PAIN

My last post was mainly about my uncontrolled neuropathic pain and where it had got me. It got me into hospice to start with. However I am not sure that I really emphasized how bad the pain was to get to that point. It had steadily been increasing for weeks but the last week was especially bad. By the end I would wake in what I call the dark and scary hours and kind of murmur to myself about giving up and going to ER. It is hard to mobilize when in pain so I just took my Hydromorphone every hour~~the 2-3 tablets prescribed and wait in hopes the throbbing, burning pain would stop. Usually 3 or 4 hours later I would fall asleep for a few hours only to wake up wondering if it would hurt if I got up. Yes would be the answer and just using the bathroom and brushing my teeth would start the whole cycle off again and back to bed I would go. I did manage to stay up long enough each day by late afternoon to play "Ticket to Ride" with Wayne, Anne and Dick, though few times I would have to lie on the couch for a few minutes to push the pain back. Every once in awhile I would actually feel quite normal and then would think that I had been imagining all the hours of lying down, taking my meds and hoping for relief. One highlight was managing to stay up long enough to teach Dick how to make Elaine's grandmother's biscuits. 

But Monday morning when the phone call from hospice came, so did relief come with it. The end game for admission this time was to get me a bed so that I could be guaranteed  surgery as soon as possible. However the immediate goal on admission was pain management. I had this neat little yellow contraption embedded in my upper arm that subcutaneously allows narcotics to be pumped in all by myself~~well there is an hourly limit! The Hydromorphone was infused through the pump into my arm via the little yellow butterfly thing.  Methadone in a higher dosage was given orally as normal plus a new one was added~~Ketamine. Ketamine I was told by doctor, was at one time a battleground drug, because it is easily given as an oral liquid that works quickly. I have also learned that it has been used as a veterinary tranquilizer, an anesthetic and also as a recreational drug. For me, this addition to my arsenal seemed to make all the difference and by Thursday things had really turned around. I could actually get up and do simple things like brush my teeth, wash my face and even walk to the end of the hall without that burning, shooting, electric pain that brought me here.

Back to the aforementioned surgery~~ it is scheduled for 0800 Monday morning. The procedure is the temporary insertion of an intrathecal catheter with an external pump. The  catheter will be threaded up the spine to the axillary area where medications will be infused from the eternal pump.  Following surgery I will be monitored for a few days to ensure that the  system works. 

Apparently this is Stage I. The next step if all goes well, will be back to the OR for the insertion of a catheter but with an implantable pump. Sounds like fun don’t you think? It will be done with a spinal anesthetic so I can let them know if there is unexpected pain as the catheter is placed. 

For now, I am laying around napping, doing the odd Sudoko, and reading books on the brand new Kobo Suzanne got me. She also added several books and got it linked with the library. Mary picked it up from her in Vancouver and I got it Sunday night~~perfect timing for my admission the next day. She knew I would love it as holding books had become so difficult I had virtually given up reading. After each page I had to put the book down to turn the the page, not to mention how hard it was just to hold the book in one hand. I read a whole book on my Kobo in the first 3 days here.

Dick has gone off today with Mary and David for on an overnighter on VK. I was supposed to with them but it is clear why I am not. I am just happy that they have this opportunity now.

Sunset from Van Kedisi in July

SUMMER UPDATE 2019

It has been my intention to post here for a couple of weeks~~in fact since the anniversary of my first diagnosis July 27th. The metastatic cancer anniversary is coming up later this month.

But things have changed so fast that every time I have started, either I have been in too much pain or I have not had the energy. July 19th (Dick’s birthday) we went sailing with Elaine and Suzanne and I am so thankful we did because I have not been out since. This week our friends Anne and Wayne came from Calgary to visit and sail with us for part of that time. When we made those plans I was able,  but just before they came I had to tell Anne that we might have to cancel the Van Kedisi part. Even up to Wednesday night I was protesting that we could manage. But we are glad they came nevertheless.  Dick got to cycle out to Sooke with Wayne while Anne and I hung out here. The three of them have cooked wonderful meals and this morning I  managed to teach Dick how to make Elaine’s grandmother’s baking powder biscuits for breakfast. It was a great break for Dick too.

I am now number #1 on the list for the Victoria Hospice. The pain has increased day by  day and my medications both routine and for breakthrough have gone up at the same time to the point that I have only been out twice all week, once for blood work and the other for chemotherapy. I started a new chemo drug on Thursday as my oncologist feels that Paclitaxel is no longer working plus side effects like tinnitus and neuropathy have crept in. 

So the pain is bad, but hopefully a surgical intervention will stop the pain even though though there are possible side effects. It is neuropathic pain caused by the tumour in my axillary area that is wrapped around the neurovascular bundle of the brachial plexus. Sometimes the burning, throbbing pain radiates from my scapula and and often goes right down my arm to my fingertips. That is happening right now and the fingertips feel as though electric currents are firing out. My recent scans showed nothing amiss but something is happening to create the pain. 

I am happy to say that I have won 2/4 games of Ticket to Ride while taking  Methadone on a regular basis along with frequent Hydromorphone for breakthrough pain so it seems that my brain is still functioning. Anne dislikes Settlers of Catan which is just as well as that game just may be beyond me at this point. 

Anne and Wayne leave this afternoon so Dick will be back to full time work here. Trust me, this is not easy for him with the changes hitting us so quickly. Nevertheless, this is not life threatening as my tumour is considered local or regional so far. Not to minimize the lack of use of my right hand and the debilitating pain but if the surgical intervention we are looking at is successful, then the pain may be eliminated. As my cancer agency pain doctor said a week ago, losing some more mobility is probably better than having to lay around most of the time. I agree. Despite knowing it s not my fault, I feel so useless.

Monday, August 12 update. I have been admitted one of what they call acute beds in the Victoria Hospice. There are 7 acute/respite beds here and 10 beds for those approaching death. I was here last spring for pain management too but this time the pain is far more severe.I will keep on a more regular basis but I already feel better in hopes that we will see progress sooner than later.

Also, Mary arrived last night and will be with us, working and visiting until she and her partner David head east to visit his relatives for a short visit. They both return after labour day to head back to Uvic. Before they leave Steven and partner Heidi move back from Nanaimo where Steven has just completed a university program. Andy who lives in Terrace where he finished his BASc in Nursing in May SUMMER UPDATE 2019is flying in on August 22 for a week. It is not often to have all 3 kids here in Victoria at the same time so I look forward that. Maybe I will even be home by then.

This photo was taken July 20th