Friday, September 6, 2019


I have been in the Victoria hospice nearly three weeks now. While laying around in a $10,000 exceptionally comfortable air bed with nary a chore to do may sound good, I am finding it a tad boring. While lying in said bed, in the last post I explained the first week was for new narcotics and old to come and go or increase or decrease all the while nurses and doctors carefully watching for any changes, given the very high doses of narcotics I had been on. Much has happened since then.

My 4th room and finally a single

One week after admission I had my first surgery. Done under a spinal anesthetic, a catheter was inserted into the intrathecal space surrounding the spine. The worst part for me was getting comfortable on my stomach given all pain I had, not to mention the bony parts from my original mastectomy and subsequent breast surgeries. Some twilight sedation fixed that and an hour and a half later I was shifted from the OR table while being told to cough and breathe deeply as my blood pressure was 62/26.  Any movement caused serious pain but surgical pain goes away, quite different than the other neuropathic pain. In any case, within a few days I was up and about other than the alarm of a leak which turned out to be mechanical rather than cerebrospinal fluid. It was easily fixed though it did delay my activity level which most of you know, is very hard for me~~I like to be active!l

September 3, 2019~~less than a week until the Stage II surgery. There has been progress for sure and my doctor continues to fiddle around with my meds in hopes to get it right. I have been home several times on passes for a few hours at a time. No overnight passes with an external intrathecal pump and to be honest I feel well taken care of here. The burning and throbbing in my hand continues when I am up due to circulation but it is so much better. All I can think of is that my hand is the farthest for the medication to reach. 

I do feel honoured to be here in the Victoria Hospice. I know most hospices do not have acute beds for pain management so that is one big thank you. I was so lucky when I was here just over a year ago for pain management but also to have met a doctor who had taken an interest in my case. He is an anesthetist first but also runs the Royal Jubilee Pain Clinic where he does several kinds of pain interventions. He did the stellate ganglion nerve blocks I had over several months but at best they are not long lasting. Frequently he and his team do simple epidurals and temporary intrathecal blocks  to relieve pain for those in end of life situations. They have not done a permanent intrathecal insertion with an embedded pump for nearly three years. Apparently it is costly and when my doctor first discussed the option, he said approval was needed~~not sure how high up, but it was approved so once I was admitted this time, he got the ball rolling and here I am. It was also explained by the doctor in charge of hospice, that I am simply a good candidate. I have chronic excruciating pain caused by a cancerous tumour but also have the expectation of "long" life expectancy given the slow growing cancer. He actually wrote something similar in his notes from last year. I try not to get my expectations too high but know that I am lucky already and to have a decent chance of pain relief if this works, is significant. There are certainly possible side effects, even so far as paralysis but we agreed that living with constant immobilizing pain is not an option. 

September 5th~~Wow, super annoying as yesterday I updated this post with photos but was  interrupted and unfortunately lost it all because I guess I forgot to save. F**K! 

I do want to describe what happened on my first pass shortly after that first surgery. I had wanted to go home for a pizza party with the family as all the kids were home. Andy had flown in from the north for a few days, Steven and Heidi were back home from Steven's year at the U of Nanaimo and Mary and her partner David were also around though it was their last night before heading east for a holiday.

Anyway I got my pass literally hours before this little pizza dinner and arrived home with my intrathecal IV via the external pump, a central port line and a couple of subcutaneous lines. I was dressed in hospital clothes not knowing what was coming. I noticed a couple we know on the deck as I came through the garage on to the deck but thought they had come for a drink. However as I walked into the kitchen I was so surprised to find a house full of friends and family there. It was my first ever surprise party and Dick did an amazing job considering that he had organized it long before I was in hospice. Every time I turned around I saw someone else. Friends from Victoria old and new, good friends from Vancouver who made the trip by ferry, Patti and Lyle by seaplane, Chris Worsley from Seattle and more. Mary's best friend Kath was there with 3 week old baby George and her husband Alan. Chris came on my 2014 Annapurna Base Camp trek along with his two sons Alan and Andrew. Kath was also there but did know the Worsleys. I love it that 5 years later Kath and Alan who met on the trek are now married and have a baby, making 3 generations there at the party. 

I almost forgot to mention the two orcas Lyle spotted in the bay. They breached and ate for as long as we watched them. What an addition to an already special night though we could not get a photo.

Heidi, Steven and Andy at the top with Mary and David in front

Elaine making sushi as always
Patti, Joanne and Bev

View of Gonzales Bay that evening

Mary, David, Kath with sleepy George and Alan

Chris, me and Suzanne

Baby George

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