the lack of movement.
I was in the hospital for 22 days! That’s a long time. It was a mixed experience like any canoe trip. I was given the big poison shortly after my arrival, followed immediately the next day with my own stem cells which had been carefully stored away. Then followed 5 rather surreal days when nothing much happened. The water was smooth, the sun shone and I had a variety of visitors. The autologous stem cell unit is very interesting. Because infection control is one of their chief tasks, all patients have their own rooms, the nurse to patient ratio is very high and the nursing staff are superb – very knowledgeable, caring and compassionate. All this seemed like overkill in those first few days. Then, right on the schedule, the water got rough and the weather turned bad. I won’t get too graphic here, but suffice to say that that the high dose chemo kills the lining of the GI tract as well as my bone marrow. So both ends of the GI tract were out of control for a few days. Very nasty. I didn’t get mouth sores (fortunately) and I only had a mild dose of difficulty swallowing – something other people get in extremis. I also suffered from very high fever. So those rapids lasted about 5 awful days. Then things got better and I was all set to go home, when I developed another high fever. I had to stay in hospital for another 5 days. Somehow this was the hardest part of the journey. I was dying to get of there by then. Overall, though, I was well looked after in a very well run unit. I also had a nice bonus. Outside my window was a beautiful garden made of huge glass flowers in a variety of colours. Very magical and full of whimsy. I loved watching how they changed as the light moved thru the day.
Thank you for your many many emails and cards full of poems, canoe trip stories, good wishes, encouragement, and love. They helped the journey tremendously. I’m sorry I’m not able to answer you individually. And many of you have written since I returned home asking how I am doing. Please take this letter as your response as I don’t have lots of energy.
If anyone wants off this list, let me know. Meanwhile I love your responses, but don’t expect individual replies back.
So I’m at home healing. I thought it would be hard to go slow, but so far, tiredness and weakness make that easy. I look forward to slowly building myself back up. Meanwhile, sleeping, reading, knitting and sitting in the garden with the dog seem to be the main activities on my To Do list.