My hydration protocol worked like a champ last week, and so was repeated this week. With the increase in reaction (as expected), I made sure to slow but not dramatically drop the hydration intake at the end of the special handling period. As a consequence I was again up during the night to urinate at 11PM, midnight, 2AM, 5AM, 6AM and 7AM, but these had a more "normal" character - no being awakened by pain and then peeing like a racehorse! Really there is no getting around the third series - it is meant to have an effect and it does Hydration regimen this time made the urinary symptoms less than the third treatment of Series 4 (last time). The flu-like symptoms seemed to be slightly less also - and this may be to my decision to stay in bed most of Day 2 (today - Saturday). In the past I had been resuming normal activities as soon as I felt better, and this activity may well have impacted the tiredness I experienced early in the workweek. We shall see, as I expect to take it easy tomorrow as well, before hitting the grind again on Monday.The extra hydration and extra reaction added up to extra throughput and even more frequent dashes to the toilet. Several times during the afternoon I fell a few minutes short of making the full 20 minute intervals for sterilization!
It was good to have my own private express lane here in the house with all the supplies at hand!I should focus on the non-urinary side effects more, as they are only poorly described in my side effects tables. Starting about 5-6 hours after installation there is usually some cramping in the lower stomach or bladder area, and also around the right kidney in my lower back. Sometimes short in duration and severe, sometimes long in duration and mild, these cramps are always a wild card. Ibuprofen seems to alleviate the inflammation and swelling and dispose of the long duration ones quite well. Additionally there is pain and soreness around the "affected area" and often some generalized body aches and/or a headache. I find that acetaminophen addresses this type of pain more effectively. In the morning I try to gauge which flavor of discomfort is more pronounced, and then treat with the corresponding pills. For the general tiredness, exhaustion, and run-down feeling, all that will help is time and rest. For an introvert such as myself, time alone in a semi-dark room with TV or music to mildly distract me seems to work best. The other lesson learned is to rest, even when feeling dramatically better. This takes some discipline, especially when the weather is near-perfect as it usually is in Utah in September. Another thing I have to watch is my blog writing. My exhaustion and sometimes even "brain fog" renders me incapable of putting coherent thoughts together, and that effect may often be observed in these next-day postings. Fortunately my father reads these blog postings carefully and sends polite emails pointing out such errors, so they get fixed soon after posting!
For those interested in the details, the reaction table is below, about 4.5/10 on the nausea scale.
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2 comments:
Well done Steve, what a relief for you now to have close to a year off before the next set of treatments. Hope you are recovering well and watch out for the little fatigue moments in the next few weeks.
Not sure where to post this, but this is from my dad:
'Anon' had a much more serious case than I. When my bladder cancer returned after 9 years in '09, the appearance on the bladder wall (25% of area) was like blades of grass blowing around: I suppose it cd. have been described as mossy. I was told it was low-grade. After slow recovery from surgery, I had 12 weekly BCGs. Whereas I had sailed thru 12 such in 2000, these were much harder to sustain, as also the periodical BCGs since (at 3 mos. and now 6 mos. intervals).. I didn''t have back pain but pain around the perineum which was prob. unrelated to my bladder condition (a strain from shoveling snow, my son said).I agree with most people that urologists tend to be uninformative, unless pushed (let your spouse or friend do the pushing) and seem to have missed out on the alleged stress in modern medical school on engaging your patient intelligently and listening to THEIR account of things. I have several times met with vast wonder and scepticism from nurses about experiences which I know are very common among bladder cancer patients. Hope your recent biopsy proves constructive for your general recovery. P.S. I have never heard a doctor refer to anything as 'patches.' Perhaps I never had them.
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