Tuesday, August 30, 2016

Simple things are the best

I guess if I were to think through the process of blogging recently, it could appear to be a little morbid to be writing about a serious illness but….I really am not feeling sorry for myself so caution you to read this update in a positive manner as well. 

Had the grandson with us for the past week as he attended swimming lessons, swam in our pool, enjoyed great meals and good times. The therapeutic joy of having a five year old spend the end of summer with you cannot be downplayed. It wasn't the greatest of weather for lake swimming lessons but he did very well, learned lots and we all enjoyed ourselves. 

I travelled to the city for my oncology clinic appointment and treatments and all went fine. We drove down the day before so that the shore captain could help put the rest of the garage ceiling up in the afternoon for the daughter and son-in-law and I whipped up the nursery curtains for our soon to arrive grandchild. As our daughter was having a class in her MEd course, we headed out to supper at Ela's. Have eaten there before and it's….okay, but wasn't overly impressed for the price/service this time. Really had my heart set on dessert and when the server picked up our plates she said "all finished?" with just a couple of vegetables remaining, I assumed the next visit was going to include a dessert menu or at the very least a question as to dessert and a cup of tea as the tip is on the total if nothing else. She appeared in a few moments with the bill and said "thanks a lot". We stopped at Dairy Queen for blizzards, nuff said. Have been having some middle of the night awakenings (likely due to the steroids given with chemo) and was brought wide awake at 4 am by something I thought flying through the side of the house….turned out to be a helicopter overhead. An early morning clinic visit with new resident and oncologist and my chemo drugs were reduced to 80% of the original and the next cycle is four weeks vs three as I clearly had proven I responded to them. Upstairs to have the infusions and a bit of a struggle to get an IV, delay for new dose of meds and finally on our way after about six hours in total, so not too bad really. We headed out in a pouring rain (only the city got wet) and down to Lunenburg to meet up with the grandson and his Auntie who were visiting the Fisheries Museum as the lad had finished his swimming lessons and was celebrating his badge. We stopped at The Fish Shack where I had lobster poutine (no worries about side effects) and it was a foggy late arrival home. Another 4 am awakening - this one also included a VERY loud text message signal from the shore captain's cell - but back to sleep after a while. 

The weekend sped by and with the steroids (you can see how those athletes are so pumped) I got all sorts of things accomplished. Attended a coworker's wedding at the local church on Saturday which was one of the hottest days of the year and managed to wear my new hair in style. Got compliments on my wig as folks thought I'd coloured my hair and looked younger. It was actually pretty comfortable, so I know I can manage it now. We ended up with an impromptu swim/BBQ for a gathering of friends who enjoyed fresh halibut, beverages and great conversation. As I said to the life partner "I feel as if I'm myself again with being able to entertain as it's been more than six months since we had people over". 

Yesterday and today have been spent dealing with….hitting the wall. Think the complete physical exhaustion I woke up with yesterday is the after effects of steroid withdrawal as it was mentioned as a side effect. I feel a lot better this evening after finally giving in, rescheduling my car appointment and convincing friends to travel out to visit me versus going to lunch in town. Hard thing not to push myself as I usually do, but after 60 years of living in this body I am finally learning to listen to it. Had a wonderful supper of salad and fresh haddock, just off the boat. As I said to the family "these simple days are the best ones".

So the plan for this week is bloodwork on Thursday and if the counts are good, chemo on Friday. Since it's a short visit with only one medication we'll just travel down for the day. But as with nursing…plans are always subject to change, gotta be flexible. 

Wednesday, August 17, 2016

The entire experience

Well as my colleague asked "you wanted to have the entire experience right?" in response to my news of the latest medical saga. 

