Thursday, June 1, 2017

June 1, 2017

I finally had some time tonight to update how Brian is doing.  I always know when I have been remiss in keeping up on my blog when I start hearing from people hoping that Brian is doing well.    So, believe it or not, that question is very hard to answer.  Yes, Brian is better now that chemo has stopped, and we are grateful for that, but he is still far from being his "usual normal" self.   The disease and the chemo has definitely taken a toll on his body, the chemo-related peripheral neuropathy in his legs is very troublesome.  We had hoped that by this time, he would have started to feel better, and that the peripheral neuropathy would be easing, but that is definitely not the case.  There are some days I think the neuropathy is worse.  We saw a pain specialist at the Cancer Clinic last week, who has now taken over the management of Brian's "pain" medications, as the gabapentin that was given for his neuropathy certainly doesn't seem to be doing anything.  The doctor told us that gabapentin is always started at a low dose as it does have significant side effects and you have to slowly introduce so that your body gets used to it.   She has given us a regimen on titrating it up to a higher dose, and then we revisit with her at the end of July to see if there has been a difference in his neuropathy.  Brian started the new dosing last week, and still we are not really seeing any difference, and one of the major side effects is drowsiness, and that certainly is the case now.  Brian fatigues very easily now, he finds that he has to rest a lot, and he has to keep his legs up in order to try to stop the aching.  There are nights he sleeps on the couch as he just can't get comfortable in bed, even despite medication.   He is trying to keep up some form of exercise with walking, and he has even tried to go out on his bike to ride around the neighbourhood, and even with doing that it seems to completely drain him.  He often will feel nauseated in the late afternoons, and he will still need to occasionally take his antinausea pills as well as his morphine pills, although I have to give him credit that he has really cut back on the morphine.  He basically only takes a short-acting one in the afternoon and one at night before bed, and he is thinking that he may try to eliminate that one now that the gabapentin has been increased since the higher dose of gabapentin seems to help him sleep.  

So, we are not sure what to think, will he get better with time, is this the new norm, no-one seems to be able to answer that question.  All patients react differently, so hard to tell.  So, we will just have to shoulder on, and hope that things will get better with time.  Of course, Brian is very frustrated as all he wants to do is go back to being able to do things again.  

We are taking a 3-day trip to Niagara on the Lake in a couple of weeks.  I felt that we both needed a change of scenery, and just enjoy some time away from home, and we will just do what Brian can manage.  I have booked a nice B&B, and we are going to take our bikes and do a bit of biking, as biking is easier on Brian's legs than walking.  We can go out for some nice dinners, and we are going to go a see Me and My Girl at the Shaw Theater.  

Then at the end of June, we leave for Florida for a couple of weeks.  We are driving down with the dogs, and hopefully the long drive in the car won't be too troublesome for Brian, but we will take his pain medication and take it if necessary!  The kids will all fly down for a week, and again we don't plan on being too active, just sitting around the pools, and enjoying some meals out.  Of course, the kids will probably go and do some things on their own, but Brian and I will just enjoy some relaxation and take care of the dogs on the days they do other things.   

We also had some very exciting news in that my cousin, Liz, and her partner, Chris, will be coming from Australia to see us for a couple of weeks at the end of September.  I am so excited for them to come as we haven't seen Liz in  28 years!  We are planning on taking them to a few places in Ontario, of course, Niagara area, St. Jacob's, maybe Toronto, and plan on taking a few days to visit Ottawa.  So we are both very excited for this visit, and to meet Chris as well.  

Anyway, that is about it for now; I probably won't blog again until after our return from Florida.  I certainly hope that soon we will get consistent warm weather!  

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