I did (in my estimation) very well with the first chemo treatment - no nausea, ate well, no fatigue so….thought I had it all under control. Of course, there is no controlling of the situation I find myself in at the moment, which was proven by the fact that I developed symptoms of a cold on Wednesday and by Thursday had a low grade temperature. Had my blood done for treatment the following day and so called the chemo nurse to see about the three hour drive and she assured me that although my counts were low that I was still within the guidelines to receive treatment unless I developed a fever or became ill. That evening when my temperature was 38c I dutifully presented to the ER for bloodwork, chest X-ray and urine sample. Diagnosed with neutropenia (severely low white blood count) pneumonia and bronchitis I found myself admitted with an IV and IV antibiotics every 6hrs, aerosol masks, daily bloodwork and booster for my white blood cells on reverse precautions (those who came to see me had to wear a mask and clean their hands, staff wore gowns and gloves). I didn't actually feel too badly the first day (looked worse on paper) but by the weekend was feeling really rotten with high fever which refused to budge even with tylenol so fan over ice, cold facecloth, ice packs, pushing fluids and feeling as if someone had poked me in both eyes and wrapped a huge rubber band around my head. By Monday my counts were back to normal and my temperature resolving. Tuesday found me well enough to come home on inhalers and oral antibiotics. Coughing and still getting back on my feet, but generally feeling much better. 

Haven't (of course) been able to enjoy the pool myself except for one family swim last Tuesday before all the shenanigans began. Lots of fun with the floaties and squirty toys followed by a BBQ as the prenatal daughter and five year old grandson were visiting. This weekend is an annual BBQ for my sister's birthday so will look forward to having the gang here and the grandson will be along for that and the following week as I've enrolled him in swimming lessons. 

Found a new cleaner and she didn't complain about the cat hair (mind you, she has two himalayan kitties, two rabbit hounds and two lizards) so was clearly a good choice as an animal lover. She is also an obsessive cleaner who enjoys it - yes, there are people like that and they are the ones to find to clean for you - lives nearby and drives. Was pleased to have this settled and came home to a sparkling house. 

Spent today paying some bills and dealing with bureaucracy. When an agency is called Service Canada one would be allowed to think they might assist you right? Ha ha ha ha. If you press continue on the website query, a message saying the website is temporarily down appears. There is no way from the website to figure out a phone number (except for pensions) and when you dial it, no way to speak to a human. A friend suggested punching 0 (which I did causing it to ring and ring - gave up at 20 rings). So I called my MPs office for assistance and was assured they have a private line to Service Canada and would deal with my problem and call me back. Now, I don't know about you but….this did not reassure me. You have a service which is so dysfunctional as to require intervention and yet don't try to fix it? Hmmmm. Hopefully the politicos can work their magic. 

Well, since I had to cancel a stack of appointments due to my unplanned 'break' I have rescheduled picking up my wig until tomorrow. A coworker and myself have arrangements to go to lunch following and she is driving me so I feel quite princess like. The plans for a late October 40th anniversary nursing class reunion are coming together and really something positive to look forward to. Later…..

Saturday, August 6, 2016

The journey continues

For those following along with my journey from the 'other side of the healthcare system' let me reassure you that I am managing well. A few bumps in the road as I navigate the trail but….moving forward. And although as I fondly watch the photos of my alternate (northern) life posted online, I realize that my fight is here at the moment. 

I travelled to the city last week for what was to be my first chemo treatment and…it wasn't. We made our way down the afternoon before so the shore captain could assist with some renos of the teacher daughter's garage and broke up the travelling. A childhood friend and her hubby who live in the neighbourhood strolled over in the heat and humidity to visit as the construction was underway below, and we visited on the deck under the shade of the grape arbour. Nice to have a few minutes to catch up. As they departed, I phoned a former travel mate who was hosting an American classmate from the Liverpool School of Tropical Medicine course visiting before heading back to Bangladesh, as we had arranged to go to supper. The plans changed to the hostess' hubby having made supper so they arrived to take me across the city and then we stopped on the return trip for cheesecake at The Sweet Hereafter. Highly recommend it if in Halifax - the key lime cheesecake and a cup of tea was a wonderful ending to the visit. Fell into bed late, stuffed and relaxed. An early leave for a Dr. appointment and the usual prodding and poking, discussing of plans and news that my chemo drugs had been changed to a regime with the same response rate and less side effects. Unfortunately the requirement is for 24 hours of steroids pre-treatment, which I obviously hadn't had so….a return the following Friday. 

No, not Tuesday, when I was booked for the routine CT scan to check my post op complications healing as I couldn't be fitted into the schedule, so two trips to the city this past week. An early morning start on Tuesday, quick test and over to meet the teacher daughter and her sister (she had been retrieved from her flight home from Cuba on Sunday). A stop at Canadian Tire to pick up an above ground pool, some yarn at Walmart and on the road. Returned home to find an excavator and truck in the yard preparing a spot for the pool we'd brought. 

Wednesday was a trip for wig fitting and it wasn't as painful as it sounds. Ignoring the suggestion of my life partner who suggested I could become a redhead and my job share partner who insisted Fredericks of Hollywood (some of you may remember their ads from the backs of childhood comic books) and a big ass Dolly Parton wig….I chose instead the same shade and style as my own. Who knew there was so much to know about wigs? You can't cook while wearing them - they frizzle - I am planning to wear the hair replacement only for outside the home, so no biggie. The intent is to not stand out so as to reduce questions, suggestions and pity from strangers - much like pregnant mothers endure. So, put it on front to back to front (are you listening Donald Trump?) and centre it with the side tabs and finger comb the style in to place. My benefits pay for a basic model (machine made) and so I opted to pay the difference on a mid price range (hand tied) model which is coming from Germany. Supposed to be lighter, cooler and more comfortable. Instructions on how to shampoo, condition and care for the wig followed. I found a cozy (bamboo) cap as well for non hair days and will return next week when the wig arrives for final approval. Since I wasn't sure how emotional the fitting would be, I had contacted some nursing classmates as a pleasant outing to look forward to, and we enjoyed a lovely lunch on the warm, sunny deck of Rudders Brew Pub overlooking the busy harbour. We planned some dates for our 40th anniversary weekend get together in October and the research has begun. Something positive to look forward to in the fall. 

Thursday I had convinced a cleaning lady to come and so escaped to allow her space and walked the beautiful local beach with a former coworker and good friend of many years - very therapeutic. When I returned, the cleaning lady (who had done a lovely job) admitted defeat and claimed she would not be able to do the job weekly. Gotta be a record for the shortest job! The search continues. The shore captain arrived to assemble the pool and was sourcing water. It's very dry this summer so using the well wasn't an option. Mind you, that had been his plan until the local fire department declined their pump and asked if we had 7000 gallons of water in our well. So, mister THEN goes to check and oops we have 'a couple of well rings'. Back to the saltwater plan. 

Friday morning was a quick run to the city for the chemo treatment. A slight delay as we awaited the drug (pharmacy had only known for a week I was booked the experienced nurse said with a knot in her face) and another patient having a serious allergic reaction which caused some hustle so a bit behind but…still only three hours in total. The schedule is Dr. visit (variable wait times of course) and two drugs the first day of the cycle (about 2 hrs) then only one drug the second week (about 45 min if all goes smoothly) thankfully it's the shorter one that stings a bit. Mister had gone to source a pump and had to be summoned as I was finished. A former coworker who knows her way around the chemo unit as her daughter attends came to visit and brought a care package - I am so spoiled. A stop at the drive through and a quick run home to make BBQ for supper. To bed early and awake a couple of hours in the night (? steroid reaction) but able to get eight hours of snoozing in. Sure hope things continue in this pattern as the list of side effects I'm hoping to avoid is lengthy. 

Up this morning to hit the local yard sales and scored some craft supplies, jelly, household finds and a dress while socializing. Ahhh Returned to find the shore captain and one of his minions pondering the pump the saltwater plan at high tide.
salt water fill underway
Kind of a drizzly, windy, cooler than lately kind of day. They managed to fill the pool in two hours but discovered that the sides needed to be rebraced as the gravel pad wasn't completely level so…tomorrow they will drain, brace and refill the unit. But first father and daughter took a celebratory swim…while I watched from dry land. The prenatal daughter is coming this week from the city (she has a list of craft projects for the impending grand baby which she is seeking assistance with) and has been tasked with obtaining pool toys - a ride on shark for the grandson, an air mattress for me and pool noodles for all. Can't wait. Even without a cabana boy in a thong to serve us girly drinks, it will be fun. 

So, a day to catch up on tasks such as clearing out the junk emails, puttering, reading my book and updating the blog. Ahhh. Not sleepy yet but as I woke up the snoring life partner from the 'in front of the ballgame recliner' to go to bed, he said "past my bedtime, not yours" which is of course accurate of this night owl.